The report led by clinicians and physiotherapists found that for many patients with neuromuscular conditions, physiotherapy is essential in maintaining the best possible quality of life, for as long as possible.
However, physiotherapy is often restricted to patients where an improvement can be demonstrably measured by physiotherapists. Patients with progressive neuromuscular conditions fail to meet these criteria and are often refused physio on the NHS. They are then forced to pay for these services privately or go without.
It is estimated that 1 in 1,000 people in the constituency of North Thanet are living with muscle disease. Roger has added his name to a House of Commons motion calling on the Government to recognise the specialist nature of neuromuscular services and to ensure improved standards of care for all patients with neuromuscular conditions.
Following a Freedom of Information request and a survey of patients, Building on the Foundations: Focus on Physio
- many patients with neuromuscular conditions do not receive continuous, specialist physiotherapy or any physiotherapy at all; Two out of three PCTs fail to provide ongoing physiotherapy for patients where required;
- one in five NHS Trusts and PCTs fail to provide financial support to physiotherapists to attend training courses in neuromuscular conditions despite the NHS’s commitment to Continuing Professional Development (CPD);
- almost two out of three Trusts say they do not have any physiotherapists with specific training in neuromuscular conditions;
- the situation is particularly difficult for young adults making the transition to adult services – their current physiotherapy is often immediately withdrawn as soon as they turn 18 years-old;
- specialist physiotherapy services are vulnerable where they rely on charitable sector funding.
The Muscular Dystrophy Campaign’s report Focus on Physio
is the second stage in the Building on the Foundations
campaign, launched last December, calling for a specialist neuromuscular service across the UK. Attending the reception, Roger Gale MP said:
I was delighted to meet with local campaigners. It is very disappointing that patients with chronic conditions are being denied ongoing physiotherapy on the NHS.
I commend the work of the Muscular Dystrophy Campaign which is providing a national voice for my constituents affected by these rare conditions.
It is very important that the Department of Health recognise the specialist nature of the care needed by patients with neuromuscular conditions and ensure that such services are available to all patients, regardless of where they live.” Phil Butcher, Chief Executive at the Muscular Dystrophy Campaign, added:
It’s ludicrous to force patients with long term conditions to be re-referred by their GP again and again for ongoing physio. Parents are also rightly concerned about their children’s access to physio once they reach adulthood as it is often immediately withdrawn.
I am very pleased that we can count on the support of Roger Gale MP in the fight against muscle disease. He is a strong voice in Parliament for local disabled people.” Dr Jill Higgins, Director of Practice and Development at the Chartered Society of Physiotherapists, commented on the need for physio for patients with neuromuscular conditions:
Physiotherapy has a vital role to play throughout every stage in the treatment and management of the 60,000 people with neuromuscular conditions in the UK. Without it, mobility and independence can suffer and in some cases their condition can rapidly deteriorate. It is recognised that early and ongoing intervention of physiotherapy can also help reduce unplanned hospital admissions.”
The Muscular Dystrophy Campaign is the only national charity focusing on all muscle diseases. It invests £3 million a year in care support services, research, muscle centres, networks, information and resources. It has pioneered the search for treatments and cures for nearly 50 years and provides practical, medical and emotional support to people affected.
For interviews with local families or for more information about the work of the Muscular Dystrophy Campaign contact Sal Lalji at the press office on 020 7803 4844, mobile: 07971 151910 or email: firstname.lastname@example.org