Life is Beautiful

Jane Campbell is returning to her roots as a campaigner after five years as chair of the Social Care Institute for Excellence. Mark Ivory spoke to her about her achievements, the future and why she doesn’t feel part of the social care club

When she was appointed chair of the Social Care Institute for Excellence five years ago, no one was more surprised than Jane Campbell. A year earlier Campbell had been waving a placard
outside then health minister John Hutton’s office to demand fairer service charges for disabled people and, by her own admission, had “brought London to a standstill twice” during earlier disability rights protests. In the government’s eyes, she says, she ought to have spelt trouble.

Instead it rewarded her with the leadership of the organisation charged with spreading knowledge of good practice across social care. Having been a key disability campaigner, she found herself part of the establishment, working to modernise services with the Department of Health, the General Social Care Council and what has since become Skills for Care.

“For me as a disabled person, breaking through the barriers was like it was for women and for black people 20 or more years ago,” Campbell says. “I am one of the few people who, as full-time users of health and social care services, have been able to infiltrate the wider world of public services and give them another dimension.”

At 46 she hands over the reins this week to her successor as Scie chair, Allan Bowman. She believes that her legacy is safe: after a slow start Scie is building a robust evidence base for social care which bears the marks of the user movement Campbell has fought for all her adult life.

“I feel very proud of what I’ve done at Scie,” she says, “but I’ve never felt part of the club and I still don’t. Social care leaders are very cliquey so I always have to force myself into the conversation at events, ask people to sit down so that I can talk to them from my wheelchair. Thank God I’m assertive and bossy because, without that, I think I would have floundered.”

But it is a tribute to Campbell’s remarkable strength of character that she has made her impairment – she was born with spinal muscular atrophy – seem like the least of her challenges.

She and her chief executive, Bill Kilgallon, have had to manage expectations of Scie’s performance when some of its political masters might have hoped for a quick fix. The clear-cut scientific evidence base of its health counterpart, the National Institute for Health and Clinical Excellence(Nice), may have given rise to the false hope that the same could be achieved in social care, where, as Campbell puts it, the “messy, often conflicting, messages about people’s lives” don’t lend themselves to a list of simple cures. She made her antipathy to the NHS-style diagnostic approach to social problems clear in Whitehall – “there isn’t always one answer, what’s good for me isn’t necessarily good for you”.

She admits it has been “frustrating” to those who wanted to see Scie churning out products. “That was never going to happen. It takes time to formulate processes and procedures, and to build the capacity to implement them. Some of our critics said we were stuck in an ivory tower, but we were busy getting our heads down creating something entirely new.”

Relations between Scie and the DH hit a sticky patch during talks about the future of the Care Services Improvement Partnership, set up by the department to boost service delivery in line with  the white paper, Our Health, Our Care, Our Say. Proposals for a merger with the CSIP were scrapped when it became clear that the two sides could not agree on its leadership, prompting DH insiders to claim that Scie had been “colonised by the user movement”. It was a hurtful accusation, though Campbell is philosophical about it: “That was defensiveness in the department  about some of their own weaknesses. When people get defensive they say silly things.”

Working relations with then health minister Stephen Ladyman were “less com-municative” than they should have been and, as she puts it, the CSIP discussions “came from nowhere”. She says: “It would be crazy to say I wasn’t disappointed that it didn’t work out, but I don’t think that we’ve been damaged by not taking it on. I think we’re ready now to move on to the second phase of our development, which is about making Scie a household name and ensuring that the knowledge and good practice we’ve accumulated is an everyday tool.”

As for the future, apart from acting as an independent policy adviser to the government, Campbell plans to use her position as a disability rights commissioner to help shape the organisation that will soon replace the DRC, the Commission for Equality and Human Rights. It will also mark a return to her roots as a disability rights campaigner with the launch of her own website to promote the dignity of disabled people and to carry on her fight against euthanasia, including Lord Joffe’s proposed legislation to allow assisted dying.

She took a close interest in the recent high court case involving baby MB, from whom doctors wanted to withdraw life support because, in their view, his existence had become intolerable. Like Campbell, the 18-month-old boy has spinal muscular atrophy. The court decided against the medics but, for Campbell, doctors’ attitudes are an outrage.

She says: “I’ve never been an angry person, except when it comes to human rights abuses. I was incandescent about the way they described MB. All you heard was how tragic he is, yet he clearly gets enjoyment out of life even though he is paralysed. There are times when I can’t move a finger. That doesn’t mean life isn’t worth living.”

She is unconvinced by claims that MB’s life expectancy is a matter of months because he has the severest form of SMA. “Diagnosis is not a science. Doctors said I had the worst form, but revised their diagnosis when I survived. My mother was told I wouldn’t live, that I’d be paralysed and that I should be allowed to die. Luckily she fought for me, but it still hurts that that was so nearly my fate because I know that 20 per cent of these babies do come through.”

She came through the experience to campaign against the medical, “tragedy” model of impairment. The social model, which Campbell has done so much to popularise, starts from the premise that all lives are equal and that people are “disabled” by their environment, requiring support to participate and flourish on the same footing as others.

She says: “The social model was a road to Damascus experience for me because suddenly I could throw off all the guilt and oppression of being a disabled person. I couldn’t change me, I wasn’t going to walk, swallow or give long speeches, but I could do other things in other ways with the help of others. That was total liberation.”

Further along the same road were the Disability Discrimination Act 1995, direct payments and the National Centre for Independent Living, in all of which Campbell had a key role and which have become a byword for the autonomy of disabled people. But the budget crisis among centres for independent living has been a huge setback. “I can’t see the really progressive independent living packages getting the priority they deserve – it was happening 15 years ago but it’s not happening now.”

As the white paper turns the NHS ship slowly towards the community, Campbell worries that the virtues of independent living will have to be proclaimed anew. “It’s taken 20 years to build user involvement in social care. Now we have to do it again with health to get them to understand that we’re not patients and we’re not to be fixed.

“The medical model still haunts me and I have to live with the fact that a lot of society still thinks that my life is not worth living. I was put on the ‘do not resuscitate’ list when I was ill in hospital only two years ago. Of course I’m going to say I’ve got a few worries, but I never give up.”

● Go to www.livingwithdignity.info