Health chiefs axe funding for sickle cell support group in Brent

PUBLISHED: 13:31 09 December 2016 | UPDATED: 15:35 09 December 2016

The service was provided by the Sickle Cell Society

The service was provided by the Sickle Cell Society


Health chiefs have decided to axe the funding for a support group for Brent residents suffering from Sickle Cell disease after it was given a temporary reprieve.

Brent Clinical Commissioning Group (CCG) revealed last week it will go ahead with the decommissioning of Brent Sickle Cell Advice and Support Service (BSCASS) before the end of its three-year project.

The plans first came to light in September but following a public outcry the proposals were suspended.

BSCASS will now be replaced with a service called Whole Systems Integrated Care (WSIC) over the next three months.

Brent CCG claimed the service was ‘not delivering its agreed objectives’ and had not reached enough people but the Sickle Cell Society (SCS), which runs BSCASS, claims the holistic support and outreach provided to sufferers had resulted in a reduction in hospital admissions.

SCS, which is based in Station Road, Harlesden, claim the WSIC programme is unsuitable for the needs of people living with sickle cell, because it is a rare disease with often complex needs.

John James, CEO of the Sickle Cell Society, said: “The Sickle Cell Society is highly disappointed in the decision that Brent CCG has taken. Sickle cell is a lifelong condition presenting with complex medical and social needs, and we are concerned that these needs cannot be met by the CCG’s choice to replace the BSCASS with a more generic model of care with unproven effectiveness for sickle cell.

“The BSCASS had been starting to demonstrate a tangible positive impact on the health of people living with sickle cell, with a reduction in hospital admissions. This reduction would also have had financial benefits for the CCG.

“We believe the decision to terminate the service reflects a wider lack of understanding of the needs of people living with sickle cell, and a lack of collaborative commissioning between Brent CCG and NHS England Specialised Services.

“The society will continue to provide information, advice and support to the sickle cell community in Brent and beyond, although without the support of Brent CCG we will not be able to provide support at the level of BSCASS.”

Dawn Butler, Labour MP for Brent Central, said she was ‘deeply concerned’ by Brent CCG’s decision.

She added: “I believe the decision to shut it down will have a negative impact on all those local people suffering from sickle cell who have come to rely on the support this service provides.

“I do not believe the alternative proposed by the CCG will adequately meet the needs of sickle cell patients who often require highly specialist care and support to manage their condition in the long-term. I will continue to work with and support the Sickle Cell society to find a better outcome for local sickle cell patients.”

Brent CCG said it will continue to engage with statutory and voluntary sector agencies to ensure it has a ‘collaborative approach’ that improves services for patients.

Dr Ethie Kong, chair of Brent CCG and a local GP, added: “While the pilot service clearly benefited a number of local patients with sickle cell, local GPs on our governing body think we can improve care in a different way.

“By using the multi-disciplinary teams we already have in primary care under our ‘whole systems’ programme, we now have an opportunity to develop personally tailored care plans for patients with this condition which is coordinated by their GP.

“We can assess how much support people need, use care navigators to direct them to the right support – both in terms of welfare advice and clinical care – and treat other long terms conditions patients may have in one place.”

Advice and other services provided by the Sickle Cell Society are not affected by the closure of BSCASS.

Related links: Sickle cell support group in Brent to close after health chiefs axe its funding

Temporary reprieve for sickle cell support group in Brent facing closure

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