Experience of neurology during the coronavirus c... - Ataxia UK

Ataxia UK
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Experience of neurology during the coronavirus crisis. Asking for your help!

HarryB
HarryBAdministrator

Dear all

We have a virtual meeting of the Medical Advisory Panel of Ataxia UK in a couple of weeks. One of the topics we will be discussing is how neurology appointments have been affected by the coronavirus climate that we unfortunately find ourselves in. I would be so grateful if you could let me know about your experience by answering the following questions, so we can gather some anecdotes of how neurology appointments have been affected by the coronavirus climate. Please feel free to either put your accounts on the main forum or message me privately (HarryB).

1. Where do you live?

2. What hospital do you go to in order to see your neurologist?

3. Have your appointment(s) been cancelled during the coronavirus crisis?

4. If your appointment(s) has gone ahead how have they been delivered eg, telephone, video calling?

5. Have you had any access to physiotherapy, occupational therapy or speech and language therapy and if so, how have these services been delivered to you?

Please do not feel bound by these questions. You can say anything you would like! They are just a guide for the kind of information that will be helpful to us.

Thank you for your help in advance.

Best wishes

Harriet (HarryB)

15 Replies
oldestnewest

I live in South Lincolnshire and have been waiting for a neuro appointment since January. I was told at the time that the waiting list was so long they could not offer me an appointment for some considerable time. I don't expect to get an appointment this year as things stand.

I live in Preston, Lancashire. No appt with Neurologist for Cerebellar Ataxia but appt for cervical dystonia injections due in April at Royal Preston Hospital were cancelled.

Speech & Language therapy last week via Google Duo (video) & now weekly until we can get together.

I was also due to have a blood test in March at GP surgery. I could have gone but chose not to due to Covid19. It's far too difficult for me with not driving & being in a wheelchair full time. Can't risk it.

Grapes12
Grapes12 in reply to Ginger1

At my surgery they are doing blood tests from the car for those shielding. Like you I am a fill time wheelchair user but needed an urgent blood test; they had lots of PPE on and I wore a face covering. Just thought I would say encase that helps.

Ginger1
Ginger1 in reply to Grapes12

I think doing blood tests from the car's a great idea.

For many years I used to go for a once a year check-up at the Ataxia centre in London with dr.Giunti. Some years ago I asked for a transfer to a neurologist in Cardiff because London became to difficult to go to. A year ago I had my first appointment there and this May was supposed to be the next appointment. It was not cancelled but I phoned and asked what would be the best thing to do. I was advised to cancel and they would send me a new appointment . Till now, a month later, it has not arrived but my other cancelled (not neurological appointments and cancelled by them) also have not arrived so I am not worried. All my appointments are just for check-ups and there is no cure anyway.

Piero
Piero in reply to klazien

Interesting Klazien. My appointment at the neurology dept at the Heath Hospital was cancelled some six months or so ago with a promise of a re-arranged date. Nothing has been offered. I can understand the situation at present due to the covid emergency but before that appeared I heard nothing.

Hi Harriet,

I live in Farnham, Surrey and my GP Practice is in Aldershot, Hampshire, only 1/2 a mile away. I was referred to Southampton Hospital (also Hampshire) and I have been going there for an annual check-up in their Ataxia clinic for 7 years.

My March 17th appointment I cancelled after discussion with them and we re-scheduled for June 9th rather optimistically it now appears. They wrote 2 weeks ago to cancel that, offering a telephone appointment at 11am on 16th, but as I have an online class at that exact time and I was reluctant to miss that I asked for a later time-slot. Just yesterday they telephoned to offer a 2pm slot which I am delighted about.

I have nothing but praise for the whole set-up there and their consideration has been faultless. It would seem I am fortunate in that the attention I receive at Southampton is first class in comparison to the difficulties others find elsewhere. I exclude the London Clinic from the above as I volunteer there and am acquainted with Professor Giunti and her team and familiar with their work.

