In this section you will find information to help you care for the person living with MSA, while also looking after yourself. There are details about some of the services and support available from the government, statutory agencies, health and social care teams and other charities.
Our Carer’s Guide is a helpful booklet that provides practical advice, useful information and signposting to further sources of support for those caring for someone with MSA. You can request a copy from our office or read it in the ‘Living with MSA’ section of the website.
You will also find a helpful webpage in this section with a list of Carers specific organisations.
Remember, all of our information and support services are available to you as well, free of charge. Please take a moment to register with us or contact us if there’s anything we can do to support you.
Looking after yourself
It can be difficult to find the time or energy to look after yourself when you’re juggling caring responsibilities, perhaps along with family, work and everyday life. Caring can be physically and emotionally demanding and it is important that you look after your own needs as well as the needs of the person you care for.
Throughout our website we hope you will find information to help you with your caring role. You can read our Carers Guide for in-depth information and we have listed some of the key details here for you.
- The Trust’s MSA Health Care Specialists are here to help with your needs as well as those of the person you care for, so please do contact them. They are always happy to look at practical problems or sometimes the mixed emotions many carers face.
- Sharing your experiences with others in a similar situation can often help. You might like to look at the Support Group section which shows some of our upcoming Support Groups and webinars.
- Carers have a legal right to an assessment of their own needs, if you are looking after a relative or friend who cannot manage without your help. A carer’s assessment is your opportunity to let the local social services department know about the things that could make caring easier for you.
- If you need to take some time to talk about how you’re feeling, you can call the MSA Trust on 0333 323 4591. Staff are always happy to listen and to help with information or signposting.
Keeping well yourself can be difficult because of the physical demands of caring. It is so important to look after your own health to help you maintain your emotional and physical strength to cope and carry on. We have listed a few suggestions to help you keep well:
- Eat well – a healthy well-balanced diet will help keep your energy levels up
- Stay fit –a little fresh air and exercise, as much as you can manage
- Relax – read, ring a friend, listen to some music – some time for you
- Training – look for local courses, e.g. lifting and handling techniques
- Have a break – even a short break from caring will make a big difference to how you feel and your energy levels
- Holidays – We have a Travelling and MSA factsheet which has information on preparing for a trip and details of insurance companies who have covered people with MSA in the past.
- Asking for help – Make sure you reach out to other family members, your friends, people in your community, health care professionals or us at the MSA if you need help. We understand this can be hard to do, but it’s important to do so if you are struggling and need further support.
Benefits and Financial Help
There are a range of benefits to support people with a serious illness and those caring for them. The Trust has provided a brief guide of what is potentially available and who might be eligible for support here. There are more in-depth factsheets about specific benefits (e.g. Attendance Allowance and Personal Independence Payments) available in the Living with MSA section of the website.
Our Social Welfare Specialists are available to support you with any queries you have about benefits and entitlements. If you would like to be put in touch with them please contact us on 0333 323 4591 or email support@msatrust.org.uk. For more information about the Social Welfare Specialists role please click here.
For more information about help available to you, the following organisations offer extensive information and support: