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”.
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.