A support group for Brent residents suffering from Sickle Cell disease is to close after health chiefs withdrew its funding despite the service resulting in a reduction in hospital admissions.
A decision by Brent Clinical Commissioning Group (CCG) to decommission The Brent Sickle Cell Advice and Support Service (BSCASS) 16 months into its three-year project has angered people who say the group has improved users’ health.
Sickle Cell disease sufferers produce unusually shaped red blood cells that can cause problems including infections and anaemia.
The cells can become stuck in blood vessels which cause painful episodes called sickle cell crises, which can last up to a week.
It is a chronic illness which can prove fatal in the most severe cases.
According to Harlesden-based health charity the Sickle Cell Society, which runs BSCASS, the holistic support and outreach provided to sufferers has resulted in a reduction in hospital admissions.
Set up in May last year, BSCASS also provides advice to residents suffering from the inherited blood condition which predominately affects the black community.
It is scheduled to close on September 17.
Michele Salter, vice chairwoman of the Sickle Cell Society, said they had seen a reduction hospital admissions since the group was set up.
She added: “We are truly disappointed in the decommissioning of the group.
“Sickle Cell disease is poorly-understood, and the Sickle Cell Society believes Brent CCGs decision reflects both a lack of understanding of SCD and perpetuates inequalities for groups of patients with SCD in deprived parts of the borough.”
Nan Tewari is a local patient activist and the secretary of Brent Patients Voice, a group that campaigns for transparency within the health services.
She said she was outraged by the way Brent CCG has behaved.
She told the Times: “They didn’t communicate with anyone. The group offers support that is unavailable elsewhere.
“It has only been a year. They are leaving users of the group high and dry.”
Cheryl Phoenix, who lives in Willesden, lost her partner Dele Akinlade to Sickle Cell in 2007.
She told the Times: “I am disgusted and infuriated and confused.
“Why are they is happy to cut funding for something that affects the black community?
“If it was something that affected the masses it would be funded properly. We are talking about people’s lives here.
“If people are using this service why is it being cut?”
Samantha, a user of the group, added: “I’m sad to see it go.
“The support and advice given by the group has helped improve my health and made me feel better able to manage my sickle cell.
“No other services in the area provided me with the help I needed before, and I am afraid that there will be nothing to help me once the group is closed.”
A spokesman for Brent CCG said: “The CCG is absolutely committed to ensuring that people with sickle cell disease in Brent receive appropriate care and support.
“A year ago we commissioned this service on the basis that it would be treated as a pilot and evaluated after a year. That evaluation showed that the service is not delivering its agreed objectives. It has not been reaching enough people and where the service has provided benefit to local people, it was through advice and support that is already available from other services. On that basis, the CCG is planning to decommission the service. The CCG is actively engaging with people with sickle cell disease in Brent to ensure that we can continue to commission services that do meet their needs. We will not leave patients without support.
“We have received concerns from Brent Patient Voice and are taking them seriously. As we have informed BPV, the concerns will be considered by a meeting of our full Governing Body on 7 September, and we will respond in full shortly after that meeting.”
Brent CCG will be holding a public meeting at CVS Training Room, Ground Floor, 5 Rutherford Way, Wembley, on September 15 from 1pm to 3pm.
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