In our Defeating Brain Tumours, strategy we pledged to improve life today for people living with a brain tumour by helping them better navigate the system.
There is a basic standard of care that we believe all patients in the NHS should experience. At present this standard is not being met with access to treatment and care varying depending on numerous factors, including postcode.
Our new Patient Guide will better inform those affected about the treatment and care they should expect and empower them to feel more confident when having conversations with their medical team.
We understand that a brain tumour diagnosis can be frightening and that for many people this is the first time they’ve had to navigate the healthcare system. It can be an overwhelming and uncertain time. Our patient guide has been designed to help them through the process.
Emma Tingley, Director of Services and Influencing, said, “The Patient Guide is a hugely important resource for our community. We’ve worked with a steering group of experts from the brain tumour field, including those personally affected and carers and had numerous nurses and allied health professionals consult with us.
“Although we want it to reach those who are newly diagnosed right at the beginning of their journey (because we know we can help them), it is also suitable for everyone living with brain tumour – whatever stage they are at – sadly this is because we know that they are not getting the basic level of care that they deserve.”
The Patient Guide will help our community navigate the healthcare system
“Our aim is that it will help people to understand what they should expect and to empower them to ask if they are not getting it.”
The Patient Guide will drive improvements in the standard of care that brain tumour patients receive in the NHS across the UK.
We have established an initial benchmark of current access through a survey on our website that was active in September and October 2016. Some of the main findings in the survey were as follows:
- At the point of diagnosis, 40% had not been given the opportunity to discuss treatment options available to them, 62% had not been given the name and contact details of a key worker and only 27% had been given information to take away;
- During treatment, nearly 8 in 10 said that they had not been told about clinical trials available to them, and only 18% said that they had been given the opportunity to biobank samples for research;
- After treatment, 65% of patients said they had not been referred to other services for support (physiotherapy, occupational therapy, speech and language therapy).
“Our implementation plan is for the long haul – we want to improve service delivery, improve access to biomarker testing and increase opportunities to get involved in research.
“We also want the basic stuff to happen – for people to be given time to ask questions, to know who it is they can contact if they are worried, to have the right information about treatment and side effects and to be taken care of in a sensitive and caring way. “