I just to say that I’ve looked at job vacancies on Parkinsons uk at looked at 14 jobs with a totalled the wages up and we’re talking £511,000 so had in another 433 jobs I’d like to see the final cost, and all you can say back is we get a forum. I give in
Lots of numbers in the Financial Statements -
I’m really sorry to hear that you think paying £4 a month is all that’s contributed towards support from Puk. £4 is a suggested amount many of us pay much more along with contributions from activities, fundraising, legacies etc. I’ve personally never been short of advice from fellow sufferers, through Puk and other platforms ……if you have pd, we are pretty much on the same road…. We should surely be coming together for support.
Hi I also pay £5 a month to save the worm parkinsons research & my brother done three peak challenge last year £2,605 so I really think me my family & friends do what we can to find q cure .MANY THANKS 
Also I have had parkinsons for 20yrs deep brain stimulation & 42 tablets a day so I know a thing or two about parkinsons disease 
I’m sorry gus, I think you misinterpreted me I am more than grateful for the contributions that people make and any charity events organised to try to make life better for everyone dealing with this horrible disease(my family and friends have also been amazing). you obviously have a wealth of experience and what I was trying to say was…… we are all on the same journey and should be sympathetic to one another whether we are behind you or ahead of you we’re all going to end up facing similar issues and problems, it’s a scary road for us all. I do take offence at comments recommending a 5k run and learning to play the piano (not your comments) offensive and unnecessary. Thank you.
No reply what a surprise. Nothing to say think before you write 
I did actually reply ??? And I thought in a civilised manner.
Of course I cannot physically feel what my husband feels and I very much wish he didn’t have to feel/experience any of it, as indeed I do for all Parkinson’s sufferers. I know one thing though my life is irrevocably changed too. I won’t go into personal details but loving/caring/living with someone who has Parkinson’s is no bundle of fun to put it mildly.
That aside my question to Parkinson’s UK would be why DO they have so few Parkinson’s sufferers working for them ? Having noted the salaried positions you highlighted Ken assuming that these would be London Salaries it made wonder about what the benefits of a London base for the Charity is ?
I have never been to a Parkinson’s U.K. Open Day and didn’t know they existed.
I’m all for you trying to get the best for people with Parkinson’s and your questions are not unwelcome and need answering. Good Luck and perhaps the post of Senior Trust officer has your name on it ?!
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Hi Jane totally understand it must be really hard on you and all partners of Parkinsons suffers, they are lucky to have you. I just think that’s charity money given by all and 433 jobs with advertised just how much actually reach’s the Parkinsons front? Because at rough guess it must be way above 5 million a year in wages. Do you honestly believe that they want the golden goose to stop laying eggs. Anybody that does isn’t living in the real world just look how many sites there is. The drugs industry, the research industry. It’s billons of £ industry who going to employ people who think they no about Parkinsons if the did. The I no nothing industry. Have a look on Parkinsons new today . And thanks for giving me that job
Dear Ken 2468 who do we appreciate? Well in my case, yes only mine, Parkinson’s Research. They have been excessively encouraging and helpful with the book I am giving royalties to PD Research. Stay polite and sincere. Yes, you have a right to your view but realise you do not speak for the majority from the responses I’ve read. Miller
Hi everyone, 
I regret to inform you that we’ve had to temporarily suspend a member from the forum due to behaviours that are in breach of the forum rules.
While the user has been suspended we’re still intending to respond to some of the questions raised where we can provide additional information.
We reserve the right to maintain the forum community in line with our rules which are designed to offer a mutually supportive environment for all. Therefore; I encourage you all, once again, to familiarise yourselves with the forum rules to prevent further suspensions going forward.
Best wishes,
Reah
I agree with you Ali_p. I have had PD For 12 years and no progress has been obviously made. Sinemet is the drug of choice for practitioners but in my case it makes me feel very unwell. It is a struggle every day and after finally getting a telephone app.with the nurse I am no nearer a solution. My consultant who I have not seen for a long time is on annual leave for the whole of January! It seems to me that if you are prepared to ‘put up and shut up’ thats all the help you are going to get. I am sure there are Parkinson’s specialists who care but finding them is very difficult. I found an excellent contact at a wedding but unfortunately the consultant recommended had retired. Imagine my disappointment. I WOULD SETTLE FOR A DAY TO DAY RELIEF FROM MY PAIN BUT HOW DO YOU GET IT!
