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

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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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shark 3

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

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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.

Read the Scottish Needs Assessment Report

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In the run up to our AGM this Saturday we wanted to publish the final report of the Needs Assessment we conducted in partnership with the Scottish Inherited Bleeding Disorders Network.  We are grateful to The Lines Between who independently carried out the assessment. Thank you to everyone who took part by completing the survey to have their say.

There report highlighted that there is unmet demand for physiotherapy and psychosocial services.  The services already offered in these fields are greatly appreciated but more provision is need. Some of the other key findings from the report were,

  • Some people with less severe bleeding disorders suffer anxiety about how to manage their condition.
  • Over half of people have additional social, emotional, or practical support needs.
  • People are experiencing stigma and discrimination at work.
  • While it is understood that activity is important, activity levels are low.
  • People wanted more local and specific support services.

The top three priorities for the future were,

  1. Reducing the number of bleeds
  2. Finding a cure
  3. Reducing the frequency of infusions

Read the Report

You can download a copy here or by signing up for a free account on Issuu.

We formally launched the report on the 15th of March and then presented it to MSPs, patients, and healthcare professionals at a reception at the Scottish Parliament.

Photos from the Scottish Parliament Reception

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Photos courtesy of Elspeth Parsons of The Lines Between.

We are grateful to Baxalta (a Shire company) for the unrestricted grant which made the Scottish Needs Assessment possible.

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

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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.

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