Temporary reprieve for sickle cell support group in Brent facing closure

PUBLISHED: 16:03 09 September 2016 | UPDATED: 17:12 09 September 2016

The group was provided by the Sickle Cell Society

The group was provided by the Sickle Cell Society


Plan to axe the funding for a support group for Brent residents suffering from Sickle Cell disease have been put on hold following a public outcry.

Last week the Times revealed Brent Clinical Commissioning Group (CCG) planned to decommission The Brent Sickle Cell Advice and Support Service (BSCASS) just 16 months into its three-year project.

Health chiefs claimed the service was ‘not delivering its agreed objectives’ and had not reached enough people.

The decision had angered users of the group and Harlesden-based health charity the Sickle Cell Society, which runs BSCASS, claimed the holistic support and outreach provided to sufferers had resulted in a reduction in hospital admissions.

On Wednesday the CCG held a full governing body meeting where they decided not to decommission the group until a viable alternative service was proposed.

However the group, which faced being closed on September 17, could still be axed.

John James, CEO of the Sickle Cell Society said: “We are relieved to hear that Brent CCG has changed its mind in immediately decommissioning the Brent Sickle Cell Advice and Support Service.

“The service has been helping people living with sickle cell in the borough, and we are delighted to be able to continue with this work for the foreseeable future.

“The Sickle Cell Society are happy to work with Brent CCG in developing a community service for people affected by sickle cell, and we will engage throughout the process. We are grateful for the support given to us throughout these uncertain times from patients, healthcare professionals, politicians and Brent Patient Voice.

“Our next step is to engage in working towards developing future services.”

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 previously told the Times she was outraged by the way Brent CCG had behaved.

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 at eleven months showed that the pilot was not delivering all 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.

“Following a discussion at our governing body meeting and the representations we received, we decided to keep the pilot running while we work with local people and our partners on how best to take this type of support forward. This will include a focus group with people with sickle cell and their carers next week, investigating the evidence of what works elsewhere in the country and meeting the partners and stakeholders involved in this pilot.”

A public meeting for people suffering from sickle cell to discuss the proposals will take place at CVS Training Room, Ground Floor, 5 Rutherford Way, Wembley, on September 15 from 1pm to 3pm.

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