Hi,
Did anyone listen to the Movers and Shakers blog this week, featuring Jeremy Paxman, Mark Mardell et al. ? They have this idea of creating a Parky (I hate that word) Charter, listing ideas of what PWP are entitled to, such as good access to neurologist, advice on diagnosis about diet, exercise, mental health, and presenting it to Government. It’s all very commendable but the NHS is lacking staff and resources to meet demand, any demand. I’ve waited a year for an ENT appointment.
I worry that such a Charter would mean a photo -op in Downing Street, a few interviews and then disappear from public consciousness. One recurring gripe the Movers and Shakers hear from listeners is the bluntness of diagnosis and the lack of any useful, holistic approach and information from the very beginning. Information and support is there but we have to find it for ourselves and not everyone has the resources or capability to do so.
I wondered if the Movers and Shakers could use their considerable clout to raise money to provide funds to make a booklet to be issued to every patient on diagnosis with clear information about diet, exercise, mental health etc.
Or - get something on tv that captures the public consciousness, raises awareness and, more powerfully than a Charter, puts pressure on government to act. We need an equivalent of Deborah James, Bowelbabe, or a series like It’s a Sin.
I dunno -these people have a voice and contacts and have done so much so far and I would hope they can do more but I’m not sure that a Parky Charter is the answer. I’m really interested to hear what others think.
Anna2
Hello Anna2
I read your post with interest. I did not hear the Movers & Shakers blog and have mixed feelings about how celebrities use their status to speak about their Parkinson’s which is not relevant here. I agree with much of what you wrote but I think one simple point has been missed. It’s all very well to speak of a Charter that lists what we should have etc but does not much of what they are suggesting reflect what Parkinson’s UK and other charities are already trying to do including various campaigns to government and having quality information available on their websites helplines etc. Are they in fact suggesting anything new - although I may have misunderstood as I did not hear the blog.
Tot
Hello Anna 2
My husband (diagnosed 10years ago) and I very much enjoy the Movers and Shakers podcasts. We have gained so much information from them and have a much a greater understanding of Parkinson’s than we ever had from his appointments with the neurologist and Parkinson’s nurse…
Like you I am not sure a charter would help but I agree an informative brochure for all newly diagnosed patients would be of great benefit.
It does seem to be a post code lottery if you get to see a neurologist and Parkinson’s nurse regularly. Pre Covid my husband alternated every six months the neurologist and the nurse but appointments are less frequent now and I have to badger for them.
Hello Farmer
Provision on information is a very peculiar thing. Whilst I do no disagree at all that good information is important and a booklet of some sort may be helpful it is far more complex an issue than at first appears. I am of course concentrating on Parkinson’s here although my comments could be applied to many life changing diagnoses.
That Parkinson’s is very individual is a frequently repeated phrase that carries a lot of truth. This individuality however can present itself even at the point of diagnosis as even a relatively cursory look at some of the introduction and personal stories category on the forum will show. For everyone who posts wanting information - often in the form of impossible to give concrete answers - there is another who is in absolute shock and not capable at that point of absorbing any information and is convinced their world has ended and yet another who may come to the forum two or three years post diagnosis only at that point can they begin to say the word Parkinson’s and apply it to themselves and another who keeps it secret for years. There are probably several other variations and not all would thank you for giving them booklet at the point of diagnosis - why would they if they cannot bring themselves to even say the word Parkinson’s.
Then there is the way the information is presented, again we are not all the same. Several years ago my local council needed to save money and decided they would produce one document for everyone - a sort of one size fits all. What this meant in reality is that the information was published to the equivalent of the lowest common denominator eg someone with learning difficulties or someone who was sruggling to read words. This was fine for some but others who did not have such problems found information in this way was patronising and insulting. Needless to say it was a short lived policy.
Who would be responsible for keeping such a booklet up to date and what about the logistics for distribution? I also come back to the point msde in my reply to Anna2 what would a Charter or even a booklet do that isn’t already covered by Parkinson’s UK and other charities. There is actually a lot of information out there - not least Dr Google - so I don’t think it is information per se that is the primary problem. I think the bigger issue is that people frequently come to the forum and other sites looking for answers; by that I mean concrete things and Parkinson’s just isn’t like that. Personally I would prefer to direct people to the Parkinson’s UK website and Helpline and similar sites.
It is my own view that if the celebrities really want to make a difference they would be better using their knowledge of the media, their contacts and so on to shout long and loud at the apppalling lack of consistency of neurological services across the country with too many not even getting the minimum as laid down in the NICE guidelines. I think it would also be useful to know if there is a difference in the level of information available where people with Parkinson’s receive the basic care in line with the NICE guidelines and those that do not A further complication is that services are not all the same set up as they are to meet local need.
