Monthly Archives: April 2014

The Provost of Inverness marks World Haemophilia Day with Haemophilia Scotland

 

We were deeply honoured to be hosted by Provost Alex Graham at the historic Old Town House in Inverness for a Civic Reception to mark World Haemophilia Day.

Although World Haemophilia Day is always on 17th April we held the Civic Reception on the 19th to allow those who attended to combine the event with a trip to the theatre.  Inverness based production company, Dogstar, have worked with two Scottish people with Haemophilia to dramatize the contaminated blood disaster, in a new play called Factor 9.

The Provost spoke eloquently about the importance of World Haemophilia Day and the work of Haemophilia Scotland and gave us some background to our historic surroundings.  Our Chairman, Bill Wright responded with our thanks to the Provost but also highlighted the situation for the majority of people with bleeding disorders around the world.  The themes of World Haemophilia Day this year was Speak Out: Create Change.  Bill pointed out that this had been very effectively done through the play.  Bruce Norval, whose personal testimony was used to write the play, then led a round of applause to the actors, writer and everyone involved in the production.  He spoke movingly about the importance of the story of the contaminated blood story being more widely known.

The play itself more than lived up to expectations.  The sheer emotional power of the script and performances lead to an electric atmosphere in the Eden Court Theatre.  Nobody who sees the production can fail to be deeply moved and leave the theatre deep in though.

A current campaign on the crowd funding website, Kickstarter, is very successfully raising funds to bring the play to the world famous Edinburgh Fringe in August.  Every penny pledged will allow this important play to be seen by a wider audience.  Haemophilia Scotland has donated £532 to the campaign – that’s £1 for each of the 532 people with bleeding disorders in Scotland who were infected in the contaminated blood disaster.

Six Mentors are trained and ready to go

All parents could do with a bit of extra support from time to time but sometimes you need someone who understands bleeding disorders too.

All parents could do with a bit of extra support from time to time but sometimes you need someone who understands bleeding disorders too.

Haemophilia Scotland is pleased to announce that we have recruited 6 mentors to provide 1-1 support to other families living with a bleeding disorder across Scotland.

Sunday 27th April marked a very special day in which all mentors came together for training. There is a vast amount of experience within our group of mentors and all are keen to share their experiences and support families through different challenges.

We have Mentors with children as young as three right up into adulthood! So they have been through many of the transitions, challenges and successes that new families may face.

If you are a family with a bleeding disorder and think that a mentor would be helpful as an active listening ear and support network for you and your family, then please contact Jen (Parent Mentor Coordinator) at Mentor@haemophiliscotland.org or 07926096743

Our mentors are ready to go!

 

Scottish Parliament marks World Haemophilia Day 2014

CommitteeRoomVHR20040810

Image © Scottish Parliamentary Corporate Body – 2012. Licensed under the Open Scottish Parliament Licence v1.0.

We are delighted that, thanks to Rhoda Grant MSP, the Scottish Parliament marked World Haemophilia Day with a motion.

The motion read:

“That the Parliament notes that 17 April marks World Haemophilia Day 2014, which aims to encourage those with bleeding disorders from all over the world to speak out about their illness and create change; welcomes this year’s focus on reaching out to young people all over the world with bleeding disorders so that they can develop strong leadership and assume key roles in the community; commends what it sees as the great work of the World Federation of Haemophilia, which is an international not-for-profit organisation that has worked to improve the lives of people with haemophilia and other inherited bleeding disorders for 50 years; understands that haemophilia is a rare disorder that about 1 in 10,000 people are born with; believes that there are over 2,300 people diagnosed with the disorder in Scotland; commends the work of Haemophilia Scotland, a national organisation set up in 2012 to support people and families who live with bleeding disorders such as haemophilia and von Willebrand disease, and recognises the World Haemophilia Day civic reception that it has organised in Inverness to mark the day.”

It was signed by a wide range of MSPs from all parties.

