The cost of life and freedom

I was going to blog about Winterbourne View. As I start writing this, it’s 7 years since the programme was broadcast and it seems like more. I’d probably have gone on about how Transforming Care isn’t delivering anything like what it promised and how trying to change a system that costs £1.2 billion a year with £30 million spread over 3 years is like trying to turn around a super-tanker with a rowing boat – an exercise in futility. The problem is that most people don’t care and those that do already know that Transforming Care isn’t delivering. I guess the question is, in the context of that failure and in the dark half light that has followed the publication of the Learning Disability Mortality Review where do we, the people who want things to be different, go next? Is it time to do what Neil Crowther has suggested and to change the way in which we talk about learning disability – focusing more on solutions rather than personal stories of struggle – or should we agree with those like John Lish who argue that Transforming Care needs to be given more time to deliver and that it is too early to write it off. The problem is that people with learning disabilities aren’t locked up because of the way in which we campaign to get them home and nor are they dying so many years younger than their peers because government policy hasn’t been given time to bed in, it’s about politics, economics and the cost of life and freedom.

In a recent report Securing the Future published by The Health Foundation and the IFS it was shown that:

“over the last eight years health spending has grown more slowly than in any comparable period since the NHS was founded.”

That:

“Across the UK as a whole, public spending on adult social care fell by nearly 10% between 2009–10 and 2016–17”

And that:

The burden of disease is also increasing. The number of people living with a single chronic condition has grown by 4% a year while the number living with multiple chronic conditions grew by 8% a year between 2003−04 and 2015−16. Looking forward, more of the UK’s population will be living with a chronic disease and very many with multiple conditions. This is because while life expectancy has been increasing, healthy life expectancy has not kept pace and the period of people’s lives spent in poor health has increased; particularly for the poorest. As a result, without major progress on the vision set out in the Five Year Forward View, over the next 15 years spending in acute hospitals to treat people with chronic disease is expected to more than double.

All of this whilst the government remains committed to maintaining the country’s position as a relatively low tax economy. A key component of that low tax commitment has been the drive to reduce expenditure and improve productivity in areas where government spending is high. This has meant cuts to social care and welfare spending and minimal growth in health spending despite rapidly increasing demand.

The combination of increased pressures on budgets, a political commitment to a low tax economy and a commitment to increased private sector involvement in the delivery of NHS services has created an political and economic milieu that makes it almost impossible to deliver a significant transformation in the lives of people with learning disabilities. How can a government tell a Doctor that they need to spend more time on their appointments with people with learning disabilities when they are also telling them to see more people for less money. How can they tell a local authority that it has to invest more on intensive support in the community when they are also telling them that they have to cut spending by tens of millions and the contradictions don’t end there.

Within health the drive to improve productivity has gone hand in hand with a growth in the role that for profit private sector providers have come to play in the provision of services.

Spending on private sector mental health service providers (mainly in-patient care) increased by 12 per cent (£126 million) between 2010/11 and 2012/13, while spending on mental health services provided by NHS bodies fell by 2.5 per cent in real terms (£17 million) over the same period.  

https://www.kingsfund.org.uk/projects/verdict/nhs-being-privatised

The rationale behind increasing the role of private sector is simple, excess capacity in the private sector doesn’t have to be paid for (at least not directly), whereas excess capacity in the public sector does. It is theoretically far easier to make the money follow the person as they move from inpatient setting back into the community. The theory is fine but as we argued in “A Trade in People” the decisions of the private sector have to be driven by the needs of their businesses. Directors are required to act in the interests of their shareholders and decisions that are made in the interests of a business aren’t always easy to reconcile with the needs of the people who use a service.

Nevertheless, the government has attempted to put more funding into CCGs as part of Transforming Care. According to a Freedom of Information request that I made last year NHS England is expecting to spend £66 million less on specialist commissioned beds and it is envisaged that the funds released will then be made available to CCGs to support their spending on community support and infrastructure. If NHS England meets those targets, then most but not all Transforming Care Partnerships can expect to see a rise in funding made available to their CCGs to spend on community support.

Whilst the NHS England data seems to be good news it is important to remember that this funding only becomes available to CCGs after specialist commissioned beds have been closed and the commissioning authority is no longer paying for the previously commissioned service. So, the bulk of the work that is required to get people out of hospital is technically unfunded. In some cases, this may not matter but for a great many people an enormous amount of work needs to take place for the transition from inpatient hospital to community to take place. Aspects of this were raised in an excellent report produced by  VODG (Voluntary Organisations Disability Group) – Transforming Care the Challenges and the Solutions which made the following recommendations.

These give some insight into the complexity of the work that is involved in the process of getting people out of this kind of provision. If you add to that the clinical work that needs to be done in supporting the individual and the support that should be being provided to families and friends (and which isn’t), it is clear that the missing piece of the government’s Transforming Care master plan has been the lack of sufficient up-front investment in the work that needs to be done, to get people home and to keep them there. The £30 million of transformational funding is a fraction of what the 48 Transforming Care Partnerships needed to get this work done. Many didn’t receive any funding at all and having read most of the original plans, I’m pretty sure that none received all of the funding that they bid for as part of those plans.

Most of the original Transforming Care Plans were written in good faith and with the horror of Winterbourne View very much in mind. Most involved extensive consultation with local communities and a significant amount of work. The decision not to properly fund those plans was political and economic just as the decision not to properly implement the recommendations of CIPOLD was political and economic – there is a cost to the lives and freedoms of learning disabled people that central government simply isn’t prepared to pay.  So, when NHSE and the Department of Health and Social Care start blaming everybody else for the lack of progress on Transforming Care and for the high mortality rates for learning disabled people remember that if they had wanted these targets to be delivered – they’d have funded the work.

I guess I did end up blogging about Winterbourne View after all.

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