It's bad enough suffering with the effects of lymphoedema but to have to go to a hospice for treatment is adding trauma upon trauma.
In our case when the local NHS hospital had exhausted all options they referred my wife to a hospice to get MLD. (manual lymphatic drainage) .
Sitting in a waiting room with the friends and families of patients having end of life care is just adding trauma upon trauma.
Why can't MLD therapists be located in a health centre or better still, a hospital? From the patient's point of view it's not much different to having to go to a crematorium for treatment.
Who makes these decisions?
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heretohelp
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Unfortunately this is a historic thing - initially the only types of lymphoedema that were being funded by the NHS were those related to cancer treatment and the best qualified lymphedema practitioners were in the palliative care/cancer care arena so the funding followed them. Whilst this is no longer the case a lot of the most experienced practitioners are still working in hospices and most are sensitive to the fact that they see a wide range of people with different needs. The other problem is that MLD is only recognised and consequently funded by the NHS as part of the intensive decongestive treatment that include bandaging etc so most clinics are unable to provide ongoing MLD whereas a lot of hospices - due their charitable funding and extensive complementary therapy expertise are able to provide MLD on an ongoing basis for some people.
I asked my team why they didn't go to other health centrers outside the hospice to provide the service ...they behaved like this had never occurred to them . Obviously defensive cos when i went on their patient info course they said " you don't mind that this is in a hospice do you"? at the start of the course when everyone was too shy to say actually its wierd!
If they'd asked the same question at the end of the session, when people felt more relaxed and comfortable, I suspect the responses would have been very different.
Same thing happens when the waiter asks if everybody enjoyed the meal. As a nation we're not good at speaking out, preferring to leave it to somebody else.
I worried about this too, on behalf of my son who started attending a hospice clinic when he was only 9 years old. Except for the leaflets in the waiting area that focus on cancer and terminal illness, the set up is pretty neutral, nice atmosphere with bright furnishings and so on. The lymphoedema nurse is down a corridor away from the other treatment/inpatient rooms, so in our case it's been mostly fine. But it would be great if there could be a more general context for the clinic.
I am very angry about the whole treatment of lymphoedema, what little there is. I first got it 18 months after my first breast cancer primary in 2003. I was given an elastic sleeve. Revolting. After two years the condition was getting worse and to my horror I was sent to the local hospice. I had to wait by the day room for the dying. The good news was that I got professional MLD and bandaging and the size of my arm fell considerably. I never got MLD again and I can only get bandaging every 3 years. You can only have MLD if you are dying and as for service they keep telling me they are a charity and that they can, and do, do as they like. They are, of course, being paid by the National Health Service.
And you have one more thing to look forward to - Cellulitus. My condition has worsen over the years and I am now supposed to wear an all in one garment. I am an artist so need control of my hand. I also have arthritis in my hands. The garment causes me even more pain and it means I cannot wash my hand. It is disgusting.
I could go on and on but I do not want to depress you all further.
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