I am honoured to have been invited to write a response to Andy Burham’s recent speech on his vision for an integrated health service, in relation to how it affects disabled people. Before I begin I think I should assist in avoiding any confusion by explaining I am not that Simon Stevens, the one in control of health services in England. Instead, I am an independent disability consultant with 20 years experience of social care as a service user and someone working in the field in many ways.

Labour is promising a fully integrated health and social care system hailed as one service that meets everybody’s needs. It should be firstly noted this is very different to the parallel ‘National Care Service’ they were proposing just before the last election. While the integration of health and social care looks logical and promising, for disabled people of working age particularly, this concept could be quite damaging.

To understand this, it is important to explain some context. Labour left Government in 2010 when personalisation was the key theme of social care policy. It must be understood that personalisation was a professionals friendly step-down to full independent living as defined by the old disability movement. At this time, personalisation was already a disappointment to most as professionals have watered it down to meaningless words, but it was better than nothing.

The last 5 years has seen Winterbourne and the rise of the carers movement as the right of carers appears to have been given priority over service users by this Coalition government. At the same time, a new and vocal ‘sick and disabled’ movement has grown out of the opposition to the welfare reforms, demanding welfare over inclusion and independent living, leaving many disabled people, particularly those with high support needs, out of the political agenda. This means Labour has lost its historical links with the independent living agenda as it now simply sees disability as a welfare issue as it promises to deliver Iain Duncan Smith’s reforms better than he could.

This means the integration agenda could be a convenient opportunity to retire personalisation as the priority appears now to be reducing hospital admissions and bed blocking, rather than a quality of life as social beings which people require to be included and active citizens. The priorities scare me because it has the potential to undo social care and under the control of health, potentially revive long-stay hospitals as a convenient way to cheaply manage people.

Social care is not just about preventing falls or allowing quicker hospital discharges. If we add the ever growing power of the carers movement, which has mostly squashed independent living out of the agenda, I predict things can only get worse for disabled people unless there is a major shift in the culture of health and social care towards independent living and including social based outcomes. It is highlighted by Andy Burham’s remark that ‘severely’ disabled children now live longer and may even need adult services. This is a very odd thing to say as it is firstly totally out of date as there is not a sudden crisis in the transition between child and adult services, a problem that has always existed. But more worrying is that it shows some welfarist prejudice, as he suggests children with high support needs just need warehousing, under the direction of their carers (as no one has parents anymore), to continue into adulthood as the need for a decent education and employment opportunities appears to be irrelevant.

Labour’s policy is confirming the general welfarist thinking on disabled people in terms of those fit for society and employment opportunities, and those who are unfit for society. When Labour still wants to ‘look after’ old people like they are all war heroes without a mind of their own, it is clear disabled people who require social care are automatically deemed unfit for society, mindless objects of pity who will be controlled by this integrated system.

I want Labour to be fully committed to independent living and inclusion for all regardless of age, but I fear they will simply set up a new and improved Independent Living Fund, reinforcing the two tier system we have now where only those who demand independent living gets it, where people like myself remain ‘lucky’, while the rest are warehoused or left as the property of their families.

Enablement and Empowerment are cornerstones of an effective and cost efficient health and social care system, but when professionals fight to keep their jobs and control of their piece of the cake, costly disempowerment will continue to be the order of the day and so any new money will simply be swallowed up by empire building. This means that unless Labour is willing to replace the engine of the new “NH&SCS”, as opposed to simply giving it a new spray job, it will be business as usual in this new game of musical chairs.

I fear Labour’s plans are going to potentially destroy social care in terms of personalisation and independent living, as its bigger brother, Health, takes centre stage making all the demands. Unfortunately, it is a bit late for this election to go back to the drawing board to design a better policy!

