Author Archives: Dan Farthing-Sykes

A big THANK YOU to John Lewis Glasgow

JL Donation

We are extremely grateful for a big box of fantastic fabrics which will be used as part of the quilting project being launched by our Women’s Group on the 24th of September.

It was donated by the good people at John Lewis in Glasgow and will really get the project off to a flying start.

If you’d like to join us at the Scottish Quilt Championships and for afternoon tea then please register today.

UK Contaminated Blood and Blood Products Inquiry and Meeting

 

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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.

Shoals of people enjoyed our Shark Party

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Thank you to everyone who made the trip to come to our Deep Sea World Shark Party on Sunday.  We know several families travelled for hours for the chance to talk to other families with bleeding disorders… and come face to face with the sharks!

In fact we had well over 100 people on the day and the party room was always busy with people refuelling between reptile handling and the shark tunnel.  Next time it looks like we are going to need a bigger boat! A great problem to have for a rare conditions charity!

We are extremely grateful to all the staff at Deep Sea World who kept us well organised (we even had our own announcements) and gave some extremely informative talks. I know a lot of people really enjoyed their encounter with a corn snake or a bearded dragon. The staff were very impressed with how brave everyone was too.

If you’d like your photos from the day included in the slideshow above then please send them into dan@haemophilia.scot

 

UK Govt. announce Contaminated Blood Inquiry

Theresa May

Yesterday, the Prime Minister, Theresa May announced she would be holding a public inquiry into the contaminated blood disaster.

We’d like to congratulate everyone who has worked so hard over many decades to achieve this.  We know from our own experience of the Penrose Inquiry that there is a lot of hard work still to do but securing an Inquiry is a huge achievement.

Our Chairman, Bill Wright, has written to the Prime Minister today asking for clarification about the scope and remit of her Inquiry and how those affected in Scotland will be involved. We know that the Scottish Government are also seeking their own urgent clarifications.  A statutory inquiry would require the UK and Scottish Governments to work together but so far no discussions about achieving this have taken place.

In his letter Bill highlighted areas which were either not covered by the Penrose Inquiry or not covered is sufficient detail.  These are areas where the new inquiry might make a significant contribution to providing justice for people in Scotland.  There are lessons to be learnt from the experience of the Penrose Inquiry which must be considered to make the Prime Minister’s inquiry as effective as possible.

Meanwhile, Haemophilia Scotland will remain focused and committed to working for the continually improvement of the Scottish Infected Blood Support Scheme and to playing an active part in the Scottish Clinical Review Group chaired by Prof David Goldberg.

More information

Come to our FREE Shark Party on 16 July

 

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REGISTRATION IS NOW CLOSED

Since the last edition of The Wire went out, and the posters went up in Haemophilia Centres, excitement has been building about our Shark Party at Deep Sea World in North Queensferry on Sun 16th July (3pm).

Our last children and families event at Edinburgh Zoo was very well attended so book now to avoid disappointment. The Shark Party is free and includes something to eat and a tour of the aquarium.  That way everybody can see all the amazing sea creatures and come face to face with the sharks!

We’re looking forward to seeing you there. Our children and families events are a great chance to get to know other families affected by bleeding disorders.  If anyone in your family has a bleeding disorder then everyone is invited.  If you need any help with the travel costs then just get in touch with Dan in the office.  The events are very informal and friendly so we hope you can make it along.

REGISTRATION IS NOW CLOSED

 

Thank you for making our AGM such a success

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Thank you to everyone who braved the rain and winding roads to join us for our AGM at Loch Katrine this year.  We’re glad that those whose sat navs tried to direct them to  the bottom of the loch battled through.

It was fantastic to have such a mix of ages and experiences of bleeding disorders.  Doing something a bit different and more relaxed seems to have gone down well.  These are some of the messages we got afterwards.

Very informative, relaxed and friendly.

As always the kids were catered for, very family friendly.  Nice to meet up with familiar faces and meet new people.

Relaxed, informative, and interesting.

