Saturday, 20 August 2016

Anger mounts in black community over threat to Brent Sickle Cell project

For readers unfamiliar with the impact of sickle cell this video provides some background

There have been a number of angry reactions to Nan Tewari's guest blog LINK about the threatened cut to the funding of the Brent Sickle Cell project which highlighted the threat itself and the failure to adequately consult with the populations most affected in Stonebridge and Harlesden wards.

The decision of the Brent Clinical Commissing Group to hold a consultation meeting at an inconvenient time in Wembley Park drew this response:
The decision to hold the meeting away from Harlesden and Stonebridge is a deliberate and cynical act of tokenism by Brent CCG and renders the meeting as merely a 'paper exercise'. Why is Brent CCG treating this vulnerable group of patients in such a dismissive way?

It would appear that Brent CCG is increasingly showing itself to be incapable of performing it's functions with any degree of competence.

Time it was held up to public scrutiny.
One comment asked bluntly if it was 'because we are black?'

Nan herself put it in the context of the treatment of residents in Harlesden and Stonebridge and the perceived lack of action by local councillors.
As if it weren't bad enough that the Central Mid A & E was closed down.....

As if it weren't bad enough that sickle cell treatment was moved to Northwick Park, 2 buses away......

As if it weren't bad enough the Harlesden population lives a decade less than others in Brent......

I suppose after closing down the Stonebridge adventure playground, Brent's councillors are too embarrassed to take Brent CCG to task over this - if indeed the sleepy councillors can even be bothered about it - after all, Harlesden and Stonebridge are pretty much captive voters for them.
Leroy Decosta Simpson, Harlesden activist said that he would would like to see the paperwork and get his 'big bwoys' to look into it.

Philip Grant in his usual meticulous way looked at the documentation and wrote:
The report that went to the CCG's Governing Body on 6 July includes the following important paragraph:

'Overall the service is seen by service users as a valued and forward thinking service model that supports the management of this long term condition, in an area of particularly high prevalence. However, the agreed Key Performance Indicators (KPIs) demonstrate a level of performance that requires improving. The service provider has cited a number of operational issues which has adversely impacted on performance and delivery of the KPIs.'

The first sentence confirms that the project, which had only been running for a year, was already providing a very valuable and worthwhile service to the people who needed it most.

The second sentence refers to the failure to meet some of the "Key Performance Indicators", showing that the service needed to be improved, while the third sentence shows that there were reasons to show why these KPI's had not been met in the first year.

Given the positive impact of providing the service in its "start-up" year, it is difficult to understand why it was not given at least another year to make the improvements that were needed. Instead, the CCG's Executive recommended, and the Governing Body accepted, the following option:
'Not to extend the pilot but explore alternative sustainable models for care for example a peer support model with Brent Council or the use of the PAM tool can be explored to support this cohort of patients.'

It appears that the CCG wants to pass some of its own responsibility for (and cost of) the care of sickle cell sufferers onto Brent Council, whose services are already stretched, without consulting with or considering the needs of 'this cohort of patients'.
Nan Tewari, referring to the last paragraph, responded:
A fellow patient rep who attended the CCG meeting said afterwards, that the Brent Council public Health rep on the Governing Body said flatly that the council had no money to support a project.
This issue, which disproportionately affects Brent's Black Caribbean and Black African population, is one that could cause massive disaffection.  The CCG's decision needs to be reviewed, proper consultation put in place and an independent Equalities Impact Assessment carried out.

Incidence of sickle cell trait is approximately 1 in 4 West Africans and 1 in 10  Black Caribbean.

The Brent Patient Voice submission to the CCG can be found HERE

The Brent CCG Governing Body papers can be found HERE


  1. Hey we got a judge on our side. Cool man.

    1. Someone's done their research (unless there's another judge somewhere out there expressing an opinion)!

      Just for everyone else, His Honour Peter Latham........
      [who wrote the Brent Patient Voice submission that Martin has linked to above] a retired circuit judge.

      His best claim to fame has to be that Brent CCG turned him down for membership of their Engagement and Equality Committee.
      I expect they though him underqualified.

    2. Judge Dredd.

  2. I am exceedingly impressed by the Brent Patient Voice submission to the CCG.
    His Honour, Peter Latham, has made a compelling case for the suspension of the decision to withdraw funding from the Brent Sickle Cell Project and for correct procedure to be followed, at the very least.

    It greatly disturbs me that Brent CCG can be so cavalier, in ignoring legal protocol.This has to have been done either wilfully or out of ignorance. Whichever way, this is gross ineptitude and Brent CCG needs to be held to account.

    The Brent Sickle cell Project is highly likely to reduce hospital admissions, in the medium and long term, if it is allowed to develop over a reasonable period of time and if it is given the required resources. It is 'cheap at the price', How short sighted of the CCG to say they are to withdraw funding and how inhumane.
    The project also has wider benefits, as illustrated in the submission by Brent Patient Voice, but then Brent CCG has no interest in these.

    If Brent CCG cannot afford the small budget for the Brent Sickle Cell project, I suggest it's membership voluntarily reduces it's own generous remuneration, until it can be seen to earn it.

  3. One might legitimately wonder about what criteria were involved in setting the Key Performance Indicators, who had overall responsibility for creating them, whose judgement was called upon when setting their tolerances, whether they are subject to any sort of periodic review and/or adjustment and who evaluates the effectiveness of the project.

