HAVE A RAW DEAL
Particularly if they
This nasty condition often comes as an after-effect of cancer surgery.
The swelling can be treated – sometimes successfully – but as cancer patients don’t complain (much) the NHS in its wisdom has closed down many clinics.
Recently a nurse told me treatment is excellent in the Coventry PCT area; next door, in the Nuneaton PCT area, patients are told it is not possible to treat Lymphoedema.
If you can’t find a clinic, take advice from
Lymphoedema Support Network www.lymphoedema.org
020 7351 0990
All of their incredibly efficient office staff are helpful, even though they run on the proverbial shoe-string. I spoke to Anita.
Step-by-step she gave me instructions, which I added to when I had contact, and eventually got me superb private treatment, paid for by the NHS!
These steps were:
1. Ask your GP for help and referral to a Consultant – these are usually to be found in specialist cancer hospitals, so it might mean doing some travelling. Believe me, it is worth it, particularly as OCCASIONALLY your swelling might not be down to cancer, but it could be caused by drugs you are on, or other causes.
2. If the Consultant says treatment will be of benefit, ask if this is available locally.
3. if not…..Contact your local PCT. Your GP should do this, but if for any reason they won’t, you are entitled to do this. Find out their address by Googling your area name and PCT, or look them up in phone book, or ask your Town Hall.
4. If the PCT says this treatment is not available (more than likely) get on to your MP, and ask for their support.
5. Give your MP two weeks to reply and suggest writing on your behalf. Mine wrote, the PCT wrote back saying they would fund treatment “in an NHS hospital”. This is catch 22 as they have probably closed down the NHS clinics anyway. Your local cancer hospital might have a clinic, but mine wrote to say theirs was for In-patients only. As Lymphoedema usually doesn’t turn up until you have long left hospital, they know they are relatively safe and you won’t qualify.
Or you are referred for bandaging and special garments. These may, or may not work on you. They didn’t on me – having had polio it was a daily struggle to put these on; the tight elastic they are made of aggravated my sore skin, so eventually it was impossible to wear them.
It was decided that MLD was only method that would work on me, and NHS doesn’t want to offer this as initially it is more expensive. The fact that in the long run it is cheaper doesn’t worry them.
So it was time for next step.
6. Get on to your MEP (Member of European Parliament). These are surprisingly powerful. You find them by Googling MY MEP.
Mine was very supportive, wrote to the appropriate PCT to say I was entitled to treatment, and within two weeks I was starting a course of MLD (manual lymphatic drainage).
9. In my case the PCT caved in almost immediately, and agreed to fund treatment at a private hospital. Most private hospitals with physio departments will offer this, but make sure the physio has been trained in the Vodder method – the best (as far as I know). Currently I had two courses funded – almost all the pain has gone and now I only get limited swelling – and am gearing up to fight for a last course to clear it up completely.
However, there is another type of treatment which is being offered at London Bridge Hospital (a private hospital). Talking to their nurses, it seems that this could be even more effective, so would suggest you contact them for more information.
If you feel like it, the Klinic Bad Sulza (see under Spas – Germany) offers excellent treatment, but as you need to take an 18-22 day course, you must be able to pay for that long a stay in this private clinic (around £120 per day all-in).
And good luck. Read through the notes above. You will probably have to write two letters – and that was all I did. It was surprisingly easy once I had got in touch with my MEP.