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Information for carers

Often the role of carer falls on family members, either voluntarily or because service providers and family members assume that this should be the case. Adopting the role of a carer should be a choice and people with MS and their families are entitled to decide that this is not something that they would like to take on. The following links are for people who are acting as carers.

Carer charities

Carers Trust
Provides information, support and practical help to carers through more than 100 independently-managed Carers Centres. This new charity was formed in April 2012 from the merger of Crossroads Care and The Princess Royal Trust for Carers.
In Scotland the organisation is still be known as the Princess Royal Trust for Carers.

Carers UK
Provides information and advice about caring and practical and emotional support for carers. Also campaigns to make life better for carers.

Young Carers
A site for people under 18 who who are caring for someone. Includes information, discussion boards and chatrooms.

Other sources of information

Carers Direct
A section within the NHS Choices website with information on well-being for carers, claiming benefits, advice for young carers and contact details of local authorities

Expert Patients Programme (EPP) Looking After Me course
A free course for adults in England who care for someone living with a long-term health condition or disability. It covers making time to look after the carer's own health needs and helping carers to take more control of their situation

Caring with Confidence
A free programme for carers that can be accessed through local group sessions or at home using workbooks or the internet. The course consists of a set of seven sessions designed to help the carer with the skills and confidence needed to fulfill their very demanding role

Carers Week
Annual awareness raising week. In 2013 the dates will be 10-16 June.

MS Trust links

Open Door, our quarterly newsletter has included several articles on people who have taken on the role of carer.

Living with MS
Beth McGowan on caring for her husband

Coming to terms with MS - a partner's perspective
Lesley Crawford on being a carer for her partner

Defining boundaries
Neurology nurse Lynda Hind discusses the distinction between partner and carer and some of the issues to consider before taking on the role

Living with progressive MS in the family
The impact on families of caring for someone with progressive MS and the transition to respite or long-stay care

Books for people caring for people with specific symptoms

Are you sitting comfortably..?
Simple changes in posture can have a great impact on anyone who spends most of their day sitting down and help them to remain as healthy as possible. The aim of this book is to provide basic information on helping people maintain good posture when sitting.

Falls: managing the ups and downs of MS
This book looks at factors that increase the risk of falling and includes tips and suggestions for reducing the dangers.

Spasticity care pathway

A UK consensus on the management of the bladder in multiple sclerosis
These books have been developed for health professionals with input from people with MS. You may find it helpful as it provides an overview of what should be available for the management of these problems. Don't just live with these symptoms ask for help from your MS specialist nurse or GP.

Full list of MS Trust publications