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Brain tumours kill more children and adults under the age of 40 than any other cancer

The NHS England Long Term Plan – what we think

by Erika Murigi

Last summer the Prime Minister announced additional funding of £20.5 billion per year for the NHS. This week’s publication of the NHS Long Term Plan is the Health Service’s response to how the money should be spent in England*.

The Plan outlines an ambitious vision for the future of the NHS from maternal and neonatal services to supporting people in old age, and includes important commitments on cancer.

There is much to be welcomed within the Plan and we are pleased to see that improving cancer treatment and care within the NHS is a Government priority, although there remain areas of interest for the brain tumour community where we would have liked to have seen more focus.

Of key note for brain tumour patients is confirmation that 5-amino levulinic acid (5-ALA) – known as The Pink Drink – will be available in every neurological centre in England and the completion of a £130 million upgrade of radiotherapy machines across England, including the establishment of two NHS proton beam therapy centres in London and Manchester. The Plan also commits to all cancer patients having access to a clinical nurse specialist by 2021 – a point we made in our NHS England consultation response, submitted in September 2018. It also puts forward measures to ensure cancer patients receive personalised support including a care plan and well-being support.

Early diagnosis is a key commitment with a pledge to diagnose 3 in 4 cancers at an early stage by 2028. In our consultation response, we put forward views on improving diagnostic processes and highlighted that the two-week referral time is not fit-for-purpose for many brain tumour patients, particularly those with a glioblastoma multiforme for whom a tumour can double in size within two weeks. As such, we welcome the focus on early diagnosis and look forward to reading more detail on how the health service will implement the changes required to make good on the Plan’s pledge.

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We were pleased to see a specific focus on children and young people with cancer (brain tumours kill more children and adults under the age of 40 than any other cancer), particularly its commitment to increasing the speed of diagnosis and access to personalised treatments.

While not specific to cancer, the Plan includes a section on ‘Research and innovation to drive future outcomes improvement’, including creating simpler standardised clinical trial processes and prices, increasing the number of patients registering to participate in health research to one million and targeted investment in areas of innovation, particularly genomics.

The aim is that, by 2023, 100,000 cancer patients a year can access genomic testing. Achieving this would make the NHS the first national health system to offer whole genome sequencing as part of routine cancer care. Indeed, during 2019, children with cancer will begin having their genomes analysed as the first stage of this process.

Genomic testing, where a patient’s entire genome (i.e. all of their genes) are analysed has two advantages for patients. Firstly, it may help identify a personalised treatment for that individual, improving both their survival and quality of life, as more effective and less harmful treatments can be utilised. Secondly, and perhaps more importantly for a complex condition like brain tumours, the data gained about the genomes of patients will help researchers build a more detailed understanding of the biology of this devastating disease, and whether or not any particular genes are involved in its development – we will, of course, monitor this area with interest.

Workforce has been a hugely topical issue in recent months and the Plan does rightly recognise the need for investment in the NHS infrastructure but currently lacks detail on addressing staff shortages. In our consultation response, we highlighted the need for growing the oncology workforce and our ideas for bolstering and retaining existing cancer specialists, including allowing time for clinical research – a crucial requirement for research into brain tumours.

The NHS Long Term Plan is an ambitious set of priorities that if achieved has the potential to transform the experiences of brain tumour patients and their families. However, there are still gaps that need to be addressed, particularly around the role of cancer research and innovation in improving outcomes and survival rates. We also feel there needs to be much more recognition that for some cancers, including brain tumours, prevention is irrelevant and for such cancers, a commitment to funding and carrying out research into the causes, and cures, is essential.

We will continue to monitor developments taking place in Westminster and ensure the voice of the brain tumour community is heard by those in a position to effect change. Sign up to become a Brain Tumour Research Activist and stay up-to-date with our campaigning work. 

* The 10-year plan is only for the NHS in England, but the devolved governments in Scotland, Wales and Northern Ireland will receive a proportional increase in funding, the details of which are expected to be announced later this year.

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