1. Introduction

Adults with learning disabilities may have a greater need for protection if they are unable to keep themselves safe. They can experience abuse and neglect from people they know such as family, friends, neighbours, support staff and other practitioners, but also from complete strangers. It is important, therefore, that staff understand the issues, are able to recognise signs of potential abuse and can empower adults with learning disabilities, where possible, to recognise and understand the risks they may face and know what to do if they have concerns or are frightened about someone.

1.1 Findings from LeDeR

Learning from lives and deaths – People with a learning disability and autistic people (LeDeR) reviews all deaths of people with a learning disability or autism and aims to identify learning to help prevent similar deaths in the future.

LeDeR reviews have found that people with learning disabilities die younger than those without learning disabilities; six out of 10 people with a learning disability die before they reach the age of 65, compared to one in 10 in the general population. The programme also found that people with learning disabilities are twice as likely to die from avoidable causes than the general population, with almost half of all deaths being classified as avoidable.

Some of the most common concerns found during LeDeR reviews relate to:

• delays in the diagnosis and treatment of illness;
• poor care coordination and communication between agencies;
• omissions in care and the provision of substandard care;
• poor application of the Mental Capacity Act 2005;
• a lack of timely referral to specialists, including learning disability services and neurologists.

2. What is a Learning Disability?

Mencap defines learning disability as:

 ‘a reduced intellectual ability and difficulty with everyday activities – for example household tasks, socialising or managing money – which affects someone for their whole life. People with a learning disability tend to take longer to learn and may need support to develop new skills, understand complicated information and interact with other people.’

However, with personalised support, many adults with learning disabilities can lead fulfilling and independent lives.

2.1 Causes of learning disabilities

Before birth, damage to a baby’s brain and spinal cord (called the central nervous system) can cause a learning disability. This may include if the mother has an accident, illness, infection or is exposed to environmental toxins while pregnant, or if the parents pass certain genes or an inherited condition to the unborn baby. A baby can also be born with a learning disability if they do not get enough oxygen during childbirth, have a traumatic head injury, or are born too early (premature birth). A learning disability can also be caused by early childhood illnesses (such as meningitis or measles), seizures, accidents or abuse or neglect, which result in injury or trauma to the brain. Sometimes the cause of a learning disability is not known.

2.2 Types of learning disabilities

There are nearly 1.2 million adults in the UK with a learning disability (Mencap), which can be mild, moderate, severe or profound. In all cases, a learning disability is a lifelong condition.

Mild learning disabilities can be difficult to diagnose as the adult will often socialise well with other people, can manage most daily tasks and require only limited support. However, they may need support in some areas, such as completing forms or finding a job.

Adults with a severe learning disability or a profound and multiple learning disability (PMLD) will have greater needs for care and support, including mobility, personal care and communication, especially if they also have a physical disability or disabilities. People with a moderate learning disability may also need support in these areas, but that is not always the case.

2.3 Related conditions

Some adults with learning disabilities may also have other conditions, including:

• autism – approximately half of autistic people may also have a learning disability (see What is Autism? Mencap);
• cerebral palsy, which is a physical condition that affects movement, posture and coordination– (see Cerebral Palsy, Mencap);
• challenging behaviour, also known as behaviour of concern, is not a learning disability but adults with learning disabilities are more likely to show it (see Challenging behaviour, Mencap);
• Down syndrome (also called Down’s syndrome) is a genetic condition that usually causes some level of learning disability (see, Down Syndrome, Mencap).

For further information, see Learning Disability and Conditions (Mencap).

2.4 Learning difficulties

A learning disability is different from a learning difficulty, as a learning difficulty does not affect general intellect. A learning disability affects somebody across all areas of their life. Specific learning difficulties, such as dyslexia, only affect a subset of skills and are not the same as a learning disability.

The main types of learning difficulty are dyslexia (which mainly affects reading and writing skills and sometimes information processing), dyspraxia (which affects physical co-ordination and can cause people to perform less well than expected in daily activities) and dyscalculia (which is persistent difficulty in understanding numbers which can lead to a range of difficulties with maths). It is possible for a person to have both a learning disability and a learning difficulty. Sometimes neurodevelopment and neurological conditions like ADHD are confused with a learning difficulty or a learning disability, but they are not the same.

3. Abuse and Neglect of Adults with Learning Disabilities

The Care and Support Statutory Guidance (Department of Health and Social Care)  identifies the following types of abuse and neglect, all of which can affect adults with learning disabilities;

• physical abuse;
• domestic violence;
• sexual abuse;
• psychological abuse;
• financial or material abuse;
• modern slavery;
• discriminatory abuse;
• organisational / institutional abuse;
• neglect and acts of omission; and
• self-neglect.

If an adult with a learning disability has communication needs, this may make them more vulnerable to abuse and exploitation.

3.1 Hate crime

Disability hate crime is a criminal offence motivated by hatred or prejudice towards a person because of their actual or perceived disability.

The Crown Prosecution Service define disability hate crime as:

‘Any incident / crime which is perceived by the victim or any other person, to be motivated by a hostility or prejudice based on a person’s disability or perceived disability’. Disability Hate Crime and other Crimes against Disabled People – Prosecution Guidance (Crown Prosecution Service).

Hate crime can include:

• verbal and physical abuse;
• threatening behaviour;
• damage to property;
• online abuse;
• stalking and harassment.

Hate crime directed at adults with learning disabilities should be reported to the police, or online at Stop Hate UK.

3.2 Befriending crime or mate crime

Whilst not a category of abuse within the Care and Support Statutory Guidance, befriending crime (or mate crime) is another type of abuse often experienced by adults with learning disabilities. It occurs when someone pretends to be the friend of an adult simply to take advantage of them. It can include:

• grooming or forcing an adult to commit a crime;
• taking an adult’s money;
• forcing an adult to work for little or no pay (see also Modern Slavery chapter);
• preventing an adult’s access to food or basic needs;
• harassment or emotional abuse;
• sexual assault / abuse or physical abuse.

3.3 Cuckooing

Adults with learning disabilities may also be victims of ‘cuckooing’. This is when a person or group of people befriend an adult who is in some way vulnerable and then move into their property and use it to deal drugs and / or as a base for sex work or other criminal activities. Adults with learning disabilities, particularly those who are living on their own, are at increased risk of being targeted by such criminals as they may not fully understand risks and dangers or know how to ask for help, so they can be easily manipulated or frightened. They may also be receiving higher rates of benefits from the Department of Work and Pensions due to their disability, which can result in them being an additionally attractive target of financial fraud.

Concerns that an adult with learning disabilities is experiencing, or at risk, of any type of abuse of neglect should be shared with the local authority safeguarding adults team.  Wherever possible, practitioners should speak to the adult first to discuss their concerns and ask their views and what they would like to happen. However, practitioners can still share safeguarding concerns with the local authority even if they are not able to speak to the adult first, or if the adult does not give their consent.

3.4 Organisational abuse

Organisational abuse (also called institutional abuse) includes neglect and physical and / or psychological abuse or poor care practices within a residential or other specific care setting; including care provided to an adult in their own home. This could be a one-off incident or involve ongoing, long term or recurring poor treatment of an adult.

Organisational abuse can involve neglect or poor professional practices linked to the structure, policies, processes and practices in place in an organisation. In some organisations, poor practices can result in a ‘closed culture’ where not many people visit the care setting (if the care setting is located away from towns and cities and is not easily accessible by transport, for example) and adults are at risk of harm, including human rights breaches and abuse. See also Closed Cultures (Care Quality Commission).

4. Ask, Listen, Do – Practice Guidance Information for Working with Adults with Learning Disabilities

The information in this section is taken from The Oliver McGowan Mandatory Training on Learning Disability and Autism – (NHS)

4.1 Ask

• Always communicate with the adult first, even if you’re not sure they are able to understand you.
• Ask what the adult’s preferred methods of communication are.
• Ask if the adult has a communication passport, hospital passport, care plan or other document that you could see. This could help you understand the adult’s needs and how best to support them.
• Begin with open questions. If the adult struggles, then provide more support and move on to yes and no questions, if needed.
• You may need to repeat or rephrase things.
• Ask:

• • “what would you like to happen?”
  • “how would you like to be supported?”
  • “what is the best way I can help you?”

• Ask if there is anyone else it would be helpful to talk to.
• Always consider the adult’s mental capacity to make decisions about sharing information with others. Only share information, or talk to other people, with the adult’s consent or (if they lack mental capacity) where it is in their best interests.
• If the adult is struggling, do not ask, “what is wrong with you?” but instead, “what has happened to you?”

4.2 Listen

• Listen to all the ways that the adult might communicate their thoughts, feelings and preferences. This includes body language, tone, behaviour and any other method they use to communicate.
• Don’t jump in when an adult is taking time to think. Allow time and listen carefully to their views and choices.
• Adults many need more processing time. Be patient and persevere.
• Listen to the adult’s own language and understanding; use their words where it is helpful.
• In listening, check that the adult has understood what you have said; get them to summarise in their own words.
• Check that the adult is not simply repeating what you have said or just agreeing with you. If you notice any response patterns, try asking questions in a different way to see if you get the same answers.
• Avoid making judgements or assumptions, which can be barriers to good listening.
• Consider involving an advocate if the adult needs support in order for their voice to be heard.

4.3 Do

• Empower adult. Support to them to have choice and control in their own life. Make sure that you keep them at the centre of decision making.
• Encourage adult e to ask questions and to tell you if they don’t understand something. Never talk about the adult as if they weren’t there.
• Treat the adult in an age-appropriate way, respecting their roles and experiences.
• Be respectful and take time to find out about the adult’s preferences and cultural needs.
• Don’t assume that because the adult has a learning disability they don’t understand. Instead, make sure that things are explained in more simple language. This means avoiding jargon and long, complex sentences.
• Break things down into chunks or smaller steps.
• Make use of existing reports and care plans, which help you to understand the adult’s areas of strength and needs and how best to adapt your approach.
• Think holistically about the adult and their life. Consider their broader needs, such as good supportive relationships, meaningful occupation, the right environment and meeting their mental and physical health needs, and the impact these may have.
• Promote independence and skills development in a way that is meaningful and accessible for the adult.

4.4 Things to remember

Communication includes both giving and receiving information.

It is important to take responsibility for meeting an adult’s unique communication and information needs.

Even when an adult is unable to communicate verbally, it is important to involve and include them by using communication methods which are suited to their needs.  It is your responsibility to make that possible.

You may get incomplete or incorrect information from, or about, an adult if they are stressed and finding it difficult to process.

They may be able to understand more than they can express at that moment, because they may be overwhelmed and need space and time to process and understand.

The sensory environment is important for many as it can be overwhelming or frightening. Remember to consider this when choosing a venue.

5. Using the Care Act Principles to Safeguard Adults with Learning Disabilities

To reduce the likelihood of adults with mild or moderate learning disabilities experiencing or being at risk of abuse or neglect, practitioners should provide support and information tailored to their individual needs and level of understanding. The six key principles for safeguarding adults contained in the Care Act 2014 should guide all work to safeguard adults with learning disabilities.

1. Prevention: Where possible, adults should be provided with appropriate level information and education about what safeguarding is, the signs of harm and abuse and what to do if they believe they, or someone they know, are at risk of or are experiencing abuse or neglect. Providing a sound knowledge base in this way can help to reduce the likelihood of abuse being recognised and reported. Taking preventive measures will help reduce the overall risk to the adult and empower them to take control of their own lives. Organisations such as Mencap or local learning disability teams provide easy read guides which can be used to support adults with learning disabilities (see Easy Reads and Easy Read Library, Mencap). Positive risk management plans can also be used to help the adult live the life they want to live while seeking to minimise any risks they may face.
2. Empowerment: It is essential to involve adults in decisions about their lives and seek their views on what they want to happen (see Section 4, Ask, Listen, Do – Practice Guidance Information for Working with Adults with Learning Disabilities). Too often, when working with adults with learning disabilities, practitioners and medical professionals make decisions on their behalf and without consulting them This may be because the adult lacks the mental capacity to make the decision themselves (see Mental Capacity chapter) or because practitioners do not realise that making decisions for adults may not be in their best interests or reflect their wishes. Even if the adult lacks mental capacity to make a decision, their views still need to be sought. Seeking the adult’s views should start when a safeguarding concern is first raised; practitioners should ask them the adult what they want to happen and what outcome they want to achieve at the end of the safeguarding process (see Making Safeguarding Personal chapter). By putting the adult at the centre of the process, it ensures their voice is heard and that they are kept informed about what is happening, what will happen next and if the outcome they want can be achieved. The adult’s preferred outcomes should guide the safeguarding process as much as possible. Under section 42 of the Care Act, the adult is not required to give consent for a safeguarding enquiry to take place, as the local authority has a duty to investigate a safeguarding concern if all the relevant criteria is met (see Safeguarding Enquiries Process). However, once the safeguarding enquiry is underway, the local authority will need to decide what action it is going to take following the investigation. The adult, who is the subject of the safeguarding process, does need to be involved in this, unless there are exceptional circumstances where the risk to the adult would increase.
3. Proportionality: Practitioners should not rush to make decisions, without considering the least intrusive response to any safeguarding concern. Failing to consider the most appropriate response can have a negative impact on adults with learning disabilities, especially if they are protective of the alleged abuser who could be a partner, family member, friend or a long-time carer. They may not want to feel they have got the person in trouble with adult social care or, potentially, the police. Therefore, when a concern is raised, practitioners need to make sure they take a proportionate response by assessing the situation and taking the least restrictive approach to reducing the risk, while always keeping the adult at the centre of the safeguarding process.
4. Protection: Practitioners need to make sure that they provide support to those at most risk of harm and that they have a key support network around them, which can help them feel able to tell a trusted person what is happening to them. This can be done by ensuring the adult has access to advocacy (see Independent Advocacy chapter), key workers, and regular visits from practitioners from other agencies as applicable, including provider services. It is also important that if a safeguarding referral is received, the relevant practitioner regularly checks in with the adult to see how much they want to be involved in the process and what this could look like for them. For example, one adult may want to attend the safeguarding meetings whilst someone else may want an advocate to go on their behalf. Practitioners need to ensure that accessible information is provided to assist with explaining the process such as easy reads, pictorial support, sign language or any other form of communication that will meet their needs (see Interpreting, Signing and Communication Needs chapter).
5. Partnership: Working in partnership with other agencies and local communities is key to keeping adults with learning disabilities safer. This ensures the adult themself to know who they can go to for support and also provides information and knowledge to the community about their role in safeguarding adults. It also enables the adult to maximise their independence, knowing that they are safer. One of the ways this has been done is the introduction of ‘safe places’, where shops and community centres sign up to provide a safe place for vulnerable people to access support and assistance if they are scared or need a place of safety. Safe places can be identified by a yellow sticker in the window – see Keep Safe with Safe Places).
6. Accountability: Practitioners need to make sure they are accountable for their actions and are transparent with the adult they are supporting. The adult must be kept informed, in a way which is appropriate to their particular needs, so that they understand what everyone’s role is and what they can expect to happen.

