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  • Writer's pictureMark Mardell

The Parky Charter

Updated: Mar 20


It will be tweaked. We want to hear your thoughts. 


The Parkinson’s community has been too quiet for too long. 


We, the Movers and Shakers, are 6 individuals who started making a podcast about the

condition in 2023. Nominated by the Broadcasting Press Guild for Podcast of The

Year we now find ourselves (much to our surprise) as the voice of Parkinson’s.

We have received thousands of letters from People with Parkinson’s (PwPs) and

they have given us a solid sense of how Parkinson’s care looks around the

country. It is not a pretty picture: unfair; uneven; unsatisfactory. 


Given our high profile careers in the media and the law we are

well aware change rarely happens without making a fuss, so in this election

year we intend to raise something of a stink and both move and shake the powers

that be. We have come up with a five point Charter and here it is. 


1. Many of the complaints we hear centre around delays in

diagnoses and length of time between subsequent visits. THE NHS (NICE) guide

lines are perfectly clear - every person referred by their GP for a possible

Parkinson’s diagnosis should see a neurologist or geriatrician within 18 weeks.

This often doesn’t happen - it should be policed and enforced. After diagnosis

there should be a maximum of a year between neurological appointments. 


2. When first diagnosed every PwP should be given as of right a

leaflet containing essential information about Parkinson’s. At the very least

this should be the Parkinson’s UK pamphlet but we feel it is also vital that

the newly diagnosed should be given information relevant to where they live, and

including local support groups.  


3. Parkinson’s is incurable - but it doesn’t have to stay

that way. The government should commit to a major increase in funding for

research into Parkinson’s from today’s level (£6.7 million in 2021/22).  


4. A regular yearly meeting with a neurologist can only help PwPs

to a limited degree. Everyone should have a personal plan, ensuring every PwP

should have access to advice from, and treatment by, a multidisciplinary team

including Parkinson’s nurses, physiotherapists, nutritionists and speech

therapists.


5. People with this as yet incurable degenerative condition should

never be denied benefits because they "might get better" - instead

when diagnosed they should be given a "Parkinson’s passport" which

would give an AUTOMATIC right to certain benefits, free prescriptions, a

"blue badge" and other clearly defined services. Any remaining

services which do require assessment must be undertaken by an assessor trained

in an understanding of the complexities of the symptoms of Parkinson’s,

especially the variable and intermittent nature of some symptoms.

 
Watch some behind the scenes footage of our Parky Charter episode being recorded...


 


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3 Comments


Guest
Apr 01

We suspected Parkinsons for months but could not see a Neurologist. We were so worried that we paid privately and had appointment streight away. Diagnosis was confirmed. We then saw the same Neurologist 6 months later in NHS hospital in February 2022 and the Parkinsons nurse shortly after.

We saw the Neurologist 2 more times after that . Husbands condition became worse . We were expecting an appointment in October 2023 but no appointment came .A phone call to secretary in November confirmed that we should of had an appointment in October and one was made for us in December. That appointment was cancelled and so was the appointment after that in January. We got to see Neurologist in Februa…

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Guest
Mar 21

I love what you are doing but here is my initial observation. When I saw th name "Parky Charter' my immediate thought was that I was was going to read something humorous relating to PD, much along the lines that we would make great cocktails, because of our natural shakes. Then, I realised it was serious. This is a hugely serious ask of politicians with five hugely serious wants on behalf of people with Parkinson's who struggle daily. Why not just call it the Parkinson's charter and drop the cute name, if you want to be taken seriously?

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sandra.cornwell
Mar 19

Totally agree with all of the above, I”ll never forget the day of my diagnosis, I was having pins & needles in my arm and feeling tired etc, I was in the room all of ten minutes, no one was with me just told this is Parkinsons no treatment needed see you in 12 months, it was 2days before my retirement from the NHS after 35yrs of nursing i was given no information nothing at all, I then paid for a private consultation and although diagnosis was the same i started meds straight away and given time to discuss and ask questions

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