DIANA PARGETER – WRITTEN EVIDENCE (ASC0038)
The invisibility of adult social care and its consequences
- Q1 Care is undoubtedly largely invisible. Most caring happens behind closed doors. Much of it is done by family members. Family and friends may not perceive themselves as carers, just thinking they lend a hand, and not publicise what they do. Many never recognise that they do more tasks (both personal and general) than they would if everyone was in good health. This is particularly true of couples who have been together for many years but have not noticed how the dynamic between them is changing and how they have gradually had to adapt to changing circumstances. Also, almost all care from agencies funded by local authorities is only offered to people in their home environment where it is hidden from the general public.
- Q2 It should become the norm for people needing social care to be able to receive it (and not be embarrassed about receiving it) outside their homes as well as inside, both during daily outings and holidays/longer periods away from home. If extra help is needed to achieve this, perhaps from a different local authority, it should be possible to get it. Anyone (carer or cared for) who wants to go out and about should be able to do so somehow, together or apart, whether they are young or old. It might initially be an effort to get someone away from the safety of their home environment, but change generally improves mental health, activity could improve physical well-being and the approach might ultimately reduce the number of care hours someone requires. To help with this, the built environment (including all new dwellings) needs to be accessible to all.
- Q3 They work in parallel. Having care in one’s house several times a day can make one feel completely trapped and invisible. There will be no time to go out between toilet visits, no chance of meeting new people and one wonders who outside knows one exists. Family carers can feel exactly the same if they have no way of getting their charge out and cannot leave them for long or at all. Some older people (cared for and carers) may be relatively content to be at home much of the time, but others and younger people generally like to participate in normal life and meet other people, whether that be through work, volunteering or other activities. They want the option to pursue goals and take part in the way most able-bodied people take for granted. Self-funders, or those helped by family and friends, generally have more flexibility than those with local-authority funding, but there is a limit to what can be expected from volunteers under circumstances when one would normally be independent, or to funds available. People disabled from a young age are most disadvantaged. If they initially have money to self-fund outings, it is unlikely to last long. They will probably have to depend on the goodwill of unpaid carers for many years. The present system of adult social care gives little scope for the service or the people involved to be visible, because mostly the people themselves are both literally and feel hidden away.
- Q4 The purpose of adult social care should be to enable someone to live as normal a life as possible. Most care is “invisible” because it is only offered to people in their homes. Very few people who get it in its present form achieve anything like a normal life. It is not normal for things like eating a meal to only happen at home, but because these occurrences are largely hidden, the general public is unused to accepting an adult being fed as part of everyday life. Social care should allow one to be social, not stuck at home. Requiring help should not be seen as unusual.
- Q5 In theory, adult social care enables an individual to live independently and be safe and well. The age of the individual receiving it should not matter. If a person is to be truly independent however, living the life they want, making their own decisions but maybe needing help to carry them out, they need care that reflects this. The adult social care system needs to become much more flexible. For example, an independent person should have the option to choose to go shopping with their carer, rather than the carer being expected to go shopping for them. With support, many young people would be able to work or volunteer in the same way as their able-bodied friends can. They are the cohort who would most benefit from a system offering care away from home.
- Q6 People of every age aspire to live a fulfilled life. Achieving this can be a major challenge if one needs care. The present care system is so restrictive about how and where one can be helped that a good life is unlikely for anyone who cannot self-fund or has access to unpaid help. The proposed system, with a lifetime cap on how much one should pay, will still be based on assessed basic needs rather than what is needed to live a satisfying life. There should be an expectation that a person can access suitable transport, but the new means-tested system will still not make allowances for savings towards the cost of the heavily adapted vehicle that a severely disabled driver might need to be independent. Not everyone is eligible for support for adaptations under the Motability scheme to enable them to drive themselves, and adaptions can cost as much as another vehicle. To get full flexibility in one’s life might mean full-time care, costing someone aged 20 £50,000 per year at today’s prices and for 70 years, perhaps £3.5m altogether. Extremely few can expect anything like this level of funding, so the challenge is how best to exist without it. Present models determining how much one should contribute to one’s care expect one to need it for about 4 years, not 70! A care funding cap will mitigate the fact that those disabled from a young age will almost certainly pay more than those who need care at the end of their life, but it cannot be right for everyone else in the household to lose out because of contributions towards care. If a young mother needs care, she and her husband may feel that their money would be better spent giving their children a decent life. He might consequently take on a full-time job, child-rearing and caring, perhaps to his own detriment. The challenge for each person requiring help is reconciling their own needs and wishes with how much help it is right to expect from family and friends, and how these carers’ lives (and their families lives) will be affected by help given voluntarily. With many jobs requiring travel, the mother might also need care while her husband is temporarily away on business. There is little scope at the moment for getting temporary paid help, even by self-funding. Most agencies will only take on long-term clients. Another challenge some people face, particularly those without family to assist, is finding themselves under threat of or actually being pushed into residential care against their wishes, simply because it would be cheaper for their local authority than providing the necessary social care at home. In particular, a young, mentally alert disabled person should never be forced into residential care where there are no similar young people.