These six key principles underpin the making safeguarding personal agenda, which focuses on what the adult wants to happen as an outcome of the safeguarding process. Working this way supports adults with learning disabilities to feel more confident as they know their views, wishes and feelings will be heard. Making Safeguarding Personal is a significant move away from the previous approach where adults with learning disabilities would often have things ‘done to them’ to keep them safe, without involving them in the decision-making process.

As Lord Justice Mumby stated:

“What good is it making someone safer if it merely makes them miserable?”  (see Local Authority X v MM & Anor (No. 1) (2007))

Practitioners need to ensure they promote the views and needs of the adult themselves.

1. What is Professional Curiosity

Professional curiosity is about exploring and understanding what is happening in a person’s life, rather than accepting things at face value. It involves observing, listening, asking direct questions and sometimes having difficult conversations with people. It is also known as ‘respectful uncertainty’.

It is about practitioners making sure that – when working with adults and their families / friends and carers– that they keep an open mind, ask questions, dig deeper and challenge their own assumptions as well as those of other practitioners.

Professional curiosity and challenge are essential part of practice, with the aim of keeping adults with care and support needs safe. Safeguarding Adults Reviews have often found that practitioners have not been curious enough, have not asked enough probing questions and have too easily accepted situations as they have been presented to them.

The risks of abuse or neglect that an adult may face are not always immediately obvious, especially if they or their family / friends do not want practitioners to know what is really happening. This may be more likely if an adult is being abused or neglected by someone they know or there are other types of criminality in the home. Being more curious as practitioners and digging deeper into areas of an adult’s life or circumstances, can help inform assessments and empower staff to influence key moments of decision-making and therefore help to keep adults safe and promote their wellbeing (see Promoting Wellbeing chapter).

Professional curiosity can help practitioners:

• understand the full picture;
• make sure they have all the necessary information;
• improve outcomes for adults with whom they are working;
• help keep adults safe;
• identify disguised compliance (see Section 3, Disguised Compliance);
• support other professionals working with the adult, including those from partner agencies.

Whilst this information focuses on practitioners working with adults with care and support needs, it also applies when working with children and families.

2. Professionally Curious Practice

Professional curiosity requires practitioners to:

• think ‘outside the box’ and consider an adult’s circumstances as a whole, including other how their life is affected by other family members (see Whole Family Approach chapter);
• engage with adults and their families in a way that helps them understand the adult’s lived experiences. This should include taking a person-centred approach and providing culturally appropriate practice to the people with whom they are working (see Making Safeguarding Personal and Safeguarding Adults and Culturally Competent Practice chapters).

Adults may not always disclose information about abuse and / or neglect directly to practitioners, particularly when they first meet. This can make identifying adults who are, or at risk of, being abused or neglected more challenging. Being professionally curious is, therefore, key to being able to identify possible abuse and acting promptly to safeguard the adult and promote their wellbeing.

It can also mean considering issues which may be outside of their usual professional role. In such circumstances, discussions should take place with line managers and staff from other agencies to clarify roles and responsibilities, to ensure all relevant care and support is in place for the adult.

There are different ways of being professionally curious. These include observing, asking, listening and clarifying. Practitioners should spend time engaging with adults and their families / friends on visits, using these approaches as required.

2.1 Observing

• Do you see or observe anything, when you meet with the adult / their family / friends, that makes you feel uncomfortable?
• Do you observe behaviours which indicate abuse or neglect, including domestic abuse (see Types of Abuse and Neglect and Domestic Abuse chapters)?
• Does what you observe either contradict or support what you are being told by the adult, their family or other practitioners who are involved?
• How do the adult and family members interact and communicate with each other, and with you?
• Do you want to ask further questions as a result of what you have seen?

2.2 Asking

• Do not assume you know what is happening in the adult’s home environment – ask questions and seek clarity if you feel you are not sure.
• Do not be afraid to ask questions of everyone involved, including any visitors to the home. Be open in the way you ask questions, so that people know it is about being able to achieve the best outcomes for the adult – you are not judging or criticising them.
• Be open to accepting new or unexpected information that may not support your initial assumptions about the situation. Incorporate this into your assessment and review care and support plans as necessary

2.3 Listening

• Are you being told anything that you think you needs further clarification (see Section 2.4 Clarifying)?
• Do you feel the adult, family member or friend is trying to tell you something, either verbally or through non-verbal cues, for example you pick up in their body language or what they are not saying?
• Is there anything that concerns you about how family members or friends interact with the adult and what they say?
• It is essential that you have the time and space to have a private conversation with the adult, to give them the opportunity to say anything they want without family / friends listening or speaking for them. This should not just be a one-off conversation but as often as possible, as it may take time for the adult to build up a trusting relationship with you.

2.4 Clarifying

• Are practitioners from other agencies involved? If so, what information do they have?
• Are other practitioners being told the same things by the adult / family /friends as you, or are they being given different accounts of the same situation?
• Are other practitioners concerned about the adult, and if so what are their concerns?
• Would a multi-disciplinary discussion be useful / required?
• What action has been taken so far? Is there anything else which could or should be done by you or someone else to support the adult?

Sharing relevant information with relevant practitioners from other agencies is key to safeguarding adults who are experiencing, or at risk of, abuse and / or neglect and, as well as ensuring better outcomes for all adults who have care and support needs. See South Tyneside Multi Agency Information Sharing Agreement.

3. Disguised Compliance

Some adults, family members or friends may display a behaviour called ‘disguised compliance’. This is when people give the appearance of co-operating with agencies in order to deflect practitioner concerns and avoid raising suspicions.

People will often want to show their ‘best side’ when interacting with practitioners; this can be quite normal behaviour. To a small degree, disguised compliance can be seen in many people. However, there is a difference between this and someone who is being superficially cooperative in order to keep abuse or neglect of the adult hidden and practitioners away. In such cases, the adult, family member or friend plans this compliance, to make it look like they are cooperating, when in reality they are not.

There is a risk that practitioners who are not professionally curious may delay or avoid taking action, due to disguised compliance.

4. Professional Challenge

Practitioners may experience differences of opinion, concerns and issues both with colleagues in their own organisation and with those from other agencies. In such circumstances it is vital these are resolved as effectively and swiftly as possible.

Working with different professional perspectives is a key part of a healthy and well-functioning partnership, and differences of opinion can usually be resolved by discussion and negotiation between the practitioners concerned. It is essential however, that where differences of opinion arise they are resolved in a constructive and timely manner, so they do not adversely affect the outcomes for adults and their families / friends.

If there is a difference of opinion between practitioners, remember:

• the process of resolving professional differences and disagreements can help find better ways to improve outcomes for adults and their families / friends;
• each practitioner is responsible for their own cases and their actions in relation to individual adults;
• differences and disagreements should be resolved as simply and quickly as possible by individual practitioners and /or their line managers;
• everyone should respect the views of others, whatever the level of their experience;
• discussions about disagreements should always be respectful and courteous and remain professional at all times;
• challenging more senior or experienced practitioners can be difficult, so practitioners may need support to do so when necessary;
• practitioners should expect to be challenged and not take it personally – working together effectively depends on open and honest relationships between agencies.

The likelihood of professional differences is reduced by everyone being clear about their roles and responsibilities and ensuring that they do what has been agreed as well as the ability to discuss and share problems.

See Escalation and Challenge Protocol.

5. Supervision

Regular supervision helps improve practitioner decision-making, accountability, and supports professional development. It is also an opportunity to question and explore an understanding of a case.

Group supervision and reflective practice can also be effective in promoting professional curiosity, as practitioners can use these spaces to think about their own judgments and observations and discuss them with colleagues in a safe space. It allows practitioners to learn from each other’s experiences, especially as the issues considered may be similar to other cases.

1. Introduction

There are many different factors that contribute to a person living in poverty. Broadly these can be described as a) personal – meaning they are a result of their individual situation, including employment, opportunities, life circumstances etc and b) universal – meaning factors that affect everyone such as the costs of food, fuel, heating and lighting etc.

This chapter outlines the main issues regarding poverty, how it affects people, how it can additionally affect people with care and support needs and contains details of specialist organisations that can provide support.

2. What is Poverty?

The Joseph Rowntree Trust (JRF) is the leading UK charity which aims to end poverty. It defines poverty simply as being when someone’s resources are well below their minimum needs.

The JRF is clear that there is not just one definition of poverty and that it is a complicated issue and that a range of measures are needed to help us understand the different features of poverty. For more information, see What is Poverty?).

There are two main ways of measuring poverty – absolute and relative poverty.

Absolute poverty:

Absolute poverty is when the income of a household is below a certain level, with the result that it is not possible for an adult or family to meet the basic needs of life including food, shelter / accommodation, safe drinking water, education and healthcare for example. Absolute poverty compares households based on a set income level. This level varies from country to country, depending on the particular nation’s overall economic conditions.

Relative poverty:

Relative poverty is when a household receives 50% less than the average income for a household. While they do have some money coming in, it is not enough money to afford anything above the basic needs of life. This type of poverty changes depending on the economic growth of the country.

Relative poverty is also called ‘relative deprivation’, because people in this category are not living in total poverty. They cannot, however, afford the same standard of living as everyone else in the country. It can be for example TV, internet, clean clothes and a safe home (a healthy environment, free from abuse or neglect).

Relative poverty can also be permanent; people can be ‘trapped’ in a low relative income. Since long-term poverty has an impact on economic and social conditions, persistent poverty is an important concept to remember. For more information see Relative vs Absolute Poverty Habitat for Humanity.

3. What are the Causes of Poverty in the UK?

The causes of poverty are issues that either reduce a person’s financial resources and / or increases their needs and the cost of meeting those needs. Life events and moments of change – such as getting ill, suffering bereavement, losing a job or a relationship breaking down – are common triggers for poverty.

JRF states that some of the causes of poverty in the UK today are:

• unemployment and low-paid jobs which have little prospect of getting better paid and are insecure (or a lack of jobs): many areas in the country have a lot of these jobs or do not have enough well-paid jobs. Low pay and unemployment can also lead to not being able to save or have a pension;
• low levels of skills or education: young people and adults who do not have the right skills or qualifications can find it difficult to get a job, especially one with security, prospects and decent pay;
• the benefit system: the level of welfare benefits for some people – who are either already in work (which is low paid), looking for work or unable to work because of health or care issues – is not enough to avoid poverty, when combined with other resources and high costs. The benefit system is often confusing and hard to engage with, leading to errors and delays. The system can also make it difficult for a person to move into work or increase their working hours. For more information see Benefits A-Z, Community Care Inform;
• high costs: the high cost of housing and essential goods and services (for example gas, electricity, water, Council Tax, telephone or broadband) creates poverty. Some people face particularly high costs because of where they live, because they have increased needs (for example, personal care for disabled people) or because they are paying a ‘poverty premium’ – where people in poverty pay more for the same goods and services;
• discrimination: people can be discriminated against because of their class, gender, ethnicity, disability, age, sexuality, religion or parental status (or even because of poverty itself). This can prevent them from getting out of poverty and can restrict access to services;
• relationship issues: a child who, for whatever reason, does not receive warm and supportive parenting can be at higher risk of poverty when they are older, because of the impact on their development, education and social and emotional skills. Family relationships breaking down can also result in poverty;
• abuse, trauma or chaotic lives: for some people, problematic or chaotic use of drugs and / or alcohol can make poverty worse and longer. Neglect or abuse in adult life can also cause poverty, as the impact on mental health can lead to unemployment, low earnings and links to homelessness and substance misuse. Being in prison and having a criminal record can also make poverty worse, by making it harder to get a job and its impact on relationships with family and friends;
• disability and ill health: these are the main causes of poverty. Disabled adults and families with a disabled child are disproportionately represented in groups which are experiencing poverty.

