We have seen great progress in developing and delivering the personalisation agenda over the past couple of years. 70% of over 3,000 users of personal budgets in the Second National Survey reported that personal budgets “work for them”. The same survey found that 60% of carers reported a better quality of life through personal budgets, these are encouraging messages.
However, Carers UK’s State of Caring (2013) also asked over 3,000 carers about their personal experiences of caring. Almost a third of those caring for 35 hours or more received no practical support with caring. Over 56% had to give up work to care, with 84% reporting a negative impact on their health. We know that personalisation can change lives. But sadly we still have some way to go in taking personalisation forward for all carers.
The Standing Commission on Carers, during a series of fact finding visits in 2012/13, found similar differences in the experiences of families and their expectations of personalisation. Some were frightened of any change in an age of austerity which might lead to being asked to ‘do more for less’ but many others (like myself) have warmly welcomed the opportunity to genuinely co-design support round the family and to use community resources in some very different ways.
As one (satisfied) carer commented the other day, ‘Our real challenge is to enable all carers to understand that personalisation is much more than a personal budget or direct payment. It is a different way of making care and support real for you, of thinking beyond eligibility for a service to what you and your family actually want from life.’
One of our greatest challenges for the personalisation agenda must be the end of the demarcation lines between health and social care. We are an ageing society. More people are surviving longer with complex disabilities and often multiple health conditions. When the Welfare State was created, many health conditions like dementia were virtually unknown. People with learning and other disabilities died young (or were consigned to institutional care). Now with improved health care, I realise that I am part of the first generation of parents whose disabled children will outlive me! But improved survival and continuing independence comes at a cost.
Norman Lamb recently announced the long-awaited ‘pioneers in integration’. Integration matters, not only in avoiding expensive duplication of assessments but also in avoiding the bureaucracy that is the antithesis of good personalisation. The next challenge is to use the unique opportunity within the pioneer sites to explore, support and demonstrate.
Carers are key to integration, to relocating both health and social care in families and local communities and achieving the outcomes set out in the NHS Constitution and Mandate. The advent of personal health budgets from 2014 and the possibility of integrated health and social care budgets from 2015 offer huge new opportunities to improve and personalise the health and well-being of both users and carers. NHS England is keen to raise the profile of carers and we have a new public health agenda.
Emerson said that the “greatest resource on earth is friendship (ie relationships”) and my big ambition for my disabled son is not so much the number of hours’ support he gets a week but whether that support helps him to make and sustain the relationships to have a good life.
Well-being must be at the heart of any personalised support system and we cannot achieve it without co-production not only between people but also between the various services and professionals groups. The Maoris in my native New Zealand have a term, ‘whanau’, which means a bringing together of the family and all relevant people around the person needing care and support.
I hope that the integration pioneers will develop personalised systems which work together to respect and support individuals and families and make personalisation ‘live’ across health, social care and other sectors. In effect we are at a ‘next stage’ of the personalisation agenda with the challenge to embed personalisation within the new NHS. We are now living through this transition phase, with big ambitions and all the challenges of an age of austerity. As the National Co-Production Advisory Group has often said, ‘in tough times, we need something to aspire to!’ I hope that the next phase of integrated co-produced personalisation will meet that challenge!
