Published on 12 Apr, 2017
Watch: An overview of the programme and hear from patients and carers
The Macmillan Improvement Programme for Brain Tumour and Central Nervous System (CNS) Cancers is the first programme of its kind to focus on improving the patient experience for people with rare and complex cancers.
Rare and less common cancers make up just under half (47%) of all newly diagnosed cancers in England for men and women. Macmillan is concerned that as the NHS is under increasing pressure to meet the needs of a growing number of people living with cancer, it will struggle further to give people with rarer cancers the level of care they deserve.
People affected by cancer are at the core of the Macmillan Improvement Programme for Brain Tumour and Central Nervous System (CNS) Cancers. Meaningful involvement from people affected by cancer is ensuring we understand the reality of life for people living with this rare and complex cancer.
The complexity of brain tumours and CNS cancers, and the consequences of treatment, can be overwhelming. People affected by cancer have told us they need more support in adjusting to life after treatment, knowing what to expect, where to get support for friends and family and understanding what’s normal.
Living with and beyond a brain tumour or CNS cancer is not just about saving lives; it’s about the quality of a person’s life after treatment has ended. We know fantastic support services available during and after treatment exist and can make a huge difference to people affected by cancer.
The devastating impact of a brain tumour or CNS cancer diagnosis goes beyond the individual with the diagnosis. We know that family, friends and carers also require support and information before, during and after treatment.
Working together with health and social care professionals and other partners we are working to improve the whole cancer experience from early diagnosis, treatment, living with and beyond cancer and end of life care.
We want everyone affected by this form of cancer to have equal access to high quality information and support closer to where they need it.
The Macmillan Improvement Programme for Brain Tumours and CNS Cancers is working with the NHS in the Vale of York, Hull, East Riding, North Lincolnshire, North East Lincolnshire and Scarborough and Ryedale who are also the programme’s host.
For more information about the programme please visit www.macmillan.org.uk/braincns