Bravo! Sickle Cell Society's enormous achievements recognised with national award

Wembley Matters some time ago covered  the campaign against the Brent CCG's decision to end funding for the Harlesden based Sickle Cell Society's local  advice and support project LINK  so I am delighted to post this news direct from the Society's website:

We have beaten more than 350 organisations from all over the UK to be one of the eight winners of the 2018 GSK IMPACT Awards, a national award that recognises charities that are doing excellent work to improve people’s health and wellbeing. We received £30,000 in funding as part of the prize, as well as expert support and development from The King’s Fund at a ceremony held at the Science Museum in London on the 17^th May, along with seven other GSK IMPACT Award winners.

An estimated 15,000 people in the UK have sickle cell disorder (an inherited blood disorder mainly affecting people of black African and African Caribbean heritage). The condition can cause chronic fatigue, pain, damage to vital organs and leads to early mortality.

The award recognises both our community-based services and our influence on national policy. Lisa Weaks, Head of Third Sector at The King’s Fund, said:

One of the impressive things about the Sickle Cell Society is that it is offering services at a community level but is also able to influence national policy. It has been instrumental in establishing national standards for the care of people with sickle cell disorder while ensuring these are firmly rooted in community needs.

Our other services which were praised include our national telephone helpline which offers support and information, our mentoring scheme for younger people with the condition and our Breaking Down Barriers outreach programme which targets people from Portuguese-speaking and French-speaking communities.


They also noted our guidelines on blood transfusions which we produced in 2016 that focused on improving the experience of people with sickle cell disorder by causing less discomfort and improving efficiency. It is estimated that this could save the NHS £13 million per year. As well as this, they praised our work to improve screening of pregnant women at risk of having a child with sickle cell.

The Society’s Chief Executive, John James, said:

I was absolutely delighted to find out we had won. Over the past five years we think we have been doing great work with patients, their families, and our partners in the NHS, NICE [National Institute for Health and Care Excellence], and industry and so it is really good for that to be recognised.

It is fantastic recognition that we are doing good work for people with sickle cell disorder, and I am sure it will further enhance our reputation in the sector. For funders it sends the message that we are delivering value for money. The leadership support will also help us to chart the next stage in our journey.

Developing leaders in the charity sector is an important aim of the GSK IMPACT Awards programme, which has now been running for more than 20 years, and the Society will have access to training and leadership development tailored to our needs. We will also be invited to join the GSK IMPACT Awards Network, a national network of almost 80 award-winning health and wellbeing charities working together to develop their leaders, find new ways of working, and support others.

Thank you to all those who support our work and who work tirelessly to help improve the lives of those living with sickle cell.

You can find more about the awards here: LINK

A spokesperon for Brent Patient Voice said:

Brent Patient Voice (BPV) is delighted to congratulate the Brent-based Sickle Cell Society on being one of eight national winners in the GSK Impact Awards 2018, along with a prize of £30,000. This was in recognition of its work with the local sickle cell community and its influence on national policy. We find the award rather ironic in the light of the withdrawal of funding by Brent CCG in 2016 for the Society’s promising local support and advice project - a decision strongly contested by BPV.

Help raise funds for Brent Sickle Cell Support Group on Sunday

In the light of recent cuts to essential services for those with Sickle Cell Disorder within Brent, urgent financial aid is needed for Brent Sickle Cell Support Group.

This group was formed over 31 years ago, by mothers wishing to share their experiences, offer information, advice and a wealth of understanding, to others in similar circumstances. So that they did not feel alone and overwhelmed struggling to understand the condition and the impact it would have on their lives.

Since then, they have grown with the help of wonderful volunteers and have acted as a patient advocate and liaison with the NHS, they have supported families in hospital, and offered respite breaks for parents.

They run an annual summer day trip for families, fully subsidised by the Brent Sickle Cell Support Group to theme parks and seasides across England. Over 900 trips in total. 

They also host a Children's Christmas party, attended by over seventy children and their families.

To continue this invaluable service in the community and to enable outreach education, Brent Sickle Cell Support Group will be doing a fundraising walk across all Brent parks, on Sunday April 30th 2017, starting at 9am in Barham Park. 

They will walk around each park, then continue on to the next. This will include King Edward VII Park, Wembley; The Welsh Harp, Gladstone Park and Queens Park, until they reach their end point, Roundwood Park where there will be a picnic held at the finish for all families and supporters. Lunch will be provided for those who participate on the walk.

We need YOUR support! YOU can really make a difference!

Cheques to be made out to Brent Sickle Cell Support Group or you can make a donation on the day at Barham Park or Roundwood Park.

For more information, or if you would like to participate or volunteer please contact 07947306733

Dawn Butler MP expresses 'deep concern' over plans to decommission Brent Sickle Cell Support Service

Dawn Butler MP for Brent Central has added her voice to those challenging plans to decommission the Brent Sickle Cell Advisory Support Service (BSCASS). 

She has written the following letter to the Chair of Brent Clinical Commissioning Group (CCG), Dr Effie Kong, calling on her to urgently reconsider the decision.

 

Dear Dr Kong,

I am writing to put on record my deep concern at the recent decision taken by Brent CCG to decommission the Brent Sickle Cell Advisory Support Service (BSCASS).

BSCASS provides a thoroughly vital and valued service to the communities of Harlesden and Stonebridge and beyond which has a high prevalence of sickle cell sufferers. This is a poorly understood condition and services such as BSCASS are vital in helping sufferers live normal and healthy lives.

It is also vital in providing assurances to sufferers who are discharged from hospital, that extra help prevents sufferers often immediately returning into hospital, for example if a person’s house is too cold.

In particular, I would like answers to the following questions:

What consultation, beyond the reported meeting due to take place on the 7^th September 2016, has been carried out with sickle cell suffers and service users within Brent?

Has an equality impact assessment been carried out ahead of the decision to decommission this service? And if not, why did you not feel it appropriate to do so?

Brent CCG’s own report suggests service users will be ‘signposted to advocacy and advisory services within the borough’. What assessment has been made of the travel implications of decommissioning for residents of Harlesden and Stonebridge where a majority of local sickle sufferers are based?

Have you conducted a comprehensive cost-benefit analysis in relation to the decommissioning of this service? I understand that the CCG acknowledges a reduction in admissions as a result of the service. Will you also publish any data you have on this point?

I should declare an interest as an MP who is sickle cell trait and my brothers have the full blown disease I understand the complicated needs around sufferers, I have always been so impressed with the service provided by Brent, recently the erosion of this service starting with the relocation of the services from Central Middlesex hospital has been extremely disappointing.

You have no idea how painful it is to sit when you are in crisis and to expect someone to travel an extra 60mins for help is very cruel. The decommissioning of this service adds further to the existing health burden of my constituents and represents a growing inequality in the provision of healthcare services within the borough.

Finally, if this is a question of fiscal constraints then I believe we need to look at new and innovative ways to ensure the preservation of this service. I would welcome the opportunity to meet with the CCG and community activists to explore alternate funding arrangements that would deliver this outcome. I am pleading with you to reconsider your decision.

I look forward to your reply,

Dawn Butler MP

Labour Member of Parliament for Brent Central


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.

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 20^th 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

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: breccg.brentenquiries@nhs.net
 
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