Caring For Carers

An article in the Guardian yesterday brought to light shocking statistics about home carers in the UK. At the Muscular Dystrophy Campaign we are well aware that of the 6.4 million people who care for friends and relatives, a proportion of those are affected by neuromuscular disease or its related conditions.

This coverage stems from research at the University of Leeds, which finds that the government saves upwards of £119 billion every year as a result of these carers doing this job for family and friends. This is a vast saving, and largely goes without just reward to the many people who freely give up their time and resources. The fact of the matter is, in general, carers don’t look for any financial reward. They are caring for those they care about. As such we feel that respite care is the very least these people should receive.

Respite care provides temporary, short-term care for family members, freeing up the carer to take a break from this responsibility. It allows them to do anything from going away on holiday to simply being able to go to the shops. We feel that given the challenges of caring for a person with neuromuscular conditions, appropriate respite care should be easily available and open to all carers across the country.

In 2008 we found in our State of the Nation report that a shocking three out of every four carers received no such respite care, and we are disappointed to see that three years on research is suggesting there is little improvement in this area.

This is a problem the Muscular Dystrophy Campaign is keen to address and forms a vital part of our ongoing work to improve services across the UK, for those affected by muscle disease either directly as a patient, or indirectly as a carer.

If you would like any further information on this, or any of the other work we do, don’t hesitate to get in touch at


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