Forum

bad timing and no idea what to do....

Hi all you lovely people.

Hope you are all well and coping in your own ways with all that life throws at you. I am not diagnosed though have had all sorts of symptoms over the years.

I wanted to ask a what would you do kind of piece of advise as I am genuinly at a loss or perhaps just indecisive!

My issue is that I was referred to a neurologist who purportedly specialises particularly in MS and I did notice on my GP screen, it says ’ probably MS’ though of course only a shoulder specialist, a couple of physios and a couple of GPs have come to that conclusion. Anyway sorry I am waffling… My dilemma is that I speak at conferences here and there and am speaking at a relatively big one on March 22nd. I signed a contract for this last year as it is at a University and they like to do things formally. Sod really seems to have a way of playing with me as of all the days in all the year, I am also seeing the neurologist for the long awaited appointment! Ironically this happened once before and I put off the neuro (and also a uro appointment) and hence, have waited another few months.

Soooo do I confess to the conference organiser that this is going on and risk this being put around to delegates, parents, professionals that I speak to or just yet again, postpone the neuro appointment? Annoyingly, my arms have started playing up again, albeit not as badly as last time and I am having great trouble with an ankle too so I would like to see someone instead of popping pain killers constantly.

I know it is ultimately my choice but as I tell no one about this stuff, I have no one to ask that knows how important this appointment may be.

Thanks for ‘listening’ one and all and I send vibes constantly to you all

Jacqui

Hi Jacqui,

Sorry, but I think your appointment is important, and you should go to it. Especially bearing in mind NHS waiting lists.

How much are you obliged to tell the University about your reason for cancelling?

Although it’s a “contract”, are they likely, in reality, to enforce it (as in “demand compensation”)? If you told them you had to cancel for “personal reasons”. Would they demand evidence?

It can’t be exactly unheard-of that conference speakers have to cancel due to unforeseen circumstances. I can’t see why you should have to disclose the exact nature of your reasons. At most, it should be sufficient to say you have a hospital appointment.

I think it would be very unprofessional and unethical of the organiser to “put about” to other delegates etc. your reasons for cancelling, other than in the most general and unrevealing of terms (e.g. “due to unavoidable other commitments”). I’m sure data protection laws alone mean they can’t just go telling all and sundry you have “neurological issues” - even if you had disclosed that much.

I have no idea of your financial circumstances, but the only other solution that occurs to me, if you really do want to speak at the conference without going right to the back of an NHS waiting list, is to consider a private consultation - ideally with the same specialist, as most do private practice as well.

A one-off private consultation with a neuro would be of the order of a couple-of-hundred pounds, so your conference fee might well cover it. :wink:

If he needs to see you again, he may well be able to refer you back to himself on the NHS - that’s what my one did!

Hope this offers some food for thought.

Tina

Keep the appointment. Your health is much more important than any lecture.

They can find another speaker (especially if you give them notice), but getting another neuro appointment, well… it might be a very long wait!

It this University’s contracts are anything like my University’s contracts, they are purely an HR/payroll thing and it is no big deal to cancel.

If you’re worried about gossip, why not tell the organiser something that either won’t be talked about (“female problems”) or that you have been double-booked or something (so they might tut, but not gossip).

Karen x

I agree with Karen, your health is the most important thing - physically and mentally. The mental anguish caused by yet more waiting to see a Neuro cannot be underestimated. Be kind to yourself, put your health first. As you say, this appointment is really important. Teresa xx

Thank you so much TIna and anonymous,

I hadn’t thought of seeing the neuro privately at all but maybe if I explained the situation I could get an appointment. The annoying thing is I only took this booking because money is so tight and it is relatively easy to get to via train and I can do so there and back in a day and so can organise carers. My family know I have ‘dodgy arms’ and my adult children know that the doctors are querying MS but I don’t really have anyone else close to me to tell. My sister knows as of tonight, that I am going to see the neuro and thinks it is more important to see him/her rather than speak at the conference so I will phone tomorrow about a private appointment.

Thanks once again.

Jax

Hi again Jax, If you make the decision to go privately, there is no requirement to “explain the situation”. You would be a paying customer, so what you do would be entirely up to you. The whole point of going privately would be you don’t have to beg, or plead special circumstances, to get seen sooner. Generally, you should be able to be seen within a fortnight. If you happen to be lucky, you might even get a slot the same week. I would start by Googling the name of the specialist, and finding out if he accepts private patients - it’s very likely he does. If you can find out the name of his secretary - his private sector secretary, that is, not his NHS one (he probably has one of each!) you could ring and ask about prices, and about availability. Also whether he would need a new referral from your GP, or could act on your existing NHS referral. I went the other way - started private, then rejoined the NHS. They don’t bat an eyelid! He even had dual-headed notepaper, with his private AND NHS contact details on it - specifically for patients like me, who have dealt with him in both capacities. Tina