A new Muscular Dystrophy UK report has revealed that thousands of people with muscular dystrophy are going without access to physiotherapy, despite the therapy being central to the management of their condition.
The Overstretched report reveals that 60% of individuals with a muscle-wasting condition are unable to access appropriate physiotherapy for their condition.
A lack of respiratory physiotherapists as well as a postcode lottery on NHS funding of breathing equipment is putting lives at risk and is increasing costs to the NHS through avoidable emergency hospital admissions.
In other cases, individuals can only access physiotherapy on a short term basis – often in six week blocks. This isn’t appropriate for people living with a long term condition such as muscular dystrophy, who need more flexible, longer term support.
With individuals and families affected by muscle-wasting conditions across the UK, Muscular Dystrophy UK is calling for:
- Hospital Trusts and CCGs to ensure that their local muscle team includes a specialist physiotherapist.
- Trusts to work to ensure that patients with muscle-wasting conditions can have access to physiotherapy when they need it.
- Trusts to work to increase provision of community physiotherapy.
- Local health authorities across the UK to ensure that respiratory services include a specialist respiratory physiotherapist.
Nick Brown, Grantham, whose son Angus (13) has Duchenne muscular dystrophy said:
There’s just no specialist support in our area. There’s absolutely nothing. My son, Angus, sees a community physio about every six months who suggests stretches for him. His mum and I try to help him do the stretches, but we’re not experts. We have no idea if we’re doing them right.
Angus sleeps really poorly because of muscle pains that could be eased through regular physiotherapy. We do what we can for him, but this is nowhere near the level that proper physiotherapy support would provide for him. This terrible situation urgently needs to change; improved care would make all the difference to our son, and our family.
Dr Gita Ramdharry, Neuromuscular Rehabilitation Research Group Lead and Clinical Specialist Neuromuscular Physiotherapist, MRC Centre for Neuromuscular Diseases, said:
As physiotherapists, our primary aim should be to support people with muscle-wasting conditions to live well with their condition. Every child with a muscle-wasting condition deserves this, but the scant provision of specialist and community paediatric services means that many are missing out…In adulthood, access is even more restricted, with community service models being geared towards conditions that improve with rehabilitation, not progressing conditions.
It’s time to recognise the barriers, see the benefits and support the many committed physiotherapists across the country united in wanting better lives for people with muscle-wasting conditions.
Prof Karen Middleton, Chief Executive of the Chartered Society of Physiotherapy said:
This report highlights the urgent need for an NHS that wraps itself round the needs of the individual, particularly at a time when there are ever-growing numbers of people living with a long-term condition.
Patients are the experts in their own care, so it’s important that service planners give them the opportunity to touch base with specialist services when they feel they need to.
Clearly this needs to be within the resources available to them and these are extremely difficult times for the NHS, which is badly underfunded.
But that’s another reason to move towards a more patient-centred model – it is not only better for the individual, it would also deliver a more cost-effective service by keeping people living independently and well, and keeping them out of hospital.
Nic Bungay, Director of Care, Campaigns and Information at Muscular Dystrophy UK said:
With little or no medication to treat muscle-wasting conditions, physiotherapy provides a vital lifeline for individuals to maintain their health and quality of life. However, despite its importance to all those affected, a large number of people are going without. Those that do gain access can receive inadequate or short-term care, meaning they miss out on the benefits altogether.
We are deeply concerned at the lack of access to ongoing, skilled physiotherapy treatment that would make all the difference to thousands of lives. We urge NHS bosses across the UK to boost physiotherapy provision, and to ensure ongoing access that would relieve patients from needless pain and suffering, while saving the health service precious millions.
For more information, please contact Peter Sutton on firstname.lastname@example.org or call 020 7803 4838.