The WOW factor makes for a good early Christmas present, but we must keep up the fight against the erosion of the welfare state

A year and a half ago I wrote about John Burns, a courageous man who, having suffered a terrible water sports accident, had been paralysed from the neck down. I was privileged to hear Mr Burns speak of his experience of spinal cord injury (SCI) at the AGM of the All Party Parliamentary Group on SCI in June, 2012.

The august surroundings (the AGM was held at Portcullis House in the House of Lords) only made Mr Burns' tale all the more poignant. After his accident, Mr Burns was forced, through lack of any alternative, to live in institutional care. Deprived of his family life, missing anniversary celebrations and seeing his sons grow up, he regarded this as a prison sentence.

We must oppose the war on welfare

Listening to Mr Burns was moving and inspirational in equal measure. On the one hand, everyone present admired his courage; on the other, we couldn't help but feel angry at the treatment of those with disability in this country. Time and again those who suffer an SCI are packed off into homes and forced either to use their savings or sell family assets to pay for their treatment. They're forced to live alone, away from their families and friends - despite having worked hard and paid their taxes, and despite Britain's longstanding and much admired commitment to welfare.

In fact, the present government has been engaged in a war on welfare for some time. If it had its way, the sick and those with disability would be even worse off, thanks to cuts proposed by the Department for Work and Pensions. Our cherished welfare state is under threat as never before.

But the year could be ending on a positive note - thanks to the WOW factor.

#WOWdebate2014 to stop the War on Welfare

WOW stands for the War on Welfare campaign. Its campaigners ask the government to carry out a Cumulative Impact Assessment to look at the overall effect of cuts to sick and disabled people, as well and their families and carers. They also ask that MPs are given a free vote on the repeal of the Welfare Reform Act. Other laudable campaign aims are to end the Work Capability Assessment, and the launch of an independent inquiry into issues including charges for care homes, ATOS, and the closure of Remploy factories.

Success for WOW

WOW launched an e-petition, supported and submitted by actress and award-winning comedian Francesca Martinez. In a piece of great news just before Christmas, the petition secured its target of 100,000 signatures with 12 days to spare before it closed. Celebrities including Stephen Fry, Russell Brand and Yoko Ono lent their support and helped garner the momentum for enough signatures to compel a parliamentary debate.

For Francesca Martinez, the key issue is clear cut. As she puts it: "The Government are using this recession as a cover for implementing cuts and eroding vital services that people fought long and hard for, and we need to get together and protect these crucial support networks."

I agree whole-heartedly. The government's hostility to the sick and disabled is a disgrace. Moreover, it's a human rights issue. We should all continue to support WOW - for example by writing to our local MPs. We must do our best to preserve what's good about our society - not stand by and let it be taken away.

Every eight hours someone is told they will never walk again

It's a remarkable and dismaying statistic: every eight hours, somebody is left paralysed by a spinal cord injury and told they will never walk again.

The reality of a spinal cord injury (SCI) is all the more terrifying given the absence of adequate healthcare for those suffering. This is something that I've written about in the past, and it's something that I intend to continue to publicise. Please join me, then, in supporting Spinal Cord Injuries Day, which takes place today, Friday 17 May.

Raising awareness

Spinal Cord Injuries Day aims to raise public awareness of the grave difficulties faced by many people affected by spinal injuries. An excellent campaign is presently being managed by www.EveryEightHours.com to do just this, and I wholeheartedly embrace it.

Specifically, the campaign aims to ensure further and better medical research into more reliable treatments, to develop improved medical care and support for those affected by an SCI, and to provide guidance and support for those affected by spinal injuries so that they can lead independent lives.

My work has brought me into contact with many people with SCI. Often the diagnosis of paraplegia or tetraplegia comes after a sudden, traumatic and wholly unforeseen accident. Managing the injury takes time, money and a colossal amount of care - and has a huge impact not just on the injured person but on their family as well.

Research carried out by Loughborough University, on behalf of spinal injury support charity Aspire, reveals the harsh truth about the state of care for those affected by spinal injuries. Last year, for example, a fifth of those affected were discharged from hospital and transferred to a care home, irrespective of their age. Why? Because local housing cannot suitably accommodate the injured person's changed lifestyle and needs.

Health care is not good enough

Moreover, these care homes are often understaffed and, frankly, horrible places for those adjusting to their new lives. Loughborough University's research incorporated 20 interviews with residents from care homes across the UK, most of which suggested care workers don't have the necessary experience or know-how to look after people who have suffered such traumatic injuries.

From one interview it transpired that staff had attempted to move a person with spinal injuries using a 'slideboard', only to drop the patient on the floor. The result, adding insult to injury, was that the patient sustained a broken arm. On a separate occasion, that same person was provided the wrong medication - a potentially fatal mistake.

Indeed, as I wrote at the end of last year, my colleague Allison O'Reilly reported in the shocking truth of the story of Roger Hearn, who sustained life-changing damage to his spine in a road traffic accident while on a cricket tour in India. Mr Hearn spoke at a hearing held by the All Party Parliamentary Group on Spinal Cord Injury, and also gave an interview to ITV about his experience. He revealed that care home rules mean that his wife is prohibited from sleeping in the same bed as her husband. Her commitment to her husband's care is inspirational - Mrs Hearn sleeps on the floor next to his bed - but nevertheless Mr Hearn echoes the feelings of many with SCI when he says: "Survival is often just the name of the game."

Advances in technology are beginning to make a difference to those affected by spinal injuries, and it is to be hoped that one day science will provide real solutions. But for now, there is no quick fix. Those with SCI need help; their families need help; those working in this sector, to care for them and find solutions, need help too.

Please, therefore, share the www.EveryEightHours.com website through social media and get in touch with the spinal cord injury charities involved in the campaign.

We must do our best to make a difference.

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."

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.