When love is not enough: The joy and hardship in caring for a disabled child - 9 November 2009

Throughout his childhood, Don and Mavourneen Moore cared devotedly for their 17 year old son, Cameron.  But one evening at their comfortable surburban home in Essex, they suddenly reached breaking point.  Cameron has Asperger's syndrome and in the past few months the gentle eccentricities of his youth have given way to increasingly violent and abusive behaviour.


'He banged this door several time,' his still traumatised mother told me, 'Then he attacked me; he got me round the throat and then he got me round the wrist.'  She showed me her still badly swollen arm, as her husband continued the story.

'He started hitting himself, gave himself a bruise on his chin, started a nose bleed as well.  And that led me to doing something I've never done, and never believed in, which is to raise my hand to him.  And that makes me feel such a failure because I've crossed that line - it's a terrible thing.  We've never hit Cameron'.


On a recent visit to London, intended as a family treat but ruined by Cameron's behaviour on the train, Mavourneen admitted to me that as she stood on the platform, she had looked down at the tracks and thought how easy it would be to push Cameron - a young man heartbreakingly aware of his own problems - and jump after him herself.


The Moores, however, are certainly not the only parents caring for a disabled child to reach breaking point.  As I sat on a Devon beach, with 31 year old Julie Evett and the youngest of her three children, Rose, lying - apparently contentedly - in her pushchair, it must have seemed an almost idyllic family scene.  But it wasn't, as Julie's profound despair made all too clear.


Not only is her three year old daughter blind, she has severe epilepsy, her brain is not developing properly and she suffers from hypotonia, a floppy muscle condition.  Rose will never be able to walk, talk or feed herself.  She can also cry and scream not just for hours but days, even weeks at a time.


Her condition is, as yet, undiagnosed, but looking after her is physically and emotionally draining, round-the-clock job that one day drove Julie to consider what, for a mother, is supposed to be the unthinkable.


'I left the two older girls with a neighbour and Rose with her dad.  I got in the car and I spent the entire day driving and crying, driving and crying.  I wanted to scream out load:  "I want to take my own life."  I just wanted to be out of this pain.'


However, in her distress and exhaused confusion, Julie came to the dreadful conclusion that killing herself and Rose was not going to be enough.  'My head was playing around with me so much that I remember thinking:  "I'm going to have to kill all three of my girls because I couldn't bear to leave the older two behind."


Thankfully, Julie didn't even begin to go through with this awful plan; just as the Moores' problems with their son went no further than a single, and instantly regretted, raised hand and a momentary dark thought.  That's how strong and enduring the extraordinary love between a parent and even a severely disabled child can be.


And that's why many of these parents often end up looking after these children 24 hours a day, seven days a week.  They live in an almost permanent state of exhaustion, despairing of things ever getting better, frustrated by the massive battles they have to fight to get even the most minor help.


Not surprisingly, research from the charity Mencap reveals that eight out of ten carers get so worn out that they reach breaking point and are unable to care for their child.  A mercifully small number of them even end up killing their own child.


Two years ago, Fiona Pilkington, driven to despair by ten years of bullying and abuse from local youths, bundled her seriously disabled, 18 year old daughter, Francesca, into her care, drove to a Leicestershire layby and set fire to the vehicle.  Both mother and daughter died in the resulting fireball.


A month later, Joanne Hill drowned her four year old daughter, Naomi, who suffered from cerebral palsy, in the bath.  Hill was eventually sentenced to life imprisonment, having been found guilty of murder rather than manslaughter.


An article I wrote for the Daily Mail in September last year in response to that tragic case led to me being asked to make a documentary about parents who have children requiring virtually 24-hour care and the tremendous pressures these families face.


I know something of what they go through.  Our 14 year old daughter, Domenica, has Down's syndrome and, although she is adored by our entire family, caring for her, at times, has taken me close to breaking point.  That's why I've spent the past ten years campaigning not just for the rights of disabled children, but for their families, too.


I know that awful feeling of being so tired you lose all reason.  I remember one particular night with Domenica when I'd done five nights in a row - this was the sixth - and she just couldn't sleep.  She was just raging and raging and I remember picking her up and saying to myself 'I can't take this any more' and I shook her - before something snapped in my head and I put her back in her bed.  In that moment, I saw how easy it is to lose control. 


But having spent the past ten months visiting families facing far worse problems, families who are barely coping and living right on the edge, I know I'm one of the lucky ones.


I have a deeply supportive husband and family, I have money and, for all too short a time, I had the support of my good friend, Diana, Princess of Wales, who volunteered to be Domenica's Godmother soon after she was born, saying simply:  'You're going to need all the help you can get.'