The meeting received a report on our activities from our Chair, Bill Wright.  In particular, he highlighted the good work going on through the Scottish Bleeding Disorders Network, including the needs assessment, and welcomed the launch of the Scottish Infected Blood Support Scheme.  He also reported on our very successful work in Malawi which really has saved lived.  He was pleased that our events have been well intended, especially the recent trip to Edinburgh Zoo.

Our CEO, Dan Farthing-Sykes, gave the financial report and explained how apparent surpluses would be offset in the next audited accounts due to changes in the way a grant from the Scottish Government is managed.

The AGM re-elected Hugh MacInnes, Lynn Fraser, and Nikki Gandy.  We were also pleased to strengthen the board with the election of Nancy Brodie who some people will already know from her work as part of the team at the Glasgow Haemophilia Centre.

Next year we are planning to hold our AGM the day before (19th May) the World Federation of Hemophilia Congress starts in Glasgow (20th-24th May).  We want to make it as easy as possible for people to attend both events.  We are hoping to provide hotel rooms in Glasgow for those who want to attend both events.  However, to do that we need to know how many people would be interested.  If you could register your interest, with no obligation, today it would be a huge help.

We are grateful to Alistair Yell for taking the best of these photographs used in this report.

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Sporadic CJD cases in the UK bleeding disorders community reported

CJD

A recent paper from the Centers for Disease Control and Prevention (CDC) covers the death of two people with inherited bleeding disorders from Sporadic Creutzfeldt-Jakob disease (sCJD) in 2014. Both of the people concerned were women. One had Type 3 von Willebrands and the other carried the Haemophilia B gene. These are the first deaths from sCJD in the bleeding disorders community anywhere in the world.

Most of the concern in the bleeding disorders community around CJD has been about variant Creutzfeldt-Jakob disease (vCJD). This is thought to be the human equivalent of bovine spongiform encephalopathy (BSE), known as mad cow disease.  Many of our members were informed in 2004 that they are at increased risk from vCJD for public health purposes.  This risk relates to being treated with blood products made from plasma donated by people in the UK who had eaten BSE implicated beef or went on to develop vCJD.  Although in 2008 vCJD implicated prions were found at post-mortem in the spleen of a man with severe haemophilia A who died of other causes, nobody with a bleeding disorder has ever developed vCJD.  To put that in context, a study found that 1 in 2000 people in the UK carry the implicated prion, which is the equivalent to 32,500 people.  At the moment there have been 178 cases of vCJD in the UK.

The news from the CDC related to a different form of CJD, sCJD appears to occur at random in the population at the rate of about 100 a year in the UK (fewer than 10 in Scotland). It mainly affects people of middle age and older and has been known about since the 1920s. It is a rare condition which is why there being two cases in recipients of blood products is unusual enough to trigger an investigation. It is not known whether these cases are related to being treated with plasma derived clotting factor products or whether these cases are coincidental. The CDC paper says, “Assuming an annual incidence rate of sCJD of 1.5–2.0 per million population the occurrence of 2 cases of sCJD in this total population may not imply a causal link between the treatment and the occurrence of the disease.”

There is active surveillance both in the UK and internationally for both sporadic and variant CJD. In the UK the National CJD Research and Surveillance Unit is based in Edinburgh and examines all cases of CJD in detail.  In these new cases they determined that they were sCJD (rather than vCJD ) by looking at how the disease progressed and where the CJD associated prions were found.

Prion diseases such as vCJD and sCJD are not well understood. There are still a lot of unanswered questions.  Haemophilia Scotland have highlighted the CDC paper to the Scottish Government, the Scottish Inherited Bleeding Disorders Network, and are looking into any potential legal implications.  We will be carefully monitoring the situation and will report any further developments on our website and to our members.

Further information about these cases can be found in a briefing paper produced by the European Haemophilia Consortium (ECH). There is more information about CJD on the NHS Choices website.  The best place to go with specific medical questions about your health is your Haemophilia Centre.

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