A mother's crusade

At one stage, says Henrietta Spink, her second profoundly disabled son Freddie learned how to projectile-vomit as a means of gaining attention. "He used it as a weapon. He was on all sorts of medicine to stop it but he worked out how long it took to take effect, so he knew when he'd be able to puke and when he wouldn't."

Freddie was born with only half a diaphragm, usually a fatal condition. As a consequence, his guts were in his chest and his partially developed lungs pushed up into his shoulderblades. For the first few weeks of his life, he was on a life support machine and under general anaesthetic.

Later, after a number of major operations to re-locate his organs, and in almost constant pain, he began to show signs of autism. Now aged 10, his oesophagus has been almost entirely eroded by acid, and the doctors talk about replacing his throat with a part of his stomach.

While Freddie was vomiting and sometimes choking, his older brother Henry was waking up five times a night and suffering up to 35 fits a day.

Henry is still a "medical conundrum", says Henrietta. He was bluntly diagnosed with suspected brain damage at three months by a doctor who plucked a raisin from a packet and waved it in front of his unresponsive eyes. Subsequent brain scans revealed no damage at all.

Locked in a mutinous body, with extremely poor muscle control - he's now 14 and has to wear nappies - no one knows what Henry's thinking or feeling, because no one knows how to connect his brain to the rest of him.

He displays passionate reactions to music but other loud noises frighten and distress him. He laughs and smiles and listens for an hour to The Hobbit but has never spoken a word and needs two adults to help him stand up without a frame and then make stepping motions.

Michael Spink, the boys' father and an art dealer, used to do the night shifts while Henrietta gave up work as an Islamic book restorer and found herself loading the washing machine at home in Battersea six times a day.

"Eventually we just sagged. One disabled child, yes, we could have staggered through but two - and with such complex health issues. Here we were, trying to cope at every hour of the day and night with no help at all from anyone, and literally not one minute on our own.

"Though we loved them passionately it was turning into a nightmare." Several years ago, the Spinks " swallowed their pride" and turned for help to the social services department of their local authority, the London Borough of Wandsworth.

An officer from the council was sent to their modest, book-lined home to carry out what Henrietta now calls "a very insincere and cursory assessment". Despite that impression, within a few weeks she received a phone call offering her eight hours of help with the laundry.

"And that sounded great, really useful. Until I found out they meant eight hours of help a year. Our case was closed after that, and we never heard from them again. It's quite funny in a sense."

So began the Spink family's acrimonious relationship with the London Borough of Wandsworth, and Henrietta's long battle to clarify and ultimately change the often inconsistent - and sometimes plain loony - local government regulations that govern provision of services to the disabled.

She has now become an expert on special-needs schooling and the acres of red tape that confound parents of children who require it. The Spinks have taken Wandsworth to tribunal three times, in attempts to gain access to various crucial therapies that experts agree the boys should have.

But the borough has failed to provide - at a cost of thousands of pounds in legal fees to both the family and the council. The family is still £15,000 in debt. So distressing has the entire experience been, Henrietta once thought seriously of killing herself and her children.

"If it looks like you're middle class, then you're supposed to cope absolutely on your own. Actually, we can't nearly afford all the equipment and care that Henry and Freddie need. At times I was in floods of tears and Michael, who's a mild-mannered man, completely lost it. We felt incredibly vulnerable."

The culmination of Henrietta's campaign comes in November, when she and 21 other Wandsworth families with similarly stressful experiences - backed by Gavin Millar QC - submit a formal complaint to the new Education Secretary Charles Clarke.

The Spinks are a curious mix of the very ordinary and the quite remarkable. Their house in Battersea is comfortable but not big.

"Someone kind gave us some money so that we could have a cleaner," says Henrietta. "But, once it runs out, she'll have to go."

Henrietta herself comes from aristocratic stock - her great-uncle is the Duke of Sutherland - but her father left when she was little and her own childhood was relatively tough. She no longer has regular or friendly contact with that rich side of the family, and they've never given her any money to help with her sons. "They don't owe me anything," she says. "I'm sure they have different priorities and I just shrug my shoulders about it - the richer you are, the more you forget what it's like to need."

Henrietta does not rail at the Fate that allotted her Henry and Freddie. She got over her self-directed rage and guilt a while ago.

"It's been an extraordinary journey-with the boys, terribly lonely, really isolating and confusing. Other people make it harder sometimes. You go through an early stage of asking, 'Why me, what did I do wrong?' and trying to rationalise it. And you'd be staggered by how many people say yes, it is your fault, what did you do wrong?