Diana was absolutely right; help is exactly what the parents of disabled children need and I've been appalled to discover in making this documentary how difficult it so often is for them to get it.  At times, it was hard to believe I was in Britain in the 21st century.


Our standards of care are dismal, our understanding of what these families need is non-existent and the endless bureaucratic process required to access vital services is mind-boggling.


Every family I visited had drawers bulging with files; letters from the director of this or the manager of that - all of them passing the buck; not one of them prepared to take responsibility and actually get something done.


Take Asher Nardone, a Dorset mother of two whose eldest son, 12 year old Callum, has severe cerebral palsy which has left him unable to walk, dress or feed himself and with a mental age of two.  Given his condition, it is perhaps not surprising that he is also doubly incontinent, increasing the already huge strain on his exhausted mother.


So, what do local social services do?  They arbitrarily decide that Callum can have no more than three free napies per 24 hour day.


Asher, of course, protested - Callum can get through twice that number a day - but to get any more, social sevices wanted her to measure both 'inflow and outflow'; in other words, which food and drink went into Callum and which waste products came out of him.


What were these people thinking?  Given that the same social services department had previously advised Asher to ' hose him down in the garden' when she applied for a much-need downstairs bathroom, I'm not sure they were thinking at all.  What the parents of severely disabled children need is compassion and care, not bureaucratic intransigence.


Time and again, I came across evidence of a system that simply isn't working, that too often fails to get money and help to those who so desperately need it.  As one exhausted mother put it:  'They should try walking in our shoes for two weeks. Perhaps then they will begin to understand.'


The Moores, for example, have faced an endless battle to secure some sort of life both for their son, Cameron, and for themselves.


When his behaviour became more violent and they were in urgent need of a psychiatrist, they discovered that, because he was 17, he was no too old to have a child psychiatrist, but too young to have an adult one.  All the grand talk of 'transitional pathways' between child and adult services turned out to be meaningless nonsense.


They ended up spending £2,000 of their savings on securing specialist help, an option that simply won't be open to may parents facing a similar situation.


How have we come to this?  Why do we so consistently let these families down who need our help the most?


David Cameron, the Conservative leader, understands the problem from a very personal perspective.  When I spoke to him, he and his wife, Samantha, were still grieving for their six year old son, Ivan, who battled cerebral palsy and other complications throughout his short life.


'To start with, we didn't have much help,' he told me, 'and we were just struggling rhough and getting close to collapse.  Then we got a brilliant social worker and lots of help - and, of course, we were able to get extra help - but if we had none of those things, none of that help .... it would have been desperate.  A child like Ivan is 24 hour care.'


What he would like to see introduced here is a passport scheme, whereby a disabled child is given a single assessment that opens the door for everything that child needs - respite care, specialist healthcare, benefits, schooling, etc - without parents having to answer the same questions over and over again.


It seems a sensible and progressive idea and surely at a time when we have a Prime Minister with a disabled son (Gordon Brown's son, Fraser, has cystic fibrosis) and an Opposition leader who has been through the most terrible experiences, we ought to be able to  make real progress in how we care for the disabled and their families.  We have to start looking after these people.


What we have to avoid is falling into the old trap of brave words failing to be matched by deeds or frontline funds.  We've heard a lot from politicians in recent years about getting more help to carers - and quite rightly so - but of the £50 million allocated to carers this year, only £10million has reached the families who need it. The rest seems to have disappeared into the murky finances of our Primary Care Trusts.


That's got to stop.  There has to be less money spent on administration and more on delivery; there needs to be less assessing and more providing. And yet the gap between the rhetoric that spews from Whitehall in the form of endless initiatives - such as Better Lives, Better Care and Aiming High for Disabled Chilldren - and the reality on the frontline is wider than ever.


Fraced with the exhausting round-the-clock care that the parents of disabled children have to provide, I find it all too easy to sympthasise with those parents who do reach breaking point, and even with the tiny number who end up taking their child's life. They are not evil; they just didn't get the help they needed.


But what both heartens and astonishes me is the ability of the vast majority of parents of disabled children to soldier on, to keep on battling the bureaucracy and fighting for a better future - almost any future - for their disabled child.  And they do so because they love them as only a parent can.


As David Cameron said to me:  'You learn things about bringing up a disabled child that you never expected.  You learn that there are all sorts of ways of loving someone who can't tell you that they love you.'


When a Mother's Love is Not Enough will be shown on BBC1 at 10.45pm tomorrow.