I have had M.S in excess of 15 years. I needed a pacemaker 18 months ago, because Intravenous Steroids caused my heart to stop and have a pulse in low twenties.
I have been in a relapse for 5 months- asked to see a neuro, couldn’t cope anymore. Cardiologist said no reason I cant have steroids and that is one of the reasons I had a pacemaker so I could continue on steroids if needed.
The top consultant neurologist - (whom I have never seen before) advised he hasn’t given any steroids in over 10 years. He was a man in his fifties and said quote unquote - you probably think I am a WANKER… (couldn’t believe what he was saying) I said I wouldn’t use that language Im educated.
He then went on to say, there is no evidence between oral and iv- I begged to differ advising oral, never worked and iv did- he then said well I will offer you a PLACEBO IV.
I advised he was insulting and wasting my time. He said he doesn’t believe I am in a relapse and in fact my m.s is just worse. He then said I will write to your cardiologist and ask if we can have an mri- which will show if you have had a relapse.
However if I am allowed an mri because of pacemaker - this will only show the start of a relapse in the last 3 months- so im thinking this wont show anything- what is the point.
In addition I said what about another form of scan such as a cat scan - he said YOU DO TALK SOME TOSH- DONT GIVE UP YOUR DAY JOB!! I said I am trying to think outside the box and do everything to help myself.
He then went onto say in these words " I am not a doctor who BULL SHITS" and I said I am a patient who doesn’t do that either.
He said I will see you next week and discuss further- I said Im not sure if you are aware, people with Multiple Sclerosis are affected with stress and it impedes greatly on there health!
Where to go from here- there is no one above him- the complaints team are about as useful as a chocolate tea pot - could go to a different county- a two hour drive away - why should I when I clearly am not the one whom needs to be taught manners.
Hi Charlotte
Contact P.A.L.S at your hospital. I had cause to complain about a neurologist, they were lovely and sorted out my problem.
Good luck xx
1 Like
Thanks but PALS in Swindon are no useful than a chocolate tea pot.
hi charlotte
the bottom line- there is no reason for anyone to be insulted by another person. when a doctor was rude to me last year, i pointed out the numerous signs in the hospital indicating that staff should be treated with respect, but my point was that this is a two way street and respect is earned. as a public sector worker myself i am disgusted to hear that you had to endure this man’s appalling manner. it doesn’t matter if he is the best neuro in the country or works in the canteen, everyone in a hospital has a duty of care, and a duty to treat patients with dignity. if he believes his status exonerates him from this, he is an arrogant bully and you should not let this drop. all you want is to be enfranchised in your own treatment and to work with the medical professionals, which is understandable.
I would make a complaint to PALS (and quote from the hospital’s mission statement), and at the same time ask for the contact details of the CEO of the trust as you will be writing to them as well if there is not a satisfactory conclusion to this (especially if you have cause to think that the PALS have previously been ineffective).
i hope this has been some use, and in the meantime take care, fluffyollie
2 Likes
hi charlotte,i would have replied with something like “well if the cap fits…or theres no smoke without fire”
I have noticed that since i been dx with ms people think they can treat you like an idiot,i find myself thinking the same as you:did they really say that: i let a lot go due to the shock of the situation but now i am going in prepared with some good comebacks lol
1 Like
I have had similar experiences to you with PALS. I had a much better time by contacting the Chief Executive of the hospital - it is worth giving this a try. It may make the neurologist think about his manner and correct it.
There are questions about when steroids are useful and whether their benefits (speeding up the end of a relapse) outweigh their profound disbenefits. Maybe you need to think about what the neurologist was trying to tell you as well as the terrible way he communicated.
2 Likes
First offering a Placebo and telling you this bluntly is totally unacceptable. Doctors may have more medical knowledge but you are the one who knows your body. A lot of them tend to forget that at times a compromise needs to be reached and they do not always know better. Also the comment about the day job is totally out-of-order.
The next time you see him, maybe ask for a witness to be present as well as making your complaint. It sounds like this neurologist has been allowed to get away with too much for too long.
I hope you get it resolved hun, tell him that he is the one who is causing your stress.
Hugs
JBK xx
1 Like
Hi
When I had trouble with a neurologist, I complained to my MP.
He took it up with the Minister for Health.
Hope this helps. You don’t need this aggravation when you are dealing with the MS as well.
Anne
1 Like
Ref JBK’s advice above:
There is no “maybe” about needing a witness - you need one.
What you do not do is call them a witness.
Use words like “You don’t mind if my partner/mother/sister/companion/etc comes in with me, do you?”
There are only two answers to this: yes or no. If it’s “No”, then you ask “Why?”
The answer to “Why” can (and should) be included in any complaint.
You should go to PALS, and also to the Chief Executive - who is Nerissa Vaughan.
Geoff
2 Likes
Thank you all - my husband was with me- thank goodness - I asked all the relevant questions- I may not have got the answers, but I communicated exceptionally well - the one thing I forgot to put in my original post is - the consultant asked - do I trust him… my reply Ive had more miss diagnoses than you have had hot dinners, so find it hard to trust any medical profession- and after the way in which he spoke to us, if there was a glimmer of trust, unlikely - in addition you have to earn someone’s trust and how ignorant of a consultant to say that on their very first visit with them.
That is so wrong and makes me realise how amazing mine is - you should never have been treated like that! Complain and take it as far as you need to
Sonia x
1 Like
Hi Annie
What was the outcome and did you feel satisfied with it?
Hi Charlotte
It was a slightly different scenario to you, My neuro sent me my dx by letter, which contravenes NICE guidelines amongst other things. I wanted to try and stop anyone else getting their diagnosis this way so I was hoping to achieve that. Having seen some more recent posts on here, I don’t think I did.
The way your neuro spoke to you was appalling and should not be allowed to happen again. If you have the time and the energy I would complain to whoever you can: PALS, hospital chief exec, MP…
I’m not saying complaining to your MP is better or worse than any of the other routes but it is another possibility.
Take care
Anne
I too am disgusted. Is he an MS neurologist?
I am totally appalled by this excuse of a doctor!
No professional should be permitted to act in this disgusting manner.
Can you imagine how quickly a door would be shut in your face, if you ever spoke like that?
You MUST take this matter further and seek an appointment with a different neuro…grrrr indeed, how VERY dare he!
pollyxx
1 Like
Astonishing. One of the hallmarks of a good doctor, it seems to me, is the ability to quickly and easily trim her/his sails to match the style of the patient. All the best ones do it. It’s all about establishing the therapeutic partnership, mutual esteem and trust, all that good stuff. Your bloke gets a great big fat fail, doesn’t he?!
Alison
Oh my! That is terrible, my neuro doen’t ‘talk bull shit’ but would never say it like that. He’s wonderful! I actually hope he’ll be around for a while. He wants me on the strongest treatment, so i can try and evade disability later in life. He said you’re 28, you’re young and fit lets not have it controlling you 
Can you get to Poole easily? It’s an hour and half drive for me, but he’s worth the trip, even my dad (who NEVER warms to new people) like him. Hope you get somewhere with complaints, that’s awful xx
I think but am not sure he specialises in Parkinsons.
One thing is definitely for sure Alison he is not my bloke - but that excuse of a neurolgist I had the misfortune of seeing is most definitely a big fat fail.
1 Like