"My experiences of Lymphoedema "

About: Freeman Hospital Hexham General Hospital / Trauma and orthopaedics NHS Northumberland CCG

(as the patient),

My story is long and is a story I wish I did not have to tell.

I contracted cellulitis to my right leg in August 2010. I sought immediate treatment. The cellulitis was severe and there were red streaks and leading to the groins. The groins were inflamed. I was told this was “tracking”. I now know this was lymphangitis. I was given antibiotics and told I would ok by end of fact.

The facts were I was on antibiotics for 26 days and was left with lymphoedema to my right leg. It took approx. 10 months to get the diagnosis. The service I received from my GP and local hospital was a joke. If you wish to know further details let me know.

The lymphoedema was caused by scarring to the lymph nodes by the cellulitis which in my opinion could have been avoided if the “laid back” GP I was had taken things more seriously and recommended admission to hospital for INA. The irony was he was based at the hospital. However the law on medical negligence is so weighted heavily in favour of the GP I have no hope of justice.

I was literally given compression stockings and told to get on with it. The lymphoedema has ruined my life (something that is totally lost on them medical profession). It hurts every step I take, I can only walk limited distances. I now longer look forward to anything and have stopped holidays. My condition is slowly getting worse as my foot gets stiffer. This will led to orthopaedic issues in the future.

As a result of the fluid my low leg has stiffened placing strain on my foot and surrounding muscles and ligaments. It hurts to walk and stand. Compression stockings are ineffective. In addition the distances I can walk are limited.

Whatever anyone/organisation tries to tell you they have it covered is nonsense. There is no meaningful support in my area. If you want manual lymphatic massage it must be paid for privately.

I am become disillusioned at the lack of support provided by the NHS. It seems when you have lymphoedema you are excluded from the NHS process.

I visited Italy in August 2012 to see Professor Campisi clinic. He uses a method called "shunting the deep lymphovenous veins to the blood veins” for lower extremity lymphedema with encouraging results.

Professor Campisi recommended surgery. You have a 5 year window whereby the surgery has limited effect Cost is £30, 000-£45, 000 euros. I approach the PCT who were most unhelpful in the past. I was offered the paltry sum of £2, 300. (After £700 was paid for seeing the Professor)

They advised I met the “criteria” but the cost of an equivalent operation is £3,000. Seemingly they have a tariff system and my operation fits into the box of £3, 000.

I am continuing to fight this and am aware I have 24 months left to raise the funds.

I feel like treatment for lymphoedema on the NHS is non-existent. I feel like you are a nuisance for trying to get treatment. All my spare time is used fighting for justice and to get funding for an operation to try and give me back the life I had.

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Responses

Response from Annie Laverty, Director of Patient Experience, Northumbria Healthcare NHS Foundation Trust

picture of Annie Laverty

Dear Lance,

Thank you for getting in touch and I apologise for the late reply but I was trying to find some information for you.

I am sorry that your experience was so poor and that you feel that treatment for your lymphoedema has been non –existent and also that you have had no support.

I wondered whether you had been referred to St Oswald’s Hospice in Newcastle which is our regional centre of excellence and although it is a hospice, it treats patients with lymphoedema whatever the original cause.

I also found that there is a potential of the type of surgery Professor Campisi is offering being done in Oxford, Chelmsford and at the Royal Marsden in London and wondered if you had explored this already?

I hope that these suggestions may be of some help.

With best wishes,

Annie Laverty.

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