- Q7 It should not matter where someone is. If they need a carer then the carer should be allowed. This would make people’s need for them much more visible. Public services, and in particular the NHS, should recognise regular carers (both paid and unpaid) as experts, and expect them to be around. Attendance allowance and Personal Independence Payment for care should not be stopped when someone goes into hospital if someone’s normal carers could be of help. Hospitals may not be able to provide the level of social care an individual needs, and individual nurses may not have had necessary training in procedures such as manual bowel evacuation. Social carers could also be used in hospitals to help feed elderly people at meal times and perform other tasks that the NHS barely or does not have enough staff for.
- Q8 Covid put a huge strain on family carers, leaving many at breaking point. Even supposing an outside carer was on offer, families were reluctant to accept help because it could easily be spread by carers who did not have suitable PPE or did not follow the guidelines pertaining to their caring role. This reluctance was considerably worse if someone in the household had been told to shield, as many dependent on social care had. Those completely dependent on outside care became very scared.
Better support for unpaid carers
- Q1 Most carers are not automatically identified because they do not claim Carer’s Allowance, normally because they earn too much, are too young or already claim a pension. Many will not have heard of it at all. All medical professionals should have the responsibility to look for unpaid carers of every age. Elderly couples might look after each other in different ways if one is more mentally alert and the other more physically able. Young carers may not realise that they are taking on extra responsibility for their age. There is a reluctance from certain people (most commonly in a single adult families) to ask for local authority help, because they fear their children will be taken into care. Instead, they depend on their children as carers. The true nature of what any individual young carer does should be established, and appropriate local authority support provided at home. Some carers may be entitled to a period of respite from their caring role. Rather than the system only offering them respite away from their person, there should be funding available for them to go away together, with the option of help with care. A carer might need more respite from being stuck at home than they do from the caring itself, and it should improve the mood of both. Unpaid carers will manage caring for longer if the perpetual strain imposed on them does not become overwhelming.
- Q2 Carers could be enabled to keep working if they had a statutory entitlement to work from home. Alternative carers should be available so that they can attend job interviews, as should support to arrange necessary help longer term. The fact that they get a job should not mean their new income has to be used to fund replacement carers. It should be the person who is getting the care who is means-tested, not the household.
- Q3 Carers aspire to live as conventional a life as possible, whether living with the person they care for or separately. They need periods when they can forget their caring role, including the opportunity to work, take exercise and pursue their own hobbies.
- Q4 Use of support depends on its relevance and location. There seem plenty of well-used groups for those (mostly elderly) caring for people with dementia, but fewer for those involving young adults. Some carers need help to access group meetings because of lack of transport or being unable to leave the person they care for. They should get whatever assistance is appropriate to attend a group at least once a month. In my experience, many younger carers prefer to be out with their able-bodied peers rather than with other carers, but if they are part of a group, they might for example concentrate on promoting social inclusion.
- Q5 Few people other than other carers seem to genuinely understand what it takes to be a carer. The job is neither valued nor respected because most people (including professionals) do not understand that it involves far more than just being present and doing tasks. It could involve many hours of work each day, being constantly on alert, expected to react instantly, both in crises or through the whim of their disabled person, coping with bladder and bowel accidents or the aftermath of falls, violence or inappropriate behaviour or just needing to be pleasant at all times when one feels rubbish oneself. Caring can cause both mental and physical health problems if one gets no chance to care for oneself. Overloading any carer may result in a crisis which the system is ill-equipped to deal with, with the possibility of the carer also needing care themselves.
