Good morning…just wondering if anyone has had an appointment with a consultant or PD nurse in any form?
My HWP has not had any contact with anyone since Oct 2019, thats a long time…
We are being told constantly that covid cases in hospitals are at an all time low since the beggining of the pandemic and the NHS is open…so where are all the consultants,PD nurses and even GP’s?? Why are they not holding clinics etc…
I’m very sorry to hear that and think you should maybe contact his medical team and ask them given the length of time. My own appointments have continued at 6 monthly intervals seeing the consultant at one then the Parkinson’s nurse at the other. Of the last three 2 were telephone reviews the other face to face. I can also contact them in between by phone or email if I need. Entirely different to your experience. I wish you luck. Let us know how you get on.
Tot
Not been on here for ages.
I have had face to face and video and email together with phone calls
@Babesbrown, My advice to you is to phone your Consultants Secretary and speak to them or leave a message such as the case may be or, if you have one speak to your local Parkinsons Nurse. My last appointment was at Bristol back in September.
Les
snap, am at a loss how to make the neurologist see me - my phone calls - one for 3.27 and this latest 2.22 mins hmmm
Hi my last appointment was last September ive had 4 cancelled since ,keep moving my dates ridiculous i understand we have covid but nhs is still running
Dear Babesbrown,
I am sorry to hear that you have not seen anyone since 2019. I have been extremely lucky I have been seeing my Consultant and Nurse at 5 or 6 monthly intervals. I have also had phone appointments one of which was 2 weeks ago. I agree with Tot you should keep phoning them until you get some joy. I know a friend who has the same problem. Would you mind saying which Hospital you go to.? Do you have any other Hospital near enough for you to try?
Let us know how you get on.
Best wishes Sharon
We live in Wiltshire and the hospital is in Bath but PD nurse is based in our local hospital in Trowbridge.
My husbands condition has changed so much since he last saw anyone…sad times…
Hello again, as your husband’s condition has changed since he last saw anyone I think it important that you speak with someone from his medical term. In my earlier reply I wrote that I am able to contact my consultant or PD nurse between appointments and a change in my condition is the most likely reason I would do this. It is entirely reasonable to think that the change in his condition is due to his medication needing review. Even if this is not so, he needs to be reviewed so that the
appropriate treatment can be started. Please don’t delay any longer. If they are not available leave a message asking that they contact you asap. If you do not get a call, leave another message - in other words make a bit of a nuisance of yourself. You would be entirely within your rights, I have copied this from the NICE Guidelines for Parkinson’s
Review of diagnosis
1.2.5 Review the diagnosis of Parkinson’s disease regularly, and reconsider it if
atypical clinical features develop. (People diagnosed with Parkinson’s disease
should be seen at regular intervals of 6–12 months to review their diagnosis.)
[2006]
Your husband’s last appointment was more than 12 months ago.
Good luck
Tot
My husband has continued to have appointments both at hospital and on phone, his next appointment is with the Parkinsons nurse at our village hospital next week. Try emailing the Neurologists secretary.
Hello…just thought I would update you about appts.
I emailed PUK for advice and explained that problem we were having…PUK rang me back the next morning and said I needed to speak to 1 of the nurses…the same afternoon a nurse from PUK rang me back…
She has given me advice as to where to go and what to do…so emails have been sent to GP for referals my Husband needs etc…we now wait for the local advisor to contact us…PUK nurse said that it is not acceptable in any way that my Husband has not had any face to face appts for such a long time. My husband has only ever seen registrars for 5 years…
So we now wait and see if we have any responses from emails etc…
We will keep you updated. We have been told to contact PUK and they are there if we need them…
Thankyou PUK and everyone for your advice and for taking the time to reply to my questions on the forum…
Well…we followed the advice given above
Sunday: email sent to GP surgery.
Monday:GP rang and spoke to my husband,he gave us numbers to call for Consultants secretary and Folliw up appointments number…
Monday: we rang consultants secretary and left voice mail…
No one contacted us for the next few days…
Friday: after a week of no replies from the consultants secretary I insisted my husband rang the Follow up appointments line…
Surprise! My husband is not on the list to be seen any time soon…my husband said he had spoken to PUK and his GP and he need a face to face appointment and needs to be seen as it is 2 years (April 2019) since he was last seen…
So now we wait…
Literally been waiting 6 months for my appointment since my diagnosis in October, had terrible time! Been counting down the days to see consultant on Monday - just opened a letter … zoom call. I burst in to tears. I’ve tried everything, can’t even go private because they say they can’t access my records.
It is so disheartening all of it…sending a virtual hug to you…I hope my Husband does not get sent a zoom appt…
May I make a suggestion if you get nowhere and that’s to contact your local cllr or MP and get them involved, he or she is your elected representative after all and they can apply pressure and it can bring results. Best thing is to write a list of what you have done and include anything else you consider relevant for eg NICE guidelines. I think it is worth considering.
Tot
Update…
Yeah!!! Got a face to face appt next Thursday at the hospital with a consultant…
Brilliant news! Good luck I hope it goes well.
Tot
