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.

Three worthwhile projects to get Brent Neighbourhood CIL grants

It is a pleasure to give details of three Brent projects that, subject to Cabinet approval on Monday, will receive funds from the Neighbourhood Community Infrastructure Levy. Cabinet has to approve any NCIL grants above £100,000. Extracts below are from the report to Cabinet

Citizens Advice Brent (CAB) 
 £248,000

CAB seeks to refurbish and transform its current premises to deliver a new Community Hub resource for residents of Brent. The Hub will be open to CAB partners and all residents of the borough; particularly the most vulnerable who form the majority of users. 


The refurbished hub will provide: 

·      Expanded space - the space will be reorganised to offer public access 
PCs, brighter and more inviting interview rooms and a welcoming 
reception area 


·      Reorganisation of facilities - including terminals for people to make 
online benefit and other claims, assisted by Digital Assistants to navigate 
a number of websites 


·      Improved facilities - this will create a pleasant working environment for 
users and staff and improve the client experience 


·      Improved Health & Safety- The refurbishment will make the premises 
fully compliant with Health & Safety and equality requirements; and 


·      Environmental efficiencies - The project will be energy saving and 
improve the office carbon footprint. 


CAB is based in the Willesden CIL Neighbourhood but provides services to all Brent residents. It is a registered charity (no. 1049632) and company (no. 3091835) where people access advice and support to manage a range of issues including welfare benefits, housing and homelessness, debt, 
employment and immigration. The Hub will also develop the skills of volunteers. 

The Sickle Cell Society 
£133,958

The Sickle Cell Society has operated in Brent for 40 years from 54 Station Road, Harlesden. This project aims to refurbish the current premises and create a new, fully accessible, ground floor space which will be used for sickle cell support and focus groups, events, and for individuals and families to drop- in for confidential support and advice. It will also be available for any local community organisations to meet. This will fill a local void in amenities for these groups. 


Works will include: 

·      Lease of the neighbouring ground floor shop space and connecting this 
new space to the existing ground floor space 


·      Developing the ground floor to offering expanded community access of 
the facilities; and 


·      Creation of a new modern ‘shop front’ across both properties which will 
help to enhance the visual appearance of Station Road. 


The Sickle Cell Society has secured the lease for 56 Station Road from its own resources and submitted a change of use application for the ground floor. Consent was granted in December 2018. 


The Sickle Cell Society is a registered charity (no. 1046631) and company (no. 2840865). The current headquarters play a key role in educating people about the sickle cell and management techniques. Services delivered from the building enable those affected to better support themselves, empowers carers and provide peer forums. In addition to local visitors, the expectation is that the refurbished premises will be used to host growing numbers of visitors from the wider London community, across the UK and other parts of the world 


 

St Catherine’s Hall 
 £150,000

St Catherine’s Hall, Neasden was burned down in a major fire in September 2018. Prior to that it offered one large community hall, which was used by seven regular hirers 


An insurance payment will fund the restoration of the building as it was. NCIL funds are requested to increase the capacity of the building to accommodate more spaces for local community groups and to improve the visual presentation of the building on Neasden roundabout. 


This project will provide the following additional facilities: 

·      Creation of a second floor - providing a second large flexible hall which can 
be divided in two with its own toilet and refreshment facilities 


·      Creation of a new toilet and refreshments facilities, which will free up one 
room for two new small group meeting rooms; and 


·      Creation of a visually striking foyer area which will make use of the hall 
easier but will also enhance the look and feel of the Hall site on Neasden roundabout. 


·      All the new spaces will be available for hire by local community groups seven days a week. 

The hall is based in the Willesden CIL Neighbourhood but the expanded community facilities will benefit the whole borough. 


NOTE

St Catherine’s are holding a community consultation on Saturday. The is the message that the vicar, Rob Harrison posted on The View from Dollis Hill Facebook LINK
Last September, St Catherine’s Church Hall was burned down in an arson attack. This year, we will be rebuilding it as a Community Hub for Neasden.

The key question is: what kind of Community Hub does Neasden need?

