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Dame Philippa Russell

Dame Philippa Russell has been caring for her disabled
son, Simon, for over half a century. Formerly Chair of
the Prime Minister's Standing Commission on Carers,
and now a Vice President of Carers UK, she gives Chief
Executive Heléna Herklots her personal and political
account of how caring has changed over the years.

DamePhilippaRussell main image

Your son was born around the time that the Reverend Mary Webster was drawing attention to the urgent need to support single women carers. What was caring like for you at the beginning? What kind of support did you get?

In the late 1960s, learning disability carried considerable stigma. Families like ourselves were often offered long-stay hospital places and would have another child. We did not go down that route but we were fortunate. We had a charismatic paediatrician, Dr Ronnie McKeith, who believed that every disabled child matters and who took parents very seriously.

But children with learning disabilities had no entitlement to education under the 1944 Education Act and I well remember the typewritten letter saying that our child was 'ineducable' and could not be registered at school.

We and other parents then began our campaign to get our children the right to an education. The Education Act 1970 amended earlier legislation and gave all children the right to education. That was my first real experience of parent/carer solidarity!

When you joined the Council for Children's Welfare in 1968, was that career move borne out of your own personal experience?

We were a foreign office family, moving around every three years. In many ways it was an exciting life but in other ways Simon's increasing bouts of ill health; his very limited speech (and inability to learn new languages) and the prospect of changing doctors, psychologists, teachers etc every three years daunted us. We came home.

My husband commuted to Brussels and I was back in London. I wanted to work and Dr Ronnie McKeith persuaded me to work for the Council for Children's Welfare. Our major pieces of policy work during my time were around the closure of the long-stay hospital wards and improvements in support for one-parent families.

My next role was of course to establish the Council for Disabled Children, the first 'umbrella' organisation bringing together the third, public, professional and independent sectors with an interest in families and disabled children. The Council was an outcome of the Eileen Younghusband Report, which for the first time prioritised the views of parents themselves as partners in improving outcomes for their disabled children.

The carers' movement is full of individuals using their own experience and passion to draw carers together for recognition and support. Who has inspired you?

Hard to be specific but I would start with the families I knew and have now known for decades – parents like Maurice Collins who set up Kith and Kids, a very dynamic North London support group for parents of disabled children. We met Rose Fitzgerald Kennedy, the mother of President John Kennedy, on one of her UK visits. She had an adult daughter with a learning disability – Rosemary – and she was a tireless campaigner for the rights of people with learning disabilities and their families. She believed in peer support and solidarity and she was an avid correspondent, keeping all of us in many different countries on our toes!

As well as caring for your son, you've also looked after your mother. What qualities have helped you in your caring role?

My mother was diagnosed with multi-infarct dementia shortly after my father died. She was physically very fit and active right up to her death, but she was also very much at risk because she had no sense of danger and was immensely creative in disappearing from the house when we were not looking. She wanted to remain in the Cumbrian family home and we managed for several years with paid careworkers in the week and 300-mile round family trips every weekend. I think I had decided that patience and humour were integral to caring for someone with dementia and my views were confirmed!

One weekend we had driven up, a miserable drive with pouring rain and wind. A nice chicken and leek pie was in the oven and the family were enjoying a glass of wine whilst Lucy the dog licked her lips appreciatively by the stove. Suddenly there was a huge explosion, clattering glass and plaster and the lights going out. Peering into the hall we saw a big hole in the front door. The pie was lying intact on the garden path (with the dog hovering, not knowing whether to take an illicit bite or not!) Lucy had apparently changed colour from pale gold to pink in the bright street lights and we realised that she was covered in salmon! The police arrived shortly afterwards, the neighbours convinced that a bomb had gone off. It turned out that my mother had surreptitiously sneaked eight tins of salmon from the larder into the cooker along with the pie. They had exploded with such force that the oven door burst open, the pie shot through the kitchen, hall and front door and salmon coated the kitchen like moss.

At the end of the great mopping up we were exhausted – and hungry. I have to admit that we retrieved the pie from the front path (still guarded by a yearning dog) and we ate it (giving the dog a piece for demonstrating remarkable restraint!).

You had to laugh (though I didn't laugh the next week as the insurance company told us they would not insure the house again.

The terms of reference for the Standing Commission on Carers say that the body should 'act as an advocate for carers while paying due regard to existing and likely future fiscal and spending limits'. For many of our members, those fiscal and spending limits make life very difficult indeed. How have you negotiated that balance in your seven years as Chair?

The Standing Commission on Carers was and is an independent body, expected to give honest and informed advice to Government. But to be effective and to be invited into the right places, we had to strike a balance and sometimes that would inevitably mean showing integrity and credibility but (because we need to work across all sectors and all political parties) not being seen as 'activists'.

I believe that we need activists to get change but I also believe that we need different tiers of activism and advocacy.

I do worry that there seems to be a belief in some political quarters that 'influencing' by the third sector is bad. In fact, one of the great markers of progress over the past few decades has been the 'co-production' between Government and the third sector in ensuring the legislation, regulations and guidance are fit for purpose. Carers and organisations like Carers UK have played a hugely significant role in the development of the Care Act and will play an equally significant role in its implementation.

When I look back at the development in carers' rights over the past 50 years, I can see how much has changed. What do you think has been the most important development – whether in your personal experience as a carer or in your broader experience as an advocate and leader?

Recognition and respect. The disability rights movement taught me that disabled people and carers are not 'enemies' as is sometimes portrayed (ie carers seen as overprotective and low in expectations) but actually partners. I think the carers' movement can learn a lot from the disability movement's equality agenda and also the presumption that disability and illness are still compatible with a good life.

I'm also acutely aware of how much further we have to go. For too many, being a carer still results in isolation and hardship, which simply doesn't square with the absolutely vital role carers play, in families and in society as a whole. What do you think is the most important shift that we are yet to see?

Recognition again – and a value placed on caring. I also think that society across the age bands needs to acknowledge that at some point in our lives all of us are likely to be carers.

Too often caring becomes a withdrawal from ordinary life, whereas it should be seen as integral to family life and community inclusion. But to achieve this, we need to raise the profile of social care and end the arbitrary lines drawn between what is health and what is care and support.

What were the high and low points of your experience as a carer?

Being tired, worst of all being constantly anxious. There is the awful fear that you might be ill, something might happen. I also think it is very hard seeing someone you care for deteriorating.

Much of care is about coping with a downward path. You can make that pathway as rich and fulfilling as possible, but the fact is that it is going down. On the plus side, you meet a fantastic range of people.

You also do have some satisfaction that you are a survivor!

Best of all, sometimes life just seems normal and I think of the Philip Larkin Poem to the daughter of a friend, wishing her to be 'ordinary'. For carers, an ordinary life is a big achievement!

This year we've got our first charity single called 'I'm Letting Everybody Know'. What would you let everybody know? And apart from this single, what would be your Desert Island Disc?

Beethoven's Pastoral Symphony – because in freer and younger years, I remember playing it in an orchestra in Oxford and because it reminds you of the huge diversity of the world and countryside out there.

What would you say to those reading this article who have just started on their journey as a parent carer?

Friendship, solidarity, information exchange all matter. But above all else, remember that caring is part of life and don't feel that you face isolation and seclusion unnecessarily.

Join Carers UK for a start and you will be able to find the support you need and importantly change things for the better. My paediatrician told me nearly 50 years ago that if I did not like things, I – as a parent carer – should help to change them. His advice was right – carers are no longer a silent minority and there are real opportunities ahead for good and fulfilling lives.

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