Brain tumour campaigners from Luton take their daughter’s fight to Westminster

Bereaved parents, who have campaigned for change since their late daughter was diagnosed with a brain tumour, have taken their fight to Westminster.

Yasmin Stannard and Khuram Liaquat attended a meeting of the All-Party Parliamentary Group on Brain Tumours (APPGBT), for which Brain Tumour Research provides the secretariat, to share their beloved daughter’s story with MPs.

Amani, a passionate campaigner, master’s student and first-class honours law graduate from Luton, courageously fought glioblastoma (GBM) – which has a devastatingly short prognosis of just 12 to 18 months – for 22 months.

Her family even resorted to crowdfunding to source life-prolonging treatment from Germany after NHS standard of care failed to stop the growth of her tumour. Sadly though, Amani died in February 2022, aged 23.

Amani’s medical team from Mount Vernon Cancer Centre, Dr Anup Vinayan, Dr Thomas Carter and clinical nurse specialist Tanya Betts, joined Yasmin and Khuram at the APPGBT, adding their views on clinical opportunities for brain tumour patients to the dialogue of hope for future treatments.

Dr Vinayan expressed his frustration at not being able to secure trial drugs for brain tumour patients on compassionate grounds, his ONC 201 request for Amani having been refused. He said he hoped the APPGBT could assist clinicians in gaining early access in the future.

He said: “Things have moved on quite a bit for breast cancer, lung cancer and melanoma, but for brain tumours we’re still at the same point. We’re still using treatments from 2008. With Amani, we went through the standard treatment and it made no difference at all. I refrain from using the term ‘gold standard’ but it is the best treatment we have got at this point.”

He added:“With a disease like this, we’ve got to be a bit more clever and daring with treatment. What we don’t want is families working with medicines that have no evidence of working at all.”

The need to implement, as standard, the freezing of biopsy brain tissue to allow for future genomic sequencing and targeted treatments, and the need for investment in infrastructure to allow this to happen were among other issues raised.

Speaking after the meeting, Yasmin said: “We were honoured to be asked to share Amani’s story at the APPGBT. We are encouraged by the assurance given by MPs Derek Thomas and Sarah Owen that another meeting will be rescheduled in the autumn and we look forward to having the opportunity to share Amani's story with MPs.

“The meeting provided an ideal opportunity for MPs, medics and families who have lost a loved one to GBM to discuss the numerous issues and obstacles surrounding effective treatment options for brain cancer patients in the UK. We would like to thank Amani's medical team for continuing their support and becoming involved in campaigning for improvements.”

Hugh Adams, head of stakeholder relations for Brain Tumour Research, said: “The purpose of this APPGBT was to remember Amani and to discuss ways of using her legacy for change, as Yasmin and Khuram, and all of us at Brain Tumour Research, are keen to do. It was of huge benefit to have Amani’s clinicians present to discuss their experiences and hopes for the future. We’re grateful to all who attended and look forward to taking the issues raised further.

“Brain tumours kill more children and adults under the age of 40 than any other cancer, yet just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002. This has to change.”

Brain Tumour Research funds sustainable research at dedicated centres in the UK. It also campaigns for the Government and 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.

To find out more about Brain Tumour Research, visit www.braintumourresearch.org