Hi everyone i was due to see parkinsons nurse on 25/11/21 but this has been changed to 10/3/22 this will be nearly 10months without seeing a parkinsons nurse or consultant i have to work and face the public so why can’t our medical people ,stop changing appointments and do your job and help patients that need your help. ime rather disgusted with the medical profession regarding parkinsons

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Yup. I was offered an “Emergency appointment” with a wait of nearly six months.

The service that has been given to me this year has been disgraceful. If your meds are working and no change to your condition they are friendly and helpful I had this for 11 years, as soon as I needed help no help whatsoever!!! Animals are better cared from but I’m very disappointed and disgusted with the level of care I’ve had this year which is zero… the nhs I have no complaints about just parkinsons dept no follow up phone calls no emergency appointments nothing. Disgusting

I had an 15 month gap between appointments due to Covid.

I’m at an early stage in my Parkinson’s, I’m 50. At the moment I’d be happy seeing the neurologist every 18 months. I find 6 monthly appointments a bit intrusive, I’d rather just be left to get on with my life. This would free up the neurologist to see those that need support a bit more often.

Now I’m beyond appalled -

I saw my NHS consultant over a month ago and they said that I needed a certain medicine which might help - because I’m really struggling - and they would write me a prescription.

I’ve checked the post, and my online GP records everyday since then, but still nothing about this urgent prescription I need.

So I’ve just phoned the hospital to ask - and the secretary said they are so far behind that they are only just up to the paperwork for the week BEFORE my appointment last month, and I might expect them to write up my consultation next week, or the one after, and then it would be posted (by carrier pigeon or a message-in-a-bottle) to my GP, and I might get this urgent prescription (which could improve my quality of life, or at least ease my pain) before Christmas.

I have had one of my twice yearly appointments cancelled each of the last 6 years. To be honest not much comes of the appointment i do get to attend so im usually glad i don’t have to go.

My husband has not had a face to face appointment for a long time although he has had some phone calls and video calls. However he has an appointment at the hospital for Friday and they even phoned to ask if he needed help to get there. The hospital is not easy to get to using public transport and my husband no longer is allowed to drive due to the Parkinsons.

My husband has not seen or heard from the parkinsons nurse for 2 years… Have heard that other people are being seen by her but not my Husband…
My Husband had covid a few weeks ago and was really sick, had not been able to keep anything down for 3 days not even water or his medication…his parkinsons went into total overdrive… Tried ringing the GP surgury for advice…no joy there was on hold for over an hour then got cut off…then rang 111 for advice to be told to ring the parkinsons nurse for advice… .no joy there…
In desperation I rang PUK and a nurse from there rang us back within 5 mins…gave us advice and were very helpful…
Still have not heard from the local parkinsons nurse…
Totally despondant with the support my husband is getting or should I say NOT getting…

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Hi everyone, :wave:

Apologies for my delayed response to this thread. There were a few things that I had to clarify with my wider team.

Thanks everyone for sharing these accounts on this forum. We’re very sorry to hear about the disappointing treatment you and your loved ones have experienced and sadly these are stories we have heard before, especially over the last two years.

We’re aware that access to doctors, nurses and anyone else you might see for care has worsened during the pandemic as the whole NHS has been under pressure. We’ve been working to challenge local issues in our campaign work when they’ve risen and have been speaking to the government regularly about how services need to be improved urgently.

We know that a number of Parkinson’s services are still dealing with staff shortages and redeployment. We know that they are working hard to clear the backlogs but if you are worried or would like to speak to someone about the access to your service in the first instance please call our helpline on 0808 800 0303. If you want to get involved in trying to address an issue in a specific area or learn more about our work nationally please email [email protected]

I hope you find this information helpful.

Best wishes,

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