WHEN Mary-Ann Wood beat cancer, she thought she had won her health battle – but it had only just begun.
Less than a year after the hysterectomy which saved her life, she discovered she had lymphoedema which has left her with one leg weighing more than two stone and could leave her immobile in less than ten years.
Mary-Ann has been denied an operation which could improve her quality of life.
Mary-Ann, 53, said: “17 years ago I had an operation for cancer which left me with lymphoedema. Unfortunately it no longer responds to treatment. My leg just doesn’t want to know. One of the UK’s leading the lymphoedema specialists said I was an ideal candidate for liposuction for lymphoedema, which is not a cosmetic treatment.
“You have to apply through your GP for individual funding from the Coastal West Sussex Commissioning Trust. I was refused but there is a lot of confusion over why. I contacted MP Andrew Tyrie in desperation. He got a reply after three letters to say it has been turned down because they are not sure I am exceptional case.
“The consultant said I was an exceptional case, in the worst case category of people with this condition.
The trust want proof this operation would be beneficial and have long term benefits. But they have only been doing the operation on legs for four years so there is no long term proof available. It’s not a cure, which I understand, but the doctors will get my leg back to its original size. I think it’s a postcode lottery. They don’t perform the operation privately so the funding has got to be there.
“I will become immobile if I don’t have this operation. By the time I’m 60 I won’t be able to walk. I don’t feel that is something I can deal with when I have two young grandchildren. I want to raise awareness - it seems totally wrong to me.”
Mary-Ann is currently fundraising to buy a £2,500 lymph assist machine, which will help her feel more comfortable.
“I feel I have done everything I possibly can to make my situation better but because I haven’t got the right postcode I can’t get the operation I need,” she added.
“Lymphoedema makes me more susceptible to infection - I had cellulitis three times last year. The doctors said it will get worse and worse. I am in discomfort all the time and can no longer walk very far.”
“I wasn’t issued with a compression garment until it was too late. It would also ease the constant pain and all the sores.
“I’m one of the chairmen on the Lymphoedema Support Group which I helped to set up in Chichester three years ago. We hope to make things better for people with lymphoedema. Very little is known about it.
Most of these people have been through cancer. They get through that hurdle then have to face another hurdle.
“The condition is very time consuming. Every day I have to massage my leg and put my compression garment on then sit for an hour every night and apply bandages, then wear bandages to bed every night.
Day to day life is difficult. I can’t get on my knees or walk very far. I used to work with special needs children but had to give up work seven or eight years ago because I couldn’t lift my leg onto the bus.
Because of all the fluid my leg weighs two stone more than it should.
Last week Mary-Ann did her first shift as a volunteer in Midhurst charity shop Help the Aged. “They’ve put a chair behind the counter for me to perch on. I just wanted to get back to doing something.”
‘Not enough evidence’ for treatment
A SPOKESMAN for the NHS Coastal West Sussex Clinical Commissioning Group, said the ‘evidence of clinical effectiveness’ of the operation Mary-Ann was asking for was ‘poor’.
The spokesman said: “We are very sorry to hear Mrs Wood’s concerns, and we do understand the difficult situation that patients are in when they come to us for individual funding.
“There are treatments and drugs that we do not routinely fund, but which we know, and understand, that patients and their families want to look into and explore as a possible solution to their medical needs.
“To enable this, people are able to apply for individual funding through their clinicians.
“Decisions are not taken lightly, and cases are thoroughly considered by a panel of hospital consultants, GPs and lay people.
“When applications are received, we request an independent evidence review from Guys’s and St Thomas’s NHS Foundation Trust, and this is considered alongside the submission from the patient’s clinician.
“The CCG’s panel fully considered Mrs Wood’s case, but found that the evidence of clinical effectiveness of the proposed treatment was poor.
“We understand this is disappointing for Mrs Wood, but without evidence that the treatment would be clinically effective, the panel could not approve the treatment.”