Health — House of Lords, 2015-11-26
Topic: Mixed Topics
Jane Susan Campbell (Crossbench, Unknown): My Lords, I thank my noble friend Lord Crisp for tabling this very timely debate. Over the years, my noble friend and I have often exchanged ideas on what I like to refer to as the empowerment model of health and social care well-being. That was the model that drove my leadership of the charities the National Centre for Independent Living and, after that, the Social Care Institute for Excellence, where I was privileged to be founding chair from 2001 to 2006 Michael Marmot, in his book The Health Gap, argues that not health services but the social determinants of health are more important in determining the health of the population. Like Marmot, I believe it is more important to change the conditions in which people live—to empower people holistically—than simply to address their medical condition or their care need, which disabled people have described to me as the medical model It is more important to empower people in health and social care than simply to address their immediate medical conditions. Therefore, the National Centre for Independent Living used the empowerment model to support disabled people to move from dependency-creating care provision to independent living support. Our work was born out of the Community Care (Direct Payments) Act, legislation that was conceived and largely implemented by disabled people. For the first time in our lives we had direct control over our social care budgets. I have to say that traditional care providers were very opposed at the time but, with the assistance of enlightened directors of social services, civil servants and a very enlightened politician, the tectonic plates of power shifted from "the professional knows best" to "the client knows better" This care revolution could not have been achieved without the national infrastructure of local centres for independent living. These local centres are largely run and controlled by disabled people, who provide advocacy, advice, buddying, volunteering and jobs. Over 15 years, I saw people society had written off come out of residential care, long-stay hospital wards or their parents’ homes and begin to live as rounded human beings. Relationships were formed, families were made and children born. Things have rightly progressed over the years, and now people with learning disabilities also enjoy the same right to choice and control over the way their support is delivered and experienced. So, too, do people with enduring mental health challenges, who developed their own empowerment model, the recovery model, which demands greater focus on life chances rather than more psychiatrists, more treatment and more loneliness, pushing a culture shift in the provision of mental health services There is rich evidence that the independent living movement drove a culture shift that has led to a wider personalisation approach and now, at last, it is beginning to catch on with personal health budgets. But I remind noble Lords that this was conceived by the people who have the condition and not the experts It really baffles me why, when the economy shrank, local and national politicians decided to cut first the independent living infrastructure that is necessary for progressive personalisation. I remember campaigning for a national independent living scheme, which became the Independent Living Fund, over 21 years ago. It was the epitome of the independent living empowerment approach, yet again it was sadly cast aside without a government strategy to ensure its principle and outcomes were not lost when transferred to local authorities Independent living pays for itself again and again. It is well evidenced that people who live independently in the community with the right support lead healthier and more cost-effective lives. It is the very basis of health and well-being creation, where professionals enable, facilitate and inform, and the service user learns, takes control and lives—not just survives Finally, I congratulate the Government on the Chancellor’s spending review statement yesterday, allowing as it does local authorities to levy a new social care precept of up to 2% on council tax. This is good news. But a word of caution: let the £2 billion investment be directed at social care that enables the service user to become an active, empowered citizen Winston Churchill said of scientists that they need to be, "on tap, not on top" We need their expertise, but for God’s sake, do not let them run the country. I would argue that the same applies to health and social care professionals: we need their expertise, but for God’s sake, do not let them run people’s lives. I suggest that legislators, policymakers, economists and politicians should seriously reach out to disabled people and the service users and let them be part of the solution, not a problem to be dealt with. Perhaps we could give leadership to my noble friend’s health-creating society and not simply be the users of it.