Community Involvement Hub

Improving the experiences of people with a learning disability

The Macmillan Cancer Learning Disability Project has worked to improve cancer services and experiences for people with a learning disability, their families and carers. It is integrated into the work of the North East and Cumbria Learning Disability Network and works closely with the Northern Cancer Alliance.

We are really pleased to share the new Macmillan Cancer Learning Disability project resource website detailing the work completed over the last 4 years to improve cancer services and experiences for people with a learning disability.

The report looks at achievements over the past four years, highlighting work that can be replicated or adapted to enable more people with a learning disability to get access to good quality cancer services and care. To access the website please click here

Cancer Support Network North East


We are very pleased to announce the launch of The Cancer Support Network North East. This is a collaboration of VCSE organisations in the North East who offer a range of services for people affected by cancer. To learn more about the network and its membership you can access their new website here.

Raising money to beat cancer – well done Katie & Chris!

Everyday across July two of the Cancer Alliance Team, Katie Elliot and Chris Tasker (CRUK GP’s) ran, cycled and walked to support Cancer Research UK to raise money to support further research and education around prevention & early diagnosis. They come together with a team of CRUK GP’s to raise awareness of the importance of early diagnosis and the need to fundraise to support CRUK. Katie says “Cancer is happening right now, which is why I’m fundraising right now for Cancer Research UK. There’s no time to lose! Donate to my page today and help support earlier diagnosis of cancer”.


New ways of raising awareness during the COVID-19 pandemic

Be Cancer Aware is a co-production project. Over the past 18 months they have been delivering cancer awareness courses across the North East and Cumbria to people with a learning disability, families and carers. As with many things they are no longer able to go out and meet groups so Be Cancer Aware are developing new ways of getting our cancer awareness messages out into the community. The signs of cancer film has been made to help people with a learning disability understand more about cancer and what to do if they are worried. More easy read information can be found at:

Co-production of a passport to support people living with mental health conditions who are affected by cancer

During 2019, members of the Macmillan Mental Health Cancer Care Co-production Group co-created and piloted a ‘Passport to my Health and Well-being’ during 2019. The passport was developed in response to information collected from members of the public who were living with or caring for people living with mental health conditions and affected by cancer and from a range of staff working in mental health, cancer and support services and organisations.

The co-production group identified specific support needs for people undergoing cancer diagnosis and treatment and developed a small booklet with an attached pocket, giving people the opportunity to state their current support networks, within and outside of the NHS, information about themselves and their interests and abilities when well and request additional support when attending appointments. At the back of the booklet is a pocket containing refillable appointment pads and a separate booklet where the person / carer can record queries, signs and symptoms and important information for their health professionals and where the health professionals can record their responses or additional important information that the patient / carer needs to remember and share with others in their support network.

Co-production group members preparing the           passports for distribution to the pilot sites

The co-production group consulted widely with members of the public, staff in cancer and mental health services and patient and carer groups. This important feedback led to an improved revision of the passport, that has been readily received and piloted across a range of services, including mental health services, cancer pathway and treatment services, primary care services, hospice day services and Macmillan Cancer Information Services.

The co-production group also designed the pilot programme and evaluation process and will be supporting the structured interviews with staff from the pilot areas in early 2020 to collect qualitative data regarding the passport. The results of the evaluation will influence the next stage of the passport development and subsequent rollout across the area. Some members of the co-production group have lived experience of mental health conditions and cancer. Staff working in mental health and cancer services were co-opted to the group and actively contributed to the design process and wording of the passport. Members of the co-production group helped prepare a presentation describing the passport, that was delivered by project lead to the Integrated Care System for the North East and North Cumbria Mental Health Workshop The delegates gave a favourable feedback to the passport presentation. For further information about this project contact

Congratulations to our Kath Jones and her singing ladies!


Kath Jones and her ladies choir the ‘Gilpin Singers’ gave a wonderful early Christmas present to the Phoenix Oncology Day Unit at Sunderland Royal Hospital. The singing ladies raised a fantastic £1100 after holding a charity event in recognition of the care the unit provided for one of its fellow members Beth.

