A Great Paxton mum has welcomed a new report that has revealed the “devastating” cost of a brain tumour diagnosis.
Carrie Holbrook, who lost her husband Steve to a brain tumour in November, 2016, has spoken out about the financial burden of the condition, which is estimated by a leading research charity to be double that of other cancers.
Steve and Carrie met at Redborne Upper School, in Ampthill, Bedfordshire, and believed they would grow old together. They married in 2005 and had two children, Emma, now nine, and Mason, six. Steve was an officer for Bedfordshire police for 15 years. He died at the age of 37, just 21 months after being diagnosed with an aggressive brain tumour.
Carrie said: “When Steve was diagnosed, not only did we have the emotional and physical turmoil of his diagnosis to deal with, we also had the extra concerns of how we would manage financially, knowing that Steve’s diagnosis was life-limiting.
“One of the first things that happened to Steve was that his driving licence was taken away. This took away a lot of Steve’s independence and meant he was unable to get to work 40 miles away, without the very kind help of some of his colleagues.
“We also lived 25 miles from Addenbrooke’s Hospital, Cambridge, where Steve had to go for radiotherapy and chemotherapy, as well as numerous scans, oncology and hospital stays throughout his 21-month journey.
“We had to factor in additional petrol costs and childcare needs, plus the need to take time off work to attend appointments.
“Towards the end of his life, it became impossible for Steve and me, as his primary carer, to continue to work. Steve’s health deteriorated very quickly and we were looking at the possibility of having to make some home adaptations at what would have been additional expense.
“Steve’s death has had a huge impact on the family and left me a single parent and sole provider for our two children.”
The report, Exposing the Financial Impact of Brain Tumours released by the Brain Tumour Research charity on October 15, reveals the financial impact of a brain tumour diagnosis is double that for all cancers.
Patients said they suffered a loss of independence and isolation which, combined with a dramatic decline in their earning potential, brought an impact almost as distressing as the disease itself.
The report, based on the experiences of 368 people will be fed into a formal inquiry into the hidden costs of a brain tumour being led by the All-Party Parliamentary Group on Brain Tumours for which Brain Tumour Research provides guidance.
The report found the average financial loss of £14,783 per household per year – more than double the £6,840 for all cancers.
It found that households face an annual rise in household bills of £1,000 and many also have to make expensive modifications to their homes.
Patients also have to find about £1,582 in travel costs for hospital visits and they suffer a £391 increase in travel insurance making a much-needed holiday a distant dream for many.
Sue Farrington Smith, chief executive of Brain Tumour Research, said: “The financial penalties, the loss of independence and the consequential feelings of isolation compound the poor prognosis endured by brain tumour patients and this has got to stop.”
The charity is calling on the Government to speed up access to better treatments by stimulating further increases in the national investment for research into brain tumours, offset the debilitating loss of income by providing additional benefits and fund easily accessible financial support for patients while they are receiving treatment.