RELEVANT INFORMATION

Joseph Rowntree Charitable Trust

The Trussell Trust

Cost of Living Crisis – Easy Read Guide (Mencap)

SOURCES OF ADVICE AND ASSISTANCE IN SOUTH TYNESIDE

South Tyneside Foodbank

June 2022: This new chapter outlines some of the main issues around living in poverty, including how it affects people with care and support needs and how it can impact on safeguarding adults. It also contains information about practical ways to support people living in poverty.

1. Introduction

There are a many different factors that contribute to a person living in poverty. Broadly these can be described as a) personal – their individual situation of employment, opportunities, life circumstances etc and b) universal – that is 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 whose aim is to solve poverty. It defines poverty simply as being when someone’s resources are well below their minimum needs.

However, it goes on to say that there is not just one definition of poverty and that it is a complicated problem that needs a range of measures to tell us about the different features of poverty.

JRF gives a number of different measures of poverty (see What is Poverty?), but a government publication just gives two:

  • relative low income: a person is in relative low income (or relative poverty) if they are living in a household with income below 60% of the average household income in that year;
  • absolute low income: a person is in absolute low income (or absolute poverty) if they are living in households with income below 60% of the 2010/11 median (taking inflation into account). This is a baseline measure which looks at how living standards of low income households change over time (Poverty in the UK: Statistics, House of Commons Library).

Income can be measured before or after housing costs are taken out of the calculation, and poverty is calculated based on these different definitions of income.

2.1 Levels of poverty

JRF defines different levels of poverty:

  • a person or household has a minimum amount of income (the income standard) or better: this means they are able to afford a decent standard of living;
  • a person or household has income that is below the accepted minimum income standard: they can just about get by on a daily basis, but it is difficult for them to manage unexpected costs and events;
  • a person or household does not have enough income: and they are falling well short of a decent standard of living and it is quite likely they will not be able to pay their needs;
  • a person or household is destitute: that means they cannot afford to eat, keep clean and stay warm and dry.

See What is Poverty? (JRF)

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 being 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;
  • 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.

There are a number of worldwide factors that have pushed up prices, further impacting on the number of people in poverty and worsening levels of poverty. These include:

  • inflation in the UK is now higher than it has been for many years and this is impacting on the cost of goods, rents and mortgages;
  • there is a shortage of workers which has meant companies have had to increase their wages to attract staff, which in turn means prices have to rise;
  • the cost of shipping and importing and exporting goods have risen partly due to the UK leaving the European Union (Brexit);
  • the war in Ukraine – this is impacting on food prices, because Ukraine is usually a very big exporter of sunflower oil and wheat;
  • the worldwide cost of oil production is resulting in record heating, lighting and fuel costs.

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 treatments 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 having to:
    • pay for care and support services, such as home carers;
    • regularly buy equipment or supplies;
    • needing 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;
    • relying on local food shops which may be more expensive / have less choice;
    • buy food for specialist diets;
    • they may not be able to walk or use public transport due to health issues and therefore need their own car or pay for taxis.

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.

The types of abuse and neglect that may be committed by those who are suffering as a result of poverty and who are involved with someone with care and support needs, include:

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 their organisation’s safeguarding procedures and the local 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 significant knowledge about appropriate interventions for people living in poverty, there are specialist agencies that can also 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. 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 someone living in poverty is not asked to pay for services;
  • equipment, supplies and adaptations: where someone requires equipment, supplies or adaptations to them 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 assisted 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 Department for Work and Pensions should be contacted to see if the person is eligible for any financial support for their move and refurbishment of the new accommodation;
  • utility bills: if the person is struggling to pay their gas, electricity and water bills, staff should support them to contact the relevant service provider to come to an arrangement about overdue bills or in advance of bills being sent. This also applies to internet providers, which may be essential for people with care and support needs living at home;
  • 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;
  • transport: a person with care and support needs who is living in poverty may not be able to afford bus or taxi fares, and particularly unable 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.

