Mental health support is vital for individuals with muscle-wasting conditions
The last long year of Covid restrictions and logjams in health care for non-Covid cases has exacerbated pre-existing inequalities and magnified them.
I suspect that it will take years to overcome this for those with particularly difficult conditions. Post-Covid public policy debate will have to catch up with a whole host of relatively neglected and niche issues.
One of these causes close to my heart as the Chair of the relevant All-Party Parliamentary Group is that of Muscular Dystrophy.
We work closely with the Muscular Dystrophy UK charity that brings individuals, families and professionals together to highlight more than 60 rare and very rare progressive muscle-weakening and wasting conditions, affecting around 70,000 children and adults.
We all agree that accessing care and support for people living with the disease at the most local level is vital for managing the condition.
That requires access to adequate physiotherapy and care co-ordination, support and advice for using the most appropriate local services and care.
There are still parts of the country without sufficient care advisor support providing the co-ordination and advice required and this can leave people feeling isolated and disconnected from the care and support they need.
Some people have accessed counselling or generic psychological support but that generic support has sometimes not had a positive effect because this is not tailored towards the impact of the condition and its progression.
Physiotherapy is a critical component of managing the condition. There are relatively few specialist neuromuscular physiotherapists whose upskilling helps to pass on the knowledge of the appropriate physiotherapy needed.
Ensuring that hydrotherapy pools are made available all year round is important for many people with muscle-wasting conditions. The warm water (hotter than an average swimming pool) is a valuable source of therapy.
Psychological support is vital for individuals with muscle-wasting conditions and their families. Many affected by these complex conditions have been struggling to access appropriate psychological support for many years. Some people have accessed counselling or generic psychological support but that generic support has sometimes not had a positive effect because this is not tailored towards the impact of the condition and its progression.
We also need strong links with specialist neuromuscular multi-disciplinary teams to provide comprehensive co-ordinated care, which combines physical and psychological management of the condition. The NHS could also explore innovative online ways of providing psychological support.
We also agree on the need for more treatments. For people with muscle-wasting conditions, every single day is vital and that makes access to treatments more pressing. If treatments slow down the progression of a condition and potentially maintain independence for longer, this benefits the individual and their family and friends.
Many clinical trials are underway and several treatments are available or emerging on the horizon for children and adults. Translarna, for instance, treats children whose Duchenne muscular dystrophy aged two and over and who can still walk. It could help keep children walking for longer and delay the need for wheelchairs.
Another example is Spinraza, the first treatment for spinal muscular atrophy that has been available on the NHS since 2019 for some children and adults. Clinical trials showed a significant improvement in children’s motor function, allowing them to achieve, or maintain, physical milestones they would never otherwise reach, and to survive longer than expected. Some children who would never have sat independently have been able to and some have also been able to crawl and even walk.
Some progress has been made. More policy-makers understand Muscular Dystrophy. The wider public is more aware. We have expert campaigns for high quality research, faster access to emerging treatments, specialist NHS care and support at the right time and wherever people live, and services and resources to help people live as independently as possible. They must all be on a crowded public agenda after Covid subsides.
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