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  1. duncanenright says:

    This is a really interesting article, thanks very much Simon. Where do you think this leaves Valuing People? In our region it seems the massive cuts to social care budgets, not the NHS reorg, have been the biggest problem, but you are right that we might be storing up trouble if we don’t stop a health model being applied to social care. I am also interested in the lives of people with profound and multiple disabilities, in particular, so I am very worried about the emergence on the far left and among Green Party people of arguments to close special schools and dilute specialist provision. But that doesn’t mean I am against integration where possible. I also feel that there is a big danger in allowing a wedge to be driven between “carers” (families) and people with disabilities – it isn’t inevitable surely?

    Can you expand on what you think Labour can do to be clearer about ambitions for people with disabilities, in the context of integrated health and social care provision. Should we be taking disabilities off this agenda?

    1. I think the wedge between carers and disabled people already exist but it is ignored. I believe in reclaiming families as families, recognising the interdependent relationships, and the role of social care is to keep families functioning as oppose to supporting unhealthy carer/user relationships. The Care Act will make the relationship worse.

      I think Labour needs to remind itself that the NHS was set up to have an healthly workforce as the country’s economic army. The link between health and employment needs to be reconnected, as well as social wellbeing, and therefore disabled people’s place in society, as people who require support to work or seek work in its widest context can be seen.

      Also, NHS must better support long-term illness and impairment management, to move away from a reckless behaviour to sick to cure to well to reckless behaviour cycle of health services.

  2. The first thing to address is whether health needs are being are based on need or budgetary requirements.

    Nye Bevan’s NHS was based on needs and it was the responsibility of politicians to meet that need; from this perspective as someone who was born a month after the war ended, I saw the growth of the welfare state expand in front of me and became the envy of the world.

    Since the seventies politicians of all colours have moved from being active participants in the provision of public services, into managers of budgets and delivery has been engineered to be provided by ever more privatisation.

    Thatcher promised that in closing down geriatric hospitals, and mental institutions that community care was a much better way to provide that care. In truth people have been dumped on the community and public assets sold of to developers.

    When a system is based of the needs of people, it is those individual needs that drive the service, the problem comes when that is restricted by budgets. The whole Neo-Liberal and monetarist vision talked about sound money in relation to public expenditure, thereby introducing budgetary constraints on public provision.

    This has meant that as institutions have closed down both the
    emphasis on provision and delivery have been reduced, stealthily this process was meant to force those with the ability to pay to find private provision, until today where that private provision is either not available or too expensive for ordinary people.

    We here in 38 degrees Gloucestershire, have researched how many hospitals and geriatric hospitals have closed since the seventies, and that process has accelerated since the 1980s. In total 20 hospitals have closed down leaving massively reduced capacity for those seeking mental treatment and geriatric care.

    When Hospitals refer to bed blocking as a problem, and here in Gloucester that has become headline national news, no mention is ever made of the reduced capacity by wholesale sell offs, specifically when they are keen to point to the demographic problems of people living longer.

    It is the Neo-Liberal agenda that people need to address, not how we meet the needs of people, Budgets and talk of deficits are the Neo-Liberal instruments that are used to asset strip Britain and transfer wealth upwards.

    The one deficit nobody ever refers to is our trade deficit:

    “Annually, the total trade deficit widened to £ 34.8 billion in 2014. This was the largest deficit since 2010 when the deficit stood at £ 37.1 billion. Both exports and imports fell in 2014 when compared with 2013, however, exports fell more significantly. The widening of the deficit is mainly attributed to trade in goods as exports of goods decreased by £ 14.6 billion from the previous year and imports of goods decreased by £ 7.3 billion; this was the first annual fall in imports since 2009. In terms of commodities, trade in fuels saw the biggest year on year decrease; exports of fuels fell by £6.4 billion and imports of fuels fell by £ 9.8 billion.”

    Full report here: http://www.tradingeconomics.com/united-kingdom/balance-of-trade

    The question no-none asks is how do we pay for these deficits, that happen month in month out?

    I have provided links before that show how the Banks create money out of thin air, and that we have infinite supplies of money for our public services and can be created without limit.

    The proof was even debated in the house of commons:


    We have all the money we need to support the needs of ordinary people, so why are the politicians lying to us, and who do they really serve is the question, everything else falls into place after that.

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