Nearly three years ago, you wrote this very moving and personal manifesto for all of us families who face the additional strains and worries of bringing up a child with a disability or complex health problem. Like most parents in my position, I was very upset for you when you lost your precious Ivan. I still have my son but I live with the very real and terrifying fact that I may well, and probably will, one day wake to the horror your family experienced the day you said goodbye to your boy. I read the newspaper articles and was touched by your dignity and how that little boy's last act had been to splash all of our hidden lives across the world's media and give all our children a voice. I felt so moved that I wrote about it here.
Then, when you led your party into government, I believed your promises that you would look after sick and disabled children and their families. I mean, how you not when you know, and really know the daily struggles we face. You are one of us, aren't you?
You talked about five lessons you learned through having Ivan, lessons that you said would impact your policies. Back then, it made reassuring reading. Last week, I saw your piece posted on Facebook and twitter and, like others, decided to take another look to remind myself what these lessons were because, to be honest, I don't see much evidence of them in the way you and your government are currently behaving.
So maybe, it would help you if I remind you what you said and then let you know how well you are doing.
"The first lesson I learned was the importance of early intervention and help. The day you find out your child has a disability you're not just deeply shocked, worried and upset – you're also incredibly confused.
It feels like you're on the beginning of a journey you never planned to take, without a map or a clue which direction to go in. That's one of the reasons why the next Conservative government is going to increase radically the number of health visitors. I'm not suggesting it's their job to diagnose disabilities, but for decades they've been in the home with parents, spotting warning signs early and offering sound advice. I know how crucial that early help is, which is why we need more of it."
Aha, so this brings us straight into the thorny issue of what you are doing to the NHS. Yes, early help is critical but, a simple google search of the words 'health visitor' and 'cuts' will show anyone that their positions are not safe from the scalpel you are taking to our health services, let alone thinking about creating posts!
It's not just health visitors either is it. My son needs a huge about of input from dieticians to keep him alive. He is the only child in the UK who has a form of autism and has also had a small bowel transplant. Feeding is a huge problem for children on the autistic spectrum and they all need a huge amount of help but, for William, not getting the entire balance right can be critical. He has spent two very long periods in hospital, since his transplant, because a simple 24 hour bug, led to malnutrition and the need for intravenous feed. William's life now depends on a tube feed but we are also trying to teach him how to eat and enjoy real food. This delicate mix balances on the guidance of professionals but do you know how many paediatric dieticians there are in Croydon? How many professionals support the 87 children who are dependent on tube feed and the many thousands with behavioural feeding difficulties, not to mention children with diabetes, cystic fibrosis and others needing their support? How many do you think? No, you are certainly wrong. There is one!!!! Just one, tired, stressed and over worked girl covering jobs that four shared two years ago!
The second lesson was that life for parents of disabled children is complicated enough without having to jump through hundreds of government hoops. After the initial shock of diagnosis you're plunged into a world of bureaucratic pain. Having your child assessed and getting the help you're entitled to means answering the same questions over and over again, being buried under snow drifts of forms, spending hours on hold in the phone queue.
I am determined to make life simpler for parents. One option we're looking at is inspired by something they're doing in Austria. There a crack team of medical experts – doctor, nurse, physio – act as a one-stop-shop to assess families and get them the help they need. That would have been such a help to us and families like us, so we're looking closely at the evidence and considering how we could do something similar here.
And do you think this will happen with services carved up with your NHS 'reforms'? A one-stop-shop is a joke! We trawl hospitals all over the country and are the only people who ever understand the whole picture of our child's care. It's a full time job staying on top of it and here I think I should throw in the fear of cuts on their way to the current DLA and tax credits. Parents of children with complex needs ARE professionals. We are professional nurses, physios, administrators, occupational therapists, speech and language therapists, dieticians.... and for us to wake in the night terrified that the tiny stream of money we get for all this care may be snatched from us next year is not acceptable!
Every expert says that your cuts will make it harder than ever for children with complex needs to get the seamless care they need. At best, life is set to get a whole lot harder and more stressful for us. At worst, out children will die through lack of care and understanding and, no David, that isn't me being over dramatic! That is a real fear that is haunting our dreams and robbing us of our sleep at the moment!
The third lesson is that we've got to make it easier for parents to get the right education for children with disabilities. So many parents get stuck on a merry-go-round of assessments, appeals and tribunals to get a statement of special needs and the extra help their child needs. There's a structural reason for that. The people that decide who gets specialist education – the local education authorities – are also the ones who pay for it. We're seriously looking at how we can resolve that conflict of interest so that parents don't have to enter into such a huge battle for special education.
Something else that many parents have to fight tooth and nail for is a place in special school. Following the gospel of inclusion, the Government has closed dozens of special schools down in the last decade. Inclusion is great for some, but it's often the case that putting a disabled child in a mainstream classroom is a square peg-round-hole situation. So we're going to stop the closure of special schools and give parents more information and greater choice.
Now here, I have to congratulate you. My son goes to a fantastic special needs school and, without them, I'd be on the floor. Now we could have just moved on from here with me patting you on the back, except children have to get to these schools! My son's school is a 3 hour round trip away on public transport and I can't drive for medical reasons. At the moment, I am on tenterhooks waiting to see how big the cuts to the transport service that we know are coming in September will be and whether or not I will even be able to get my son to this wonderful school that you value so much next year.
The fourth lesson is that like all other carers, parents need a break. One of the biggest challenges when your child is severely disabled is finding time to do normal family stuff – playing in the park with your other children, doing the weekly shop, mum and dad going out for a meal.
Respite made a massive difference to my family. Knowing that Ivan was with people who knew him, who would love and look after him gave us a huge wave of relief. Backing respite means backing the voluntary sector, giving parents and carers greater choice over the respite that suits them and looking at all ways of making sure there's a clear entitlement to respite.
We're off to our wonderful hospice tomorrow for a respite weekend but do you know how difficult it is to get these days? Do you know how many children are on waiting lists to access respite? Did you know it's only available if you are 'lucky' enough for your child to be considered 'life limited' and unlikely to survive to 19. If you have a child with a complex condition that saps you of every bit of energy you have left, every single day, but he or she is stable and will reach adulthood then you are on your own. There is no help for you!
In Croydon, day respite has been cut. Sibling support has been cut - help for those hidden children, many of whom go on to have mental health problems in adulthood directly caused by the trauma and lack of attention they experienced as a child. Yes, us parents have that to worry about too and cuts to respite will only increase that fear. Respite not only gives us time to rest but precious time to spend with the siblings too.
The fifth and final lesson I'm going to share is this. The very painful thing about disability – whether your own or your loved one's – is the feeling that the situation is out of your control. When the system that surrounds you is very top-down, very bureaucratic, very inhuman, that can only increase your feelings of helplessness. So a really big difference we can make is to put more power and control right into the hands of parents, carers or those with disabilities – through personal budgets and direct payments. That means that instead of giving a little bit of money from health, from education, from children's services, we say to people: "Here is the total budget for you or your child, you choose how it's broken down." And instead of insisting on separate, bureaucratic bank accounts for that money, it is right people should be paid directly if they choose. This is the support, trust and respect that parents of those with disabilities deserve.
Control?? Do I feel more in control now than I did in 2009? Er, no! I am terrified that there will be insufficient health care to keep my child alive. That GP budget holders will say no to his expensive anti-rejection medication (after all, I have to fight for every script for less expensive drugs), that there will be no beds when he has a set back.... Managing his budget would be wonderful but how many parents have the skills and experience to do that and what will be left of the NHS to spend it on?
You finished your piece with this quote:
"We need to recognise that by staying strong and holding their families together, these parents are doing a great, unsung service to our society."
Yes, we are doing a great job, it is an unsung service and thank you for acknowledging that. Do any of us feel strong though? No, we feel we are on more shaky ground than ever.
I would like to conclude by saying your lessons may have been learned in your private life as a father and I'm sure you are wonderful at that but, as for your policies, they haven't been learned at all.
It would be fantastic if you would take another look and do something to reassure us!