Getting help and support
Help is out there.
There are organisations that can put you in touch with other people in the same situation, give practical help or simply listen. This page has information about the support you can get nationally and in your local area. Find out about:
- Carers' assessments
- Local carers centres
- Other local organisations
- National carers organisations
- Getting help in an emergency
- Online help to make things easier
- Help from the MS Society
If you provide 'regular and substantial' care for a family member or friend with MS, you have a legal right to ask your local social services department for a carers' assessment. The assessment should look at:
- How you feel about your caring role and whether you are coping
- What help you might need to continue caring
- Your health and wellbeing needs
- Your work, training and leisure interests
- Emergency planning
The assessment is your opportunity to tell social services about the things that could make caring easier for you. You could be offered access to respite care or other support, or that may come through a community care assessment of the person you care for. You can request a carers' assessment regardless of whether the person you care for has been, or wants to be, assessed themselves. Usually it's best to make sure both of you are assessed so social services can get the whole picture.
You should be reassessed annually, or before that date if there has been a change to the amount of care you provide. Contact your local social services department to request a carer's assessment, and read about what assessments involve and how to prepare for them.
There is a UK-wide network of local Carers Centres and services that offer support and information for families and carers.
Each centre delivers a wide range of local support services to meet the needs of carers in its community. These range from support services for you as a carer, or for the needs of the person you care for. They can also inform you of the services that your local authority may provide.
Carers Centres can assist you in getting information regarding health issues, entitlements, mobility, grants for short breaks and holidays, equipment and emotional support.
There are local organisations, services and groups all over the UK that support carers in their area. Your local social services department and carers centre will have details of what services are available near you. Alternatively, enter your postcode on the Carers Direct website to search the comprehensive directory of local services and support groups.
A national charity providing information and support for carers, via their adviceline (0808 808 7777), online forums and publications. See Carers UK Scotland, Wales and Northern Ireland for nation-specific information for carers.
A national charity formed by the merger of Crossroads Care and the Princess Royal Trust for Carers. Carers Centres and local Crossroads Care schemes are Network Partners of Carers Trust. Crossroads Care schemes provide flexible breaks for carers at home. Together with carers centres, they ensure that information, advice and practical support are available to all carers across the UK. (Note: Crossroads Caring Scotland and Crossroads Caring for Carers in Northern Ireland did not merge and still operate as separate organisations).
Online community for young carers provided by Carers Trust. Includes chat rooms, discussion boards and advice from qualified youth workers.
Information, support and advice on all aspects of caring and looking after yourself from the NHS.
Joining a 'carers emergency card' scheme might help relieve some of the worry in the event of an emergency. On registering with a scheme, you will think about and draw up an emergency care plan, with help from a skilled worker. If trouble strikes, the scheme would use your plan to make arrangements for replacement care for the person you care for. Carers emergency cards aren't available everywhere, so check with your local authority or Carers Centre to see if there is one operating in your area.
If you're new to caring, or even if you've been a carer for years, here are a few online resources that might help to make things easier:
- Share and organise care and support among family and friends by using Jointly, a website and mobile phone app provided by Carers UK, developed by carers, for carers.
- Carewell - encouraging carers to make one or two small changes to help them care and cope better. Provided by BUPA in partnership with Carers UK.
We've got a number of publications specifically for the carers and families of people with MS:
- Caring for someone with MS: A handbook for family and friends
- MS in the family: A man's guide to caring for someone with MS
- MS in your life - A guide for young carers
There are many other publications that give more detailed information about MS and specific aspects of living with the condition, and also about the help that is available from external organisations. Order copies of the above publications and many others from the online shop, or contact the Information team on 020 8438 0799.
We can provide grants for things like short breaks, holidays and respite care, regular activities, personal development including training. See the page on financial support for carers for more information about how we can help.
Offering a free and confidential listening ear, the MS Helpline is available for carers and families and anyone affected by MS. Call the Helpline on 0808 800 8000 or email firstname.lastname@example.org.
Learning events for carers happen around the UK to help family members and friends better understand MS and increase confidence in their ability to care. For more information contact your local MS Society branch.