Medical research should start and finish with the patient

Results of a recent poll suggest that the UK public is incredibly supportive of healthcare research within the NHS. These results will now be used as evidence that the developing Health and Social Care Bill should include statements about an obligation to fund and promote research within the NHS.

The results published today, state that a staggering 97% of people polled believe it is important for the NHS to support research into new treatments for patients and 92% believe it’s important for the NHS to support such research funded by charities.

990 adults were polled to find these figures, by one of the top polling agencies in the world, Ipsos MORI. They were commissioned by the Association of Medical Research Charities of which we are a member, Breast Cancer Campaign and the British Heart Foundation.

Commenting on the poll results, our director of research development, Dr Brian Dickie said that “The overwhelming support demonstrated in this poll indicates the importance that patients and public place on clinical research. Considerable advances are being made in understanding complex diseases such as motor neurone disease and the NHS will play a vital role in translating this new knowledge into better diagnostics and potential treatments. Medical research is no different from medical treatment in that it has to start and finish with the patient.”

 We’ve known for a long time that people affected by MND place research high on their priority list and one of our aims is to enable people with MND to participate in research should they so wish. In order for us to achieve this, we will need the right infrastructure available within the NHS to support healthcare research – studies that involve people such as clinical trials, biomarker studies etc.

We’re currently funding a number of healthcare studies within the NHS that involve people with MND altruistically giving blood samples, answering questionnaires and having brain scans to bring us closer to understanding the causes and developing new tools for a quicker diagnosis.

One study we’re currently funding is trying to identify a specific MND ‘fingerprint’, known as a biomarker to speed up the diagnosis of MND. The study is called Biomarkers in Oxford (BioMOx) and is led by Dr Martin Turner from the University of Oxford, from within the John Radcliffe Hospital in Oxford. People with MND play a crucial role in this project.

Speaking about his project, Dr Martin Turner said that: “My sort of research simply can’t be done in a different model, either in a test tube or in a culture dish. It has to be based in patients. We recognise that we are asking them to come and do things that don’t directly benefit them, we’re not giving them a treatment, but it helps us to find out more about the disease. I never cease to be humbled by how much time people with give and what they’ll have done towards our goal of finding better treatments.”

It is vital that the NHS continues to support healthcare research, and to ensure that diseases, such as MND are not forgotten.

The results from the poll are a clear indicator that healthcare research should lay at the heart of the NHS, and should be stated in the developing Health and Social Care Bill.

Making our voice heard

We will continue to make our voices heard to ensure that MND care and research can thrive in the future so that we can move closer to finding a better treatment, and speeding up the diagnosis of MND.

If you’re interested in reading more about our campaigning activities and want to get involved, then please visit our campaigns website : http://mndcampaigns.org

Read our press release

Read the AMRCs press release

Read about Dr Martin Turner’s Biomarker study

Natasha – incurable optimist

After being asked to write about why I am a research optimist, I tried to think about the achievements in MND research.

After attending the Care Centre directors meeting I have seen that there is not just biomedical, lab based research going on, there is also a lot of clinical research going on within our Care Centres. This type of research ensures ongoing improvements in healthcare.

This makes me feel optimistic about the ongoing care and treatments for people living with MND.

Follow our incurable optimism campaign.

Care Centre Directors Meeting

On Wednesday I attended the MND care centre directors meeting. This is where all of the care centre directors, care centre co-ordinators, our regional care development advisers (RCDA’s) and some members of the care development team at the MND Association come together from across the country  to share information and good practice.

Topics discussed included the National Strategy for MND care and research, for which the petition will be handed in at 10 Downing Street this coming Monday (21 June). The National Institute for Clinical Health and Excellence (NICE) appraisal of non-invasive ventilation was also discussed along with a presentation about the lithium trial that is currently underway in the UK. Some of the presentations were quite hard going and I found them difficult to follow as they were very technical.

A nice touch to the morning’s proceedings was the presentation made to Prof Nigel Leigh (who is retiring at the end of this month) by Brian on behalf of the MND Association. Nigel has been a key player in the world of MND care and research for many years and has recently passed on the baton of directing King’s College MND Care Centre to Prof Ammar Al-Chalabi.

After personally meeting one of the directors, I received an email the next day from him. He commented that it was nice to put a face to a name which was incidentally one of my main objectives of attending this meeting! It gave me a chance to put faces to names as some of the directors are also our grantees and members of our Biomedical Research Advisory Panel (BRAP) who I am in regular correspondence with.

All in all it was an enjoyable day and gave me an insight into some of the research that is going on within the Care Centre’s and how dedicated all the staff are to the care and treatment of people living with MND.

Symposium programme begins to take shape

Over the last month the symposium programme committee, including myself and Brian, have been busy reading the abstracts submitted for presentation at the International Symposium on ALS/MND. The meeting will be taking place in Orlando in December.

I chose to read my pile 353 abstracts in one go (apart from a further 20 late abstracts). At first glance in seemed like a real chore to concentrate on these detailed, sometimes quite technical, summaries all day. However, I really enjoyed the experience. It was exciting to learn of the lateral ways that scientists are following up on new discoveries; of how clinicians, researchers and healthcare professionals around the world are working together to support people affected by MND and manage their symptoms. Being a closet geek I loved learning about all the new laboratory and imaging techniques that are being used too. Every now and again my mind drifted and I reflected on how the research team and colleagues in the care development team of the Association had contributed to the current work and state of knowledge through our funding and influencing activities.

Tuesday, 1 June was crunch time! After Kelly, Kate and Deanna had chased and compiled the programme committee scores last week, Brian and I headed to off to a meeting with other members of the programme committee. Within approximately five hours of intense discussion, the broad outlines of the programme of talks and the shape of the poster sessions were emerging. As ever, we were optimistic about the number of talks that it will be possible to include.

Over the next week or two an exciting and coherent programme will be compiled. Already I have a mental list of ‘must see’ talks and posters for December.