Bill Wright and Brian O’Mahony outside The Houses of Oireachtas (Ireland’s National Parliament) after hearing a topical question from Deputy Robert Troy on the need for the Health Service Executive to put in place an early access programme for patients with hepatitis C to new direct acting antiviral.
Yesterday we visited The Irish Haemophilia Society to find out more about what they do and were made extremely welcome.
Scotland and Ireland have a lot in common. Ireland has 4.6 million people compared to 5.3 million in Scotland and our economies are almost exactly the same size too (GDP of approximately $218 billion and $216 billion respectively). They are also one of very few countries who have been through an official Public Inquiry into the contaminated blood disaster. That is why we thought, as a new charity, Haemophilia Scotland would have a lot to learn and we weren’t disappointed!
The Irish Haemophilia Society very kindly gave us an enormous amount of time an we covered an incredible range of topics. Everything from strategy, governance & finance through events, services & projects to our international work and how to respond to the Penrose Inquiry. We had very useful discussions about the current campaigns in both countries for access to the new “Interferon-Free” therapies for Hepatitis C. We also found out more about the psychosocial work of The Irish Haemophilia Society and how it could be adapted for Scotland.
We came away incredibly impressed at what has been achieved with 40 years of hard work in Ireland. We flew back with notepads full of ideas and armfuls of information which we will use to keep improving our work.
Finding out what goes on in other countries, particularly in Europe, can be incredibly useful. If you’d like to do this yourself remember it isn’t too late to attend the European Haemophilia Consortium Conference in Belfast from the 3rd to 5th of October 2014. We are presenting a poster at the conference on our Parent Mentoring Project.
The Irish Haemophilia Society produce and vast range of publications and booklets for people affected by bleeding disorders. These are just some of them!
Tenement flats showing people supporting the Yes and No campaigns.
The Independence Referendum raised lots of important issues about where decisions should be taken. At the recent meeting of the Haemophilia Scotland Board of Trustees there was a discussion about the questions that we had been asked during the referendum and what could be affected by independence or more powers for the Scottish Parliament.
Despite the referendum campaign being over the debate about Scotland’s future is continuing. It is clear that we have a roll making sure that the needs of people with bleeding disorders are taken into account during the coming months and years as these issues continue to be debated.
To do that we want to construct a list of the issues which will have to be dealt with during any process of change and those which concern our members. We are publishing them here to give you the opportunity to suggest changes or additions so that we can be sure we are representing you properly.
Issues potentially raised by constitutional change
- Will people with bleeding disorders in Scotland continue be able to access second opinions and specialist support from Comprehensive Care Centres in rUK, if necessary?
- Will Scottish patients still have access to organs donated in the rUK?
- Will Scottish Haemophilia Centres continue to report data to the UKHCDO National Haemophilia Database or will a separate patient register for Scotland be established?
- Will those Scottish Centres who use it continue to have access to UKHCDO products such as HCIS and Haemtrack?
- To keep control of costs and maintain access, will Scotland still be able to purchase clotting factor products in combination with England, Wales and Northern Ireland? If not, might Scotland be able to purchase clotting factor products with any other state?
- Financial Support
- How will financial support currently supplied by The Macfarlane Trust, Skipton Fund and The Caxton Foundation be provided?
- What changes will there be to the benefits system which will affect people with life-long, deteriorating and variable conditions such as a bleeding disorder?
- Patient Representation
- Will Scotland establish a National Haemophilia Committee and a Product Selection Board with patient representation modelled on the best practice of the Republic of Ireland and if so will it have similar terms of reference? Would these bodies have more powers than a National Managed Clinical Network?
- Blood Safety
- Will Scotland establish its own Advisory Committee on Dangerous Pathogens and will it include representation from the bleeding disorders community?
- Will Scotland establish its own Advisory Committee on the Safety of Blood, Tissues and Organs and will it include representation from the bleeding disorders community?
- Will the National CJD Research & Surveillance Unit based in Edinburgh continue monitoring CJD for the whole of the UK?
We look forward to hearing your thoughts and ideas, both about the questions and what you think the answers should be.
The Haemophilia Scotland volunteer desk.
For a small charity like us it is really important that everyone can get involved in what we do. That is why we’ve invested in a volunteer desk at Hayweight House. If you’ve got a little time to spare and would like to help there so many opportunities to get involved.
We already have three fantastic volunteers, Nina, Angela and Jen who all come into the office regularly to work on specific pieces of work. Nina is driving our Women’s Project, Anglea is using her expertise to help us fulfil our regulatory and governance responsibilities, and Jen is making an enormous difference to our fundraising effort.