    When you add in the CCG person's general non attendance at meetings, together with the alarmingly contradictory suggestion that, despite how well its working we're going to shut it down anyway, a less kind person might be moved to consider the possibility that this project to help black people, was deliberately set up to fail.

    Just a thought...

    1. ......and a very well considered thought it is too, Anon at 02.39.

      I'm afraid the CCG has ignored a basic tenet of thrid sector vworking, i.e. that community development and capacity building must go hand in hand with funding in order to achieve sustainability.

      It is a priority of NHS England to work with its 'voluntary sector partners' to deliver sustainability and transformation together with various integrated health and social care initiatives.

      As a health rep colleague put it so well-
      "Brent CCG can't even run a whelk stall and its now attempting to take over Billingsgate."

      Says, it all really.

    2. I have had a private response in agreement with the Anon 02.39 point about black projects being set up to fail.

      Whether this is entirely the case or not - and a number of other multi-racial, local projects are also disaffected with the way in which they have been treated - the inescapable fact is that inadequate public administration [and I put it no more strongly] alway has a disproportionately adverse effect on the most deprived communities.

  4. It is likely that many more people also see it the same way, that black projects are viewed dissmissively, at best, or at worst, deliberately mishandled, with a view to showing their progress in an unfavourable light, or to shutting them down altogether.

    Both are predicated on the expectation that the target community will fail to mount any kind of meaningful protest - usually because of being prisoners of the system. Instead, it will collectively roll its eyes, perhaps moan a little and then continue as usual, taking in its stride the misfortune that always seems to be visited on the most deprived sections of any society.

    Be careful though - the deprived sector is expanding, very soon to include a neighbourhood, a street or a house near you. Soon the expression, 'we're all in it together' will connote something entirely different, so be warned.

    In the famous words of Martin Neimoller, clergyman during the Second World War:

    First they came for the Socialists, and I did not speak out - Because I was not a Socialist.

    Then they came for the Trade Unionists, and I did not speak out - Because I was not a Trade Unionist.

    Then they came for the Jews, and I did not speak out - Because I was not a Jew.

    Then they came for me - and there was no one left to speak for me.

    Today's municipal library, swimming pool and health project, is tomorrow's entire social security protection.

    Pay attention...

  5. Might this have played out very differently had it been a disease affecting indigenous northern Europeans?

    Well, someone had to ask.


    1. Dear Kalpna,

      Your rhetorical question raises a very serious issue that is highly pertinent to both the Brent population in general and to sickle cell sufferers in particular.

      The point has been well articulated in another contribution stating that this is Harlesden, not Hampstead.

  6. Wembley Matters.
    Sickle Cell Matters.
    Black lives MATTER.

    1. ....a fitting juncture I think, for me to extend my appreciation to Martin Francis for giving this topic a public platform on his Wembley Matters blog.

      Thanks, Martin.

  7. I had a read of paper 16 and didn't see any race relations or equality implications recognised by the CCG. Isn't this needed?

    1. The equality implication is this is a project for black people. End of.

  8. As people don't look too deeply into it, the CCG is probably just hoping to get away with it.

  9. I trust that common sense will prevail, and that the funding will be restored in full. Society is what we make it, and it is about how we support those who need it, when they need it. Today we are the supporters, tomorrow we may be those in need of support.

  10. I'm new to all this so struggling to understand what's been happening. This project hasn't got through to GPs as much as the CCG wanted. The CCG is on a joint monitoring steering group with the ptoject. The CCG is made up of GPs. GPs are now in charge. OK I give up. I'm still struggling to understand what's been happening.

  11. Trying to be as succinct as possible, I would like to air the following.
    The impact
    This is a significant issue to the public health of Brent as Haemoglobinopathies, of which Sickle cell anaemia is just one type, affect a greater proportion of the population than is apparent by only focussing on those affected by Sickle cell.
    Financially, this is not a large amount for the CCG compared to other pilots/ projects that it funds, yet the potential benefit to a hard to reach and vulnerable group of people is immense.
    The Timing
    A '3yr pilot' should not be expected to produce sufficient evidence in less than a third of the allocated time. Presumably that is why the initial agreement was for a 3yr pilot, rather than a 1yr pilot??
    Any long-term Condition requires both a long term view and funding, in order to see the benefit of a new initiative.
    In long-term conditions, improvements inevitably take a longer time!
    The judgement
    Given the teething problems of this pilot and the understandable effect this had on its attainment of the KPI (key performance indicators), yet the positive trajectory of the service now that the staffing issues have improved, surely there is no valid reason for ending the Pilot early and the decision should be reconsidered

    1. I fully support the good sense and fair-minded comments of Anonymous (25 August at 14:02) and Nicola Claire (24 August at 10:24).

      The Brent Clinical Commissioning Group have got it wrong by deciding to stop funding for the Brent Sickle Cell Project, and the sooner they realise that and reverse their decision, the better for the whole community.

      And, by the way, it is not just the 'black community' which has been angered by the threat to this project - the box which I tick whenever I have to fill out various NHS (and other) forms is "White British" [which like every other artificially labelled category of people in our beautifully diverse borough is an ethnic minority!].