Start of Macmillan funding

Following on from the successful 1 year ACE project looking at cancer screening and people with a learning disability, Macmillan offered to fund the project for 2 years.

Our aim, to improve the services and experiences of people with a learning disability along the whole cancer pathway.

2016 - 20

Bowel cancer screening flagging pathway

The bowel cancer screening flagging pathway works across the region to give people with a learning disability supported access to bowel screening.

The pathway requests GP practices share information on individuals flagged as having a learning disability with the bowel screening hub. This enables an offer of support to be given to each individual at the point of invite from the local community learning disability team.

People with a learning disability are less likely to take part in cancer screening and have high instances of gastrointestinal cancers. The bowel flagging pathway is helping to ensure they are able to make supported choices about participation in bowel screening which can lead to early diagnosis and treatment.


Best practice guidelines

Working in partnership with Gateshead People we developed Best Practice Guidelines to support the effective engagement of people with a learning disability in all our work.

Having people with a learning disability involved in the development of service improvements ensures changes are fit for purpose and support the needs of the population.

View Best Practice guidelines here

2016 - 18

Train the trainers – Good Bowel Health and Screening

The Good Bowel Health and Bowel Screening train the trainer’s project improved the ability of families and carers to support people with a learning disability in understanding good bowel health and the bowel cancer screening programme.

The project was developed through a partnership with Bowel Cancer UK and additional experts as required including individuals with learning disabilities.

The project trained 66 trainers giving the knowledge and resources to share training with; health professionals, colleagues, people with learning disabilities, families and carers.

2016 - 17

Breast screening flagging pathway and resources

In partnership with Inclusion North, experts by experience and regional breast screening units a pathway and easy read resources were produced to support screening units in offering reasonable adjustments to women with a learning disability.

The pathway enabled longer appointments, easy read invitation and information booklet and staff awareness of learning disability prior to appointment. Post appointment it enables easy read results and additional support for follow up if needed. The easy read resources were superseded in 2018 by PHE easy read updates.

2016 easy read breast screening regional booklet

National NHS breast screening easy guide

2016 - 19

Public Health England easy read materials for screening and immunisations

The Macmillan Cancer Learning Disability project and experts with experience from across the region supported Public Health England (PHE) in the development of National easy read screening and immunisation information booklets and invitation letters.

All the booklets developed are available through PHE.

2016 - 19

Cervical screening resources for sample takers

The cervical screening resources for sample takers working with women with a learning disability was developed in 2016 and has been regularly reviewed and updated to reflect changes in the programme.

Resources are specific to localities and include:

  • Capacity guidance: helping to increase a woman’s understanding of cervical screening
  • Advice on making a best interest decision
  • Easy read invite letter that could be used by the GP for third invite
  • Sample letter for parents and carers of women who are considering cervical screening
  • Sample letter for parents and carers of women who have not completed cervical screening
  • Top tips for administration and reception staff
  • Links to national easy read materials.


Conference – Working together to improve cancer services and experiences for people with a learning disability

Our conference in 2017 aimed to share experience and learning from a number of projects and work together to think about what else needed to be done and how we could work together to make change.

120 people attended the conference, funded by Macmillan and the Northern Cancer Alliance.

The conference included films sharing the experience from a health, social care and family/expert perspective.

Our Keynote speech is available on film and gives an example of how reasonable adjustments can be put on place to support a two week wait cancer referral.


Inpatient pathway for bowel cancer screening

People who live in both mental health and learning disability inpatient settings and are not registered with a GP, do not receive automatic invites for any adult screening programme.

Working in partnership with the Bowel Cancer Screening NE&Y Hub and taking learning from pathways developed for the prison estate, we have developed and tested a pathway and are now rolling it out throughout the two mental health trusts in our region.

View Inpatient FIT Bowel Screening Pathway here



Macmillan extend funding for 2 years

In 2018 Macmillan agreed funding for a further two years of the project.


Easy read electronic Holistic Needs Assessment consultation

The project worked with the national Macmillan team to help make the recovery package more accessible to people with a learning disability. We have been focusing on understand what people with a learning disabiltiy would want in an easy read electronic Holistic Needs Assessment (eHNA).

We ran focus groups to think about and eHNA and consulted 120 people looking at “images to represent words” and identifying peoples preferences.

All the information gathered is supporting Macmillan with the development stage of the easy read eHNA.

2018 - 20

Be Cancer Aware started

‘Be cancer aware’ is co-produced with people with a learning disability from 5 self-advocacy organisations from across the North East and Cumbria.

We developed a training course to help people learn about cancer. We then trained to deliver the course. We now deliver training within the community raising awareness of cancer.

Information is accessible and gives people the opportunity to ask questions and talk about cancer.

We use videos, role play, flash cards, stories and games.

The training gives information on: symptoms, what to do if you have a concern, what happens when you go to the GP/hospital, cancer risks, screening and where you can get support.

During early 2020 we trained 2 additional organisations to deliver Be Cancer Aware, increasing the reach of the project.

As services were locked down and face to face delivery of training became difficult we worked to develop alternative ways of sharing cancer awareness messages with the learning disability community developing a range of films. These are available through the Northern Cancer Alliance website.



General anaesthetic diagnostics pathway

The North East and Cumbria Learning Disability Network and Northern Cancer Alliance worked collaboratively to design and develop a reasonably adjusted care pathway for people with a learning disability who require general anaesthetic for diagnostic imaging.

This project was a reactionary piece of work after it emerged there was significant delay, variation and inequality across the region.