7.2 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 who specialise in issues of poverty, including food banks, who can work with people with care and support needs. 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. Local community or service directories will contain the contact details for such key organisations.

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:

Was this helpful?
Yes
No
Thanks for your feedback!

RELEVANT CHAPTERS

Working with People Living with Frailty

Working with People Living with Dementia

RELEVANT INFORMATION

Avoiding a Fall (Age UK)

Falls Prevention (NHS)

This guidance was added to the APPP in March 2022.

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).
Was this helpful?
Yes
No
Thanks for your feedback!

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 Promoting Wellbeing and Preventing, Delaying or Reducing Needs chapters). 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.

Was this helpful?
Yes
No
Thanks for your feedback!

 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.

‘Autism spectrum disorder’ (ASD) or, more simply, autism is the commonly used term.

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 light, sound ,taste 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, Other Conditions), which will mean they need different levels of support.

4. Other 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 someone 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.

  • 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.
  • 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.
  • 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. The Health and Care Act 2022 introduced 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:

Social media pages dedicated to issues affecting autistic people include

Facebook:

Twitter:

Forums and communities:

7.2 Local support

Support services in a person’s local area should include:

  • local support groups (this information should be available from the local autism assessment service);
  • the local authority who may carry out a needs assessment with the person;
  • the local authority’s information and advice service;
  • at college or work – speak to student support services or the human resources department about reasonable adjustments which can be made;
  • search for local groups using:
Was this helpful?
Yes
No
Thanks for your feedback!

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).

In an organisation that thinks family:

  • There should be senior leadership commitment to a whole-family approach with protocols in place so that services can be coordinated.
  • Staff training ensures the skills and referral arrangements are in place so that service protocols are operating ‘on the ground’.
  • Family-related questions are embedded in processes at first contact and subsequently, such as:
    • Who else lives in your house?
    • Who helps with your support and who else is important in your life?
    • Is there anyone that you provide support or care for?
    • Is there a child in the family (including stepchildren, children of partners or extended family)
    • Does any parent need support in their parenting role?
  • There is an active approach to establishing if there are any significant potential changes in families’ lives and working with them to plan for these.
  • Families and carers are an integral part of the design, delivery and evaluation of services and support. (Adapted from the LGA guidance, p. 3)

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.

In an organisation that gets the whole picture:

  • Information on the assessments and care plans that family members are receiving from other organisations is routinely identified and shared between partner agencies as appropriate. Where possible and appropriate, assessments are coordinated or combined.
  • Proportionate assessments are undertaken in a way that is most appropriate to each family.
  • People providing care and support are identified and involved in assessments to provide their expertise and knowledge and views of what works and what does not.
  • Risks to carers of sustaining their caring role are always considered.
  • Carers’ willingness to continue caring is always established.
  • Where they wish to have one, carers are provided with an assessment carried out by their local council. In such circumstances, the council will consider the carers’ eligibility for support in their own right.
  • In all instances, even when a person can achieve an outcome independently, consideration is given to any impact on others and whether they might be adversely impacting on the health or safety of others, particularly family members and children.
  • At assessment, all of a person’s needs are identified regardless of whether they are being met by any carer.
  • Consideration of the ability to maintain family or other significant relationships, including with any children, and the impact on the adult’s wellbeing of these not being maintained is always considered. This applies to both the person in need of care and support and their carer.
  • When a child may be a young carer, consideration is always given as to whether to undertake a young carer’s needs assessment under section 17 of the Children Act 1989.
  • Assessments of an adult identify any potential child in need who does not have any caring responsibilities. (Adapted from the LGA guidance p. 4)

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.

