Open letter to CEO

What are Parkinsons UK doing to heighten the awareness of the disease in the public’s consciousness? Everyday the media carries stories relating to other illnesses like cancer, dementia and alzheimer’s yet with Parkinsons just silence. The public have very little comprehension of the symptoms of the disease and until they do it is going to be very difficult to attract funding for research into a cure or at least stopping/delaying the disease’s insidious and inexorable progress.

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Hi @davech,

I hope all is well as can be.

To answer your question, we place people with Parkinson’s at the forefront of everything we do and do all that we can to raise awareness on the condition. We launched our biggest ever marketing campaign, Parkinson’s Is, which we launched on World Parkinson’s Day earlier this year, to raise awareness on Parkinson’s. As part of the campaign, we produced a series of short videos and they received 5.3 million views, the campaign featured in 525 of regional online and print newspapers including the DailyMail, The express, The Sun and The Metro.

We also featured in The express online newspaper last week to raise awareness Parkinson’s and it’s symptoms which you can read here - https://www.express.co.uk/life-style/health/1192265/parkinsons-disease-symptoms-brain-signs-nose-loss-of-smell. Additionally, our CEO, Steven Ford, recently featured on BBC Radio Kent to help raise awareness on Parkinson’s.

For more information on our campaign work, you can visit our website here - https://www.parkinsons.org.uk/get-involved/campaigning-change.

I hope you find this information helpful.

Best wishes,
Reah

I’m afraid that I can only agree with @davech. I am sorry to say that I think the reply to his question is a little too glib. Parkinson’s Is - World Parkinson’s Day launch. When was World Parkinson’s Day? Read It Here in www.express… All very well if you subscribe to that. Radio Kent. Reception in Cheshire of Radio Kent is a little on the poor side.
Whilst the efforts made by the various people may have been very good where they were applied I am afraid I can only say that that as the result of what is very limited publicity make me feel that we are forgotten behind Dementia and Alzheimer’s. A very poor 3rd.

Thanks for the response Reah

i had wanted a response from Steven Ford, CEO himself. Much of which you have referred me to seems very low key to me.

I believe there needs to be a high level nationwide campaign as it certainly feels like Parkinson’s sufferers like my wife are treated as poor relations when compared with sufferers of other conditions. The disease is not on the radar of most of the general public and knowledge/understanding of its symptoms is scant.

I think the CEO should also write a 3/6 monthly update on what is happening research wise.

My wife was diagnosed 8 years ago when her neurologist predicted a cure would be found within 5 years. That never materialised and sufferers need something to hold on to in the form of a realistic update written in layman’s terms detailing what progress is being made, if any, in finding a cure or way of halting the progress of the disease.

i would also like to know from the CEO (a) how much the government is being lobbied to better fund research and (b) understand what pressure is being brought to bear on companies like MHD in respect of their woeful record of producing and providing Sinemet in a timely manner so as not to cause further distress to its users, whose quality of life and ability to function is being jeopardised.

thanks for the support

Hi @davech,

Thanks for those great questions.

Public understanding of Parkinson’s

We share your frustration about the lack of awareness - and more specifically proper understanding of what it’s like to really live with Parkinson’s. People like yourself have shared this with us and we regularly monitor and measure public perception and understanding.

As Reah gave you a flavour of above, we run targeted marketing campaigns aimed at those who aren’t affected by Parkinson’s. Our Parkinson’s Is campaign has been running throughout the year, and has reached 4.2million people. Lots of the Parkinson’s community might not have seen it regularly, as we used our advertising spend to target those who don’t have knowledge of Parkinson’s already.

On the media side, it’s far from silence. Even though Parkinson’s affects a much smaller population than the other conditions you mentioned we have a regular drumbeat of quality media coverage about Parkinson’s throughout the year. In August [the latest media report we have], for example, there were over 500 articles about Parkinson’s in print and online press, reaching 66% of the UK adults. To give you a flavour, here’s some links from the last couple of weeks about how we’re getting Parkinson’s talked about in the media: The Independent, The Guardian and our celebrity ambassador Paul Sinha had a slot on Lorraine on ITV.

And we want to do much more of this - Getting Parkinson’s Understood is a key feature of our new 2020-24 strategy. We have bold plans to increase public understanding and motivate them to get involved. We’ll use the most cost effective way to reach people and change society - through advertising, media and PR. We also want to work through and with everyone in the Parkinson’s community. Let’s use all our networks to influence and change perceptions.

Communicating about research progress

We have a few different research communications that might be useful for you.

Have a look at our blog for weekly updates directly from our research team on the latest research developments. You can also join our Research Support Network to get email updates on the latest news and opportunities to get involved in trials. Finally, you can also sign up for free to our twice-annual research magazine, Progress, for updates.

Lobbying government

We work with other medical research charities through the Association of Medical Research Charities to lobby the government for adequate funding for medical research and ensure there is the right environment in the NHS to conduct research.

We also lobby government to fund Parkinson’s-specific research projects and initiatives. In September, the government announced £30million to fund brand new therapies and technologies that target genetic mutations to treat Parkinson’s and other conditions.

We also work with pharmaceutical companies to encourage them to invest in Parkinson’s. Our Critical Path for Parkinson’s project is aimed at making it easier for pharmaceutical companies to take forward Parkinson’s trials as opposed to trials in other conditions,

MSD and Sinemet

Our policy and campaigns team have been engaging with MSD and encouraging them to make alternative arrangements to meet demand, since August 2018. We’ve been keeping our website up to date with the latest from MSD.

