Service update: Brent CCG decides to terminate sickle cell support service

The Brent Sickle Cell Advice and Support Service (BSCASS), a holistic community sickle cell service provided by the Sickle Cell Society in collaboration with London North West Healthcare NHS Trust, will be decommissioned by Brent Clinical Commissioning Group (CCG).

The BSCASS provides emotional and practical support, health advice and information to adults living with sickle cell disorder in the borough of Brent. In its first year evaluation, the BSCASS was shown to have had an impact on reducing hospital admissions in the area and strongly positive feedback from Brent’s sickle cell patient community. Nonetheless, the service was threatened with closure by the CCG in August 2016. Due to public pressure, the BSCASS received a reprieve in September 2016, with the CCG agreeing to continue to commission the service. Despite an independent updated evaluation showing the BSCASS service represents value for money, a net saving to the CCG and performance in line with its business case, including the target number of referrals being met in full, on November 30th, the CCG announced they will discontinue the service. Despite Sickle Cell Disorder being recognized by NHS England as a rare disease with often complex needs, the CCG say that Sickle Cell patients should not receive specialist care in the Community and instead should receive support within the generic long-term condition service Whole Systems Integrated Care (WSIC). The Sickle Cell Society has concerns that the WSIC programme is unsuitable for the needs of people living with sickle cell. The WSIC requires that patients engage with their GPs, however recent research has found that only around 5% of planned care for sickle cell takes place at the GP’s office, and more to, due to its rareness, patients perceive GPs’ knowledge of sickle cell to be the lowest of any medical staff. Furthermore the CCG confirmed that the WSIC will not measure specifically whether the programme has met the needs of people living with sickle cell or reduced their admissions to hospital, unlike the requirements made for BSCASS. There is therefore no incentive for GPs to increase their engagement with SC patients, or develop their skills and knowledge of this rare condition.

MP for Brent Central, Dawn Butler and MP for Brent North, Barry Gardiner, are among those expressing concern at the closure of the BSCASS, and have shown an active interest in the fate of Brent’s sickle cell community services throughout the process of negotiating with Brent CCG.

The BSCASS will remain open and providing services throughout the 3 month notice period. The Sickle Cell Society itself, which is a national service, will remain open and will continue to provide a helpline service for those affected by sickle cell. If you wish to self-refer to the BSCASS you still can at this link.

CEO of the Sickle Cell Society, John James, says:

“The Sickle Cell Society is highly disappointed in the decision that Brent CCG have 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 met in full this year the target referrals and had demonstrated a tangible positive impact on the health of people living with sickle cell in Brent, with a reduction in hospital admissions. This reduction would also have had financial benefits for the CCG far-exceeding the annual cost of BSCASS. The CCG have no evidence that WSIC can deliver the aims and objectives of BSCASS. Furthermore, 2016/2017 costs of BSCASS is less than £1,250 per referee, which is less than half the cost of a hospital admission of c.£2,500 according to the business case to fund WSIC dated February 2016.  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 targeted support to the most in need in Brent at the level provided by BSCASS.”

MP for Brent Central, Dawn Butler said:

“I am deeply concerned by the decision taken by Brent CCG this week to not re-commission this vital service. 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.”

All other Sickle Cell Society services will be unaffected by the CCG’s decision. This includes South London Sickle Cell Link, the Children’s Activities Programme, the Helpline, and the information resources we produce.