Kevin Stewart, Elaine Murray, Patricia Ferguson, Hanzala Malik, Margaret McDougall, Nanette Milne, Jamie McGrigor, Bill Kidd, Jackie Baillie, John Mason, Liam McArthur, Christina McKelvie, Mike MacKenzie, Anne McTaggart, Roderick Campbell, Dennis Robertson, Kenneth Gibson, Richard Lyle, Neil Findlay, David Torrance, Aileen McLeod, Malcolm Chisholm, Maureen Watt, Jackson Carlaw, Margaret McCulloch, David Stewart, Dave Thompson, Sandra White, Christine Grahame, Siobhan McMahon, Mary Scanlon, Colin Beattie, Gil Paterson, Stewart Maxwell

World Haemophilia Day 2014 – Speak Out : Create Change

The theme of this year’s World Haemophilia Day is Speak Out :  Create ChangeIt is a very important message.  An estimated 1 in 1000 people have a bleeding disorder; close to seven million men, women and children around the world, but 75 per cent of them don’t know it and receive little or no treatment. Since its inception in the late 1960s, the World Federation of Hemophilia (WFH)  has been working steadily to improve those numbers and its vision is to provide treatment for all people with inherited bleeding disorders, no matter where they live.  You can make a donation directly to WFH to support their work or, to provide longer term support, why not consider becoming a member?

World Haemophilia Day 2014

April 17th is World Haemophilia Day every year.

One of the most effective tactics that WFH has used is to work with the patient organisations in each country so that we have a stronger and more effective voice with Government.  There work has shown that strong and active patient organisations lead to better treatment and care.  This is one of the reasons why one of the three main areas of the work of Haemophilia Scotland is advocacy.  We engage with a wide range of professionals, politicians and decision makers to make sure that the interests of people with bleeding disorders in Scotland are never overlooked.  To highlight this work, and mark World Haemophilia Day, we are honoured to be the guests of the Highland Council Provost for a Civic Reception this Saturday (there are still some tickets left if you’d like to come).  As well as raising awareness of the work of the WFH and Haemophilia Scotland we will be promoting an exciting new play about the contaminated blood disaster, Factor 9 which is at the Eden Court Theatre in Inverness later that night as part of it’s first tour.  This production is a fantastic example of people with bleeding disorders speaking out to create change.  If you would like to support plans to bring the play to the Edinburgh Fringe there is a Kickstarter funding appeal to raise the necessary funds.

 

Could your family benefit from support from a mentor?

All parents could do with a bit of extra support from time to time but sometimes you need someone who understands bleeding disorders too.

All parents could do with a bit of extra support from time to time but sometimes you need someone who understands bleeding disorders too.

We are looking for families in the Glasgow and the West of Scotland to take part in our Parent Mentoring Project.

Are you a parent of a child living with haemophilia or any other bleeding disorder?

Are you experiencing any difficulties in managing the condition?

Do you often wish that you could talk to other families who may have shared similar experiences?

Haemophilia Scotland is piloting an exciting new parent mentoring programme and looking for families who may be in need of some extra support.

  • Our Parent Mentors will provide confidential peer & emotional support, on a 1 to 1 basis either face to face, by email or by telephone.
  • A supportive listening conversation and companionship including sharing
  1. personal experiences
  2. resource information
  3. tips/strategies on coping
  4. an understanding ear
  • Between one and two hours of support per week for a minimum of six months.

The support is flexible and will be agreed to suit your family.

If you are interest or would just like to find out more the we would love to hear from you.

Please contact  Jen Breen – Parent Mentor Coordinator

Phone 0792 609 6743
Email mentor@haemophiliascotland.org

 

Supportive MPs listen to those affected by contaminated blood

 

Alistair Burt MP, a member of the All Party Parliamentary Group on Haemophilia and Contaminated Blood, invited those affected by the contaminated blood disaster to come to London for a meeting today.  Despite holding two such meetings on successive days there have been many more people who wanted to go than have been able to get in.

