Simon Hughes MP

Local MP supports fight to improve services for vulnerable patients - Hughes

On Wednesday 14 May, Simon Hughes, MP for North Southwark and Bermondsey joined the Muscular Dystrophy Campaign, local campaigners and clinicians to present a petition to 10 Downing Street calling on the Government to improve access to specialist services for patients with neuromuscular conditions.

This comes on the day that the Muscular Dystrophy Campaign published Focus on Physio, a report led by clinicians and physiotherapists which reveals that patients with long term conditions across the UK are being denied access to ongoing physiotherapy by the NHS.

The report 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 physio on the NHS. They are then forced to pay for these services privately or go without.

Simon Hughes MP has also signed a motion in the House of Commons, calling on the Government to improve services for vulnerable patients across the UK with muscle disease. {Optional}

It is estimated that 1 in 1,000 constituents in the constituency of North Southwark and Bermondsey are living with muscle disease.

Campaigners collected 2,500 signatures for their petition. The petition calls on the Government to address the following concerns as a matter of urgency:

• Recognise neuromuscular services as specialised services requiring a multi-disciplinary management of care;

• Acknowledge that survival and quality of life of some patients with NMD is being compromised as they do not have access to specialist diagnosis and a multi-disciplinary package of care;

• Pay particular attention to the significant geographical inequalities across the UK in access to specialist health services for children and adults with NMD;

• Recognise that where excellent services are in place, they are vulnerable given their dependence on a handful of leading clinicians who in time may move on or retire;

• Work with commissioners of health services and health professionals to improve current service provision across the UK;

• Encourage Specialised Commissioning Groups in England to follow the lead of the South West Specialised Commissioning Group to undertake comprehensive reviews of services for patients with NMD in their region;

• Press the devolved assemblies and local commissioners of health services to ensure that all patients are able to access specialist diagnostic services and specialist multi-disciplinary services elsewhere in the UK to ensure adequate care and diagnosis for these complex diseases.

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.

Meeting campaigners and presenting the petition, Simon Hughes MP, said:

"I am delighted to be supporting this campaign. It is very disappointing that patients with chronic conditions are being denied access to specialist services in certain areas.

"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:

"I am really pleased that we can count on the support of Simon Hughes MP in the fight against muscle disease. He is a strong voice in Parliament for local disabled people."

"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.

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: s.lalji@muscular-dystrophy.org

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Notes to Editors:

• Attached are two photographs, one of Simon Hughes MP in front of 10 Downing Street and a group photo of all those handing in the petition into Downing Street.

Group photo L to R: Lord John Walton, Philip Butcher, John Hayes MP, Dr Roger Berry MP,

Baroness Celia Thomas, Sir Nicholas Winterton MP, Simon Hughes MP, Dr Doug Wilcox.

Stella Fowler, Murray Field, Jill Brown, Michaela Hollywood

• 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.

• 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.

Responding, the Rt Hon Ivan Lewis, Minister for health 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;

• I welcome the fact that my hon. Friend the Member for Llanelli has brought to the attention of the House a crucial issue for a number of families in our country. I shall reflect on her contribution and I, or a relevant ministerial colleague, will meet her to discuss how we can improve the experience of the services for families and for people who have the condition.

• 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.

• For further information about the Building on the Foundations Campaign please visit: http://www.muscular-dystrophy.org/campaigns/building_on_foundations/index.html

• 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.