The mother of all battles

Britain's biggest ever medical-negligence settlement - pounds 3.28m - has just been awarded to a brain-damaged boy, but why did he and his mother have to wait 11 years?

It is clear that Penny Mansell is not the sort that takes no for an answer. She is the single mother who took on the system when her son Sam was born brain-damaged, and who has spent much of the last 11 years kicking hell out of a bureaucracy that was denying her the help that she so desperately needed.

As she lights up another cigarette and talks quickly and quietly about how she refused to put Sam into care, how she threatened to lob a can of red paint at the doors of social services and chain herself to their railings in an effort to get help, and how she told several managers where they could put their lack of care, it soon becomes apparent that she is not a woman who is easily deflected.

She talks about the first two years of her son's life, when he was in constant pain and screamed 22 hours a day, when he was unable to communicate the agony he was in. She explains in detail how he suffered with internal bleeding, about his hiatus hernia, the spasms, and his inability to walk, and how his limbs thrash so uncontrollably, incurring the risk of serious injury if they hit against unpadded walls and doors, that it takes four people just to bath him.

During those first two years, Penny, who was 24 when Sam was born, survived on two or three hours' sleep a night, was rarely out of her nightclothes, spent up to 36 hours at a time cuddling Sam with his damaged limbs, and was existing on pounds 35 a week benefit.

During this time, the health service was not accepting that it was to blame. That meant no compensation and none of the money that mother and son so urgently needed.

"People were talking about me as though I was a waste of space, that it was my fault. They didn't seem to have any sympathy - you've made your bed, you lie on it, was the general attitude. They couldn't understand that it was the hospital's fault, they thought it was genetic, or that it must have happened for some other reason," she says.

Sam's birth finally did cost the NHS pounds 3.28m in an out-of- court settlement agreed at Manchester High Court earlier this week, after 11 long years of hell for both Penny and Sam.

That settlement, the biggest ever medical-negligence sum awarded in Britain, estimates that the cost of looking after Sam is in excess of pounds 2,000 a week, a far cry from the pounds 35 a week that Penny and Sam had to survive on in those early desperate years.

In the kitchen of her Milford Haven home, talking about those painful times, she is still looking tired after a day at the High Court in Manchester. "Do you know, they had wanted to adjourn it for another day? I said that if I can make it with all my problems, then so can they, so let's do it," she says, stubbing her cigarette out with a vigour that might well send a few health managers running for cover.

For Penny, the events surrounding the birth of Sam at Withybush Hospital in Haverfordwest are still vivid: "He was 19 days overdue. I had pains they couldn't explain and I knew they were handling it wrong. I was in heavy labour for 12 hours and he was a breech birth and they didn't even discover that. I was having pains at a time when I was not supposed to. Usually you get contractions and pain, but I was just getting pain.

"He was deprived of oxygen and he was clinically dead for the first hour. He was having fits all the time and he screamed 22 hours a day. He was always in agony and always will be, although his intelligence is not impaired".

So how does a young single mother living alone begin to even think about coping with the demands of a baby so disabled that, 11 years later, a court would award compensation that included pounds 100,000 a year for round- the-clock professional care?

"When you have a child who needs that much, you either sink or you swim and I said I'm going to do it. There was no way he was going into a home. I knew it was going to be 10 years of hard labour, but I decided that for the next 10 years I am going to be here and that's it. I was very determined that he was not going to end up in care.

"I know that there are some family situations where, when it comes to it, the social services have to take the children. I was saying I could cope, but that I needed help. I was twice told that if I didn't stop asking for care I could have him taken away from me."

Apart from the round-the-clock nursing that she had to give her son, with the help of her parents, Margaret and Stuart, and other relatives, there were other problems too, like the time that Sam had dysentery, and again, when he had a hiatus hernia and lost a huge amount of weight. Penny also cracked her shoulder and damaged a hip while dealing with him.

"I have spent 36 hours holding a finger, and hundreds of nights holding a leg or an arm, to stop him hitting against something when he already had an injury. He would be in such pain that he would scream all the time."

She says that Sam was two years old before any real help was offered, and that was just a basic four to eight hours of relief a week to allow her to do her housework.

"It was a constant struggle to get help. They would say things like, `Are you sure you need the help because you'll be taking it off that OAP down the road'. They tried to make me feel guilty.

"I remember all the times when I was so desperate I was phoning social services six times a day and threatening to throw red paint down their doors and chain myself to the railings," she says, adding quickly, "but I never did."

She also recalls with some feeling how she went to a former GP for help with her problems, only to be advised to put Sam into care. On another occasion, she told a doctor off for the way he treated her.

"I told them all, come and be with Sam for 24 hours and you'll want to go home and have a day's rest. Add another 24 hours, and another, and another, and do that for 11 years and you'll know what I've been through. They haven't got a bloody clue."

She recalls, with a wry smile, the time she attended a meeting of care professionals to discuss her case.

"All I was asking for was a bit of help so that I could get some sleep. I wanted to sleep at night. I had two or three hours' sleep a night for seven years, that was it. Eventually, I went to this big meeting with all the local professionals and I gave them a piece of my mind. They started off by telling me not to let Sam know I was upset. How dare they say that. God, he was seven and I had looked after him all that time without them. How dare they!

"I stood up and shouted at the chairman: `I've had to say sorry to my child for the last seven bloody years.' It's not like me to swear in public, but I'd had enough. I started to walk out and it was then that they decided to help me.

"They offered me two nights of sleep a week but, would you believe, they first wanted to know if I wanted the help so I could go out and socialise. I told them in no uncertain terms that all I wanted to do was sleep."

Penny, who says that her stubbornness goes back to her wanting to be the boss to her sisters and brother, believes her ability to cope comes at least in part from her time as a practising Buddhist, when she spent two to three hours a day in meditation. "It helps you to look at problems and to deal with them. You have a kind of inner strength," she says.

She and Sam are now planning to buy a bungalow in Milford Haven where they can live together with all the modern technology and aids that should have been there from the start.

"They have robbed him of his childhood. They robbed him of all he had and then robbed him of his childhood.

"Think of all the physiotherapy that the money could have bought him. He can't get that time back. He's had no proper childhood, because he didn't have the proper equipment. It took three-and-a-half years to get a wheelchair and they gave it to him two days before the court case. As far as I am concerned, it was only two months ago that they accepted liability. To this day, you know, no one has said sorry to my face."

As she and Sam prepare to move to their new home, and try to make up for all those lost childhood years, Penny is content with what she has achieved.

"In those kinds of situations you either sink or you swim, and when I swim, I really swim. There was no way Sam was going into care. It took 10 years of very hard labour, but I bloody well did it, didn't I?"