FG-MLD: Would love to hear of anything. I have MLD... - LSN

LSN

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FG-MLD

veriterc profile image
8 Replies

Would love to hear of anything. I have MLD monthly - but have to pay for it myself, and go half-way across London (expensive taxi as can't climb onto public transport) so anything longer-lasting would be welcome!

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veriterc profile image
veriterc
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8 Replies
Rebec profile image
Rebec

Hi, May I suggest you get in touch with the nearest Arthur Rank Hospice and see if you can get MLD for a while there? I had a few sessions on the NHS in the hospice near me. Also, have you tried one of those machines which can be used at home and which can make life easier too? Good luck in finding the right help.

Hello, me again. Are you askng for help with transport costs or transferring from privately funded care to the N H S ?

You are entitled to NHS M L D care although it's often tricky to get it but I have helped several people get at least one course on the NHS. Nonetheless I nderstand your frustration with the system as you wrote before,

Transport can often be provided by the voluntary sector which is preferable to hospital transport but make enquiries at your next appt ?

veriterc profile image
veriterc in reply to

Thanks - what I want is getting funding for MLD treatment, since I can't pull on compression garments (limited movement ec-polio). If you know of any way I can obtain funding, would be so pleased!

Verite 020 7584 4555 verite@greenbee.net

ofcourse profile image
ofcourse

We pay privately for MLD but far less frequently as we have a lymohatic pump

machine. This means my mother who is nearly 100 can use it daily. At this age its

hard for the 'big legs' to go down overnight as they used to, and not so easy to

travel. Both she and I have primary LD in the leg.

There are several machines available - we looked at all if them before buying

Lymphapants which overcome all the old problems the machines used to have,

And are nice people to deal with. They may still do free trials. The people who make them are specialists in only the pump machines and have them for other

parts of the body too. You'll find them on line under lymphapants.

I think you'll find they're what you need.

ofcourse profile image
ofcourse

Sorry - spell check ! It's Lymphatic pump machine!

MLD is a maintenance treatment. Surgical treatment of lymphoedema (LVA and VLNT) can reduce your need in MLD and in some cases get you out of compression garments. Microsurgical treatment of lymphoedema restore lymphatic outflow, that is why it is called physiological. lymphoedemasurgical.com

julesab profile image
julesab

I have only had MLD once two week treatment on NHS but also had to travel miles away I wear compression sleeves on one arm !! I only go to clinic twice a year so not sure if they will offer it me again !! And not convinced of its benefit and I had to take 2 weeks of sick and I already on formal stages of sickness and may be threatened with dismissal as I gone over the level of sickness expected and I work in the health service. But that a different story. U may be able to get travel expense assistance but the would not pay for a cab for me, when I was in London I got an hc2 certificate but had to take train and bus tickets to their general office to get it back and once had to return to London for treatment whilst on holiday and they would not refund any travel !!

watersg profile image
watersg

I had a 20min trial on lymphapress when i attended lipoedema conference recently i was really impressed legs felt amazing after gives a complete massage solution for linb torso &thorax lymphodema & lipodema

uk avail

contact details compression therapy uk ltd The old School rooms Newlands Lane Stoke Row Henly on Thames RG9 5ps

Naomi@compressiontherapyuk.com

Naomi-Northern Ellis 01491682700 or 07966431223

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