Search Results for: Contaminated Blood Memorial Fund

Contaminated Blood Memorial Fund: New Events Page

CBM Fund Banner

 

CB

The Contaminated Blood Working Group aims to create a lasting memorial for those who received contaminated blood or blood products in the course of medical treatment. Follow their progress at: https://www.facebook.com/contaminatedbloodmemorial/

For details on how to donate to the fund, please see: https://www.justgiving.com/teams/cbmemorialfund

 

 

For more information on the Contaminated Blood Memorial Fund and events, please contact Leone: cbmemorial23@gmail.com

 

Upcoming Events

28th May: Edinburgh Marathon Festival Runs

3rd July: Nicola and Lisa’s Skydive

12-19th August: Charity Shop

Nov/Dec: Donate instead of sending Xmas cards to f&f on social media

May 2017: Charity Shop

Events: Dates to be confirmed

Lorna and Charlotte’s Skydive

Anne’s Tea Party

Clubbathon

580363_1591254227786714_5465985284742626723_n12821417_1591254224453381_6137230734763536148_n

 

 

 

Contaminated Blood Memorial Fund Launched

 

CBM Fund Banner

At a private memorial event in Edinburgh today we supported the launch of the Contaminated Blood Memorial Fund.

The Fund is bringing bereaved families together to plan, and raise money for, a lasting memorial to those who have died as a result of the contaminated blood disaster in Scotland.

The families behind the memorial explain what they hope to achieve saying,

We would like your help to create a lasting memorial to those we have lost because of the contaminated blood disaster.

It will be built in recognition not just of our personal losses, but of the collective losses we all share.

We’d like it to be something beautiful, evocative and have significance for us all.

If you’d like to get involved in planning the memorial or raising funds please contact the families on cbmemorial23@gmail.com

If you would like to contribute to the costs of raising a memorial to those we have lost in Scotland there are two ways to donate.

Haemophilia Scotland is facilitating the Memorial Fund. 100% of the money you donate will go towards the fund. Haemophilia Scotland will not make any administration or management charges. The project belongs to the affected families themselves.

UK Contaminated Blood and Blood Products Inquiry and Meeting

 

britain

Since Haemophilia Scotland was established we have tried to report back as quickly as possible about all of our activities.  Therefore, we wanted to keep you up to date with developments in the last couple of weeks since the UK Inquiry into the contaminated blood and blood products disaster was announced.

We received a copy of a letter from Diana Johnson MP, Co-Chair of the All Party Group (APPG) on Haemophilia and Contaminated Blood to the Prime Minister which raised three main issues,

  1. That the Department of Health are not the appropriate department for overseeing the establishment of the Inquiry.
  2. The need for clarity on the timetable for establishing the Inquiry.
  3. The need to establish a safe repository for evidence which could be of interest to the Inquiry.

In our reply we supported these calls and provided information from our experience of the Penrose Inquiry to support her.

The Department of Health called a consultation meeting at short notice early in the morning in central London.  The meeting was boycotted by the vast majority of campaign groups including The Haemophilia Society and Haemophilia Wales.  Haemophilia Scotland neither joined the boycott nor attended the meeting.  We are anxious to have a substantive conversation, on the powers and terms of reference of the Inquiry, but is clear that the Department of Health cannot be the responsible Department.

We have had a meeting with the Scottish Infected Blood Forum (SIBF) and agreed to work as closely as possible together with them, and other independent Scottish campaigners.  We hope we can build on the relationships forged following the Penrose Inquiry to have a strong collective voice highlighting the Scottish dimensions to the establishment of the UK Inquiry.

To give everyone affected in Scotland a chance to feed into our collective thinking we are holding a joint members’ meeting at 2pm on Saturday 26th August in the Lomond Room of the Edinburgh Park (The Gyle) Premier Inn.  This is a private meeting and so you must register if you want to attend. The meeting will discuss what lessons can be learnt in from the Penrose Inquiry and what we’d like to see in the terms of reference for the UK Inquiry. We have also jointly written to Nicola Sturgeon MSP, First Minister, to ask her to ensure that Scottish Government engage with the Inquiry and urge the UK Government to work with those affected.

We joined a telephone conference call arranged by Diana Johnson MP and Sir Peter Bottomley MP as Co-chairs of the APPG.  The purpose of the call was to hear from the Bishop of Liverpool who offered to act as an intermediary with the Government.   The Bishop made it clear that he did not believe that the Department of Health were the appropriate part of Government to oversee the Inquiry. He also stated that he believed a proper consultation would take about six months. His remarks on timing are in line with the Government’s own guidelines on consultation.

