Living Well After Cancer

Supporting Survivors in the East of England

 

A New Chapter in Cancer Care

Thanks to advances in early detection and treatment, more people than ever are surviving cancer. In the UK, over 3 million people are living with or beyond a cancer diagnosis — a number that continues to grow. As survival rates improve, the focus is shifting toward life after treatment: ensuring survivors not only live, but live well.

 

 

Understanding Late Effects

Cancer treatment can be lifesaving, but it often comes with long-term consequences. Late effects are side effects that appear months or even years after treatment ends. These can vary widely and may include:

 

  • Physical: fatigue, pain, infertility, heart/lung issues, bowel/bladder changes
  • Cognitive: memory and concentration difficulties (“chemo brain”)
  • Psychological: anxiety, depression, sleep problems, fear of recurrence
  • Long-term risks: secondary cancers, osteoporosis

 

More than 50% of cancer survivors are estimated to experience at least one late effect.

 

Why It Matters

Late effects can impact daily life, emotional wellbeing, relationships, and the ability to return to work or education. Yet they are often under-recognised and poorly understood.

 

Timely identification and personalised care can:

  • Improve quality of life
  • Reduce long-term complications
  • Empower survivors to take control of their recovery

 

Cancer survivorship is about more than being disease-free — it’s about restoring health, purpose, and confidence.

 

 

Who Is This Resource For?

  • Patients and survivors: to understand what to expect and when to seek help
  • Carers and families: to support loved ones with confidence
  • Healthcare professionals: to access guidance and promote best practice

 

Supporting Survivors: Our Approach

We believe people deserve to thrive, not just survive. That’s why we’re committed to:

 

  • Sharing knowledge about common late effects and how to manage them
  • Encouraging personalised survivorship care plans
  • Promoting multidisciplinary care across primary and specialist teams
  • Empowering self-management and recovery
  • Providing trusted resources and signposting to specialist services

 

East of England Late Effects Pilot

The East of England Cancer Alliance funded a 2-year pilot (April 2023–March 2026) based at Norfolk and Norwich University Hospitals NHS Foundation Trust (NNUHFT). The pilot aims to:

 

  • Inform patients and GPs about late effects and how to access support
  • Build a community of practice for late effects management
  • Develop a Regional Late Effects MDT for complex cases
  • Create streamlined referral pathways and proactive care models
  • Engage specialist teams across the region
  • Launch a dedicated Late Effects Clinic for referrals
  • Produce detailed patient and GP information sheets
  • Deliver education initiatives and advice access for primary care
  • Communicate effectively with GPs and community cancer teams
  • Address unmet needs and ensure equitable access
  • Co-design a cost-effective service blueprint for national adoption

 

Progress and Expansion

Progress of the pilot is captured in the Norfolk and Norwich Late Effects Service tab below. Additional Late Effects Services are being developed across the region — explore the tabs below for updates and opportunities to get involved.

 

 

 

Further Support & Resources

Late Effects of Cancer Treatment

 

Pelvic Radiation Disease Association (PRDA) and Society of Radiographers Special Interest Group:

  • List of UK late effects services (mainly pelvic): Available here
  • Pelvic Radiation Disease (PRD) Best Practice Pathway: Download PDF
  • Society of Radiographers Special Interest Group (SOR members only): Join here

 

Educational Links

  • Advanced Clinical Communication Skills – Accessed locally
  • Personalised Care and Supported Self-Management for Those Affected by Cancer (SHU MSC 15 credit module): View Module
  • The Christie Study Days: View Events
  • The Royal Marsden Study Days (including gastrointestinal consequences of cancer treatment): View Events
  • The Institute of Psychosexual Medicine (IPM) Training: View Training

 

Macmillan and Radiotherapy UK Links

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🧑‍⚕️ East of England Regional Late Effects MDT

A Collaborative Approach to Complex Cancer Aftercare

 

The EoE Regional Late Effects MDT has proven to be an invaluable resource for healthcare professionals supporting patients with long-term effects of cancer treatment. This multidisciplinary team (MDT) brings together experts from across the region to discuss complex cases and provide tailored management advice.