In recent years worldwide factors have pushed up prices, further impacting on the number of people in poverty and worsening levels of poverty.

4. What are the Consequences of Poverty in the UK?

JRF state that some of the consequences of poverty include:

• ‘health problems;
• housing problems;
• being a victim or perpetrator of crime;
• drug or alcohol problems;
• lower educational achievement;
• poverty itself – poverty in childhood increases the risk of unemployment and low pay in adulthood, and lower savings in later life;
• homelessness;
• teenage parenthood;
• relationship and family problems;
• biological effects – poverty early in a child’s life can have a harmful effect on their brain development.’

In addition, people may:

• be less able or unable to afford:
  • clothing;
  • vital home equipment such as oxygen and dialysis machines due to electricity costs;
  • leisure or sports activities;
  • transport (this is particularly an issue for people who live in the countryside and also may result in people not being able to attend social care, hospital and other important appointments);
  • broadband – further limiting their opportunities for finding work or saving money;
  • attend employment / training;
• need to go to food banks;
• need to borrow money either from family or friends, official (banks or credit unions), or unofficial sources such as loan sharks which can result in threats, intimidation and their possessions seized if they cannot afford to repay them;
• have to pay for goods and services on high interest credit;
• resort to crime or sex work to get money to pay bills.

In turn this can lead to increased stress, anxiety and mental health problems.

This guidance is specifically referring to adults. But where there are children living in families suffering from poverty, there are additional issues. See Child Poverty (JRF).

5. How Poverty Affects People with Care and Support Needs?

People with care and support needs may be particularly vulnerable to poverty because:

• they may be less able to work, or work in lower paid jobs, due to ill health or having a disability;
• if their health issues have been long term, this may have impacted on their education and training opportunities, which may have resulted in them never being able to get decent paid jobs, or any job;
• their health needs or disability may result in them having to:
  • pay for care and support services, such as home carers;
  • regularly buy equipment or supplies;
  • make adaptations to their house as a result of mobility and other issues;
  • having to move home, if it becomes unsuitable for them as a result of their needs;
  • have the heating and / or lighting on more often;
  • rely on local food shops which may be more expensive / have less choice;
  • buy food for specialist diets;
  • use their own car or pay for taxis if they cannot walk or use public transport due to health issues.

In addition, their carers may also be living in poverty, because:

• they are not able to work / work full time because they need to look after their family member with care and support needs;
• the household income is reduced because of having to pay for those issues listed above.

6. Poverty and Safeguarding

Living in poverty can increase the likelihood of an adult experiencing or being at risk of abuse and / or neglect. There may be safeguarding incidents committed – accidentally or deliberately – by people close to the adult who are struggling as a result of living in poverty. These people include:

• spouses or other family members;
• neighbours or friends;
• carers – paid or unpaid;
• other professionals.

People with care and support needs who are living in poverty are more likely to experience the following types of abuse:

• physical abuse;
• domestic abuse;
• sexual abuse;
• psychological abuse;
• financial or material abuse;
• modern slavery;
• discriminatory abuse;
• organisational abuse;
• neglect.

6.1 Self neglect

In addition, incidences of self-neglect are likely to rise as a result of more people living in poverty due to the reason outlined in Section 5, How Poverty Affects People with Care and Support Needs. Chronic illness and disability increase the risk of self-neglect, both of which are associated with poverty.

See also Self-Neglect Guidance

6.2 Taking action where there are safeguarding concerns

Where there are concerns that a person with care and support needs is experiencing or at risk of abuse or neglect, whether as a result of poverty or not, staff should follow these safeguarding adults procedures (see Adult Safeguarding Process: Overview).

7. Supporting People who are Living in Poverty

7.1 Practical help

People with care and support needs may need support with specific areas of their lives that are contributing towards them living in poverty.

There are some areas where practical help and advice is available. Whilst social work staff may have knowledge about appropriate interventions for people living in poverty, there are also specialist agencies that can help. These include:

• employment or education advice: specialist agencies can provide support and advice to people with care and support needs, based on their individual needs and wishes, to help them get into work or education, although it should be acknowledged that this may not be possible for everyone;
• benefits advice: specialist services can work with people, and their carers, to make sure that both are receiving all the benefits they are entitled to and can support them to apply for new benefits, such as carers allowance, personal independence payment (PIP) and attendance allowance. Advisers can also support people who feel their benefits have been unfairly ended or refused. People who are ill and / or disabled are more likely to be missing out on receiving the correct level of financial support from the benefit system. The benefits system is very complex and can be overwhelming, so people will often gain from having expert advice;
• medical and associated professions: where people are receiving care and treatment for specific health issues from doctors, nurses, occupational therapists or physiotherapists for example, they should be supported to make sure that they attend all their appointments and any obstacles, such as transport problems or a clash of appointment times are addressed well in advance to avoid stress for the person or the likelihood of them missing an appointment. If they do miss an appointment, they should be supported to contact the professional to explain what happened and to rebook it, rather than risk being removed from the service. Ensuring they receive the best possible health care can help improve their life circumstances with the goal of being less susceptible to poverty;
• care and support services: where a person is living at home and receiving care and support services, they should be supported by staff to ensure that services from providers run according to the care and support plan, are timely and if any issues arise the person, and their carer, are supported in addressing them. A financial assessment should be conducted to make sure that people are not asked to pay more for their care and support than they can afford;
• equipment, supplies and adaptations: where someone requires equipment, supplies or adaptations to the home as a result of their care and support needs, staff should make sure that they are referred to an occupational therapist, physiotherapist or other service as appropriate, to be assessed and provided with the equipment they need rather than have to pay for it themselves. This includes technology enabled care;
• moving home: if a person has to move home as a result of their changing care and support needs, or for any other reason, staff should make sure that they are given all the available assistance and financial support to enable this to happen. The local authority housing department should be contacted to see if the person is eligible for any financial support for their move and refurbishment of the new accommodation. In certain circumstances, including when a person is fleeing violence or a property needs work because of a person’s disability, housing benefit can be paid on two properties (see Shelter for more information);
• utility bills: if a person is struggling to pay their gas, electricity and water bills, staff should support them to contact the relevant utility company to come to an arrangement about the overdue amounts. This also applies to internet providers, which may be essential for people with care and support needs living at home. If a company is not willing to agree a repayment plan, an adult with care and support needs who receives benefits can ask for payments to be taken directly from their benefits to pay essential bills and contribute to repayment of accumulated debt. Most gas / electric, water and broadband providers have special tariffs to support ill and disabled adults who have a low income. Debt counselling and budgeting support is also available from local and national agencies (see Section 7.2, Local and national organisations);
• leisure and sport: leisure and sport can be essential for mental and physical health. Where people with care and support needs are able and want to take part, staff should help them source free activities, including through social prescribing services, and / or grants to enable them to take part. Local organisations can be key in offering events and activities;
• specialist diets: where someone with care and support needs requires a specialist diet, staff should support them to speak to their GP or dietician to see what support is available, such as prescriptions, to reduce the cost of buying specialist foods;
• prescriptions, dental care, eye tests: people on low incomes may be able to get free prescriptions, dental treatment eye tests and help with other NHS costs, see Get Help with NHS Prescriptions and Health Costs (gov.uk);
• transport: a person with care and support needs who is living in poverty may not be able to afford bus or taxi fares, or afford to run their own car. Staff should support them to find out what financial support is available for them. This will be dependent on their particular needs, but will be particularly important for those who cannot walk far or whose mental health affects their ability to travel. The mobility component of the personal independence payment (PIP) can support people with transport costs, blue badge and local travel passes (see What is Personal Independence Payment (PIP).

7.2 Local and national organisations

Poverty can be a very complex and challenging issue for staff who do not have a lot of knowledge and experience in this area. There may be local organisations which specialise in addressing issues caused by poverty, including food banks. Staff can put the person, or their carer, in touch with these organisations or otherwise take advice on an anonymous basis about specific aspects of supporting someone in poverty. Information about local support with the cost of living can be found on the South Tyneside Council website.

There are also a number of national organisations whose aim is to support people living in poverty. They have lots of information and advice for people. Again, staff can give their details to adults or their carers, or contact them directly for general advice. They include:

• Advice Finder (Advice UK) 
• Maximising Income (Child Poverty Action Group) 
• Get help with the cost of living (Citizens Advice)
• Debt and Money (Citizens Advice)
• Disability Rights UK Resources
• Financial Help if you’re Disabled (gov.uk)
• Advice Finder (Turn2Us) 

1. Introduction

Falling, or worrying about falling, can be a great concern and anxiety for those who are getting older or have illnesses or disabilities that may make them more vulnerable to falls.

Often people do not worry about having a fall until it actually happens. Straight after a fall, the main concerns will probably be about the physical impact and whether they need to see a doctor, go to Accident and Emergency or even be admitted to hospital.

However, after the physical effects have faded, a fall can affect a person’s confidence, self-esteem and impact on the activities they enjoy, especially if they are frightened it will happen again. A fall does not have to result in broken bones and bad bruising to seriously impact on a person’s mental wellbeing; even trips and small falls can have a significant effect.

As well as the physical and psychological effects of a fall for adults and their family, there is also an impact on health and social care services. For example, they may need to be admitted to hospital for an operation to repair a broken hip, or other significant injuries; referral for home care services may be needed for support at home, or they may not be able to return home and need to move into permanent residential or nursing care. As well as the psychological impact on the adult and their family and friends, this puts additional pressure on hospital beds (particularly related to delayed discharge), hospital and social care staff and domiciliary and residential care services.

For a number of reasons therefore, reducing the possibility of someone having a fall is vital. This chapter outlines some of the main issues to consider about falls and actions that can be taken to reduce the possibility of people having a fall. Issues raised that relate to preventing falls may be considered as part of a strengths based assessment.

2. Preventing Falls

There are a number of ways that people can reduce their risk of having a fall. These can be divided into actions for the person, as well as their environment.

2.1 Actions for the person

2.1.1 Contacting the GP

The adult should discuss any falls they have had with their GP and let them know if it has had any impact on their physical and mental health and wellbeing.

The GP can carry out some easy balance tests, to see if they are likely to have another fall in the future. They can also refer them to appropriate services in the local area. They may also need to review any medication the adult is taking as the side effects of some prescription drugs may increase someone’s risk of having a fall; if it is making them feel dizzy for example.

2.1.2 Strength and balance exercises

Doing regular strength exercises and balance exercises can improve people’s strength and balance and reduce their risk of having a fall. These can be:

• simple exercises such as walking or dancing;
• community centres and local gyms often offer training programmes specifically for older people;
• exercises that can be carried out at home;
• tai chi can reduce the risk of falls. This is a Chinese martial art that focuses on movement, balance and co-ordination. It does not involve physical contact or rapid physical movements, so it is a good exercise for older people.

See also Physical Activity Guidelines for Older Adults (NHS)

When someone has had a fall, strength and balance training programmes should be personalised for that individual person and monitored by an appropriately trained professional. In such circumstances, a GP should be consulted, who should make a referral to other services and professionals as appropriate.

2.1.3 Eye tests

Eyesight changes as people get older and can lead to a trip or loss of balance. People should make sure they have eye tests at least every two years and wear the right glasses for them, as problems with vision can increase the risk of having a fall. They should also get a test if they think their vision has got worse, even if it is before two years.

Not all vision problems can be cured, but some can be treated with surgery, for example cataracts can be removed which will improve a person’s sight.

See also Looking after your eyes (RNIB)

2.1.4 Hearing tests

Hearing also changes as people get older. Adults should get a hearing test if they think their hearing has got worse. They should also talk to their doctor, as ear problems can affect balance. It may be something which is easily treated, such as a build-up of ear wax or an ear infection, or they may need a hearing aid.

See also Hearing loss (NHS)

2.1.5 Alcohol and drugs, including prescription drugs

Drinking alcohol or taking drugs – including some prescription drugs – can lead to loss of co-ordination. Alcohol can also make the effects of some medicines worse. This can significantly increase the risk of a falls.

Avoiding alcohol or illegal drugs or reducing the amount a person drinks can reduce their risk of having a fall. People should see their GP if they think their dizziness or lack of coordination may be related to prescription medication.

See also:

Alcohol Misuse (NHS);

Drug Addiction – Getting Help (NHS).

2.1.6 Footcare

People should take care of their feet by trimming toenails regularly and seeing a GP or podiatrist (foot health professional) about any foot problems. If someone has foot pain it may cause them to walk differently or limp, which may affect balance. Wearing well-fitting shoes and slippers that are in good condition and support the ankle can also reduce the risk of having a fall:

• footwear should fit well and not slip off;
•  sandals with little support and shoes with high heels should be avoided;
• slippers should have a good grip and stay on properly;
• people should always wear shoes or slippers and not walk in bare feet, socks or tights.

2.1.7 Eating well

Having food that is nutritious, as well as tasty, helps people stay well. If people do not have a good appetite, it is better to eat little and often instead of three main meals, if they prefer. Having enough energy is important in keeping up strength and preventing falls.

See also Eat Well (NHS)

2.1.8 Drinking fluids

As well as eating well, people should make sure they are drinking plenty. Not having enough fluids may result in someone feeling light-headed, which will increase their risk of a fall. People should drink about six to eight glasses of fluid (non-alcoholic) a day.