In an organisation that makes plans that work for everyone:

  • Planning takes into account the wellbeing of all the family and the impact of any services and support on other family members. This includes identifying and responding to situations such as mutual caring, and carers living at a distance or outside of the local area.
  • Planning always involves carers, and consideration is given to the involvement of other family members.
  • Planning considers how carers can be supported to look after their own health and have a life alongside caring.
  • Plans include consideration of support to ensure a carer is able to fulfil any parenting role.
  • Consideration is given to how a person’s circle of support can be developed, where this might benefit them.
  • Plans from different organisations for any family members are identified and consideration given as to whether these can be aligned, coordinated or integrated into a single plan (where all involved agree).
  • Where plans are integrated, a lead organisation is identified to undertake monitoring and assurance. It must be clear when the plan will be reviewed and by whom. (Adapted from the LGA guidance p. 5)

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.

In an organisation that knows its approach is working for the whole family:

  • The impact of the plan and results being achieved are reviewed in relation to both the individual and the whole family. This includes consideration of any unintended consequences for other members of the family.
  • Consideration is given to any changes that can be made to maximise the benefit to the whole family.
  • Carers’ (including young carers’) needs are routinely reviewed and the support they are willing and able to provide, as well as the outcomes they want to achieve, is re-established.
  • Any anticipated changes in the family that may impact on needs and support are identified and considered in any revised plan.
  • The plan is checked to see that it is providing adequate support to ensure children are not expected to offer inappropriate or excessive levels of care. (Adapted from the LGA guidance p. 6)

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.

Was this helpful?
Yes
No
Thanks for your feedback!

This information is relevant to all those working with adults with care and support needs. It outlines different types of hidden disabilities and how staff should be aware of and respond to such issues.

SOUTH TYNESIDE SPECIFIC INFORMATION

Safeguarding: Keeping you Safe from Abuse and Neglect (Easy Read Leaflet)

RELEVANT CHAPTERS

Equality, Diversity and Human Rights in a Safeguarding Context

Mental Capacity

RELEVANT INFORMATION

Councils need to check how they help People with Hidden Disabilities (Local Government and Social Care Ombudsman)

September 2022: Section 2.2, Developmental / neurodevelopmental disabilities and Section 7, Training and Awareness have been revised. Section 6, Hidden Disabilities Sunflower Lanyard is new.

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.

Was this helpful?
Yes
No
Thanks for your feedback!

RELEVANT CHAPTERS

Managing Risk

RELEVANT INFORMATION

Work Related Violence (Health and Safety Executive) 

This chapter was added to the APPP in January 2020.

1. Introduction

Harassment and violence towards staff can have a direct effect on their health and safety. It can also affect standards of work, performance, confidence, morale of all staff.

Staff in roles most at risk are those who:

  • give a service;
  • are carers;
  • in education;
  • involved in cash transactions;
  • make deliveries / collections;
  • exhibit controlling behaviour towards others;
  • represent authority.

Those committing acts of harassment and / or violence to staff maybe adults with care and support needs, their family or friends or other members of the public. A person who commits such acts may be subject to a police investigation and criminal prosecution or other organisational sanctions, such as loss of service.

Managers and staff have a responsibility to abide by the policies and procedures of the service to:

  • limit incidents of harassment and violence;
  • respond to them appropriately;
  • protect themselves and their colleagues;
  • reporting the incident to the police with a view to prosecution where appropriate.

2. What is Violence and Harassment?

2.1 Violence

Violence to staff is defined abuse, threats or assaults in circumstances relating to their work. This includes:

  • verbal abuse;
  • offensive language;
  • discriminatory or derogatory remarks, for example those which are racist, sexist or homophobic in nature;
  • obscene gestures;
  • threatening behaviour;
  • stalking;
  • physical attacks;
  • spitting; and
  • throwing objects.

2.2 Harassment

Harassment is when a person causes alarm or distress to a member of staff; this can result in the victim being put in fear of violence. It can include repeated attempts to communicate with the member of staff, which are clearly unwanted and contact them in a way that the perpetrator expects to cause them distress or fear.

3. Assessing Risk from Violence and Aggression

The main factors that can create risk are:

  • mental health disorders;
  • impatience;
  • frustration;
  • anxiety;
  • resentment;
  • drink and / or drugs;
  • inherent aggression.