Since the call, and following legal advice, some campaigners, have said they are not happy with this approach. They fear if the Bishop opens a dialogue with the Department of Health that could legitimise their involvement.  Haemophilia Scotland is keen to work with the Bishop to find a way to find an appropriate part of Government to conduct a meaningful consultation.

Both Haemophilia Scotland and the Scottish Infected Blood Forum have approached Patrick McGuire at Thompsons Solicitors about continuing to represent us and he has agreed.  Patrick and Thompsons bring the experience of having won a judicial review and secured a Public Inquiry and then representing the patient interest during it.  It is our hope that Thompsons will be included on equal terms with any law firms working on group actions.

Finally, the Scottish Contaminated Blood Memorial Fund is continuing to raise funds for a lasting memorial to remember those affected by the disaster.  Donations can be made online or by texting CBME23 and the amount to 70070. So, to donate ten pounds your text should read “CBME23 £10”.

Further Information

The House of Commons Library has produced two briefing papers on Public Inquiries which will help anyone who would like to understand the various options in more detail.

Joint meeting with the Scottish Infected Blood Forum (SIBF) a success

John Rice and Bill Wright working together

John Rice and Bill Wright, Chairs of the SIBF and Haemophilia Scotland respectively, joined forces to encourage everyone to register with the Scottish Infected Blood Support Scheme.

 

On 8 April 2017 we held our first every joint meeting with the Scottish Infected Blood Forum (SIBF). The SIBF campaigns on the contaminated blood and blood products disaster, regardless of the route of transmission, in Scotland. We wanted to come together to update members of both organisations on the current situation and give everyone a chance to have their say.

Tommy Leggate from the SIBF provided information about the new Scottish Infected Blood Support Scheme (SIBSS) and some of the work that the SIBF and Haemophilia Scotland have done together in response.

Leone Bissett spoke about the proposal for a memorial to those who had passed on as a consequence of the disaster.  She urged everyone to support the Contaminated Blood Memorial Fund. The memorial will be a lasting tribute to those who died as a consequence of the disaster. The location needs to be accessible preferably in Edinburgh and durable enough to be withstand any possible weathering or other damage. It needs to be physically accessible to all ages and physical capabilities and will include words to explain what happened. Individual names need not appear but there may be ways of including individual messages. The style needs to be clear that it denotes a disaster but is also +ve and forward looking. A budget of £45,000 might be needed and so far £8,500 had been raised. It was agreed that the project had full support of those attending and agreed that the small steering group who had driven the project to date should continue to lead it.

There was then a discussion about what still needs to be done and how the new scheme could be improved. This discussion identified a number of potential issues including,

  • The availability of income top-up support. Grants will be reviewed in Oct.
  • The availability of lower value one-off grants from the support and assistance grant fund.
  • Widow(er)s could choose a nominated doctor to help their case for gaining Stage 2.
  • The term ‘Sustained Viral Response’, rather than cure, is to be applied where new the viral treatments for HCV have been ‘successful’.
  • More case studies were needed to feed into the clinical review. For this, survivors access to their own or loved ones medical records might be necessary.
  • Some concerns / anxieties were expressed about the application process. The first port of call should be NSS. However there was concern expressed about the telephone manner of one NSS response to a query.
  • The phrase on one of the forms ‘if you really need it’ was regarded as insensitive.
  • It was agreed to invite NSS to the next meeting in the autumn.
  • It was noted that ‘Stage 1’ widows in particular were missing out.
  • Concern was also noted about the composition of the Appeals Panel.
  • All agreed that a future guarantee on the level of payments as a minimum is needed. It was agreed to write to all the political parties seeking their agreement to maintain the levels of payments set so far as a minimum.
  • It was noted that Stage 0s may have particular problems in securing access to the scheme due to missing medical records.
  • The issue of the widows pension payments not being made to those who have remarried.
  • The cross border issues caused by the requirement that people were infected in Scotland and lived in Scotland when they first applied for support.

Although not know at the time of the meeting, the BBC were working on a Panorama programme to highlight the impact of the disaster and some of the evidence of wrong doing.  The programme, Contaminated Blood: The Search for the Truth, was aired on 10 May 2017 and can be viewed below. It will be available to view for 12 months if you missed it when it went out.

Mark get the press for fundraising run

Mark boosts blood fund - Blairgowrie Advertiser

Fantastic work Mark! Well done and thank you!

Mark Scott has had some fantastic coverage in the Blairgowrie Advertiser.

He raised nearly £130 for our Contaminated Blood Memorial Fund as part a fantastic TEAMophilia effort at the Edinburgh Marathon.

