UK sleepwalking into Parkinson’s pandemic

9 months ago

News
CP news

Cure Parkinson’s has published the results from our recent survey revealing an alarming lack of knowledge about the world’s fastest growing neurological condition. The World Health Organisation (WHO) recently stated that disability and death due to Parkinson’s are increasing faster than for any other neurological disorder[1.]

Titled ‘Change The Future: Preventing a Parkinson’s Pandemic’, the report’s findings include:

1 in 3 adults in the UK know someone with Parkinson’s
For every person diagnosed with the disease, over 100 people are in some way touched by it

But

Less than a fifth (17%) are aware of the impending pandemic, highlighted by many academics[2] and the WHO
Most adults (51%) believe Alzheimer’s is the fastest growing neurological condition
Only two of more than 40 symptoms of Parkinson’s are widely recognised by the British public – shaking (69%) and problems with balance (52%)

This leaves a massive void in knowledge and could mean vital signs are being missed by friends and loved ones of those developing the condition. Survey results showed that 45% of UK adults believe the government should be doing more to fund the search for a cure.

We are dedicated to finding a cure for Parkinson’s and are calling for urgent action including the immediate allocation of £90m from central government to find a cure; more information and awareness to get more people joining trials and an urgent recruitment drive to get more scientists working towards finding a cure.

If the search for a cure isn’t accelerated the impact on the NHS and economy could be crippling. The current cost of healthcare for the estimated 145,000 people living with Parkinson’s in the UK is over £728m per year rising to a total economic impact of £3.6 billion[3]. If current projections are correct of people with Parkinson’s more than doubling by 2040[2], this figure will rise to over £7.2 billion.

It’s important that we invest in Parkinson’s now. This charity and our co-funders are leading a global charge to find a cure. We have directly funded or helped facilitate funding for over £100m of clinical trials to date. But this is not enough: now it is not science but funding availability that defines urgent progress. Our research should be a wake-up call to everyone that a pandemic is coming and the only way to truly avert it is to find a cure
Will Cook, CEO, Cure Parkinson’s

The report identifies a widespread belief that the majority of people with Parkinson’s experience tremor or shaking. While this symptom is fairly common, it is not necessarily an early warning symptom. The survey results showed that the majority of symptoms remain hidden and public perception of what Parkinson’s means to those living with it is very different from the reality:

To prevent a Parkinson’s pandemic, we have four key actions that need to be undertaken with urgency:

£90m needs to be urgently allocated from central government to finding a cure. This is broken down as follows:
- £10m to be invested in screening to identify at risk populations, so that trials can be funded that look at prevention as the cure
- More people to participate in trials. Clinical trials are often delayed because of the difficulty in enrolling participants. Some research has indicated that 45% of clinical studies are held up due to it[4].
- £25m to fund grants for researchers to run those trials with the at risk groups
- £10m over five years to fund 40 more clinical research nurses so that more trials can take place
- £45m for multi-arm research which allows multiple drugs to be tested in one trial, short-cutting the search for a cure
More people to participate in trials. Clinical trials are often delayed because of the difficulty in enrolling participants. Some research has indicated that 45% of clinical studies are held up due to it[4].
Filling a recruitment gap to secure more scientists working on a cure. The House of Lords Science and Technology Committee recently concluded “clinical research is on a precipice”[5] due to a lack of resource and incentives to make clinical academia an attractive career path. Research from the Association of Medical Research Charities (AMRC) also revealed four in ten (40 per cent) charity-funded early career scientists have also considered leaving research due to funding concerns since the coronavirus hit the UK[6].
Speeding up the clinical trial process. While Cure Parkinson’s welcomes the recent announcement from the UK’s Medicines and Healthcare products Regulatory Agency (MHRA) that, with support from partners, it will make it faster and easier to gain approval and to run clinical trials in the UK, the announcement has been a long time coming. These changes must be actioned immediately brought in without further delay.