CCG asked to review decision to discontinue promising pilot project for Sickle Cell patients


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Sickle cell disease is the name for a group of inherited conditions that affect the red blood cells. The most serious type is called sickle cell anaemia. It has a higher presence among people of African and Afro-Caribbean heritage.

Last year, following a high-level meeting involving councillors, the Clinical Commissioning Group, acute trusts and the Sickle Cell community in Brent – one of the largest in the country – the CCG agreed to fund a pilot Support and Advice Service for Sickle Cell patients.

BPV members attending a recent CCG Governing Body meeting were surprised and concerned to hear that the CCG was rejecting the recommendations of an evaluation report of the first 11 months of the service to extend it for another year to obtain enough information for a thorough assessment. First indications from those receiving the service were positive.

As a result Peter Latham, our Vice-Chair, drafted a paper setting out a reasoned case for continuing the project in order to get more evidence as to its worth. We were particularly concerned that no viable alternative was on offer. There is a nationally important Sickle Cell Unit at Central Middlesex Hospital but the point of the Advice and Support Service is to help patients manage their condition in the community and cope with the various personal and social problems the condition can involve.

You can see our paper here: 

 

 

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