Wednesday, 27 June 2012

SCI People Deserve Better

Yesterday I found myself in the House of Lords. Specifically, I was in the Grimond Room at Portcullis House for the AGM of the All Party Parliamentary Group on Spinal Cord Injury. I attended as a guest, having been invited by the Motor Accident Solicitors’ Society.

I found the experience very moving – and not just because of the impressive surrounds of the House of Lords. Certainly, being in such a historical place is stirring in its own right, but what I found so poignant was the subject under discussion, and the testimony of Spinal Cord Injured (SCI) people.

The AGM’s purpose was to discuss the issues SCI people face when being assessed for NHS continued healthcare. It was chaired by Ian Lucas, the Labour MP for Wrexham, and among those speaking were Professor Luke Clements of Cardiff Law School, and John Burns, who is a tetraplegic.

Mr Lucas was a fine chair, and Professor Clements an erudite analyst on the legal issues surrounding the provision of continued healthcare to SCI people. But what moved me so much was the story of Mr Burns, whose battle to secure continuing healthcare in his own home was shocking and dismaying in equal measure.
It strikes me as appalling that SCI people have to overcome such barriers when applying for continuing healthcare from their local Primary Care Trusts. Why, in a civilised society such as Britain, is it so difficult for people whose quality of life is so dreadfully curtailed to obtain adequate care?

The leading authority in the area is the Coughlan case, a Court of Appeal decision from 1999. Pamela Coughlan was a disabled woman who was denied fully funded NHS care, having been told that she only needed general rather than specialist nursing. She went to law to argue that the NHS had wrongly passed the buck to social services, and she won. In agreeing with her, the Court of Appeal laid down a test to determine whether the NHS is responsible for funding, as follows: 
  • If the person’s reason for placement in a home was primarily a health need, then the NHS is responsible for funding the whole package;
  • Local social services are only responsible for care which is “merely incidental or ancillary to the provision of the accommodation”.
Regrettably, the Coughlan criteria have not been universally adopted – the Department of Health left it to individual health authorities and Primary Care Trusts to decide each case on its own merits, which led to considerable divergence in practice around the country. In turn, this has led to palpable injustice and a great many misconceptions, not least the widespread beliefs that once a person is not in hospital, they have to pay for their care, and that care outside hospital is social (or personal) care. A related myth is that people in residential or nursing homes automatically have to pay for their care.

Professor Clements debunked these ideas, citing the Coughlan criteria to show that they are not legally correct. That he did so made Mr Burns’ tale all the more moving. This is a man whose circumstances are heart-rending and far from unique. He was forced, through lack of any alternative, to live in institutional care – which understandably he regarded as akin to prison. He missed family life, the benefits of which so many of us take for granted. Mr Burns missed anniversary celebrations and seeing his sons grow up, and all at a time when he was in most need of family support. 

Throughout, he had to try to come to terms with a tragic water sports accident which had left him paralysed and without sensation from the neck down. He brought himself, his wife and his audience to the brink of tears as he so spoke so courageously.

I’m glad I was able to attend yesterday’s AGM. In some ways, it was depressing – the neglect of SCI people and the systemic failure to provide properly for their needs is terrible – and yet I emerged feeling inspired by Mr Burns’ courage. I hope that other people will join me in pressing for a higher standard of care in this area. As a society, we can and must do better.

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