Rare Diseases Strategy

Andrew Bingham Excerpts

Tuesday 28th March 2017 Westminster Hall

[Ben Howlett]

I think the sector agrees on that point, from patient groups to the constituents whom the hon. Lady represents, as well as all the people with an undiagnosed condition who might access the services of that facility in future and many others throughout the country. The Government need to rethink the implementation and ultimately introduce an impact assessment on that basis.

I know that several hon. Members want to speak, so I will conclude by welcoming the commitment and dedication of this Minister and the Under-Secretary of State for Health, my hon. Friend the Member for Oxford West and Abingdon, in providing a solution to our long-standing problems with the implementation of the rare diseases strategy in England. Following the publication of our report, I hope that the Minister will be able to provide clarity on the questions that I have asked. The UK is doing superb work and leading internationally on rare diseases.

[Andrew Bingham (High Peak) (Con)]

I commend my hon. Friend on securing this important debate. My constituent Will Newman contacts me regularly about his granddaughter Ellie, who lives outside my constituency. He wanted me to come to this debate and thank my hon. Friend and the Minister for the work that they are doing. We think that rare diseases do not affect many people, but those whom they affect, they affect hugely. Does he, like me, take heart from the Prime Minister’s words in September? She said at Prime Minister’s questions:

“We are committed to ensuring that patients with rare conditions get access to the latest medicines”. —[Official Report, 7 September 2016; Vol. 614, c. 334.]

As she also said, we are taking the necessary steps to get those to them.

[Ben Howlett]

I thank my hon. Friend for that intervention. He is a great champion for his constituents. I share his hope in the Prime Minister’s commitment, made at an early stage in her office, and in a Minister who obviously understands rare diseases, having one herself, and who has made a clear personal commitment to resolve the issue. Having worked alongside the Department of Health for many years, I have been wanting to see this come to fruition. I am glad that we now have a leadership commitment in place to deliver it for the first time, at least in my memory of working alongside the NHS.

The UK is doing superb work and leading internationally on rare diseases. I hope that our all-party parliamentary group’s report will make a significant difference and help to steer the Department of Health to a place conducive to both the Minister’s requirements and ours. I look forward to hearing his response.