Thursday, 8 September 2016

Reprieve for Brent sickle cell project

Photo: Kilburn Times

Previous articles on Wembley Matters drew attention to the possible closure of the Brent Sickle Cell project LINK LINK.  The Brent Clinical Commissioning Group met yesterday and heard representaions on the issue. In this guest blog, written in a personal capacity, Nan Tewari reports on the outcome.

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In a real instance of ‘you said, we did’, Brent CCG (clinical commissioning group) listened to patient and public representations and granted a short reprieve for the BSCASS (Brent Sickle Cell Advisory Support Service) project hosted by the Sickle Cell Society.
Brent Patient Voice ( has been very concerned about the real danger of existing users and those in the pipeline being left ‘high and dry’ if the CCG were to have gone ahead and closed the BSCASS project without an adequate, culturally specific, alternative being put in place. BPV has been in extended correspondence with the CCG solicitors DAC Beachcroft in the matter.
Brent CVS will be hosting a focus group on Thursday 15 September from 1 p.m. to 3 p.m. at their offices in Wembley Park (no change of heart on time or venue, unfortunately!). I would encourage anyone with the sickle cell condition or with experience of the condition or in a risk category, to attend and contribute to the discussion.
This will be followed by a meeting between Brent CCG and Brent council’s chair of Health and Well-Being, Cllr Krupesh Hirani on 20th September.
Brent CCG has pledged to continue the existing BSCASS project until the outcome of the two meetings. The CCG has also said it will give 3 months’ notice of decommissioning to the project which had previously been lacking.
I am hoping the outcome will be one that establishes a sensible, alternative plan. This will need to satisfy the CCG’s concerns over duplication of spending whilst equally satisfying the need for a culturally sensitive support service that can raise awareness in the wider health and care sectors, e.g. GPs, social services and voluntary sector providers, of how people can be assisted to minimise sickle cell crises and avoid hospital admissions.
The huge effort put in by Brent Patient Voice and the weight of public opinion on this blog in the Brent and Kilburn Times on Facebook and on Twitter, has paid off.
Notably, Barry Gardiner, MP for Brent North and Dawn Butler, MP for Brent Central each made strong, written representations to Brent CCG on the matter when BPV raised it with them.
My personal thanks to Martin Francis, Philip Grant, Ann O’Neill (Brent Mencap) Lorraine King (Brent and Kilburn Times) Harlesden Methodist Church and not least, to my colleagues in Brent Patient Voice.

Barry Gardiner's letter is HERE

1 comment:

Maggie Vickers said...

Some sense has reigned at last. Let's give a loud HURRAH !!!! Although I personally do not suffer this disease my training and knowledge of people who do suffer this problem and my great respect for the wonderful Haematologist Dr Milica Brozovic who was essentially "mother of the Sickle Cell Society in Brent" in the early 1980s make me feel so happy that at least there has been an interim halt of the disastrous action.