It was a quiet morning in accident and emergency. My daughter doesn't really cry - she whimpers - and that's what you could hear as the paediatric consultant examined the long bloodied gash between her nose and upper lip. It was too jagged to stitch and would have to be glued back together. There was some concern as to whether the glue would hold such a wide, uneven rip. The consultant confirmed our fears; it would leave a scar.
It hadn't been a big accident. That morning, before leaving for school, my nine-year-old had fallen off the toilet. She has a disability, a form of cerebral palsy that means she has little sense of balance. To use a toilet unaided, she needs some support. A couple of bars along the side and a toilet seat insert, to make the hole smaller, will do. Such simple equipment should be provided by social services or the local community health trust. When my daughter tumbled from the toilet, we had been waiting for a toilet seat insert for over three years.
The saga of the toilet seat began when she was just six years old. In her report, her occupational therapist from the community health south London NHS Trust wrote, "Needs intermediate size WC insert", and referred us to the occupational therapist at Southwark social services.
I didn't realise it then, but this was the first blow in a well-rehearsed battle between social services and local health trusts. For, despite the government's avowed commitment to "joined-up thinking" and a "multi-agency approach", which is intended to encourage health and social services to combine resources and conduct joint assessments; and despite the fact that the Health and Social Care Act gives the two statutory bodies the opportunity to pool budgets for the first time, the question of which of them pays for and provides an item even as small as a toilet seat insert is a matter of much contention. Exactly what falls within each authority's responsibility is unclear, and that blurred boundary is often exploited. Parents of children with disabilities soon discover that a significant part of the time and cost allocated to their child by either health or social services is spent trying to shuffle those responsibilities off to the other. That, combined with two statutory authorities bogged down in bureaucratic incompetence, is why my daughter will be permanently scarred.
After the initial referral by the NHS trust, we heard nothing for 18 months. Then, one morning, a man from Southwark social services called me at home; I happened to be off work that morning. As if we had just contacted them yesterday, he said he was an occupational therapist, and asked if he could visit us that afternoon - at two o'clock, say - to assess my daughter's toileting needs. I pointed out that we had heard nothing for over a year, and that we were being given two hours' notice of an appointment. I asked him to make proper arrangements to come and see us. It was a mistake. We didn't hear from him again for several months.
Then the first of a number of letters arrived which were almost amusing, in a Monty Python-meets-the-Kremlin sort of way. "It is now over a year since your child was provided with equipment," wrote a different occupational therapist at Southwark social services. "As we have not heard from you recently, we are assuming that the equipment is still meeting your child's needs... In this circumstance, I will close your daughter's case to the Occupational Therapy Service." We had not received a single piece of equipment. Our child's needs had never been met.
I called the woman who signed the letter, informing her that my daughter's case was far from closed. She gave me some good news: if you are an owner-occupier and have a child with a disability, you are allowed a one-off £500 grant towards adaptations to your home. Five hundred pounds doesn't go far; a stairlift costs nearly £3,000. But it would at least get us a shower seat, so that my daughter could take a shower alone, bars for the toilet, and, at last, a toilet seat insert. The three items would add up to around the total amount.
But even this proved too good to be true. The occupational therapist phoned a week later to let me know that she had made a mistake. Southwark would also charge for fitting the items, and as the fitting was charged at a commercial rate, the shower seat alone, including installation costs, would eat up almost all the £500 allowance.
There would be no money left for toilet bars. We offered to fit the shower seat and bars ourselves; it couldn't be that difficult. That, she said, was not allowed. For although the adaptations would be fitted in our own home, they would always belong to Southwark council because Southwark had purchased them; therefore, they had to fit them.
So it was that we got a shower seat and no toilet bars. And, we were reminded, it was the job of the health trust, not social services, to provide the toilet seat insert. I contacted yet another occupational therapist at Community Health South London, who said it was the responsibility of Southwark social services. Our daughter still couldn't go to the toilet by herself.
By now she was eight years old, and wanted to be independent. "Can't you just give me a bit of privacy?" she would moan when I accompanied her. I began to leave her by herself on the toilet, wobbling around. The toilet seat insert request was back with social services, and I was convinced that within a few weeks, a packet containing it would arrive.
It was during this time of brief hope that I had a very surreal experience. I ended up sharing a platform with Alan Milburn, the secretary of state for health. He was the politician making promises. I was the NHS user making complaints. Milburn talked about his blueprint for the new NHS, establishing a core set of standards, the national service framework for children and, of course, a "multi-agency approach" - all grand plans. I talked about my daughter's unmet need for a toilet seat insert. "It all sounds good," I said, "but from the ground it looks very different." It was more than two years since the first request, and they were still battling over who should provide our toilet seat insert.
My family lives in the London Borough of Southwark. Things don't get much worse than around here; we hover around the bottom of the league tables for just about everything. If you're a child with a disability in this borough, your family has to fight for every half-hour of help. There's always a vacancy or two among the council's dozen physio and occupational therapists; half of the posts are now filled by locums, who are often employed from abroad on monthly contracts.
The turnover is rapid. My daughter has had more than 20 different therapists in eight years. When she was first diagnosed with cerebral palsy at just one year old, we were given a written guarantee that she will receive fortnightly physiotherapy. The promise was initially kept. But while government health initiatives are prolific, at a local level, therapy services have collapsed. Now several months often pass between my daughter's physio therapy sessions. She is lucky to see an OT twice a year. In a recent Southwark Therapy Review, it was estimated that, even if all the posts were filled, it would take a further 15 therapists just to meet the demand, 50% more than are currently funded.
Caring for children with disabilities is the unglamorous end of the NHS. There's an acute shortage of therapists nationwide, mainly due to poor pay and conditions, but also because who wouldn't prefer to be a physiotherapist to a Premier league footballer than a bunch of crippled kids in a deprived inner-London borough? Funding for OT posts, providing long-term, often lifelong low-key care, must also compete with resources for short and sweet acute services. According to the National Association of Paediatric Occupational Therapists (Napot), it is common for a child to face a two-year wait before seeing an OT. There is little will to invest in conditions that can be alleviated but not cured. While reduc ing deaths due to cancer or coronary heart disease wins political points, there's no gain in enabling a few more children to go for a pee independently. Even Napot admits: "It's very boring. It doesn't make the headlines. But it can make huge differences. And these differences could be crucial." But I know there will never be targets for toilet seats.
With hindsight, I now wonder why I didn't just go straight out and buy an insert myself. Firstly, because each time someone confidently told me that we'd have one within the next few weeks, I believed them. I also presumed that it must be an item of some considerable expense. Why else the three-year long argument over paying for it? Finally, I didn't know where such a specialist piece of equipment could be purchased. I asked yet another new occupational therapist if she could recommend a supplier; she gave me a name, but by the time I contacted them, they didn't sell them any more.
Meanwhile, I estimate that health and social services have spent over £2000 not providing my daughter with a toilet seat. The number of professional hours wasted in visits, phone calls and letters that went nowhere must be more than one hundred. The cost of the paediatric consultant in accident and emergency alone must have been several hundreds of pounds.
A couple of months ago, a manager for therapies at the health trust clinic that my daughter attends called to say that, given the delay in getting us a toilet seat insert, they would, as a courtesy, buy us one even though it was not their responsibility to do so. She was referring the matter back to an occupational therapist. It was weeks before I heard from her. Nothing arrived.
My daughter is embarrassed about what happened. If anyone asks how she got her scar, she simply says: "I fell." She doesn't want people to know that she toppled off the toilet. That is why, out of respect for her dignity, I have written this article under a pseudonym.
Last week, I decided, far too late, to stop waiting. I found a toilet seat insert on the internet which looked as if it might work, and ordered it. It came yesterday. It cost £12.49.
This week, before leaving for school, my daughter used the toilet by herself for the first time.
