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Don't know what to do. Advice please re appt

Hi all Long story short after many months, appointments, scans and symptoms, neuro sent me for another MRI of brain and full spine on 14th April. I had my neuro follow up on 4th June all booked. He said at last appt and in subsequent letter to GP that he believed I have MS and the scan he was sending me for was ‘to confirm diagnosis’. I have been mentally preparing myself for weeks and have been extremely anxious about the appt. it’s a big, life changing appointment I expect. I have received a letter yesterday telling me that due to unforeseen circumstances, my appointment has been moved from 4th June to 23rd July!! I CANT wait that long. It is going to kill me. That will be over 3 months since I had the scan. And I have been preparing myself for 4th June. I just can’t understand how they could possibly think that delaying an appointment by 7 weeks is acceptable. Surely it isn’t? What do I do? Should I ring the neuros sec? There’s a number on there for the appointments team. I will ring them, but what do I say? Is the mental anguish this delay is going to cause, a good enough reason for me to tell them the new appointment is unacceptable. Any advice would be greatly appreciated PG xx

Also - this is me. Don’t know why it’s posted anon xx

Hi pandagal, its is really stressful all the waiting they make you do i know i feel like ive been waiting forever and now in glad as my symptoms get worse i don’t know if i want to know anymore. But i think you have a right to phone the neuro sec if you feel distressed by this, its not fair to suddenly move appts but in my experience they do tht alot. My docs been phoning the neuros for the past week trying to forward my appt as she feels 8 weeks is not an urgent appt. But in your case i would phone i don’t know if it will change anything but at least its worth a try. Whatever happens be strong, you’ve come this far if you have to wait be patient you can do this. Char x

Hi there The gap between my first appointment and my next is six months, but I get why the Neuro has done this as I have had ENT appointments inbetween to help towards a diagnosis. Speaking to the Neuros Secretary is a good idea as Char suggests even if the appointment isnt brought forward maybe she can explain why the change! It’s a long road sometimes to hopefully finding out what’s what, and hard not to get anxios and cross along the way. Hope the secretary can explain and put your mind at ease x Mich x

Hi both Thank you for your replies and advice. I really appreciate it. I think the thing that has upset me the most is the mental preparation I have gone through, steadying myself for what’s to come. And for them to send me a letter cancelling my appointment and putting it back by 7 weeks, when it’s already been 2 months since the June appointment was made has been heartbreaking for me. I understand appointment wait times are long. But I have already waited long enough. Adding 7 weeks to that wait is cruel. And not to give me any explanation is even worse. How can they justify pushing the appointment back by 7 weeks?? I probably sound impatient and miserable. But I know how crucial this appointment is going to be. How can they expect someone to wait for 14 weeks to hear the results of something as important as a brain scan. I feel like it’s wrong and unfair. Sorry - not in a good place today!! PG xx

Can you request a cancellation?

As well as calling the neuro secretary to see if you can be seen earlier, could you also call your GP and ask them to get the results of the scan and discuss/explain them to you? My GP gave me a copy of mine and I have requested that the results of all the blood tests and the lumber puncture go to him too. He can’t diagnose or prescribe drugs but he can explain what the results of these tests indicate. He’s also a lot more human than the neuro registrar I’ve seen so far.

Take care x

I will call and request a cancellation. I’ll also call neuro sec and GP too if needs be. I just feel so deflated about it all. And it just seems crazy that after cancelling my appointment, the earliest they can squeeze me in, is in over 8 weeks :frowning: More battling with the NHS next week then. Joy. PG xx

Hi P, I know what it`s like when weeks, months and in my case, even years pass by and we are no wiser as to what the chuff is going on in our bodies.

My appointments always get changed too…through sickness, holidays and neuros leaving the area…I`ve seen 16 in as many years!

Of course you are felling annoyed, upset, deflated etc…that`s only being human hun.

But take it from me…a very old hand at this game of cat and mouse…you will survive it…honest injun kid!

But maybe ringing the neuro`s sec and saying you are available, at short notice, if there is a cancellation.

Hang in there my sweet…with or without a diagnosis…life goes on, trust me babe.

much luv Pollx

Hi Poll Thank you for your reply. I know that this time will pass and also, in the grand scheme of things, I haven’t been in limbo for anywhere near as long some people. I just can’t get over the fact they have cancelled my appointment and think it’s ok to give me an appointment that is an additional 7 weeks away! I genuinely feel that is 100% unacceptable. I’m just frustrated and upset. This whole process is hard enough as it is without the NHS treating me like an inconvenient appointment rather than a person. I am unbelievably stressed out. I am aware I am just moaning now. But I could punch the entire appointments team/neuro in the face right about now. I’ll stop whinging now and just try to get over it. I have private medical at work, but it didn’t kick in until Jan and my ON and general investigations started last Oct. Typical. PG xx

Ok, so, humble pie time. Called appts team this morning - my neuro is on compassionate leave. So I feel bad now for trashing the system a bit.

I have called his secretary to ask about whether I could possibly see someone else or have the results/radiologist’s report sent to my GP or something. She was so nice. I explained that the appointment in July would be 14 weeks after my scan and that I fully understood that my neuro wouldn’t be able to see me, but if I could get any information, it would be really helpful towards making me feel a little less anxious. She was very kind and said she understood that the wait must be awful and would see what she could do.

She called me back very quickly and said that apparently my neuro will actually be around tomorrow and she has asked him to either give me a call (if he thinks it’s necessary) or to arrange an earlier appointment either with him or a colleague.

So fingers crossed I may hear something tomorrow.

I feel terrible for the neuro though, I don’t know what’s happened, but it sounds as though it is something not very nice :frowning:

I must remember that although I am anxious and not having the best time of it at the moment, that there are worse things that could happen

PG xx