A TDD and a patient survey

5 min read
 by Hugh Adams

Politically this week has been dominated by the Conservative Party Conference in Birmingham. At a Telegraph fringe event, the Secretary of State for Business, Energy and Industrial Strategy Jacob Rees-Mogg was asked about the Government target of 2.4% R & D spending and how we reach that target. Rees-Mogg said that growth in the economy will come with proper R & D. The Government will look to unlock private capital to stimulate this sector. Former Minister of Science, George freeman, at a Science and Technology fringe event, urged the Government to address the visa situation. He stated, "You can't be a science superpower if you are stuck behind a home office visa wall." We agree with George that this country needs the best and the brightest scientists and researchers.

Many of the Health fringe events looked at ways of transforming our health system. Clive Smith, Chair of the Haemophilia Society, said that a consistent theme is the lack of knowledge and training GPs have about rare diseases and that he believes the patients often need to educate the GP on the disease, not vice versa. At the same event, Louise Fish, Chief Executive at the Genetic Alliance, said that focus on early diagnosis is the key for so many diseases but on average it can take up to 5 years to have rare diseases diagnosed. At a similar event Charlotte Augst, Chief Executive of National Voices, bemoaned how poor our current systems are at identifying future illness other than by past occurrence.

On Wednesday Brain Tumour Research held a Team Development Day (TDD). As well as being an opportunity for our expanding team to get together, and meet face to face in some cases for the first time, the real business was sharing a performance review from last year and then looking at our top-level objectives for the coming year and how the teams that make up Brain Tumour Research are to each achieve them. Make no mistake it is a team effort with all of us being interdependent on each other to achieve our targets and take us closer to our vision and our mission.

We are always inspired by our Founder and Chief Executive Sue Farrington Smith who, driven by the loss of her niece, Alison Phelan, to a brain stem glioma (DIPG) just before her eighth birthday, co-founded the charity “Ali’s Dream” after being shocked to discover the lack of awareness and chronic under-funding of research into brain tumours. Sue led the coming together of multiple charities in 2009 to launch Brain Tumour Research, facilitated by fellow member The Diana Ford Trust, with a vision to find a cure for brain tumours. Sue was awarded an MBE in the 2016 New Year’s Honours for services to brain tumour research and awareness-raising.

It isn’t just Sue with a personal connection to our cause though.

Our trustees are vital members of our team, helping to guide us closer to a cure with their unique expertise and their own reasons to take our campaign forward. So, in memory of John Fulcher, our Chairman’s husband, Diana Ford our President’s daughter and mother to three of his grandchildren, Anna Hughes our Deputy Chairman’s three-year-old daughter along with Charlie Boutwood, son of our other founding Trustee (Charlie was diagnosed at twenty months with a medulloblastoma in 1993 and is now a successful young man), our governance and strategic direction is overseen by people hugely and personally linked to brain tumours.

Dr Karen Noble joined Brain Tumour Research in February 2022 as Director of Research, Policy and Innovation, and oversees the development and implementation of our research and policy strategies. Karen lost her sister-in-law to glioblastoma in 2011. 

Andrea Abbis joined Brain Tumour Research in August 2021 and oversees our Marketing, Digital Marketing, and PR and Communications teams, working to increase the profile and reach of the charity, increase awareness, maximise engagement and inspire supporters.

Andrea’s niece Leanne was diagnosed with an acoustic neuroma tumour at the age of 23. Leanne is now 33 and doing well, but it has been a difficult time for her, and she still lives with the impacts of her diagnosis. Having seen what she has been through, Andrea wants to play her part in helping to raise the awareness of brain tumours so that the right level of support is invested, and a cure can be found.

With extensive experience in fundraising, Russell Marriot has worked in the charity sector for more than 30 years. Russell joined Brain Tumour Research in June 2022 to oversee the charity’s development and income generation as it works to increase the national investment in brain tumour research to £35 million a year. Russell also has a personal reason to join the fight to find a cure for brain tumours having lost a relative to the disease.

One thing I am often asked is whether there is a personal story behind my working for Brain Tumour Research – is there a personal connection that motivates my work? I used to say “No – that isn’t the case,” because strictly speaking it wasn’t, however, I stopped saying that very early into my time with the charity, many years ago, because there are many personal stories that motivate me and, as you have read, in our charity, I’m not alone in feeling that.

If you fundraise for us your merchandise needs are fulfilled by our team of office volunteers who all have personal reasons to support our work – for some, it is their diagnosis, for others, it is following a family member being diagnosed.

If our volunteers did not do what they do, we simply could not operate, and we are indebted to them.

In our office, my colleagues who pick up incoming calls all have personal reasons to support the charity because they will all have taken one particular phone call they will always remember. It won’t have been expected but it will have been an outpouring of despair and confusion and grief from someone who needed someone to talk to.

The PR team who tell your stories to the wider world all have stories that have haunted them, phone calls that have lasted for hours, that have left them in tears but stories that have inspired them too.

The Digital Marketing team read your Facebook and other social media posts and reply. They try and say what they can in just a few words to help, to motivate, to support and let you know ‘we are on your side’.

Our Community Fundraisers share your triumphs but cannot fail to be moved by your stories and the reasons why you are motivated to fundraise for us

The magazines we write, the leaflets we produce all reflect what we have all heard. 

Right across the charity for us this is personal, we are human, we cry, we despair, we care.

It is personal and it is a privilege and when we come together as we did on Wednesday the mood is one of determination, of persistence, tenacity and a vision to reach our individual and collective goals.

It is not about being the biggest, it is about being the best we can be and in doing that raising the game of others even if sometimes it overwhelms us both physically and mentally.

Many of my colleagues have emerged from long weekends supporting Walks of Hope and London Marathon runners but they are enthused and proud of what you, the brain tumour community do to forward the vision of improved options and outcomes. There can be no greater incentive to us than what you do to campaign and to fundraise and to raise awareness and to work with us.

It informs everything we do and this week, as always but in particular, we want to know what you think.

To help us understand the experiences and thoughts on the clinical pathway of UK brain tumour patients and their families we are conducting a survey. What do you feel about the levels of research funding? Were you or a loved one given the option to join a clinical trial? Have you thought about travelling, or actually travelled, abroad for treatment?

What are your thoughts on the UK brain tumour patient clinical journey?

This survey can be completed by patients or on behalf of patients by family members and for those of you who have sadly had family members die from this devastating disease you can complete the survey detailing the experiences of your lost loved one.

Why is it so important for us to know what you feel?

Brain Tumour Research provide the secretariat for the APPG on Brain Tumours (APPGBT) which has launched an inquiry into brain tumour research which seeks to move from ‘talk to action’ and focus on solutions rather than problems. Key areas of the inquiry’s focus will include early-stage research, novel drug delivery research and development, and clinical trials. The inquiry is provisionally titled Pathway to a cure – breaking down the barriers’ and the aim of the inquiry will be to provide clear recommendations and an action plan to address these barriers.

The inquiry is set to culminate in a written report which is planned for launch in early 2023.

Your feedback into this survey will support the development of the inquiry report

These are exciting times.

Milestones are being reached and things that twenty years ago seemed impossible now seem achievable. The move from talk to action, from sympathy to strategy is vital. The political will is there, so now is the time for the short-, medium- and long-term plan.

Brain tumours are uniquely complex and the pathway to a cure is what the APPG’s inquiry will discover and as the collective voice of the brain tumour community we can design, build and walk it together.

To do that we need to know what you think.

Click here to read and complete this important patient survey

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