Mark’s JustGiving page is still live if you’d like to give and help him get raise over £130.

Thank you Mark, the other runner and everyone who has given so far.

Find our more about fundraising for Haemophilia Scotland here.

Emotional day for #contaminatedblood families

Flowers 005

Today, there are two important events for individuals and families affected by the contaminated blood disaster.

Firstly, it is the funeral of one of our members.  He fought a long battle with hepatitis C including through a life saving liver transplant.  His cheerful positivity and his triumphs against the virus, and its impacts, over many years were truly inspirational.  He was a valued contributor to our hepatitis C information day last year where he generously shared his experiences. Our thoughts are with his loving family and many friends today. He will be deeply missed.

Before he died he received the news that the Scottish Government would be implementing the Scottish proposals to improve the financial support available to those affected by the Scottish contaminated blood disaster.  The other event today is about trying to make sure others battling the viruses can receive similar news.

There are 20 people living is Scotland who were infected during the disaster in England.  In addition, there are five bereaved families in Scotland whose loved one died following an infection in England.  These individuals and families will not be entitled to the new, Scottish payments. Instead they are reliant on the outcome of the financial support review in England.  In addition to a questionnaire, which anyone with a view on the English proposals can complete, their will be a backbench debate and protest in Westminster today.  You can watch the debate live online. It is currently expected to start at 3pm but it is subject to the rest of the business of the House of Commons staying on time.

This slideshow requires JavaScript.

Haemophilia Scotland will be responding to the consultation and has been providing information to Scottish MPs in advance of the debate to highlight the needs of our members who were infected in England.

Commenting in advance of the debate, Dan Farthing-Sykes, Haemophilia Scotland CEO said,

We are extremely concerned that the English proposals appear to be roughly half as well funded as those in Scotland.  Are members who were infected in Scotland should be able to expect at least equivalent support from the Westminster Government – particularly the key events of this disaster considerably predates devolution and the creation of the Scottish Parliament.

We are concerned that the English proposals will amount to cuts in support for those who are most ill and those who are on the lowest incomes.  If the index link for those who receive on-going support is broken then within 5 years those whose health has been damaged the most will be worse off.  Similarly, if discretionary grants are abolished then those whose who have the least will be hit hardest.  The English proposals also contain no improvement in support for widows and widowers, many of whom have had to give up careers as well as nurse their dying partners.  These are the sorts of concerns we hope will come out during the debate and force the Department of Health (England) to bring forward significantly improved proposals.

I hope the protest outside parliament today, organised to coincide with the backbench debate, will help make it clear to MPs of all parties that the proposals being consulted on by the Department of Health fall woefully short.

Baroness Lynne Featherstone has posted a blog to coincide with the debate and describes the impact the disaster has had on her own family.

Haemophilia Scotland is also working with bereaved families in Scotland to raise money for a lasting memorial to those taken by the contaminated blood disaster.  All donations towards this worthy cause will be gratefully received.

CBM Fund Banner

Contaminated Blood Memorial Event fitting tribute

Group 001b.jpgWe were honoured to be joined by bereaved families from all over Scotland at the Contaminated Blood Memorial Event on 2nd March 2016 at the Augustine United Church in Edinburgh.

We were also pleased to welcome representatives from other support organisations, including The Hepatitis C Trust, HIV ScotlandThe Scottish Infected Blood Forum, The Haemophilia Society, Haemophilia Wales, and Thompsons Solicitors    The Scottish Government were extremely well represented by the First Minister, Nicola Sturgeon MSP, the Deputy First Minister, John Swinney MSP, and the Cabinet Secretary for Health, WellbeingFlowers 002, and Sport, Shona Robinson MSP.  We also welcomed our longtime supporter Richard Lyle MSP.

The event was presided over by Richard Holloway and featured moving readings from, or suggested by, the bereaved families.  We also had music from
our own Andy Gunn and from Wendy Taylor.

We know that ill health and the enduring stigma of the infections meant that many people were with us in spirit but not able to attend in person. While there was no filming or photography during the event, we hope the following links will give a sense of the occasion.

This slideshow requires JavaScript.

You can donate to the Contaminated Blood Memorial Fund online or by texting CBME23 to 70070.  The default text donation is £10 but you can give more or less by adding an amount to your text.

We are very grateful for the coverage that the Contaminated Blood Memorial Fund has already received in the Scottish media.

Contaimnated Blood Memorial Service

Group 001b.jpgWe were honoured to be joined by bereaved families from all over Scotland at the Contaminated Blood Memorial Event on 2nd March 2016 at the Augustine United Church in Edinburgh.

