NHS Improving Quality is holding a listening exercise to find out what carers in England want and need from their NHS. The views we gather will help shape a series of ‘commitments for action’ that NHS England will take forward. For more information please visit our website. You can also complete our questionnaire, or send your views to firstname.lastname@example.org. To help launch the listening exercise, Dame Philippa Russell has kindly written a guest blog post, in which she reflects on her experience as a carer.
In November 2013, I celebrate a half century of caring! As Chair of the Standing Commission on Carers, I am excited by (and hopeful of) the current ‘sea changes’ within both health and social care. We have a National Carers Strategy and there is good evidence of better integration between health and social care. At last carers’ own and often much neglected health and well-being are going up the national agenda. We know what good looks like. The challenge is to ensure that it is shared and disseminated. Carers are keen to be active partners in supporting and progressing this agenda.
Why carers are everybody’s business
Carers matter – they also represent ‘value for money’ at a time of diminishing resources, helping to reduce the time patients stay in hospital; enabling health care to be delivered in the family home and of course being experts in the care of their friend or relative. The number of carers proving unpaid care of 50 hours or more a week has increased by 26% over the past decade. In effect the 6.4 million carers across the UK are a vital component in the NHS (and social care) work forces!
Moving into a new world of caring
In order to understand the future, it is sometimes helpful to understand the past. One of the biggest challenges for caring must be the end of arbitrary demarcation lines between health and social care. When the Welfare State was created, life of expectancy was short and some health conditions like dementia were virtually unknown. People with learning and other disabilities died young. Now, with improved health care, I realise that I am part of the first generation of parents whose disabled children will outlive me. The thought of carer succession planning is challenging for us as well as the NHS!
Fifty years ago, my son’s paediatrician challenged me to ‘change not complain’ and see myself and other carers as allies with the health professionals, the wider public sector and communities in redesigning support to enable ourselves as carers and our relatives have ordinary lives. I have tried to follow his advice. As my son grew older (with increased impairments), my mother developed dementia. One of my grandsons was diagnosed with an autistic spectrum disorder. My husband had an accident and a stroke. Suddenly I was one of the new generations of ‘sandwich carers’, often juggling very different needs.
The pursuit of quality
For carers, the best possible support is high quality and safe provision for their relative. But regulation on its own cannot ensure quality. The Winterbourne View and Francis Reviews make alarming reading for carers. They remind us that ‘care and support’ can themselves be abusive. But, importantly, they give us clear messages about improvement in quality often requiring ‘whole system change’. As Robert Francis commented at a recent King’s Fund event,
‘The hospital bed is neither the beginning nor the end of the patient’s journey. We must understand better the care pathway, the family history (ie the carers) before admission and the actions which follow discharge back to the community.’
For carers, taking the care out of hospital can be challenging. With an ageing population (the majority of people over 65 having two or more long term conditions) the interface between home and hospital will become ever more important to families and patients alike.
From complaints to co-production and personalisation
We know what good looks like and much of the support provided through the NHS is good. But we have lived through what I regard as a ‘complaints culture’ rather than creating the communication systems and the conversations that enable early concerns to be raised and quality of care to be improved. Now we need a new focus on ‘co-production’ and partnership with carers not only as providers but as expert and valued strategic partners in care.
The Care Bill for the first time gives carers ‘parity of esteem’ with the people they support in terms of local authority assessment and eligibility for support. I hope and believe that if we give carers similar parity of esteem with patients within the NHS, we can truly work towards the integration and positive outcomes envisaged by both the NHS and its partners.
I end with a reflection that high quality care and support have to be seen as a collective responsibility, recognised and valued by communities as well as families. I (as a family carer) and the Standing Commission on Carers welcome the challenge!
- This is not my mum (nhsiq.wordpress.com)
- Three into one doesn’t always go – A personal experience of caring (nhsiq.wordpress.com)
- Family carers – ‘for the love of it’ (nhsiq.wordpress.com)