MRS SANDRA JOYCE[1] – WRITTEN EVIDENCE (ASC0007)

The invisibility of adult social care

Question 1

1. Adult social care is invisible. I have always called it the “hidden sector”. The problem is that many people only encounter social care when they have a sudden need for it and then they expect “something” to be there. This is because they do not understand/differentiate between a health need and a social care need and are shocked to discover that their needs are not going to be met by the NHS. There is a distinct lack of education and thus awareness within the general public about the two systems which operate, and are funded, in very different ways. Unpaid carers are often not even considered to be apart of the sector and yet without them the sector would collapse
2. One of the fundamental problems about social care is that it is based on kindness and this does not seem to be valued by society in general. People working within social care, paid or unpaid, have to display kindness, empathy and a willingness to put others first. What society forgets is that if you do this currently, you are rewarded several times over in intangible ways but not certainly not in pecuniary ones
3. People dip in and out of the NHS all their lives for many reasons – birth, vaccinations, screening, monitoring, emergencies, medical treatment, surgical procedures, GP services, maternity, mental health, dental etc so there is an unconscious belief that it will meet all needs. Of course, it does not. 
4. NHS staff do not need to advertise what they do as they work within a beloved national “institution”, social care staff do need to advertise what they do but are not afforded the same platform from which to do it. Instead, the comments of “you only wipe bottoms” made to staff by their own friends and acquaintances remain a common theme. I cannot remember how many times families have said to me “I never knew places like this existed” or “I never understood what you did” or “I never understood how divorced you really are from the NHS”.
5. The model which has evolved and encouraged by central government is, mainly, of an independent sector. This places us at an immediate disadvantage when it comes to having our voice heard and addressing the lack of understanding of what we do. Until the pandemic, the understanding of the general public of what we do as a sector was pitiful.  The pandemic though, has given some of us a voice and those of us willing to work with the local and national media to raise awareness have finally been given a voice. However, while there is an increased awareness of our existence it seems few in the Government have truly understood the sector as the White Paper demonstrates.
6. As a result of the social care model, we are businesses and, in order to continue providing services, have to make a profit. This is seen as abhorrent by both the government and the general public who do not understand that we are merely meeting a need within the framework established by government or that the profit is often so small that we cannot re-invest sufficient monies needed in services to ensure our survival. Many small to medium care providers are on the verge of collapsing while the business models of the equity backed large providers can project a damaging image of the whole sector.  Of course, the fact that the NHS is a business of sorts, funded solely by their taxes, may be overlooked/accepted by the general public. It seems that the NHS is too big to fail and all efforts are made to shore it up and bail it out. However, it seems likely that as more and more independent care providers go out of business this will remain unnoticed until the numbers lost are so enormous that the NHS too will fail as the flow of patients through the hospitals will cease. Unfortunately, we may soon be a nation without a functioning social care system and then we really will be invisible
7. As a care provider I have to fight for fees which reflect the “TRUE” cost of care. As with all areas within England, we are currently going through a process with our local authority to establish the “FAIR” cost of care. These are two very different definitions and unless the “TRUE” cost of care is recognised and paid very soon the Social Care sector will become completely invisible because there will be insufficient services left to meet the needs of the population. The NHS has budgets but can, and it seems do, breach them all the time out of necessity. Yes, they have to answer to their paymasters but at the end of the day the NHS must go on. Social Care is run on a completely different model. There is no central body for social care similar to the NHS. The sector is comprised of small, medium and large providers who run all the regulated and some unregulated  services with an army of unpaid carers doing everything else. In most counties, even local authorities have pulled out of the market, conscious that independent providers are much more efficient and successful at running such businesses. However, we can only continue to do so if we are paid the TRUE cost of care

