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.
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 writes about caring for her husband
- Coming to terms with MS - a partner's perspective
- Lesley Crawford also wrote about 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.
Sources of information
- Carers Week
- Annual awareness raising week that takes place in June. In 2011 the dates are 13-19 June.
- 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
- Caring for someone
- A section of the Directgov website with information on carers' rights, benefits and assessments
- 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 carers own health needs and helping carers to take more control of their situation
- Caring with Confidence
- A free programme for carers to help build on skills and knowledge which can be accessed through local group sessions or at home using workbooks or the internet. The course consists of a set of seven 3 hour sessions cover subject designed to help the carer with the skills and confidence needed to fulfill their very demanding role
Carer charities
- Carers UK
- The leading campaigning, policy and information organisation for carers.
- Crossroads Association
- Provides practical support to carers in the home and with respite care.
- Princess Royal Trust for Carers
- Provides information, support and practical help to carers through more than 100 independently-managed Carers Centres.
- Young Carers
- A site for people under 18 who who are caring for someone. Includes information, discussion boards and chatrooms.