Should we try lobbying our MP, Tweet / send Facebook messages - All treatment for Lymphedema should be delivered free & available on NHS..🍀

[eleanorshutie]

I think it's a shame treatment is a lottery in UK, especially when you suffer pain and discomfort. This government should be ashamed that only people who can afford treatment receive relief and treatment. It should be on the NHS... it is a national disgrace. I still haven't been able to get a referral to lymphedema/ vascular consultant. I'm still under a Vascular consultant who will not refer me.. he wants to remove the veins in my leg. I would like a reason why I have it and what stage I have it. So I can provide evidence so I can hopefully receive financial help to see a Lymphodema therapist in my local town. It makes such a difference but not everyone can afford £65 for each treatment. You really need 2 sessions each week. So you suffer pain and swelling in silence because you don't know what else to do. You wear compression garments and exercise as much as you can and work fulltime. I'm ashamed that this government makes us suffer pain... because we can't afford treatment. I don't know if it will work but would it help if we start lobbying our local Mps? So wherever you live and whatever your income we are all entitled to see a Lymphodema Consultant and receive relevant treatment to relieve pain. Over the weekend I'm going to lobby Anne Milton my local MP - if we all lobbied our MP.. tweeted our concerns, follow on Facebook maybe just maybe we will all receive treatment quickly to prevent the disease moving to the next stage.. fingers crossed 🍀let's hope so..

Reply

[Angelil]

I have already contacted my local mp several times and have been ignored! However I then contacted the mayor of West Midlands and a member of his team have written to the health minister on my behalf (I will email them today to see how they got on). It can’t hurt for the issue to be raised every now and again to raise the awareness of lack of funding for lymphoedema treatment!

[Angelil in reply to Angelil]

Ps I asked about petitions on this forum a few months ago and had lots of people saying they would sign. Please let me know if you decide to start one and I will happily help spread the word!

[Lynora]

Why not contact the team at LSN and ask if you can join their crew - they have connections in high places and welcome people with energy and zeal who want to take on ground work.

[alfie19]

I was advised by LE clinic to write to local MP and Health Minister for funding you need a letter from clinic with cost of treatment hopeful they will give you a grant which goes straight to the clinic for your treatment. I had a rely within 2 months that my funding was successful every case is different that's why you need the first consultation with LE clinic for assessment before contacting MP the factors are how long have you had your condition and how it can be controlled etc.

[Sbluebam in reply to alfie19]

Hi Alfie ,

I am a 49 yr old lady have been asking fir help since I was 13 yrs old was always just told to lose weight that was the cause .

Now I am a size 10/12 but no change to my horrible legs .

How do you get them to agree funding ? No one wants to help at all it’s totally soul destroying !

Barb

[Lynora in reply to Sbluebam]

Hi Barb - do you have lymphoedema or lipoedema?

[alfie19 in reply to Sbluebam]

Hello Sbluebam you need to be referred to the LE clinic by your GP to be assessed they will help you draft a letter as they will tell you how much your treatment will cost then you write the letter to your MP at House of Commons and the Health Minister with all the information I was lucky to get funding for several treatments then it became available on NHS but they maybe tightening up again

Your initial consultation is the inportant one i had to pay years ago £25 with a top consultant for a written assessment before my GP would take me seriously as hardly anyone knew in the 70s what this disease was or why my feet and legs swell. Please contact and join LSN direct for further help they are marvelous and tell you where your nearest LE Clinic is.

[eleanorshutie]

Thanks Alfie I have appointment on Tuesday. I will discuss it then. Sorry for the late reply I missed your message by mistake. There is a Lymphodema therapist in Guildford that applies MLD with a machine- pain goes and swelling but only lasts for a few days then returns. But it helps but it's £65 for each session. I work in the NHS can't afford to go. Very frustrating and unfair. I will hopefully get some good news on Tuesday. Fingers crossed.

[Hidden]

be careful with removing veins etc. others have written about that on this site. I would be scared to death to have to cut into my leg. I rarely go to a dr as when I need medication I have it prescribed. I live in the US and easy for me to get to a dr. or go to ER when I have cellulitis................... pain and swelling is an indication to me I have an infection..don't hold your breadth about laws changing... maybe you can find a different vascular dr. mine originally didn't have a clue what was wrong.

I got most of my advice fro the therapist out patient from hospital