Our office at Hayweight House is in the Edinburgh East constituency for Westminster. That makes Tommy Sheppard MP one of our local representatives. When he wrote to us recently to find out more about what we do we were delighted to be able to set up a meeting.
Health is one of the issues which is devolved to the Scottish Parliament which means most of our advocacy work involves working with the Scottish Government or Parliament. However, many important issues which are relevant to inherited bleeding disorders are reserved to the Houses of Parliament and UK Government. Issues that MPs are responsible for include most benefits and social security decisions, employment, equal opportunities, and trade & industry.
We had a wide ranging discussion including,
- Our children and families work and the importance of giving families with inherited bleeding disorders the opportunity to meet one another and build links. We talked about how this sort of work is particularly important in rare conditions like bleeding disorders.
- Our funding challenges and the need for charities like ours to have a core of unrestricted funding to let us respond properly to the needs of our community.
- How the recent changes to benefits have affected people with inherited bleeding disorders in Scotland. We also briefed him on the achievements of those patients working directly with the Department for Work and Pensions on this issue.
- The challenges of making sure that people with inherited bleeding disorders had the opportunity to access new treatment and therapies. How will gene therapy be funded? How can we learn the lessons of the contaminated blood products infections when patient start using new classes of treatment?
- We also brought him up to speed with the contaminated blood campaign including the new payments we are expecting from the Scottish Infected Blood Support Scheme and our involvement with the Infected Blood Inquiry. He agreed to join the All Party Parliamentary Group on Haemophilia and Contaminated Blood which will help keep coordinate with other MPs.
At the end of the meeting Tommy Sheppard MP undertook to take up some of the issues we had discussed and we agreed to keep him briefed on developments.