3.1 Violence risk assessments: staff responsibilities

Every adult who has a history of aggression / violence must have a care and support plan risk assessment. This should identify the risks and states the actions to be taken to minimise these risks. This should include family or friends who have such a known history, even if the adult themselves does not present a risk.

Information should be shared with other concerned organisations.

Systems in place to flag high risk cases should be activated.

Risk assessments should be regularly reviewed, care plans updated and actions taken to minimise risks.

Senior managers should be informed of risks and decisions documented and signed on case files.

3.2 Violence risk assessments: managers responsibilities

When carrying out a potential violence risk assessment, the following factors should be considered.

In the workplace:

  • work activities;
  • working conditions;
  • design of the work activities and surrounding environment;
  • frequency of situations that present a risk of workplace violence;
  • severity of the potential consequences to the member of staff who may be exposed to a risk;
  • information on workplace violence based on historical evidence and accurate information;
  • measures already in place to prevent workplace violence.

The wider working environment:

  • description of the department or area the manager or supervisor is in charge of;
  • history of violence in the department / service area;
  • activities in the department / service area that could expose workers to violence;
  • circumstances that might increase the risk of violence in the department / service area;
  • measures in place to address violence and the resources needed to implement them.

3.3 Recording

See Case Recording chapter

It is crucial for the safety and wellbeing of staff, adults and the protection of the organisation and wider community that risk assessments are fully documented. This includes clearly documented management oversight and decision making.

4. Management Responsibilities

Managers must assess the risk of both physical and non-physical assault to staff and take appropriate action to deal with it.

These steps may include:

  • providing suitable training and information;
  • improving the design of the working environment (such as physical security measures);
  • making changes to aspects of staff roles;
  • following the escalation policy of the organisation including reporting high risk cases of potential risk of violence and all incidents of actual physical and non-physical assault so that preventative action can be taken to ensure it is not repeated.

This will also help managers to check for patterns and so help predict the types of incidents that could occur.

Findings from all risk assessments should be communicated to all staff as appropriate, and arrangements need to be put in place to monitor and review such assessments.

Mechanisms should be in place to share learning with staff and across the service.

4.1 Staff support

Depending on the seriousness of the incident, staff who have been the victim of harassment and / or violence should receive robust support from managers and the organisation’s human resources department as appropriate.

This may include:

  • debriefing by the line manager, as soon as possible following the incident;
  • supervision with the line manager for a more indepth examination of the incident and any learning points that arise or further discussion with other colleagues including senior managers;
  • team discussion regarding the incident where appropriate to share learning and any change in practice required;
  • referral for counselling for the member of staff, where required;
  • support for the member of staff and the line manager, as required, in the case of any ongoing police investigation and subsequent prosecution or other internal organisational sanctions taken against the person perpetrating the harassment or violence.

Managers should also ensure that where the perpetrator is an adult who still uses the service, that steps are taken to discuss the situation with them, their behaviour, how they could have responded differently and referral to other agencies for support / interventions regarding behaviour management as appropriate.

Was this helpful?
Yes
No
Thanks for your feedback!

1. Introduction

As people get older, they sometimes find that loss of memory becomes problematic. It is normal for memory to be affected by age, stress, tiredness, menopause or certain illnesses and medications, but there may also be underlying medical reasons that may require investigation and treatment, including dementia.

The following statistics relate to dementia in the UK:

  • there are currently an estimated 944,000 people with dementia;
  • the number of people with dementia is predicted to rise to 1.1m by 2030, 1.4m by 2040 and will reach 1.6m by 2050;
  • one in 14 people in the UK aged over 65 have dementia;
  • the financial cost is £34.7 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 includes 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 they develop 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 can be different for each person. There are no treatments yet that can slow the progression or delay the onset of the diseases which cause dementia, but a number of treatments which are currently available on the NHS can help to temporarily reduce symptoms.

An adult who is experiencing a number of the symptoms related to dementia may find it difficult to keep being independent and may often 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, in the first instance 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;
  • having 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 very 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, followed by 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 has starting noticing 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 at first, 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 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 gets worse, their ability to protect themselves  lessens and often disappears completely.

