68.6K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

mld rationing

5 REPLIES 5
Guest user
Not applicable

Re: mld rationing

post deleted
keepthefaith
Member

Re: mld rationing

Hey Norberte!

The reason I have gone privately is I had some cording, which the lady who I see showed me how to deal with, and did some MLD as well, despite the fact no swelling. Since then, on Friday I noticed my affected arm a bit larger than the other, so definitely some mild lymphoedema. Fortunately she had given me a sheet with self-massage on it so I managed to get started over the weekend. Since phoning the BCNs yesterday lunchtime to get referral and appt to see lymph nurse, and I am STILL waiting for them to call back, in the meantime I have made an appt with the private lady and am seeing her in half an hour for some MLD! By the time I actually get to see someone on NHS, I can only imagine it could be a hell of a lot worse by then! It is so frustrating. Still, I hope private will pay for a few more sessions for now, until I get encompassed by NHS, then I will know what, if anything, is offered locally.

keepthefaith
Member

Re: mld rationing

You are all right! I pay £50 for MLD in my area privately. Seems to be the going rate. Fortunately private health insurance paying for now!

Teresa

elinda45
Member

Re: mld rationing

Hi Norberte, there's no MLD in our district except for the most severe cases. I wanted to have some to start me off and get the lymphodema down but had to pay privately. However, it was very expensive (£45) for first appointment and I didn't take to the woman doing it who insisted i booked in for 6 treatments when I told her upfront I couldn't afford to do that. I only had one session.

My lymphodema nurse works on her own and covers a huge area - it's mad. Luckily she is lovely and gives you her full attention when you do see her.

I'm afraid that lymphodema services are very much a neglected service and I'm hoping that BCC will add this to their campaigning at some point. I have been told they will.

Elinda x

Guest user
Not applicable

Re: mld rationing

Norberte

I come under one of the London PCT's and there is no provision at all for MLD. Because it helps, I have a session every 5/6 weeks privately. We have 2 LD nurses for the whole of the area, both really kind,helpful ladies but they can only stretch themselves so far. At my last appointment discharge was suggested but I stood my ground and they have agreed to keep me on their list in case of ongoing problems. LD is absolutely the forgotten part of the BC experience.

Andie

Guest user
Not applicable

mld rationing

post deleted