I am not being critical of anyone’s comments or ideas here, indeed I myself have written more than once on the forum that information is key in giving the person with Parkinson’s some control back. I have long since thought however that the one size fits all approach does not sit well with Parkinson’s where there are so many variations on a theme depending on the individual - this can be true of information as much as any other element of the support a person with Parkinson’s may need. When it comes to information it’s the same as everything else to do with Parkinson’s. You can only move at the pace the individual is prepared to go and delivery needs to be in a form that makes sense to the individual if they are to be encouraged to use it.
Tot
Hi Tot,
You think things through meticulously and express your thoughts so articulately. I agree with all you are saying and the point about Parkinson’s individuality expressing itself even at diagnosis is a trenchant one. The Movers and Shakers are asking for PWP to email their ideas and thoughts about the proposed Charter and you would be a valuable contributor to that.
Thank you Anna2 I will give some thought to giving some feedback on the Charter as you suggest. It had not occurred to me to do that, so thank you for the suggestion.
Hello Anna2
I have had a look at the Movers & Shakers page but to be honest, I don’t want to set up yet another account at the moment. However if you wish to use some of what I have written in your own post to the M&S blog, please do. I have no problem with that at all
Tot
Thanks Anna2 but I really feel I’ve got enough on my plate at the moment. If they want to know about issues that really impact on the lives of people with Parkinson’s you might suggest they join the forum - that would give them a real insight into the difficulties so many face and who do not have the voice they do and they might also consider joining the Parkinson’s UK campaigns which will quickly show them how difficult it is to get change to happen. My dream is to see truly flexible services because that is what people with Parkinson’s need - not the same service at the same time every day - but that won’t happen in my lifetime if ever. onwards and upwards as they say. Have a lovely Christmas.
Tot
TRY LISTENING TO THE PODCASTS FIRST BEFORE COMMENTING!
These are media savvy people – they know how to hold peoples attention
the podcasts are excellent in getting information out to the general public about the affliction not just sufferers of the condition and should be applauded for that alone.
I don’t disagree with that at all Grober, I am well aware they can have an impact that many of us can’t hope to achieve but there are a great many people even if they use the internet, don’t use social media or podcasts and so on and even if they do how many of the general public will listen to a podcast on Parkinson’s unless they were in some way affected by it? It may generate an item on the news that means more will hear of it, but for most that will be that. The fact remains that getting information out to people in the right way and, importantly, at the right time is also key. I have said several times on the forum that information is key in giving people with Parkinson’s or indeed any chronic condition, some control over their decision making that many feel they lose but it is also very clear to me that one size does not fit all - as important as information is, it can be counter productive if not given in a way that suits the individual at the time they want it and the sorts of information being proposed of what we should be able to expect in terms of services etc is all very well but not helpful if you can’t even find out the name of your consultant neurologist or cannot contact him or her - which is the experience of far too many. I wasn’t particularly making reference to the podcast because as I said, I didn’t hear it, I was making more general points about the complexities of distributing information that is not as straightforward as first appears and is rarely discussed.
Well known people who have Parkinson’s are in the same boat as the rest of us. They may be media savvy as you put it, able to command a voice that is newsworthy, have the clout to be able to make documentaries about their journey with Parkinson’s and so on. All to the good, it gets Parkinson’s out there and talked about at least for a short time but that doesn’t mean others can’t comment or even be a bit critical just because of who they are. You may not agree, you don’t have to agree but that doesn’t invalidate my comments just because I didn’t listen to the original podcast any more than my not totally agreeing that podcasts get information out to the general public invalidates yours.
Tot
Hi Anna2, you mention M & S raising money “to provide funds to make a booklet to be issued to every patient on diagnosis …”. Have you seen that PUK produce a Newly Diagnosed Pack: Newly diagnosed pack – Parkinson's shop
This is something we offer all new members to our group. It may not be perfect but it’s a start. I wish the consultants had a box of them or something like them to hand out when you get the diagnosis, though.
Thanks NeilT,
Certainly, my neurologist, on diagnosis, gave me a small PUK leaflet and encouraged me to get any information from PUK and to avoid American websites.
The Movers and Shakers themselves and many of their correspondents are unhappy with simply being given a diagnosis , a prescription and left to get on with. No advice about avoiding protein, or that a fizzy vitamin C drink taken with early morning pill facilitates dispersal of dopamine. Such little pearls of wisdom are there to be found but not everyone has the time, inclination, laptop, interest to do the extensive online searching and reading required. Many PWP are elderly and online is an unfamiliar and difficult place.
