Putting you in the heart of the rare community – CMTUK
Estimated reading time: 5 minutes
Patient advocacy groups deliver their top three unmet needs and main asks of industry to best serve their rare community. This week’s insights come from Simon Bull, chief executive, CMTUK
To reach and offer information and support to everyone affected by Charcot-Marie-Tooth disease living in the UK.
CMTUK supports those living with Charcot-Marie-Tooth through a telephone help-line, online support groups, publications, conferences, social media and a website. The charity makes small grants for research from funds donated for that purpose, attends conferences and works with CMT patient associations from across the globe. They have a CMT Kids programme that offers online meet-ups, days out and weekend activity trips and a CMT Big Kids programme offering similar activities for young adults.
Charcot-Marie-Tooth (CMT) is a group of progressive, mostly hereditary (genetic) conditions that damage the peripheral nerves. These nerves are responsible for passing on commands from the brain to the muscles in the limbs, and for passing information back to the brain about sensation (pain, heat, cold and touch). It causes the muscles in the arms and legs to waste which affects walking, standing and balance. Hand function and strength are also affected. There are over 130 identified types of CMT with some types affecting voice, hearing, sight, the heart and respiration.
What are your top three unmet needs or main asks of industry to best serve your rare ecosystem?
Awareness and understanding of CMT, the different types, symptoms and treatments, and of CMTUK, amongst healthcare professionals (GPs, physiotherapists, occupational health practitioners, podiatrists, dieticians etc.).
Greater awareness and understanding should work both ways allowing us to give health professionals the information they need in order to give the appropriate and available medical advice and support to those living with CMT, and for them to put those patients in touch with CMTUK who can give them help and support through the charity’s services. To achieve this CMTUK would work with healthcare professionals to understand what would assist them to carry out their roles. This could be done with the use of surveys, one to one conversations and interactive on-line discussions that inform the production of resources including leaflets, webinars and (where possible) accredited courses.
CMTUK has a membership close to 2,000 and is contacted by others (non-members) for information. The prevalence of CMT, allowing for the different types, is generally accepted as 4 in 10,000. That equates to approximately 25,000 people in the UK. Reaching and supporting more people affected by CMT is, perhaps, the most important aim of the charity alongside giving existing members the best support for them.
Outreach and community activities are an important part of this. Members often express how valuable they find time spent with others living with CMT, preferably in person but also online. CMTUK has a network of support groups and aims to develop this further when resources allow. Developing both the online regional based support groups and the carer’s support groups (children’s and adult’s) along with having more in person events have the potential to benefit many more people.
In person events have a greater impact on individuals and can be structured as information sharing days with healthcare professional involvement, or as less rigid days out such as visiting gardens, arboretums and other places. To achieve this CMTUK would require resources to develop such a programme including the employee time needed to develop the programme to include both online and in person activities across the UK.
CMTUK has operated for many years and is celebrating 40 years of supporting people this year. Starting with meetings in people’s homes helping each other, we have developed to where we are now. There is scope for doing more and the charity is open and keen to work with experienced leaders through mentoring and advice to take the organisation forward.
Connect with Simon
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