Grieving Aylesbury family tell their story as MPs learn of brain tumour burden

A Long Crendon family who lost a husband and father earlier this year are telling their story as MPs learn of the impact a brain tumour can have on patients and their families.

Thursday, 22nd November 2018, 10:20 am
Updated Thursday, 22nd November 2018, 10:27 am
Mike, Rob, Sarah & Chris Grimwood

Rob Grimwood was diagnosed with a glioblastoma brain tumour in October 2016 at the age of 51. He underwent two awake craniotomies at the John Radcliffe Hospital in Oxford and then pioneering immunotherapy treatment at the Macmillan Centre at University College Hospital in London, which sadly didn’t stop the tumour growing. Rob passed away in May, leaving his wife Sarah and two sons aged 20 and 17.

His wife Sarah is sharing their family’s experience as a hard-hitting report was published on Tuesday 20 November, and presented to the All-Party Parliamentary Group on Brain Tumours (APPG-BT).

Rob and Sarah

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Sarah said: “The impact of Rob’s brain tumour on our family has been enormous, but from a financial point of view we were very lucky compared to most families. Rob had income protection as well as private health care through his company Johnson & Johnson.

It allowed him to take part in an immunotherapy trial, costing around £250,000, paid for by his private health insurance, which gave us hope for a year. His income protection meant he continued to be paid 75% of his salary.

“We are only too aware that for many families the financial burden is horrendous with patients and their partners, who give up working to look after them, often losing their joint income and having to rely on benefits.”

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.

Derek Thomas MP for St Ives, 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.”

Sue Farrington Smith, Chief Executive of the charity Brain Tumour Research, said: “We are extremely grateful to Sarah for her courage in sharing her personal story which demonstrates 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.”