Appalling Outpatients Appointment

[Tiggywinkles]

I want to share the awful treatment I had at my appointment with the Neurology consultant at my local hospital last week. At little background to it - I had not had a face-to-face consultation since April 2019, no appointment in 2020 and a telephone appointment in April 2021 by the consultant I've seen for a few years when he told me he was leaving. So, when I finally received a letter to say I had a proper face-to-face appointment this year I was pleased that finally I would be seen and assessed. The letter said it would be with a locum so that didn't bode well as they were obviously not going to be a permanent replacement for the consultant I had been seeing. Also the clinic was on a Saturday which seemed strange but I assumed with Covid-19 having cancelled many clinics this was a way to catch up. Anyway, onto the actual appointment. His knowledge of Friedreich's Ataxia was virtually non-existence - anyone could have found out more by 'Googling' it! He didn't know it was the most common type or it normally starts in childhood (mine is very late on-set as I was in my 40's) He asked me how my mobility was to which I answered it was a lot worse assuming he would get me to stand, walk and maybe do some sort of physical examination but NO, that was it!! He will arrange for Echo-cardiogram to be done as I have not had one since 2019. He then hoped to conclude the appointment without asking me if I had any questions but I said I wanted to ask a few things. So, reluctantly he listened. I wanted to know some facts about my original diagnosis in 2013 which he couldn't help with as he didn't have all my notes - why? I have now had the letter from the appointment which has gone to my GP and the final line sums up the appointment - we will review her again in a year's time - this 10 minute appointment was so they can tick the box that I've been seen!!

[wobblybee]

😕 That’s definitely not what you hope for after such a wait since the last normal appointment.

I had a disappointing appointment myself last year after finally ‘getting to the top of a list’ re a referral. I regret not standing my ground and asking more questions.

And, when I asked my GP to refer me back to a Specialist, he ‘bungled it’ ....I recently found he hadn’t followed through with the request..

[Tiggywinkles in reply to wobblybee]

Exactly! I came out of the hospital both angry and upset. I'm not sure how to get any better treatment as the consultant I saw in Bristol who was carrying out research into FA has also left. It seems that unless you are able to travel to either London or Sheffield to the specialist clinics then you're stumped. Anyone else have better treatment?

[Tallguy101 in reply to Tiggywinkles]

Hi that doesn't sound good at all. I travel to Queens Square in London once a year. It used to be twice, but it got too much for me. I see Paulo Giunti, who I have seen since day one, back in 2007. I find the clinic in the hospital excellent, I did have a telephone appointment in 2020 but other than that it been face to face.

I get hospital transport to and fro. I know it's difficult but for me the time spent is definitely worth it.

[Butcherpete]

Welcome to the club/my world ... I have found that the GP's I have had since my 2014 diagnosis know very little, if anything about the main condition of Ataxia, and don' get me started on so called "health professionals". I have just about given up on them all, and when asked, just reply "I am ok in my mental state, but my body (legs )are getting progressively worse" and just leave it at that, and struggle on regardless

[ddmagee1]

I sometimes go through similar circumstances when I see the Neurologist, when it comes to him being supportive and explaining and helping me find a way to deal with troubling Ataxia symptoms. A brief 15 minute appointment, perhaps once or twice a year, with the neurological specialist helps only minimally, concerning Cerebellar Ataxia, with me. Actually, I’ve learned much more from this blog group, Health Unlocked, discussing problems with other Ataxia victims, than I have from medical pros! Googling about my symptoms, and ailment, has been more helpful than what the medical people have said to me. There has been no rehab. actions set up by my Docs, to help me deal with Cerebellar Ataxia. The last several years, in my appointments, it’s been mostly about COVID, and taking protective action, or the Doc explaining how he protects himself, from COVID, seeing so many neurology patients. That’s hard to believe, but it is what has been happening. So, anyway, I can relate to your frustration! Thanks to Health Unlocked, I get a lot of support and good advice, from others, as I deal with mobility, and other problems, daily, living with Ataxia!

