That was the first thing that my neurologist told me when I met with him this afternoon – a year after I last saw my Epilepsy Nurse, Frank La Rocca. Last August I had to cancel an appointment due to a seizure that caused me enough injury that I was unable to get about for a week or so. Frank rescheduled our meeting, but then I recieved a letter informing me that he had to cancel and that I should wait to hear from the neurology department again.
I certainly did not expect to recieve a letter a week prior to the Head Neurologist wanting to see me. I knew that Frank had been ill for quite some time… but if you get a letter appointing you with the Head Honcho at short notice you know something is very wrong.
Frank is/was a well respected member of Broomfield’s neurology team. Even though he must have had a myriad of patients he would recognise every single one. He spotted me in a hospital corridor when I was on my way to have my dental surgery and came to chat, and if he was running late he would come to the waiting room if he had a spare moment and inform each of his patients personally that he was sorry about the delay but that he’d get to us all as soon as possible. He cared – and that is the most important thing that somebody who specialises in neurological disorders can ever do. He never forgot a face or a name.
I know that Frank is/was a spokesperson for Epilepsy Action and that he gave a talk in Colchester last year. I was too unwell at the time to attend, but now I wish I had.
Frank was more than just an Epilepsy Nurse; he became a friend – somebody that I could trust. I could open up to him, relax with him.. he would often return phone calls in which he’d recieved an answerphone message from me while I was crying and not knowing what to do.
I don’t know where Frank is now. I don’t even know if he still is. All I know for certain is that I’m to be assigned a new Epilepsy Nurse – a stranger who will read my notes and make assumptions before they even meet me.
I don’t want a new Epilepsy Nurse; I want Frank. Being autistic it takes me so long to learn to like and trust somebody in the medical field and I hate that I’m going to have to start all over again with a complete stranger.
Wherever you are Frank, thank you so very much for doing your best to help me for the last five years. I will miss you.
Oh, and you all may be wondering what’s being done about my autistic meltdowns. Nothing yet, as I’ve to increase my epilepsy medication over the next eight weeks and we’ll see how we go from there. At least my neurologist is now aware of the issue.
hopefully Frank is reading this and might get in touch with you
He may hear of this post through Epilepsy Action… I have no way of knowing. But if he’s still out there I want to know that he’s okay. He is such a lovely man.
I hope Frank is okay. It’s hard to lose someone you have grown fond of, even if he has just moved on to a new position. I hope that, and not his health would account for his absence.
I hope so too – very much. On the other hand, his having to cancel my appointment with him, no word for months and then suddenly getting an appointment with the head neuro with less than two weeks’ notice doesn’t point to a positive outcome concerning Frank’s health. I wish I knew what was going on, as I’ve come to like Frank very much over the years and am extremely concerned as to his health and welfare.
that’s a pity – it’s sad that Frank couldn’t say goodbye. It’s an odd thing, this relationship between patient and doctor, at some level it can be so intimate and then you’re reminded, it’s only professional after all. I do hope it’s only that though and not an illness – on second thoughts.
I hope that he’s merely taken early retirement or something like that. He really is/was a good man.
I really hope that in writing this post you may get to hear some positive news of Frank.
As it’s hard to know what to do without knowing the circumstances of the situation, I wonder if perhaps writing/typing a personal letter to Frank, saying how much difference he made on your visits as a supportive and dedicated person would help at all?
It isn’t necessarily something that you’d have to send, although perhaps the Personnel Department at the hospital would consider a request that it be forwarded to family or friends, if that’s considered appropriate.
I’ve found this helpful in the past, although I realise everyone has different ways to do things.
I’ve contacted the Epilepsy Action Advice team; they might know something and have assured me that they’ll be making sure that he’s replaced. I can’t go waiting a year between visits like this – my condition is too unpredictable. I’m going back in three months but don’t know who I’ll be seeing and it’s worrying me.
I really, truly hope that Frank is okay and has just taken early retirement or something.
I’ll just add my good wishes too that the person you do see will be someone that understands and promotes a trusting relationship, I also hope that’s sorted out on a way that doesn’t cause you additional stress.
I do understand what you are saying it takes ages to trust a clinician be it dr or nurse. It even worse when someone has made such an effort to know, care about and help you just disappears. “oh! Yes Mr Brown has moved on not here anymore.”???
I do hope you will cope well with the change l know it is hard for you and sadly l can do nothing to help you except that I hope, really hope that your new nurse if as good to
you as Frank. May I add Mr Brown where ever you are you were the kindest dr you were patient and helpful and honest unlike your boss. I was shocked when you disappeared. Big hugs Mrs Tribble. Xxxx
The dentist who saved my life moved on to Harley Street – he deserved it on account of his brilliance but I was totally gutted. I was upset when my female doctor (a lovely Indian lady who had travelled around the world and treated each patient as a friend) retired too, but her replacement is just as lovely as she was. My male doctor has now reduced his working hours and I’m hoping that this doesn’t mean he’s about to retire as well!
I shall miss Frank terribly – the department head of neurology is so austere that I can’t relax around him. I hope that Frank has simply chosen to retire early and that his health is slowly improving.
Life is just so harsh , sorry you deserve better.
Hope you hear some positive news about Frank, and that your next appointment is with someone who has the same sort of people skills.
And Frank-ly, my dear, they don’t give a damn that he is gone with the wind?
It is unusual to have continuity in a medical carer these days. One of the really retrogressive features of progress.
You’re right; five years is a long time these days to have the same medical professional. I don’t know what his illness was – just that he was ill – but it’s robbed Chelmsford’s epileptic community of a very good man.
We were lucky. Our family doctor, from the old school, was there for us for many decades before he finally retired.
hi! I didn’t see this post, sorry to hear you are having a rough time and that you have to increase your medication. i hope that you have managed to be reassured about frank, and that your appointment goes well with the hospital.
hi! i didn’t see this post, i am sorry to hear you haven’t been well and are increasing medication. i hope you find frank and are reassured, and also that your hospital visit goes well. best wishes ruth
Hi, thanks for stopping by! Wanted to let you know that I’ve submitted my piece about my experiences with autism for you. As always, feel free to edit and correct any mistakes
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I have not ever heard of autistic meltdowns before you explained D enduring it and still loving you – that previous post. You are an excellent spokesperson. So very choice.
I truly wish you so much well.
Thanks Noeleen. I’m grateful every time I educate somebody – because it means that my blog is doing what I set it up to do – to inspire, educate and offer support.