Please note that the All-Party Parliamentary Group on Brain Tumours (APPGBT) is not currently active, due to the dissolution of Parliament for the General Election which is due to take place on 12th December 2019.
In adherence with the rules on All-Party Parliamentary Groups, whilst the House is dissolved there are no Members of Parliament and therefore the APPGBT ceases to be an All-Party Parliamentary Group.
Dependent upon the consent of Parliamentary Officers, the APPGBT will be re-established in early 2020.
In line with Parliamentary regulations, this website and other mediums associated with the APPGBT will not be updated until then.
Thank you for your understanding.
Brain Tumours - a cost too much to bear?
In early 2018, the All-Party Parliamentary Group on Brain Tumours (APPGBT) launched its first-ever Inquiry. This sought to learn more about the economic and social impacts of a brain tumour diagnosis in order to shine a light on these issues, many of which, although seemingly invisible, are felt deeply.
The Inquiry gathered extensive evidence from a variety of stakeholders, including smaller and larger charities, researchers, doctors, surgeons, academics, representatives of drug companies and, most importantly, brain tumour patients of all ages and their families.
This evidence was compiled and published in a report entitled 'Brain Tumours - a cost too much to bear?'.
The evidence gathered was extensive and revealed that the costs of brain tumours are borne by patients, their families and the wider society. The Inquiry’s key findings included:
- The costs faced by brain tumour patients are varied, ranging from loss of income through to higher domestic bills and costly home modifications. The Inquiry received evidence that the average household affected by a brain tumour will lose £14,783 per year versus £6,840 for all cancers.
- The costs of brain tumours to the wider economy manifest themselves as high costs for the NHS during treatment and rehabilitation, loss of tax revenue and the costs of supporting brain tumour patients and their families via the benefits system. The economic costs of brain tumours among working-age people have been estimated at £578 million per year, ranking the third highest amongst more common cancers behind lung (£1.2 billion) and breast (£635 million).
- Younger brain tumour patients experience less economic detriment because they are financially dependent on their parents or guardians but will experience more social issues as this disease affects them at an important stage of their development. They will have to bear its burden for the rest of their lives.
- The root cause of these high costs is that no significant scientific breakthroughs have occurred in the brain tumour sphere for decades. The limited treatments that are available, at best, extend life and do little to ameliorate the debilitating effects of a brain tumour.
Based on these findings, the Inquiry’s report makes key recommendations aimed at driving immediate reforms to reduce costs, particularly for patients, as well as facilitating longer-term improvement in outcomes. These include a need to stimulate further research funding and improve early diagnosis rates. If brain tumours continue to be diagnosed late, with few treatment options and no sign of a cure, then the economic and social costs of brain tumours will always be unnecessarily burdensome.
What happens next?
The topics raised in the report will be used to guide and inform the future work of the APPGBT. Working with key decision-makers, the APPGBT will continue to strive to improve outcomes for brain tumour patients and their families and facilitate the implementation of these and other recommendations.
To stay updated, follow us on Twitter @braintumourrsch and use the hashtag #APPGBT