help

[unlucky]

does anyone know were i can get help for my lymphodema i have had it in my legs now for over 4 years and i cant get any help at all i have never recieved any treatment because my doctor says she doest understand it which is no help to me my legs are so painfull i have to use crutches all the time to get about

[yorkshireuk]

if you have a good vascular surgeon in your area which most do have they tend to have good links to a Lymphodema service. Not every area has one as I have to drive an hour and a half to mine. Thats because I have primary lymphodema which isnt accepted at most clinics.

[Gypsygirl2402]

Hi, I have the same problem, my gp threw his hands in the air and said he didnt know how to treat me ! and then insulted my husband when he said i need to go into full leg compression and the gp said "if you know so much why dont you be her doctor!!" the lymphoedema nurses wont treat me until my legs have healed and i have had ulcers for 4 years, its dragging me down, i have beern discharged by the nurses and told to get into my stockings, within a week of discharge i have cellulitis (for the 14th time!) and my legs are leaking a serous yellow fluid which i am now dressing myself, I am at the end of my tether!

[mldmassage in reply to Gypsygirl2402]

Where abouts are you based? would you like to private message me?

[unlucky in reply to mldmassage]

hi yes i would like to private message you..my email address is [e-mail] hope to hear from you soon

[unlucky in reply to mldmassage]

hi im in sandwich kent

[Gypsygirl2402]

is this message for me?

[LymphSuppNetwork Partner LSN]

Hi Unlucky

There is an on line training module for GPs on the subject which your GP could look at if they are interested - it can be accessed by going to BMJ learning chronic oedema and lymphoedema module.

If you give the LSN office a ring we can try and find out where your GP can refer you to for further help and send you out an advocacy pack which gives you info on how to get treatment in areas where there are no services. The office number is 020 7351 4480

[LymphSuppNetwork Partner LSN]

Hi Gypsy girl - wow your GP does sound quite unhelpful. Same advice about the training module that we gave to Unlucky but it does not sound as if your GP would be very interested! It is unacceptable for you to have cellulitis 14 times and I wonder if you are on the right treatment - go to the LSN website and print off the guidelines for treatment of cellulitis in lymphoedema lymphoedema.org/Menu3/2Cell... this is written by the leading uk specialists and bio chemists so he should not have a problem with it. Good luck

[Law_Student]

I am so sorry to hear of your plight. Unfortunately, printing off information and handing this to your GP may not help as your GP has to comply with NHS policies. It's obvious from the comments on this forum that many lymphoedema sufferers do not get appropriate care. There needs to be a commitment from senior NHS officials to help us. It's not really the fault of health professionals if they have little knowledge on how to treat us or the services are simply not available. The LSN is fantastic at providing relevant information to both sufferers and professionals and the advocacy pack is excellent. We all feel uncomfortable about making formal complaints against people who are supposed to be compassionate and caring. However, the reality is that many of us do not feel we are getting any care. Maybe in the New Year we should all start making formal complaints.

[Christo in reply to Law_Student]

Yes you are quite right - getting treatment and managing the condition is key - but if you have to deal with an ignorant medic/GP you are stuck. It is very much a postal lottery when seeking help. It is time there was a push to ensure the NHS treats this condition seriously. Why should we have to fight for everything - even to be diagnosed correctly?

The numbers of sufferers is increasing - especially secondary following cancer - yet the NHS is cutting back due to the economic problems.

We must unite in 2013 - make it a resolution to get Lymphodema taken seriously by the NHS.

Keep networking and supporting each other!

Cheers

Christo

[harpy1]

Rainham Healty Living Centre City Rainham County Kent Postcode ME8 8AA Telephone [phone] Fax [phone] Email [e-mail] Mobile [phone] Referral Contact Rosemary Sibanda

This is the contact No. for your area I believe for referrals. Contact Rosemary Sibanda and get advice. Then go to your doctor advising him/her that this is who you need to be referred to. Failing this then write email or telephone

Write to:

NHS England

PO Box 16738

Redditch

B97 9PT

Telephone:

0300 311 22 33 (Monday to Friday 8am to 6pm, excluding English Bank Holidays)

Email: [e-mail]

which is the new national complaints department for NHS England (it used to be known as PALs at regional pct offices). Hope this helps.

[Mon1caM]

I suggest you start by phoning the Lymphoedema Support Network (on 0207351 4480) and ask them for information about your nearest clinic that deals with your problem (is it cancer related or is it primary lymphoedema which is not cancer related). It depends on where you live, but I became desperate and asked to be referred privately for my first appointment with Professor Mortimer and his colleague, Dr Gordon, at Parkside Hospital in Wimbledon. I got an appointment within a couple of weeks! Of course, I had to pay (I am pensioner) but I felt it was worth it to be seen quickly as I was struggling and not getting the help I needed. Once I had been seen and they had given me a firm diagnosis and advised me how to manage it, and written to my GP, I asked them to arrange for me to be seen in their NHS clinic at St. George's Hospital - that took a bit longer, but I was in the pipe-line, so to speak. Since then, things have improved considerably and I have learned how to cope with it (primary lymphoedema both legs).

I also shared with the GP any information I got via the LNS which includes guidelines about how to treat it and how to treat cellulitis (infection and inflammation of the skin, both legs, with severe pain, redness and swelling).

If you don't live near London, there are other clinics, though not many, but the LNS can give you the info you need.

With very best wishes