Blog – You’re an expert, and your input matters

It has been a little while since I wrote a blog. In my defence I have been pretty busy recently.. planning the dementia research careers festival, working with brilliant colleagues to start our work with ISTAART and our new PIA to Elevate Early Career Researchers.

I’ve been encouraged to find time after hearing news that the All-Party Parliamentary Group on Dementia (APPG) is holding an inquiry into dementia research in the UK and the Government’s commitment to double dementia research funding.

I realise this may not be of much interest to those of you listening or reading from outside the UK, but here, this is big news.

To put this into content, before the 2019 General Election, the Conservative government manifesto said that they would “Save millions of people, and their families, from suffering the agony of a slow decline due to dementia. We will make finding a cure one of our Government’s biggest collective priorities – one of the ‘grand challenges’ that will define our future along with the impact of climate change or artificial intelligence. This will include doubling research funding into dementia and speeding up trials for new treatments.”

Dementia charities believe that In practice, this should mean an extra £800 million over ten years for dementia research.

The APPG on dementia is a cross-party group of MPs with an interest in dementia. It is co-chaired by the Labour MP for Oldham East and Saddleworth, Debbie Abrahams MP and Crossbench Peer, Baroness Greengross. It is run in partnership with Alzheimer’s Society, who provide administrative support and expert advice

In general the aim of the APPG is to raise awareness of dementia among MPs and to influence laws and policy, in order to improve the lives of people with dementia and their carers. They meet a few times each year, and each time they focus discussion on a specific issue, and they also conduct inquiries – and that brings me back to why I am writing this blog today.

This enquiry will examine the current state of dementia research in the UK, how this compares internationally and how the pandemic has impacted the research field. It will also consider what support the Government can give to the sector – including the realisation of their commitment to double dementia research funding to £160m per year – and how this money can be best spent to ensure that the UK is a world leader in dementia research.

That enquiry is asking for people to people to submit their thoughts on the following areas:

1. What is the current state of dementia research in the UK today, how does this compare to other medical research fields in the UK and abroad, and what areas should be prioritised for dementia research?
2. What are the experiences of dementia researchers in the UK and what can be done to ensure that dementia research remain an attractive field of research? What is the role of clinical academics in dementia research?
3. What effects does investment in medical research have on the UK economy? What are the economic opportunities of the Dementia Moonshot? What would the economic effects of addressing modifiable risk factors for dementia be?
4. How could increased funding from a ‘Dementia Moonshot’ support the field of research into prevention; cures; dementia care research; and improving the early and accurate detection of dementia? What key areas of these issues need to be addressed most urgently?
5. Why is now the time to invest in dementia research? And what are the wider opportunities that could stem from a ‘Dementia Moonshot’?
6. What has the impact of the COVID-19 pandemic been on the field of dementia research in the UK? Particularly in relation to progress in the field, funding opportunities and the careers of early career dementia researchers?
7. What are the challenges of patient participation in dementia research and how can this be addressed?

I want to make sure that as an ECR you know that you can submit information, and that your input into this process matters.

You may not think this, but you are an expert! I feel sure that you will have thoughts on almost all these things. I want to assure you, that you know your stuff, and your unique insights can help. You might think…..”oh they want senior researchers, not someone like me”… or…. “I am sure someone else will say this”….or…. “I don’t have time, this won’t make any difference”. But please, please don’t. This may not immediately change policy, but let’s look at this…

(obviously I don’t want to put words in your mouths), but as an example…under point 2, social media is full of academics highlighting what short-term funding is a barrier, how you have been unable to find funding due to the pandemic, why you are choosing to leave science – so this is your chance to let the APPG know what the problem is, and how you think it could be improve. How about under point 4, would you like to make a case for your field of study being important? Or under point 7, what challenges have you faced in recruiting and engaging people living with dementia? What has helped?

My message, don’t be shy – share your thoughts, they matter!

We all wait with baited breath to hear the important news that the government is going to deliver on this commitment. Alzheimer’s Research UK launched a petition earlier this year to push for news and delivery of the funding. The pandemic has been devastating and expensive, and we know it has also disproportionately affected people living with dementia and their carers. So please, share your expertise with the APPG, so that we can make sure this money is put to good use.

As Elon Musk once said “Rockets are cool” and in delivering this Mooshot – you are the rocket!

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