Driving Change for the Brain Tumour Community in the UK

Driving Change for the Brain Tumour Community in the UK

 In Government Relations, Stakeholder Engagement

To drive meaningful change in health in the UK is challenging, as I am sure it is across the world. It requires a clarity of purpose and evidence, a wide range of engaged stakeholders and unquestionable commitment—a ‘why?’ If there is a need to change health-related policy or funding, then a critical stakeholder is the government.

How though can a commitment, often stemming from personal experience, reach such heights? One such opportunity in the UK is the All Party Parliamentary Group (APPG) system.

What is an APPG?

Earlier this month I attended an APPG on Brain Tumours. APPGs exist on an impressive range of topics from climate change to hunger, from autism to choice at the end of life. APPGs are informal cross-political party groups that have no official status within Parliament. They are run by and for Members of the Commons and Lords, though many choose to involve individuals and organisations from outside Parliament in their administration and activities. For example, health APPGs often have a patient group acting as the secretariat to the group.

APPGs are opportunities for discussion, for raising issues, for seeking support. Whilst these groups have no official status, they are forums that include individuals who can support and drive change. For patients, families and communities affected by brain tumours, getting involved in APPGs is just what they are starting to do.

Goals for the APPG on Brain Tumours

Brain tumours can affect anyone at any age. In the UK, brain tumours kill more children and adults under the age of 40 than any other cancer. Astonishingly, however, less than 2% of the £500 million invested in cancer research in the UK is allocated to brain tumours, according to the National Cancer Research Institute database.

The APPG on Brain Tumours was established in 2005 to raise awareness of the issues facing the brain tumour community to improve research, diagnosis, information, support, care, treatment and care outcomes. The opportunity was clear: to communicate with those who can drive change, seek greater funding and focus on this truly devastating and seemingly forgotten patient group.

The APPG on Brain Tumours has provided the forum to bring together critical stakeholders including politicians, research groups and funders (including Cancer Research UK), the NHS, patient advocacy groups and patients and families affected by the disease. Together, here is a group that genuinely has the power to drive change. So how did his group come about and reach this point?

History & Timeline

  • In 2004 the first-ever debate on brain tumours was held in the House of Commons and the following year the APPG on Brain Tumours was established.
  • In 2006 a second debate was held, this time with a focus on children’s brain tumours.
  • In 2009 the Brain Tumour Research advocacy group was launched in Westminster and the following year the Brain Tumour Consortium Manifesto was presented.
  • Between 2011 and 2016 an e-petition inspired by Brain Tumour Research’s ‘Invest in a Cure’ manifesto has led to a Petitions Commons Committee Enquiry and a report which condemns historic underfunding for brain tumour research.

Making Progress

Campaigning across the UK galvanised over 70 Members of Parliament to attend a Westminster Hall debate. This work resulted in George Freeman MP, then Minister for Life Sciences, announcing the formation of a Department of Health ‘Task and Finish Working Group on Brain Tumour Research’, chaired by Professor Chris Whitty, Department of Health and Social Care, Chief Scientific Adviser Health Ministers received the final report from the Task and Finish group early in 2018.

Following the publication of the report of the Task and Finish Working Group, the UK announced that brain tumour research in the UK is set to be revolutionised with £45 million in funding by the Department of Health and Social Care and Cancer Research UK. At that time, Health and Social Care Secretary Jeremy Hunt further stated:

“While survival rates for most cancers are at record levels, the prognosis for people with brain tumours has scarcely improved in over a generation…Our ambition is to deliver a big uplift in the funding of brain cancer research, while galvanising the clinical and scientific communities to explore new avenues for diagnosis and treatment in the future – it is a chance to create a genuine, step change in survival rates for one of the deadliest forms of cancer.” (CRUK Press Release, February 22, 2018)

What’s Next?

The APPG has now set up an Economic and Social Impacts Inquiry to support the on-going drive for appropriate funding across health and social care for patients and families affected by brain tumours. A call is currently in place for both personal and professional submissions. In essence, the work continues and it needs to continue if meaningful change for patients is to be achieved. Driving meaningful change requires a clarity of purpose, a bringing together and galvanising of the right stakeholders and a strength in purpose— ‘a why?’ The wide number of steps, the complex range of stakeholders to be engaged and the ever-increasing barriers to funding and policy change require a determination and focus.

I believe that it can only be the ‘why?’, relevant to all those involved, an individual’s passion and determination that drives the change. That is why I felt quite humbled when attending this APPG. I met a collection of individuals passionate about change for patients and families. They all had different experiences but whatever those experiences were, they had driven them to ignite change in others—something we should all aspire to do.