Wandsworth PCT ... Reducing inequalities through screening
"We are in a very diverse society and a lot of us are unaware of our genetic background." Nadine Hay, Specialist Nurse Counsellor, Wandsworth PCT
Participants in Wandsworth PCTs Sickle Cell and Thalassaemia Awareness Week, held in July this year
Ten years ago, Nadine Hey was told she was a sickle cell carrier after undergoing a routine operation to have her wisdom teeth removed. But rather than putting her mind at ease, the dental nurse who informed her could tell her nothing about the condition. "She didn't know anything about it," says Nadine. "I was left confused. I felt saddened and quite nervous because I didn't know how this was going to affect me and my life."
Nadine, then a practicing midwife, left the surgery determined to find out more. Ten years on she is now a Specialist Nurse Counsellor in Sickle Cell, Thalassaemia and related disorders working in a pioneering department at Wandsworth Primary Care Trust.
Sickle cell anaemia is a blood disorder which affects the haemoglobin in the red blood cells and prevents oxygen from getting to where it is needed in the body.
Sufferers experience anaemia and severe attacks of acute and chronic pain known as crises. Over time, their internal organs can be damaged, resulting in reduced life expectancy. The disorder affects primarily people of African and African-Caribbean origin, around one in four of whom carry the sickle cell gene, as well as smaller proportions of people from Asian and European backgrounds. Though carriers of the gene themselves have no symptoms of their own, a couple who both carry sickle cell trait have a 25 per cent risk of having a child with the full-blown disorder. Research shows there are around 10,000 sickle cell sufferers in London alone, a figure that is projected to rise to more than 12,000 within the next ten years due to intermarriage and immigration.
The haemoglobinopathy service in Wandsworth was one of the first of its kind when it opened with just one specialist nurse counsellor in 1992, offering help to children and their families with sickle cell, thalassaemia and related conditions.
The service now has three specialist nurses and has screened all babies born in Wandsworth for sickle cell and thalassaemia since 1997. But within the past year, the service has taken screening to a new level with a ground-breaking initiative to offer antenatal genetic screening to every pregnant woman and her partner.
Wide risk
With over twenty-two per cent of the population from black and minority ethnic backgrounds, sickle cell and thalassaemia is a big issue for Wandsworth. But Nadine says it is only recently that it has been recognised that absolutely anybody can be affected.
"This is not something that only affects black and minority ethnic people," she says. "The test has to be universal. We live in a very diverse society and a lot of us are unaware of our genetic background. It's no good looking at people and making assumptions - there is a lot of mixing going on."
Nadine said the move was an important one as it recognised the importance and prevalence of a disease that has for too long been sadly neglected in service provision. "Before this, children were getting missed and families were having children without knowing the risks," she says. "If a child inherits the disease with all its dreadful symptoms, it can be a very traumatic experience. People are very clear about what they want. The question they would ask is why weren't they told."
Before Wandsworth's initiative, run jointly with St George's Healthcare NHS Trust, Nadine says the "genetic question" was left up to midwives, who often felt uncomfortable asking people about their ethnic origin. Effective training from the sickle cell and thalassaemia team has largely overcome those fears and the service now receives up to 250 test results every fortnight taken from expectant parents.
The results from the laboratory at St George's Hospital are analysed, and if for example a woman result indicates she has sickle cell trait she is invited to attend counselling with or without her partner to be given more information. Pre Natal Diagnosis is discussed with the woman/couple. Mothers can opt out of testing during their pregnancy, in which tests can be carried out once the baby is born. In every case, Nadine is on hand to support the couple through the whole process.
Long term help
"Whether they want to terminate the pregnancy or wait until after the birth to test for sickle cell and thalassaemia, I support them through that," she says. But the help doesn't stop there. Staff are on hand to support patients and their families through every aspect of living with sickle cell and thalassaemia, from managing their pain at home, to accessing the state benefits to which they are entitled and applying for local authority housing which meets their medical needs. Nadine says she has experienced an uphill struggle during her decade with the service, but is pleased that health care providers are finally becoming more knowledgeable about the disease.
For a long time, the three-strong Wandsworth team based at Balham Health Centre had to cover both the community and the acute trust, where it was common for a small proportion of severely ill patients to spend more than six months per year in hospital. It is only within the past year that a specific post for clinical nurse specialist in sickle cell and thalassaemia has been created within St George's Hospital.
"There have been times when the workload was very heavy indeed and a great deal of commitment has been demanded," says Nadine. "Progress has been extremely slow and it has been extremely frustrating. I don't know whether that is because this is seen as primarily a black and minority ethnic issue. But it does seem as though we are finally moving in the right direction."