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MS NURSE NIGHTMARE!!!!

Hi all,

I am so very very upset. I am a pt at the Walton Centre. I have been having some real problems for 12 weeks. I phoned the nurses on numerous occasions and never got a response. I went to the GP and they told me to go to the Walton Centre! So i have been suffering without any help. After 5 phone calls the nurses finally answered and told me that constant nausea is not as MS problem and neither are restless legs, not sleeping and the extreme fatigue i am experiancing because of all of the above. I went back to the GP and they said its an MS problem and to speak to the MS nurses! I then started witht he MS hug and phoned the nurses again. I didnt get any answer and this was 12 weeks from when i first started with such problems. So i sent the nurse an email. I was not rude, i explained frankly that i was suffering and noone was helping me and that i needed to be seen. I bullet pointed my problems, how i was feeling and how much i needed some help.

She emailed me back - well actually, she didnt write anything. She forwarded me a CC email that she sent to my consultant saying “i got this email from Lyndsey and i do not like her tone. I have done nothing but be supportive and helpful with lyndsey. What shall we do about her”.

I was so angry and upset. It affected my MS, i cried all day and have been in bed all day today. Im so deflated. No one is helping me and i dont know what to do. I am sick of fighting people. I am currently fighting my uni with a disability discrimination case, i fighting the benefits system who want me to go back to work, i am fighting the GP’s to get help and now the nurses and doctors who profess to be there for us DAY AND NIGHT when they have their lovely open days. They havent even got back to me to discuss my symptoms.

Lets just say my email was rude and she didnt like my tone - should that stop a nurse from seeing me and a consultant from making an appt for me :(. I am lost x x x x

Oh Lindsay, this is awful and just so unfair!

My GP often tells me to speak to my MS nurse…then sometimes it`s visa versa!

I recently expressed my discontentment at not having a diagnosis after 14 yrs. My neuro offered to refer me to a top MS doc. He refused to see me and advised my local neuro to do an LP. The LP was painful and I was poorly nursed. I can`t help thinking it was all due to airing my views.

We can`t say what we feel for fear of being black marked or badly treated or even ignored…as your repeated calls for help were.

What can we do? I don`t know anymore!

luv Pollx

linzi

i sympathise. my (ex) ms nurse called my gp and said she was not prepared to see me again cos i asked too many questions! gp was livid and referred me to another hosp where ms nurse is brill-email and phone contact if not the same day very soon.

can u see another ms nurse?

ellie x

Well Ill add to the other msers who have had bad treatment and attitudes from the medical staff who are SUPPOSED TO CARE ABOUT US. I received copies of my notes from neuro…yes, neuro and Ill give you an example of what she thinks of me:

‘this patient often turns up to clinic HYPERVENTILATING!, (then something on the lines of ‘psychiatric problems’’) - well boo hoo. I was extremely fatigued, puffed out and have since found out my hypermobility creates a double whammy in that I get twice the muscle fatigue (ms & hyp.) thus I easily get worn out walking - hence the huffing and puffing. So Im now a head case.

Me thinks sometimes when we ask too many wearing questions they decide we are bad patients and make derisory remarks, I can only assume to make themselves feel justified with their consequential actions - like not ever being there, or being fobbed off = Im fully expecting to be seeing cleaner next time I turn up - no doubt Ill get better care from him/her than the very staff who are supposed to care.

You ARE NOT ALONE - many of us have had sh.t thrown our way. Your gp is the one who needs to help - go see him/her and state that your ms nurse is unsympathetic so you would prefer some other kind of help via their expertise.

take care, holding your hand in friendship,

bren

x

I can understand your situation and problems you are having with your MS nurse I am having similar problems with mine, I have still not seen her yet and even after an ansawer machine message left for her last year have still not heard from her I too am at the Walton center and find it a nightmare trying to get through.

Spoke to a lady in the appointent team today who agreed that it was an awful set up that the MS nurses have and they rarely get back to people

I am really worried as the appointment I have been given I cant make after waiting a year and cant get in touch with anybody to change it to a more suitable time.

It is also a pain getting an appt with my GP as you have to call up at 8am to make an appt that day but by the time I get past the engaged tone and actually get to speak to someone all of the appts have gone all ready

Hi Lyndsey

Sorry you’ve had such an awful experience. It did take me a while to build up a relationship with my MS nurses as I’d changed hospitals and I don’t think they recognised my name, so like you; they never got back to me at first. This changed after a while and they are now very good, despite being rushed off their feet they always get back to me when I leave a message.

Something I have noticed is if you have a symptom that people can also have without having MS, the Neurological department will not take responsibility for the symptom being MS based. For instance I have an over active saliva gland (not MS apparently), frozen shoulders (not MS) and had virtigo so bad I had to sit up for a week, (This was a migraine according to my Neurologist and not MS)! Even though my doctor was treating me for vigtigo. All of these things are probably down to MS, it’s very frustrating. I also met a chap with MS last week who was told that the twitches in his legs and his restless legs (that were keeping him awake) were not MS! He was baffled too.

