No lymphoedema treatment due to historical cancer - LSN

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No lymphoedema treatment due to historical cancer

elliejoy-warwick profile image
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My mother had bladder cancer when she was 39 in the late 70s and then breast cancer in 2001. She always had swollen knees and ankles (I think this is hereditary) but recently has been suffering with very swollen legs. She is also diabetic (diet controlled) and her chiropodist was worried about the redness and blistering appearing on the front of her legs. She finally persuaded the GP to refer her to a consultant in local hospital who immediately said it was lymphoedema. He contacted the dermatology department who informed him that the best clinic was St. Giles in Lichfield, Staffordshire. He wanted her to go there for assessment and then be treated at a local hospice. This was in August 2016. We waiting for the appointment, only to be told that neither St. Giles or our GP practice could provide transport - this is needed as she now needs a wheelchair when going out, which she does very rarely. She asked the GP to contact the local hospice to ask for treatment there, only to find out that they won't treat her because the cancer is historical. The GP agreed to ask District Nurses to attend my mother and they now come in three times a week to dress her legs, however, they are not experts in this field and are mostly undecided how to treat her. All this has taken several months and she is still in a lot of discomfort. She decided to obtain a quote herself for a private ambulance to take her to Lichfield, but this was very expensive and so out of the question. I cannot believe that the local hospice, Myton Hospice which has a lymphoedema clinic, will not treat my mother. I am trying to ascertain why and will be writing a letter to them very soon, and also send copies to other health organisations here in Warwickshire. I wondered if anyone else has had this same situation. Is this the normal procedure for lymphoedema sufferers? (Sorry for the long post, but I am so annoyed).

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elliejoy-warwick
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Lynora profile image
Lynora

I am perplexed as to why the local hospice is refusing treatment. Have you asked to speak to a team member to find out what exactly is going on and who declined the referral? Are the DN's treating the skin because it has now broken down and the blisters leaking? Has your Mum been diagnosed with cellulitis?

elliejoy-warwick profile image
elliejoy-warwick in reply to Lynora

Thanks for your reply. My mum did have a bout of cellulitis back in the 90s - it was on her forehead and nearly went down into her eyes! I did fire off a short email to the hospice after hearing their decision and someone replied asking me to contact them. However, I refused this as I work with a colleague who manages the health committees for Warwickshire County Council and I want to write my letter and copy in several organisations. Everyone I have spoken to about this - colleagues, friends, etc. - are also flabbergasted that my mum cannot have treatment. The DN's are treating the skin, she had a very large blister on her right leg that has now gone down after the pads and bandages have been applied, and there are small pimples on her left leg. Because of her situation, my dad is her carer but he has his own medical problems and I work full-time so can only help them so far. Let's hope I can get some answers and assistance soon. I may ask a private practitioner for a quote for the massage, etc.

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