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| 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.
An Appeal
- There is long-term condition called ‘failure to listen to the public’ that
has infected the statutory sector. This long-term condition needs a long-term
view and massive reserves of determination to overcome its more deleterious
effects. Your time and your determination will help find a
cure. Please (continue to) give generously…...
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 (bpv.org.uk)
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.
