The Macmillan Improvement Programme for Brain Tumour and CNS Cancers

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 to give people with rarer cancers the level of care they deserve.

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

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

About the improvement programme

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 focuses on the quality of a person’s life after treatment has ended. The devastating impact of a brain tumour or CNS cancer diagnosis goes beyond the individual with the diagnosis. Family, friends and carers also require support and information before, during and after treatment. We know fantastic support services available during and after treatment exist and can make a huge difference to people affected by cancer.

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 Cancer 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.

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Watch: Hear from patients on the impact of brain and CNS cancer

Watch: Hear from patients on the impact of brain and CNS cancer


Get involved

We need the help of people affected by this rare form of cancer to be involved with the improvement programme to shape better care for patients with brain tumours and central nervous system cancers.

Macmillan would like to understand what is good, bad, or needs improving about all different parts of the brain and central nervous system tumour journey.

Could you share your experiences by telling us your story so we can improve services in the future? There are a lot of different things we are looking at improving, and by telling us about your experiences, you can help us to make a big difference.

Being involved 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 Macmillan Engagement Lead, Nicole Kirby.


What's next for the programme?

Phase two of the Macmillan Improvement Programme for Brain Tumour and CNS Cancer will focus on developing elements of the Recovery Package, which includes Holistic Needs Assessment (HNA), risk stratification, Cancer Care Reviews, treatment summaries and health and well-being events. Phase two will also focus on palliative care.

There will continue to be a strong focus on developing improvements within the programme both with health and social care professionals and patients and carers/families.

The programme continues to be evaluated by and external provider and details of outcomes from Phase one will be shared here very soon.

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Watch: Learn about the objectives and aims of the improvement programme

Watch: Learn about the objectives and aims of the improvement programme

The programme’s achievements so far...

Recruitment of the neuro-oncology care coordinator (NOCC) role

The programme team identified the need for a Macmillan neuro-oncology care coordinator (NOCC) to support the clinical nurse specialists. As the involvement of people affected by cancer is at the centre of the programme’s work, patients and carers were involved in supporting the development of the role and interview process, which offered valuable understanding and feedback.

The Macmillan NOCC role is making a significant difference by supporting the clinical nurse specialist team in being the point of contact for patients and carers. Plans are in place to ensure the activities being undertaken by the Macmillan NOCC are understood, to enable the value and impact of the role to be captured as part of the evaluation process of the programme.

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A series of films about the work of the programme

The programme team has produced a series of short films that highlight the complexity of being diagnosed with a brain tumour or a central nervous system cancer. The films include insights and experiences from patients, carers and healthcare professionals about the life changing impact such a diagnosis can have.

By sharing patient and carer stories through the series of films, the programme team is influencing providers and commissioners to deliver transformational change to improve the experience for this group of people affected by cancer.

Helen Sowden, Macmillan Cancer Support Programme Manager, said: 'Developing these films has been a huge part of our evidence-gathering process for the programme. We need to have examples of true, lived experiences of patients and carers to ensure that the changes made will have a positive impact. We hope that the films will raise the awareness of brain tumours and central nervous system cancers and the life changing impact such a diagnosis can have on both patients and carers.'

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Working in partnership – healthcare professionals

The Macmillan Improvement Programme for Brain Tumour and Central Nervous System (CNS) Cancers works closely with members of the clinical team who see people affected by brain tumours and central nervous system cancers.

Neuro-oncology Clinical Nurse Specialist Service

The neuro-oncology clinical nurse specialist service is based within the Neurosurgical Unit at Hull Royal Infirmary and the Queens Centre for Oncology and Haematology at Castle Hill Hospital and includes three clinical nurse specialists and a neuro-oncology care coordinator (NOCC).

The clinical nurse specialists (CNSs) work across the neurosurgery and oncology departments within the hospital Trust to manage patient pathways and provide specialist advice, information and supportive care to people affected by cancer who require neuro-oncology care. These CNSs are available to provide input at all stages of the cancer journey, acting as key workers, liaising with other specialists and being the link between the patient, GP and community services, and the neuro-oncology multi-disciplinary team.

A large part of the team’s role is ensuring patients’ treatment plans and follow-up care are coordinated and they receive the necessary neuro-oncology care they require. This can include ensuring patients’ scans are booked on schedule, their images reviewed at the multi-disciplinary team meeting in a timely manner and they receive results quickly.

The team also provides psychosocial support, pain and symptom control and medicines management as appropriate.

Brain and Central Nervous System Therapy team

The Brain and Central Nervous System Therapy team provides specialist occupational therapy and physiotherapy to people with primary tumours of the brain or central nervous system. It is a small team based at the Queens Centre for Oncology and Haematology in Castle Hill Hospital in Cottingham and has three staff members - a physiotherapist, an occupational therapist and a therapy assistant.

The team provides community therapy to those living in the Hull and East Riding of Yorkshire area. The team signposts patients onto local therapy teams in North Yorkshire and Lincolnshire and can provide an advisory service to act as a liaison between the neuro-oncology team at Hull and community therapists.

Therapy is most commonly provided in patients’ own homes, but the team can also provide outpatient therapy at Castle Hill Hospital e.g. gym sessions.

The primary aim of the team is to improve the quality of life and independence of individuals living with brain tumours and central nervous system cancer. The team also aims to provide to support and advice to the families and carers of those affected. Individuals with brain or spinal tumours can experience a range of difficulties with everyday activities. Some people experience physical problems such as difficulty walking or balance issues. Others may experience changes in their vision, thinking or behaviour. Occupational therapy and physiotherapy can help people to participate in the activities that they enjoy.

Neuro-oncology Neuro-psychology Service

The Neuro-oncology Neuro-psychology Service is a specialist service for people with brain tumours and central nervous system (CNS) cancers. The service provides holistic assessment, rehabilitation and psychological intervention to individuals experiencing cognitive, emotional or behavioural difficulties as a result of their diagnosis. The service is based within the Queens Oncology Centre at Castle Hill Hospital.

Receiving a diagnosis of a brain tumour or central nervous system cancer can be life changing. People may have trouble managing the many challenges associated with diagnosis, treatment and changing symptoms. Cognitive difficulties such as memory and attention problems are common, and can make it difficult to resume and maintain previously enjoyed activities. The emotional impact on both the patient and their family can be considerable. It can sometimes feel that other people do not really understand the problems, and this can make it harder to manage. The complexity of these challenges reflects the complexity and severity of the illness, its treatment, and the person’s personal life circumstances before the illness.

The neuropsychology service aims to support patients and their families through the illness. The type of intervention offered will be based on patient need, with the aim of minimising the impact of any cognitive symptoms, reducing distress and enhancing wellbeing.

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