On Saturday 13^th March there is an open Consultation Day to hear and share suggestions about what kind of facility we should build to serve Neasden for the coming decades.

If you would like to take part in this consultation, please reply to this post. 

The Consultation day begins at 10.30am on Saturday, and will finish at 3.00. Lunch will be provided for those staying for the whole event.

The morning session will focus on the kind of building that Neasden needs. The afternoon session will focus on the kind of resources that will be needed in that building.

The voice of local residents is vitally important to helping us build what Neasden most needs.

He added the following note today:

A call to Polish and Romanian members of our community. 

At present, over 40 people of our local communities have booked in to take part in the Community Hub Consultation at St Catherine’s Church on Saturday (10.30am - 3pm). Looking at the list of names, there is no representation of the Eastern European communities who are an important part of our Neasden Community. As we seek to build a Community Hub for Neasden, it is important that as many local needs as possible are expressed and heard. If you know people who could bring a perspective from those parts of our community, I would be delighted to include them in our consultation.

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

Hospital Merger Plans Challenged

36 people turned up at the Sattavis Patidar Centre, Forty Avenue last night to discuss the proposed merger of Ealing and North West London Hospitals Trust (covering Central Middlesex, Northwick Park and St Mark's hospitals). This compared with 100 at the recent Ealing meeting and a 'client' base of 800,000 people.


Professor Rory Shaw, Medical Director, made the case for the merger. The organisational merger would enable the joint Trust to have larger specialist teams which would be more viable than the present small teams, enable shift-work to take place and would attract high calibre staff Economies of scale would mean the Trust could keep pace with developments by buying up to date equipment and make resources, including scanners and operating theatres 'work harder' and the buildings 'earn their keep'. 

He said that Northwick Park's  stroke care unit was a good example of the merits of large, centralised teams and had led to better survival rates and fewer cases of paralysis.


Although the Chair of Brent LINk (Local Involvement Network) had stipulated that the meeting was not to discuss services, Shaw said that the merger was being proposed against the consultation on the commissioning of services that would take place in Summer 2012.  The focus would be on prevention and long-term conditions and more care and treatment in the community. He claimed that the latter was bothe cheaper and more effective.


He said that the move was taking place as a time when there was a general recognition that bigger was better. Other speeches from the six suited males on the platform extolled the merits of 'an army of generic workers', with an implication that these might be volunteers, who could help patients at home with hospital-home transition. We were treated to the management  mantra 'Localise where possible, centralise where necessary'.


Challenged that the presentation had not mentioned the financial plight of the NWLH Trust and that the merger proposal was a cover for cuts, the platform said that there was a financial saving involved of £7m and that this was specified in the Business Plan. Savings would be made in management and through reduction in 'back office' costs. Asked if  'developing the estate' meant selling off prime sites, especially in the light of the apparent running down of the Ealing and Central Middlesex hospitals, they said that sell-offs were not in the Business Plan but 'there may be scope for that in the future'.

Carers criticised the emphasis on volunteers and a speaker from the Sickle Society was concerned about the speed of the changes and poor consultation with users. He said that there had not been sufficient consideration of the needs of people with Sickle Cell and Central Middlesex Hospital's historic role in providing specialist care.

The platform was challenged on the implications of patients having to travel further for treatment and concern that the disadvantaged population of South Brent would be further disadvantaged if Central Middlesex was run down. Health inequalities would increase. A speaker from the floor made a strong demand for a Equality Impact Assessment. Despite repeated requests the platform were un able to advise which bus patients should get from Harlesden to Northwick Park Hospital.

Behind it all was the implication that larger teams would mean each site would have different specialisms which would not be offered at other hospitals in the Trust. The platform argued that routine care would still be provided at each hospital. A question asking if the new arrangements would be able to cope with a 'major incident' in South Brent with its many railways, the North Circular, waste sites and commercial premises; was not answered.


