Long Term Physiotherapy Denied To Patients With Chronic Conditions, UK

Main Category: Muscular Dystrophy / ALS
Also Included In: Rehabilitation / Physical Therapy
Article Date: 27 May 2008 - 3:00 PDT

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On Wednesday 14 May the Muscular Dystrophy Campaign was joined by 135 supporters, clinicians and healthcare professionals, from around the country, at a Parliamentary reception to lobby Government to improve specialist services for people with neuromuscular conditions.

More than 45 MPs and Peers attended the reception where the Muscular Dystrophy Campaign launched its Focus on Physio report, which reveales that patients with long term conditions across the UK are being denied access to ongoing physiotherapy by the NHS.

The clinician and physiotherapist led report, Focus on Physio, found that for many adults and children 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 physiotherapy on the NHS. They are then forced to pay for these services privately or go without.

Over 100 families, clinicians and campaigners lobbied Parliament and presented a petition of 2,500 signatures to 10 Downing Street, to call on the Government to recognise the specialist nature of neuromuscular services and improve access to ongoing therapies as a matter of urgency.

Speaking on Wednesday during a debate in the House of Commons on muscular dystrophy services the Minister for health, Ivan Lewis, said:

"It is clearly unacceptable that there are still such large variations in care, and that access to specialist diagnosis, treatment and on-going care services can far too often still depend on where people happen to live…

"…I also want to take the opportunity to pay tribute to the Muscular Dystrophy Campaign. Over the past 40 years, it has ensured that the condition, which has not always had a high status or been taken as seriously as it should be, has been given a loud national voice…

"…As well as its campaigning role, the charity provides important information and advice to families in these circumstances. It provides part of the cost of equipment for patients and makes a significant contribution to research into the condition…"

Following a Freedom of Information request and a survey of patients some of the key findings from Building on the Foundations: Focus on Physio, reveals:

- 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;

[Example: One patient in the South West has been waiting for a physiotherapy appointment for over a year. As a result this patient has had to fundraise to be able to receive physiotherapy privately.] - one in five NHS Trusts and PCTs fail to provide financial support for 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 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.

Robert Meadowcroft, Director of Policy at the Muscular Dystrophy Campaign, said:

"We were delighted with the overwhelming support shown at the lobby by both MPs and Peers. It's ludicrous to force patients with long term conditions to be re-referred by their GP again and again for ongoing physiotherapy. Parents are also rightly concerned about their children's access to physiotherapy once they reach adulthood as it is often immediately withdrawn.

"Our Building on the Foundations campaign calls for all Specialised Commissioning Groups to undertake a review of services in their region and we call on the Government to recognise neuromuscular services as being specialist."

Dr Jill Higgins, Director of Practice and Development at the Chartered Society of Physiotherapy, commented on the need for physiotherapy 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.

- Focus on Physio was written by leading clinicians and physiotherapists and includes information following a Freedom of Information request, responses from almost 100 patient surveys as well as information from the latest research papers on the effects of physio for patients with neuromuscular diseases. Attached is a PDF of the report and a picture of the presentation of the petition outside Downing Street.

Further key findings include:

- 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 16 - 18 years-old;

[Example: A 25-year-old patient from Middlesbrough used to receive regular physiotherapy when she was at school but as soon as she turned 16 and left school her physiotherapy stopped.]

- specialist physiotherapy services are vulnerable where they rely on charitable sector funding.

[Example: Flintshire Local Health Board refuses to pay the physiotherapy of five patients referred to the Neuromuscular Centre in Winsford.]

Action Needed:

At the reception the Muscular Dystrophy Campaign, clinicians and patients lobbied Government, the devolved Governments and the NHS to:

- ensure that all people, children and adults with a neuromuscular condition be offered and have access to ongoing and timely physiotherapy when they need it;

- press Specialised Commissioning Groups, acute trusts and local health boards to provide more physiotherapists who have an in-depth understanding of neuromuscular conditions;

- better understand the positive impact physiotherapy has on the health and wellbeing of people with neuromuscular conditions;

- ensure that a multidisciplinary service is in place for the care of patients with neuromuscular conditions;

- provide financial support to enable physiotherapists to access specific training in neuromuscular conditions.

Chair of the All Party Parliamentary Group on Muscular Dystrophy, Dave Anderson MP has tabled a cross party Early Day Motion 1498 about the report and its findings.

The Rt Hon Alun Michael MP for Cardiff South & Penarth has tabled a cross party Early Day Motion 1553 about the report and its findings.

Nia Griffith MP secured an Adjournment Debate in the House of Commons on Wednesday evening, 14 May, about access to specialist services for sufferers of muscular dystrophy.

For further information about the Building on the Foundations Campaign please visit here.

More than 60,000 people in the UK have muscle disease or a related condition. A further 300,000 people are affected indirectly as family, friends or carers.

Muscle diseases weaken and/or waste muscles. The conditions can be inherited or acquired and can affect people of all ages, backgrounds and nationalities. There are currently no cures.

Sign our petition and make a difference! As part of our Building on the Foundations campaign, we will be presenting a petition to Number 10 Downing Street on 14 May, which calls on the Government to urgently improve the care received by people living with muscle disease in the UK.

Muscular Dystrophy Campaign