[paul456]

Hi Tiggy We are all entitled and need a professional assessment especially as it’s only ounce a year, although we can’t be cured we can change or up medication. I go to London and see a Neurologist and two days later the genetics team, it’s a long way for me to go but worth it. Try and get another appointment as you are not happy with the last one it’s a bit like wanting your house decorating and a plumber turns up. Some medical professionals are like a lighthouse in a desert very BRIGHT but no use whatsoever 😊.

You stay strong my friend.

[Guardsman68]

Hello Tiggy I’m sorry to hear thisWe are hearing on hear more often than not about frustrating and disappointing Neurology appointments and the frustration and anger we feel after such appointments and this is making us feel even worse than before we go into appointments. We go to face to face appointments thinking we are going to see an empathetic and understanding doctor who is at the top of their profession and they would have some but maybe all the answers to our questions seeing as our lives have been turned upside down and life is not what it was for us. But how wrong we are.

I recently had a very similar experience I had my follow up appointment four months after being discharged from a five week hospital stay on neurological ward

So I was hoping for more answers seeing as the neurologist swerved them while I was in hospital. I have been into this journey since August last year I had a bad fall at work and banged my head quite badly and after an MRI was told I had a brain lesion that was in the cerebella pontine angle and inoperable as it was stuck on three cranial nerves I have apparently had this for several years. I had previous MRI & CT in 2015 after several falls and lots of other things going on which I put down to getting old and daft 🥴 the lesion was found but someone conveniently forgot to tell me. So since then getting worse well a lot worse to the point I was asked to take time away from work in August last year as I was becoming a liability. I had another bad fall putting me in hospital for the five weeks and was informed I had cerebella ataxia. Wow!! What is that I asked but the answers I got were very vague so I was a little confused about what it was. So my follow up appointment came and yep the neurologist was an arse he was swerving all my questions all he said was you are being supported by the neurology rehabilitation unit and they will do what they can. Well that’s not good enough I said and I wasn’t leaving his office until he explained what the hell was happening to me seeing as I’m now in a wheelchair and can’t feed myself without wearing to food. He said you only have a 15 minute appointment and he had already spoken for ten minutes of that with me getting a word in. So I backed my wheelchair against his door and insisted he explain to me why I am being treated like this and that someone please just talk to me like a human being who’s life had been shattered. I stayed in that office for 50 minutes and in the end for a few answers which were basically what I already new from reading the post all you fine folks put in this feed. Well I’m seeing a neuro surgeon in June? But I thought it was inoperable just goes to show that if you push hard enough but being nice about it you may just get some answers.

Really sorry for long reply

but please don’t give up keep pushing on and stand your ground that is if you can stand 🥴

Keep well friends

[SueMillman Partner Ataxia UK]

Hi Tiggywinkles,

I wish we didn't hear this tale so very, very often. Sheffield and London are quite a long way. The Ataxia Clinic at the John Radcliffe Hospital in Oxford isn't currently an Accredited Specialist Ataxia Centre, but they have quite a large ataxia clinic with an expert neurologist and lots of our Friends go there. They also have a geneticist who is expert in the ataxias; and they undertake research projects.

There's more information here: ataxia.org.uk/wp-content/up...

Do contact the Helpline if you have any questions.

Sue

[Tiggywinkles in reply to SueMillman]

Hello Sue, Many thanks for your reply. I have been to Oxford in the past but swapped to going to Southmead when I took part in the G-CSF trial with Dr Wilkins. It was easier for me to travel to Bristol from North Devon too. Unfortunately I have also lost him as my consultant as well as he left last year.

So I am trying to find a neurologist with any experience of dealing with FA in the South West - any suggestions?

Heather

[Psalm119]

Hi,I’ve just read your post. I tried Oxford once but found there wasn’t the help I expected so I’ve not returned. Please let me know if you find better help in reasonable area! I live in Gloucestershire.

Psalm119