Neurological Conditions

Baroness Thomas of Winchester Excerpts

Thursday 9th June 2022 Grand Committee

[Baroness Thomas of Winchester (LD) [V]]

My Lords, I too thank the noble Lord, Lord Dubs, for securing this debate, and the Neurological Alliance for undertaking such a large patient survey of people living with a neurological condition in the UK. Its findings include the views of people like me who are living with a muscle-wasting or neuromuscular condition, in my case Pompe Disease.

Muscular Dystrophy UK recently published Shining a Light, a report which demonstrated that people living with muscle-wasting conditions have struggled to access critical services such as specialist muscle clinical appointments, specialist respiratory care and specialist neuromuscular physiotherapy, especially because of the pandemic and shielding. This lack of provision has had a negative impact on their overall physical and mental well-being.

As a result, an ever-increasing backlog of patients is waiting for appointments and, in many cases, the delay in access to specialist services has resulted in a more acute progression of a person’s condition. This has, in turn, led to the need for additional treatments and longer stays in hospital, thus putting even more pressure on an already strained service. This is evident as Muscular Dystrophy UK’s findings indicated that delayed access to muscle clinics, physiotherapy and hydrotherapy would result in irreversible muscle weakness and muscle loss.

All people living with muscle-wasting conditions should be able to access fully equipped multidisciplinary teams, diagnostics and clinical services when they need them, no matter where they live in the UK. Staffing is a crucial aspect of improving neuromuscular care, and I support the need for the Government to develop a strategy to attract, recruit and retain the neuroscience workforce, specifically the front-line specialist nurses and other clinicians needed to deliver holistic care on a sustainable basis. I believe, as others have said, that establishing a neuro task force will go some way to solving this increasingly complex problem affecting this patient community.