Question 2

1. Much is being done to promote integration and joint working between social care and parts of the NHS and this will go along way to educate those working within specific parts of the NHS. However, more is needed to ensure that clinical staff within the hospitals gain an insight into what we do. My suggestion that all new entrants to clinical settings with our local foundation trust spend some time within the social care sector – be it within a nursing home or care home or day service or other setting – is gaining traction. This exposure to the reality of life within social care would have a profound impact on our inter service relations and enable staff to educate others. It would not need to be a long placement - a day in a care home or even a chat with an unpaid carer
2. We need Secretaries of State and other Ministers occasionally to reverse the term “NHS and Social Care” to “Social Care and the NHS”. This is a subtle but powerful way of getting the message out there that social care is equally as important as social care. Matt Hancock’s resignation letter praised the NHS but made no mention at all about social care! Think what message that sent out!
3. Social care needs more of a voice on the national stage. There are several excellent representative bodies for social care who liaise with the Government but sadly so little changes and we feel that our opinions fall on deaf ears. For example, until the recent bed blocking within the NHS hospitals our value as a critical partner in keeping the flow through hospitals was not even acknowledged.
4. Social care needs to be acknowledged as being part of every day for so many people across the country. Social care employs more staff than the NHS, and unpaid carers are a hidden army who receive even less recognition than regulated care providers.  We have had Alison Holt produce 2 BBC Panorama programmes and even Ed Balls producing a mini series about the reality of life within social care. The very moving short television film “Help!” by Jack Thorne was an excellent insight into our experiences during the pandemic. Some of us have made videos and been interviewed on national media but this has only come about because of negative experiences within the care sector. We need to be given an opportunity to build on this and keep the momentum going, to use our voice to help unveil life within social care
5. We need to promote the positive side of the sector but also EDUCATE the general public on the structure and diversity of the social care sector. There needs to be clarity about the difference between the NHS and social care. A good place to start would be at school. This will be a long burn but children often help educate their own families by sharing what they have learnt at school. The unintentional “ignorance” about social care is across all strata of society
6. The prime changes need to be in the funding of social care whether it be the fees paid for state funded residents, respite for those being looked after by their unpaid carers or Funded Nursing Care paid by the CCGs. The lack of adequate funding is a direct consequence of the invisibility of the sector and reflects society’s value placed on it. The amount of time that we spend explaining to people who are first time users of social care services how the funding of their loved one’s care is structured is enormous. Often unpaid carers who have become carers by stealth and who have struggled for years, not wanting to ask for state help, have no idea what benefits they are eligible for and so highly visible education around this area within the general public arena would be of great benefit 

Question 7

1. See question 2 point 1 above. Until people working within the NHS value what paid and unpaid carers deliver, they cannot be our advocates. 1.2 million people being educated on the value and strengths of our sector would go a long way to raise the profile of social care. Unless they are given the opportunity to gain an insight, they know no more than the general public and make assumptions on which critical decisions are based.

Question 8

1. Covid-19 has had massive impacts on social care – some good and some not so good. The positives include opportunities to raise our profile (although not always for positive reasons) both locally and nationally, reaching out to people on furlough who then volunteered, bringing into sharp focus how we (selflessly) carried on providing care while others were told to remain in their homes and not work. Government grants were very welcome and allowed us to utilise them to improve conditions and infra-structure although the terms of the grants were very restrictive and money was not always spent on what was actually needed at the time. The closer links forged with the NHS due to necessity and an appetite to do so were one of the great successes

The negatives were/are that staff burnt out/ are left exhausted, staff left the sector due to burn out or due to not agreeing to be vaccinated (only for this to be reversed later when the impact a similar policy for the NHS would have on their workforce was realised), staff developed PTSD / anxiety etc and had lots of sick leave, government guidance meant that families were restricted on visiting which impacted enormously on the residents, family members and the staff. The constantly changing guidance, the outbreaks and loss of residents, the testing requirements, the related reporting requirements and generally the stresses involved with running a people based business during the pandemic with low pay and lack of recognition has led to a very disillusioned sector. The drop in resident numbers, the loss of residents in actual outbreaks and the compulsory closures of homes for “rolling outbreaks” have led to huge cash flow pressures and a need for providers to dig deep into their reserves which cannot continue for much longer. The difficulty of replacing the staff who have left has also led to massive recruitment (and affiliated) costs as providers have to look overseas to find staff. We are in a perfect storm and for some there is no way back to safe harbour. Covid-19 has brought the years of chronic underfunding and lack of investment from central government into sharp focus and yet we were expected to perform against all odds.  It highlighted that there is no parity with the NHS in terms of investment or in the terms and conditions that can be provided to staff

Better support for unpaid carers

Question 13

1. Unpaid carers are not valued by anyone apart from the person they are caring for and even then if that person does not have mental capacity, they may not appreciate them. These people are critical in caring for so many of our vulnerable people in society and yet many have to fight for paid respite when they are on their knees with exhaustion. Over the years many have told me that if they could have more respite then they could carry on looking after their loved one 24/7 for much longer instead of reaching exhaustion and having to let their loved one go into residential care. The financial costs of residential care far outweigh those of providing additional respite. It seems such a false economy in the long term. Unless someone has had to be a carer for 24/7 seven days a week they have no idea of the dedication these people have but even they have needs and this is often overlooked. If a carer’s needs are not met it undoubtedly has an impact on the ability of the cared for person’s quality of life

17 April 2022