As another Carer’s Week (9th to 15th June) passes, I reflect that England’s 5.4 million carers (expected to rise to 9 million by 2037) are the true pioneers (and partners) in ensuring that our relatives do indeed live well, live longer and achieve the ambitions around health and well-being within the Public Health agenda. But caring can also bring multiple demands and sometimes our own health and well-being are sadly neglected. As Carers UK’s 2014 annual survey on the State of Caring found, 50% of carers are depressed, 82% very stressed and 73% very anxious indeed.
Looking to the future there is a challenge. I know that I am one of the first generation of carers whose disabled children will probably outlive them. In effect, I have had a career in caring that will probably last until the end of my life! Caring is not only about the routine and sometimes, heavy, caring roles that families assume. We want to care, but even with good support, we can feel tired and isolated. We also frequently admit that we are often too busy to bother about our own health. Therefore, we welcome the concept of ‘parity of esteem’ between carers and users within the Care Act, for the first time offering the prospect of whole family assessments and care planning. We also warmly welcome the NHS commitment to ‘parity of esteem’ at long last between physical and mental health.
I realize that I am now, what is often and unflatteringly, described as an “older parent”! . My disabled son is also ageing and I wonder about his future. Sadly we have compelling evidence that some citizens are less equal than others in achieving the goal of healthy and fulfilling lives. As a carer, I am alarmed by the conclusions of the 2013 Confidential Inquiry into the Premature Deaths of People with Learning Disabilities. We as a family have had to argue at times for our son’s right to the diagnostic investigations, treatments and programmes that would be taken for granted if he was not disabled. But, conversely, we have also experienced the positive impact of personalisation and a personal budget that encourages and supports a safe and healthy lifestyle and emotional well-being.
In my (nearly) half century of caring, I have seen positive changes. My son, now middle-aged, was offered a long-stay hospital place when he was born. Now he has his own house, is endeavouring to set up his own small micro-enterprise, growing vegetables and enjoys a creative and personalised day service. He also uses a number of inclusive ‘well-being’ services in his local community, which I hope will support a healthy future.
In the future, as we age, we know that co-morbidity will become more common, maybe the norm. It is estimated that the numbers of people living with more than one long-term condition will increase from 1.9 to 2.9 million in the next decade. We also know that 33% of people with long-term conditions are also likely to develop associated mental health problems and we can see that many families are now struggling with multiple and inter-generational care. In effect, we cannot ignore the shift to co-morbidities rather than single illnesses and we must tackle new physical, emotional and social challenges.
If we want to deliver the ambitions in Living Well for Longer, we must acknowledge the importance of solidarity and co-production between users and carers, providers and commissioners and, very importantly, with local communities and their citizens. An increasing number of carers will themselves be old or disabled. We need a very different agenda for health and social care because in the future we will all care! In effect, “well-being” must be at the heart of any personalised health and social care support system and we cannot achieve it without new partnerships
Emotion, Space and Society, a recent report from University College, London, demonstrates the negative impact of isolation and loss of relationships on the well-being of older and disabled people. We are apparently at a 26% greater risk of dying prematurely or becoming ill if we lack the relationships that make life worth living. So my final comment would be that we not only have to develop a public health agenda that addresses immediate practical and personal needs; we also have to give parity of esteem to supporting and reinforcing the relationships that determine quality of life.
Dame Philippa Russell is the Chair of the UK Standing Commission on Carers