One of the areas of focus for Achieving world class cancer outcomes: a strategy for England is early diagnosis, with a new target for 95% of patients to be diagnosed within four weeks of being referred for testing by a GP. Early diagnosis of brain tumours is an area in particular need of improvement.
Indeed, our HeadSmart campaign to raise awareness of the symptoms of brain tumours in children was started because diagnosis times in the UK are slower than those in other countries. Improvements will require not only faster diagnosis from when someone first visits a GP, but also improved awareness of the symptoms so that people know when to visit a doctor in the first place. We were very pleased to see the taskforce recognise the impact of HeadSmart to date, in recommending that that 'Public Health England and NHS England should evaluate data from the HeadSmart programme to determine what factors influence late diagnosis of brain tumours in children and whether tailored initiatives would be appropriate'.
The report also highlights the need to improve support for people living with a cancer diagnosis. Our recent report, Losing Myself: The Reality of Life with a Brain Tumour, revealed that one in three people with a brain tumour may experience personality changes, four in five experience mobility problems, and nine out of ten have become more reliant on others. The roll out of a cancer recovery package as proposed by the task force sounds like it will be a good start, provided it contains the right elements for people with a brain tumour.
We were also pleased to see the recommendation for clear guidance mandating that commissioners must meet excess treatment costs for clinical trials. Increased participation in trials is one of the issues that we are trying to address through our five year plan, our strategy. Difficulty in securing reimbursement for excess treatment costs from commissioners is one barrier to non-commercial research taking place, and we will be working to address other barriers for brain tumour research through our own strategy.
This is the first time that NHS England's cancer strategy has been developed by an independent group. This is a positive step as the broader cancer community has been given a real opportunity to shape the recommendations. The taskforce's membership included a number of charities, including Cancer52 which we are a member of. The work of the task force was informed by a call for evidence, which The Brain Tumour Charity responded to; and a number of workshops, two of which we attended.
However, now that the Taskforce has issued its recommendations, the test will be to ensure that those that would be beneficial for people with a brain tumour are taken up by the arms length bodies tasked with implementing them. Over the coming months, we will be following the progress of this carefully, to hold these bodies to account.