The Movers and Shakers have invited experts who have given good advice and information about many aspects of Parkinson’s and it’s been equally interesting to hear the anecdotes from the M&S own personal experience. I shall listen to the last broadcast again but, as I recall, they plan to produce a Charter listing five main rights expected by PWP and presenting it to government. This thread has detoured slightly down the booklet path and my original query was to hear people’s thoughts of the Charter idea.
Hello Anna2
I have now listened to the Movers & Shakers blog (thank you Grober) but as far as I am concerned the proposed Charter says nothing new and what I said in my initial reply to your post still stands ie ‘…does not much of what they are suggesting reflect what Parkinson’s UK and other charities are already trying to do including various campaigns to government and having quality information available on their websites helplines etc. Are they in fact suggesting anything new …’ I don’t have any particular problem with a charter or any other ideas but they talk on the podcast as if this is all completely new and I don’t think it is.
You’re right things did get a bit sidetracked about the booklet although this is a key point in their discussion that all newly diagnosed should have a comprehensive booklet available on diagnosis so in a way, comments on the booklet were equally valid. My own comnments were merely to point out that dissemination of information is more complex than first appears, a point that is rarely discussed. There was widespread agreement in the podcast that a booklet should be given to all on diagnosis but no discussion at all about whether or not this is right for all simply an assumption it is what everyone wants. As I have also said in this thread information is important but it has to be the right information, delivered at the right time and in a format the individual can use.
The Charter and/or the booklet may or may not progress to actually happening and good luck to them if it does, but the discussion in many ways was quite superficial amongst a group of people in broad agreement and an unspoken assumption we all want the same thing on diagnosis. Much is made of Parkinson’s being very individual - so why should this be any different at the point of diagnosis and there are posts on the forum that show quite clearly how different responses to a Parkinson’s diagnosis can be. There are no magic answers but maybe we’re not asking the right questions
Tot
The hidden value of the movers and shakers podcast appears to me to further disseminate information about the condition to the general public in addition to sufferers thus raising its profile .Inevitably organisations set up to help Parkinson’s sufferers focus inwardly which is a vital part of their primary purpose but in order to raise awareness of the condition it’s important to get Information out to the general public.Unlike multiple sclerosis and motorneuron disease which most people are familiar with, the multifaceted nature of Parkinson’s disease appears largely unknown except to suffers and their immediate relatives. To the general public and sad to say many “healthcare professionals” PD is just “the shakes” that many old people get and they remain ignorant of the myriad of distressing symptoms many sufferers experience.If we hope to attract more funding and care facilities for the condition it is vital to get this message across to the general public in addition to those suffering from the condition. If the movers and shakers podcast can help then this is a good thing. You know what they say there’s no such thing as bad publicity.
PS Has Parkinson’s UK ever conducted a survey in the general public as to their exact knowledge of the disease and it symptoms?
I think you have misunderstood my comments so I obviously did not make myself very clear for which I apologise,
I have absolutely no problem with your comments and was not being critical of Movers & Shakers or indeed anyone else who makes attempts for Parkinson’s to be better understood by all. It is much needed. Anna 2 was asking for comment on the proposed Charter and in my personal opinion they were not suggesting anything new and my comments reflected that.
The booklet issue also became a focal point and I took the opportunity to highlight that the issue of dissemination of information, again in my view, is more complex than is generally considered or discussed.
I am not asking anyone to agree or disagree, merely trying to respond to Anna2’s request for feedback and that is what I did. It was not and is not a wholesale criticism of the Movers and Shakers or anybody else but when feedback is requested they should expect a range of views with not everyone thinking the proposals are wonderful or that the authors are beyond comment.
Hopefully this will make sense and clarify my replies
Tot
Hi
It is well over 20 years since I was diagnosed.
Little support or information was given at the time so not a new thing. Various ideas , locally, on how to improve this with booklets etc never worked.
The Parkinsons nurses frequently changed and various initiatives stalled as a result.
I found being a member of Parkinsons UK forum and another much smaller forum very supportive. We passed on “tips” which should have been given by PD nurse or neurologist like protein and medication, exercise .
The biggest thing they did was make you realise that you were not alone and somebody cared and understood . I would not have coped without them.
But also various ways of getting publicity were tried and fundraising
discussed within the group.
And what do we -prioritise research? Care for current pwp?
Do we go for a cure or slowing of disease or reversal of symptoms?
Movers and shakers have reinvigorated me .I had lost all interest in research-5 years to a cure I’ve had 4 times over.
I believe the pod cast has provided their audience with valuable information and raised awareness of Parkinson’s .
Im not sure how far they will get with a charter that actually happens as no funding likely to come from NHS .
There are different opinions on what they want but that is a good thing.
I think that they are very supportive of each other and hopefully others may be encouraged to develop a network through local PD groups or this forum for example
Please excuse rambling and my typing isn’t upto much either
Jazzz
