Raise awareness and fund research into Diffuse Intrinsic Pontine Glioma (DIPG)

Diffuse Intrinsic Pontine Glioma (DIPG) affects 30-40 children (sometimes adults too) in the UK each year. Median survival is just 9 months. Radiotherapy, which is palliative, has been the only treatment for decades. More must be done to fund research into this disease.

May 17th has been recognised in other countries as Diffuse Intrinsic Pontine Glioma (DIPG) Awareness Day. The UK Government and Parliament should consider using this day to raise awareness of DIPG.

DIPG is an aggressive, and hard-to-treat childhood brain tumour. It is a truly heart-breaking burden for any family to bear. Research is crucial in order to make more progress.

Improving early diagnosis of all cancer is a priority for this Government and we are aware that diagnosis of brain tumours can present certain challenges in general practice and as such we very much welcome the work of HeadSmart to increase awareness of symptoms that might be brain cancer. As well as making the NHS in England aware of the benefits of HeadSmart we have highlighted the values of it with Directors of Public Health, health visitors and school nurses, to encourage their use by professionals in signposting to specialist advice if needed.

In May 2018 the Government announced £40 million over five years for brain tumour research as part of the Tessa Jowell Brain Cancer Mission. This includes funding for childhood brain tumour research.

Funding will be invested through the National Institute for Health Research (NIHR) to support a wide range of research from early translation (experimental medicine), through clinical, and on to applied health and care research. In essence this will support the translation of laboratory discoveries into treatments and better care for patients, including children.

We are relying on researchers to submit high-quality research proposals in this very difficult area. To encourage such applications we have released a NIHR Highlight Notice on brain tumour research asking research teams to submit collaborative applications building on recent initiatives and investments. The highlight notice appears to have led to an increase in applications and these are now being considered.

We are also working closely with research funding partners such as Cancer Research UK, the Medical Research Council, and brain tumour charities, who fund research into new scientific discoveries. We stand ready to translate these new discoveries as quickly as possible into new treatments and diagnostics for patients via the NIHR.

We are working closely with our research funding partners, and other stakeholders, via the Tessa Jowell Brain Cancer Mission, which will meet several of Dame Tessa’s campaign requests to improve research and care for adults and children with brain cancer.

Department of Health and Social Care.

This is a revised response. The Petitions Committee requested a response which more directly addressed the request of the petition. You can find the original response towards the bottom of the petition page (https://petition.parliament.uk/petitions/239638)