Cameron is not the villain in this tragic case

Published in The Times (January 21st, 2011)

My daughter did not sleep last night. Granted, she is a teenager, so that might not be unusual. But rather than partying, she was having almost constant epileptic fits and starts. For hour upon hour she twisted and turned, her face turning red, her eyes rolling in her head, her breathing slowing down to alarming levels.

The night before she slept a while, then screamed out loud as a massive seizure engulfed her body in horrible contortions. She thrashed around, my wife holding her flailing limbs tight to stop them smashing against the bed guards. Eventually, after ten minutes of torment, she was given emergency medication to bring her out of the seizure and get the rest that she needed so desperately.

This is the unceasing reality of life with a profoundly disabled child, especially one with complex needs. Nights spent hugging your child in the hope that she might sleep, listening anxiously to her breathing and always fearing the worst. Days on the edge, trying to hold your life, your job and your family together in the depths of exhaustion while battling against the bureaucracy that goes with caring in this country. Day after day, week after week, year after year.

So I have nothing but sympathy and support for Riven Vincent, the mother of Celyn, a beautiful six-year-old girl with quadriplegic cerebral palsy and epilepsy, who this week posted a heart-rending message on the internet: “Have asked social services to take dear daughter into care . . . They have refused extra respite. I can’t cope.” She and her partner, who have three other children, have reached the end of the line. They are caught in a terrible lock: like most parents of children with severe disabilities, they adore their child and desperately want her at home where she belongs.

Ms Vincent admits that it would destroy her to send her child to a residential home, just as it hurt us when we sent our daughter to a residential school four days a week. But there is only so long that people can cope without the help they need.

This case is a tragedy. But what is really shocking is that it is not unusual — at some point the parents of so many of the 16,000 children in this country with profound and multiple learning difficulties hit the buffers. The toxic combination of tiredness, depression and fighting for your family becomes too much to bear. Exhaustion seeps into your soul and you no longer pretend you can cope.

And, in most cases, this is avoidable.

Yes, the grind of caring 24 hours a day for a child that could die at any moment is wearying — a child that needs to be watched all the time, that needs help with the most basic tasks in life, such as eating and drinking. Then there is the desire to give your other children as normal a life as possible when the house is filled with carers and doctors and wheelchairs and oxygen tanks, while the nights are punctured by screams and sirens.

Families are found wanting, friends drop away as social events are cancelled at the last minute. If you do go out you are exhausted anyway, or struggle to connect with people given the drama playing out endlessly at home. As Ms Vincent says, caring takes over your life and it is relentless. Little wonder there are such high rates of depression, alcohol abuse and family breakdown among parents of disabled children. And thanks to medical advances, there are growing numbers of these children.

On top of all this comes the fighting with people meant to help. The doctors who don’t return calls, the nurses who treat your child with disdain. You quickly find out that not all health workers are saints — although some most definitely are. Then there are the endless meetings with town hall bureaucrats bickering over budgets, with your child caught in the crossfire. Again, some of these people prove more of a hindrance than a help — and you cling to those that really do care.

So how can the burden be lightened? First, with the use of personalised budgets, whereby parents can control spending without becoming embroiled in all these pointless battles — something that is even more important at a time of spending cuts. And second, with respite care and breaks to enable parents to get a taste of normality — to spend time refreshing relationships, relaxing with friends and enjoying time with their other children. Or simply catching up on sleep.

David Cameron knows all this, of course. As does his wife. They have both told me how they wanted to look after their oldest child Ivan themselves, despite his severe disabilities, but it eventually became too much. They sought help and quickly came to realise the critical importance of respite care. This is why, as David Laws recounted in his book on the forming of the coalition, Mr Cameron stepped in to insist on extra money being spent to provide respite breaks for severely disabled children.

And this is why it is wrong, if understandable given the pressures she is under, for Ms Vincent to lash out at the Prime Minister on this particular issue. As the charity Mencap acknowledges, both this Government and its predecessor increased funds for short breaks and respite care — and from April, councils will be placed under a statutory duty to provide breaks for the first time. This is progress. Not enough, true, but progress all the same.

The coalition is worried about criticism from the disability lobby. So it should be. It deserves to be roundly condemned for the proposed removal of mobility allowance for people in residential care, a highly insensitive and regressive move that I suspect will be rescinded. And the foolish immigration cap will limit the number of carers in this country.

But if there is a villain in this case it appears to be the local authority. South Gloucestershire has received one of the better financial settlements in the country, with a cut in its annual budget this year of a comparatively mild 2.37 per cent — and it has reserves of nearly £30 million. Either it is playing political games or it is incompetent. After all, if this family are broken up and Celyn ends up in residential care, it will cost an additional six-figure sum each year.

After 17 years and a series of skirmishes with local authorities, my family have survived with the help of an army of carers. One of them is with my daughter now as she suffers another seizure. The cost of caring for children such as Celyn and my daughter is astronomical. But the cost of not caring about them and their families is even higher.

Categorised in: Disability, home page, Politics