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ms nurse

Hi all. Just wondering does everyone here have a ms nurse. I don’t have one just have my neuro and his secretaries. People tell me they don’t know how I get by without 1 but I’ve managed the last few years without 1. Think its because the health service in my area is spending all the money on wages or something. Is an ms nurse good to have and am I daft not to change to another neuro that has a ms nurse in another area of the country.

hi jimmy

the poor ms nurses have a massive case load and can’t do all the things they want to do for us.

it’s caused by politics.

i used to see my nurse every 3 months as she was monitoring me on tecfidera.

now i no longer drive and the clinic is the other side of town.

i got taxis a couple of times but it really wallopped my bank balance.

so i asked my gp if i could have my lymphocytes monitored there.

they agreed and they are only 14 houses away from me so i’m well chuffed.

so to answer your question, yes they are good if not marvellous but they are very badly stretched.

it could also be vital to your choice of DMD.

tecfidera carries a slight risk of PML so they monitor us closely.

if you are on a high risk med then make arrangements to get monitored by ms nurse or by gp.

hope you get sorted by one or the other.

carole x

My MS Nurse monitors my condition and medication every six months. She is a source of advice and guidance that wouldn’t otherwise get and helps me to manage my MS better.

A MS Nurse can refer you to other services such as a continence nurse, wheelchair services, carer advice and is constant touch with my GP. Perhaps I’m just very lucky.

Anthony

Yes Jactac, services seem very variable, even within the same health board. I know two other people in work now with ms - we’ll over 9000 people work for the organisation so there’s probably a few more lurking! Anyhow, neither of them have heard of the newly diagnosed day I’m attending in a couple of weeks. I just don’t get it, as I can understand different people need different monitoring regimes but something like a newly diagnosed day if it’s available in an area should be available to all newly diagnosed in an area, they have both been diagnosed a few years before me, but I know the course has been running for at least 6 years as someone in the local group told me.

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just seen mine after waiting TWO YEARS lol. I see him again in six months. Verdict well was a waste of time to be honest.

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I had a brilliant MS nurse who was very involved in the community, did everything she could for people (I’d even seen her on a Saturday shaking a donations box for the MS Society). Then she died on breast cancer a couple of years ago. She has been much missed by all her patients.

Fortunately, her replacement is my ex continence nurse. So I already knew her. While she’s new to MS, she’s very keen and after about 6 months in post is becoming very knowledgeable. She’s a different character to the previous nurse, does things differently, but actually is going to be at least as good as her predecessor.

I contact her by email when I have questions, problems (need letters for DWP), etc. I also see her whenever needed. At least every 6 months.

When I took Tysabri and Tecfidera, the hospital had a team of two (then a third was recruited) MS nurses who were responsible for infusion services and I believe now look after Lemtrada and possibly other DMDs. And they were brilliant too. I even had phone calls at 7pm on a Friday night, they were/are so dedicated to their jobs.

A good MS nurse is worth their weight in gin. I have no experience of a bad one.

Sue

My ‘out of County’ neurologist (and GP, MP, private neurologist and work place), have all written to my local ‘in County’ neurologist. My ‘out of County’ neurologist said that I need a local MS nurse to begin tecfidera. They have just (finally) accepted me onto their books and I have an appointment with an MS specialist at the end of March. (The Patient Advisory Liason service in one phone call said that we had a ‘right’ to local services, but in another phone call advised that I return to my GP because the local hospital ‘would not be funding my treatment’). Diagnosed last May 2017 and half a dozen relapses later, it is all rather unsatisfactory. Also, If you phone the MS nurse phone line in Shropshire, a voicemail explains that there are limited services and that you should phone your GP, the MS society helpline or visit an A an E. Sadly, politics and underfunding, I feel. Good luck.

Thanks people for the answer. I see my neuro every 6 months for the last 6 years but il be seeing him every 4 months this year as im getting regular mri to check for pml as im on tysabri and im high risk. I was asking ye cos people here have said how do I survive without a ms nurse. From the answers ye told me I think I’m doing ok. It’s only in my area that has no ms nurse, every other part has 1 some places have 2. Bloody health system spending money on everything else except the patients.

Carole im high risk on tysabri and im getting mri every 4 months and my neuro is good and have a good gp. Just never had a ms nurse and sometimes I wonder if I get symptoms of pml who should I call.id be waiting a bit for neuro to contact me if I do. It’s not politics here, it’s just billions wasted on wages and not patients. Thanks

You are so lucky sue to have a good neurology team. I’ve never had that only from the nurses when I was copaxone and gilenya. I have a good nurse at my gp office that does my bloods if I need them and have great nurses at infusion centre for tysabri but no ms nurse. People I know say they wouldn’t be without ms nurse and don’t know how I do it. I hear great things about them in some places. Not every place is the same which is maddening. Cheers

It’s just another example of the bloody postcode lottery. I do well for MS nurses. And in fact we have an excellent Community Neurological Team altogether. But do badly in other respects. Such as FES. In this area, it’s just not available for people with MS on the NHS. So, you win some, lose some. I think Jimmy, so long as you get regular MRIs, you should be OK. That’s the important thing after all. Stay safe and PML free. Sue

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Sue I thought the money is divided from the central office and should be divided equally.It is unfair and mind boggling. Suppose I’m lucky to have a good neuro and that I’m being looked after with regular mri’s. Just don’t understand we have no ms nurse and other places have 2 or 3. Thanks Sue

where i live near a big city there is only 1 MS nurse. I read somewhere there are only 250 registered MS specialist nurses in the entire country.