Manifesto for Muscle - Wales

The Muscular Dystrophy Campaign is proud to launch its Manifesto for Muscle - Five Steps to Defeat Muscle Disease in Wales. We are asking all political parties to support our campaign to improve research, care and treatment for muscle disease (md).

The five steps for support are:
1. People living with md must have access to a diagnostic and care network providing specialist support at the national level and high quality health provision available closer to home.
2. Local authorities should avoid delay in carrying out assessments and installing adaptations and equipment in the home to enable people with md to maintain their independence as far as possible.
3.Timely provision of powered wheelchairs and other equipment is essential so that children and adults with md can participate fully in education, employment and all aspects of wider society.
4. Many carers urgently need improved support, people with md often rely on them for personal daily care.
5. Increased research funding, combining public and private sector money, is required to strengthen the fight against md with; a focus on research that develops new treatments and methods of clinical management, taking science from the laboratory to clinical trials with patients.


About muscle disease

The Muscular Dystrophy Campaign works with and for over 1,500 people in Wales who are living with one of more than 60 types of md. These conditions range in severity and onset: from those which present in childhood and severely limit life expectancy to those which may not present symptoms until much later in life and, though disabling do not affect life expectancy. All cause progressive wasting or weakening of the muscles, however, leading to mobility problems, disability and, in many cases,weakness in the heart muscle and difficulty breathing which can be life-threatening. Most of the conditions are genetic and hereditary, though some arise from a new mutation in a gene where there is no family history. There are also some acquired conditions.

With advances in genetics and through research funded both by the MD Campaign and others we now know, for many of the conditions, precisely which part of which gene is faulty.Work is now underway to attempt to translate this knowledge into treatments and cures.This research is time consuming and expensive but will lead to treatments and therapies that will save and improve thousands of lives. More research funding is desperately needed.

Support The Five Steps To Defeat Muscle
Disease In Wales
In this manifesto we set out the problems faced by people with md, and our proposals for changes to improve the quality and length of life for 1,500 people, their families and carers.

Step 1

People living with md must have access to a care network providing specialist support at national level and high quality health provision closer to home.

People living with md, and their families, are heavily reliant on the NHS, Social Services and other agencies to assist them in living with their condition and to provide treatment, care and equipment enabling them to lead, as far as possible, ordinary lives and not be excluded from mainstream society because of their disability.

Currently some services are excellent and this level of provision needs to be standardised across the country, eliminating patchy, non-existent or under-funded services that do not deliver the standards of care needed.

Each person living with md should have access to a network of care - with a specialist muscle centre at its heart - that is backed up by local muscle clinics with a range of therapists providing services such as physiotherapy, respiratory, cardiac and orthotics support, speech and language therapy, and occupational therapy.

We believe this service standard should be integrated into the changes required by the 'Designed for Life: a new strategy for Health and Social Care in Wales.'

Step 2

Local authorities should avoid delays in carrying out assessments and installing adaptations and equipment in the home to enable people with md to maintain their independence as far as possible.

The mobility problems and disability associated with md often mean that adaptations to the home will be needed.This involves widening doorways and adapting bathrooms to facilitate the use of a wheelchair and the provision of equipment such as specially adapted beds, external ramps and handrails.

The abilities of a person with md and the demands of their environment should be assessed by an occupational therapist who will draw up plans (with the help of an architect when needed) for the adaptations required which should be commissioned and funded by the local authority.

Currently people with md have to apply to the same local authority fund for necessary adaptations as able-bodied people looking for improvement funds for their homes. We want to see a dedicated on non-means-tested grant scheme introduced to cover this service. The funding arrangements for such adaptations need to be transparent and understandable to patients, their carers and health professionals.

Step 3

Ensure timely provision of powered wheelchairs and other equipment so people with md can participate fully in education, employment and all aspects of wider society.

Many people with md will need a powered wheelchair with the correct seating and support. At present the provision of powered wheelchairs is patchy and in some places virtually non-existent.This often means that those who need a wheelchair have to buy it privately or approach charities to help fund what is an essential item for independent living. Many wheelchair users also regularly face problems gaining access to everyday services, and day-to-day tasks such as shopping or going out for a meal can pose insurmountable difficulties.

Most people with md will need some form of mobility aid as their muscles weaken, affecting their ability to walk or perform other activities. A full assessment of mobility needs should be carried out without delay leading to the provision of powered wheelchairs and other essential equipment fully funded and supplied by the NHS/Social Services.

The Disability Discrimination Act (DDA) 2005 should be fully enforced to help to ensure people with md are able to access public buildings, spaces and transport.

Step 4

Many carers urgently need improved support as people with md often rely on them to provide personal care.

Muscle disease often causes people to be reliant on carers or assistants who help with things like dressing,washing and going to the toilet. In many cases a parent, spouse or other family member acts as carer. Often these relatives are happy to provide the care, however, for others, this role inflicts a strain on their relationship.

Family members often provide valuable informal support and many do not need any intervention or additional help. For others, improved support is needed and carers' assessments should be provided without delay and their needs regularly reviewed, leading to comprehensive support being provided through Social Work Departments, including the provision of professional care assistants.

Step 5

Increased research funding, combining public and private sector money, is required to strengthen the fight against md; with a focus on research that develops new treatments, taking science from the laboratory to clinical trials with patients.

There is no known cure for md. Currently the MD Campaign is spending £2m on research into md and we have contributed to and supported many important studies.However it is clear that increased financial support is needed to develop treatments and conduct trials with patients that will improve people's quality of life and, ultimately, lead to effective cures.

The MD Campaign calls for the National Assembly to play its full part - with the private sector and ourselves - in supporting research and the development of research capacity in Wales.