No lymphoedema help from my gp

[Alisonbbb]

Hi, I am new to the forum,

I have had lipo Lymphoedema in both legs for around 15 years. I used to get treatments and stockings from Willen Hospice in Milton Keynes. I was referred back to my GP as Willen Hospice stopped treating patients with primary Lymphoedema. I have had many serious bouts of cellulitis, going to hospital and many rounds of antibiotics.

In the last 7 or so years the GP has not measured me for new stockings or given me any treatment at all.

Each time I need new stockings I have to go back to the GP repeatedly to get the prescription correct, they never include all information that needs to be on the prescription. The stocking prescription I have at the moment is completely out of date, being around 5 years old.

I asked my GP to measure me for new stockings and I was told to go to my chemists who would measure me. I was not satisfied by this so asked to be referred to a Lymphoedema clinic. I received a letter to say they had referred me to the hospital. I went for the appointment today only to be told that they do not offer treatment or measuring, this has to be done with my GP.

I am so frustrated. My stockings are hanging off as they are so loose, even when they are new as the measurements are wrong now.

Is there anyone else from the Milton Keynes area that could tell me if their GP surgery is good or point me in the right direction to get measured correctly? I need to change for somewhere that can treat me properly. I am at my wits end with this.

Sorry the post is so long, I am just trying to cover everything to give a full picture.

[HazieC]

I think it’s a terrible state when our gp’s don’t help us. I went to mine the other day with a problem that I’m not sure is lymphodaema related or not, I didn’t get any help or support just a google search print out and told to self refer to a different department.

I hope you get things sorted soon .

[MARILYNFJ]

Some US websites for lymphedema garments can get your self taken measurements over the phone and may prescribe the proper garments for you. Google lymphedema products in US.

[CCT67]

You sure have been given the run around and let down by the NHS. You have every right to be frustrated and cross.

I’m not in Milton Keynes so unable to signpost you to a different GP. Generally they do not measure for garments. The chemist can usually measure for off the shelf garments but this really seems the job of the LE clinic. Could you call them to inquire why they referred you to hospital instead of seeing you at clinic and request they measure you?

Also, mamy private MLD therapists are trained to fit garments- you can find a therapist by doing a geographical search on MLDUK.org.uk. Although you’d need to pay the therapist she would be able to write to your GP with the garment codes, in turn your gp can issue a prescription.

It’s important you have proper compression especially after 5 years. You shouldn’t have to be battling for new garments but the nhs is forcing you to. All the best

[roysome]

My stockings from my GP were hit and miss. It's not a priority at surgeries and some of the nurses are clueless.

I went private. Was advised to get a wrap which I paid for myself (not cheap) but it has done wonders for my condition (left leg secondary.)

[Juliawoods]

I feel so sorry for you. I realise how lucky I am to have my gps support. He has referred me to a company locally who service my needs with regards to the correct stockings. No mld but that may come later. I have been involved with the local pct to get a service for us lymphodema sufferers. I too was turned away from a couple of opportunities due to having lower limb le and being a primary sufferer. Maybe I was too vocal for the gp which worked in my favour eventually. I have a fantastic relationship with my clinic now, healogics in Eastbourne and Hastings. Speak out correctly often enough and it will come. Show that you will do as much self help as possible ie diet, exercise, wearing what stockings you have at all times and the will reward you. All my care is on the nhs I know I’m so lucky but I do have to meet them halfway and do my bit. Persevere please don’t give up.

[patsy1702 in reply to Juliawoods]

I think you are very lucky with your clinic. I know that the harder I work to help myself eg. diet, exercise, SLD and wearing my support garments 365 plus the moisturising skin care etc. the less help I get from my LE clinic. I have to ring and ask for a yearly check-up. I have secondary bi-lateral LE from my toes to my waist (including the abdominal area) which I manage really well but like everyone else it takes time. I paid a private therapist to measure when I put on a few lbs after having a hip replacement, obviously I couldn't exercise. My GP is very obliging but doesn't know much about LE and doesn't have time. Nurses at the practice have very limited knowledge. Happy Days everyone

[Whitesugar]

Please ask the Lymphoedema Support Network to give you a list of services who will see you. You may have to travel. There are hospital Lymphoedema services (not private or hospices) who will be able to see patients from anywhere if you don't have one in your area.

[CCT67]

Another thought - you can get ready made garments in the UK without prescription through Credenhill aka Daylong Compression and Mediven (google). The websites and customer service reps will take you through options and measuring to help you select the best option

[skinpro]

Same here in the U.S. My GP will be replaced! At my annual appt, I asked for a referral to a vascular specialist. She asked why. When I told her I wanted to confer with them as its been over 25 yrs since my diagnosis of LE and felt it was time for a reconnect. She told me to take off my compressions (which I didn't have my gloves with me to redress). After she insisted, I complied. She squeezes my feet and says 'you have Lymphadema.'

I stared at her for a moment and said sarcastically "ya think!?"

She then said "there's nothing new for treatment for this. Just the stockings. There's nothing else a specialist will tell you."

I then demanded the referral and said "I want to hear that from the specialist not from a GP."

She gave me the referral, reluctantly. You've got to be your own best advocate as healthcare is going downhill everywhere. The best care I received was in Paris. They cut to the chase and had the diagnostics ordered promptly to get to the root of the issue. Excellent care there. The rest of the globe could learn a thing or two from France's healthcare!

Moral: Make your voice heard and keep searching until you find someone to help you. Good doc's still exist. You just have to keep looking!

Good luck xo

[Ocksocsally]

Hi Alison

I dont know the definite answer as everywhere seems to be different. However if you ring the Lymphodema Support Network who are a charity and run by volunteers they should be able to point you in the right direction. Their number is 0207 351 4480. I cannot understand why you are not being treated as I have Primary Lymphodema and am measured by the Lymphodema clinic every 6 months at St George’s hospital. It imperative to have compression hosiery whether Primary or secondary. Good luck LSN are very helpful.

[Androgony]

I have been told that the Lymphedema clinic will only see those whose primary condition is cancer. I have not been able to get a referral to any clinic in MK All hospital departments have refused to see me and in desperation the GP suggested that it would be quicker to get a diagnosis privately. Even with a diagnosis there is not a single place in MK that offers any support/help/diagnosis now or even if there are problems. You seem to be sent away and told that this is a cosmetic issue(!) I cannot even find a support group locally. At one point I was being told that this condition is so rare that no one has it in MK. Not sure I believe that