Wednesday 17 August 2016

Save the Brent Sickle Cell Project

Personal guest blog by Nan Tewari

CVS Training Room, Ground Floor
5 Rutherford Way, Wembley, HA9 0BP
Thurs 15 Sept, 1 p.m. to 3 p.m.

If you are a sickle cell patient, Brent CCG cordially invites you to trek to Wembley Park for a meeting to deliver personally, the news that it is about to close the BSCASS (Brent Sickle Cell Advisory Support Service) project 2 days after the meeting.

Brent CCG regrets it has no money (or thought) to schedule the meeting in Stonebridge or Harlesden for the convenience of a vulnerable group of patients.

Brent CCG further regrets it sees no need to include people who are at high risk of developing sickle cell either.

Brent CCG is pleased however that it does have the money to spend on expensive solicitors to fend off attempts by Brent Patient Voice to ensure the CCG complies with proper contract termination processes;  to explain why it had not undertaken an Equality Impact Assessment before making the decision to cease funding;  to give an undertaking that it would put an alternative support service in place to patients who have already seen their service relocated to Northwick Park, a mere 2 bus rides away, and so on and so forth.

The CCG recognises the project has been effective in reducing hospital out-patient and in-patient admissions.  The Sickle Cell Society has the provider contract for the BSCASS project.  The annual cost is £70,000 which pays for 2 workers.  The project was originally planned (and costed) for 3 years having started in May 2015.  

Part of the contract included an agreed joint governance structure through a steering group.  The CCG senior rep only ever attended one meeting.  The CCG had voiced no dissatisfaction with performance yet suddenly now, it is concerned that the service is not reaching enough patients.  All voluntary sector projects take time to ramp up having first to recruit staff then to set the service up.  The CCG however, seems to believe that setting up a community project just requires the handing out of money with no follow-up responsibility for any of the community development or capacity building activity necessary to get the new service going.  

Contrast this with the help and support the CCG gives to the Royal Free Hospital as provider of the outpatient cardiology service to help the RF meet its KPIs (key performance indicators) and the RF’s continued failure to fully deliver.  Better still, more than a year after the CCG was set up it was still using it’s newness as an excuse for poor performance in several areas!  Different rules for them it seems.

Re the 15 Sept meeting (no consultation from the CCG on date and time, surprise, surprise) I expect Brent CCG would appreciate some help on how a parent is meant to leave Wembley Park at 3 p.m. to get to Harlesden in time to pick children up from school.  Contributions can be e-mailed to:
Not sure whether the CCG will listen to sense re the meeting date/time, participation, or anything else, so do watch this space for any updates


Nan. said...

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.

Anonymous said...

Thank you for publicising this Nan.
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.

Anonymous said...

We need this CCG behavior debated in Parliament. Especially if other CCG's are also behaving in this shameful way.
Not daft as it sounds.
It only requires 100000 signatures to be collected and offers the mechanism to make that happen.

Leroy Decosta Simpson said...

I would like to read the paperwork on how this decision was made and by whom.
Then I will get one of my big bwoys to look into it and write a letter for me

Nan. said...

Dear Leroy,

Herewith a Brent CCG link to the Governing Body meeting of 6 July that made the decision.

Below that I also attach a Brent Patient Voice link to its own paper in response to the CCG decision.

Glad to have the 'big bwoys' on board!

Philip Grant said...

Thank you for giving this issue publicity, Nan, and for providing a link to the relevant documents.

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. said...

Quite right, Philip, on all fronts.

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.

Anonymous said...

Is it because I'se black?

Anonymous said...


Hope this helped...

Anonymous said...

"Brent CCG regrets it has no money (or thought) to schedule the meeting in Stonebridge or Harlesden for the convenience of a vulnerable group of patients."

Roughly translated:
Brent CCG considered that the path of least least resistance would be to encounter...the least possible resistance, and scheduled its meeting time accordingly.

The reality, unfortunately, is that policies regarding debilitating health conditions, are seldom formulated by people who either have those conditions, or by people who have to spend days out of their week, being shunted from one clinic to another, sitting hours in a hospital waiting room, in order to have their hurried eight-or-so minutes with a consultant.

Until this changes - and there is very little prospect of that - the suffering of the victims of this disease will find unfavourable balance against the possibility of someone, or some committee, being seen to be saving money for their organisation's budget.

Harlesden was never Hampstead. This isn't rocket science.


Anonymous said...

Irie they would never close down a Project in Hampstead.

Anonymous said...

Where is our MPs?

Anonymous said...

It appears that the CCG is only interested in cost and not people and their health issues. This behaviour is very much about targets and short term results, this why we have a failing NHS - too many results based approach and no genuine care.

Nan. said...

Great sentence Ravi, that neatly sums up the CCG's entire PPI (public and patient involvement) strategy -
"Brent CCG considered that the path of least least resistance would be to encounter...the least possible resistance, and scheduled its meeting time accordingly."

Nan. said...

Anon 20.10
Just to put that into perspective, the CCG calmly squandered £50k (of OUR money) on consultants, Coulter and Co. to get rid of the challenging Engagement and Equality Committee.
A case of 'if you don't like the message, pay a management consultant to shoot the messengers for you'!

Anonymous said...

They wouldn't shut down the Cancer clinic but anything for black people they closedown without thought