'I spent 20 years in a living hell'

Heal;th Correspondent Barry Nelson talks to a patient whose life was made unbearable because she was left on the same medication for 22 years.

WHEN Irene Ritchie, went to her doctor complaining about acute anxiety, she was given a powerful tranquillising drug. And although the drug worked and calmed her down, Irene began to develop alarming new symptoms.

"I felt myself stiffening up and my body started twisting. I couldn't sit still and began pacing up and down all the time," says Irene, 69, who was 45 when she first began taking the drug.

What she didn't know was that the drugs she was prescribed, initially Parstelin and then Stelazine, should only be given to patients for a limited period because of the risk of severe side-effects. But because of her doctor's failure to monitor her condition, she stayed on drugs containing the active agent trifluorperazine for 22 years.

Irene reported her problems to her GP and asked whether he could refer her to a specialist but no action was taken. And over time, the drugs had a devastating effect on Irene's life.

"I didn't want to go out because I couldn't stay still and I lost touch with friends and family. I wouldn't open the door to them in the end," she says. "Eventually, everyone abandoned me."

The drugs had such a terrible effect on her that she felt too self-conscious to even go anywhere on the bus or metro. "I literally couldn't keep still, I moved backwards and forwards constantly," she explains.

Normal life became impossibly difficult. Because of constant movements, she found it difficult even to wash properly.

One of the few pleasures that Irene enjoyed during this time was listening to pop records on her daughter's record player. "My daughter was at college but I'd go up into her room and play records and shuffle around to music. It was one of the few things that kept me going," she says.

The side-effects also had an impact on Irene's mental health, something she only realises now she has been restored to normality. "I became paranoid, I had all sorts of ridiculous superstitions and half the time lived in dread of something terrible happening," she says.

The nightmare ended when Irene's doctor announced he was retiring from his Northumberland Square practice in North Shields and Irene went to see another local GP, who immediately expressed concern.

"I'd only been in the room a few minutes when he asked me why I was moving about all the time. He looked at my medical records and realised straight away that I was suffering from side-effects from the drugs."

Within a few months Irene was weaned off her medication and given physiotherapy to help her get back to reasonable physical shape. She knew she was winning when she managed to travel into town on her own for the first time for years. "I travelled on the metro sitting down. That was the beginning of a new life," she says.

She also approached Newcastle solicitors Hay & Kilner to seek compensation. Recently, lawyers acting for Irene's former doctor agreed to make an undisclosed five figure payment to Irene.

The mother-of-one is bitter that so much of her life has been ruined. "I go all over now. I love travelling and visiting people. I've had my hair cut spiky," she laughs. She even dyed her hair purple for New Year.

Dr Nicholas Wilkes, her solicitor, says: "This illustrates the dangers of patients being on medication for a long time without close supervision." One of the few medical negligence lawyers in the country who is also a fully qualified doctor, he says "any competent doctor" would know that patients should not be allowed to remain on such a powerful drug for such a long time.

"When I first saw Irene, she was in a terrible state. She was pacing the floor, writhing about and her back was having spasms. It was clear she was suffering from involuntary movements which are a recognised complication of this type of drug. It was something that should have been picked up early on."

Dr Wilkes said the drugs had made Irene's life a misery for many years.

"She couldn't live a normal life, she looked abnormal, people would comment about her in the street, she couldn't go on a bus or a metro, she couldn't hold the phone without it clattering against her head. She couldn't bend down to get something out of the oven."

Even though Irene asked for home visits or a referral to a specialist, nothing was done, until she had the good fortune to be forced to change her doctor.

"This is a lady whose life was made quite miserable and for whom even basic daily living became a severe trial. Now, thankfully, she has recovered sufficiently to lead a much more normal life. Now she can enjoy life again," says Dr Wilkes.

Ironically, according to the Association of the British Pharmaceutical Industry, even if Irene had suspected side-effects were responsible for her increasing health problems, she would not have been able to get information from the company which made her medication. While the industry provides patient information leaflets with every drug prescribed, they are not allowed to answer queries about medication from patients.

"If this lady had contacted the company which makes this particular drug they would not have been allowed to give her the information she needed," says an APBI spokesman. "We can talk to doctors but not to patients. We would very much like to be able to change that but we are restricted by law."

Even the information provided about possible side-effects in patient leaflets cannot spell out which problems are more likely to be experienced.

"The language used in the leaflets tends to be rather legalistic. They have to cover certain things in a certain way, by law, so while we try to make them as user-friendly as possible, they can often leave matters open to question," the APBI spokesman says.

"The labels also give you the chemical make-up of the medicine but for 99 per cent of people that will mean very little. What they would like to know is more basic stuff and, unfortunately, we are not allowed to do that."

Apart from raising concerns about medication with your doctor, a good idea would be to talk to your local pharmacist. "The ingredients in medicines are powerful chemicals which interfere with the body's chemistry, they should always be treated with respect," says the spokesman.

Dr Jim Kennedy, the Royal College of General Practitioners spokesman on prescribing issues, says: "The RCGP supports and advocates that patients receiving long term medication receive at least an annual review from their general practitioner. In the case of tranquillisers we support the British National Formulary guidance which advises care in their use and only short periods of treatment with very regular reviews. Reviews should look at the whole patient and their underlying condition, as well as their medications."

For Irene, at least, the sad tale has a happy ending. Despite the years of suffering, she has recovered her zest for life.

"Since she came off the drugs her condition has improved dramatically and gone on improving," says Dr Wilkes. "She is a new woman."

* Hay & Kilner are based at 30 Cloth Market, Newcastle upon Tyne. 0191-261 7704.