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Hi everyone, 
As promised, I wanted to provide you with more information to some of the questions that have been raised on this thread.
At Parkinson’s UK, we have a clear commitment statement displayed on all our job adverts which is ‘We welcome applications from people from all sections of the community, irrespective of race, ethnicity, gender, age, disability, sexual orientation, religion or belief. We actively encourage people with Parkinson’s to apply’.
Our aim is to increase the number of people living with Parkinson’s in our workforce. To achieve this we consider adjustment during the selection process and will offer an interview to candidates with Parkinson’s who meet at least 50% of the selection criteria. We’ve recently partnered with Astriid, a disability charity, who can support our candidates either during the selection process or partner and support candidates if we don’t have a role that is suitable for them.
Our board of volunteer trustees sets the direction and scrutinises the work of the charity. Many of our board members have Parkinson’s or are close to people who have Parkinson’s. We also have many volunteer roles filled by people with Parkinson’s for example roles that represent in our strategic planning meetings or are a key part of our selection panels when recruiting for influencing or high profile roles.
People with Parkinson’s work with us to steer, advise and guide as we continue to develop all aspects of Parkinson’s Connect, our information and support services.
Charity money benefits people with Parkinson’s directly in many ways as everyone’s needs are different. It funds research to develop long term treatments and seek a cure, our influencing work on government policy to improve statutory services for those with Parkinson’s; we continue to fund new Parkinson’s nurse posts to get new roles established and offer service improvement grants to NHS health professionals supporting people with Parkinson’s. Our direct services offer information and support to upwards of 50,000 people per year and this number continues to grow. Additionally we fund grant schemes to support people most in need.
For more information on the work that we do along with other things that I’m sure will be on interest to you, please visit our website here.
Best wishes,
Reah
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Bring back Ken2468, he was only sharing his thoughts.
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ok. peeping hesitantly over wall, do I really want to put my head up any further? Go on, deep breath and out with it.
If you feel that pduk has done nothing for you, what have you done to improve their performance? Do you go to a local group, are you on the committee making decisions about what is on offer to members? Do you read the magazine Parkinsons, does some of the content annoy you, how about taking a turn on the editorial board? Or on the policy panel?
I was diagnosed in 2010 and I do know how bad it can get, I can understand the anger when someone says the wrong thing. I do know how bad some services are, not just because of the pandemic. But don’t blame the charity, don’t blame the individuals you meet, it goes further and higher than that.
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Oh Mosie, I have a picture of you with head just peeping over wall…
Meanwhile I am hiding beneath the bedcovers, comfy and safe. I think I’ll be as brave as you, and peep out , just for a moment, to say,
“I agree with you”, and to add, “ with limited resources, choices have to be made. Different people want different things. It needs hard work to discover the right balance .”
Back under the covers. Bye.
Hello all, I am relatively new here, having turned to Parkinson’s UK towards the end of last year when my husband’s GP suggested a neurology referral to investigate his symptoms further. I have been doing as much research as I can for the past year to prepare the right questions and grasp some understanding of the condition beyond the uneducated level I was at, and I need to speak in support of the Helpline and this Forum. I have received nothing but helpful comments and advice from people who actually seem to care. I have been put in touch with a PD nurse who took the time to help prepare for our second appointment. I have made several calls to the helpline and spoken with different advisors who have each offered constructive suggestions and compassion.
I have so far clumsily managed to navigate my way through the posts as a forum novice and have generally resided in the motorcycling section😀, but I feel this is the right time to branch out and try to give back a little by saying thank you, in light of the recent criticism. You are appreciated!
Sophie
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I am optimistic, a positive sort of fellow diagnosed with PD 2 years ago. I’ve started Tai Chi to help me. It’s a gradual stretching and not too energetic thing but it did cause some humour with the rest of the ‘normal’ attendees.
"Miller are you a Nazi?’ asked the leader.
I laughed. My left hand was erect above my head but my right hand was half way up in a Hitler salute. We all laughed.
Miller