My wife suffers from Parkinsons Disease having been diagnosed 11 years ago.
I have written to Justin Tomplinson my MP in his capacity as Minister of State for Disabled People, Work and Health in the hope that he can explain what the current position is in respect of funding for research into this insidious disease.
My wife’s condition inexorably worsens and I believe the general public’s knowledge of the disease’s symptoms to be poor but more importantly I believe it to be a forgotten, Cinderella illness, with an extremely low profile in comparison with other conditions which, as a consequence, is overlooked in terms of funding into research to find a cure or, as a bare minimum, halt its progression.
So I’ve asked how much government funding does it attract, what support is there for the charity, Parkinson’s UK, and what tangible actions is he actually undertaking in your current capacity
Can i suggest that others follow my lead in order that the condition receives a higher profile and of course more funding into research.
Would be interested in hearing also from Parkinsons UK CEO as to what the charity are doing and what progress is being made, if any, with finding a cure and halting its progression. Admin please make sure he sees this e mail please.
I totally agree with you about Parkinson’s being a forgotten / ignored condition. Genuine public understanding is sadly lacking and we would benefit from a campaign purely aimed at raising awareness but unfortunately, most campaigns seem to focus on raising money as their primary concern which limits their effectiveness in terms of raising awareness.
Research is important but bearing in mind that research will not yield results for a significant amount of years, I think a wider issue is what resources the NHS is dedicating towards supporting people with Parkinson’s in any way? There seems to be a complete over reliance on friends and family to fill the ever-increasing gaps in care irrespective of the wishes of the person with Parkinson’s or their friends / family. I would like to think I was deserving of care and knowledgeable medical treatment and that any support provided by friends or family or charities was in addition to this - not a replacement for it.
I hear so many horror stories now such as people waiting to be diagnosed by a neurologist and just being told that they have PD by a GP with no support or medication being offered until they get an appointment, which they are being advised will be ‘a long time’ in the future.
In my area, the specialist nursing service has apparently been told by NHS managers to reduce it’s caseload by at least one third and this is supported by the amount of people I know who have received a letter to say that they have been removed from the caseload.
I have to wonder if there is any attempt to work towards the NICE guidelines or if the NHS and it’s various partner organisations have effectively decided that there are more deserving cases than people with Parkinson’s for NHS resources. I have tried to find out the priorities in my local area but there is no transparency in terms of services whatsoever.
I wish you luck in getting a meaningful answer to your query. Jx
I’ve passed your comment onto our research team for more information on the progress that we are making with our research and I’ll keep you posted on their response.
In the meantime, you can always visit the Parkinson’s UK website for more information on the research that we’re doing here and also our research blog, here.
Apologies for the delay in getting back to you on this. Further to my email to my colleague in the research team, they have provided the following information.
We are the largest charitable funder for Parkinson’s research in Europe, and we are dedicated to raising awareness to Parkinson’s. You can read more about our mission as a charity here: Our vision, mission and values | Parkinson's UK.
Research has come a long way over the last 50 years but at this moment nothing can slow or stop Parkinson’s. We have documented the main achievements on our website here: www.parkinsons.org.uk/research/our-research-achievements-so-far. We continue to fund different types of research from clinical trials to drug discovery, through our research grants projects and you can read more about those that are currently being funded here: www.parkinsons.org.uk/research/our-research-projects.
We also work with government departments and bodies to try and get support for our work, including research. However, we believe the Government could fund more research into finding better treatments and a cure and we’re scoping out a campaign to urge them to do this - we hope to share this next year.
If you have any specific research questions then please get in touch with our team at [email protected] and we will be happy to chat to you.
Sorry to hijack this thread but it is relevant to the discussion. Can I ask what Parkinsons UK are doing on two issues that effect us that are working age
Prescription charges
A person with lifelong chronic degenerative disease shouldn’t be having to pay prescription charges
PD database
No one knows how many people with YOPD there are in the UK as there is no central database for this to be logged. If we can ensure that every neurologist records this data then it would help with funding and research.
We completely agree with on your stance about prescription charges, we believe that people with Parkinson’s in England who work have to pay for their prescriptions. We don’t believe this is right or fair - so we’re campaigning for change. Please visit our website to for information on what we’re doing to campaign for change here: Prescription charges | Parkinson's UK
With regard to you second point, I would imagine there would be GDPR implications with having a PD database, however, I have contacted my colleague for information on this and will revert back to you with a response as soon as soon I can.
Regarding the database it could be done GDPR compliant, all that would be needed is age, sex etc and done internally in the NHS. I can imagine it would be very helpful for funding and research. There is a database for cancer diagnosis in the UK so something similar for Parkinson’s would be something worth looking at.
Thanks for that link on your prescription charges campaign, I’ll be writing to my GP using the guide you’ve provided!
Just a little more information on the database, the incidence statistics produced by Parkinson’s UK every few years will give a reasonably good estimate of the numbers of individuals with young onset Parkinson’s since this does look at GP records but not every GP is linked up to that yet.
Even a register would not be able to give you that information since these are generally voluntary. We have considered them before but they are very costly and there is no perfect way of setting them up and there have been some disasters with some other charity-led registers.
Hence, we have concluded that for the present time we would prefer to fund direct medical research rather than fund a register.
