Your petitions: Sue Farrington Smith's story

15 November 2016

Sue Farrington Smith is the chief executive of the charity Brain Tumour Research. She gave evidence as part of the Petitions Committee's inquiry into funding for research into brain tumours. Sue shares her experiences and what motivates her as a campaigner.

Funding for research into brain tumours

We lost my sister's little girl Alison Phelan to a brain tumour in June 2001, three weeks before her eighth birthday. We were shocked and horrified to discover how little had been invested into research into this devastating disease and to realise that we would lose her.

Ali's family and friends set up the charity Ali's Dream. We knew we couldn't influence change alone and led the coming together of many UK brain tumour charities. We launched the national charity, Brain Tumour Research, in 2009, with the support of member charity The Diana Ford Trust who changed their name.

We also knew we needed to involve the Government. I contacted my local MP John Bercow, now Speaker of the House of Commons. Like many parliamentarians we have met since, John has been incredibly supportive. Now Patron of Brain Tumour Research, John supported the launch of the All-Party Parliamentary group on Brain Tumours in 2005. Through this group, we have continued to call for the Government and larger cancer charities to invest in a cure. John also hosts regular events at Speakers' House for us.

Supporting the petition

We've always understood that to achieve real rapid change, charity funding needs to be accompanied by Government financial support and have supported several petitions to Parliament over the years. When Maria Lester approached us in 2015, a year after the death of her brother, Stephen Realf, we welcomed the opportunity to champion her cause.

We worked closely with Maria and her family to create a petition that married Stephen's story with clear demands of Ministers and Government, based on our 'Invest in a Cure' manifesto. Calling our activists and supporters into action was crucial to the success of the campaign. Maria and her family were not the only ones to feel disenfranchised we needed to help their voices be heard by politicians.

Campaigning

Brain Tumour Research supported activists to engage with their MPs on every level. Inside Parliament at PMQs, and outside with letters from constituents and clinicians writing in the media we also developed off-line and on-line activities for our supporters, building campaign momentum and awareness.

The Petition closed in February 2016 with 120,129 signatures. At one point, adding 1,000 signatures every 45 minutes. Our supporters were elated to finally have their stories heard. The charity was thrilled to have been a part of this movement which took the issue of brain tumour research right into the heart of Westminster.

Petitions Committee inquiry

This groundswell of public opinion was noticed by the Petitions Committee at an early stage and they launched an inquiry just three months after the launch of Maria's petition. The Committee's report came out in March 2016, concluding that brain tumour research funding had been "neglected by successive Governments for decades".

The petition was accepted for debate in Westminster Hall. Over 70 MPs attended and the then Life Sciences Minister, George Freeman MP, committed to set up a Task and Finish working group to examine research funding. We will play a key role in driving forward this issue through participation in the working group. The opportunity we now have to work alongside the highest levels of Government to really effect change, would not have been possible without the mobilisation of our supporters. Together we will find a cure.

Find out more

The funding for research into brain tumours inquiry was the first undertaken by the Petitions Committee. The inquiry was launched in October 2015 and the Committee heard evidence from those personally affected by the issues raised in the petition as well as medical experts and charities. The Committee published its findings in its report in March 2016. The Committee also organised a debate on the issue in April 2016.

Get involved

The Petitions Committee looks back at what your petitions have achieved in its first year as part of UK Parliament Week 2016. UK Parliament Week is a programme of events and activities that connects people with the UK Parliament.