MSA Trust

10. Care Support

Everybody living with MSA will, as time goes by, need increasing amounts of help with their personal care.

It is important to accept that it is not usually realistic to rely on just one person (even if they are your partner) to provide this care. Doing so could leave both of you vulnerable, which may then result in a crisis and decisions about how your care is managed could then be taken out of your hands.

Open discussion with those close to you is important. Acknowledging the fact that someone taking on the role of a carer may change your relationship helps set some boundaries. Being a carer is a different role to being a partner, relative or friend and it can be challenging to fulfil both roles. The status of each of you as a partner, relative or friend needs to remain despite your care needs. We have a factsheet on ‘Relationships, Sex and MSA’ that you may like to take a look at, it can be downloaded here – Those around you will want to help, and there will be many ways in which they can do so, but this should be as the result of discussion and agreement and should be reviewed as your needs change. No one person should take on the sole, ongoing responsibility for supporting you with your personal care. 24/7 support is highly likely to be needed as your MSA progresses.

Many informal/family carers are adamant that they can, and will, ‘cope’, but you need to think about the times when they may be injured or unwell, or just exhausted. Having back up support from people who already know your routines is incredibly helpful and reassuring and can prevent you having an emergency admission to a care home or hospital should a crisis arise. Ideally your ‘back up support’ should be a mixture of other family members and professional carers, all of whom should know your wishes and routines and how to use any equipment you may require. Do not wait until your MSA progresses to an advanced stage, or a crisis arises, before thinking this through. We know that speech can be severely affected by MSA and will limit a person’s ability to communicate easily, meaning your wishes may not be understood in a crisis by those unfamiliar with you.

Building a consistent ‘circle of support’ (meaning a circle of family, friends and professionals) is key and will help ensure that the right issues are addressed at the right time. You may have to be proactive in contacting professionals – it is better to plan ahead than have to be reactive once a need has arisen.

Care support can be accessed in a variety of ways and this may depend upon your needs, your finances and your location. We can discuss this with you. Usually a good starting point is to request a ‘care needs assessment’ from your local social services. This will help identify the issues that need addressing and should result in a written care plan that identifies how needs will be met and by whom. You can refer yourself for this assessment or you can ask one of the professionals involved in your care to refer you. Those providing informal care support to you can ask to have their needs assessed too in a ‘carers assessment’.

People living in England and Wales who have a primary health care need (meaning their care needs are complex, intense or unpredictable and a high level of skill is required to meet them) should ask about NHS Continuing Health Care (CHC) funding. Unlike social care in England and Wales this is not means tested. Through CHC funding, a fully funded package of care can be provided in a person’s own home or in a nursing home. We have a factsheet on this which can be read here –

Key Messages:

  • Don’t rely on just one person as a carer – build a circle of support
  • Be proactive in addressing your current and future care needs. Don’t wait for a crisis to occur
  • Requiring assistance may impact on your role as a partner, parent or friend but preserving these roles as far as possible remains important
  • Have a written, up to date, care plan.

The MSA Trust is here to support anyone affected by MSA. If you have any questions about the information on this page, please contact us and we will do our best to help you.