Sadly, the BSCASS has now closed

By Michele Salter, Vice Chair, Sickle Cell Society

Following engagement with patients, managers, clinicians and the Sickle Cell Society, in May 2015 Brent CCG commissioned Brent Sickle Cell Advice & Support Services as a pilot project to improve the provision of primary and community care services in Brent. The Executive Committee agreed a one year pilot to provide a holistic patient support and advice service that included pre–admission and post-discharge outreach support services as well as printed and online resources for sickle cell patients. We are disappointed to share the news that Brent CCG’s Governing Body have made the decision to cease the service just one year into a 3 year pilot, and no support or advice will be available to Brent Sickle Cell patients after 17 September.

In Brent CCG’s assessment, they recognised the progress that is being made, but in their opinion concluded that the available evidence is insufficient to justify continued funding. Their decision referenced low numbers of people accessing the Service, and low rates of referrals over the past year. The Sickle Cell Society contest this position as this conclusion has been reached despite the Service achieving its referral target.

The Commissioners’ assessment concluded that the Service has provided important help for some people living with Sickle Cell in Brent. Feedback from interviews and focus groups has proven a rich source of insight, illustrating the wider value of the Service to its users.

An independent evaluation report, commissioned by the Sickle Cell Society, highlighted the impact that the Service had made on people’s lives, and emphasises how important this is to their overall health and wellbeing. The report concluded that the Service is “a valued and forward thinking service model that supports the management of a poorly understood and managed long term condition, in an area of particularly high prevalence”.

Some of the most popular aspects of the service have been the advice provided about issues such as finances, benefits, housing advice, support with employment and education, emotional support and childcare. Brent CCG believe that as advice on these issues is available from other services, they intend to link people to existing services, rather than having a specialist service for Sickle Cell. However, it is clear that existing services are unable to support the Sickle Cell community in the way that only a specialist service such as BSCASS has, as evidenced by the patient testimonies. Furthermore, had the mainstream advice services been suited to the unique needs of the SCS community, Brent CCG would not have observed a gap in the care of SCD patients and there would not have been a need for Brent CCG to commission this holistic pilot.

The following points, with the SCS responses shown, have been cited by Brent CCG for their decision to terminate the service.
Number of referrals– The CCG conducted an evaluation at 9 months and the number achieved was 75% (45 against a target at the end of year one for 60 patients referred), reflective of the anticipated slow start for the set-up phase and acknowledging an unexpected long term illness of a senior member of the project team. At the time of Brent CCGs decision referrals had increased to 94% (56/60), with a clear upward trajectory to achieve 100% within a relatively short time. The SCS acknowledges that the unanticipated long term sickness absence of the senior project manager had initially a negative impact on referrals. Beyond the SCS control, Brent CCG’s withdrawal of having a community specialist nurse in post at the Brent Sickle Cell & Thalassaemia Centre was anticipated from commencement of the project to hamper referrals and sickle cell patients do not generally raise social problems with their GP. Despite these issues, following concerted effort by the project workers and since the appointment of the new community specialist nurse, the number of referrals increased dramatically.
Promoting the service– This directly related to the referral issue. SCS State that there was extensive promotion of the service with primary care as a genuinely a joint exercise between the CCG and BSCASS. SCS Refute Brent CCGs belated suggestion that this was the sole responsibility of BSCASS, that there should have been greater engagement from BSCASS. The 94% success rate and source of the referrals, indicates that this is an area of success for BSCASS, not a failed KPI.
Amber KPIs– Some of the amber KPIs reflect an absence of robust quantitative data, a point the SCS made when the suggestion was made that evaluation should be done after just 9 months. As such, the SCS believe it is unfair of Brent CCG to present as failed KPIs.

The SCS 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. For example the report makes reference to the primary reasons for support being benefit advice et al. What it does not go on to say is that these very issues can trigger crises which are then dealt with at A&E through admission or attendance. There has been no information provided by the CCG about exactly what is proposed to support people living with SCD in the community, beyond the specialised services which are commissioned by NHS England Specialist commissioners.

Moreover, the SCS believe that the BSCASS pilot shows evidence as identified by the patients themselves, of being successful against the following key objectives as set at the outset by Brent CCG:
• To improve patient experience and health outcomes
• To enable patients with sickle cell to better manage their own care and treatment, minimising their use of A&E
• To enable patients with sickle cell to become more confident and informed health service users
• To improve primary care awareness of the needs of sickle cell patients.

With regard to reducing A&E attendance and Emergency Admissions at hospital for sickle cell patients, a period of greater than one year is required, and in any event data systems do not currently exist within the NHS to track this information for the cohort of patients accessing BSCASS support. In the absence of robust hospital data systems, the evaluation report (jointly agreed with the CCG) clearly shows green for a reduction in emergency re-admission rate as a percentage of all admissions (an important factor which suggests that appropriate support after a serious crisis can help with possible readmission), green for improved health outcomes for patients –evidenced by the quarterly survey of patients, green for improved patient awareness of their own condition.

The project is much needed and of enormous benefit to Brent adult patients in the community with patients reporting they find the support service useful. It is also useful to note that 100% of interviewed patients reported increased satisfaction.

The Brent Council of Voluntary Services (CVS) have been asked by Brent CCG to host a sickle cell disease focus group on Thursday 15th September. They are inviting people with SCD and their carers to a focus group discussion about alternative models of care for patients with the disease and to provide an update on the pilot. The Society is concerned that this event is taking place after notice has been given on the BSCASS, just 2 days before the the last day of service and without an alternative identified.

Furthermore, the SCS does not understand why Brent CCG are exploring the need for an alternative model when an independent evaluation commissioned by the SCS, showed clear benefits had been derived, with a clear trajectory for further success on measurable quantitive and qualitative criteria.

To recap, since the independent evaluation in May, good progress has been made, as a result of identifying and tackling a number of improvement areas. Changes to the referral process from specialist services had a significant positive impact in referral numbers. The recruitment of a specialist nurse has supported this change; and we expect to see further benefit from this for our local population.

The Commissioners are now exploring a range of options for future delivery, including developing a peer support model with the Council. The Sickle Cell Society has offered its support to these discussions, and we hope to support the delivery of possible alternatives in the best interest of the SC community. We are best placed to do this with the support of service users and we would like to hear from those patients who have received and benefitted from BSCASS over the past year.

We would also encourage anyone in the Brent SC community, whether or not they have used BSCASS, have the disorder or trait, and other Brent stakeholders to attend the CVS patient forum on 15th September, 1pm-3pm at CVS Training Room, Ground Floor, 5 Rutherford Way, Wembley HA9 0BP. Additionally you may lobby Brent CCG, copying in the SCS in advance of the meeting.

We would like to thank everyone involved with the Service over the past year. Our door remains open and, if you would like to talk, please do not hesitate to contact us.

Download: BSCASS Evaluation Report