We were also pleased to welcome representatives from other support organisations, including The Hepatitis C Trust, HIV Scotland, The Scottish Infected Blood Forum, The Haemophilia Society, Haemophilia Wales, and Thompsons Solicitors The Scottish Government were extremely well represented by the First Minister, Nicola Sturgeon MSP, the Deputy First Minister, John Swinney MSP, and the Cabinet Secretary for Health, WellbeingFlowers 002, and Sport, Shona Robinson MSP. We also welcomed our longtime supporter Richard Lyle MSP.

The event was presided over by Richard Holloway and featured moving readings from, or suggested by, the bereaved families. We also had music from
our own Andy Gunn

We know that ill health and the enduring stigma of the infections meant that many people were with us in spirit but not able to attend in person. While there was no filming or photography during the event, we hope the following links will give a sense of the occasion.

This slideshow requires JavaScript.

You can donate to the Contaminated Blood Memorial Fund online or by texting CBME23 to 70070. The default text donation is £10 but you can give more or less by adding an amount to your text.

We are very grateful for the coverage that the Contaminated Blood Memorial Fund has already received in the Scottish media.

£7030 donated by Harburn Golf Club

Bill & Harburn Golf Club

Bill Wright (our Chair) accepts the cheque from Allan, Dougie, Linda, & Benny (right to left)

Haemophilia Scotland is immensely grateful to Benny, Dougie and Allan and all the members of Harburn Golf Club, after their recent amazing donation of £7030 towards the planned Contaminated Blood Memorial. We are delighted at this continued generosity from the Club and its’ members towards this fund. It sounds like the Texas Scramble for the golfers and the celebratory evening dinner was enjoyed by all.

We would also like to extend particular thanks to the many local businesses in West Calder who were so generous with sponsorship and support for the event; as were many other golf clubs across the country who donated prizes.

Huge thanks once again to Harburn Golf Club – this has really helped take the Contaminated Blood Memorial Fund much further forward towards its goal.

Merry Christmas and Happy New Year from Haemophilia Scotland

Christmas and New Year.jpg

The Haemophilia Scotland office is now closed for the festive period.  We will be open again on 3rd January.  At this time of year we are particularly thankful to the staff of Scotland’s Haemophilia Centres.  Many of them will be working throughout the Christmas and New Year to make sure that the vital treatment, care, and support they provide continues 356 days a year.

2017 has been an eventful year for us and the bleeding disorders community in Scotland.  Haemophilia Scotland has more members, more volunteers, and more staff than ever before.  We published the result of the Scottish Inherited Bleeding Disorders Needs Assessments which has helped us and the Scottish Inherited Bleeding Disorders Network focus on the needs of our community.

Our free children and families days have regularly had more than 100 people taking part and we have started our exciting new project for teenagers.  Women’s Group has launched the Quilting Project and announced it will be hosting the Women’s Booth at WFH Congress in May 2018.  It’s also been extremely welcome to see the Edinburgh Haemophilia Psychological Support Pilot rolling out to look at how the service could be provided throughout Scotland.

The Scottish Infected Blood Support Scheme has been launched which means that people affected by contaminated blood and blood products are getting more financial support than ever before.  2017 also saw the announcement of a UK wide Public Inquiry into the contaminated blood and blood products issue at which we hope to play our part in provide a strong voice for everyone affected in Scotland.  The Scottish Clinical Review Group has also started its work which offers us a real opportunity to make a strong case for more support for those in the chronic (stage 1) category including widow(er)s. Many members also achieved a sustained virological response as the result of treatment for Hepatitis C this year.

In our international work were delighted to announce that, following the success of our partnership with our friends at the Society for Haemophilia and Allied Disorders in Malawi, we are WFH HOT Twinning Programme members in partnership with the Kenya Haemophilia Association. This will be an exciting area of work for us over the coming years as we work together to build organisational capacity.

Thank you to everyone who has raised money for us this year too.  We’ve had everything from a fantastic charity gig in Thurso, to skydiving, and incredible range of other sponsored challenges. The money you raise makes a huge difference to a comparatively small charity like ours and we are incredibly grateful. A lot of you have also been raising money for the Contaminated Blood Memorial Fund for which we are also grateful.

We hope all our members, friends, and supporters in Scotland and around the world have an enjoyable Christmas and New Year.  We look forward to working with you all to achieve even more in 2018 and seeing many of you at our regular events.

None of the work of Haemophilia Scotland would be possible without the grants we receive from the Scottish Government and the pharmaceutical companies who produce the clotting products our members news.  We are very grateful for their ongoing support of our work.

 

 

« Older Entries