We’ve been speaking with the Department of Health and Social Care about the supply problems, and encouraged them to exert pressure on MSD. While we recognise that people on Sinemet should get their branded product, there are generic alternatives (co-careldopa) in supply, however we know that these don’t always control people’s symptoms in the same way. We will continue to work with and exert pressure on MSD and any other relevant pharmaceutical companies to ensure they have the necessary stock in place to meet demand.

I hope that these comments are helpful.

Best wishes,
Steve Ford

Parkinsons UK seems to have flairs of marketing push at different times of the year - wear something silly on your head etc. I feel too there is not enough, indeed can there ever be enough public awareness. It is still so very lacking and find it alarming when speaking to a GP recently regarding early warning signs of Parkinson’s that she looked on with query and said ‘Idon’t detect any tremor’ and is loss of smell an early sign of Parkinson’s. If a GP is this limited in her knowledge then there is little hope for people generally. The cynic in me thinks GPs do not want people presenting with early Parkinsons potential symptoms because of their lack of being able to offer much help. Then we get onto once referred being able to be seen by a neurologist specialising in Parkinsons and a Parkinsons nurse how many have to wait and wait for these appointments?
However a national campaign along the lines of that promoted for stroke would at least raise awareness/knowledge and hopefully funds.

Oh…how I agree with these comments…GP said “I dont really know nything about PD” that was 8 years ago. I worked with people with PD for many years so could reconise my husbands symptons. 5 years later when he shook like a jelly at times and his mouth could shake without talking…and after I insisted he saw a neurologist…he was diagnosed after 10 minutes with a neurologist!
Fast forward 3 years the support is a sham seen by consultant 3 times and P.Nurse twice…I too feel that people with PD are the underdogs when it comes to support…the public have little understanding of how it affects people…
Our friends of over 33 years remarked to me only last week that they thought my husband had been drinking at 11.30am…because he was slurring his words at times and drooling and they found it hard to understand him as his voice was really quiet…they thought PD was just a shaking disease…
This is the level of knowledge and understanding he faces every day…

I now live in sheltered accomodation as a result of problems related to PD. My previous GP practice was excellent - I was a patient there for abot 12 years,

Iworked in the NHS as a nurse. therapist and hurse tutor for many years and so have met and worked with many doctors, several becomong friends.

I am aware of the enormous pressures on GP practice, but my new GP practice is APPALLING. The only reason that I am registeed there is because of my PD related geographical move. The little contact I have had over the two and a half years as a patient there has been dreadful, with PD not even acknowledged, never mind the obstructive and distressing problems related to medication changes for PD requiring repeated intervention at PD nurse and consultant level.

It’s NOT about "increasing awareness regarding PD at Gp level " - at least not in this case.

Just face it, as in all walks of life, some doctors are good, most are ok, some are DREADFUL.

I shall be changing pracice soon - further upheaval I coul do without but which, afte discussion with my very supportive eldrr daughter, seems necessary.

Take care everyone

cled

I think I should have entitled this post as something like " Not all Doctors are good doctors" or something similar

Hi everyone,

We often hear from people living with Parkinson’s that their GP has little or no knowledge around Parkinson’s. It’s a huge challenge to enable GPs, who see relatively few people affected, to refer suspected Parkinson’s for specialist diagnosis. There’s no quick fix for this but we’re trying to use every opportunity to make a difference.

Through collaboration with GP organisations, we’ve met with GPs to find out they need to understand to provide the best care to people with Parkinson’s. And these are some of the steps we’ve taken to improve things:

  • We’ve worked with the British Medical Journal Online to develop online learning on Parkinson’s
  • We’ve worked with the company that provides the online information system to many GPs practices across the UK, to make sure GPs have robust and clear information on Parkinson’s and next steps for care.
  • We’ve produced an educational resource to support GPs with a suspected Parkinson’s diagnosis, particularly focusing on young onset Parkinson’s.
  • We’ve influenced the NICE guidelines for Parkinson’s (the guidelines all NHS staff use to find out best practice to identify and treat Parkinson’s) so that it’s clearer how GPs identify and refer neurological conditions for diagnosis.

I hope this answers your questions and helps with your concerns.

Best wishes,
Steve

Thanks for your comprehensive response Steve

Sadly the fact remains that the profile of the disease and symptoms does not enjoy the same role as cancer or dementia.

i have written to the PM and Matt Hancock in his capacity as Secretary of State for Health and Social Care asking them what the government is doing about funding for research into finding a cure or at least halting the insidious progress of the disease. needles to say I have not had a response to date which just about sums up how important they believe the issue to be and their concern for those who suffer from it

Is it true that Bojo’s mother is a pwp?

I feel that the big underlying problem is that there is still an atmosphere of shame around Parkinsons. That is passsing with dementia because so many are affected by it. One aspect of campaigning that worries me, is unrealistic targets being set. 'We are working towards a cure…well, yes, in a thousand years maybe, meantime some better treatments with fewer side effects would be welcome, or even a reliable supply of the dodgy stuff currently available.

In February last year, I was diagnosed of PARKINSON DISEASE. I started out taking only Azilect, then Mirapex and sinemet as the disease progressed but didn’t help much. In July, I started on PARKINSON DISEASE TREATMENT PROTOCOL from Herbal Health Point (ww w. herbalhealthpoint. c om). One month into the treatment, I made a significant recovery. After I completed the recommended treatment, almost all my symptoms were gone, wonderful improvement with my movement and tremors .