I am not receiving any other therapy elsewhere, although I do have carte-blanche to talk to/see a local physiotherapist in Farnham Hospital and had planned to see her if it had not been for Covid 19.

Strangely my annual visits to Southampton have usually been very straightforward although this year I was quite looking forward to discussing the fact that my Ataxia has quite definitely worsened over the past 15 months. I now have to use a walker whereas previously I only used a walking stick. I dare say that in my telephone appointment this will be a subject on which I'll focus.

After the appointment I'll appraise you of anything of interest that is relevant.

Regards,

Derek.

I live in Greater London and I had an appointment at London Ataxia centre in May which was changed to a telephone consultation. Ths was adequate as I was waiting for test results which I was given. I now have another appointment to attend in January 2021 (hopefully). I would prefer to be seen as I think the consultant would have a better picture of how I have deteriorated since he last saw me 18 months ago.

Hello,i live in suffolk my appointment with professor Giunti was for 4th of june it was cancelled but she was kind enough to call me on that date,i hadn't seen her before.my spirits were lifted knowing i hadn't been forgotten,i was surprised to get a letter a few days later with a plan for the future i.e scans and bloods. It may be some time before i get a face to face meeting but i know im not forgotten,can't thank her and the team enough for their help.

Hello Harriet, I live in Suffolk and go to the James Paget Hospital. I was due to see my neurologist but instead had a telephone consultation followed by blood test. I have an appointment for a year’s time. I had an appointment for the London ataxia clinic at the end of July this has now been put back to October. If I phone the local hospital my OT will phone me back. I am unable to walk without assistance so the nurse came to me to take blood. I have been classed as extremely vulnerable and have support from the government as well as priority slots for the supermarkets and I have to fill in an online form weekly to make sure I have no other health problems.

I ĺive in Droitwich & attend neurological appointments at the Royal Worcester hospital in October 2019 I had a letter to say a new neurologist is going to be appointed in due course.

my appointment was due in January 20 . I phoned up for a second time at the beginning of January & was told they still haven't found a replacement, & will send me an appointment

when a new neurologist is found. It's June now & I've still not heard anything or been contacted in any way. I know I can contact my GP if I need to.

Hi Harriet

I live in Southampton but have a very different experience from Derek. I was diagnosed in 2014 but fell through a hole caused by maternity leave, so eventually got a referral from my GP in 2017 because I had specific questions to ask.

Have not been contacted since and wasn’t aware they had an ataxia clinic.

I have been quite happy with this as the visits take for ever, with a lot of waiting around, just to be told what I already know.

Even my surgery ignores my ataxia and only makes contact about age related issues.

Fortunately I’m more than capable of sorting myself out.

Doubtless if I made an effort they would fit me in.

Nigel

Hello Harriet I think I sent a post to you when my husband who is 88 developed Covid 19 on March 10.As I rely on him for help around the home I found this very worrying as he was very ill quite suddenly.Somehow I found extra strength to care for him,but since then my mobility seems to have deteriorated .I live in Hertfordshire and first met Prof. Guinti 20 years ago.My annual appointment was in May.I had a successful telephone consultation then with Prof Giunti and have my next appointment in February 2021 at the London clinic.

It would be interesting to know from the Medical Advisory Panel whether it is usual to feel anxious about going out after lockdown.I haven’t been out of the house since February 19 and don’t really want to now and having to use a manual wheelchair outdoors anyway.

Best wishes.

cclive35
cclive35 in reply to Trinity1948

Just read that and I think your amazing!!!

Can I ask how long you have been married? Please get yourself out a little bit if you can after lockdown even for a tea or a little tipple!!. I know a lot of people would miss the experiences and stories you have to tell and it would be good for you too. I'm hardly ever on here but it's stories like that that make me realise that give me a boost, thankyou

Hi

I live in Long Sutton, the hospital I attend to is in Kings Lynn, Norfolk.

I had my first appointment in January 2020 and then supposed to have in March, had a phone call instead. My next appointment was at the beginning of May.

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