Clive Smith: I went to Conservative Party Conference to raise the issues facing our members

Written by Aaron Dennis, October 28, 2022

The Conservative Party met in Birmingham last week for their annual party conference. I went to their conference, because I wanted to, as Chair of the Haemophilia Society, raise the key issues facing our members with the Government and MPs.

While the main speeches are broadcast on TV and discussed in the media, there is an active policy discussion going on behind the scenes. I was invited to speak at two fringe events on the challenges facing the NHS and what they mean for people with rare diseases. 

It was my view that we need to stop seeing healthcare as simply a cost but instead as an investment which will pay off in the longer term. The Government needs to avoid being short-sighted and must invest in new technologies, recruit more specialist staff, and ensure NHS trusts are held to account to deliver good services to people with bleeding disorders.

I was also able to raise the Infected Blood Inquiry with several MPs and Cabinet Ministers. What I said to them was that while the interim compensation payments being made this month are very welcome, they are only the first step in a process of setting up a full compensation framework for everyone infected and affected by contaminated blood products.

Looking at the challenges in rare diseases in more detail, my three priorities for better treatment and care are diagnosis, access to treatments and complimentary care.

On diagnosis, many people with bleeding disorders, particularly women, still find themselves waiting for a diagnosis for many years and then, when they are diagnosed, they are not getting the information they need to live with their conditions.

Access to treatment is very varied across the UK with not all patients getting the choice and personalisation of treatment they need. We also want government action and leadership now to ensure they can commission and then treat people with new technologies such as gene therapies.

And finally, haemophilia care is not just about treatment but requires specialist nurses, physios, psychologists and social workers. We hosted a round table in parliament earlier this year to raise this need and will continue to campaign for full multi-disciplinary care for people with bleeding disorders at all centres across the UK.

I hope that our views were heard by the ministers and parliamentarians present.

Clive’s attendance at Conservative Party conference was supported by a donation from Roche.