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.
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?
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 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."
- CMT UK website: http://www.cmt.org.uk/
- The drugs list mentioned in Tom’s story is linked to from the Medical Alert (http://www.cmt.org.uk/index.php?option=com_content&task=view&id=44&Itemid=132/) page in the 'About CMT' section of the CMT UK site.
- US National Library of Medicine, Genetics Home Reference: Charcot-Marie-Tooth - http://www.ghr.nlm.nih.gov/condition=charcotmarietoothdisease/
How does this story relate to professional practice?
[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.
Content relating to the midwifery competencies in genetics will appear here shortly.
Learning Outcomes for GPs
Content relating to the learning outcomes in genetics for General Practitioners will appear here shortly.
Learning Outcomes for Medical Students
Content relating to the learning outcomes in genetics for medical students will appear here shortly.