2.1.9 Bone health

Bones can become weaker as people get older and weak bones are more likely to break if someone falls. Bones can be kept healthier and stronger by eating food rich in calcium, getting enough vitamin D from sunlight and doing some weight-bearing exercises, as mentioned above.

2.2 Environment Issues

Tips for preventing falls in the home include:

• wiping up anything that has been spilt on the floor;
• removing clutter, trailing wires and repairing or replacing frayed carpet;
• using non-slip mats and rugs;
• making sure all rooms, passages and stairs are well lit, especially when it is dark. A night light near the bed so people can see where they are going if they wake up in the night – including motion-activated light that come on as needed – are useful;
• organising the home so that climbing, stretching and bending are kept to a minimum, and avoid bumping into things so drawers and cupboards are shut immediately after use;
• the adult getting help from other people to do things they cannot safely by themselves;
• not wearing loose-fitting, trailing clothes that might catch on door handles or trip the person up

Mobile phones or alarms should always be carried, even around the house.

Personal alarms and telecare allow people to call for help, if they are unwell or have a fall and cannot reach the phone. People can wear a button on a pendant or wristband all the time, or have other technology aids, which will alert a 24-hour response centre. The staff at the centre call friends and family on the adult’s pre-decided list of contacts, or contact the emergency services.

See also Top Tips for a Comfortable Home (Age UK)

2.2.2 Avoiding a fall outside

Falls do not just happen in the home, they can occur in the garden, in the street and on outings, particularly if places are not familiar. The following should be considered to reduce risk:

• if people are wearing a mask or face covering, they should be extra careful about moving about as it can make it harder to see. They may need to slow down to reduce their risk of falling;
• people should use a walking stick, walking frame or walk with others for support if this helps them feel more confident;
• walking on uneven ground in gardens may make some people more vulnerable to losing their balance, as can reaching and stretching to do gardening jobs. Mobile phones should always be carried, especially in the garden;
•  walking dogs who may pull, even if they are small dogs, can cause people to lose balance as can dogs jumping up onto people;
•  take extra care in icy, snowy and wet weather – wet leaves and mud can also be very slippery; see also What to do when the weather’s particularly bad (Age UK).

1. What is Frailty?

The term frailty or ‘being frail’ is often used to describe older people.

People who are frail often have reduced muscle strength and so get more tired easily (fatigue). They may find it much harder to recover from health issues such as a urinary tract infection or leg ulcers.

Frailty describes a person’s overall stamina and how this relates to their chance of recovering quickly from health problems. Approximately 10% of people aged over 65 are frail. In those aged 85 and over, this increases to 25-50% (Age UK).

People living with frailty may or may not have other major health conditions. Being frail can be seen as a fairly ‘minor’ health problem, but in reality it can have a severe and long term impact on a person’s physical and mental health and wellbeing.

2. Frailty and General Health

There are a number of health conditions that are associated with being  frail. Where staff from different organisations are working with a person, their carers and family, the overall aim should be that the person’s frailty does not result in poorer health outcomes for them (see the chapters on Promoting Wellbeing and Preventing, Delaying or Reducing Needs for Care and Support). It is important that a well-planned, joined-up care package is in place to prevent problems arising in the first place and provide a rapid, specialist response if their situation changes.

Where frailty is a concern, the following should be assessed and monitored on an ongoing basis as part of the person’s care and support plan (see Care and Support Planning chapter):

• general health;
• malnutrition and dehydration;
• bladder and bowel problems;
• dementia;
• delirium (confusion);
• mental health;
• risk of falls.

2.1 General health

As people age their health needs change, but there are practical steps people can take at any age to improve their health and reduce their risk of frailty.

All aspects of a person’s health should be addressed as part of their general health needs. These include:

• looking after their eyes;
• looking after their mouth and teeth;
• keeping active;
• getting the right medicines;
• getting vaccinations;
• preventing falls;
• looking after their hearing;
• eating and drinking well;
• looking after their bladder and bowels;
• keeping mentally healthy;
• keeping their brain active.

There are other issues that affect a person’s general health, including:

• keeping warm;
• making sure their home environment is safe;
• preparing for winter as well as for heatwaves;
• caring and looking after themself.

Information about all of these issues can be found in A Practical Guide to Healthy Ageing (NHS and Age UK). 

2.2 Malnutrition and dehydration

Having a balanced diet and sufficient (non-alcoholic) fluids are essential to keep well. This is particularly important for someone living with frailty.

Malnutrition affects approximately 1 in 10 older people and is a risk factor for becoming frail. It is a serious condition where a person’s diet does not have the right amount of nutrients. This could be due to not getting enough nutrients (undernutrition) or getting more than is needed (overnutrition). Both these factors can contribute to health conditions. Nutrients are important to maintain physical health and promote healing after injury or illness.

People who are malnourished are more likely to visit their GP, have hospital admissions and take longer to recover from illness or operations. If an older person loses weight, whilst it could be due to health conditions, it may also be a result of being malnourished.

Older people are also more at risk of dehydration, where the body loses more fluid than it is taking in. Symptoms of dehydration include:

• feeling thirsty;
• having dark yellow and strong-smelling urine;
• feeling dizzy or lightheaded;
• feeling tired;
• having a dry mouth, lips and eyes;
• not passing much urine – fewer than four times a day.

Dehydration is one of the most common reasons why an older person is admitted to hospital. It is also associated with increased risk of urinary tract infections, falls and pressure ulcers.

If it is suspected that a person who is frail is malnourished or dehydrated, with their permission (or their relevant person) their GP should be informed as soon as possible.

If the person is likely to become malnourished or dehydrated, ensuring sufficient intake of nutrition and fluids should be included in their care and support plan including working with the person to ensure they have food and drink that they like and can tolerate.

2.3 Falls

Falls can be common in older people and can result in serious health issues. Once someone has experienced a fall, particularly if it has resulted in a significant injury, it can be a main cause of loss of independence and even eventually going into long-term care. After a person has had a fall, the fear of falling again can result in a loss of confidence and self-esteem which can lead to them becoming increasingly inactive, this in turn leads to a loss of strength and a greater risk of further falls.

Working with someone to prevent them falling or from having further falls can include a number of simple practical measures such as:

• making simple changes to their home;
• ensuring they have the right medication;
• ensuring they have the right prescription glasses; and
• doing regular exercises to improve their strength and balance.

See Falls Prevention (NHS)

2.4 Bladder and bowel problems

Urinary and bowel incontinence and constipation are very common, particularly in older people. However, embarrassment and stigma about these issues mean people often delay seeking help and support. These conditions in older people are often poorly managed and can cause them a lot of distress. Not enough of an appropriate diet and fluids can also impact on a person’s bowel and urinary problems.

If there are concerns that a person who is frail is suffering incontinence or constipation, they – or their relevant person – should be supported to speak to their GP.

For further information about these issues, visit the websites below:

Urinary incontinence – NHS

Bowel incontinence – NHS

Constipation – NHS

2.5 Dementia

More than 850,000 people in the UK are estimated to be living with dementia. People who are living with frailty and who also have dementia are at increased risk of poor health as a result of not being able to care for themselves adequately, particularly if they are living alone.

For further information see Dementia: Practice Guidance chapter.

2.6 Delirium

Delirium is an episode of acute confusion. It can often be mistaken for dementia, but it is often preventable and treatable. Older people are more at risk of developing delirium and it can be quite common (particularly for those who have cognitive impairment, severe illness or have broken their hip or have a urinary tract infection for example).

Older people with delirium may have longer stays in hospital, have an increased risk of complications such as falls, accidents or pressure ulcers and be more likely to be admitted into long-term care. There is also a high mortality rate associated with delirium. It is therefore very important to recognise and treat delirium as early as possible, to avoid these complications.

For further information please see these websites:

Confusion (NHS) Sudden confusion (delirium)

Delirium – sudden confusion (Dementia UK)

2.7 Mental health problems

Mental health problems such as depression and anxiety can be quite common for older people, and can have a major impact on their quality of life. Mental health problems in older adults may not be reported and so often go undetected and are therefore under-treated.

Where an adult who is living with frailty is suspected of having mental ill health issues, they may be supported to speak to their GP or other relevant agencies.

See also Your mind matters (Age UK)

 3. Related Issues

3.1 Loneliness and social isolation

Many elderly people suffer from loneliness. This can have a serious effect on their mental and physical health and wellbeing.

Loneliness and social isolation can have additional negative impact on someone who is already living with frailty. There are different ways that loneliness can be addressed, depending on the needs, wishes and interests of the person. Discussions should take place with them to see what local services are available to support them to feel less lonely and isolated.

For further information see Elderly Loneliness (Age UK)

3.2 Physical activity

The benefits of physical activity for older adults is well evidenced, with multiple health benefits including promoting general health, improving cognitive function, lowering the risk of falls and reducing the likelihood of developing some long-term conditions and diseases.

Depending on the needs, wishes, interests and physical ability of the person living with frailty, there will be different options and organisations for them if they want to get involved in activities in their local area.

See also Being Active as you get Older (Age UK)

3.3 Safeguarding

People who are frail may experience, or be at risk of, abuse or neglect. This may be a result of their frailty or in combination with other mental or physical health conditions. They may be directly targeted by perpetrators who perceive them to be vulnerable or suffer unintentional abuse. Abuse may be committed by people they know such as family, friends or carers or by strangers.

People living with frailty may experience health and social care services that are not suited to their individual needs. They can also be vulnerable to receiving poor quality healthcare and services. In such circumstances they or their relevant person should be supported to make a complaint, as appropriate, to ensure that they receive the care and support to which they are entitled. This may need to involve the local authority and / or the Care Quality Commission if there are safeguarding concerns related to a service provider. For further information see Safeguarding Enquiries Process Section.

3.4 Supporting people at the end of life

Advanced care planning is key to ensuring a person who is frail receives good, personalised care at the end of their life. People should be encouraged to have proactive discussions about their wishes for care at the end of life as early as possible and their wishes recorded. These discussions should include advance decisions to refuse treatment and do not attempt resuscitation decisions.

See the chapter on Planning Ahead for Health and Social Care Decisions.

4. Living with Frailty

People living with frailty can be supported to live as full a life as they wish and are able, although this may mean they need to adapt how they live their life and find new ways to manage daily tasks and activities. This may apply to their family and friends too.

If someone is living with frailty, it does not mean they lack mental capacity (see Mental Capacity chapter) or cannot lead a full and independent life. Just because a person is frail does not mean that they cannot make decisions about their daily life or wider issues such as finances and where they live for example. They may need some practical support to put those decisions into practice however, where they may have physical difficulties for example in achieving those goals.

Frailty can deeply challenge a person’s sense of themself as well as change how they are perceived and treated by others, including health and care professionals. Ensuring they receive person centred care and their wishes and desires are listened to and acted upon wherever possible therefore, is key to their sense of self-esteem and ongoing enjoyment of life.

 1. Introduction

Autistic adults may have been diagnosed as a child, or when they are older. Some may not have been diagnosed at all; this may be because they do not realise they are autistic, have not have wanted support or have not felt able to speak to anyone about it.

Many people learn to cope with autism in their own way, although this may not be easy. They may be married or living with a partner, have families and successful careers. Others may be socially isolated, especially if they find it difficult to spend time with family or make friends.

This chapter is a summary of some of the main issues that staff need to consider when working with an autistic adult, to help ensure their needs and wishes are identified and taken into account and adjustments are made as required so they can participate fully in decision making. It also provides additional references and website links.

2. What is Autism?

Autism affects how people communicate and interact with the world.

The cause of autism is unknown, or if in fact if there is a definite cause. More than one in 100 people are autistic, and there are around 700,000 autistic adults and children in the UK (National Autistic Society). Whilst people from all nationalities, cultural, religious and social groups and be autistic, more males are diagnosed than females, but this may be a result of under-diagnosis in females.

Autism is not an illness or disease; it cannot be ‘cured’. It is a lifelong condition, and some people feel that being autistic is an important part of their identity. Autism  may not be visible and therefore can be easily missed  (see Working with Adults with Hidden Disabilities chapter).

All autistic people can learn and develop. Getting the right support and understanding makes a huge difference to autistic people.

3. The Autism Spectrum

See also What is Autism? (National Autistic Society)

Autism is a spectrum condition; there is a wide variation in the type and severity of symptoms that people can experience. All autistic people share are affected in different ways.

Autistic people may:

• find it hard to communicate and interact with other people;
• find it hard to understand how other people think or feel, and find it how to say how they feel themselves;
• find it hard to make friends or prefer to be on their own;
• seem blunt, rude or not interested in others without meaning to;
• be highly focused on interests or hobbies;
• be over or under sensitive to smells, light, sound, taste, textures or touch, finding them stressful or uncomfortable;
• get very anxious or upset which can lead to meltdowns or shutdowns;
• take longer to understand information;
• do or think the same things over and over and feel very anxious if their routine changes, resulting in repetitive and restrictive behaviour.

Autism is not a learning disability, and autistic people can have any level of intelligence. However, autistic people may have other conditions (see Section 4, Related Conditions), which will mean they need different levels of support.

4. Related Conditions

Other conditions that can also affect autistic adults include:

• Attention deficit hyperactivity disorder (ADHD);
• dyslexia and dyspraxia;
• problems sleeping (insomnia);

• mental health problems;
• learning disabilities;
• epilepsy;
• problems with joints and other parts of the body, including:

• flexible or painful joints;

• skin that stretches or bruises easily;
• diarrhoea or constipation.