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

9. 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.

Was this helpful?
Yes
No
Thanks for your feedback!

This chapter provides outline information for multi-agency practitioners to consider when they are working with adults with care and support needs or their carers who have communication needs.

RELEVANT CHAPTERS

Information and Advice

Independent Advocacy

Independent Mental Capacity Advocates and Independent Mental Health Advocates

This chapter was added to the APPP in July 2018.

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). 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.

Was this helpful?
Yes
No
Thanks for your feedback!

This chapter provides guidance for practitioners about the importance of case recording in adult safeguarding, including the principles for good recording and other issues for consideration.

RELEVANT CHAPTER

Supervision

South Tyneside Multi Agency Information Sharing Agreement

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)

The South Tyneside Safeguarding Safeguarding Adults Board will regularly review the quality of recording as part of its performance and quality data scrutiny.

1.1 Access to records

Practitioners should bear in mind 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

Case records should be recorded in accordance with the following:

  • completeness: all information relevant to the adult and their circumstances should be documented. All action plans, decisions and key conversations and phone calls should be recorded;
  • openness: as adults may 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: files 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. Records should, therefore, be focused. 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;
  • evidence based: so all decisions are supported by facts;
  • partnership working: records should show evidence of partnership working between staff, other professionals, other agencies, adults and their carers;
  • communication needs: should be clearly addressed within the record;
  • risk management and contingency planning: files should incorporate assessment, including risk assessment and contingency plans where appropriate;
  • equalities issues: record the adult’s race  /ethnicity, gender, religion, language, disability;
  • security: all files must be kept securely and shared in accordance with data protection principles.

5. Adult Safeguarding

Safeguarding cases are some of the most high risk situations for adults and their carers. Good case recording is therefore essential to ensuring the safety and wellbeing of adults and their carers in situations where abuse or neglect are of concern.

In the case of providers registered with the Care Quality Commission (CQC), records of these should be available to service commissioners and the CQC so they can take the necessary action.

All agencies should keep clear and accurate records and follow their own agency’s recording policies.

In general, where there are safeguarding concerns regarding an adult,  there should be an audit trail of:

  • 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;
  • it is essential to demonstrate how an assessment of risk, responsibility, rights, autonomy and protection of the adult was undertaken;
  • 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.
Was this helpful?
Yes
No
Thanks for your feedback!

RELEVANT CHAPTER

Mental Capacity

RELEVANT INFORMATION

Court of Protection

Office of the Public Guardian

Advance Decision to Refuse Treatment (Living Will (NHS)

Universal Principles for Advance Care Planning

November 2023: A new section 1, Advance Care Planning, has been added to reflect guidance contained in ‘Universal principles for advance care planning’ which was published in response to the Care Quality Commission report ‘Protect, Connect, Respect – decisions about living and dying well’

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:

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:

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

Refusing Cardiopulmonary Resuscitation (CPR) in advance (NHS) 

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).

Was this helpful?
Yes
No
Thanks for your feedback!

 

1. Introduction

Risk taking is part of daily life and does bring benefits, including wellbeing (see Promoting Wellbeing). The evaluation and management of risk, therefore, is an essential part of the assessment process and is a necessary for identifying an adult’s level of need and eligibility for services. 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 in each case risk 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 evidence based information, evaluating that information – balancing possible positives of a course of action against potential drawbacks – and using professional judgment to ascertain the potential for the occurrence of harm.

Within organisations, lines of accountability with other agencies should be established for high risk areas, and a clear management reporting structure should be in place.

Staff undertaking risk assessments should be competent and able to evaluate and act upon a risk of danger, harm or abuse. Staff should therefore know how to reduce or remove risk. Ongoing risk management tasks include staff supervision.

In high risk situations staff should be debriefed on the outcomes of the assessment, enabling them to gain insight into their work, their personal stress, their decisions and the appropriate plan of action.