I wonder if you are in touch with your local MS Society, we have a good relationship with out MS nurses in this part of the country the MS Society are quite involved and perhaps they could help, advise, or even put you in touch with a different nurse. A letter from the MS Society could be the answer.

Take care

Wendy x

(((((((((((((hugs)))))))))))))))), yes I have also been in a similar situation. I think you should contact PALS firstly at the hospital, explain the situation to them and ask for their help. You are not surprisingly distressed by all this and just want someone to listen to you, help you and not pass the buck. It’s not a lot to ask for and your MS nurse should be more understanding at the very least. Explain that to PALS and book an appt with your GP to explain it all to them too, as they are supposed to deliver primary healthcare to you, and they are not.

Between the GP and PALS you should soon be getting help. Good luck and remember we are always here to help.

I’m so pleased that someone has highlighted this as I did think I was the only one that had a bad experience with the ms nurse. Can I suggest that you contact the customer care team or PALS first as they do have to act on any complaint . I’m a clinical nurse soecialist for cancer and was diagnosed last April. I saw the ms nurse at my GP surgery and frankly was appalled by her attitude. She did not appear comfortable in dealing with another nurse and kept going on about fatigue. I explained that it was something I was very familer with as it’s the major complaint from my cancer patients so I certainly know how to deal with it. She then started talking about incontinence which hadnt entered my head and then informed that she would refer me if needed. That upset me the most and it went downhill after that. I needed better advice and came away upset and angry and if I had treated my patient like that then I would give up nursing. I needed practical advise and ended up finding out more on the website such as informing the DVLC. She ended the meeting by saying that she would not give me any written info because I was capable of finding it out for myself…I now see the ms nurse at the National neuro hospital in London and they listen Please don’t give up. There are good practitioners out there and as a patient we do have the right to choose where we go . Lesley

Hi Also think GP’s dont have a clue either…Mine fobbed me off when I said how tired I am, and doing small tasks wears me out…He tapped me on my hand and said " Its because you are not working", I was speachless so I changed GP and for the 1st time someone listened to me.

Jan

I have a cynical feeling that all this “it’s not MS” / “it must be MS” tennis is to do with budgets and it’s absolutely inexcusable.

Constant nausea CAN be a symptom of MS, but it should be investigated by a gastroenterologist first to confirm that it is not being caused by something physically wrong with the digestive system. Your GP should be referring you to a gastro. Full stop. No arguments and no excuses. Your GP can also prescribe anti-nausea meds to help you out in the meantime (e.g. domperidone - that I have on repeat prescription because of my MS-induced, IBS-related nausea).

As far as your MS nurse’s email goes, I would send a reply to the neuro if I were you (cc’ing her), detailing how little contact you have had despite your phone calls and stating that you are going to complain to PALS about the threat that her cc’d email implies and the stress and exacerbated symptoms this has caused you. Let’s face it, she already doesn’t like you - does it really matter if you rub her nose in it a bit more? Of course, this is easy for me to say - perhaps you’d rather not burn any bridges, in which case no email but a talk to PALS might be a better route? Her behaviour is disgusting though - she shouldn’t get away with it :frowning:

Karen x

[quote=“janetlouise”]

Hi Also think GP’s dont have a clue either…Mine fobbed me off when I said how tired I am, and doing small tasks wears me out…He tapped me on my hand and said " Its because you are not working", I was speachless so I changed GP and for the 1st time someone listened to me.

Jan

[/quote] This sounds just like my gp Jan! He said ‘Ithink you are a person who worries about having ms - you need to get out more!’

Perhaps i should change gp as well!

My ms nurse is the opposite though. She is the one who has helped me the most.

Teresa.x

First of all, big hugs Lindsay. Your comment about being tired of fighting really hit home for me as I have had a very similar experience recently. when you are unwell, you just want to spend your energy on getting better, not fighting for the care you deserve and need. The stress of fighting is really detrimental at times. I was finally seen by an excellent ms nurse who took me seriously. She didn’t make me feel like a nagging hypochondriac and that alone was such a relief. I now feel that I can focus on getting better which is a big step forward. Don’t be afraid to ask for a new nurse or change your gp. But it is the fighting for care in the first place that is the problem. I spent a lot of time thinking ‘I should be able to sort this on my own’ and I didn’t want to have to get others to fight my corner for me. Big mistake. In the end, I let my partner and parent have more of a role in voicing my concerns. I let them take on SOME of the fight so that I could focus on me. Don’t feel that you have to do all the fighting on your own. Having my partner calmly and rationally voice both of our concerns at appointments, taking a close friend to hospital visits and having them back me up helps. Have a friend or family member help you find a new gp etc. Get someone else to make some of the tiresome calls and deal with the insane red tape from time to time. Get the ms society or students union rep involved when appropriate. I know it easier said than done, but try to take some things off your plate so you can focus on rest, recuperation etc. Again, big hugs as I know what you are going through. Hope things get better soon x

