Wednesday, 12 December 2012

We Must Do More For Victims Of Spinal Cord Injuries

Earlier this year, at the end of June, I attended the AGM of the All Party Parliamentary Group on Spinal Cord Injury. It was held at Portcullis House in the House of Lords, and I attended as a guest, having been invited by the Motor Accident Solicitors' Society. I found the experience to be poignant and inspirational in equal measure, and had planned, at the end of November, to attend a subsequent meeting of the Group. I was unable to do so owing to care issues facing my father, but my colleague, Allison O'Reilly, went in my stead.

Allison returned from the meeting feeling every bit as moved as I was. It's fair to say that she was angry, too. Here's why.

"The statistics read out by Dr Brett Smith of Loughborough University were frightening," Allison told me. "Dr Smith spoke about Spinal Cord Injured (SCI) people and their experience of living in care homes. He revealed that some 60% of SCI people living in care homes have considered suicide. One of them succeeded in turning off his ventilator, only to be saved by staff. When they came to investigate what had happened, he was too scared to reveal what he'd done. Dr Smith's evidence was of SCI victims up and down the country feeling as if they'd been condemned to life sentences, so poorly cared for were they in care homes."

I recall hearing similarly disconcerting testimony at June's AGM. I discovered a lack of clarity in determining who should pay for the treatment of SCI people, with some parts of the country passing the buck to NHS Primary Care Trusts, others to local social services. In turn, the divergence in practice created 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.

Six months on, and Allison was unable to tell me that things had improved. The question of who pays for the care of SCI victims is as much a matter for debate as ever. This, and the many tragic tales aired at the meeting, accounted for Allison's anger. However, just as I was inspired by the story of John Burns last summer, so too did Allison come away feeling profoundly moved by an individual SCI victim.

Mr Burns is a tetraplegic who was injured in a watersports accident. His courage was palpable when he spoke at the AGM. Allison heard the testimony of Roger Hearn, who has also suffered a severe spinal cord injury. Allison encountered a similarly indomitable spirit in   Mr Hearn: "Roger is a lifelong cricket fan who was injured in a road traffic accident while in India on a cricket tour. He is now in a care home. It was heart-rending to hear of his experiences when he first came to the home - he had to tell the staff what to do but then, no sooner had they got to know him and understand his needs, they would move on. Often English wasn't their first language and communication was difficult. He has suffered huge indignity as a human being."

Allison went on to tell me that Mr Hearn credits his wife with keeping him positive - and yet, in his care home, it is not possible for the couple to sleep in the same bed. His wife therefore sleeps on the floor, to be close to her husband. No wonder, as Mr Hearn also told ITV, "survival is often just the name of the game".

Like me, then, Allison was moved and inspired by the tragic story of an individual SCI victim, but like me she also believes that, as a society, we must do more. It is simply unacceptable in a civilised democracy such as Britain that SCI victims have virtually no option but to live in care homes. They are as entitled to a decent quality of life as everyone else, and should be able to live in their own family homes - suitably modified, and with appropriate care provided - post-injury.

As Allison also put it: "I came away feeling so moved by Roger's story, and yet, there in the august corridors of the House of Lords, I could sense political defeatism. Will things change for SCI victims? I hope so - but only if we can make their plight better known."