However, not all of the volunteering opportunities with us involve being able to come into the office. We need your expertise and ideas to plan and organise our activities. Maybe you’d like to help developing our Children and Families work? Could you help us organise our events? Would you like to see more done for an older age group and have some time to give? A great example is our hard working mentors in the Parent Mentoring Project. Not only do they provide one to one support to other families in Scotland who can benefit from talking to someone who has lived through similar experience but they also do vital work helping plan our children and families work.
Some of our hardest working volunteers our our Trustees. In all charities Trustees oversee the strategic direction of the organisation and are ultimately responsible for protecting our reputation and ensuring we continue into the future. We are very fortunate to have a group of Trustees who do even more and take a particular interest in specific areas of our work.
People get involved with Haemophilia Scotland for a wide variety of reasons. Sometimes it helps to build a CV or to learn a new skill. However, everyone involved is motivated by a desire to see improvements for the bleeding disorders community in Scotland. We are extremely grateful to everyone for their enthusiasm, skills and ideas. We really couldn’t do everything we do without our amazing volunteers.
So if you’d like to get involved as a volunteer in the office, in any of our projects, or as a Trustee please call Dan Farthing 0131 524 7286 or email him at firstname.lastname@example.org
Artists impression of the new Edinburgh Sick Kids Hospital
Planning permission has now been given for the new home for the Edinburgh Sick Kids Hospital.
The new facility will be constructed on the site of car park B at the Royal Infirmary of Edinburgh and will be joined to the existing hospital by a link building between child and adult emergency departments.
Work on the new hospital is anticipated to start by the end of the year once Financial Close is achieved and the Scottish Government approve the Full Business Case for the project.
You can find out more on the NHS Lothian website.
NHS Choices have just released this new video giving advice on how to use your European Health Insurance Card (EHIC) in Spain.
Using the card inside the EU (and some other countries) means that you are entitled to the same treatment a local resident would be. If you have a bleeding disorder it is important to remember that doesn’t necessarily mean the same treatment as you’d get in the UK. You still need to talk to your Centre before you go and make sure you have a good travel insurance policy.
Find out more on our travel pages.
Regular readers will know that everyone at Haemophilia Scotland is very excited that the World Federation of Hemophilia is bringing it’s conference to Glasgow in 2018. We think this will be an exciting opportunity for everyone involved in bleeding disorders to Scotland to have access to the very best information from around the world.
However, many of you may not know much about what the WFH do and why their work is so important. The recently released video above gives some highlights from the presentation by WFH President, Alain Weill, at this years conference in Melbourne. In particular he talks about the challenge of making sure everyone is informed about the new therapies and the work they do to get treatment to people in developing countries.
The meeting was held in the Quaker Meeting House in Edinburgh.
We are members of the Cross Party Group on Rare Diseases so that we can work with other organisations representing people with rare conditions to give us all a stronger voice in parliament.
Over the last year the group has been great for keeping us informed about bigger picture for rare diseases which bleeding disorders are part of. In particular the work that has been going on to produce the Implementation Plan for Rare Diseases in Scotland which we told you about when it was published in July.
Today we discussed ideas to put to the MSPs about how the group can continue to grow and develop. Some of the ideas which were discussed included setting up working groups, investigating specific issues and giving more opportunities for you to talk directly to the MSPs yourselves.
If you have any ideas about what the Cross Party Group on Rare Diseases should be looking at over the next year we’d love to hear from you.
Electron micrograph of Hepatitis C virus
New products for the treatment of Hepatitis C are beginning to become available. The new treatments offer the prospect of being treated for less time with a higher chance of success. For many it will also be possible to avoid using Interferon which is associated with very unpleasant side affects.
We have to objectives for the new treatment. We want to make sure that the new treatment options are available to everyone with Hepatitis C as a result of the contaminated blood disaster. We also want to make sure that anyone who decides to use the new treatments has the information they need to make an informed decision.
To achieve this we have made representations and submissions to the Scottish Medicines Consortium to make the case for introducing the new treatments in Scotland. We have raised the need to have access to the products at a meeting with Alex Neil MSP, Cabinet Secretary for Health and Wellbeing and gone on to highlight the needs of people with bleeding disorders with Professor David Goldberg who is currently leading a group developing clinical guidelines. We also hope that we will be able to secure the funding to run an information event to let our members put their questions to the experts.
We hope to see the draft clinical guidelines soon and will keep you all up to date. Meanwhile you can find out more about the treatments themselves on our Interferon-Free treatments for Hepatitis C page.