Lots of comments I could add but one is definitely about a quality booklet resource on diagnosis. HwP was diagnosed 3 years ago took 8 months to actually get the tests & now we know symptoms some had started at least 15 years prior! No info- if you have x, y & z see your GP etc. Once diagnosis it was a huge blow & no support or information at this point. Couldn't get in contact with specialist nurses. Our GP did loads of 'fighting' on his behalf. Only through, a lot of digging we found various organisations- it's not well known. To us it was "old people shaking" we had nothing to educate us.
On the other hand, last week I got a cancer diagnosis (please, no comments, this is not about me). The info on cancer education is vast- you have adverts for screening & symptoms to act fast, yes I know time is if the essence but not the point I make. Mine is totally curable & I caught it literally with 1st symptom. I have been given a rediculous amount of information on the day (most of which I don't want to know) by a certain cancer charity via specialist nurse- I have 2 specialist nurses, given direct line & emergency number. This time next year I'll be fine- HwP won't be. I definitely think education on symptoms, what PD is and info booklet on diagnosis with what, how etc when & where to get medical help, access contacts to specialist nurses/ emergency and details of charities/support etc is definitely needed. I'd be up for helping in terms of patient experience on this.
It’s a terrible idea. Any charter would be like the American constitution, needing amendments to keep up with changes in the real world. You’ll find yourself metaphorically committed to the right to carry automatic weapons while everyone has already agreed that the rule of law is a better option than raising local militia or anything from the Wild West. My analogy is deliberately unsustainable, as would be any charter. Please stick to entertaining and informing rather than being another pressure group. Happy Christmas.
I think another issue is raising awareness, my sister had Parkinson's and she had similar problems to the ones mentioned here. As you are all people with a high profile, your views would be listened to, TV and media campaigns etc. I love the podcast and would like to wish you all a very Happy Christmas and a healthy New Year, and keep up the positive attitudes!.
Great that you are focusing on the psychological side of the condition, we at Friends of Parkies have a membership of over 80 see our website at info@friendsofparkies.co.uk a Parkinsons support group charity. Best Regards, Phil Bowen Secretary.
I only have two comments to make, 1) If not you lot, then who? 2) Agree with Jeremy, an entitlement to a clear diagnosis within a given time limit.
Lots of comments I could add but one is definitely about a quality booklet resource on diagnosis. HwP was diagnosed 3 years ago took 8 months to actually get the tests & now we know symptoms some had started at least 15 years prior! No info- if you have x, y & z see your GP etc. Once diagnosis it was a huge blow & no support or information at this point. Couldn't get in contact with specialist nurses. Our GP did loads of 'fighting' on his behalf. Only through, a lot of digging we found various organisations- it's not well known. To us it was "old people shaking" we had nothing to educate us.
On the other hand, last week I got a cancer diagnosis (please, no comments, this is not about me). The info on cancer education is vast- you have adverts for screening & symptoms to act fast, yes I know time is if the essence but not the point I make. Mine is totally curable & I caught it literally with 1st symptom. I have been given a rediculous amount of information on the day (most of which I don't want to know) by a certain cancer charity via specialist nurse- I have 2 specialist nurses, given direct line & emergency number. This time next year I'll be fine- HwP won't be. I definitely think education on symptoms, what PD is and info booklet on diagnosis with what, how etc when & where to get medical help, access contacts to specialist nurses/ emergency and details of charities/support etc is definitely needed. I'd be up for helping in terms of patient experience on this.
Yes of course you should.
It’s a terrible idea. Any charter would be like the American constitution, needing amendments to keep up with changes in the real world. You’ll find yourself metaphorically committed to the right to carry automatic weapons while everyone has already agreed that the rule of law is a better option than raising local militia or anything from the Wild West. My analogy is deliberately unsustainable, as would be any charter. Please stick to entertaining and informing rather than being another pressure group. Happy Christmas.
I think another issue is raising awareness, my sister had Parkinson's and she had similar problems to the ones mentioned here. As you are all people with a high profile, your views would be listened to, TV and media campaigns etc. I love the podcast and would like to wish you all a very Happy Christmas and a healthy New Year, and keep up the positive attitudes!.
https://email.bt.com/mail23/index-rui.jsp?v=MX_2.32.0#:~:text=All%20About%20Friends,the%20actual%20performance
Great that you are focusing on the psychological side of the condition, we at Friends of Parkies have a membership of over 80 see our website at info@friendsofparkies.co.uk a Parkinsons support group charity. Best Regards, Phil Bowen Secretary.
Excellent idea, but do we need to do it? Or should we support campaigns that already exist?
For example: https://www.parkinsons.org.uk/get-involved/campaigning-change as well as (not least) this: https://www.parkinsons.org.uk/get-involved/parkinsons-uk-parliament Government information about this specialist government group can be found at https://publications.parliament.uk/pa/cm/cmallparty/231213/parkinsons.htm
The USA now have official government support: Michael J Fox’s campaign organisation, the USA has just passed a new Act: More info at https://wexton.house.gov/news/documentsingle.aspx?DocumentID=886#:~:text=The%20National%20Plan%20to%20End%20Parkinson's%20Act%20would%20bring%20key,progressive%20supranuclear%20palsy%20(PSP).
And there’s also https://endingpd.org/#press-3 which is an international campaign, and also in America: https://www.pdavengers.com/
Do we need to re-invent the wheel?
Pam Archer (no relation to Paul)