LYN DEAKIN AND DAVE DEAKIN – WRITTEN EVIDENCE (ASC0036)
I’d firstly like to say that I’m grateful for this positive initiative, as proper recognition of the work done by carers at home is long overdue.
Before looking into the specifics of how to lift the cloak of invisibility for Adult social care, there are three basic concerns that need to be addressed. These are Definition, Funding and Integration.
What exactly is Adult Social Care? At present, I would suggest that the perception of Adult social care is that it deals with people with mental disabilities (Adults with Learning Difficulties) and old people in homes, and when it is mentioned many people will switch off if their perception is that it is limited in who it affects.
Adult social care really means looking after everyone from 16 to 100 ( and beyond !) , and helping every adult access whatever help they need either from the NHS , Educational services , Local Councils and all manner of Voluntary and charitable institutions. In fact why is adult social care separated from that provided for children? Many social needs start from birth so why create a barrier to continuous care part way through life?
It is vital to convey that it in fact relates to anyone who needs help because they have a restricting condition of any kind, mental or physical, which is a barrier to them leading a healthy and satisfying life.
Maybe “re-branding” may be a way to raise the profile of Adult social care, whilst at the same time redefining the service (There are many precedents for name changes being used to re-introduce a product or service whose name has become synonymous, perhaps unfairly, with failure!)
A genuine desire for a drive to increase the visibility of the work done by unpaid carers and care workers requires funding. Sometimes circumstances highlight this work e.g. The Covid -19 pandemic which brought to the fore the difficult work done in Care homes by professional care workers ( but not home carers ) , but this is an exception , and generally publicity and education will both require funding .
In all areas of Government and Council services the funding is clearly no longer available to provide the level of service needed, despite the best efforts of those employed within the sector. Adult social care services, although supposedly benefitting from ring-fenced increases in council tax and one off government grants, are no exception and have been significantly reduced in recent years. There is little point lifting the veil on what work is being done if there will be no funding in place to actually improve the situation.
Looking after carers and their loved ones better all comes down to the ability to fund. You can’t support all these people and plan for their futures without adequate provision, and with all the current calls on the government money this inquiry needs to show that funds are urgently needed.
At the heart of many problems encountered by people seeking to access services is the lack of co-operation between government departments, local councils and services. Information is held in diverse places and the big picture is not clear.
Invisibility of the social care problem is compounded by the fact that often those suffering are working in isolation, have little spare time, and are unable to access all the help needed. If they do not make themselves known, or make a fuss, then the extent of caring which is taking place is similarly not clear.
I have looked at all the questions set out under the headings in the Call for Evidence document, and these are my thoughts, though not necessarily in exactly the same order as the questions appear.
Invisibility of Adult Social Care and Consequences
I agree that Adult Social Care is invisible. Unless you personally or an immediate family member is affected, then there is little empathy or understanding for anyone who has to carry out caring duties. Although there are many people who do devote themselves to voluntary work and helping those less fortunate, and it is fair to say that some ethnic groups within our society to their credit do value and respect the elderly in particular and the care of them, it is sadly a fact that too many people in society are self-centered and materialistic and ignore problems they wrongly perceive as nothing to do with them. Education is the key.
Critically, people need to be educated about the time and effort that goes into caring, because no one knows how they/members of their families may be affected by disabilities in the future – anyone could be affected at any age and time.
I have a daughter who is an Adult with Learning Disabilities. I have been the one to deal with all the relevant agencies since she was born and because of my own education and experience in administration, this has worked as well as could be expected, though at every stage to some extent there have been reels of red tape to negotiate, and authorities to battle with. What was most noticeable was the lack of co-operation between various government and council services and departments. This is a situation mainly caused by lack of ability to jointly fund or provide cross service funding.
When my mother started with Alzheimer’s in more recent times , the support available had deteriorated , and I wasn’t even kept informed as to what was happening even though it was stated on her medical records that I should be. I even had to fight for my mother to get a proper diagnosis.
At one point in time the Dementia team had closed down her case because she didn’t answer the door or phone and they didn’t want to invade her privacy. Clearly a lack of understanding on how the disease affects people and also a lack of application of common sense in the cause of data privacy and human rights!
The main aim of any service looking after people is to give them the opportunity and means to have a better quality of life. Each individual case is different. For example, autistic spectrum people do not often like mixing in situations with lots of people and noise, but in small numbers cope much better. Unfortunately “generic” solutions rarely work well.
Your point 6 is extremely important in that it highlights the growing problem of people living longer, and particularly the number of people who with age become ill and need care, and have no remaining or willing family to help them. The global jobs market and splitting of families we have these days is also a factor , as is the increasing use of IT Services which many elderly people are not comfortable with
(This should change in future).