Beth says ” I felt a little lost after my treatment but knew that I had to help myself so when the opportunity to join a choir came about, I was extremely keen on a number of levels. One, I was socialising again and had an evening out! This meant that I felt pretty normal not like a cancer patient. Secondly, singing was just wonderful; it was fun; it made me feel alive and full of joy as well as creating a new social environment to meet new people and friends”.

‘Be Cancer Aware’ – Time to Talk About Cancer

‘Be cancer aware’ is FREE peer education training, designed to support people with learning disability, families and carers understand more about cancer. It is a co-design piece of work, aiming to engage people with a learning disability in design, delivery and evaluation and involved a number of organisations that support people with a learning disability. The training programme provides people with a opportunity to learn about cancer in a supportive environment using accessible information and audience participation. For further information on how to book a training session with a local peer education team, please click here.


Macmillan films – the benefits of engaging people affected by cancer

Macmillan has produced two short films about the benefits of engaging people affected by cancer in the development, design and delivery of cancer services.  The films – one aimed at people affected by cancer and one at professionals – are the culmination of over a year’s work with a group of patients, carers and healthcare staff, who want to share their enthusiasm for engagement with others.

The project has been truly collaborative, bringing people who’ve had a cancer diagnosis and those that care for them together with cancer professionals to shape the project with their knowledge and experience.  Together they agreed key messages and audiences, appointed a video producer & came up with a concept, wrote the scripts and starred in the films.  The group have been so committed to the project and I’m really proud of what they’ve achieved.


Patients & Carers Making a Difference

There are currently four cancer patient and carer groups who meet in the NCA region. Membership consists of patients, carers and health professionals.  They are all supported by their local NHS Trust Lead Cancer Nurse and have links with Healthwatch, PALS, and CCG’s.

Group members represent the voice of cancer patients, their families and carers. Their aim is to improve cancer services and the experience of people affected by cancer in their local area. They can also provide an opportunity for members to suggest ways of improving services and contribute to cancer initiatives.

All of the groups are keen to attract new members who are willing to contribute and hopefully help develop solutions to issues raised. For further information please see the information below:

City Hospitals Sunderland Cancer Patient & Carer Group – for further information please email

Northumbria Cancer Patient & Carer Group – for further information email or call 07817 515265. Alternatively access the group’s website at

County Durham & Darlington Cancer Patients & Carers Group – for further information please access the group’s website at

North Tees & Hartlepool Cancer Patient & Carer Group – for further information please ring Alan Chandler on  01642 383041 or email

Working partnership with patients to developing important patient information

County Durham & Darlington NHS Foundation Trust has recently launched a new patient information film that provides patients and families with important information about the urgent “2 Week Wait” referral. This film was developed in partnership with patients and carers from across the County Durham and Darlington area with aim of providing helpful and accessible information for patients whose GP has referred them for an urgent “2 Week Wait” appointment at the hospital.

To view the “2 Week Wait” patient information film, please click here 

Congratulations to a member of NCA public involvement project steering group!

Massive congratulations to Kirsty who is a member of Alliance project steering group. Kirsty has been named as one of the 60 winners of the first Learning Disability and Autism Leaders’ List. Kirsty was named a winner in the Changing Communities category. This is a national award and organisers received nearly 600 nominations! We are all extremely proud of Kirsty and very grateful for her contribution to the NCA public involvement project.

For further information about Kirsty’s award please click the following link:

Sharing experiences of cancer care and treatment:

Healthwatch is the independent national champion for people who use health and social care services. Their sole purpose is to understand the needs, experiences and concerns of people who use health and social care services and to speak out on their behalf. They focus on ensuring that people’s worries and concerns about current services are addressed.

There is a local Healthwatch in every area in England. They are there to listen to what you like about services and what you think could be improved. No matter how big or small the issue, they want to hear about it. If you have an experience of cancer treatment and care you would like share, please click on your local Healthwatch below to access their website:

Healthwatch County Durham 

Healthwatch Cumbria

Healthwatch Darlington

Healthwatch Gateshead

Healthwatch Hartlepool

Health Middlesborough

Healthwatch Sunderland

Healthwatch Newcastle

Healthwatch North Tyneside

Healthwatch Northumberland

Healthwatch North Yorkshire

Healthwatch Redcar and Cleveland

Healthwatch South Tyneside

Healthwatch Stockton on Tees