A personal reflection on new beginnings after half a century of caring

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 enquiries@nhsiq.nhs.ukTo 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.

Dame Philippa Russell, Chair of the Standing Commission on Carers

Dame Philippa Russell, Chair of the Standing Commission on Carers

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!

Philippa Russell

Join in the Commitment for Carers conversation by adding your comments below, completing our questionnaire, or via #NHSThinkCarer on Twitter.

 

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9 thoughts on “A personal reflection on new beginnings after half a century of caring

  1. Dear Philippa. What a heart warming cry in support of carers everywhere. We must work together to improve care and support for you and for families, who, at this moment are often juggling their responsibilities as mothers, fathers, daughters, sons and employees. Thank you!

  2. This was good to read and about time We all work side by side and hope this is a promise to Carers I will keep my eye open for this to happen.

      • I think it is very important to promote a CIRCLE of CARE between the GP team, hospital and other Care professionals, those with the Long Term Condition and the Unpaid Carer. Encourage GPs to have a Register of Carers automatically and have all parties with the knowledge to support each other in their treatment and wellbeing, with an Emergency plan in place for when that crisis occurs-which it almost certainly will.
        As a Volunteer carer ambassador with Carers UK and a GP for 30yrs-now retired,a Carer for 8 years after retirement, I have found that GPs tend to just look at episodes of illness and NOT look at the whole picture. I say ‘Help and Support Carers to help the Medical professionals’ and keep people at home for longer. I have found that most GP practices have less than 1% of their Practice list Registered as Carers when it should be 10-12% Unpaid Carers, too, need to push forward their agenda.
        There needs to be a Culture change and more education for everyone.
        Mrs Bridget Leech

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