'No amount of money will bring back my Clare. Nothing will take away the pain'

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Indy Lifestyle Online

When Roger Tomkins described weeping helplessly as his daughter wasted away to a slow and excruciating death, "eyes full of fear... howling like an injured animal", there was a stunned silence in the packed inquiry room. Then a spontaneous round of applause burst out from those present, many of them in tears.

When Roger Tomkins described weeping helplessly as his daughter wasted away to a slow and excruciating death, "eyes full of fear... howling like an injured animal", there was a stunned silence in the packed inquiry room. Then a spontaneous round of applause burst out from those present, many of them in tears.

The Phillips inquiry was one personal landmark in Mr Tomkins' painful journey towards reaching some kind of reconciliation over the death of 24-year-old Clare. Yesterday's news that the Government is at last agreeing to a compensation package for the families of those who died from the human form of mad cow disease (BSE) was another one.

"If this really does happen, it will be an acknowledgement at last that a grave injustice had been done. We have waited a long time for this admission of accountability," he said.

"The money itself is not important, it will not bring back my Clare or the others who have gone. Nothing will take away the pain, nothing will bring back those we have lost..." His voice faded away.

Mr Tomkins lost not just his daughter to variant Creutzfeldt Jakob disease, but also, indirectly, his wife, Dawn. She died two months later from ovarian cancer, heartbroken at what had happened to Clare.

As the toll of the dead from vCJD mounted, Clare attracted attention because she had been a vegetarian for 11 years. It was the first ominous sign that the incubation period for the deadly condition was far longer than previously believed.

Clare worked at the pets department of a market centre near her home in Tonbridge, Kent. She had given up meat because of her love of animals and would not, say her friends, knowingly have taken any meat product. The first sign that something was wrong was when her weight began to fall, and she appeared to be suffering from depression. The treatment prescribed comprised anti-depressants and anti-convulsive therapy.

Mr Tomkins, 54, recalled: "Clare was at a psychiatric clinic where they simply could not work out what was wrong with her. When they said they would carry out tests for multiple sclerosis and CJD, I said, 'You can forget CJD for a start, my daughter has been a vegetarian for years'. She would drink milk, but she certainly would not have anything else derived from cattle.

"Then the results came. I remember the doctor saying, 'We shall have to rewrite the medical books.' We were all in a state of shock. How could this be happening?"

In August 1997, after the diagnosis, Clare came back to the family home. Her family and boyfriend, Andrew, accepted she had come back to die. The months that followed were harrowing for all of them, especially Clare's sister Lisa. The two had been very close.

Mr Tomkins recalled: "Clare was to deteriorate badly. This wonderful girl, once so full of life, could not see, she could not hear, she had to be fed through a tube in her nose. All I could see was the fear in her eyes, the pain she must have been feeling."

Then fate dealt another cruel hand to the Tomkins. In September of that year Mrs Tomkins was found to be suffering from cancer. She had been distraught about Clare and Mr Tomkins is convinced that contributed to what happened.

"The doctors told me that her immune system had been badly affected by all the stress over Clare, that's when people are affected by predatory diseases - that's when cancer took her," he said in a quiet voice at his home in the Norfolk Broads.

"There was Clare in one room terminally ill and Dawn in another. I gave up my job, it was full-time work looking after both of them. I knew I had to be strong, but I am afraid at times I just broke down and cried. I felt so frustrated, so helpless, so desperate to do something, but not knowing what to do. But then I thought, am I just very selfish crying? Shouldn't I just get on. Everything seemed so confused."

Clare died in April 1998. "There was no drama, no suffering at the end. She just passed away peacefully in my arms. She just looked at me and drew her last breath. I went on looking after Dawn. She died two months later."

Life went on. Lisa had twochildren. Andrew now has a new partner. Mr Tomkins decided to move away from Kent to the Norfolk village where the family had happy and contented holidays. He bought a little sailing boat.

Then, in Norfolk, he met Sarah, a woman Dawn had got to know during the vacations. It turned out her husband had died of classical CJD, a disease related to Alzheimer's. They are now a couple. "I had gone to tell her about Dawn," he said. "We got on very well together. Sarah had given me a bit of comfort, bit of peace, we are happytogether."

Mr Tomkins missed the first few months of the Phillips inquiry while he was looking after Clare and Dawn. After that he became a regular visitor, taking notes, building up a compendium of documents, which now spills out of every corner of his study.

"I felt it was my duty to go to the inquiry as often as possible. We have been told that it was the family's inquiry, they were doing it for us," he said. "Some of the things we heard about the conduct of ministers and senior civil servants were pretty shocking. It was, of course, Conservative ministers who were in power at the time. But this is not a party political thing, the government of the day was responsible."

Only after attending the inquiry, Mr Tomkins said, did he realise just how important it was. "The fact it took place was immensely significant. What we have found out is that money was put before health. Hopefully, this will help prevent this ever happening again. People matter, life matters."

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