Before I start my opening statement on why we are seeking to reregister the group—under, I readily acknowledge, new terms of reference—I want to thank two individuals. One is Alastair Kent, who is stepping down from his role at Genetic Lives UK. Over the years, he has made a huge effort, not just in Scotland but across the United Kingdom, to draw to people’s attention the plight of those who live with rare genetic and undiagnosed conditions. The other is Malcolm Chisholm, the former MSP who was co-convener of last session’s cross-party group, along with me. Although I was co-convener, it is fair to say that Mr Chisholm is a force of nature and did a massive job of leading the cross-party group. I hope to follow in his footsteps, at least partially, should the group be reregistered.
I want to talk about one of my first experiences of the issues that relate to the cross-party group. In the previous parliamentary session, I was deputy convener of the Health and Sport Committee. The committee received a number of petitions from the Public Petitions Committee, and one of those petitions, on rare diseases, led to a Scottish Parliament inquiry into access to medicines. Importantly, that committee did that work in a non-partisan, non-political way. The Scottish Government responded in a similar fashion, and we drove real change. That was possible because of the cross-party group and the effect of those living with rare conditions, their families and campaign groups getting together and networking. That drove momentum in the area.
I want briefly to put some facts on the record, if time allows. The cross-party group on rare diseases existed in the previous session and undertook important work relating to issues affecting the rare disease community. It covered topics such as access to new medicines for very rare conditions, which I have already mentioned; improving research opportunities for rare diseases; gaps in specialist nursing provision; and improving the co-ordination of specialist care services.
The group played an important role in monitoring the implementation plan for rare diseases in Scotland and facilitated an opportunity for stakeholder involvement in the development of work undertaken by the Scottish Government in the area.
The cross-party group on rare, genetic and undiagnosed conditions will build on that work, but will have an expanded remit that includes genetic and undiagnosed conditions—that is the difference that I referred to in the terms of reference. In Scotland, over 2,000 babies are born with a genetic condition every single year, which equates to one in every 25 babies. In addition, there are over 6,000 recognised rare conditions, which are estimated to affect more than 300,000 people in Scotland.
Although there are many different rare and genetic conditions, patients and their families face many similar issues. Regardless of their specific conditions, many people who are affected by genetic and rare conditions report similar challenges, including difficulties in obtaining timely diagnosis; difficulties in accessing appropriate specialist care and support; difficulties in accessing appropriate information; difficulties in accessing treatment; and a lack of co-ordination of care. Although there are a number of condition-specific cross-party groups, none of those groups adequately addresses the challenges that face patients who are affected by rare, genetic and undiagnosed conditions.
In that context, I seek permission from the committee to reregister the cross-party group, with different terms of reference.