How to get Lymphoedema and other treatments when the NHS says no

Normal Lymph Node
Lymph node  Flickr

TEN STEPS ON HOW TO GET LYMPHOEDEMA TREATMENT

If you have Lymphoedema, even if services have been withdrawn in your area, it’s worthwhile making a fuss: read on for information on how you can possibly obtain treatment.

For those of you who would like to go to Europe for treatment that isn’t available here, the same ground rules also apply Steps to take are underlined.

Anita from LSN gave me Step-by-step instructions, which 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.

2. If the Consultant says treatment will be of benefit, ask if this is available locally.

3. if not…..Contact your local CCG.  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,  or look them up in phone book, or ask your Town Hall.

4. If the CCG says 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. If you have an MP who doesn’t help, then …

6.  Get on to your MEP (Member of European Parliament). These are surprisingly powerful.  You find them by Googling MY MEP.

This is where paths diverge – for Lymphoedema follow steps below.

For treatment ABROAD, if the NHS refuses this let your MEP fight this for you.

7. My MEP happens to be Syed Kamal, who is very interested in health. Incidentally, don’t worry if your MP/MEP is a member of the opposition – whichever party is in power. Often they are more eager to help constituents).  Find address on www.europarl.org

8.  Get the MEP to write a letter to the CCG saying it is your right to have this treatment.

Give the MEP the basic outline (keep it brief).  They will know how to turn the facts you give them into the right letter.

With me, the previous PCT wrote a letter 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.  What a cop-out!

9. So go back to your MEP, explain the situation, and mine sent off a letter saying – in effect – that the PCT HAD to fund this – privately.

10. In my case they caved in almost immediately, and agreed to fund treatment at a private hospital. MEPs have more power than we realise, and here in UK officials seem frightend of them.

Most private hospitals with physio depary tments 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.

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.

And good luck.  It was surprisingly easy once I had got in touch with my MEP.

verite@greenbee.net

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