UK Rare Diseases Framework

Mary Glindon Excerpts

Wednesday 24th March 2021 Westminster Hall

[Mary Glindon (North Tyneside) (Lab) [V]]

It is a great honour to serve under your chairmanship, Mrs Miller. I congratulate my hon. Friend the Member for Blaydon (Liz Twist) on securing the debate and on her excellent opening speech. The rare diseases framework is welcome, but in order to deliver on the vision it is important to reflect on the experiences of those with rare diseases over the past year.

I chair the all-party parliamentary group on muscular dystrophy, and last month our meeting brought together people living with muscle-wasting conditions, leading health professionals and charities representing relatives to discuss the impact of covid-19. It came after a month-long survey conducted by Muscular Dystrophy UK to assess the impact of covid-19 on people living with muscle-wasting conditions and their families and the effect on accessing healthcare services. There were over 400 survey responses and they were very concerning. The comments made at our APPG meeting backed up many of the survey’s findings.

We heard that the delivery of standard care had been put on hold and essential services were interrupted, and that it was proving very difficult to regain muscle strength after losing six months to a year of physiotherapy. Some had experienced diagnostic tests being put on hold as resources were diverted because of the pandemic and a number of clinical trials were also halted. Worryingly, the physical and mental impact of shielding has left many people reluctant to go out even to hospitals when restrictions are relaxed.

Our APPG also considered what might happen when restrictions are relaxed and we return to some kind of normal life. Infrastructure challenges for service provision still remain, and there is concern about if and when staff and resources redirected to covid-19 will return to neuromuscular services. Virtual clinics have had a positive impact and there are benefits to be taken forward of continuing these for some people, especially taking into account issues such as long travel times. However, not everything can be assessed or picked up virtually. Routine face-to-face appointments are still critical.

Members of the APPG are always grateful for the support of our secretariat Muscular Dystrophy UK, medical professionals and those with muscle-wasting conditions. On their behalf, I ask the Minister to outline how the action plans for the framework will learn from patient and health professional experiences during the pandemic, and will also shape the priorities for accessing essential specialist care and mental health support.