For more information on these conditions see Other Conditions that affect Autistic People (NHS)

5. Assessment and Diagnosis

If a person thinks they may be autistic and wants to speak to someone about it, they should make an appointment to see their GP. If you think an adult you are supporting may be autistic, the National Autistic Society has advice on how to discuss this with them (see Broaching the Subject).

They may be referred to a specialist for an autism assessment (see What happens during an Autism Assessment, NHS).

An autism diagnosis can be a daunting time, and may come as a shock, but for others it is a relief to find out why they think, feel and act the way they do.

Autism is not a medical condition that can be treated or cured, but following assessment, autistic people can benefit can access appropriate support and interventions, and adjustments can be made to help them stay well and have a good quality of life.

See also Newly Diagnosed: Things to Help (NHS)

Assessments and care and support plans should be reviewed and revised if it is felt that a person’s condition, or related conditions, are either deteriorating or improving. In addition, under the Equality Act 2010, services should make changes to the way they are delivered to ensure they are accessible to autistic people and people with other disabilities. The changes are called ‘reasonable adjustments’. Autistic people should always be asked if they require reasonable adjustments, and details of these should be clearly recorded and referred to each time the person accesses the service. Reasonable adjustments should be reviewed to ensure they continue to reflect a person’s circumstances.

6. Working with Autistic Adults

Autistic people can live a full life; it does not have to stop anyone having a good life. Like everyone else, autistic people have some things they are good at as well as things they find more of a challenge. A strengths-based assessment (see Section 5, Assessment and Diagnosis) should reveal these and be included in the person’s care and support plan, alongside any ‘reasonable adjustments’ to the way services will be delivered.

Everyone is different, but there are some common characteristics that staff should consider when communicating and working with an autistic person. It is important avoid making assumptions about an autistic person’s experiences or needs, every autistic person is unique and will have a specific set of strengths and needs.  Ask the person what you can do to make the process easier for them and listen to and implement their suggestions where possible.

• Personalisation: Make sure the person is at the heat of all decision making, work with them to identify their unique abilities and challenges, and then work alongside them to achieve their (self) identified needs;
• Communication: Staff should remember that the person may find it difficult to communicate and interact with other people. Staff should understand that what the person says and how they say it may well be a feature of their condition. They should give the person time to communicate and be calm and considered in their communication with them. Ask about their communication needs / preferences.
• Understanding: The adult may find it difficult to understand how other people think or feel, therefore staff should remember that they may not be deliberately unfeeling or uncaring, but they are not able consider other people in the way that others do.
• Suitable environment: Staff should ensure that any meeting or intervention with an autistic person does not take place in a noisy or over-stimulating environment. If they meet the person outside the workplace, they should find out from them what type of place they like to go, that is manageable for them and does not cause them additional stress.
• Anxiety: Autistic people can get anxious or stressed about unfamiliar situations and social events. Staff should take this into consideration when working with someone and plan interventions or meetings accordingly.
• Presenting information:  Autistic people may take longer to understand information that is presented to them. Staff should give them additional time to process information and provide it in easy read formats or give other assistance where required. They should also check with the person that they have understood what is being communicated, both at the time and also check their understanding again at later dates.

• Take time: Autistic people may do or think the same things over and over again. Staff should bear this in mind when working with autistic people, and build additional time into their meetings and visits so that the person does not feel pressured to be quicker than is comfortable for them. Attempts to rush them may result in them feeling stressed which in turn may negatively impact on other behaviours. Multiple visits may be required.
• Training: Training is important, as it helps to ensure that staff have the right skills and knowledge to be able to provide safe, compassionate, and informed care to autistic people. Under the Health and Care Act 2022 there is a requirement for regulated service providers to ensure that their staff receive training on learning disability and autism which is appropriate to their role. The Oliver McGowan mandatory training on learning disability and autism is the government’s preferred and recommended training for staff to undertake. The training is delivered in two parts: Tier 1 is for people who require general awareness of the support autistic people and people with a learning disability may need, and Tier 2 is for people who provide care and support to autistic people or people with a learning disability. Both tiers begin with an e-learning session. Employers are responsible for ensuring their staff have the appropriate training for their role, and will advise staff on whether they should complete Tier 1 or Tier 2.

7. Further Information

7.1 National organisations and sources

National organisations that provide detailed or further information include:

• • National Autistic Society 
  • Ambitious about Autism
  • Easy read information and videos about autism (NHS)

There are a number of social media pages about issues affecting autistic people. These include:

Facebook:

• National Autistic Society

X (formerly Twitter):

• National Autistic Society
• Ambitious about Autism
• Autistica

Forums and communities:

• National Autistic Society – The Autism Community
• Autism Support (HealthUnlocked)

7.2 Local support

Autism Hub (South Tyneside)

• To search for local groups use:
  • the National Autistic Society services directory;
  • the NHS where to get autism support.

1. Introduction

It is essential that workers in adult social care and partner agencies who are working with adults with care and support needs, consider and include the needs of all family members when carrying out assessments and developing plans.

There are four steps to the Whole-Family Approach:

• Step one: Think family;
• Step two: Get the whole picture;
• Step three: Make a plan that works for everyone;
• Step four: Check it is working for the whole family.

This chapter is taken from The Care Act and Whole-Family Approaches (Local Government Association et al) and provides guidance about using the Whole-Family Approach in daily practice. Whilst it is written for local authority workers, it is appropriate to everyone working with an adult receiving care and support services and their families.

2. Step 1: Think Family – Early Intervention and Prevention

Under the Care Act 2014, a whole council, whole-family approach which organises services and support around the adult and their family must be taken. It also means that everyone working with the adult and their family must think about the needs of each member of the family, including any children.

The principle of wellbeing is at the heart of this approach (see Promoting Wellbeing chapter). A vital part of an adult’s wellbeing is the situation they live in, who they live with and their family relationships. It is important to achieve a balance between their wellbeing and that of any family or friends caring for them.

A whole-family approach to promoting wellbeing and preventing need for care and support may include helping the adult and their family to think about what changes may happen in the future, and to plan for these, for example when the adult needs more care or if a carer becomes unwell for example (see Reducing, Preventing or Delaying Needs chapter).

The needs of young carers, for example a teenager who has to look after their disabled mother, are included in both the Care Act 2014 and in the Children and Families Act 2014. This is to make sure all workers involved take a whole-family approach to assessing and supporting the adult and the young carer and delivers support in a coordinated, organised way. See Annex A of The Care Act and Whole-Family Approaches (Local Government Association et al).

3. Step Two: Get the Whole Picture – Whole Family Assessment

Getting the whole picture means seeing each person as an individual, as well as recognising the part they play in their family and community. Everyone has something to contribute to addressing the adult’s needs. The Whole-Family Approach builds on everyone’s strengths and develops their resilience. It also promotes working together with carers as partners, as well as the adult and other members of the family and friends where appropriate.

Understanding the needs of the whole family and getting them to think about the outcomes they want to achieve individually, as well as a family is vital. It means the worker can then provide the right guidance, information and services.

Assessment is an important part of the process for everyone. During the assessment, the worker can give guidance and information to help the family understand the situation, their needs and strengths. This can help to reduce or delay any increase in the adult’s needs and make sure that they have support when they need it. The aim of assessment is to get a full picture of the person and their needs and goals, so any carers must be consulted. Carers are recognised in the Care Act, in the same way as those they care for.

Where an assessment does identify a potential child in need, the worker should contact their line manager to discuss the situation and a referral should be made to children’s services as appropriate (see South Tyneside Safeguarding Children procedures).

4. Step Three: Make a Plan that Works for Everyone – Developing Plans

When councils and other agencies adopt a whole-family approach to developing care and support plans, this can help to achieve the best outcomes for the whole family. Sometimes, however, a plan can have a negative impact on other members of the family, particularly carers. This is something which must be considered when plans are reviewed.

A whole family approach can also make better use of resources. Sometimes plans are needed for more than one member of the family and from different organisations, for example the Care Programme Approach if mental health services are involved. Plans should not be developed in isolation from one another but should be developed together. If everyone involved agrees, including the practitioners, plans for different family members can be combined to form a single plan in which there may be parts for individual family members as well as the family as a whole. This can be particularly important in making sure that everyone’s wellbeing is being considered and it can also be helpful in addressing any areas of conflict that arise and agreeing a way forward so that everyone achieves what they need, as far as possible.

5. Step Four: Check it is Working for the Whole Family – Review of Plans

As with assessment and care planning, wherever possible a whole-family approach to reviews should be taken. It should concentrate on the results that are being achieved by the adult and their family. Workers should consider giving others permission to conduct the review; this could be the person themselves, a carer or someone else.

Workers need to oversee the process and sign off all reviews. Sometimes a ‘light touch’ approach can be helpful in the early stages, which might include a telephone call or asking the adult or another family member to carry out a self-review to check that things are working as intended. Whatever approach is used, it should always include consider any impact of the plan on other family members.

Where the review identifies things that have changed, the plan may need to be updated to include these. Again the adult, their carer and anyone else they want included should be involved. The whole-family approach should make sure that everyone’s needs and wellbeing are considered (including any children), that there are no consequences for anyone that had not been seen in advance and that everyone agrees with the plan.

6. Tools to use with the Whole-Family Approach

Annex C of The Care Act and Whole-Family Approaches (Local Government Association et al) 

includes some practical tools for working with families which can be adapted and developed for local use. These include:

• questions to consider including in conversations at initial contact, assessment and care planning stages;
• whole-family care planning discussion questions;
• a genogram
• how to identify support networks;
• an emergency crisis plan.

Annex D also provides a checklist of key practice points.

1. Introduction

Not all disabilities can be seen from a person’s outward appearance. Hidden disabilities are sometimes also called invisible disabilities and include, for example, mental and physical health problems and developmental disabilities.

Following an investigation of three complaints against London Councils, the Local Government and Social Care Ombudsman recommended that local authorities should check their procedures to avoid disadvantaging people with hidden disabilities.  This advice also applies to all organisations working with adults with care and support needs.

In each of the cases investigated by Ombudsman, the found that the local authorities did not do enough to help people with hidden disabilities to use their services. This included not making reasonable adjustments to help a woman with autism to repay overpaid housing benefit, and not helping a man with severe dyslexia to deal with parking tickets and permits.

2. Types of Hidden Disability

Whilst there is now a better understanding of some of the conditions that constitute hidden disabilities, it is vital that all interactions with adults, including assessments, are conducted with hidden disabilities in mind. This is to ensure all relevant care and support issues affecting the adult are identified, to ensure they receive the appropriate services relevant to their individual needs. This process is vital to ensure that people with hidden disabilities are not discriminated against, as a result of their disability being missed or reasonable adjustments not being made.

The lists below are not exhaustive; there will be other physical and mental health problems and other conditions that result in hidden disabilities.

2.1 Mental health

For many adults who suffer with mental health problems, their issues may not be immediately obvious and can be misunderstood. Without good working relationships and without a member of staff undertaking a comprehensive assessment with the adult, key aspects of the care and support that they require may be missed and their problems, therefore, could be compounded. Such issues may include depression, stress, bipolar disorder, psychotic and neurotic thought processes and suicidal thoughts.

2.2 Developmental / neurodevelopmental disabilities

Other conditions which can be hidden include:

• Dyslexia (development of literacy and language related skills affected);
• Dyspraxia (perception, language and thought processes affected);
• Attention Deficit Hyperactivity Disorder – ADHD (inattentiveness and hyperactivity-impulsivity);
• autistic spectrum disorder  / ASD (communication, interaction and relationships with others can be affected).

Adults with such conditions often develop ways of coping which may make it difficult for staff to identify them as disabled. Even when someone can function well in many situations, this does not mean they are not disabled.

Issues to be aware of include:

• communication issues (verbal and non-verbal);
• understanding instructions;
• the speed at which they process things; and
• interpretation of social situations.

Some of these conditions may also co-exist with other hidden disabilities.

See Autism UK: What is Autism and Related Conditions for more information.

The Autism Act 2009 came into force in January 2010. Under the Act the Government has to publish and keep under review an Autism Strategy, as well as guidance for implementing the strategy which requires local authorities and NHS bodies to act (see Adult Autism Strategy: Supporting its Use; Department of Health and Social Care) and National Strategy for Autistic Children, Young People and Adults: 2021 to 2026 (Department of Health and Social Care and Department for Education).

2.3 Physical health issues

Not all physical health problems are clearly visible. There are many conditions which can be hidden to include hearing and sight impairments, chronic fatigue syndrome / myalgic encephalomyelitis (ME), chronic pain and chronic illnesses such as fibromyalgia, epilepsy, diabetes, kidney failure and sleep disorders.

Such conditions should also be taken into consideration as a hidden disability.

2.4 Other issues for consideration

2.4.1 Mental capacity

See also Mental Capacity chapter

Adult social care staff and other staff working with adults should be particularly mindful in considering mental capacity issues for adults with hidden disabilities when:

• assessing needs and make care planning decisions;
• conducting safeguarding enquiries;
• when there is a dispute over ordinary residence.

2.4.2 Human rights

See also Equality, Diversity and Human Rights in a Safeguarding Context chapter

Article 3 of the Human Rights Act 1998 imposes a duty to take reasonable steps to provide effective protection to children and other vulnerable persons whom the state knows or ought reasonably to know, are being subject to inhuman or degrading treatment (see also Z v United Kingdom Application No 29392/95, (2001) CCLR 310, ECHR).

