SCIE opinion - 10 June 2013

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Photograph of Philippa Russell

In Carers Week I’m resisting the term “older parent”

From Dame Philippa Russell

As another Carer’s Week arrives, I reflect that, not only do carers have a busy life of their own, but they also support many other busy lives!  Often we are our family members’ gateway to an ordinary life, as well as being advocates, and sometimes supporters, for the friendships and “ordinary activities” that actually make up a good life for most of us.

We also of course do a good deal of hands-on caring.....

I realise that I am now what is often and unflatteringly described as an “older parent”!  My son is nearly fifty years old, which puts me in a category of my own and one that I resist and resent. As someone who has lived in other countries, I welcome the UK’s generally positive attitudes towards disabled people and their rights to ordinary lives. But, I also often despair of the negative attitudes towards, and low expectations of, older people.  My disabled son will also become old one day and I wonder about the quality of his life. We need a “Making it Real” for older people! This is run by TLAP, a partnership focused on driving forward work with personalisation and community-based social care.

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. His support workers are in turn well supported and, if the shadow of austerity was not on the horizon, I would be quietly confident about the future.  Simon is living the life envisaged by SCIE’s Co-Production Network. I can see that he is part of a local community and he has a good life, just as “Making it Real” suggests should happen. But I am also acutely aware of the economic threats to independent living.

Looking to the future, there is a challenge.  I know that I am one of the first generation of carers whose disabled children will outlive them. Caring is not only about the routine and sometimes, heavy, caring roles that families assume. Even with good support, we can feel tired and isolated. We welcome the Care Bill’s introduction of the concept of “parity of esteem” between carers and those they support, for the first time offering the prospect of whole family assessments and care planning. 

I think we now know “what good looks like” in care and support. We realise the importance of solidarity; between users and carers, providers and commissioners and, very importantly, with local communities and their citizens. There are now over 6.4 million carers; those numbers are expected to rise to 9 million by 2037. An increasing number of those carers will themselves be old or disabled.  Mutual caring is a relatively new phenomenon but it is here to stay. So, we have to develop a different agenda for social care and support. In the future we will all care!

We must open up our communities; and I look to SCIE’s Co-Production Network to play a major role in showing how we can do things differently. Emerson said that the “greatest resource on earth is friendship” (ie relationships) and my big ambition for my son is not so much the number of hours’ support he gets a week, but whether that support in turn helps him in making and sustaining the relationships (and developing the skills) to have a good life.  “Wellbeing” must be at the heart of any personalised support system and we cannot achieve it without new partnerships

If 70% of users of personal budgets in the Second National Survey feel that they “work for them”, we have a personalisation pathway for the future. But, importantly, we must also look again at the kind of society in which we want to live in, and redefine what exactly we mean by “care and support”.  A recent report from University College, London called “Emotion, Space and Society”, demonstrates the negative impact of isolation and loss of relationships, for 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 support systems that address immediate practical and personal needs; we also have to give parity of esteem to supporting and reinforcing the relationships that determine quality of life.

Care Services Minister, Norman Lamb, has recently launched a new initiative to support “pioneers” in integration. I welcome the term “pioneer”, for although we have achieved much, there is still far to go. The Co-Production Network has, of course, been and will be, part of that pioneering journey. The personalisation agenda has taken us across a new frontier in terms of self-directed care and support. For now, we have to manage the financial challenges, but also see them as an opportunity to try and do things differently. As a carer (now caring for more than one family member) I hope I can live up the challenge!

Dame Philippa Russell

Dame Philippa is Chair of the Government’s Standing Commission on Carers and, as a former Director of the Council for Disabled Children and a Disability Rights Commissioner, a disability rights advocate. She is a member of the Think Local Act Personal Programme Board and has long been a passionate believer in the need for co-production and the need to get away from seeing carers and users of services as “them and us”.

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