UK Rare Diseases Framework

Part of the debate – in Westminster Hall at 5:32 pm on 24th March 2021.

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Photo of Liz Saville-Roberts Liz Saville-Roberts Shadow PC Spokesperson (Home Affairs), Shadow PC Spokesperson (Women and Equalities) , Plaid Cymru Westminster Leader, Shadow PC Spokesperson (Justice), Shadow PC Spokesperson (Business, Energy and Industrial Strategy), Shadow PC Spokesperson (Transport), Shadow PC Spokesperson (Attorney General) 5:32 pm, 24th March 2021

I, too, extend my congratulations to Liz Twist on securing the debate and my gratitude to the Minister for the extra time.

The devolved nature of health and the need for proper planning and co-ordination between the nations of the UK have been brought into sharp focus as a result of the covid-19 pandemic. For people living with rare diseases, planning and co-ordination within health systems is key, as they face additional barriers to receiving a diagnosis and treatment, compared with those people who are suffering more common illnesses. In Wales, around 175,000 people will be affected by a rare disease at some point in their lives. A Welsh action plan that commits to proper joint working and collaboration between the four nations will be imperative in ensuring the best outcomes for people living with rare and genetic conditions in Wales.

That should involve data sharing between Wales’s Congenital Anomaly Register and Information Service and other rare diseases registries in the UK to help researchers identify non-genetic rare diseases that are not picked up through screening and genomic testing. It would also involve better cross-border co-ordination for care and treatment between Wales and the other nations, including education for clinicians and healthcare staff.

There is a question as to how the Welsh plan will integrate with health entities with a UK-wide remit, and challenges associated with decision making. I urge all national Governments to commit to publishing their action plans within 2021 so that we avoid delays in implementing the framework, to ensure that there is equitable treatment for those living with rare conditions.

I would like to mention my constituent Mark Edwards of Llanegryn, who has proved to be such an excellent ambassador for PKU, and to add my voice to the call for wider licensing of Kuvan.