Wednesday, October 28, 1998 Published at 16:36 GMT
Sickle cell patients 'ignored' by doctors
Donated blood can be used to treat sickle cell patients
People suffering from the potentially fatal disease sickle cell anaemia feel they are not being listened to by the medical profession, according to a new survey.
Sickle cell patients are often either given too high or too low a dose of drugs because hospital doctors fail to take their views about their symptoms into account, says the report by the Department of Public Health Sciences at Guy's, King's and St Thomas' School of Medicine.
Previous research has shown that sickle cell patients believe they have not been given strong enough drug treatments to relieve pain.
But the researchers say this is the first survey to show people feel they are being given too many, and that they are suffering unnecessary side-effects.
The survey of 57 patients in London found most felt the medical profession tended to stereotype and stigmatise them.
Many distrusted health professionals as a result.
Krista Maxwell, one of the researchers, said: "People felt that their views were not respected and that they were stereotyped as aggressive, demanding, difficult and drug dependent."
She said several felt that this was because sickle cell mainly affects black people.
"For a long time, sickle cell was seen as a tropical disease. Some people would argue that the fact that it mainly affects black people underlies the neglect felt at all levels of the medical profession, from the Department of Health down," she said.
Sickle cell is a blood-borne disease which causes severe pain and damage to vital organs. If not treated it can be fatal.
The disease is caused by a defective protein in red blood cells which makes them irregularly shaped and inflexible and caused blockages in the circulatory system.
It affects over 9,000 people in London and it is estimated that by 2008 there will be 18,000 sufferers in the UK.
Two thirds of them will be living in Greater London.
The survey also found that people who coped with their disease at home felt they were more in control than those in hospital.
They were more likely to seek different mental strategies for coping with their illness and see it in a more holistic way.
People who were used to being treated in hospital tended to think that mental techniques were irrelevant.
"We found that repeated hospitalisation undermined people's ability to treat their illness and their confidence in their own knowledge of their condition," said Ms Maxwell.
However, the researchers said patients felt GPs and community health workers often did not understand the disease and preferred to refer patients to hospital for treatment.
The report, which is backed by the Sickle Cell Society and the King's Fund charity, is part of a campaign to raise awareness at a political and medical level about sickle cell.
Junior health secretary Paul Boateng backed the report's findings. He said: "This is an important piece of research in a poorly understood area.
"Its findings and recommendations will help inform everyone involved with developing better health services and care for people with sickle cell."
Beverley Campbell, director of the Sickle Cell Society, said: "It is vital that we look at the effective ways many people are able to manage their own pain and help those who do not to develop their own methods of self-reliance."
Sickle cell is most common in people of African origin, but also affects people from South and Central America, the Mediterranean, the Middle East and East India.
It can lead to acute chest pain, anaemia, palpitations, bone wasting, painful swelling of hands and feet, strokes, an enlarged spleen and other infections, such as meningitis.
There are a variety of treatments for the disease, including strong pain-killing drugs.