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Thank you to everyone who took part in our recent survey – we received over 250 responses from people living with CMT in the UK, which is a great response.

During September 2021, we asked the CMT community to take part in our post-lockdown survey.

The results are now in and we would like to share them with you during CMT Awareness Month (October 2021)…

 

Here are some of the key findings:

  • 77% felt their CMT symptoms worsened due to lockdown (30% said ‘considerably’)

We asked people living with CMT in the UK whether their CMT symptoms worsened due to lockdown. here is the graph

  • The top 3 reasons for symptoms worsening were:
    • Not able to keep as active (42%)
    • Couldn’t get support from a medical professional (17%)
    • Felt isolated (16%)

Graph showing why people living with CMT in the UK thought their symptoms worsened during lockdown

 

  • During lockdown, the community got the following help from medical professionals:
    • 48% got help from GPs (45% remotely)
    • 40% got help from a neurologist (32% remotely)
    • 24% got help from a physiotherapist (13% in-person)
    • 22% got help from a podiatrist (with the highest in-person percentage of 18%)

graph showing how people living with CMT in the UK had access to advice from a medical professional during lockdown

  • Once lockdown eased, the community got the following help from medical professionals:
    • 54% got help from GPs (14% in-person)
    • 44% got help from neurologists (20% in-person)
    • 33% got help from a podiatrist (30% in-person)
    • 27% got help from a physiotherapist (21% in person)

Graph showing how people living with CMT in the UK gained access to advice from a medical professional once lockdown eased

  • The top 5 things that helped the community to get through lockdown were:
    • Exercise (30%)
    • Access to CMTUK’s Facebook group (22%)
    • Friends and family (14%)
    • Access to medical professionals (12%)
    • Access to support groups (11%)

Graph showing what helped people living with CMT in the UK get through lockdown better

We also received lots of great comments on how CMTUK is supporting its members as well as what we can do to help further.

Here are some of the replies displayed in a word cloud.

Responses from people living with CMT in the UK to the survey on what CMTUK could help with more

Some of the comments for suggestions included:

  • creating a directory of specialist medical professionals and suppliers (such as footwear)
  • raising more awareness of CMT
  • highlighting coping mechanisms
  • how to access more specialist support
  • access to more local groups

We will be addressing these separately in a future issue of our member magazine, ComMenT.

We also received lots of positive comments too, such as:

  • The CMT group is a fantastic support.  If I need anything, the members are there.
  • It’s good to know help is available from CMTUK if I need it.  Thank you
  • The charity has great advice on its website
  • Just keep doing what you’re doing
  • All the help was there when I needed it, through phone, support group meetings and Facebook

As a charity supporting the CMT community in the UK, the survey results are extremely useful, highlighting areas where we can continue to support our members as well as looking into areas where we can strengthen our support.  We also acknowledge that the past 18 months or so have been extremely tough for the community.  We are always here to support you.

Thank you.

Simon Bull
CEO, CMTUK

 

Last Updated: Friday 1st October, 2021