"You learn not to let that affect you, and to hold on to your dreams for your children." Instead, she has channelled her phenomenal reserves of energy into an information service for other parents of disabled children called the Henry Spink Foundation - backed by the likes of Felicity Kendal and Trudi Styler, and born from the frustration and bewilderment she felt in the face of Henry's inexplicable condition.

And it remains baffling. Years of research, conducted privately and often alone, have led the Spinks to one plausible but unproven theory: that the mercury in Henrietta's fillings may have caused a biochemical reaction while she was pregnant and polluted the placenta surrounding her babies.

All the research and fundraising had to stop while the Spinks battled Wandsworth. It's been a long haul, and the family hit rock bottom halfway through.

Henry was about to begin his secondary special-needs education, and the Spinks - according to the 1996 Education Act, which gives parents the right to choose schools - picked a school for him in the borough of Kingston-upon-Thames.

Yet Wandsworth refused to send him there, claiming it was more expensive than their own specialneeds facility and invoking a judgment that, contrarily, allows local authorities to prohibit parental choice according to cost.

Since the Kingston school cost £ 4,000 a year more than Wandsworth's, according to figures produced by the local education authority, the Spinks offered to make up the difference. But, as no one's allowed to pay for state schools, the dispute went to tribunal - at a cost of £20,000 a day to the taxpayer and £15,000 overall to the Spinks, who lost.

"That weekend afterwards was the worst of my life," says Henrietta categorically. She and Michael knew that Henry wouldn't thrive at the Wandsworth school, where disturbed and disabled kids are mixed, and where some children have been bitten by another. Those with similar physical disabilities to Henry, says his mother, are "just stuck in a corner". She adds: "Though the teachers there are some of the most dedicated I've met, the facilities just aren't up to the mark."

It was Christmas and Freddie had recently undergone a series of six operations to stretch his throat and stop him choking on his own saliva. Henry had missed a whole school term and was beginning to deteriorate physically in the absence of the therapies he'd been getting at primary school.

"It was unreal, a complete disaster. You go through a massive psychological roller-coaster anyway with disabled children, and no one addresses those issues ever. I actually thought about taking my life and my children's lives. And then something inside me just snapped and said, 'This is so wrong. Scrape yourself off the floor, get through this, and try and change the system.' So that's what I set out to do."

She and Michael took the case to a review hearing and, in the course of their researches, discovered that a number of figures presented at the first tribunal were simply wrong.

In fact, placements at both schools were almost identical in cost, and Henry - classified as suffering the most severe form of learning difficulty - was entitled to more money than Wandsworth had hitherto admitted. The decision was overturned and Henry went to the school that best catered for his highly specific needs. Huge amounts of money had been spent - enough to provide the very best care for a number of special-needs children - for precisely nothing.

The root of the problem is also about money. Since a legal judgment in 1994, local authorities can take into account their own finances when deciding what services, and access to schools, a disabled child is entitled to. Inconsistencies across London are huge - and seemingly dependent on levels of compassion as much as honest assessments of need.

In its defence, a spokesman for Wandsworth said the system worked perfectly fairly for the Spinks. "The council's case was that the support needed for Henry to attend the school in Kingston had been underestimated, and costs would be far higher once all the provision - including additional school support and home-to-school transport - were allowed. This has subsequently been borne out by events after the review hearing."

As for the family's £15,000 legal debt, the spokesman said there was usually no need for lawyers to get involved in the process of selecting schools. "The tribunal system was designed as a no-cost option for parents. There is no expectation that parents must engage lawyers to represent them. The council will only do so when the parents are represented. Tribunal panels are skilled at listening to parents in a supportive way, and the use of lawyers is in most instances an unnecessary expense. Panels much prefer to hear direct from parents and those who actually know the child well."

Henrietta, meanwhile, is adamant that therapies for the disabled should be treated in the same way as medical services and provided free as a right. At the moment, their allocation is patchy and has to be fought for. She gives one last example, rolling her eyes in disbelief. "We took Wandsworth to tribunal on behalf of Freddie, too," she says. "He was eight years old and had just spoken his first words. He was desperate to speak and trying hard."

After several assessments by an educational psychologist, a certain amount of speech therapy per week was recommended. Wandsworth refused to provide it.

"At the tribunal, the panel found for us and gave Freddie 30 minutes of occupational therapy, 30 of physiotherapy and 15 of speech therapy per week.

"The cost of Wandsworth's barrister was £1,500 and the cost of the tribunal was £20,000 of taxpayers' money - all to contest the provision of therapies costing £2,000 a year. Does that seem crazy to you?"

Those wishing to support the campaign can contact the Henry Spink Foundation Resource Centre, Equity House, 209 - 211 City Road, London EC1V 1JN (0207608 8789).