The sky’s the limit!

 

On January 6, 2018, Chris Bombardier proved that “ain’t no mountain high enough” for people affected by a bleeding disorder, having scaled Mt Vinson in Antarctica. It was the final mountain on his ambitious quest to climb the highest mountain on every continent of the world.

Chris became the first person with haemophilia to summit Mt Vinson in Antarctica and thus joined a group of just over 400 people who have accomplished the “7 Summits”.

Chris has smashed the stereotype that his condition has limited his lifestyle. Instead, he’s used it to show that he can lead a full, adventurous life. He’s a massive inspiration and we reckon Chris should try knock off the tallest mountain in the UK: Ben Nevis, right here in Scotland!

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Lessons to be learned for panel of Infected Blood Inquiry

Cabinet Office

Today, the Cabinet Office made a statement on the upcoming Infected Blood Inquiry.  They said,

As the Government announced last month, a full statutory inquiry into the infected blood scandal will be established under the 2005 Inquiries Act, and sponsored by the Cabinet Office. The inquiry will have full powers, including the power to compel the production of documents, and to summon witnesses to give evidence on oath.

We are today setting out the next steps.

The Cabinet Office has now completed its analysis of the responses to the consultation on the format of the statutory Inquiry into infected blood announced in July. In addition a series of roundtable meetings were held earlier this month with individuals and groups representing those affected.

The Government committed to making an announcement regarding the Chair of the inquiry before Christmas, taking into account the views we have received. We are therefore announcing today our intention to appoint a judge to Chair the inquiry. We will make a further statement on who that judge will be in the New Year and we will be discussing with them the composition of the Inquiry panel.

We would like to thank each and every person who took the time to respond to the consultation, and to share their views and experiences. We understand how difficult these issues must have been to describe and we are grateful for the frankness and honesty with which people have shared their experiences. The responses to the consultation have been carefully considered by Cabinet Office officials. We can assure the House and everyone who contributed that the findings will be passed to the proposed Chair to help inform the discussions regarding the draft Terms of Reference, on which we expect there will be further consultation.

In accordance with the Inquiries Act 2005, colleagues in the Devolved Administrations will be consulted as the Terms of Reference are finalised.

A further statement will be made in the New Year.

Haemophilia Scotland has responded by appealing for Inquiry Panel Members who are able to fully dedicate themselves to challenging role.

We have cautiously welcomed the UK Government’s announcement on appointment of  a chair and panel, stressing the lessons we learned from the six-year long Penrose Inquiry in Scotland.

Haemophilia Scotland Chair, Bill Wright, has said,

In view of the forced resignation of the First Secretary it remains vital that the right Chair and Panel are appointed to lead the Inquiry. When we recently met Mr Green and senior officials in the Cabinet Office it was evident that substantial work had been done but there were still significant decisions to be made. Given that under the Inquiries Act, there are very clear duties upon Ministers in reporting plans to Parliament, appointing a panel and defining Terms of Reference and a setting up date we trust that discussions to appoint potential Panel members are ongoing with Officials. We look forward to meeting with Mr Green’s replacement.

The Panel members and Chair need to be not only able, but also very willing, to take on a formidable task. It is therefore no surprise, from the experience we had in Scotland, that time is having to be allowed to ensure that panel members are not pressed into positions they are reluctant to accept. Instead they need to be willing to take on an onerous role and dedicate themselves to it over potentially a number of years without alternative distraction. We have waited decades for this Inquiry. We now need the best people to lead it, in terms of appointing Minister, Panel, Chair, assessors and supporting staff.

Today’s announcement makes the upcoming joint campaign meeting with the Scottish Infected Blood Forum on 20th January in Glasgow even more important.  The meeting will be the first opportunity affected people in Scotland will have to come together and discuss our collective view since the announcement.  If you are planning to attend please register so we can make sure we have a large enough room to accommodate everyone.

 

 

Merry Christmas and Happy New Year from Haemophilia Scotland

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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.

 

 

Joint Campaign Meeting in Glasgow on January 20

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Haemophilia Scotland and the Scottish Infected Blood Forum are jointly hosting a campaign meeting for anyone interested in the contaminated blood and blood products disaster in Scotland.

This will be a chance for people to come together where we will be discussing the below:

  • The Scottish Infected Blood Support Scheme so far
  • The Clinical Review Group
  • The leadership of the UK Inquiry

We will also include:

  • A report back from the December meeting in London with Damian Green
  • A response to whatever announcement we get before Christmas

The venue, Mercure Glasgow City Hotel, is located near George Square in the city centre and is accessible by train, bus or car.

