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."

Hats off to Stewarts Law

The law firm, which has offices in London, Leeds, New York and Delaware, entered six teams in last Saturday’s London triathlon. The teams consisted of partners, associates, trainees and paralegals, as well as clients and their friends.

Photo courtesy of  Julian Chamberlayne

I applaud the firm's commitment to the triathlon not just because exercise is a good thing. What’s better yet is that all involved were raising money for Dan's Fund for Burns, a charity which provides burn survivors in the UK with ongoing support, resources and practical assistance with their recovery. The charity was established by Polly Miller (a former client of Stewarts Law) after her husband Dan, best friend and seven other friends were killed in the 2002 Bali bombing. Polly herself was badly burnt in the attack.

Polly's experience – which revealed that many burn victims receive virtually no support from health care professionals – led her to set up her admirable charity. Much though it does excellent work, the fact that the charity exists cannot but cast a spotlight on the NHS. The glare intensifies when we consider the Draft Care and Support Bill, published last July.

The Bill aims to create a single law for adult care and support, replacing more than a dozen different pieces of legislation. It will provide the legal framework for putting into action some of the main principles of the White Paper, entitled 'Caring for our future: reforming care and support'. So far, so sensible, but a close look reveals that the provisions of the Bill are wanting.

In an earlier blog, I objected to the Bill's idea that people may have to pay for care by selling their homes, an initiative which cannot but have serious consequences for their offspring and which seems to me to amount to a death tax, and may affect large numbers of seriously injured people.

The efforts of firms like Stewarts Law in last Saturday's London triathlon are to be praised for redressing the deficiencies in present social care system, but the Bill needs to tackle these deficiencies head on.  Here's hoping that there will be due consideration by the lawmakers of the plight of people such as one of Stewart's former clients. Having sustained serious burns injuries he became a double amputee, but he was able to cycle his recumbent bike in the triathlon. Well done to Julian Chamberlayne and Paul Paxton, the firm and all involved - and if you'd like to help out, its still not too late to make a donation by visiting: http://www.justgiving.com/StewartsLaw-LondonTriathlon.

The White Paper on Social Care: we mustn’t let it turn into a missed opportunity

Recently I wrote about John Burns, whose battle to secure continuing healthcare in his own home gave me cause for considerable concern. For those who may not have seen my previous piece, Mr Burns suffered a tragic water sports accident which left him paralysed and without sensation from the neck down. But at the very time when he most needed the support and infrastructure of family life, he was forced, through lack of any alternative, to live in institutional care. Understandably, Mr Burns regarded this as akin to prison. He missed anniversary celebrations and seeing his sons grow up, and all the up and downs that make a family so special.

I was fortunate to hear Mr Burns speak at the AGM of the All Party Parliamentary Group on Spinal Cord Injury, held at Portcullis House. He brought his audience to the brink of tears as he so spoke so courageously. I left feeling profoundly moved, and determined to try to raise the profile of people in Mr Burns’ position.

With this in mind I applaud the publication of a white paper on the future of social care, published last week along with a draft social care Bill. As a press release from the Law Society has it, this amounts to “a rare opportunity to unify and modernise existing legislation which must not be wasted.” Law Society President Lucy Scott-Moncrieff  states: “Simplifying and unifying a mass of existing statute is an arduous and complex exercise.  The aim must be to improve the experience of those requiring care.”

The publication of the white paper comes against a backdrop of reduced spending on social care, a society whose citizens are living longer and a need for clarity on how the system will be funded in future. But does it do enough to help seriously injured people?

I will be taking a look at both the white paper and the draft Bill in detail to find out, but one thing strikes me as dubious at the outset. It is envisaged that elderly people in need of care will be able to take out loans on the value of their homes, repayment of which will be deferred until their death. Therefore people will not be forced to sell their homes to obtain care, but is it right that the family inheritance is potentially eradicated in this fashion?

I don’t think it is. I believe that as a society we are guilty of failing to respect those in need of care properly, whether they are the elderly or those unfortunate enough to suffer a serious and debilitating injury. At present, costs are pushed back and forth between local authorities and the NHS – a problem the white paper seeks to deal with by proposing greater integration – but as a starting point surely we should be accepting that society has a duty to meet the costs of care? After all, those who need care have paid their taxes and, in all but a tiny minority of cases, they have contributed to the wellbeing of their communities and the economy of the nation. Why does government, past and present, assume the default position that it is the individual’s responsibility to pay for care?

I will return to this topic in the future but, for now, I am not convinced that those suffering catestrophic injury  would be impressed or relieved by the content of this white paper.  Let’s make sure it doesn’t end up being a missed opportunity.