Plymouth MP backs constituent’s fight for access to specialist care

Alison Seabeck, MP for Plymouth Moor View, has challenged the Health Minister on the need to improve specialist services for those affected by rare and devastating muscle wasting conditions in Plymouth and across the South West.

Alison was joined by MPs from across all political parties at a House of Commons debate on rare conditions on Tuesday (17 December). The meeting follows the publication of the Strategy for Rare Disease, which aims to support the estimated 3.5 million people in the UK living with rare conditions. 

Citing the South West as an example of good practice in care and support for people with muscle-wasting conditions Alison Seabeck challenged Health Minister, Norman Lamb, to explain how the Strategy for Rare Disease would address difficulties in accessing specialist physiotherapy, wheelchair services and in the transition period from paediatric to adult services.

Alison’s constituent, Sharon Kitcher, whose 22 year old son James has the devastating muscle wasting condition Duchenne muscular dystrophy, told Alison ahead of the debate:
“Access to specialist care is extremely important for my son. There has been a huge difference in the level of support he receives since he has entered adult services and accessing specialist neuromuscular physiotherapy has been a particular challenge.”

Alison Seabeck, speaking at the House of Commons debate, said:  “The Kitcher family have been real champions for James and his care over many years, and they have certainly beaten a path to my door on many occasions. They are very tenacious, and rightly so. However, it has been difficult for them to ensure he gets the treatment he needs, even though they are strong and vocal in supporting him. It has been difficult to get the wheelchairs he has needed as he has grown, because such things take time. It has also been difficult to get the support the family as a whole needs so that the household can operate properly.

“The Muscular Dystrophy Campaign’s new ‘Bridging the Gap’ project funded by the Department of Health aims to secure service developments for people with muscle wasting conditions in the reformed NHS.

“The principle behind what the campaign is trying to do is the right one. The project is bringing together NHS leaders, clinicians and people living with muscle-wasting conditions so that they improve the patient experience.”