Friday, 4 January 2019

What are the Guidelines

I had previously written to my mp regarding Lymphoedema and I received a response from them which I found very good, in this letter the MP discussed something about internationally recognised guidelines when it comes to diagnoses treatment and support of Lymphoedema. so over the last few weeks, I've been looking into what these are and have found these very frustrating,

 Heres the link to the British Lymphology Society standard of practice  https://thebls.com/public/uploads/documents/document-64791511440750.pdf

If these are internationally recognised guidelines then something is wrong since my diagnoses I was referred to a nurse but was discharged cause I couldn't wear the garments on offer but no alternatives were discussed and no support groups were ever mentioned to me. The self-care I had to learn myself and this is very important for daily living. Luckily there are many different pages and blogs from fellow sufferers and social network is also a good source of knowledge learning from others for me was vital to understand more about the condition I was born with. what can also help would be a support group national or local groups are available 

  The L-W-O website gives non-medical tips and advice and is written entirely from a patients point of view. https://www.lymph-what-oedema.com and they also have a facebook community and facebook page

The LSN is a registered charity run by people who live with lymphoedema and is the largest information provider about the condition in the UK. Visit their website for more information www.lymphoedema.org


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