NHS services can help greatly by early diagnosis of problems. This allows the scale of the problem to be identified, and with bigger problems comes less “invisibility” especially at national level.
Covid-19 has had an impact in that it has increased isolation, left even less people working in the care sector, and changed working practices in many areas for the foreseeable future (though some carers could benefit from this – see later comments)
Let’s not also forget the effects of Brexit especially on staff numbers as many good overseas workers left the care area. A lot of services were in fact already eroded away before COVID 19. Personally I think it will now be just used as an excuse not to replace those services in the future.
Better Support for unpaid carers
Adult Social Care should be about providing the most appropriate care for the most vulnerable in society. If that appropriate care is deemed either in full or partly to be a parent or relative ( with their consent ) they should be afforded the same access to funds and help as would be provided if they were looked after by a service provider.
I am a single parent with a daughter who has Learning Disabilities. She is my only child. I have had to fight for my mother to obtain a diagnosis. If I get Alzheimer’s like my mother who will fight for me? The system could so easily have let my mother down if I hadn’t fought for her.
Who will fight for my daughter should anything happen to me? This is something I, and all other carers worry about a lot. Safety and security for our loved ones if we were not here to help means so much – if our minds could be put at rest that would be an enormous load lifted, but sadly this is something which is rarely possible.
Obviously, instead of cutting back on Social Care more funding needs to be put into the system. The creation of safe environments/placements such as communal living with facilities to improve the quality of people’s health and mental wellbeing are required for the future.
The Carers Allowance is £69 per week which is totally unacceptable and unfair. Who can live on that amount? What does that say about the value of carers? The allowance should also be tiered. There are people who visit relatives for a short time who are entitled to the same allowance. What about the carers who live with the people they care for and look after them 24/7?
I had to leave my employment in order to care for members of my family due to inadequate provision available outside of the home. A lot of carers look after their loved ones 24/7 so haven’t the time or energy to pursue employment. Increased opportunities to work from home could help younger carers, but they need help to achieve this and must take care to avoid becoming even more isolated as a result.
Carers should not have to worry about their finances.
The biggest help to many would be an improved carers allowance as previously stated. In addition, when a carer reaches retirement age why should they then lose the Carers Allowance if their main/only source of income is the national insurance retirement pension? They still have a caring role to fulfil.
One measure that would help greatly would be removing the need for repeated filling in of forms for various govt. agencies who actually already have access to the information requested. This is particularly appropriate where there is clearly going be no change in the condition of the cared for person. Carers (who have least capacity to do so) appear to fill in more forms than anyone else in society.
With regard to the voluntary community. From my experience a lot of these services are run by carers themselves. I am the Chair of a local group run for Adults with Learning Disabilities. The Club was established by carers as there was no provision for Adults with learning Disabilities in the local community.
Carers are not valued. It is clearly taken for granted that they will provide the care for their own family , but if things don’t change or become harder , many of those carers may become ill themselves and the government will be left to care for even more of the disabled/elderly in the future which they can ill afford to do.
Carers need to be recognised as essential contributors to society. Social care professionals need to be aware of how much knowledge carers accrue in their caring roles and how much this can benefit them and others.
The social care system generally needs to be simplified. Designated people should be employed to give appropriate advice rather than carers having to search for information themselves which can be time consuming.
Putting co-production at the heart of care
The NHS and social services need to work together. They seemed to be at loggerheads most of the time when I was having to deal with my mother. Often the support which is publicized as available is in practice hard to access or unsuitable.
The voices of Carers are rarely heard, save for opportunities like this. To be fair the local council do carry out consultations from time to time in relation to services they are offering, but the perception is that it is just a necessary part of due process and there is no feedback into whether suggestions are taken into account.
A big problem is that carers often don’t have the time to do that essential feedback. Reports like this require much thought and work often when tired after a long day and can’t be done without help from family of friends!
The transition from child to adult services is a complete misnomer. There is no transition as such - One day you are caring for a child and the next an adult! This was highlighted by my daughter being offered a bed in an adult hospital ward at the age of 17, which given her problems was totally inappropriate. She left special school at 16 but she wasn’t ready to leave school at that age. I believe the leaving age for all special schools should be 18/19 years of age. She was actually lucky in being able to access college provided services, which were very good, but sadly no longer available to the extent they once were.
I hope that this feedback from my own experiences over many years will be useful to the committee’s inquiry.
26 May 2022
 Full time care in Newport, Shropshire