3. Equality Act 2010

See also Equality, Diversity and Human Rights in a Safeguarding Context chapter

It is essential that people with hidden disabilities are not either directly or indirectly discriminated against, that is they should have the same level of assessment, care and support planning, care and support services and other opportunities as those who do not have a disability.

“The Equality Act 2010 requires councils to anticipate the needs of people who may need to access their services. This means when councils are alerted to the fact someone might need to be treated in a different way, they should ask that person what adjustments are needed, and consider whether these are reasonable…. We recognise the significant challenges faced by public service providers in adapting their processes to the needs of people who may require adjustments, particularly where the services have been automated. But this is a duty councils must meet and needs they must anticipate.” Local Government and Social Care Ombudsman

4. Working with Adults who may have Hidden Disabilities

Staff working with adults should be aware that they, or their carer, may have hidden disabilities, particularly those who are having contact with the service for the first time. It is important to not make quick judgments about a person based on initial communication.

Where there are communication issues or other factors are present that are not otherwise easily explained, staff should consider whether hidden disability / disabilities may be the cause and carry out further investigations as appropriate.

When a hidden disability is discussed with an adult and / or their carer, the member of staff should record both the discussion and the hidden disability in the adult’s case records (see Case Recording chapter). Where the adult already has a care and support plan, this may mean a review is required and adjustments to the plan may be required to respond to the newly disclosed / diagnosed disability which may change the person’s eligible care needs within the care and support plan.

5. Blue Badge Scheme

The Blue Badge scheme has been extended to include people with hidden disabilities, such as autism and mental health conditions, for example.

The criteria have been extended so that people are eligible who:

• cannot undertake a journey without there being a risk of serious harm to their health or safety or that of any other person;
• cannot undertake a journey without it causing them very considerable psychological distress;
• have very considerable difficulty when walking (both the physical act and experience of walking).

This is particularly important for adults who find leaving their house a challenge. This may involve detailed preparations and sometimes overwhelming anxiety about plans going wrong or not being able to find parking spaces. Some autistic people might be unaware of road safety issues or become overwhelmed by busy or loud environments.

For further information see: Running a Blue Badge parking scheme: Guidance for local authorities (UK Government)  and Blue Badge Scheme (South Tyneside Council)

6. Hidden Disabilities Sunflower Lanyard

This is a symbol a person can wear if they have a hidden disability, or on behalf of somebody that does. For example, parents or carers may choose to wear lanyards for the people they support.

A lanyard helps to inform others, health professionals and members of staff in public places, that the person wearing it or someone with them has a hidden disability – this includes autism, chronic pain, dementia, hearing impairment.

Hidden disabilities that are eligible for sunflower lanyard include:

• a learning disability;
• sensory loss, including difficulty seeing or hearing;
• dementia including Alzheimer’s disease;
• autism;
• anxiety or any other mental health condition;
• a physical disability that may not be obvious.

See The Hidden Disabilities Sunflower Lanyard scheme.

7. Training and Awareness

Local authorities and other service providers should ensure they have a disability policy, ensure that staff are aware of hidden disabilities and know how to respond appropriately.  It should be addressed as part of general equal opportunities training.

Other associated training to consider include:

• autism awareness;
• disability awareness;
• mental health awareness.

See NHS Learning Disability Employment Programme.

1. Introduction

As people get older, they may have problems with loss of memory. While it is normal for memory to be affected by factors such as age, stress, tiredness, menopause and certain illnesses and medications, there could be underlying medical reasons for these memory issues – such as a dementia – that require investigation and treatment.

The following statistics relate to dementia in the UK:

• there are currently an estimated 1,000,000 people living with dementia;
• the number of people with dementia is predicted to rise to 1.4m by 2040;
• one in 14 people aged over 65 have dementia. This rises to one in six for those aged over 80;
• the financial cost is £42 billion per annum;
• women are more likely than men to develop dementia in their lifetimes, partly due to the fact that women live longer than men.

(Alzheimer’s Society; Dementia Statistics Hub).

2. What is Dementia?

Dementia is a common condition which is more likely to develop with age, usually occurring in people over the age of 65.

It is a syndrome (which is a group of related symptoms) associated with an ongoing decline of brain function. It affects:

• memory loss;
• thinking speed;
• mental agility;
• language;
• understanding;
• judgement.

An adult with dementia may experience different mental changes. This can include losing empathy with other people, hearing or seeing things that are not real (auditory or visual hallucinations), becoming up and down in their mood (being less emotionally stable), not having any interest in things and losing interest in past activities. Social situations may become more difficult as their personality changes.

Where there are concerns that an adult with dementia no longer has mental capacity, safeguards should be put in place to ensure decisions are made in their best interests (see also Mental Capacity chapter).

The speed at which a person’s symptoms get worse and the way their condition develops depends on the cause of the dementia, as well as their overall health. This means that the symptoms, the rate of progress and experience of dementia are different for each person. There is currently no cure for dementia. However, there are treatments for dementia, including medication, that can help with managing symptoms

An adult who is experiencing a number of the symptoms related to dementia may find it difficult to continue being independent and may need help from family or friends, including help to make decisions.

If a person – or their family or friends – is worried that they may be developing dementia, they should see their GP.  Following investigations, early diagnosis can help people get the right treatment, care and support and help those close to them to prepare, access support for themselves and plan ahead. With treatment, care and support many adults can lead active and fulfilled lives.

3. Different Types of Dementia

3.1 Alzheimer’s disease

Alzheimer’s disease is the most common cause of dementia, it causes changes to the chemistry and structure of the brain, which results in brain cells dying off. Common symptoms of Alzheimer’s disease and other forms of dementia include:

• memory loss – especially recent events, such as forgetting messages, remembering routes or names and asking questions repetitively;
• increasing difficulty with everyday tasks and activities;
• becoming confused in places they don’t know / don’t know well;
• having difficulty finding the right words;
• having difficulty with numbers and / or paying in shops, particularly with cash;
• changes in personality and mood;
• feeling depressed.

Early symptoms of dementia (sometimes called cognitive impairment) are often mild and may get worse very gradually. This means that some people – and their family and friends – do not notice them or take them seriously for quite a while.

3.2 Vascular dementia

Vascular dementia is caused when the oxygen supply to the brain fails and brain cells die as a result. This can either happen suddenly such as after a stroke, or over time  as a result of a number of small strokes. Symptoms can start quite suddenly and quickly get worse, although they can also develop gradually over many months or years.

People with vascular dementia may also experience stroke-like symptoms, including weakness or paralysis on one side of their body.

3.3 Dementia with Lewy bodies

This form of dementia is caused by tiny round structures that develop inside nerve cells in the brain, which leads to a deterioration of brain tissue. Dementia with Lewy bodies has many of the symptoms of Alzheimer’s disease, but people with the condition also usually experience:

• periods of being awake or drowsy, or fluctuating levels of confusion;
• seeing things that are not there (visual hallucinations);
• becoming slower in their way they move.

3.4 Frontotemporal dementia

In this type of dementia, damage usually occurs in the front part of the brain, so an adult’s personality and behaviour are more affected to start with than their memory. An adult with this type of dementia may become less sensitive to other people’s emotions, perhaps seeming cold and insensitive. They may also behave in a way that is out of character for them, such as making inappropriate comments. Some adults also experience language problems, which may result in them not speaking, speaking less than usual or having problems finding the right words.

4. Symptoms in Later Stage Dementia

As dementia progresses, memory loss and difficulties with communication often become severe. In the later stages of their life, the affected adult is unlikely to be able to care for themselves and will require constant care and attention.

• Memory symptoms: adults may not recognise close family and friends, remember where they live, know where they are, and find it impossible to understand simple bits of information or carry out basic tasks or follow instructions.
• Communication problems: adults may have increasing difficulty speaking and may eventually not be able to speak at all.
• Mobility problems: adults may become less mobile, eventually becoming unable to walk and may be mostly in a bed and / or chair.
• Incontinence: urinary incontinence is common (wetting), and some people will also experience faecal (bowel) incontinence.
• Eating, appetite and weight: losing their appetite and having difficulties eating or swallowing are common. This may lead to choking, and an increased risk of chest infections. People with these problems may lose weight as well.

As well as issues of mental capacity, care should be taken to make sure the adult’s human rights are not breached if they lack capacity to consent to care and treatment (see the chapters on Mental Capacity, Deprivation of Liberty Safeguards and Equality, Diversity and Human Rights in a Safeguarding Context).

5. Adults with Care and Support Needs

Getting a dementia diagnosis is a frightening time, and receiving the right treatment and care and support early when a person first shows symptoms, are some of the key points in the Care Act 2014 (see Promoting Wellbeing).

Whilst an adult with an early diagnosis of dementia may not require care and support services, they will inevitably do so as the disease progresses. Their carers may also require assessment and a support plan from the local authority.

Some adults with dementia will be self-funders, when care and support is paid by them or a family member for example. They may not then want an assessment by the local authority.

Where an adult is assessed by the local authority, a care and support plan should be developed with them, to make sure that they are able to state what their needs are and what they want to happen wherever possible, as well as those of their carer (see Care and Support Planning chapter).

6. Carers

See also Carers chapter

Dementia is a very distressing illness for the person’s family and friends, as well as the person themselves. They often see the personality and abilities of their loved one change so much, sometimes to the point of being unrecognisable to how they were before. For couples who have been together a long time, for example, it is very upsetting when their partner or spouse no longer recognises them, or the person physically or verbally abuses them.

When adults with dementia are being looked after at home by family or friends, it is very important that they receive all the multi-agency support needed to be able to best care for them for as long as they are able. This should include an assessment by the local authority if they wish, and the development of a support plan for the carer to put in place to support them to continue caring for their loved one, if this is what they wish to do. This may include home visits from care workers to help with care and support needs, day centre placements, short breaks in residential homes or having someone live in at home whilst they go on holiday.

Carers may feel a range of emotions, including not wanting their loved one to go into long-term care, when in reality they are struggling to cope looking after them at home. A review of the carer’s support plan should include discussions about the longer term future for the adult and their carer, Staff should sensitively discuss with them what may happen, and any preferences they may have, if there comes a time when they can no longer care for the adult.

Both the adult’s care and support plan and the carer’s support plan should include plans for what should happen if the carer cannot care for the adult on either a short term (illness for example) or permanent basis, including planning for what may happen in an emergency situation.

7. Making Advance Decisions

People can make some decisions in advance to make sure their wishes and views are respected should they lose mental capacity in the future, as a result of dementia for example. This includes decisions about their health care treatment and authorising lasting power of attorney in relation to their health and welfare and / or property and financial affairs. See the chapter on Planning Ahead for Health and Social Care Decisions.

8. Safeguarding Adults with Dementia

As discussed above, common symptoms for adults with dementia include memory loss, disorientation, confusion, communication difficulties, behavioural issues, low mood and cognitive impairment. One or more of these factors can put an adult who may be at risk of suffering or experiencing abuse or neglect.

They are vulnerable to abuse or neglect because:

• dementia can affect a person’s ability to communicate or can make them confused, so they may be unable to tell anyone about what is happening to them;
• they may not be able to manage their own financial affairs, Icf an unsuitable person takes this over for them, it gives them opportunity to steal money or other possessions;
• they can be susceptible to psychological or physical abuse because carers cannot cope – either on a temporary or long term basis – and for example become angry, shout, care for them roughly or are otherwise unkind;
• they can be targeted by abusers who take advantage of their condition and know they may be unable to refuse them or give in to people who are bossy and over-bearing;
• the adult may forget about the abuse that has happened and not tell anyone.

As the condition progresses and the adult’s ability to self-protect will lessen.

Where there are safeguarding concerns, see the Safeguarding Enquiries Process section.

9. Dementia and Domestic Abuse

This can include both situations where there has been domestic abuse in the relationship before one of the adults was diagnosed with dementia, and situations where there had been no history of domestic abuse within the relationship prior to the dementia diagnosis. Dementia can change the nature of previously positive relationships.  Where a relationship has been positive in the past, displays of aggression by the person with dementia may be due to changes in their brain, pain, confusion, or fear.

Where domestic abuse and dementia co-exist, practitioners may miss signs of dementia or mistake them for signs of ageing, increasing the risk of harm to the older victim-survivor.

Domestic Abuse and the Co-existence of Dementia (Centre for Age, Gender and Social Justice, Aberystwyth University) contains a toolkit which has been developed using findings from research. The toolkit aims to address gaps in practitioners’ knowledge on the co-existence of domestic abuse and dementia and offers practical information and advice to help practitioners engage with victim-survivors who are living with dementia. A safety planning tool is also available in the publication.

10. Training and Supervision

Training should be available for all staff working directly with adults with dementia, but also to other frontline staff to ensure they have an awareness and understanding of the issues that are important for both adults and their carers when managing the person’s symptoms.

This is particularly important considering the expected rise in the number of people who will be affected by dementia over the next 10 years.

Staff supervision sessions need to recognise the difficulties that working with adults with dementia can present for staff, who are involved in supporting both them and their carer. The symptoms of dementia can result in behaviour that is difficult to manage, whilst also being emotionally distressing for the individual member of staff.

Support for these issues needs to be available for staff through supervision, as well as external sources of specialised support where required.