Public Health England Screening inequalities strategy – Supporting the health system to reduce inequalities in screening

The National PHE Screening inequalities strategy is aimed at supporting local screening services, commissioners and others involved in the provision of screening to address inequalities.

The project supported the development of the strategy and continues to support national screening inequality initiative raising awareness of the inequalities for people with a learning disability.

View NHS population screening: inequalities strategy here


2019 - 20

2 week wait easy read patient information leaflet and pathway

Working in partnership with the Northern Cancer Alliance we have developed and embedded easy read patient information leaflets to support primary care in providing reasonably adjusted resources for patients on a two week wait urgent referral pathway.

During, 2020 and the COVID 19 restrictions, the documents have been updated to reflect the changes in referrals and new guidance in hospitals.

View Patient Information Leaflets here


National Public Health England screening inequalities conference

At the 2019 Public Health England Screening Inequalities conference, the project delivered a learning and sharing workshop. The workshop was delivered by an expert by experience supported by the project lead.

As part of the workshop a number of projects nationally shared an overview of what they were doing to support people with a learning disability access cancer and non-cancer screening. These were captured and shared supporting the sharing of best practice and improving services for all.


Cancer screening – Social care resource pack

The social care providers guidance and resource pack provides tools for carers to enable them to support people with a learning disability to access cancer screening.

The resource was developed in partnership with; County Durham Learning Disability Health Facilitation Team (TEWV), CDDFT Learning Disability Acute Liaison Nurses, Learning Disability Community Integrated Team and Macmillan Primary Care Nurses.

View Promoting access to cancer screenings for people with a learning disability here

2019 - 20

Inpatient urgent cancer referral pathways

Working with the Northern Cancer Alliance and local mental health trusts we are developing an urgent cancer referral pathway for inpatients who do not have access to a GP. To find out more about this work contact [email protected]


Health Quality Checker pilot and resource packs for cancer screening

Working with Skills for People we have developed quality checker packs for breast and bowel screening services.

Health Quality Checkers are people with a learning disability employed by Quality Checking organisations to check local NHS or social care services.

The Health Quality Checkers use a check list, information collected from people with a learning disability and information gathered from service visits to check the quality of care and support.

They advise on how to improve the service to meet the needs of other people with a learning disability.

Due to the restriction of COVID 19 during 2020 we paused the piloting of materials. This will be progressed in winter 2020/21.


Targeted Lung Health Checks Pathway and resource design

Targeted lung health checks are currently being piloted in the Newcastle/Gateshead area, as part of a national programme. We have worked with the local team to development a support pathway that enables people with a learning disability to be offered support to understand information and make choices about accessing the service via the community learning disability team.

We have also worked with experts by experience locally to support the national programme to develop easy read materials.

For further information contact Lung Health Check project lead [email protected]


End of life pathway

Supporting referral routes for palliative and end of life patients.

Working with Clinical Commissioning Groups and community learning disability teams (CLDT) we are encouraging the referral of people flagged as end of life or palliative with a learning disability to the CLDT at the earliest opportunity. This ensures best possible care and support can be offered to the individual ensuring they understand information and are able to make choices regarding their care. Where individuals are not able to make decisions, best interest processes are supported.


Margaret’s Story

Margaret’s story is produced with the permission of Margaret Thornton, and support from St Benedict’s Hospice and the Sunderland Community Learning Disability team.

At the point of making the film Margaret was palliative, she agreed to share her story to help others learn from the journey she has taken.

Margaret has given us the opportunity to stop and think about how we can better support and work with people with a learning disability.

The film and resource pack are aimed at people working in: primary, secondary care, social care and third sector organisations who support individuals with a learning disability on specific disease pathways. Allowing them to think about their individual rolls within health or social care and how and when they offer support to individuals.



Support for people at the end of life or palliative

Working with the Northern Region Support and Palliative Care Network we are reviewing Deciding Right documentation and looking to develop easy read Emergency Health Care Plans and patient information leaflets.

View Deciding Right here


Virtual magnetic resonance imaging experience

Working with Newcastle City Hospitals and the Academic Health Science Network, the project has supported the development of a virtual reality (VR) experience to support children and adults to understand what happens during an MRI scan. The project aims to reduce the number of individuals who would need sedation to be able to have a scan enabling then to try a VR scan prior to their appointment.

This project is currently in testing phase.


Northern Cancer Alliance help us help you campaign

Following a drop in the number of people accessing GP services during the COVID-19 pandemic, the Northern Cancer Alliance has launched a campaign to encourage people across the region to contact their GP or nurse if they are concerned about signs or symptoms of cancer.

The Be Cancer Aware team have worked with the campaign to make a number of videos aimed at supporting people with a learning disability to understand symptoms.


Faecal immunochemical test for symptomatic patients

Working with the Northern Cancer Alliance we have developed a pathway and easy read material to support all individuals being referred for a FIT test as part of the symptomatic pathway.

The easy to understand instruction leaflet will be the standard document shared with all individuals accessing the pathway ensuring as many people as possible are able to confidently complete the FIT kit.


Future plans

The North East and Cumbria Learning Disability Network plan to continue the work of the Macmillan Cancer Learning Disability project past the end of Macmillan funding.

We are grateful for the support Macmillan have given us over the past four years in improving cancer services and experiences for people with a learning disability, families and carers.

We have seen great local, regional and national change and will continue to use our influence, knowledge and skills in partnership with our many professional colleagues and people with a learning disability to make further changes ensuring equity of access and experience to cancer services for people with a learning disability.

For information: [email protected]