Forum

MS nurse visits

I am on Tecfidera and the rule is you must have your bloods taken every 3 months and at the same time I see my MS nurse to report on my condition and any new updates, this has been the situation for 4 years.

Today my MS nurse said I will only be seen every 6 months and will have my blood check as normal every 3 months.

When I moaned, I was told this is because of MS nurse workload and that is the new policy.

I only see my neuro every 12 months and now my MS nurse every 6 months.

It seems we are a nuisance and they can operate better without us pestering them.

Another door closes.

Basically, just bugger off you bloody pest

Bertie

You’re very lucky to have an MS nurse anyway! There are so few of them & they have a very heavy workload.

You’re being monitored every 3mths. with blood tests, MS nurse every 6mths. & Neuro once a year…that sounds pretty damn good to me! Very different to being told to “bugger off you bloody pest”…you’re actually being well looked after

Rosina

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One of the reasons I put my name down for Simvastatin study was because you get to see your consultant every couple of months for the whole length of the study, 3 years.

We also get a thorough medical each time.

Before I signed up for the Simvastatine study I would be extremely lucky if I saw my MS nurse or consultant once every 18 months, and then it take a call from myself to get an appointment rather than it e a follow up appointment.

Things do seem to of improved though over the last year or so.

The problem with British people is they do not complain but accept rubbish service and are happy with it, finding reasons to justify it. I told my MS nurse to ask for more help and additional staff, not to make me suffer. The Government is spending billions on the health service and it is not delivering. Nobody gives a toss about MS as Les Dawson said a person in need is a pest. I asked my MS nurse about new drugs and said a few were in the last stages of trial. I asked would I be able to go on them and said there is strict criteria to be eligible for them, ie no, you are not suitable, real reason there is no money in the MS budget for drugs, staff or scans. I asked could I buy them in the USA and I was told no because the USA do not have safety requirements like UK and I might die. I am quite happy to take the risk because this is no way to live Yes I am moaning about lousy service but some people think it is fine. Bertie go back in your box, you pest.

hiya bertie

‘I told my MS nurse to ask for more help and additional staff, not to make me suffer’

the above sentence had me in tears for which i make no apology. i gave over 12 years of my life as a staff nurse in the nhs. i remain friends with many who are currently struggling on many different levels.

there is no cure in any country. and there wont be in my lifetime.

the nhs is broken beyond repair and i dont have the answers. some things that i do know-many staff are seeking early retirement, many are off on long term sick, recruitment is extremely hard. we have an mri machine but its not being used but why? cos theres no staff to operate it so a 160 round trip is required. local hospice is not taking new patients for 3 months cos theres no consultant to oversee.

when you asked your nurse the question i would guess it broke her heart (purely supposing on my part, i am awareof that) because she knows theres no-one else to support her and shes trying her darnest to support you. all this whilst putting her own worries to the side in order to support you and earn a wage for herself (whilst dealing with her own kids/parents/friends etc)

i know work is work and be professional etc but we are all human-not robots (yet!)

when you said about not to make you suffer. i am, sorry but most people are suffering on a variety of levels. we can listen and support (and be supported) but ultimately its down to us.

dont go back in your box, you are not a pest. you are a unique human finding your way through life-just like us all. and thank you for giving me the chance to get some of my thoughts out.

ellie

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Thank you Ellie. I have cheered up a bit since yesterday Had my 3 monthly vitamin D injection this morning, also a haircut but got wet as it stated raining coming back on my scooter. Going to book my flu jab at Tesco, it is free if you have MS and you can book an appointment and it is very professional. You can have it done at the surgery but you have to queue with about 100 others for 30 minutes. Something to look forward to might have a coffee and breakfast, as well.

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hiya

i was having a particularly bad day yest too-so am glad it past for us both.

jk rowling has given over 15 million towards research in ms today-easily found in a search.

re flu jab-that involves 2 buses for me to get/return to surgery so last year i went to local chemist and happily paid £10-went on powerchair-soooooooooooo much easier for me.

take care

Jk Rowling, my god what an absolute gem !!! Only just read about her donation.