2. Types of Risk

Professionals undertaking the risk assessment should be aware of the different types of risk that may exist. These may include risks in four main areas:

  1. physical health;
  2. mental health;
  3. emotional wellbeing;
  4. social circumstances.

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

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

Types of risk may include the following:

  • the physical environment, for example an unsafe home conditions;
  • mental health issues which result in, for example confusion, wandering, leaving the gas on;
  • the adult’s behaviour, for example fire setting or aggression;
  • major life changes, such as bereavement / loss, moving to residential care;
  • health issues refusing medication;
  • a poorly managed service;
  • sharing accommodation or services with people who have violent behaviour;
  • relationships including emotional, physical, financial or sexual abuse or neglect.

3. 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 its impact and whether or not they find the mitigation acceptable. Working with the adult to lead and manage the level of risk that they identify as acceptable 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 (see Information Sharing, as above);
  • key elements of the person’s quality of life and wellbeing can be safeguarded.

4. Identifying Risk

Not every situation or activity will entail a risk that needs to be assessed or managed. The risk may be minimal and no greater for the adult, than it would be for any other person.

  • Risks can be real or potential;
  • Risks can be positive or negative;
  • Risks should take into account all aspects of an individual’s wellbeing and personal circumstances.

Sources of risk might fall into one of the four categories below:

  1. private and family life: the source of risk might be someone like an intimate partner or a family member;
  2. community based risks: this includes issues like ‘mate crime’, anti-social behaviour, and gang-related issues;
  3. risks associated with service provision: this might be concerns about poor care which could be neglect or organisational abuse, or where a person in a position of trust because of the job they do financially or sexually exploits someone;
  4. self-neglect: where the source of risk is the person themselves.

5. Risk Assessment

Risk assessment involves collecting and sharing information through observation, communication and investigation. It is an ongoing process that involves persistence and skill to assemble and manage relevant information in ways that are meaningful to all concerned. Risk assessment that includes the assessment of risks of abuse, neglect and exploitation of people should be integral in all assessment and planning processes, including assessments for self-directed support and the setting up of personal budget arrangements.

Adequate risk assessment can rarely be done by one person alone and a coordinated approach is required. Good relationships between professionals and the adult and their carers makes the assessment easier and more accurate, and may indeed reduce risk.

A risk assessment needs to identify and balance different perceptions of risk, including the adult, their carers and professionals; the adult’s right to make informed choices about taking risks should be safeguarded and encouraged. Decisions about risk, however, do need to balance any risk to the public and the needs and wishes of the adult.

If the adult lacks 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).

The professional undertaking the assessment must be supported throughout the process by their manager, to ensure all aspects of the situation have been understood, evaluated and the views of the adult, their Attorney and / or Advocate where appointed and other agencies and service providers have been considered. The professional undertaking the assessment should ensure a referral for an IMCA is made, where appropriate, to protect an unsupported person who lacks capacity to make a decision.

See Supervision.

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.

It is important that organisations ensure that appropriate tools are available to support staff to evidence professional judgement during their decision making. Issues around information sharing may be relevant in this context (see South Tyneside Multi Agency Information Sharing Agreement).

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.

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 intervention 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. Decision Making and Risk Management Plan

The professional should conclude how serious the risk is, how specific it is and its immediacy.

Not every adult will require a risk management plan, but where there are concerns, a plan should be developed. The risk management plan should:

  • identify each risk and detail the measures taken or services applied to remove or reduce it;
  • 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. Reviewing Risk

Individual need will determine how frequently risk assessments are reviewed and wherever possible there should be multi-agency input. These should always be in consultation with the adult.

9. 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. The decision to involve others or not is in itself a decision which may give rise to risk, and the individual may need support to make this decision.

The 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. This highlights the importance of training and/or regular practice in making independent decisions by adults. Accessible knowledge through information and advice, assertiveness through the right kind of advocacy and support may be appropriate.

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 Multi-Agency Risk Panel is one model used to support safeguarding adults processes.

Was this helpful?
Yes
No
Thanks for your feedback!