Wide variations in the quality of services for patients with rare blood disorders are at least partly a result of their prevalence among ethnic minority communities, Nursing Times has been told.
A major peer review of services for patients with sickle cell disease and thalassaemia in England found just a fifth had adequate numbers of appropriately skilled staff, with specialist nurses in particularly short supply.
The review by the West Midlands Quality Review Service looked at 34 services across England. Just over two thirds had a lead nurse and only 29% of those provided cover for this individual. By comparison only three centres did not have a lead consultant and 71% provided cover for leave and absence. The review found a nurse in one organisation who was on call 24 hours a day, even taking calls while on holiday.
Elizabeth Anionwu, the nurse who co-founded the first sickle cell and thalassaemia treatment centre in the UK, told Nursing Times the lack of nurse specialists was “worrying”.
“I don’t think you would find the same variability with cystic fibrosis for example. I think the equality bodies and the NHS should treat this report as a call to address these inequalities,” she said.
Despite its higher profile there are about 5,000 fewer UK patients with cystic fibrosis than with sickle cell.
Many patients told the review team they were left feeling like “second class” haematology patients as they regularly lost out on beds on specialist wards to patients with white blood cell disorders such as leukaemia.
Sickle cell disease is the biggest genetic condition in the UK, affecting about 15,000 people mainly of black African or African-Caribbean origin. NHS England estimates there are about 1,500 people living with thalassaemia, mainly of Mediterranean and Asian origin.
Both are chronic diseases of the red blood cells which can affect every organ in the body, causing debilitating pain and often requiring regular blood transfusions.
Sickle Cell Society chief executive John James said race definitely had “a role to play” in the variability of services.
Elaine Miller, national co-coordinator at the UK Thalassaemia Society, told Nursing Times red cell haematology was the “poor relation” to white cell haematology.
She said: “If these conditions affected the white mainstream population rather than ethnic minority communities, maybe they wouldn’t be so badly overlooked.”
NHS England has acknowledged there are “inequities” in access to high quality haemoglobinopathy care due to a combination of the “varied prevalence” of the conditions and “the known difficulties in delivering care to minority groups”.
A spokeswoman said they would be working closely with providers to make sure all patients have access to high quality services wherever they live and would “look closely” at the findings of the review.
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