The truth

How many people think Parkinsons uk is an absolute con and it just employs people who think they no about Parkinsons but no absolutely nothing. What meaningful research do they actually do because from what I’ve seen it’s just absolute nonsense an help line that can’t answer questions they have to pass you on. You’d think they’d employ people with Parkinsons but no let’s employ people that don’t have a clue. How many of you have been to these Parkinsons open days they have in your town and how many of you thought what absolute waste of time. And did you ask any of the stall about what they were doing. Did you get an answer or did just get a leaflet given to you. Answer on a stamp to Parkinsons people are stupid plant pluto. Do you really believe Parkinsons uk want a cure again answer on a stamp. Just think of how many well paid people would lose there jobs. It must be like working for your local council they don’t no what there doing or talking about but they’ve got a degree so that’s ok. Makes you think about funding doesn’t it. Well if this make it on the forum I’ll be surprised but I’m taking pictures of it anyway and if it doesn’t I’m going to my local mp about. Everyone is entitled to there opinions but Parkinsons uk doesn’t allow that as I’ve had thing I’ve wrote before blocked. So if anyone reads this please give your opinion

I think this is a little unfair. Like all charities, Parkinson’s UK may not be perfect, and may even seem bureaucratic and inefficient from the outside, but I think it is very well intentioned and staffed by many who try to do their best. I am proud to have donated to them in the past.

And they do host this forum for all of us.

Why are you so angry at the world? Do you need some counselling? Have you just been diagnosed?
Does complaining make you feel good?
Doing, suggesting, working towards something constructive will make you feel much better.
Join the research panel, run 5k, learn the piano, enjoy life …

I think it’s OK to be angry sometimes. We all have PD and often it sucks. I try to be positive but sometimes I just have bad days.

What’s not OK is to take it out on Parkinson’s UK. I do find some of their resources, including this forum, useful, and I do believe they are trying to help people with PD. I may be wrong but I think what Ken is trying to say is that he gets no support - maybe if we focus on why that is, and what Parkinson’s UK might be able to help with, we can have a more constructive conversation?

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So what do they actually do except for a forum because in the 12 years I’ve been diagnosed I’m still struggling to see. And as it’s charity money. How much gets to people with Parkinsons that struggle with finances. And actually I get more out sites like theOne on Facebook life with Parkinsons and Parkinsons news today. So you think it ok to employ people going round talking about Parkinsons when they no absolutely nothing about it, and how many people with Parkinsons do they employ? If anyone would like to show me along with evidence.

I’m angry at what they do with the money when I look at some of there projects and schemes that they ask people to apply for grants for. When most are complete nonsense and don’t bring anything to Parkinsons people. So before you criticise you need to do your research. All I want is for the money go towards helping people with Parkinsons, some people need adaptions and can’t afford. How many people does it help like or people who get in financial troubles because of the medication how many people does it help there?

Probably time for the moderators to step in and answer this… I think it’s a fair question to justify where all the charitable donations go.

In the meantime, the last annual report claims a lot of good things… like £6m to research and £10.9m to support - are these in dispute?

CS3656 Annual Report and Accounts 2020_FINAL DIGITAL.pdf (parkinsons.org.uk)

Also, Ken, what specifically would you like Parkinson’s UK to do for you that they aren’t doing?

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Hi @Ken2468, :wave:t4:

Again, we really appreciate you sharing your feedback with us and as suggested on ‘Hello, I am new to the forum’ thread, you are more than welcome to share your thoughts with our feedback team.

Whilst I appreciate your frustration and how difficult it is to live with Parkinson’s, as a charity we are committed to finding a cure and improving the lives of everyone affected by Parkinson’s. Our groundbreaking research and vital services depend totally on the money the Parkinson’s UK community raises and donates.

Every pound and penny generated through donations helps to bring real breakthroughs closer for people with Parkinson’s. This includes money for our research, looking to find better treatments and a cure in years, not decades. And providing information and support to everyone with Parkinson’s.

You can find out more about what we do at Parkinson’s UK - and the impact we make on people’s lives here.
As @JF has suggested, please do take the time to read through our annual report and accounts for a more in-depth look at the work and impact we’ve achieved.