- Q6 It should be mandatory to include any carer at every meeting involving a client. This might necessitate having the meeting in their home or providing temporary care and/or transport to facilitate a visit elsewhere. The cared-for should automatically be included too unless perhaps they lack mental capacity to make useful comments or take decisions.
- Q7 The care system is difficult to access, especially for carers trapped indoors due to caring. They may not come into contact with any people who could tell them their rights or assist them. Those who do not use the internet may have little access to outside information unless someone else recognises their need. Medical professionals should be more proactive in identifying need. Through-the-door leaflets to all addresses would help, but they must details of local relevant organisations (eg Cambridgeshire’s Caring Together) as well as national ones. It is a very tedious process looking for agencies that will provide care, particularly in rural areas. All agencies should be required to register areas the areas they cover in a single carer-finding website that is searchable by postcode.
Putting co-production at the heart of care
- Q1 It has become more common to involve clients and/or carers as advocates in design and delivery of care, but this should be routine. Client and carer expectations need to be realistic, but their experiences of living and coping with poor health are invaluable. Their input is particularly helpful when assessing fluctuating medical conditions. Unfortunately, what they say is still frequently ignored or not properly taken into account, which can lead to extreme frustration. Caring or being cared for is far from easy. Unsatisfactory outcomes and having to battle for better ones adds to the strain of the situation. Mental health may suffer greatly.
- Q2 Medical professionals should routinely ask what people’s means of coping are, and act as conduits for information about support. Social Navigators, or similar, could have a role here. They would need training in both the statutory rights of carers and what services are available locally, with knowledge of which services are free to access and which would cost the client or carer money. They might need a substantial amount of time to ascertain what exactly would best help people achieve a decent quality of life.
- Q3 Disabled at 20, while a student, I had to rely entirely on friends and family for help because I was not in one place for more than a few weeks at a time. I then lived with my parents. They and my workmates assisted me. After marriage, I had social care via my local authority, who also assisted me in bathing my twins. We discontinued this care because visiting carers could not reliably get me up in time for me to drive the children to nursery/school using my adapted vehicle. My husband became primary carer. Also, care was also no longer free to us. We did not think it right to spend every penny on care rather than use it as a “normal” family would. Means testing was such that we could never have saved enough to buy our next adapted vehicle, and I was not eligible for Motability-funded adaptions. My husband was my sole carer, also juggling work and child care. Fortunately he had a very understanding employer. The children were classed as young carers, but we attempted not to use them as such. My husband remains my only carer, and at present is happy to continue with this arrangement. It gives our lives more flexibility than we would have with visiting carers. We recognise that this will eventually need to change, as he ages and/or his own health deteriorates. Our bungalow is much better adapted for my needs than any residential or nursing home I have ever visited, giving me as much independence as possible. I therefore hope that I will never be pressurised into going into residential care against my wish.
- Q4 True co-produced care involves client, family, friends and carers talking with professionals right from the start and all through the process. Desired outcomes should be discussed, noting the aspirations of every person involved as well as considering their situations right now. Any forthcoming care package should reflect these. The client might be helped to work, or hours provided so that family carers can work, and the financial impact of each option should be taken into account. Everyone’s mental health going forward should be considered as important as the way a client is looked after physically. As far as possible, social care should enable someone to live their life in a similar way to that of a person without health issues.
- Q5 Care and support design should involve listening throughout to everybody affected, laying out and discussing all possible options with them.
- Q6 Disabled people and carers should always have representation on clinical commissioning groups and suchlike bodies. Parliamentary groups should listen to charities and individuals’ experience of using services and where they fall down. Those who will need care for many years need to be involved as well as older people, and meetings should be held in places that are easy to access (with guaranteed parking, flat access to the meeting room and accessible toilets).
26 May 2022
 A full-time wheelchair user for 43 years, as an individual believing social care should be empowering not restrictive.