Brent LINk will be putting together its response and you can contribute: brentlink@hestia.org Tel: 020 8965 0309. Brent LINk Unit 56, The Designworks, Park Parade, Harlesden, London, NW10 4HT

Harrow LINk will hold its own consultation:
HARROW LINk: Thursday 12 January 2012. Registration and refreshments from 5.30pm. Event starts at 5.50pm and will close at 8pm. Premier House Banqueting, Canning Road, Harrow, HA3 7TS. Places are limited. If you like to attend please contact Harrow LINk at info@harrowlink.org.uk
or call 020 8863 3355.


TIMETABLE
November 2011 Outline Business Case for merger signed off by NHS London
March/April 2012 Full Business Case approved by the Trust Boards and NHS London
May 2012 Submission for approval by Department of Health Transaction Board
July 2012 Merger takes places
Autumn 2012 Commissioning of Services

Shahrar Ali's report on the meeting is HERE

NEU's proposals to PM re schools and coronavirus

The National Education Union has written to the Prime Minister Boris Johnson, calling for the Government to close schools and colleges and protect vulnerable educators or those caring for at risk family members.

We are also calling on the Government to fund and plan limited school opening for the children of key workers, those on free school meals and other children in need.

Letter to the Prime Minister Boris Johnson

The Rt Hon Boris Johnson
10 Downing Street
London
SW1A 2AA
17 March 2020

Dear Prime Minister

We write again following your announcements yesterday and our letter of Saturday.

In that letter we pointed to an apparent contradiction between bans on large gatherings and a refusal to close schools.

We also said we thought that it was important to engage with all the science and appealed for more information to be released on the modelling and on the effects on vulnerable school and college teachers, other staff and parents.

We have not yet seen that further information.

You announced yesterday that vulnerable people are to confine themselves for 12 weeks from this weekend.

On our understanding this includes:

• pregnant women.

and those who are suffering from:

• chronic (long-term) respiratory diseases, such as asthma, chronic obstructive pulmonary disease (COPD), emphysema or bronchitis;
• chronic heart disease, such as heart failure;
• chronic kidney disease;
• chronic liver disease, such as hepatitis;
• chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), a learning disability or cerebral palsy;
• diabetes;
• problems with their spleen – for example, sickle cell disease or if they have had their spleen removed;
• a weakened immune system as the result of conditions such as HIV and AIDS, or medicines such as steroid tablets or chemotherapy;
• being seriously overweight (a BMI of 40 or above).

We assume that on this basis teachers and other school and college staff who have these conditions or who are caring for people with those conditions, or who are over 70 should self-isolate.

We intend to advise all our members in these categories or caring for people in them to stop attending schools and colleges from next Monday at the latest. Some will do so earlier.

We also assume that the children of parents with those conditions should also avoid school or college.
This will make the running of schools all the more complicated.

Given your failure to release modelling comparing different scenarios of school closures, we are now forced to call on you to close schools, at least for some time and at least in some areas.

We know that very many of our members who aren’t in the categories of heightened risk would be willing to volunteer to play a role in helping our society get through this crisis.

We suggest during a period of full school closure that teachers and school leaders could work on plans for more limited opening to:

• ensure that we can look after the children of parents who must do the work our society needs - including NHS staff, food and distribution workers, police, prison and fire brigade staff and those who are working to produce medical equipment, including hopefully industries being re purposed to produce ventilators; 
• ensure that children on free school meals or otherwise in food poverty can eat nutritious meals;
• support other children in need.

Of course, this could not be a full opening and it would mean substantial changes from the way schools are normally run - but we believe schools could be important community hubs. This in turn requires that SATs are abandoned and that you produce proposals on the inevitable widespread disruption to GCSE and A -level exams.

Supply teachers would also be willing to help in such ways and in any event need your support during school closure or self-isolation.

We look forward to your engagement with these ideas and we remain, as before, ready to meet with you and the Secretary of State for education.

Given the number of staff and pupils that will now be off school, teachers and leaders will simply have to exercise their professional discretion about whether schools and colleges open and what work is undertaken - and they should do so with your approval.

We will support them in so doing.

Yours sincerely,

Kevin Courtney and Mary Bousted, joint general secretaries, National Education Union

NEUBorisJohnsonletter 17March2020.docx