Support for lymphoedaema

How do I get effective support.

I saw a lymphoedaema nurse and a sleeve was prescribed, swelling 40%. Appointment 3 months later, swelling now 45%. Prescribed a flat knit sleeve. This has never been comfortable.

End August request by doctor for LDM. Message telexed to hospital and lost. Wait 14 weeks. So when I heard nothing contacted hospital and they told me message forwarded and lost, back to doctor, telex sent again, in November. Another 14 week wait. Have so far paid for 8 sessions of MLD. Saw specialist nurse as the physio thought the sleeve was wrong. Prescription telexed to doctor end November, sent to chemist 2 weeks later. Now lost in transit. Also appointment with specialist nurse for March cancelled until June as I asked to see her. Swelling reducing with MLD but it is costing more than I can afford. Reduction in swelling about 10%, so it is effective, but slow.

Is there anywhere I can get help? Member of Benenden Hospital but support refused.

18 Replies

  • Did you discuss support with your MLD therapist as they should be able to do a prescription for you.

    They could get it custom made for you

    You just need to get your doc to do it privately for you.

    I know what you mean it's been 18 months since I got any appointments and my health has suffered as a result

  • Call the Lymphoedema Support Network and ask for their advice. It sounds as though you need intensive treatment, but if this is not available where you live, a compression wrap may be the answer to get the arm volume down. You can manage this yourself at home, but need the support of a clinic to get the correct sleeve when the arm is smaller.

  • As whitesugar says contact the Lymphoedema Support Network. They have a telephone help line as well as a website.

  • I agree, do contact the Lymphoedema Support Network and talk with someone. I found them very helpful and sympathetic.

  • Please do give us a ring if we can be of any help

  • Hi gillannan, sorry to hear about this. I have heard quite similar stories of administrative mess-ups.

    Regarding compression: made to measure flat knit (and not circular knit) is indeed the correct type of compression garment for lymphoedema. It is not uncommon to have the first garment not fitting right and adjustments to be made so do not get discouraged if it does not fit right straight away or is uncomfortable but keep asking for adjustments you feel necessary if too loose, too tight, etc. It is a good way to reduce the swelling and then to keep it at minimum.

  • I have many problems with my sleeves even though I am measured i get 3 sleeves often different sizes I have to keep requesting appointments to see the nurses ! I am due next week ! I think my arm swelling changes regularly so not sure how this better managed persistence is key I think good luck

  • So sorry to hear about your struggle to get help, but please don't give up.

    The NHS needs to be made to realise that their lethargic attitude to all matters relating to Lymphoedema and in particular MLD, is causing a lot of unnecessary suffering and heartache.

    The LSN is a good place to start.

    Good luck,

  • I was diagnosed some years ago but had a scan at St Georges in June 2014 which confirmed primary lyphodema in my stomach and legsmainly. I was sent for stockings to a local hospice about 8 years ago and never been seen since, have asked to be measured and the local chemist has tried but the stockings do not fit properly. The scan was only because we are helping with research at St Georges as a family. I have had several bouts of cellulitis and have asked my GP if I can be referred for treatment but am told they cant as it costs too much. My grandchildren suffer more than I do and I only hope they get better treatment - at present they are under several specialists and thankfully seem to be getting treated.

  • Dear all

    It is a nonsense that simple things like telexing messsages go missing, information about our swelling gets lost, sleeves are wrongly prescribed etc, appointments months away, lack of specialist nurses and MLD, .... some of this is down to funding decisions but some is just careless. Thank goodness for LSN and their helpline, they also hold a register of MLD specialists.

  • Hello, what a travesty of care. I am very sorry to hear about your fight to even get the minimum standards of care. I take it you live in Kent or Surrey ?

    Once you have contacted L S N, you can send an email I am going to suggest you write a brief over view over the failures in care you have experienced and send it your clinical commissioning group.

    If you can afford to pay £ 15 to join L S N then I think it would be helpful to point out to your surgery that there is a free and accredited training module for health practitioners and take then in copies of L S N's exceptionally good newsletter.

    That move was well received by my surgery and several staff have now undertaken the training module. I know I now get better care locally.

    In the meantime is there somewhere you can get support locally ?

  • Sorry

    Kent or Sussex ?

  • Thanks for your help. I live in Maidstone Kent. I am a member of LSN and they are very helpful and stop me giving up....

  • Hello again, good but I see I haven't been much help at all. Sorry to ask f you support when that was the first thing you asked for in your posting.

    Do you know any other sufferers locally ? Is there a support group somewhere in striking distance ?

    Is your Lymphoedema secondary and

    If so do you have a Clinical Nurse Practitioner who isn't in charge of your L E treatment.

    I have met someone with L E who lives in Beneden and I know she too was having a real battle getting the right care.

    Sorry about the Spanish Inquistion but just trying every avenue to find a way forward.

  • Curiously I have just heard that Lipoedema U K is holding an informal Patient get together in Kent on Jan 16 th. Venue to be confirmed.

    Whilst I acknowledge you don't have Lipoedema I certainly met several Patients at both conferences that Lipodema U K have held with the dual condition like me.

    ( My Lympho- Lipoedema arm is severe. )

    Just a thought !

  • To a certain extent we only have outselves to blame. I have been having treatment in Europe, and no European medical service would dare offer such poor care as you received. They also live longer after a cancer diagnosis, but pay more for Govt. healthcare

    Is anyone up to it to bombard all our MPs with a request to provide adequate care? It's only by getting behind a cause and hammering away that we may get adequate care.

    At the moment I have given up fight and pay for MLD myself - but shall soon have to give that up.

  • Hi all, Wales and Scotland (and maybe Northern Ireland) have Standards of Care for Lymphoedema agreed by their Governments. This has led to services which are both improved and more consistent across the respective nations. Regrettably despite the best efforts of the sterling LSN and BLS, the Westminster Govt has not agreed to work towards this. So much for Cameron and his EVEL strategy. I would suggest that as many of as can contact our MPs about this as some of the stories on this forum really point up the inequity of treatment across the English shires.

  • I will write to my MP

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