Couple from Elmswell, near Bury St Edmunds, welcome new inquiry calling for 'urgent action' to help care for those diagnosed with a brain tumour

A Suffolk couple who lost their young son to a brain tumour have welcomed a new report demanding urgent action to help those affected by the disease.

Matthew and Nelly Crick, from Elmswell, have welcomed the report by The All-Party Parliamentary Group on Brain Tumours (APPBGT), called Pathway to a Cure – Breaking Down the Barriers.

It criticises the current funding system as 'unfit for purpose' and claims patients and families continue to be let down despite the promise of millions of pounds of investment.

The report, published on Tuesday, the eve of national Brain Tumour Awareness Month, was launched at a Westminster reception jointly hosted by Brain Tumour Research and the Tessa Jowell Brain Cancer Mission.

It raises issues in the treatment of terminally ill children denied access to last resort clinical trials despite their parents’ wishes.

It also highlights a so-called 'valley of death' in which potential new treatments discovered in the laboratory fail to reach patients because of unnecessary complexity in the way research is funded.

Nelly Crick, said: “It is another blow to our already shattered hearts to know the millions promised by the Government for research into brain tumours still hasn’t materialised.

“Harry had limited options given to him to fight his ETMR and we faced many battles along the way accessing the ones he did receive. The reason given was always that his prognosiswas so poor.

“Had the millions promised been used for research, there could have been something to cure him or to give us more time. He would have had more options, kinder treatments available to him. Harry should be turning four years old next week, instead he will always be two.

“This is just another ‘what if’ to add to the many we already live with every day. Harry deserved so much more.

"All the children that have lost their lives or are still fighting deserve so much more.”

Son, Harry, was diagnosed with a rare brain tumour, later identified as a grade four embryonal tumour with multi-layered rosettes (ETMR), in December 2020 after becoming unwell with a cold and unsteady on his feet.

Despite undergoing two craniotomies, chemotherapy and proton beam therapy in Germany, the brave toddler died in October atthe age of two.

Key recommendations of the inquiry include:

• The Government should recognise brain tumour research as a critical priority, ring fencing £110 million of current and new funding
• The research funding system has been built in silos and needs to be joined up from basic science through to clinical trials. Patients with brain tumours should have equity of access to trials of new anti-cancer drugs
• Funding bodies should ring-fence specific funding for research into childhood brain tumours where survival rates for the most aggressive tumours have remained unchanged for decades leading to frustrated families seeking costly and unproventreatment abroad

Derek Thomas MP, who chairs the APPGBT, said: “A total of £40 million in investment has been promised since 2018. This gave cause for optimism and heralded a very welcome shift in focus especially considering the historic underfunding of research into brain tumours which has received just 1 per cent of the national spend on cancer research since records began."

Sue Farrington Smith MBE, the Padbury-based chief executive of Brain Tumour Research,said: “Brain tumours are a uniquely complex disease, and we must recognise this with aunique response.

“Survival rates for brain tumour patients have remained unchanged over recent decades and, despite improvements in neurosurgical techniques, supporting care, and more refined imaging and molecular diagnostics, we are yet to see the upward trajectory of other malignant diseases such as breast cancer and leukaemia.”

Brain tumours kill more children and adults under the age of 40 than any other cancer, yet, historically, just 1 per cent 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 researchinto brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure.

To read the report in full, go to www.braintumourresearch.org/appgbt-briefing-pathway-2023.