People with rarer cancers are more likely to feel isolated and encounter poorer patient experience than those with cancers that are more common. One in five are not given any information about support or self-help groups after diagnosis. The Macmillan Improvement Programme aims to improve quality of life for everyone affected by this rare form of cancer.

Tens of thousands of people in the UK are currently living with a form of rare cancer. Cancer charity Macmillan is concerned that as the NHS is under increasing pressure to meet the needs of a growing number of cancer patients, it will struggle further to give people with rarer cancers the level of care they deserve.

About the improvement programme

People affected by cancer are at the core of the Macmillan Improvement Programme. Meaningful involvement will ensure we understand the reality of life for people living with this rare and complex cancer. This is the first Macmillan Improvement Programme to focus on a rare and complex cancer group.

The complexity of brain and CNS cancer, 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, 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 rehabilitation services exist and we want to highlight the huge difference these services make 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, social care and other partners, we will highlight how 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 Brain Tumour and CNS Cancer Improvement Programme will be working with the NHS in the Vale of York, Scarborough and Ryedale, Hull, East Riding, North and North East Lincolnshire.

Watch: An overview of the programme and hear from patients and carers

Get involved

We need the help of people affected by this rare form of cancer to be involved with the improvement programme.

If you have been told your tumour is low-grade or benign, Macmillan and partners are also interested to hear from you. At Macmillan we understand that these tumours can have a huge impact on your life.

Involvement in the improvement programme can range from taking part in surveys, being a member of a group discussion or talking to us one-to-one about your experience.

There are many ways to be involved, for more information email Patient Involvement Coordinator Nicole Kirby.