The National Institute for Health and Care Excellence (NICE) recently published a new quality standard for brain tumours in adults in England and Wales. The new quality standard covers diagnosing, monitoring and managing any type of primary brain tumour or brain metastases in adults (defined as aged 16 or over).
We’re proud to formally support NICE’s new quality standard for brain tumorus and are excited about working with NICE, healthcare professionals, decision-makers and patients to improve access to the best treatment and care for everyone affected by a brain tumour.
NICE quality standards set out priority areas for quality improvement in health, public health and social care.
They highlight areas with identified variations in current practice. Each standard includes:
- a set of statements to help improve quality
- information on how to measure progress.
The new standard contains five quality statements, each one addressing an identified priority area for improvement, following consultation with patients, experts, health bodies and patient representative organisations including The Brain Tumour Charity.
The five statements and areas for improvement in the quality standard are:
- GPs have direct access to MRI for adults with suspected brain tumour.
- Adults with brain tumours have a named healthcare professional who coordinates their health and social care support.
- Adults with radiologically enhancing suspected high-grade gliomas that are suitable for resection of all enhancing tumour have 5‑aminolevulinic acid (5‑ALA)-guided resection.
- Adults who finish treatment for brain tumours have an assessment and discussion about their risk of late effects of treatment at their first follow‑up appointment.
- Adults with brain tumours have access to neurological rehabilitation in the community and as an outpatient or inpatient.
The standard applies in England and Wales, with decisions on how they apply in Scotland and Northern Ireland made by ministers in the Scottish Government and Northern Ireland Executive.
Making sure our community’s voice is heard
One of the reasons we’re so proud to support the new quality standard is that our community’s voice was strongly represented during the development, with NICE consulting both patients with lived experience of a brain tumour and patient representative organisations – including The Brain Tumour Charity.
The experiences that so many of you have shared through our Improving Brain Tumour Care Surveys were invaluable in helping us identify key issues and ensure patients’ voices and experiences were heard throughout this process.
The evidence we submitted was then discussed, alongside evidence submitted by other charities and bodies, by the NICE committee, to help develop the final quality standard. This committee included experts in brain tumour diagnosis, treatment and research as well as those with lived experience of brain tumours.
Our response to the new quality standard
As part of the consultation process, we urged the committee to include improving access to support for patients living with high grade and low grade brain tumours as a priority, following initial results from our Improving Brain Tumour Care surveys showing that many had not be given a named healthcare professional to co-ordinate their health and social care support.
We’re therefore really pleased to see this included as a key quality standard for local providers and commissioners and identified as a critical area for improvement.
Similarly, our Improving Brain Tumour Care surveys found that many people diagnosed with a brain tumour weren’t receiving a Holistic Needs Assessment. So, we’re delighted to see that the rationale for the new quality statement includes the need to conduct holistic needs assessments at key transitions and ensure care plans are in place.
We are also pleased to see the inclusion of GPs having “direct access” for MRI scans for adults with suspected brain tumours (where a GP refers a person for an MRI but retains responsibility for their care including following up and acting on the results) as a priority area for improvement.
It’s hoped that better direct access to MRI scans for GPs across the country will be beneficial in helping reduce the diagnosis time for adults with brain tumours.
We look forward to working with healthcare providers and decision-makers to ensure the new standard translates into real-world benefits for those affected by a brain tumour.
Make your voice heard
Being able to provide NICE with evidence from our Improving Brain Tumour Surveys was crucial in making sure that the community’s voice was heard during the consultation period.
If you’ve been diagnosed with a brain tumour, or care for someone who has, and would like to help us to effectively represent patients’ voices and experiences in the future, please take part in our Improving Brain Tumour Care surveys.