REPRESENTATIVES from Scarborough-based charity Ellie’s Fund travelled to Westminster to lobby MPs about brain tumour care.
Heather Othick and Diane Whorton were calling on politicians to sign up to minimum standards which would put an end to the current “postcode lottery” and ensure NHS reform does not threaten the Government’s own plans to improve care.
Guidelines on improving outcomes for people with brain tumours were published in 2006, but a five-year delay in national implementation has led to an uneven spread of treatment, rehabilitation and care across the country.
During the lobbying event 200 patients, carers, charity representatives and medical professionals asked MPs to sign up in support of the guidance and make sure the guidelines are not lost in the wider NHS reforms.
Heather Othick, who founded Ellie’s Fund after the death of her 14-year-old daughter who fought two brain tumours, said: “We are calling on all MPs not to forget brain tumours and to ensure that no-one misses out on the best standards of care.
“It would be appalling if, just as the Government is about to solve this problem, the progress they promised is lost.
“When it comes to brain tumours lives are on the line and further delays to implementation would be unforgivable.”
Professor Garth Cruickshank, consultant neurosurgeon at the Queen Elizabeth Hospital Birmingham, said: “The fact we are so close to seeing real progress which will drive up standards of brain tumour care is very welcome, but it is essential that the lessons we have learnt from introducing the guidance measures and peer review are not lost.
“In the five years since NICE’s Guidance on the care of brain tumour patients has been published but not uniformly implemented, many patients and their families have suffered. This is totally unacceptable.
“We are asking MPs to sign up to implementation of the guidance to ensure the principles behind it are not lost in the radical NHS reform agenda this government is forcing through.”
To find out more about Ellie’s Fund go to www.elliesfund.com