A day spent with leading researchers

I was invited to attend a workshop last Thursday at the Royal college of Physicians in London as a lay representative of Join Dementia Research – another WOW opportunity for which I’m grateful.
The workshop was attended by leading professors and specialists in the field of dementia research. The prospect was quite daunting but once we started to talk about the ‘slidy thingy’ on an IPad and they knew exactly what I was talking about, I settled down:) I also sat next to Professor Murna Downs, from the University Bradford so we were able to talk about her colleagues there, as I’ve been involved with them in the guise of Research Network volunteer for the Alzheimer’s society.
The aim of the workshops was to identify and consider new approaches to clinical research in dementia which could be taken forward by NIHR – National Institute for Health Research.

A leading researcher into cancer gave a talk on new approaches being adopted in the oncology world which was very interesting, after all, research into cancer has come on in leaps and bounds. There are quite obvious differences between the outcomes of cancer and dementia, but we have a lot to learn and a lot to gain from adopting and adapting some of their methodologies.
We took part in 2 workshops, both of which were very interesting – the language lost me some of the time – but I was able to contribute, put my point of view and was listened to. It was a fascinating day. I was privileged enough to meet some of the leading brains in dementia research and it was fascinating to see my world from their viewpoint.

The surprising outcome for me was that it highlighted 2 very concerning issues. I naively thought that there would be a close connectivity between the research community and the NHS – this doesn’t appear to be the case.. Whilst in selective areas there is a close relationship, in the majority there appears to be a very wide gap due to ethical concerns amongst GPs and NHS clinicians. The Researches described them as ‘protecting’ their patients from the research world. In my mind this is wrong – clinicians and GPs should give their patients a choice. It is not up to them whether or not a patient takes part in research. It should be the patients who are given enough information to be able to make an informed decision as to whether to volunteer.

It appears to be the classic ‘postcode lottery’ as to whether you live in an area that promotes and has research available. I personally think that the seed should be sown at the point of diagnosis or even before and regularly discussed as an option. After all, in the NHS, as someone who works there, aren’t we always talking about the importance of patient choice.

The second was the frustration that this brings both parties. The NHS has masses of data that would be valuable to researches – none more so than who has been diagnosed. I’m not saying they should ‘sell’ patient data by any means – definitely not – but, again, it should be down to patient choice. Public perception of ‘research’ seems to centre on clinical trials, but this is only one strand. Research is also ongoing into the care and prevention of dementia – how to live well with dementia. Researchers find it difficult to recruit volunteers and volunteers find it difficult to find research. This is where, hopefully, the new Join Dementia research database will succeed. Volunteers will register on the database to express their interest and researches will detail the research taking place. One can then be matched with the other and then enough information can be given to the volunteer in order to make an informed decision as to whether to take part.
A very interesting and enlightening  WOW day.

About wendy7713

On the 31st July 2014 I was diagnosed with Young Onset Dementia. 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.

3 thoughts on “A day spent with leading researchers

  1. Please could I possibly share your thoughts about people’s right to take part in studies in our next internal Trust Research newsletter as it is something that I myself have said to NHS staff on a number of occasions. The text I would like to use from your blog above is: ‘clinicians and GPs should give their patients a choice. It is not up to them whether or not a patient takes part in research. It should be the patients who are given enough information to be able to make an informed decision as to whether to volunteer. ….It appears to be the classic ‘postcode lottery’ as to whether you live in an area that promotes and has research available. I personally think that the seed should be sown at the point of diagnosis or even before and regularly discussed as an option. After all, in the NHS, as someone who works there, aren’t we always talking about the importance of patient choice.’
    By the way I have been following your blog for some time and think it is excellent – I love your positivity and the fact that you are using your experience to contribute to research, to help make changes for people with dementia and educating those of us who do not have a dementia (yet). I have sent the link to your blog to a number of people in our Trust involved in dementia care and research as I think you provide a real insight. I hope they are now following you. Very best wishes, Cathryn

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