Best wishes,
Reah

It would be very hard to question the value of this forum which ,whilst moderated, offers huge support and much valued advice to so many people, and largely from those with Parkinson’s or their carers and you can’t get much better than that, even if what is offered is a signpost to resources that those people have found useful. And then there is the Helpline which from my very limited experience has been excellent.
And of course any public body has to be very careful about what advice they give, so it will always be couched in conditional , very careful terms.
Then the finances…I am probably part of the more cynical group who suspect that rather too much money that is raised goes towards running the charity itself ( any charity that is) rather than directly benefitting those it is set up for…
But it is a matter of degree…what percentage of funds raised ( and bear in mind that those raising money get the undoubted “benefit” that comes from doing whatever they do to raise that money) should go towards running costs ( salaries always being the greatest cost) and what should go toward direct services whatever those may be? No sensible person thinks that £40 buys an actual goat for some impoverished family in Africa for example, but it goes some way to funding help for such people… It is all a matter of degree. At the point that an organisation exists purely to perpetuate itself, it needs to be disbanded. I doubt very much that Parkinson’s UK fits into that category, but do not know enough about its finances to know whether money donated to it is “well” spent. But it exists and therefore keeps Parkinson’s in people’s minds, for a very small cost it sends out bulletins and research info, runs a helpline and sends out free leaflets and hosts this forum, so it is not doing nothing.

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Well I’ve been diagnosed 12 years and nothing changed except my condition, your liking if you get a good consultant that listens to you and doesn’t think he no’s better, so what as Parkinsons uk achieve in 12 years because I don’t see anything it still same stuff on the site that was on 12 years ago, hold on hold on bow it tell you exercise is good for you, but I’ve been exercising since I was 20 and you can’t excercise when your stiff. And what exactly is the support you talk about? You call support putting a few thing on a website telling your were to go to get things. It’s a joke. How many people as Parkinsons uk wrote or done a survey about the treatment people get m. Not one because it’s run by people who don’t have Parkinsons. You need to wake up reah not everyone get a good consultant or nurse and there people not seeing a consultant or nurse for years. So we’re your support there, is just a I feel sorry you now get lost. What I’d like to no also how many people does Parkinsons uk employ with Parkinsons. Names please anybody can make up a number. Answer me that one. Or are people with Parkinsons just volunteers?

Wow, that was very brave of you Ken2468. I understand and sympathise with how you feel. Life with Parkinson’s is very frustrating, which, I agree….after 11 years dx, being encouraged to excercise when it’s difficult to actually move some days is hard to swallow. I think what you are expressing is that people living with Parkinson’s need help now, good, practical help. Research is of course essential, but it isn’t and mustn’t be the only route. Real people need real help now to make their lives easier. Parkinson’s is a progressive disease, and the ‘honeymoon’ period doesn’t last for ever. Thank you for sharing how you feel, it’s important. :blush:

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Hi @Ken2468,

Whilst we encourage everyone to share their experience/journey with Parkinson’s and express their views here, please remember to be respectful when communicating with other people on the forum (myself included).

With regard to how many people we employ with Parkinson’s at the charity, we currently employ 4 people with Parkinson’s and have an additional 142 members of staff who have a connection to the cause - whether it’s a family member or friend.

We are aware there are 10,000 people with Parkinson’s who are of working-age in the UK and this is a talent pool that could greatly benefit our organisation. In recent years, we have adapted our recruitment policy to actively encourage applications from people with Parkinson’s.

We have also recently engaged with members of the Younger Parkinson’s Alliance and Astriid (Astriid.org.uk a charity helping people with long-term health issues and their carers find meaningful employment or volunteering opportunities) to help develop research to identify and build a structure that eliminates barriers.

We always work and consult with people with Parkinson’s regarding research, campaigns, policy, employment, ect. There is more information on this which you can find on our website here.. Lastly, if you’d like to be involved in future research including surveys, please join our research support network via our website here. You can also get in touch at [email protected] or call 020 7963 9398.

Best wishes,
Reah

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I hope your not saying I’ve been disrespectful as I have not been disrespectful to anyone. Wow 4 employ 4 people with Parkinsons that absolutely disgraceful. Like I said it run by people who no nothing about Parkinsons only think they do. And while the forum helps people there’s a lot of Parkinsons forums on Facebook that are better and Parkinsons new today is a lot more informative. I think it speaks for its self now you’ve said you employ only 4 people with Parkinsons. How many people does Parkinsons uk employ reah, if you wouldn’t mind letting us no please?

Who are you? What actually do you do that’s constructive? You don’t no me so don’t judge me. What I say is for the benefit of people with Parkinsons if people like me don’t question these people nothing ever gets done and we just keep going down the same road.

