Discussing research at the House of Commons

Yesterday I was invited to attend an All Party Parliamentary Group meeting on Medical Research at the House of Commons by Katherine Mayes (Policy Officer – Association of Medical Research Charities)

The title of the meeting was:
‘Transforming the NHS into a Research Powerhouse’. The speakers were –

• Professor Dame Sally Davies, Chief Medical Officer and Chief Scientific Adviser to the Department of Health (SD)
• Professor Peter Johnson, Chief Clinician at Cancer Research UK (PJ)
• Professor Jonathon Montgomery, Chair of the Health Research Authority (JM)
• Dr Claire Morgan, Research Delivery Director, National Institute for Health Research Clinical Research Network (CM)

Liz McInnes MP, Chair of the APPG on Medical Research (LM) was chairing the meeting.

Katherine also said I’d be allowed to ask a question……😎

Bizarrely, I had a conversation with the lovely Claire Gibbs from Twitter’s #whywedoresearch fame and she casually asked ‘you’re not by any chance going to the House of Commons next Wednesday’………so it was fabulous to meet up with someone I knew as these things can be very intimidating.

The meeting was at 08:30 so they’d kindly put me up in a hotel the night before just across the river from the Houses of Parliament. I’d been there in the summer with Piers Kotting so vaguely knew where I was going but Katherine had kindly provided a map with the detail of how to get in, which was so useful.

There was about 50-60 attendees including MPs, Peers, CEO’s of various charities, 4 patients, people from NHS trust hospitals and R&D directors. So a real variety of people!

Claire met me in the grand hall so we immediately took photos – funny how I never see signs that say ‘No photography allowed…………….’:)

Early morning quiet of Westminster
Early morning quiet of Westminster

The room was set out with many round tables so me and Claire settled in seats so we could see everything going on.

Many people came up and said hello – it’s always so sad that I don’t remember meeting most before but they never seem to mind.

Professor Dame Sally Davies was the first to address the meeting. – Chief medical Officer. National Institute for Health Research (NIHR) is 10 years old next year.
It was set up to be the research arm of the NHS and was meant to be a slick system to support research to make it easy for patients to take part and clinicians to do research. It was set up in response to Margaret Thatcher’s separating purchasing provider in her time as prime minister (didn’t know that!) It’s there to provide an Integrated health research system.

She said that the current government does not want to cut research but we won’t know until November 25th, when an announcement is due to be made as to the extent of any cuts if any 😱.

Professor Peter Johnson spoke next ( Chief Clinician at Cancer Research UK) he was there to speak about the excess treatment costs that are so often associated with research and the impact this may have on trials. It was in the news today about the advantage of early diagnosis of cancer. He spoke of the increasing pressures on the NHS and the impact these pressures have on the ability of Trusts to release staff to be involved in research. He emphasised the integral nature of research – it is not an optional extra – it is core business and should be seen as that – (totally agree on that)

“Every patient should be enabled to take part in research should they wish to.”

He pointed out that NHS England hasn’t taken the initiative to support research – sometimes taking part in research means extra costs (extra scans, more expensive drugs during trial. The ability to pay is something which falls to the CCG but they’re lacking in guidance as to how to do this. So you end up having a separate conversation in each CCG. There’s a lack of guidance from NHS England which leads to problems. In Wessex 4.5pence per population has been put aside – NHS England has to recognise that a consistent system to fund extra costs has to be in place.
(I hadn’t realised that NHS England is so unsupportive of research and are causing problems in so many areas!!)
There was then a Q&A interlude and it was my question first. I asked:

“How can we bring clinical and social research together to provide a more holistic approach to treatments”

Dame Sally answered the question first but it wasn’t the response I’d hoped for.
She seemed to imply that this was a difficult proposition, as industry, who fund lots of research, wouldn’t see social research as lucrative; however I was then very pleased when Professor Peter Johnson from the panel – Chief Clinician from Cancer Research UK – backed me up by saying: ” it’s becoming more important to me as we need to look at ways of preventing disease happening in the first place. we need to more look at prevention indicators so more and more there is a need to look at social interventions and I’m sure we will see more emphasis of this happening in the very near future”. There was much support around the room for a more holistic approach so I was a happy bunny.

Me and the lovely Claire Gibbs - we couldn't resist a photo opportunity for #whywedoresearch o Twitter.......
Me and the lovely Claire Gibbs – we couldn’t resist a photo opportunity for #whywedoresearch o Twitter…….

There were a couple of more question from the floor at this first opportunity – one from the Opposition Health care minister and another from Dr Sarah Woolaston – Chair of Health select committee – but I was busy typing the response to my question to take them in…..

Dr Claire Morgan – research delivery director of NIHR was speaking next.

Dr Claire's turn to speak
Dr Claire’s turn to speak

I’d met Claire when I spoke at an NIHR event. She spoke of the great work done by the NIHR. She spoke of the need to deliver all types of research as well as just answering the questions from a clinical perspective and also the importance of patient participation.. So brownie points for Claire.

After Claire, the final speaker was Prof Jonathan Mongomery from the Health research authority – His talk was about primary care – ‘Promoting instead of protecting patients from research’ – yeh!
NHS is a fragmented organisation – some acting as gatekeepers.
There’s a need for winning people over who don’t know about research.

One question that came from a patient was around GP’s lack enthusiasm for research – how can we address this?
Dr Claire mentioned Join Dementia Research and my role as a clear example of patients taking the lead 😊. 41% are actively recruiting into clinical research – which just highlights to me the post code lottery that exists.
I think GPs simply need to advertise their support via posters and leaflets – GPs are wary that it will cause more work but if they advertised the web sites it is simply endorsing research so patients can empower themselves.

The discussion could have gone on for hours and there were far more questions than time allowed. What impressed me most was that each patient attending was given the opportunity to ask a question as a priority – none were pre planned – huge GOLD 🌟 for that fact.

At the end me and Claire from #whywedoresearch hung around to get some people to hold up her placards – we then took these on the way out:

Dr Clare Morgan, Claire Gibbs and me 😊 taking photos where we shouldn't have been .........
Dr Clare Morgan, Claire Gibbs and me 😊 taking photos where we shouldn’t have been ………

A great use of my time and hope to have another opportunity……….

Great Giant Poppy at Kings Cross!
Great Giant Poppy at Kings Cross!

 

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About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

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