1. Introduction

Some adults with care and support needs, and their carers, may require the services of an interpreter, signer or another professional who has specific communication skills. This may be as a result of not having sufficient comprehension or command of spoken English or other communication difficulties, as the result of hearing problems or learning or physical disabilities for example.

Adults and carers with specific communication needs should be supported to access interpreters, signers and other communicators to ensure  their needs are met, their wellbeing promoted and their needs prevented, reduced or delayed (see Promoting Wellbeing and Preventing, Reducing or Delaying Needs for Care and Support). This includes adults and carers who are involved in the safeguarding process. The use of interpreters, signers or other communication aids must be considered at the very beginning of the safeguarding process to ensure that the adult is included and involved in the process, as much as possible. They should receive the same level of service as those in the local population who do not have communication needs.

2. Principles of Communication Services

There are a number of main principles that should be considered when a person has communication needs:

• family members should not be used as interpreters / communicators;
• neither should children (within the family or extended network) should not be used as interpreters / communicators;
• the person acting as the interpreters / communicator should be acceptable to both the adult / carer and the local authority;
• the adult / carer should be consulted in relation to any concerns they may have about an interpreter’s / communicator’s gender and / or religion, and issues of confidentiality and potential conflicts of interest;
• the interpreter / communicator should declare in advance of providing the service if they have any personal knowledge of the adult / carer;
• the interpreter / communicator should also be asked in advance about any needs they may have themselves, for example disability access, water and so on
• the importance of confidentiality should be discussed with the interpreter / communicator prior to them first meeting the adult / carer. They should be sourced from an agency who is already contracted with the local authority and where there is an existing confidentiality agreement. If this is not possible, they must sign a confidentiality agreement prior to undertaking any work;
• the role of the interpreter / communicator is to act solely in relation to issues of communication, not as a mediator between the adult / carer and the local authority;
• the interpreter / communicator should be briefed before the meeting. This may include preparing them for possible disclosure and discussion of sensitive or harrowing information. They should also be briefed if an advocate will also be present (see Independent Advocacy and Independent Mental Capacity Advocates and Independent Mental Health Advocates).

Decisions about the way in which the interpreter / communicator will be used will depend on their skills and training, the needs of the adult / carer and the purpose of the meeting.

Staff working with interpreters / communicators should not use them to obtain information about racial, cultural, religious or language issues. This is not a proper use of an interpreter; also their mores and life experiences may not necessarily reflect those of the adult / carer.

1. Introduction

Good case recording is a vital component of professional practice. It supports continuity of care, risk assessment and risk management, and documents thinking, decision making and actions taken. It is a professional aid to planning and analysis. Case files are also legal documents providing an evidence trail of the work done with an adult, and their carer.

Good case recording includes a record of:

• views of the adult and their carer;
• work that has been undertaken;
• the adult’s life history;
• progress adults make towards their desired outcomes;
• decisions made and reasons for those decisions;
• actions undertaken and reasons for those actions;
• professional assessment and analysis of risk.

Learning lessons from past mistakes and missed opportunities highlighted in Safeguarding Adult Reviews (see Safeguarding Adults Reviews chapter), Child Safeguarding Practice Reviews and other review reports have emphasised the need for good quality case recording especially when managing abuse, neglect and risk. This includes providing rationales for actions and decisions, whether or not they were taken, and if not the reasons for this.

Quality recording of adult safeguarding work not only helps to keep adults safe, but also protects workers by evidencing decision making based on information which was available at the time.

Case records are also a vital tool to enable staff to reflect on their practice and identify any gaps for support or development. They should be used as part of supervision, in conjunction with supervisors / managers (see Supervision chapter)

South Tyneside SAB will regularly review the quality of recording as part of its performance and quality data scrutiny.

The Local Government and Social Care Ombudsman in its report Good Record Keeping stated that:

‘Care providers should ensure:

• all care records are accurate, honest and comprehensive
• all staff are familiar with the recording system used
• records are updated with new information in a timely way

Any gaps in records cast doubt on the integrity of the whole care provider record. This may lead us to criticise the provider and make recommendations for apologies, training and practice changes.’ (LGSCO, p 5)

Although the report is focused on care providers, these key messages apply to all organisations.

1.1 Access to records

Practitioners should be mindful that adults, or their representatives, can request access to their files at any time. Records should, therefore, be made in line with the guidance in Section 4, Case Recording Checklist).

Case records may also be made available to the courts in the event of a safeguarding or criminal enquiry.

1.2 Using case records to support practice

Good record keeping is a vital practitioner practice tool, enabling staff to reflect on their practice, demonstrate their thinking, the rationale behind decision making, analysis of complex situations and management oversight.

The case record is not simply a record of what is happening; it should be actively used as a tool to provide a professional analysis of the situation and to develop plans to support the adult and carer.

The use of genograms, chronologies and assessment records can help organise and analyse information.

Good record keeping enables managers to identify practice gaps and ensure additional support or development opportunities are offered to staff.

Management review of adults records with their staff should be a routine part of supervision and appraisal (see Supervision chapter).

2. How Should Information be Recorded?

Social care and health staff will often be working with adults with complex needs and their carers, over a period of time. In such situations it is crucial recording is well structured in order to ensure readability, and also to allow analysis and practitioner assessments to follow on from evidence based content.

Principles of case recording include:

• professionals must ensure records are accurate and up to date and kept in line with the recording keeping guidance of their own organisation and / or professional body;
• records should be written with the readership in mind. They should be drawn up in partnership with the adult, and easy for them to read and understand;
• language should be plain, clear and respectful, keeping jargon to a minimum;
• the record should clearly separate fact from opinion;
• there should be a clear link between evidence recorded and actions planned / recommended;
• if handwritten, records must be legible and in black ink;
• any alterations to handwritten records must be made by drawing a single line through the word, and correction fluid must not be used.

3. What Information should be Recorded?

The following information should be documented in each adult’s records:

• biographical details;
• history;
• facts;
• events;
• ongoing work including discussions with other agencies and professionals, telephone calls / emails and responses to these;
• actions taken and in relation to them the adults wishes, feelings, views and understanding of the actions should be recorded;
• decisions made;
• plans and contingency plans;
• professional analysis / assessment  of evidence rationale for these and recommendations.

4. Case Recording Checklist

Best practice in case recording should ensure:

• completeness: all information relevant to the adult and their circumstances should be recorded. All action plans, decisions and key conversations and phone calls / emails / text messages should be recorded;
• openness: adults or their representatives can request access to their file at any time;
• accuracy: all content must be accurate, facts must be distinguished from opinion;
• the adult’s voice: records should be drawn up in partnership with the adult and record their views, in their own words where appropriate, including whether they have given permission to share information. The adult’s voice should not be ‘missing’ from the case record. Practitioners may inadvertently focus on the views of a carer who may be more vocal, rather than the adult who may have difficulty expressing themselves;
• up to date: records should be up to date and written up as soon as possible;
• management oversight: records should be regularly reviewed by managers. Management involvement in casework should be clear, and decisions and recommendations dated and signed off by the relevant manager
• summaries / continuity of care: large files should be summarised at regular intervals as the size of the record may otherwise make it difficult to manage. Important information should be highlighted and regular summaries / transfer summaries included, to make it easier to read and hand over from one member of staff to another;
• decision making: files must include a record of decisions taken and reasons for them;
• chronology of significant events: this should be included in the record;
• partnership working: records should show evidence of partnership working between staff, other professionals, other agencies, adults and their carers;
• communication needs / reasonable adjustments: any communication needs or reasonable adjustments which are required should be clearly addressed within the record;
• risk management and contingency planning: records should incorporate assessment, including risk assessment and contingency plans where appropriate;
• equalities: the record should contain information on the  adult’s ethnicity, gender, religion, language, and any disabilities;
• security: all records must be kept securely and shared in accordance with data protection principles.

5. Adult Safeguarding

All agencies should keep records of any safeguarding adults concerns, in line with their own agency’s recording policies.

Care providers who are registered with the Care Quality Commission (CQC), must share records of safeguarding adults concerns with service commissioners and the CQC so they can review and take any action which may be required as a result.

In general, where there are safeguarding concerns regarding an adult, records should show:

• date and circumstances of concerns and subsequent action;
• a full assessment including past incidents, concerns, risks and any patterns, as abuse and neglect often arise over a period of time, including risk assessments and risk management plans;
• if the alleged abuser is using care and support services themselves, information about their involvement in a safeguarding enquiry, including the outcome, should be included in their case record;
• if it is assessed that the adult continues to pose a threat to other people, this should be included in any information that is passed on to service providers or other people who need to know;
• all contact with any adults at risk of, or experiencing abuse or neglect, and alleged perpetrators must be recorded;
• feedback from the adult and their personal support network, using the adult’s own words where appropriate;
• recording the exact words of alleged perpetrators;
• all consultations with a line or senior manager;
• consultations and correspondence with key people;
• decision making processes and rationales;
• advocacy and support arrangements;
• if a decision is made not to contact the police in the case of an adult at risk of, or experiencing abuse or neglect, the details of why this decision was made and on whose authority must be recorded;
• those who attend key meetings and safeguarding meetings must be documented;
• the decisions taken at all meetings must be recorded;
• safeguarding plans;
• outcomes;
• differences of professional opinion;
• referrals to professional bodies;
• if no investigation is to take place, the reasons why and on whose authority this decision was taken must be recorded;
• use a body map to illustrate physical injuries or pressure ulcers etc, when necessary.

1. Advance Care Planning

Advance Care Planning (ACP) is a process of discussions which an adult can choose to have with their care providers about their preferences and priorities for their future care, while they have the mental capacity to be able to have such meaningful conversations. The process, which is person-centred and likely to involve a number of conversations over time, should include whoever the adult wishes to involve, including family members or friends.

The process will enable the adult to feel more involved in their care and treatment and gives them the opportunity to reflect and share with those involved what matters most to them.

The result of these discussions may include the adult deciding one, or more, of the following:

• an advance statement – of their wishes, preferences and priorities, and may include agreeing who would be their named spokesperson (see Section 2, Advance Statements);
• an Advance Decision to Refuse Treatment (see Section 3, Advance Decision to Refuse Treatment);
• nominating a person to be their Lasting Power of Attorney for health and welfare who is legally able to make decisions on their behalf, including life sustaining treatment if the adult does not have mental capacity at that time (see Section 5, Lasting Powers of Attorney, Court Appointed Deputy, Court of Protection and Office of the Public Guardian);
• treatment recommendations such as what treatment they may want in specific situations such as emergency care, needing resuscitation etc (see Section 4, Do Not Resuscitate).

1.1 Universal principles

The following are the universal principles of ACP and describe ‘what good looks like’ in advance care planning:

1. The adult is central to developing and agreeing their advance care plan including deciding who else should be involved in the process.
2. The adult has personalised conversations about their future care, focused on what matters to them and their needs.
3. The adult agrees the outcomes of their advance care planning conversation through a shared decision making process in partnership with relevant professionals.
4. The adult has an advance care plan which records what matters to them and their preferences and decisions about future care and treatment, that they can share with others.
5. They have the opportunity, and are encouraged, to review and revise their advance care plan.
6. Anyone involved in the adult’s advance care planning process is able to speak up if they feel that these universal principles are not being followed.

2. Advance Statements

An advance statement is a written statement that sets down a person’s preferences, wishes, beliefs and values regarding their future care. Its aim is to provide a guide to anyone who might have to make decisions in the person’s best interests if they lose the ability to make or communicate decisions.

A health or social care professional making a best interests decision on behalf of an adult who lacks mental capacity must take into account any advance statement that has been made, as laid down in the Mental Capacity Act (MCA). However, the advance statement is an expression of the adult’s preference and is not legally binding for a health or social care professional.

It may be difficult to challenge a professional’s decision to disregard the adult’s wishes, because they can argue they have considered  the advance statement but were acting in the person’s best interests (see Best Interests chapter).

3. Advance Decision to Refuse Treatment

An advance decision is different from an advance statement. An advance decision is a document which contains a statement that stands even if the person’s life is at risk; such as where they have refused life sustaining (continuing) treatment. This is laid out in the MCA.

The advance decision is designed to express the desires of a person who may later lack mental capacity to refuse all or some medical treatment and overrides the best interests test. It is legally binding provided the criteria under the MCA are met. In relation to refusal of treatment, the advance decision must be:

• written;
• made when the person has capacity;
• made by a person over the age of 18 years and has been witnessed.

The MCA says the advance decision is not applicable to life sustaining treatment unless “it contains a statement … that it is to apply … even if the life is at risk”.

The advance decision is not applicable to life sustaining treatment unless:

• the treatment is not the treatment specified in the advance decision;
• any circumstances specified in the advance decision are not present;
• there are reasonable grounds for believing that circumstances exist which the person did not anticipate at the time they made the advance decision and which would have affected their decision had they anticipated them.

An advance decision is not valid if the person:

• withdraws the advance decision when they have mental capacity;
• has created a lasting health and welfare Power of Attorney after the advance decision was made which gives the attorney power to make decisions regarding life sustaining treatment (see Section 5, Lasting Powers of Attorney, Court Appointed Deputy, Court of Protection and Office of the Public Guardian);
• has done something which is clearly inconsistent with the decision.

Practitioners should be clear that advance decisions are different from advance statements.

3.1 End of life

At end of life, the best interest test applies when a patient does not have the mental capacity to make their own decisions (see Best Interests chapter). This can be a result of losing mental capacity (see Mental Capacity chapter), or through a loss of consciousness (temporary or permanent). It will cover decisions relating to palliative care (in the case of serious or life-threatening disease) and withdrawing treatment.

