I wondered how often members have Mld and bandaging and for how long? I currently have every two mOnths for two week periods?

[KMDB]

[katsryan]

Omg you are SO SO lucky, im in Ealing West London

And as im only Primary im lucky to have all that once a yr, thus my leg neve having much progress, very disheartening!!!

Cant afford to go private ; (

[Chetanna00 in reply to katsryan]

Hi katsyran, this should be available on NHS. Please ask your GP.

[suzie_danger_girl in reply to Chetanna00]

Its not, its available in some areas on the nhs. If I lived 20 miles down the road I woukd get it. But I dont.

[morganite]

You are very fortunate. I have been taught some physio to do myself and if i need compression bandaging do that as well, only go to drs if i need antibiotics and more supplies on prescription. It is eveident that care for lymphodema is so different throughout the uk and what is offerred which is so unfair.But good luck im glad its doing the trick for you.

[KMDB]

Hi katsryan - you should be able to get bandaging through your gp and apply it yourself or someone else do it for you. Do you have farrow wraps or something equivalent. I think you need to push for treatment in the uk - I am lucky that their is a good service where I live and I pushed for referral.

[KMDB]

Lsn - can you comment - surely you can help people get the treatment they need

[norberte]

i don't think it's right to call kmdb 'lucky' - she or he is getting a fairly minimal level of service for nhs-funded mld, as far as i can see

there are huge swathes of the country with no provision at all, which is truly disgusting

where i am the 'ration' used to be 6 sessions 3 times a year of mld, now it's 4 sessions twice a year

i don't think there's a limit to bandaging ... yet! but they've stopped doing corsets all together - you have to buy your own ready mades or go to orthotics for made to measure

i posted a while back asking what we could do to get improved services & whether we should be campaigning / complaining, & the lsn wrote that they were in the middle of setting up plans for both (i think) when we see what ld services are like after the massive nhs reorganisation (beginnings of privatisation) in april

we can do this so much more effectively if we work together & my suggestion is that we try to be patient while the lsn gets its head round all the changes that are happening on our behalf

it'd be good to have an update from lsn hq about how you're getting on

[Hidden]

I get mine when, I need it. I was diagnosed nearly 2 years ago and originally had every day. Then I graduated to every other day and eventually once a week. Since Christmas I have been going every 2 weeks. Last week I had a flare up and for the time being I will go weekly until my Nurse Specialist and the work I do on daily basis at home brings it under control. I have breast and posterior chest wall Lymphoedema so do not have compression garments. In addition to the MLD at the clinic I do SLD daily. The mornings I do my self and the places I can not reach my husband has to do in the evening. We are also lucky that we have now been able to set up a support group.

[Chetanna00]

MLD every 2 months ( every month in the Summer) and i bandage myself up every night.

The first time i was diagnosed ( 5 years ago) I was bandaged up every month for 2 weeks at a time.

MLD therapists and doctors can help you up to a certain point but most of the work needs to be done ourselves

[KMDB]

I would like to do the work myself especially with a two year Old to look after but I have been told I wouldn't be able to bandage my leg myself. I can do horse bandages not sure if that's the same.

[suzie_danger_girl]

Sorry I've had lympheodema diagnosed for 20 years and ive never ever been offered bandaging, and been refused mld. 'Minimal level of service' you may consider it but I've yet to meet a doctor who gives two **** frankly. So the answer for me is I've had it zero times. They have measured my legs 3 times, ive had stockings for the last 4 years or so, thsts your lot. They dont car two stuffs about the le on the rest of my body my face, arms, torso.....

I dont think minimal level exists.

My friend who has secondary le following cancer is shocked by how poor the treatment is for primary le compared to secondary. There seems more of a process for that.

[novembergirl]

My son (15) has had primary below the waist since birth. He gets garments and occasional mld through the NHS (has got this for last few years, before that through a hospice funded by charity). We have tried to get intensive treatment funded twice but failed, and paid privately for it. Our GP has been generous with garments up until now, but did question the last lot ("are they really necessary?"). I'm a bit worried about how things will go now that we have GP commissioning. Agree that it makes sense for LSN to find out what the picture is after current NHS reorganisation, and then all work together to improve services for primary and secondary, everywhere.