Today, the NHS Long Term Plan has been published setting out the future of NHS services. The plan has been eagerly awaited by healthcare professionals, charities and patients alike
We will upload a series of these responses throughout the day, including looking at what is missing from the plan and the difficulties in implementing it.
The good: reasons to be cheerful
5-ALA (The Pink Drink)
We are delighted that the plan reports confirmation that 5-Aminolevulinic Acid (5-ALA) will be available in every neurosurgical centre in England. 5-ALA is a surgical intervention in the form of a drug given to some patients with high grade gliomas. Known informally as the pink drink, the drug makes brain tumour cells illuminate under fluorescent light.
We campaigned tirelessly on this issue and submitted freedom of information requests to assess the state of access, which was then included in Baroness Tessa Jowell’s incredible House of Lords speech last year. We found that just under half of neurosurgical centres in the UK offered either limited or no access to 5-ALA.
The commitment to make 5-ALA available across England is part of a broader promise to ‘speed up the path from innovation to business-as-usual, spreading proven new techniques and technologies and reducing variation’. We welcome this pledge which we hope will make a difference for less survivable cancers which have been overlooked for too long.
Clinical Nurse Specialists
We are committed to working with NHS England to improve access to Clinical Nurse Specialists (CNS). CNSs are a vital part of the care and support that we believe every person diagnosed with a brain tumour should be able to access. We are currently funding two CNS posts for people with brain tumours.
We found in 2016 that only 53% of people diagnosed with a low grade brain tumour had a single point of contact compared to 76% with a high grade brain tumour. We are pleased that the NHS recognise the value of a CNS or support worker and are delighted that they are committing to provide all patients with cancer access to this support by 2021.
It is widely known that many cancer patients’ care could be improved. The most recent iteration of the National Cancer Patient Experience Survey (NCPES) which was published in 2018, reported that too often patients aren’t getting access to a care plan.
Across all tumour types, only 34.9% of patients surveyed had a care plan. Similarly, only 34.7% of patients with a high grade brain tumour had a care plan. We know how valuable a care plan is in ensuring that care is joined up and are therefore pleased to see that by 2021, where appropriate every person diagnosed with cancer will receive a care plan as well as health and wellbeing information and support. This is a really positive acknowledgment of the importance of a care plan and we hope it will help to improve other aspects of patients’ treatment and care.
Proton Beam Therapy
The NHS is committed to providing cancer patients access to excellent treatment and care here in the UK. However, for too long patients have been forced to travel abroad to receive proton beam therapy. Proton beam therapy is a type of radiotherapy which is used to treat specific cancers.
It is welcome news that two NHS centres will be able to provide this treatment in the UK improving access to this important treatment. The Christie NHS proton beam therapy opened at the end of 2018 and the first patient received treatment there in December 2018. The next NHS centre will be at University College London Hospitals with treatment beginning in summer 2020. It is hope that eventually the two centres will be able to treat as many as 750 patients each year.
From 2019, all children with cancer will be offered whole genome sequencing. This is really encouraging news because it will allow for more comprehensive diagnoses as well as access to targeted treatments. It also has the potential to reduce the use of medications which may be harmful. Targeted treatments will mean fewer young patients need high doses of chemotherapy and radiotherapy and therefore limit the number who experience lifelong health problems.
We are already paying for biomarker testing for UK children with medulloblastoma; based on their results they could now be eligible to enrol on the latest European clinical trial, PNET5. This commitment will mean that more children should be able to access tailored treatments, improve their quality of survival and access clinical trials. It is really positive.
Quality of Life
The Plan has promised that after treatment, patients will move to a follow-up pathway that suits their needs, and ensure they can get rapid access to clinical support where they are worried that their cancer may have recurred. From 2019, NHS England will begin to introduce an innovative quality of life metric – the first of its kind – to track and respond to the long-term impact of cancer. This will come as welcome news for our community where the impact of a brain tumour on quality of life is extensive and far-reaching, both physically and broader cognitive functions such as speech and memory.
91% of adults said their brain tumour affects their emotion and mental wellbeing, three out of five people with a brain tumour experience fatigue and one in four people with a brain tumour experience some form of cognitive problem.
Data and Digital Tech
The plan has a digital focus and recognises the importance of data in advancing healthcare improvements. We are particularly pleased that the NHS is committing to working with the voluntary sector and other organisations to create a range of apps to support particular conditions. At The Brain Tumour Charity we know that innovation is the way forwards and that apps and data have the potential to shape future advances in research through the collation of information and data.
Our new online app, BRIAN (the Brain tumouR Information and Analysis Network, is a way for those affected by a brain tumour to learn from each other’s experiences. It also has the potential to shape future research and enable clinicians to make more informed decisions. We welcome the NHS to work with us to ensure that BRIAN works for all.
Part two of our look at the NHS Long Term Plan highlights what we feel is missing.
Your voice matters
By campaigning with The Brain Tumour Charity, you can help ensure the issues which affect the brain tumour community remain a political priority.