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.