MSA Trust

CARERS WEEK 2014: Brain disease charity urges carers to find out about their rights

For immediate release: Friday 13 June 2014

CARERS WEEK 2014 – Brain disease charity urges carers to find out about their rights

The Multiple System Atrophy Trust (MSA Trust) is today (13/06/14) launching a guide for carers to help them access the help and support they are entitled to.

The guide provides useful information that carers may not be aware of, for example, that many GPs offer priority appointments for them and that carers have a legal right to a carer’s assessment by their local authority.

The guide also covers issues such as where to find help, practical, physical and emotional support, the role hospices play and useful contacts.

While the guide has been written with carers of people who have multiple system atrophy (MSA) in mind, and has sections on accessing specialist neurology help, most of the information would be useful to all carers.

MSA is a rare neurodegenerative disease that results in premature death. It leads to problems with movement, balance and automatic bodily functions such as speech, bladder and blood pressure control. People with MSA sometimes say this devastating disease can result in them becoming trapped in their own body. There is currently no known cause or cure for MSA which affects around 3000 people in the UK (approximately 5 per 100,000).

Head of Information and Services at the MSA Trust, Neil Hunter, said today:

“Carers do a fantastic, often unrecognised and unpaid, job. Many of them do not know that they are entitled to benefits and support and we want to urge them to find out about their rights and access help.

“MSA is an extremely debilitating disease and people often need 24/7 care, especially towards the end of their illness. Our concern is that if carers do not look after themselves they will be unable to look after their loved ones. It is essential, therefore, that they try and access practical, emotional and physical support.”

GP medical journalist and MSA Champion, Dr Sarah Jarvis, commented on the guide:

“People are living longer than ever before. While this is something to celebrate it also presents us with a huge challenge as more and more people will become dependent on carers for day-to-day living.

“As a GP I see the strain placed on carers every day. The sad fact is, if carers don’t look after their own health, they will be unable to care for others. We must get the message out there that support is available and carers have a right to it.

“I’m really pleased the MSA Trust has produced this guide. It will be invaluable for all carers, not just those looking after people with multiple system atrophy.”

The guide is available, free of charge, from the Trust (please email office@msatrust.org.uk for copies) or it can be downloaded from the website.

―   ENDS   ―

For more information please contact:

Franca Tranza: 07718 426076 (Head of Communications)

Neil Hunter: 020 7940 4666 (Head of Information and Services)

Notes for editors:

Please find a link to the guide below:

https://www.msatrust.org.uk/wp-content/uploads/2014/06/MSA-Trust-Carers-Guide_v1.0.pdf

For more information about MSA and the Trust:

The MSA Trust is the UK’s only charity that supports people with MSA and their families and carers. It relies entirely on voluntary donations. It provides a telephone and email support service run by three specialist nurses and it is the primary UK funder of research into MSA.


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