Mr Burt introduced the meeting making it clear that the MPs who were attending all had constituents who had brought the issue to them.  They all recognised that the issue had not been successfully resolved by successive Governments.  He said that he had been able to engage the Prime Minister in the issue but their wasn’t ‘untold million’ on the table.  He hoped the meeting would let the MPs provide and update on what they are doing as well as giving affected people a chance to answer the question “What could be done better?”

He said he thought that final decisions about the best way forward might take some time as they should properly wait until the Penrose Inquiry in Scotland had reported.  However, generally speaking he felt that this Archer Inquiry and long running campaign meant that the issues were well know.  Therefore, he wanted to work towards getting agreement from all the parties who might be represented in the next Government to agree a way forward before the General Election in 2015.  The All Party Parliamentary Group will also shortly be starting an Inquiry into the fitness for purpose of the current Trust/Fund/Foundation support mechanisms.

Most of the MPs then spoke, giving their view of the campaign and often the views of their constituents.  The meeting was then opened up to hear from those affected.  It was recognised that not everyone has been able to attend meetings so YouGov have agreed to develop an online tool so that more people can be involved.

Issue raised included,

  • The harm done by the treatments for the infections.
  • Ill treatment from the various trusts, funds and foundations who currently provide support.  Beneficiaries are not the enemy.
  • Bereaved families not getting enough support.
  • The need for the Department of Health to engage and answer outstanding questions.
  • Destruction of documents and records.
  • People’s desire for enough support that they were put back in the position they would have been in if the infections hadn’t happened.  There should be consideration of the pain and suffering too.
  • The need for closure to be able to move on.
  • Inequality of treating widows differently depending on the different viruses.
  • Having to plan for the future when you have spent most of your life not thinking you’d have one.
  • The need for an apology.
  • The desire not to be treated as a victim.
  • Worries about vCJD.
  • The impact of Hepatitis C treatment on the ability to work.
  • Concern that any payments shouldn’t be taken into account when care needs are being means tested.
  • Becoming to ill to work, both now and in the future.
  • The desire to provide for partners and children after death.
  • That those affected shouldn’t have to go through the ATOS process.

During the discussions we were told that there was little or no political support for a Public Inquiry.  It was suggested that there would be a need for a process to see if there were gaps that needed addressing following the Penrose Report.  It was also pointed out that select committees can compel witnesses and evidence during their Inquiries.

After 10 years none of the Ross Report recommendations have been implemented in full

With the Penrose Inquiry expected to report later in the year, we commissioned a report into the implementation of the Report of the Expert Group on Financial and Other Support by Lord Ross (The Ross Report 2003).

READ OUR REPORT IN FULL : The Ross Report- Ten Years On

Ten years after the Ross Report was published there has been some progress in key areas;

  • The Skipton Fund was introduced and provides much needed financial support but at lower levels than Lord Ross recommended.
  • NHS Health Improvement Scotland was established in 2010.
  • Voluntary Sector Organisations can apply for funding to provide specific counselling services for those affected.

However, ours analysis shows the work of implementing the Ross panel’s recommendations is far from complete.

Although the current administration has delivered real action of contaminated blood; establishing the Penrose Inquiry and pledging a meaningful response to it, the hard truth is that ten years on victims are still waiting for action in vital areas.

There has been little progress on access to insurance meaning many of those affected worry about being able to provide for their families after they die.  Support payments from the Skipton Fund are still not at the levels recommended and are still not being paid directly.  Even more concerning ongoing support payments are not passing to bereaved families when someone who was infected dies.  We are also supporting calls from people who were infected through a blood transfusion for a more exhaustive look – back at this transmission route.

The Scottish Government and Scottish Parliament have a good track record of listening to the victims of this disaster.  They have heard petitions, investigated with committees, set up expert panels and even established a full Public Inquiry.  We hope that by highlighting the lack of progress that was made in implementing the 10 year old Ross Report we can focus the minds of MSPs from all parties on the need for a substantial response to the Penrose Inquiry when it reports.  It is high time that this long running campaign was brought to an end with a package of measures which fully supports the infected and their families.”

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