I/we hear you Ken. I personally do not agree with your attack/frustration with Parkinson’s U.K. if it had not been for them and their helpline my husband (who was diagnosed 11 years ago) would be stumbling following a telephone call from his GP along the lines of - Oh yes by the way you have Parkinson’s- goodbye.
Parkinson’s UK were our lifeline to information on where further to go for support. Incidentally I do not believe you have to have Parkinson’s to fully understand it’s problems. Whilst I am not inside his body I am living side by side with him and his limitations impact me too hugely.
As a Charity I believe Parkinson’s UK to be honest and open with publishing how they use the funds we all raise. My personal belief is that many, like my husband and I, support the fund raising primarily for it to go into research. Yes we need help now but that doesn’t solve the issue of finding new treatments snd cures. Our attitude is we’re living with this but if we can be part of the society that finds answers for the future we will do. We have also (both of us, as people without Parkinson’s are often also required) taken part in numerous research projects and will continue to do so whenever possible.
You mention you’re unhappy with your consultant - you are entitled to change them if you can physically do this. The first neurologist my husband saw in Sussex was an obnoxious man who having first told my husband there was nothing wrong with him on the 2nd referral from our GP back to him said ‘ Ah you - the man on a mission to find something wrong with himself’. Only after us becoming extremely forceful with him did he even examine my husband and agree to send him for a DAT scan, then the diagnosis telephone call from our GP. We refused to be seen by this neurologist again and after our own research asked our GP to refer to a London Hospital that is bench marked as a hospital of excellence in the treatment of Parkinson’s. Yes it means we have to drive and take a train, no easy feat as my husband is now wheelchair bound but it is 100% worth the effort.

As previous contributors have stated any large charity is run as a business perpetuating costs for salaries and buildings etc. Do you have suggestions of improving this situation? Parkinson’s UK also employ numerous volunteers.

I believe there are charities that will physically support Parkinson’s sufferers and others in accessing funds to undertake house alterations etc to meet their immediate needs - Does anyone know if Parkinson’s UK has a detailed list of these organisations ? Your local Borough Council should also be able to help you. Certainly I agree nothing is ever quick and easy and gaining help is exactly the same; it often feels like endlessly going round in circles and repeating yourself, I wish I knew how to change that.

I wish you well Ken and hope you’re able to find and access what you want/need. Regards Jane

Hello everyone, :wave:t4:

As I’ve mentioned before on this thread, we encourage people who are affected by Parkinson’s to share their views and experiences on the forum.

However, please remember that everyone is entitled to their opinion. Before making a post, consider that people interpret things in different ways and what may be innocent to one person could be offensive or upsetting to another. Similarly, you might disagree with something someone has posted, but that does not mean they’re wrong.

If you respond to a post you find offensive, read your response before you post it and consider whether it is reasonable or whether it will make things worse. You always have the option of reporting it to the forum team. Arguments on the forum upset other users, not just those involved.

If you haven’t done so already, please read and familiarise yourselves with our forum rules which can be found here and bear them in mind when posting comments going forward. :blue_heart:

Best wishes,
Reah

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Hi @Ken2468, :wave:t6:

Telling me I need to “wake up” isn’t very nice and could be considered disrespectful.

It’s unfortunate that you feel this way about the charity and you’re more than welcome to explore other resources and platforms that provide support for people with Parkinson’s as well as this forum.

To answer your question, we currently have 433 employees at Parkinson’s UK.

Your frustrations regarding consultants/nurses based on your own personal experience is understandable; therefore, I would strongly encourage you to contact our helpline service. Our team of advisers including Parkinson’s nurses can provide information and advice on all aspects of living with Parkinson’s and would be happy to offer you the support you need.

Please give us a call on 0808 800 0303 to get in touch.

Best wishes,
Reah

Hi Jane your wrong you have to live in the body to truly no what Parkinsons is about, you see but you don’t feel. And yes I do agree that funding needs to keep going and yes we do also need people who haven’t got Parkinsons but when a charity only employs 4 people out of 433 something is wrong in my view. And yes it is hard to find a decent consultant that’s not just from me this from a lot of people with Parkinsons but if no one ever says anything nothing ever improves and feel that not enough charity money goes to the right areas. So to me you need more people with Parkinsons input. Have been to any of these open days that Parkinsons uk have because you’ll see what I mean by total waste of money. I’m only trying to get better treatment for people with Parkinsons and if you think Parkinsons uk are for people with Parkinsons think again here’s a few jobs going sounds like money well spent to me, data governance lead( fixed for 12 months)£48,000, country director Scotland £60,000 £63,000, bilingual media communication officer £20,500, business analyst £43,000, senior business analyst £48,000, brand marketing manager £48,000, junior designer £26,000, trust officer £32,000, senior trust officer £36,000, research communications officer £33,000, research participation and engagement officer £33,000 this all sounds like money well spent to me. So with its 433 employees how much gos to Parkinsons £50

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4 out of 433 is an astonishingly small number.

I was expecting it to be close on 50%.

Thanks for asking this question.

I think you’re on a different pduk website as when I’ve reached out there’s always someone there to help .what do you want for £4 a month