Parents campaigning for greater investment in brain tumour research have welcomed a landmark debate in the House of Commons and the launch of a new research centre.
Yasmin Stannard and husband Khuram Liaquat lost their eldest daughter Amani to a brain tumour in February 2022, aged 23.
For 22 months, the much-loved masters student and first-class honours law graduate from Luton, Bedfordshire, courageously fought glioblastoma (GBM), which has a devastatingly short prognosis of just 12 to 18 months.
Amani’s family even resorted to crowdfunding to enable them to source life-prolonging treatment from Germany after NHS standard of care failed to stop the growth of her tumour.
Despite her declining health, and the knowledge that change would come too late for her, Amani was relentless in campaigning for charity Brain Tumour Research. Her parents continue to do this in her name.
On Thursday (9 March), Amani’s tragic story and that of other families whose lives have been struck by brain tumours, were mentioned during a landmark debate on brain tumour research funding in the main chamber of the House of Commons.
It followed the All-Party Parliamentary Group on Brain Tumours’ publication on the eve of Brain Tumour Awareness Month (28 February) of a Pathway to a Cure – breaking down the barriers Inquiry Report, led by Brain Tumour Research which provides the secretariat.
The report calls for wide-ranging changes to be made in how research into brain tumours is funded and calls out the current funding system as unfit for purpose.
It claims patients and families continue to be let down despite the promise of millions of pounds of investment which has not materialised and raises issues in the treatment of terminally ill children denied access to last resort clinical trials despite their parents’ wishes.
Luton North MP Sarah Owen spoke during the debate. She had met with Yasmin and Khuram a week earlier and shared Amani’s tragic story in the House.
She added: “Amani’s story and her parents’ determination to honour her legacy cannot fail to move us. However, while the fundraising efforts of that family and every family like them are massive achievements individually, they are a drop in the ocean compared with what we know is needed to tackle brain tumours effectively.
“We are all aware of the Government funding promise made in May 2018 – a total of £40 million made available by the National Institute for Health and Care Research – yet the recent report by the APPG on brain tumours found that, as of January 2023, just £15 million had been awarded from that pot, £6 million of which was not easily identifiable as relevant to brain tumours, as we have heard.
“When I spoke to Khuram and Yasmin, their biggest concern was that the funding that is so desperately needed has not materialised, despite the promises. We know that investment in research drives survival rates.
“As Khuram and Yasmin pointed out, the development and deployment of the COVID-19 vaccine is a clear example that breakthroughs can happen in a very short time when funding is available and the political will is there.”
She also received a commitment from the Health Minister Will Quince that he would meet with Khuram and Yasmin “to hear from them directly about the impact that brain tumours have had on their family and how the Government can deliver change to ensure that other families in their position do not have to suffer such a tragedy”.
Yasmin said: “Amani passed away last year believing the Government didn’t deem her life worthy of investment or saving. She campaigned tirelessly throughout her illness in the hope of a better future for other brain tumour patients; she knew it was too late for herself.
“To hear our MP address parliament with her emotional and heartfelt speech made us feel like Amani’s voice was finally being heard. We strive as a family now in her memory and to keep her fight alive, but our efforts are fruitless without political backing. I hope last week’s debate is the start of the change that is needed for brain tumour research and welcome the opportunity to meet with the Health Minister to discuss this matter further.”
She has welcomed further news of a fourth Brain Tumour Research Centre of Excellence, with a £2.5 million grant being awarded to The Institute of Cancer Research (ICR).
Located in Sutton, Surrey, the new Centre has ambitious plans to identify new treatments for high-grade glioma brain tumours – which include those previously known as brain stem glioma and diffuse intrinsic pontine glioma (DIPG) – in children and young adults.
Yasmin said: “It’s really exciting to hear about a dedicated Centre focusing on finding a cure for the deadliest of all childhood cancers, which includes the type of tumour that robbed us of a future with our daughter. It’s just a shame Amani isn’t here to see it.”
Dr Karen Noble, director of research, policy and innovation at Brain Tumour Research, said: “The aim is this work will lead to trials within the next five years so we can give real hope to families in the future. The current situation means that people, already facing the most distressing circumstances, often have no option but to search for and fund trials abroad with all the expense, upheaval and uncertainly that brings.
“It’s crucial that attention is focused on this most deadly of childhood cancers. We’re grateful to loyal supporters like Khuram and Yasmin whose commitment and hard work has made this milestone possible, but we need the Government to step up and not rely so much on investment from charities.”
Brain tumours kill more children than leukaemia and any other cancer yet, historically, just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research funds sustainable research at dedicated centres in the UK. It also campaigns for the Government and the larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure. The charity is the driving force behind the call for a national annual spend of £35 million in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia and is also campaigning for greater repurposing of drugs.
To find out more about Brain Tumour Research, visit here.