Lyndsey- that’s awful treatment and I do sympathise. I think the reason the docs and MS nurses try to fob you off onto each other is simply because they haven’t got MS and haven’t the faintest idea what patients are talking about most of the time. I used to have an MS nurse, but she retired and I haven’t seen one since. In my opinion they are a complete waste of space, as are most of these Specialist Nurses. I also had an ostomy (poo-bag) nurse who was downright rude, made appointments to come to the house and never turned up. There again, she had no experience of my complaint. Regarding the email - that is just not acceptable, and please don’t let them start you on the psychiatrist road. I had twenty years of that before I got my diagnosis, and a horrible “only you can help yourself” psychiatrist, and several admissions to mental hospitals. No wonder he couldn’t cure me of my “mental health problems”. I hadn’t got any. I had MS all along. Best of luck if you do put in a complaint. x

Hi Lyndsey and everyone else,

I have to say I’m appaled at your disgusting treatments. I myself had, and am having very good relationships and treatment from all concerned. My MS nurse is a marvel who always replies to my phone calls, and either gets my meds changed or arranges for me to see a neuro. i will say that I did have a problem post diagnosis with the neuro but thjis has now be sorted. The nurse has been an absolute star, and when my son was killed in a motorbike accident in January, there was nothing that was too much trouble for her, even to visiting me at home when I was at my worst. She listens to me (even when i waffle on) she has arranged home physio and OT sorted out an appointment to have splints made for my hands, and making an appointment to the wheelchair service at the hospital, written letters to support my dla claim, and for my appeal over my esa. Reading the postsn here Inow appriciate her, and all the other services from the hospital and realise how lucky I am!!

PS my gp has very little to do with my MS as she has very little need to.

regards kevin AKA Monkey1666

Hi Lyndsey, I really feel for you and I sympathise with you. I am no fan of the ms nurses myself and I agree with BelindaR (comment above) that they are a complete waste of space. Although the nurses I see are pleasant and friendly I feel that they are an extra layer of bureaucracy before you can get any help. I personally bypass the nurses if I can by going straight to my gp because I feel that is where I will end up anyway but months later by the time I have consulted the nurse and been referred back to my gp. However, I try to keep in with the nurses, by trying not to rock the boat because I feel they have the potential to make things awkward for me if they so choose. So if I was you, I wouldn’t make a complaint, at least, not one which was going to get back to the nurses because I feel that that kind of thing would just make things worse for me. I don’t really know what you can do tbh, I think you’ll have to rely on your gp and forget about the nurses but your gp is telling you to speak to the nurses, could you see another gp or you are saying the nurses don’t answer your calls, could you keep a record of your calls to the nurses and then use that to show your gp that you get nowhere with the nurses, perhaps the gp could contact the nurses on your behalf. Btw, I agree with you that even if you had been rude(and I am not suggesting for a minute that you were) that the nurse should stil be seeing you and helping you. Cheryl:-)

Have to say that when I was first diagnosed and assigned an MS nurse, she couldn’t have been more helpful - got me an alarm system as I kept going blind and suggested local MS meetings. Once the initial help was over though, there wasn’t really a lot she could do as we have no resident neurologist at our hospital so I was never offered any treatment of any kind, other than IV steroids in hospital when I had a really bad attack, and I had an arrangement with my GP to ring 999 if I knew I couldn’t cope at home so she wasn’t involved in that either. I appealed to her for help after a major bowel op, when I was expected to walk to the toilet - pre-existing conditions don’t seem to be taken into account. It was put on my notes that I couldn’t walk, but as soon as the nurses’ shift changed, so did the MS info! We agreed that there was no point in her visiting me any more, as there was nothing she could do to help. A web- friend in Cheshire seems to have all sorts of therapy centres and MS resources locally, and she was horrified to hear I didn’t have an MS nurse or a neurologist, but what’s the point?

Some MS Nurses are great and do their job to the best of their ability. In turn they have a real positive impact on our treatment and quality of life. Other nurses simply don’t and it seems to be a bit of a (very unfair) lottery.

Not all specialist nurses are a waste of space!!! You don’t need MS to know what your patients are going through and I don’t need to have cancer to understand what my patients are going through. What you need is empathy and understanding. If I don’t know the answer to a patients question then I find out and I don’t fob them off. It’s not difficult to be kind . I expect the same treatment that I give Lesley

Just saying that someone who hasn’t got MS hasn’t the faintest idea what weird and wonderful (!) sensations MS-ers are feeling, or can know the difference between healthy tiredness and neurological fatigue, or wanting company but not being able to face it. Kindness is very important, but experience of medical conditions is invaluable. If I ever said how difficult it was for me to make plans, to my MS nurse, or that taxis couldn’t always take me where I wanted to go, I always got the same reply “You’re just making excuses”. She hadn’t a clue, whereas all the people on this site would understand.