All Stories

Tom’s story: the role of support groups in providing information

The experience of one person with Charcot-Marie-Tooth, an autosomal dominant condition.

Tom provides a relatively upbeat account of his experience of having Charcot-Marie-Tooth (CMT) disease. Although he highlights a lack of knowledge and understanding about the condition, he clearly now feels well supported by CMT-UK.

Toolkit

  • reflection Point for reflection

    Tom says ‘Fortunately, my family are not affected by CMT...’ Do you think you would feel the same, if you were Tom? To what extent do you think the support he feels he and his family have from CMT UK has influenced how he feels about his condition?

  • Activities Activities

    As part of the ‘Managing CMT’ pages (accessed from the ‘About CMT’ tab), the CMT UK website lists a number of ‘Health care professionals that have particular relevance to people with CMT’ . Currently nurses and midwives are not included. Look at the other information available in this ‘Managing CMT’ section, for example general health tips, foot care and breathing and also at the issues raised in this story. Do you think you could justify nurses and midwives being included on the list based on what you have identified?

  • quotes Quotes to reflect upon

    "We have discovered a very large lack of knowledge about CMT in the whole of the medical profession when talking to doctors, nurses and other relevant health care workers. All this is available on the internet and CMT UK’s website."

  • Further Information Further Information

How does this story relate to professional practice?

  • cogs Nursing Competencies

    [We have linked this story to the Nursing Competences in Genetics (NCG) for nurses, midwives and health visitors. Further information on the competence frameworks can be found here]

    Tom’s story highlights the importance of being able to access credible, current information (NCG 7). To be in the position of being able to access and communicate accurate and current information about a condition however, the health professional must first recognise an individual’s or family’s need for that information, and be aware of his or her own limitations in providing it.

  • cogs Midwifery Competencies

    Content relating to the midwifery competencies in genetics will appear here shortly.

  • cogs Learning Outcomes for GPs

    Content relating to the learning outcomes in genetics for General Practitioners will appear here shortly.

  • cogs Learning Outcomes for Medical Students

    Content relating to the learning outcomes in genetics for medical students will appear here shortly.

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