Lymphedema clinics/MLD massaging in Bedfordshire

[BedfordBoy]

Hi all, does anybody know of a good functional lymphedema clinic or a lymphatic drainage masseuse in Bedfordshire? Recently I had to attend a different hospital for the condition. Apparently the waiting time to see a consultant was shorter at this hospital than my local one. So I asked the consultant if he can refer me to a clinic so I can receive lymphatic drainage on a regular basis. My GP was clueless about it in general. To my surprise he said there is no longer a clinic available! I assumed every local health authority had one or could refer me to the nearest one. I feel somewhat let down. Does anybody know of a place? I rang a couple of private clinics but the costs made it too prohibitive. Many thanks in advance! 😁

[CCT67]

Contact the Lymphoedema Support Network/LSN (national Lymphie charity based in London) for clinic information in Bedfordshire. Lymphoedema.org.uk

You can find fully qualified Lymphoedema Therapists on MLDUK.org.uk and lymph.org.uk

Lymphoedema Therapists are specialists, highly trained in lymphatic drainage which is not ordinary massage. Don’t seek lymph drainage from anyone not properly qualified/not listed on above pages or you risk complications. Many Lymph therapists are also qualified in therapeutic compression and can provide details to enable your GP to prescribe suitable compression. Look for DLT next to therapist name as this denotes advanced training including compression prescribing

[BedfordBoy in reply to CCT67]

Hi CCT67, Thanks for the advice, I will follow this up. All the best.

[SAT46]

I live in Bedford the service here is abysmal. As far as I know there is(was?) one lymphoedema nurse based at Luton hospital. Even my GP couldn’t help when at one time the Bedford Daycare Hospice had MLD nurses there but they only accepted referrals - where treatment wouldn’t be NHS funded

[BedfordBoy in reply to SAT46]

Hi SAT46, yes it is abysmal service around here. I'll find out if Luton and Dunstable Hospital still have their nurse. All the best.

[Poddles]

Good morning- if you also look on the Physiopod website and click therapist you can select MLD Therapist and pop in a postcode to find one near to you. For reasons of transparency I am Mary from Physiopod. We were recently at the LSN meeting in London. Lovely to meet some of you. 😊. Oh alternatively, click the contact button and I can find one for you.

[BedfordBoy in reply to Poddles]

Hi Poddles, thank you for the advice, I'll look into this. All the best.

[Linlang in reply to Poddles]

Advice please I live in Croxley Green near Watford and have been in acute pain

[AnneBury]

My understanding is that on-going MLD is not available on the NHS ( England, anyway). You might get it for a short period if you have a specific issue but, my understanding, is that it is usual to give you one session which includes showing you how to do SLD (Simple Lymphatic Drainage) on yourself. I pay privately for MLD on my legs. When I was diagnosed with faulty Lymphatics in my hands I was given one NHS session of MLD and shown how to do SLD.

[BedfordBoy in reply to AnneBury]

Hi AnneBury, I didn't know that. If it wasn't for this site with all the helpful advice I don't know what I'd do! You can't rely on the doctors to tell you about it that's for sure! All the best.

[AnneBury in reply to BedfordBoy]

Good luck. It's worth seeing what you might be able to get on the NHS

[Linlang]

I’m newly diagnosed - ankles and feet. Live in Herts on border of bucks.

Saw a consultant orthopaedic surgeon who gave no advice except you need massage and drainage. Did not tell me it was a permanent condition. Advised seeing a herbalist who said I should come off omniprosole and sent various herbs for teas and tincture. I have a hiatus hernia which has caused bleeding and led to significant iron- loss needing 2 iron infusions and was recently told by a senior gastro physician that I should remain on omeprazole for the rest of my life. I am returning these herbs to the herbalist and complaining to the Chiltern Hospital about the surgeon and his advice……..

My g.p gave no help was only interested in knowing whom I had found for massage and drainage - 25 miles away. Again no advice on care or treatment. I understand that the Enfield area has a clinic for all lymphadema patients. Watford seems to have none!

Feel very alone and left to find advice on the net- a DIY affair! I am issuing a complaint re the surgeon.

[LymphSuppNetwork Partner LSN in reply to Linlang]

Hi Linlang, so sorry you are having such a difficult time, It certainly sounds like you have every right to contact PALS in regard to the advice given to you. We have redacted the actual name of the surgeon as it goes against our guidelines to name individuals but please do follow up on getting some answers to your bad treatment. There is a lot of practical advice on the LSN website lymphoedema.org or give us a call and we can send you some information out. We also have a video about how to do some self drainage massage on our YouTube channel. If your GP is unable to find you somewhere to refer you to to get compression prescribed and some advice then ask them to contact one of the garment manufacturers who will sometimes work with GPs and practice nurses to to some training so they can help you. Thanks again for joining the forum.

[Linlang in reply to LymphSuppNetwork]

Many thanks. Will bare in mind your advice