A BRAVE Malvern father-of-two battling an incurable brain tumour has had his heartbreaking story told at Westminster.
Ben Lindon’s experiences were published in a report presented to the All-Party Parliamentary Group on Brain Tumours in a bid to raise awareness of the troubles those battling the disease deal with.
The 39-year-old former Bullivant Media reporter was diagnosed with a brain tumour ten years ago and had to undergo surgery and chemotherapy.
A recent deterioration in his condition has meant he had to temporarily move into sheltered housing in Ledbury. He now relies on a wheelchair and mobility scooter to get around while he undergoes rehabilitation.
In the report, Ben said having a brain tumour had lost him tens of thousands of pounds of income over the last decade and left him with a struggle to provide for his family.
“I went from having an exciting career as a journalist to having to retrain as a self-employed tree surgeon because no one wants to employ someone with a brain tumour,” he said.
“I then had to pack in that job as my seizures made me unfit to work.
“After that I worked part-time in HMV and then relied on benefits. Living on benefits doesn’t bring in anything like the same money as I earned as a tree surgeon.”
“I have had more than 120 cycles of chemotherapy and continue to care for my two ‘miracle children’ who were born after I was told my chemotherapy treatment would make me infertile.”
He revealed how he now has to rely on another member of the family being with him or pay to have additional support when looking after his children.
“I am having to live in sheltered housing alongside old-age pensioners as I couldn’t find any suitable housing provision locally for people of my age who have disabilities,” he said.
“It can get quite lonely as I have had to move away from my home town and don’t get to see my children or my friends as often as I would like.”
‘Brain tumours – a cost too much to bear?’ is a report produced from the findings of a Parliamentary inquiry into the financial and social impacts of brain tumours.
The report found patients were faced with ‘an immediate financial burden’ and were required to surrender their driving licence which had led to ‘a loss of independence’.
It also found the experience of children, teenagers and young adults with brain tumours was ‘dismaying’, adding it affected them at an important stage of their development and they would have to ‘bear its burden’ for the rest of their lives.
Derek Thomas, chairman of the parliamentary group, said the results of the inquiry would be used to improve the outcome for patients battling the disease.
Sue Farrington Smith, chief executive of the Brian Tumour Research charity, said Ben’s story demonstrated why the issues surrounding brain tumours should be highlighted.
“Understanding the very high ongoing costs of brain tumours is vital and the Government must find additional ways to minimise these costs.” she said.
