Following the news LINK that Brent Clinical Commissioning Group have decided to stop the funding of the Brent Sickle Cell Advice and Support Service (SCASS), which was temporarily reprieved by widespread protests, including that of Dawn Butler, MP for Brent Central and Barry Gardiner MP for Brent North, Robin Sharp of Brent Patient Voice has sent me the following comment:
Brent Patient Voice (BPV) is dismayed by the decision of the Brent CCG Governing Body on 30 November to withdraw support from the Brent Sickle Cell Advice and Support Service.
This decision was originally made by the Governing Body on 2 July and only paused because BPV challenged the way it had been taken. At the time the Service was faulted based on data from only the first nine months of operation which was totally inadequate for demanding targets to have been met. There had been delays in recruiting staff and long term sickness had affected one of the workers. The independent evaluation report was very positive about the quality of the Service and the benefits to those who had used it. It suggested that based on trends from when it had become fully operational it would have met targets within a few months. We were shocked when we saw letters from the CCG to local MPs suggesting it was cheaper for Sickle Cell patients to have traumatic episodes requiring treatment in A&E than to be helped to avoid such trauma by the Advisory Service.
In our view and based on the evaluation report, the Advice and Support Service has been valuable in helping Sickle Cell sufferers to cope with social issues such as housing, benefits and employment by explaining to providers of these services the special features of Sickle Cell. Indeed we heard that Sickle Cell groups elsewhere were interested in it as a model.
The Governing Body in September agreed to review the situation and a so-called Focus Group was hosted by the Council for Voluntary Service on 15 September. This was attended by Sickle Cell representatives and patients as well as several members of BPV. In our view the weight of opinion in this meeting was strongly in favour of a service with the main characteristics of the existing BSCASS. The CCG ignored these views and decided to proceed with their preferred option of referring Sickle Cell patients to Care Navigators in the Whole Systems Integrated Care programme. These Navigators are only just beginning to operate and will have large caseloads across the spectrum of elderly vulnerabale patients. We have severe doubts as to whether they will be able to offer any practical help to Sickle Cell patients.
Speaking personally I see this decision as heartless and irrational.
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| Cllr Muhammed Butt, leader of Brent Council with Dr Ethie Kong, Chair of Brent CCG |
This is the document BSCASS presented to the Brent CCG in July this year to appeal against the earlier decision to stop funding them: