It will be tweaked. We want to hear your thoughts.
E mail us at admin@moversandshakerspodcast.com
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...