To receive a presentation by Heather Othick, Chair of Trustees, Ellie’s Fund Brain Tumour Trust
Minutes:
The Committee received a presentation by Heather Othick, Chair of Trustees of Ellie’s Fund on the background and work of the Fund, and the issues surrounding brain tumours in children. Mrs Othick began by relating her daughter, Ellie’s story: after an initial diagnosis of a malignant brain tumour when she was eleven in 2007, Ellie defied doctors’ expectations to live another three years, undergoing treatment (the course of radiotherapy at Leeds General Infirmary entailed a 140 mile round trip to Leeds every week day for six weeks), but also repaying the generosity shown to her and her family by local people, by forming the Ellie’s Fund Brain Tumour Trust Youth Committee which in two years raised over £10,000 for the benefit of five charities. Even though her condition deteriorated, the fundraising efforts continued until shortly before she died. Mrs Othick informed the Committee that some 16,000 new brain tumour patients were diagnosed each year, and, as Ellie, 86% succumbed to their tumour within five years of diagnosis. Ellie was fortunate in that she was diagnosed quickly which made for a better quality of life than some in her remaining years, and she lived six times longer than was expected. However, the diagnosis and subsequent treatment had a profound impact on Ellie and her family’s lives. The farther away from hospital the patient lived, the less help there was available. The Othick family received emotional support from the Macmillan paediatric nurse, but this did not help with the day to day practicalities of running a household, looking after Ellie’s siblings, and holding down a job. Ellie’s legacy was that in September 2010, Ellie’s Fund registered as Ellie’s Fund Brain Tumour Trust which had recently passed the £100,000 fundraising mark. Members were informed that the Trust provided grants to support children with a brain tumour and their families across Yorkshire and Humberside to spend on whatever they needed, and so help alleviate the financial pressures many families suffered following diagnosis. The Trust also worked with charities across Yorkshire to raise money for brain tumour research; since despite the prevalence of the disease, less than 1% of cancer research funds were spent on brain tumours. Mrs Othick urged Members to promote the current Government e-petition calling for an early day motion in the House of Commons to discuss the poor level of funding for brain tumour research. The Chairman commended Mrs Othick’s moving and powerful presentation and opened up the topic for discussion. Members congratulated Mrs Othick and the Trust on their achievements and pledged to promote their work and e-petition, noting that some 80,000 signatures were still required for the petition to succeed and the deadline was 25 June. Mrs Othick also referred to the All-Party Parliamentary Group for Brain Tumours (chaired by James Arbuthnot MP) which worked to raise awareness of the issues facing the brain tumour community in order to improve research, diagnosis, information, support, treatment and care outcomes. The Deputy Chief Executive, Hilary Jones referred to the Council’s many communication channels which could be used to raise awareness about this matter such as the website, Customer First centres, but also cascading information to town and parish councils in the Borough. The Chairman suggested that the Council could make representations at a national level, perhaps through the Local Government Association, or through the All-Party Parliamentary Group. The Council’s Sports Development Officer suggested that the annual Race for Life event in July be used to promote the Ellie’s Fund Brain Tumour Trust. Mrs Jones proposed a meeting with Mrs Othick to discuss the available options and to agree a way forward, which the Chairman and Committee endorsed. The Chairman thanked Mrs Othick for her presentation and for all the contributions to the debate.
RESOLVED that:
(i) the presentation be received; and
(ii) the actions agreed at the proposed meeting be reported back to Members of the Committee.