Book your place now.

 

See you at our events in 2018!

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As Christmas and the New Year rapidly approach (blink and you’ll miss it!)  we’re thinking ahead to 2018 and have some dates for your diaries.

2018 will be a big year, particularly with the World Federation of Haemophilia (WFH) Congress being hosted in Glasgow in May. You can find the dates for Congress as well as the exciting events we’ve organised on our Events page. All of our events are FREE so we would love to see as many of you as possible at them in 2018!

If you would like to suggest an event or think there is something missing, just let us know. We want everyone to be part of the events programme.

 

Ground-breaking severe Haemophilia A gene therapy results offer hope of new future

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Today’s report, AAV5–Factor VIII Gene Transfer in Severe Hemophilia A, in the New England Journal of Medicine offers the prospect of people with severe Haemophilia A taking a single injection and achieving clotting factor levels of mild or moderate patients.  This could mean huge reductions in use of clotting factor replacement products.

Dan Farthing-Sykes, CEO of Haemophilia Scotland responded saying,

These results are a huge achievement and offer someone born with Haemophilia today the prospect of a life without regular infusions.  I am struck by the bravery of all of those who have volunteered to be part of this and similar gene therapy trials.  Without their courage the amazing results achieved in studies like this would not be possible. Our thanks and congratulations go to everyone involved in this important work.

Many Haemophilia Scotland members will be excited by the prospect of a step-change in treatment.  However, as with all new medicines, they will want to see these results repeated in larger studies and be assured that the treatment is as safe as possible, as well as being free from harmful side effects.

This breakthrough will require clinicians, patients, and Governments to work together to make sure patients are able to benefit fully.  We will need to know if the therapy will continue working for the rest of a patient’s life. What levels of standard treatment might still be needed to keep all patients bleed-free or to respond to trauma? Gene therapy might also require new and innovative funding models to make sure that all the patients who might benefit are able to access it.

Read more reactions at,

Meeting with Damian Green ‘positive and cordial’

Going in

Bill Wright, Chair of Haemophilia Scotland, and Lynne Kelly, Chair of Haemophilia Wales on their way into the Cabinet Office to meet The Rt Hon Damian Green MP, who is the minister responsible for establishing the contaminated blood and blood products public Inquiry.

Bill Wright, Chair of Haemophilia Scotland, today joined representatives from groups campaigning on the contaminated blood and blood products campaign issue across the UK in London to meet The Rt Hon Damian Green MP, First Secretary of State, to discuss the upcoming Public Inquiry.

There were two meetings (morning and afternoon) and organisations were limited to a single representative so that there would be time for everyone who attended to speak. Bill attended on behalf of Haemophilia Scotland in the afternoon meeting which included representatives from,

The meeting was told to expect an announcement on who would be the Chair and on any panel before Christmas.  No specifics on the Terms of Reference (ToR) were discussed but they are likely to be published in draft with the opportunity to comment on them in early 2018.  The Cabinet Office were asked to provide funding for the relevant legal teams to be able to assist affected people with feeding into that process.

Bill highlighted the importance of having a Panel as described by Section 3 (1) (b) of the Inquires Act as an Inquiry being conducted “by a chairman with one or more other members.”  This sort of panel would have shared responsibility for conducting the Inquiry and signing off the report (as detailed in Section 24 (4) of the Inquiries Act).  We consider this is vital to having a fast paced Inquiry with the appropriate expertise and openness while avoiding the difficulties we faced during the Penrose Inquiry.

To help emphasise the importance of engaging with all affected people around the UK, Bill also referred to Section 18 (1) of the Inquiries Act to argue for the proceedings to be streamed live online.  This is vital to make sure that those who cannot travel because of poor health, finances, geography, or other responsibilities can “see and hear a simultaneous transmission of proceedings at the inquiry.”

Commenting straight after the meeting Bill Wright, Chair of Haemophilia Scotland, said,

We had a positive and cordial meeting. Damian Green confirmed a Chair will be announced before Christmas but further members of the panel may not be announced until the new year.

There was general agreement on the pace of proceedings from now on. It was acknowledged that the next stage and the Inquiry itself must be opened up much more widely than those who attended. Much work remains to be done but this was a good step forward.

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Selfies aren’t as easy as they look when you are trying to focus on the upcoming meeting.

 

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