In his speech to the recent Conservative Party conference Sajid Javid the Secretary of State for Health and Social Care said:
The state was needed in this pandemic more than anytime in peacetime. But government shouldn’t own all risks and responsibilities in life. We as citizens have to take some responsibility for our health too. We shouldn’t always go first to the state. What kind of society would that be? Health – and social care – begins at home. Family first, then community, then the state. If you do need support… we live in a compassionate, developed country that can afford to help with that. There are few higher callings than to care for another person.
It’s a quote that came in for a lot of flak and humour on social media but in a certain way he’s right, health and social care does always begin at home and in our communities, but his speech was worrying on a number of levels not the least of which was the fact that it did a huge dis-service to the millions of unpaid carers who weren’t mentioned and whose quiet work contributes billions to the UK economy and more importantly to the quality of the lives of their loved ones. Unpaid carers who also played and are still playing an enormous and largely unacknowledged role in helping the country to cope with the pandemic
But in a speech that repeatedly focused on a desire to reform health and social care, perhaps the most worrying thing was the insight that it gives us into how he understands the relationship between the state as a provider and commissioner of health and social care and the people. The Secretary of State appears to think that the role of the state in health and social care is separate from people’s homes and communities and an option of last resort. The state is a backstop, something that gets involved when all other options have been tried and failed. Indicating an approach to reform that is likely to be driven by an outdated and ideological conception of the relationship between the state and the individual, one that is rooted in the notion that individuals and states are opposites, and that one symbolises freedom and responsibility and the other taxation and big government.
The reality is often far more complex than that. For most of us, some measure of state involvement is a part of our everyday lives and for those with health conditions and disabilities and whose lives exist at the juncture between family, community and state, Javid’s speech gives us an early indication of his direction of travel as Secretary of State. It also gives an early indication of a failure to understand that the key to successful reform of the health and social care system isn’t going to be a question of one then the other – of home, then community then state or of individuals taking responsibility for their lives or not – it is a question of timeliness and seamlessness. A question of the state, the community and the family being able to intervene and support each other at the moment at which it is most likely to make a difference. When intervention is most likely to prevent ill health and most able to support an individual in their homes and in their communities. And perhaps most importantly for a government minister, when the action of the state is most likely to be an effective use of a government’s resources and people’s taxes.
Despite what the Secretary of State appears to think, effective state action isn’t something that can be imposed in isolation. As the example of inpatient hospital provision for autistic people and people with learning disabilities illustrates – without the support and involvement of individuals and families the intervention of the state is invariably crisis driven and because of that it is often ineffective and unnecessarily costly. Every year hundreds of millions are spent on crisis provision that is too often of poor quality and as repeated reports have made clear it is often damaging and in breach of the individual’s human rights. As the Health and Social Care Committee has stated:
The poor treatment of autistic people and people with learning disabilities has been a long-standing problem for the NHS and care system. A now notorious example of this was exposed by reports and investigations into the Winterbourne View hospital which took place in 2011 and the fact that these issues have not been resolved even a decade later is a scandal in its own right, quite separate to the original tragedy. Although successive governments and NHS England & Improvement have focused on supporting autistic people and people with learning disabilities from Winterbourne View and many other institutions to live independent and fulfilled lives in the community, there remain over 2,055 people in secure institutions today where they are unable to live fulfilled lives and are too often subject to treatment that is an affront to a civilised society.
Health and Social Care Committee Report – The treatment of autistic people and people with learning disabilities
Not only is the treatment of autistic people and people with learning disabilities who are in crisis sometimes “an affront to a civilised society”, it is also an ineffective use of government money. In a briefing paper submitted to the Health and Social Care Committee and drawing on published data, I estimated average per capita living costs for people with learning disabilities of
- £80,397 for people living in residential accommodation
- £38,699 for people living in supported living
- £13,082 for people living with family or friends (This would be a maximum figure if family and friends are allocated the whole of the direct payments budget)
This compares to the average cost of an inpatient hospital support package of:–
- £214,230 identified by the National Audit Office for the year 2013-14
Mark Brown – Support in the community – what we know about costs.
It is clear that the greater the level of state intervention, the greater the cost. And the more successfully people are able to live in their homes and in their communities the better the return there is on government expenditure. Yet despite this, people with learning disabilities and autistic people who are struggling and in danger of going into crisis repeatedly complain of being unable to get support for themselves at home and in their community. In this context the separation of home, community and state that exists in Sajid Javid’s mind is real and it is not only counter-productive and ineffective it is also fiscally irresponsible.
This lesson is not only valid for people with learning disabilities and autistic people it is equally valid in a range of other areas from mental health to diabetes and cancer. Early intervention improves lives and it saves money. The ability of the state to target support and intervention early, in the family and in the community, has to be at the centre of any reforms to the health and social care system – because as is so often the case – if it isn’t, it won’t be government ministers who’ll be owning the risks and responsibilities of things going wrong, it will be us.