Conflicting Medical Advise…what would you do?

I have lymphoedema in both legs following surgery so I have not had the BP problem.

I would be inclined to listen to the lymphoedema doctors as they know more about the subject.

If you are in contact with a lymphedema nurse or doctor I would bring up your specific queries because I feel you are going to have an argument every time you need a vaccine, bloods taken or BP measured.

Generally I’d trust the NICE guidelines, they are based on evidence from clinical teams across the UK, and are more likely to be reliable than what individual consultants say. However, where you have your blood pressure taken isn’t a life and death decision, so you have nothing to lose by sticking to your local consultants’ advice either.

KateyKrunch I would go by what your specialist has said. My mom had Lymphoedema in her arm after she had her first mastectomy and was told not to have BP taken or needles in that arm. This was years ago seems the advice is still the same .

Wish you a speedy recovery.?

Go with your consultant's advice.
Having your BP via your leg is a solution.
Hope your feeling better soon.

You have this in writing (going with Lorelie Lee's advice!) so firstly I would check that there isn't a time limit on this advice (there often is with this kind of stuff).
If it isn't clear, then contact the specialist nurse or leave a message with the consultant's secretary saying that you need to check.
NICE guidelines tend to be general, there will always be specialist situations where an expert who knows your case will advise differently.
Yes, it probably does mean that appointments have to be arranged specially, and I would speak to the practice manager to arrange the BP. Bit of a faff, but BPs are so rarely taken on the leg that I understand the issue.
In theory the vaccination shouldn't be a problem, but the 'mass vaccination' of the last 2 years relies on folk remaining dressed! I would arrive with a copy of the letter in hand, and wearing something like shorts under a skirt that would enable you to bare your thigh whilst not frightening the horses. Show the vaccinator the letter - I bet they won't blink!
Good luck!

I'd follow the Consultant, particularly as the advice was given in writing.

There are cuffless, wrist-worn, BP devices in development/use but I've no idea how accurate they are, and presumably they're not in general use in the UK.

can you change GPs. they sound unsympathetic.
they should be trying to meet the specifics of your medical need, not squash you into a one size fits all paradigm.

I've not heard of having BP taken other than on an arm so that is interesting Kateykrunch

However, having vaccinations or taking blood from an arm where lymph nodes have been removed is a no-no so I have been told.
Having the vaccinations in thigh or bum is an easy alternative. I refused to have both flu and Covid vaccines in one arm at the same time and requested two separate appointments. This caused one receptionist at the surgery a bit of annoyance so she said I'd have to wait, possibly months, to have them done separately. It was, in fact, two weeks for the flu vaccine and two months for the Covid vaccine.

Be careful, too, of cuts (keep them clean and covered) and of insect bites which could cause cellulitis. I expect you know that anyway.

i had bowel cancer then last year i had vulvar cancer and all my groin lymph nodes removed, my thighs and lower legs are constantly swollen, i take what i call a piddle pill (diuretic), i would ask the hospital nurse and get them to send a letter clearly saying what you can and can't have to your gp. gp's are great but they don't know everything that a specialist nurse knows.

I don't understand- no conflict here, just make an appointment when trained nurse and cuff available: Where is the problem?

I presume you can take BP anywhere there is a pulse and a cuff to fit I d be very tempted to change GP he /she sounds very pig headed As you ve got it in writing that’s a good start can you ring your consultants secretary and ask for it to be sent to your Gp and put on your notes
Good luck

My daughter never, ever allowed anything to be done on her mastectomy side, and generally, medical staff knew that it carried a risk of lymphedema.

I've had nodes removed both sides....you are right about nice guidance....I take precautions where I can eg vaccines in legs....but I have bp taken on wrist of arm where lymph nodes were first taken ( eg left arm as nodes removed in 2018 ....not right arm where nodes were removed in 2020)..... I take care to cover up arms if put walking in country to avoid insect bites or scratches to arms .... my oncologist previously said, when I had chemo, this was sufficient as the risk was minimal.... you can only do what you can do....I have 6 monthly bone infusions in my arm and 6 monthly bloods...I've been fine to date ...hope you are too

I’m a registered nurse who before I retired ran a cancer support centre which offered, among other therapies, treatment for lymphoedema. We always advised patients to refuse blood-pressure, venepuncture or vaccinations in an arm where there has been axillary clearance. I found that many, many health professionals have very little knowledge of lymphoedema. I used to tell patients that they have to be the guardians of their own limbs in healthcare settings as they will face ignorance from many doctors and nurses.

I am now working in a Covid vaccine centre and just yesterday had a patient who had undergone bilateral axillary clearance so gave her vaccination in her thigh.

Thanks so much for your input, its so good to have a few different perspectives. At least I have an agreement now with the GP on how to ensure leg BP readings are used. Flu and Covid Jabs are a different matter but again some great info here, so thigh it is. I understand the need to protect my skin. I have told my oncology and lymphoedema specialists about the GP issue, but was just advised to be my own advocate to protect my limbs and that it was unfair of the GP to put me under such pressure to use an affected limb, so this is a corner I need to fight myself moving forward. (Just that if you are unwell and need GP input, then you might not really be up to the battle).
Thanks again everyone, Katey

Fleurpepper

I don't understand- no conflict here, just make an appointment when trained nurse and cuff available: Where is the problem?

Thanks for your kind input.

I would definitely go with your consultant. GPs know a lot but they don't know everything.

I do think some health care workers don't like patients to say "I was advised..."

Kateykrunch

Fleurpepper

I don't understand- no conflict here, just make an appointment when trained nurse and cuff available: Where is the problem?

Thanks for your kind input.

Sorry, did not mean to be insensitive. Of course you go with specialist advice, and make appointment at the GP in accordance with said advice, insisting that it is followed, with the specialist nurse.

I'm lucky that I've only got one 'out of action' arm. But I never use it, despite having dodgy veins from chemo on the other side. Better safe than sorry.

I also agree with Miss Adventure. They like to be the experts. I fawn with health care providers. I need them a lot more than they need me.

OP, could you take someone with you to ;
i find it's easier for me to speak up for someone else, harder when i'm the patient/client.
you could maybe scratch each other's back when necessary, easier to reach.
good luck.

Just to say thank you for the further comments to my query, its appreciated.