In the absence of a legitimate advance decision or health and welfare Lasting Power of Attorney (LPA), the decision on which treatments should or should not be provided should be made by the healthcare professionals, not the person’s relatives.

The healthcare professional must decide what is in the person’s best interests, taking all the relevant medical and non-medical circumstances into account.

4. Do Not Resuscitate

Do not attempt cardiopulmonary resuscitation (DNACPR) decisions (NHS Website)

DNACPR stands for do not attempt cardiopulmonary resuscitation. DNACPR is sometimes called DNAR (do not attempt resuscitation) or DNR (do not resuscitate) but they all refer to the same thing

Everyone has the right to refuse Cardiopulmonary Resuscitation (CPR) if they do not want to be resuscitated, if they stop breathing or their heart stops beating.

Where the do not resuscitate decision has been made in advance, it will be recorded on a special form and kept in the person’s medical records. A DNACPR order is not permanent; it can be changed at any time.

People’s views and wishes may also be recorded in their Last Powering of Attorney (see Section 5 or Advanced Decision documents (see Section 3).

People who have a serious illness or are undergoing surgery that could cause respiratory or cardiac arrest, should be asked by a member of the medical team about their wishes regarding CPR if they have not previously made their wishes known. This should take place before they have surgery.

People should always be advised to discuss such decisions with their family or other carers, so that it is not a surprise to them should the situation arise.

If the person does not have the mental capacity to decide about CPR when a decision needs to be made (see Mental Capacity chapter) and has not made an advance decision to refuse treatment, the healthcare team should consult with their next of kin about their wishes so a decision can be made in their best interests (see Best Interests chapter).

Medical staff have a legal duty to consult and involve patients in a decision to place a ‘Do Not Resuscitate’ (DNR) order on their medical notes. Patients should always be involved in a DNR decision. There must be a convincing reason not to involve the patient, otherwise a failure to consult with them may breach their human rights. Causing potential distress to a patient is not a good enough reason not to consult with them.

5. Lasting Powers of Attorney, Court Appointed Deputy, Court of Protection and Office of the Public Guardian

5.1 Lasting Power of Attorney

Any person who has the mental capacity to understand the nature and implications of doing so may appoint another person/s to look after their affairs on their behalf. This can cover either all their affairs or be limited to specific issues. This power can be changed by the donor (the person) at any time.

A Lasting Power of Attorney (LPA) is a legal document which allows an adult to appoint an attorney to act on their behalf if they should lose mental capacity in the future. It enables the person to instruct an attorney to make decisions about their property and affairs and / or health and welfare decisions. Attorneys, in this case, can be family members or friends, who have to be registered with the Office of the Public Guardian. See Make, register or end a lasting power of attorney (gov.uk).

5.2 Court Appointed Deputy and Court of Protection

A Court Appointed Deputy is appointed by the Court of Protection (CoP). The Court of Protection has authority to make decisions on financial or welfare matters for people who cannot make decisions at the time they need to be made (because they lack mental capacity). Depending on the terms of their appointment, Court Appointed Deputies can take decisions on welfare, healthcare and financial matters as authorised by the CoP but they are not able to refuse consent to life sustaining treatment.

Any decisions made by the CoP can be challenged; for example where it is believed that a deputy is not acting in the best interests of the person they are representing and there are safeguarding concerns as a result.

5.3 Office of the Public Guardian

The Office of the Public Guardian (OPG) is the body which registers authority for LPAs and court appointed deputies. It supervises deputies appointed by the CoP and provides information to help the CoP make decisions. The OPG also works with other agencies, for example the police and adult social care, to respond to any concerns raised about the way in which an attorney or deputy is behaving.

5.4 Abuse by an Attorney or Deputy

Anyone who has concerns about the actions of a person who is a registered LPA, or a deputy appointed by the CoP, they should contact the OPG. The OPG can investigate their actions  and can also refer concerns to other relevant agencies. For more information see Report a concern about an attorney, deputy or guardian (gov.uk).

1. Introduction

Risk is part of everyday life and,

“people with disabilities, both mental and physical, have the same human rights as the rest of the human race. It may be that those rights have sometimes to be limited or restricted because of their disabilities, but the starting point should be the same as that for everyone else” (Lady Hale, 2014) ( P v Cheshire West & Chester Council & another; (2) P & Q v Surrey County Council (Supreme Court).

Risk management is part of everyday practice when working with adults who have care and support needs; it enables practitioners to help to keep people safe and support them to live full and rewarding lives. Within any risk assessment framework, the aim is to support adults so that they can achieve the outcomes that matter to them most and live the lives they want to lead. Strengths based risk assessment helps to promote individual wellbeing and support adults to make their own decisions and choices.

Not all risks can be eradicated, but they can be managed to prevent or reduce the impact of harm.

Some risks are general and some specific, but risks should be defined in relation to a specific situation, that is, what is the presenting risk and /or who or what is the risk. Undertaking a comprehensive risk assessment involves collating and evaluating evidence – balancing possible positives of a course of action against potential drawbacks – and using professional judgment to ascertain the potential for the occurrence of harm.

2. Managing Risks

Responses to risks must be proportionate and use the least restrictive option/s available.

Points to consider include:

• What is the issue which a restriction on the person’s rights seeks to address?
• Will the restriction reduce the risk of likely harm?
• Does a less restrictive alternative exist, and has it been tried?
• Does that restriction involve a blanket policy, or does it allow responses to be tailored to individual adults and their own risks and circumstances?
• Have the views of the adult been taken into account?

All adults have human rights, and these can only be restricted where there is a lawful basis for doing so. Adults with care and support needs should be supported to be as independent as possible, so they can take full part in leisure and sporting activities, go to college or work, and spend time with their friends and families. Finding the balance between risk and protection is vital if people are to live fulfilling and rewarding lives.

3. Positive Risk Taking

Positive risk taking is about identifying the potential benefit or harm which could result from an adult’s choice or decision, and looking for ways to reduce the risk of any harm identified. It then involves weighing up the expected benefits against the risk of harm which remains.

Positive risk taking requires:

• recognising the adult’s right to make their own decisions and to take risks;
• involving adults, families, carers and advocates;
• understanding and building on the adult’s strengths;
• helping adults to learn from their experiences and understand the consequences of different actions;
• being honest about potential risks and benefits;
• taking a proportionate response, which is tailored to the adult’s individual wishes and circumstances;
• making informed choices based on all the information available.

See also “What good is it making someone safer if it merely makes them miserable?” A contested hearing and delayed trial of living at home – Promoting Open Justice in the Court of Protection.

4. Identifying Risks

Possible risk can include:

• concerns about the adult’s physical environment, for example unsafe home conditions;
• issues related to mental health or mental capacity such as confusion, wandering away from where they should be, leaving the gas on;
• health issues, including not managing medication, poor nutrition and risk of falls;
• poor care / possible breakdown in caring arrangements;
• abusive relationships and exploitation including emotional, physical, financial or sexual abuse or neglect.

Risk should be considered in terms of the likely risk to:

• the adult;
• others including care staff, carers, visitors and social workers;
• the wider community including neighbours or other residents of the area or care home.

Any concerns that an adult may be experiencing, or at risk of, abuse or neglect should be shared with the Safeguarding Adults Team.

In situations where adults have complex lives, it is important that the risk does not become normalised. For example, the Second national analysis of Safeguarding Adult Reviews: April 2019 – March 2023 (Local Government Association) notes:

X was in frequent contact with a number of agencies, making 41 999 calls in the eleven months prior to his death. This, combined with his alcohol use, appeared to result in the normalisation of risk, missed opportunities to identify self-neglect and the risk of harm from others and the inability to see him as a whole person or to recognise how vulnerable and isolated he was’.

4.1 Involving the adult

Making Safeguarding Personal (MSP) stresses the importance of keeping the adult at the centre of the process. Under MSP the adult is best placed to identify risks, provide details of their likely impact and whether or not they find the mitigation acceptable. Working with the adult to lead and manage the level of identified risk creates a culture where:

• adults feel more in control;
• adults are empowered and have ownership of the risk;
• there is improved effectiveness and resilience in dealing with a situation;
• there are better relationships with professionals;
• good information sharing to manage risk, involving all the key stakeholders;
• key elements of the adult’s quality of life and wellbeing can be safeguarded.

5. Assessing Risks

Risk assessments do not intend to eliminate risk, however there needs to be a balance between protecting the adult and supporting risk taking. The likelihood of the risk and its potential consequences for the individual adult should be considered. The aim of the process is to enable the adult to live the life they want, as independently as they can.

5.1 Strengths-based approach

The adult should be fully involved in the risk assessment process. Practitioners should support them to identify any risks and possible solutions; this will include discussion about why the activity associated with the risk is important to them and the impact it would have on them if they could not do it.

The risk assessment should start with the adult’s strengths and include information from a variety of sources (including their family, carers and any advocate appointed) and other agencies who also know the adult where appropriate. This helps to ensure a balanced approach, which is person centred. Any historic information that practitioners receive is important but should always be considered alongside the adult’s current wishes and likely risks.

If the adult lacks mental capacity to make decisions, the risk assessment must take account of the views of family members or friends important to the adult and who have an interest in their welfare or, where appointed, their Attorney or Independent Mental Capacity Advocate (see Independent Advocacy and Independent Mental Capacity Advocates and Independent Mental Health Advocates).

A multi-disciplinary approach should form the basis of the risk assessment process. Information should be collated from a variety of sources and agencies. Contributions from agencies such as the police, probation and the adult’s GP should always be considered at each stage in the process.

Assessment of risk is dynamic and ongoing, and a flexible approach to changing circumstances is needed. The primary aim of a safeguarding adults risk assessment is to assess current risks that people face and potential risks that they and other adults may face. Specific to safeguarding, risk assessments should encompass:

• the history including patterns of behaviour/previous incidents, non-compliance with services;
• the severity of the risk;
• the views and wishes of the adult and their motivation to manage the situation;
• the person’s ability to protect themselves;
• factors that contribute to the risk, for example, personal, environmental
• the risk of future harm from the same source;
• identification of the person causing the harm and establishing if the person causing the harm is also someone who needs care and support;
• deciding if domestic abuse is indicated and the need for a referral to a MARAC (see MARAC Referral Form);
• deciding if a multi-agency complex panel meeting is needed;
• identify people causing harm who should be referred to MAPPA;
• it may increase risk where information is not shared.

5.2 Review

Risk assessments should be regularly reviewed. Practitioners need to respond to change, as an adult – or their carer’s – circumstances can change. Interventions can increase risk as well as decrease it highlighting the importance of regular reviews.

5.2 Recording

Recording of the risk assessment should be structured with the identification of each risk in order of priority, and the likelihood of the risk and its impact.

6. Risk Management

The focus must be on the management of risks not just a description of risks. Employers need to take responsibility for the management of risk within their own organisation and share information responsibly where others may be at risk from the same source. The local authority may be ultimately accountable for the quality of Section 42 Care Act enquiries, but all organisations are responsible for supporting holistic risk management, with the adult and in partnership with other agencies.

It is the collective responsibility of all organisations to share relevant information, make decisions and plan interventions with the adult. A plan to manage the identified risk and put in place safeguarding measures includes:

• what immediate action must be taken to safeguard the adult and / others;
• who else needs to contribute and support decisions and actions;
• what the adult sees as proportionate and acceptable;
• what options there are to address risks;
• when action needs to be taken and by whom;
• what the strengths, resilience and resources of the adult are;
• what needs to be put in place to meet the on-going support needs of the adult; What the contingency arrangements are;
• how will the plan be monitored?

Positive risk management needs to be underpinned by widely shared and updated contingency planning for any anticipated adverse eventualities. This includes warning signs that indicate risks are increasing and the point at which they become unacceptable and therefore trigger a review.

Effective risk management requires exploration with the adult using a person-centred approach, asking the right questions to build up a full picture. Not all risks will be immediately apparent; therefore risk assessments need to be regularly updated as part of the safeguarding process and possibly beyond.

7. Risk Management Plan

Not every adult will require a risk management plan, but they are useful where there are serious concerns. The risk management should:

• identify each risk and detail the measures agreed in response;
• identify who is responsible for each aspect of the required monitoring;
• identify and plan the frequency of reviews;
• identify who is responsible for coordinating reviews;
• identify the role and contribution of each agency in the management of the identified risk/s;
• contain a contingency plan in case of emergency or in response to risks identified.

8. Risk Disputes

Throughout these policies and procedures, risk assessment and risk management is carried out in partnership with the adult, wider support network and others.

Professional views of risk may differ from the views of the adult. Perceived risks have implications for the safety and the independence of the individual, but they also have implications for the accountability of professionals.

Professionals need to embrace and support positive risk taking by finding out why the person wishes to make a particular choice, what this will bring to their life, and how their life may be adversely affected if they are not supported in their choice. The promotion of choice and control, of more creative and positive risk taking, implies greater responsibility on the part of the adult and greater emphasis on keeping them at the centre of decision making.

It may not be possible to reach agreement, but professionals need to evidence that all attempts to reach agreement were taken. Where there are concerns about people making unwise decisions, or there is high risk that requires wider collaboration; a referral to the Complex Risk Management Process should be considered (see Complex Adult Risk Management (CARM) Policy).