Supporting Someone with CMT: A Guide for Carers
Carers Week 2026 was a timely reminder of just how many people across the UK are quietly caring for someone they love, without pay and often without enough support. Behind many people living with Charcot-Marie-Tooth disease, there is someone who shows up every day to help. A partner, a parent, a sibling, a close friend. Someone who has taken on a role that makes an enormous difference to the person they care for.
If that sounds like you, this post is for you.
Are you a carer?
Many people who support someone with CMT do not think of themselves as carers. But if you regularly look after someone because they are ill, disabled, or need extra help as they grow older, that is exactly what you are.
Caring takes many different forms. You might help with washing, dressing or taking medication. You might be the person who organises and travels to hospital appointments, does the shopping, handles the cleaning or manages the household finances. You might sit with someone to keep them company, or make sure they are never left alone when they need watching over. There is no minimum threshold. All of it counts.
Looking after yourself
Caring for someone you love can be one of the most meaningful things you do, but it can also take a real toll on your own health and wellbeing. It is important that you do not lose sight of your own needs along the way.
A good starting point is letting your GP know about the extra pressures you are carrying. Caring responsibilities can affect both your physical health and your emotional wellbeing, and your GP is there to support you too.
Getting a carer’s assessment
One thing many carers are not aware of is that they are entitled to a carer’s assessment through their local council. This is a free conversation focused entirely on you and your needs, not the person you care for. Your local council will use it to decide what support they can offer you, whether that is practical help, financial support, or simply a bit of breathing space.
The assessment is usually a face-to-face meeting with someone from your local council, or from another organisation acting on their behalf. If you live in Scotland, this is called an Adult Carer Support Plan, though your council may still use the term carer’s assessment.
We are here for you
At CMTUK, we believe that supporting carers is just as important as supporting those living with CMT. That is why we have a monthly online carers support group, a friendly and welcoming space where you can connect with others who truly understand what it is like. Whether you are looking for practical advice, want to share your experience, or simply need a place to be heard, you will find a warm welcome there.
Our next meeting is Thursday 25 June at 7pm and takes place online. We meet once a month, and if you are already a CMTUK member you will receive your invite in advance.
If you would like the link to join, just get in touch and we will send it straight over.
Contact us at: enquiries@cmt.org.uk
We also have a carers leaflet available to request, which covers a range of topics in more detail, including what a carer’s assessment covers and how to prepare for one, the Adult Carer Support Plan in Scotland, what you need to know about your rights as a carer, and helpful resources and contacts for further support.
To request your copy, or if you have any questions at all, you can reach us in two ways:
📞 Helpline: 0300 323 6316
📧 Email: enquiries@cmt.org.uk
You do not have to navigate this alone.