Charity lobbies MPs after report highlights burden of tumour patients

Nov 24, 2018

Brain Tumour Research’s chief executive Sue Farrington Smith travelled to Westminster with supporters and campaigners to attend a meeting of the All-Party Parliamentary Group on Brain Tumours.

The charity has published a hard-hitting report on the economic and social impacts faced by patients and their families.

Brain Tumour Research provides the secretariat for the APPG-BT and, following the launch of an inquiry into the brain tumour burden, helped to gather evidence from the public, as well as to put together the subsequent report.

  • Pictured: Sue Farrington Smith (right) with Nicky Morgan MP, chair of the Treasury Select Committee.

Brain tumours – a cost too much to bear? is the report of a Parliamentary inquiry into the economic and social impacts of brain tumours which received more than 200 online submissions from patients and their families and comprehensive written submissions from charities and academics.

It also held oral evidence sessions during June and July from researchers, doctors, surgeons, academics, representatives of drug companies as well as brain tumour patients of all ages and their families.

Its key findings include:
  • The incapacitating nature of a brain tumour, a cancer of the body’s most important organ, can see patients faced with an immediate financial burden and the severity of the disease all too often means people contribute less to the economy and society at large.
  • Costs range from loss of income through to higher domestic bills and costly home modifications. Additionally, patients are required to surrender their driving licence, leading to a loss of independence.
  • The experience of children, teenager and young adult patients is dismaying; they will experience more ‘social’ issues as the disease affects them at an important stage of their development and they have to bear its burden for the rest of their lives.

Mrs Farrington Smith said: “We are extremely grateful to all our supporters, campaigners and families who shared their personal stories demonstrating why we must continue to highlight this issue and do everything we can to improve outcomes for brain tumour patients.

“Understanding the very high ongoing costs of brain tumours is vital and the government must find additional ways to minimise these costs. We will continue to influence and find ways to minimise this unique burden through a combination of further research funding, earlier diagnosis, additional benefits, and improved post-treatment support for brain tumour patients and their families.”

St Ives MP Derek Thomas, who is chairman of the APPG-BT, said: “It was impossible not to have been personally affected by the wealth of emotionally compelling personal stories we heard during the course of this inquiry and my most heartfelt thanks go to all of the brain tumour patients and their families who helped us with this report.

“For those of us who were privileged to hear this evidence first hand it was an experience that will stay with us for a very long time. Over the coming months and years, we will use the results of this inquiry to keep brain tumours on the political agenda and improve outcomes for brain tumour patients.” 

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