Lymphoedema advice from a patient perspective

Lymphoedema advice from a patient perspective

Hi everyone . I was diagnosed with secondary lymphoedema in both of my legs back in 1995 - twenty years ago and have faced all the usual struggles coming to terms with a long term medical condition that changes every aspect of your life . During that time I've run support groups for patients and have talked at conferences as an "expert" patitient. I'm a firm believer in treating the person as a whole as I don't believe that just treating the symptoms of lymphoedema fulfills patients needs to be understood . I'd also like to see greater cooperation and linked care between lymphoedema patients who have other major illnesses so that they are not treated in isolation . If anyone needs any advice from a personal patient perspective then I'll try and help or I'll signpost you to people that I think could offer you professional advice

7 Replies

  • Hi Khp22 welcome to the forum. Are you a member of the LSN? it would be great to know what conferences you have spoken at. Sounds like you have been busy.

  • Thanks for your welcome . I was a member of LSN but this has lapsed sadly following the recent death of my husband but I will be renewing this as soon as I can as I know how valuable this support is .

    Ive run support groups in Sheffield,Chesterfield and Doncaster since the mid nineteen nineties and I've spoken at conferences for health professionals in the Doncaster area as part of the education programme supported by Macmillan .

    I was also fortunate to feature in the Kelsey Smith training video that was produced several years ago . I don't profess to be an expert but I hope I can give advice from a patient perspective after having the condition for a long period of time and I know from personal experience that the question of "what will happen to me in the future " often worries a lot of people with long term medical conditions

  • Thanks kHP22 sorry to hear about your recent loss - I hope you will be able to join us again soon. I am sure that you will be a valuable resource for the forum

  • Hi Lymph primary, both legs/feet, arthritis hips, spine. Heart condition.

    Phoned a hotel in Yorkshire. No lift, I said I could get up one flight stairs with a struggle. Response "we allocate the rooms the day you arrive" I said I need to know if I can have a room on first floor. Reply " can't help you, goodbye" Unbelievable.

    Next web site listed rooms for disabled, shower etc. Only photos of bathrooms showed showers over bath, I phoned said I need walk in shower. I said the page did not have facility to check what was offered. The man said I don't know.

    Why are hotels so unhelpful. What happened to disabled regulations???????

    I tried trip advisor etc

    I only wanted three nights accommodation, left feeling like second class citizen.

    Who can I complain to????????


  • Hi scotty Meg

    I really sympathise with you . It shouldn't be so complicated if people can give a bit of forethought to the needs of people with disabilities . I've had various experiences when I've been travelling . One hotel abroad automatically changed my room for me into a disabled one when they saw that I had brought a wheelchair with me . I actually needed the chair for distance walking and could cope with a normal type of room most of the time so I wanted to leave the disabled rooms for others worse off than myself but I wasn't given the choice they just assumed I'd need one . Another time when I stayed in London we requested a ground floor room as there was no lift but we didn't know until we got there if we had been given the room - all very frustrating .

    The only time I've complained was when A major shipping company changed their policy and said that anyone travelling with a mobility scooter had to stay in an accessible room . As there are fewer disabled rooms on board a ship I felt this restricted the choice of rooms that we had and I felt it might be a way iof restricting the number of disabled people on board . I wanted to take my scooter which was small into a normal cabin . I complained to my local mp and the minister for disabilities . My mp was brilliant and passed my letter on . The minister never replied .!! In the end I did get a concession to travel so complaining can work but you need it to be a national thing with regard to hotels . In your situation I think I'd contact your local mp and tell them about your issues asking him or her to give you some advise about who to contact to bring about some change . You can of course use trip advisor to give a review so that others are aware of the lack of facilities and hotels tend not to like negative feedback . The only thing you have to bear in mind is to stress that's it's your own personal opinion as others may have different views . A formal letter to the management of the hotel should also be used as this makes the complaint official and if they are decent then they often are prepared to listen . If we don't complain however then we will never get any change

  • Hi, My mum was born in London. My sister andI are planning a trip over and to Paris. She has been often. I have bilateral lower lymphedema. She insists that people with disabilities have a harder time than in America. Go online to John Sage Travel. He is a in a wheelchair had an accident at 21 diving head first into water. Since he has been traveling around Europe and runs tours. Knows where to stay, how to get to attractions etc. I hope this helps. You can also get a monthly newsletter. I have not gone yet however we've found a lovely hotel that my sister has stayed at. I've contacted and received information from the department inLondon that deals with people with disabilities, I can't recall the name.Wecare trying to do it ourselves . Maybe take a few tours from his agency. I'm sure it's expensive.We're trying to figure it out. However when I spoke with one of the agents she was happy to talk and give me some info. Seems crazy that you need to find out from an American travel agent. It's a small world. I hope this helps.

  • thank you for your reply, I have in fact rung and asked for the managers name and will write, will let you know his response if you are interested. Another thing I am going to complain about, the confirmation e mail came thro. The house number was wrong, the street name was incorrectly spelt. the town I live in was totally wrong and the postcode had an incorrect letter. Good job the email came to the right addy.

    I am also going to point out all the errors in that when I write. I have not been to the hotel yet due 9th Oct, maybe not diplomatic to complain to MP till I have come home. They might spike my breakfast ( Joke)

    thanks for your prompt reply and advise



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