 

 


🧩 Holistic, Expert-Led Care

Each patient case is reviewed in detail by a panel of specialists, ensuring a holistic and personalised approach to care. The MDT includes professionals from may East of England Trusts reflecting a broad and growing commitmen to collaborative care including:

  • Consultants in Palliative Medicine, Oncology, Endocrinology, Gynaecology and Gastroenterology
  • Therapeutic Radiographers
  • Clinical Nurse Specialists (CNSs)
  • Physiotheralists

 

 

📈 Proven Impact

The MDT has been described as extremely effective for both learning and care planning. Attendance continues to grow, and feedback from teams has been overwhelmingly positive.

“The MDTs have been invaluable in supporting patients with complex late effects. The shared expertise and collaborative decision-making have significantly improved care outcomes.”

 

 

🩺 MDT Case Study: Holistic Management of Pelvic Radiation Disease

 

Patient Background

A 58-year-old patient previously treated for rectal cancer presented with persistent gastrointestinal symptoms, fatigue, and emotional distress. Despite completing treatment over a year ago, the patient continued to experience debilitating late effects impacting daily life.

 

Key Considerations

  • Complex symptom profile requiring input from multiple specialties.
  • Psychosocial impact identified as a significant factor.
  • Need for coordinated care across primary and secondary care services.

 

MDT Discussion: Outcome & Recommendations

  • Referral to a specialist gastroenterology clinic for symptom management.
  • Psychosexual counselling recommended.
  • Personalised care plan developed with input from CNS and palliative care.
  • Patient provided with educational resources and self-management tools.

“The MDT’s collaborative approach ensured the patient received comprehensive, tailored support—addressing both physical and emotional needs.”


 

🔄 Looking Ahead

Given its success, all participating representatives are keen to continue the Late Effects MDT beyond the pilot phase, ensuring sustained support for patients and ongoing professional development.

 

East of England Regional Late Effects MDT

If you would like to know more about the East of England Regional Late Effects MDT, please contact:

📧 radiotherapylateeffects@nnuh.nhs.uk


 

Join the MDT

We welcome expressions of interest from Clinicians and Health Care Professionals who would like to become members of the MDT.


 

Referrals

All East of England Foundation Trusts are encouraged to refer any patients with late effect symptoms for discussion.

Late Effects Community of Practice (LE CoP)

 

Supporting Cancer Survivors Through Collaborative Care

 

Overview

The Late Effects Community of Practice (LE CoP) was established in response to findings from a baseline mapping exercise in the East of England, which highlighted the inconsistent and underdeveloped nature of late effects (LE) services for cancer survivors across the UK. The CoP aims to collaboratively address these gaps by enhancing service provision, training, and awareness.

 

Purpose

To create a national platform for sharing expertise, identifying service gaps, and developing a standardised approach to managing late effects of cancer treatment.

 

Key Objectives

  • Expand LE expertise across Integrated Care Systems.
  • Share best practices and lessons learned from existing LE services.
  • Recommend a clinical model for effective LE service delivery.

 

Strategic Focus Areas

1. Data and Evidence

  • Utilise existing datasets (QoL, eHNA, NCPES).
  • Pool data to identify unmet needs and standardise outcome measures.
  • Recommend a unified LE System Tool for consistent data collection.

2. Service Development

  • Map current service provision to identify best practices and gaps.
  • Test and define clinical models that exemplify effective LE care.

3. Training and Education

  • Develop a central repository for LE training resources.
  • Create bespoke training to address knowledge gaps.
  • Raise awareness among healthcare professionals and patients.

 

Proposed Outputs

  • Data & Evidence: Build the case for change using data.
  • Clinical Model: Define best practice pathways and service models.
  • Training & Awareness: Enhance knowledge and develop educational resources.
  • A comprehensive LE Prospectus and adaptable business case.
  • Engagement with national and regional networks.
  • Clear evidence to support long-term service development.

 

Influencing Factors

  • NHS guidance and strategic programmes (LTP, PSFU, QoL, LWBC).
  • Input from cancer charities and patient advocacy groups.
  • Collaboration with radiotherapy networks and informatics teams.

 

Timeline

  • Development of a business case to support ongoing delivery of Late Effect Services – 2024 / 2025
  • Creation of a central repository for sharing of resources, data and information – 2024 / 2025
  • Educational face to face event – 14 November 2025

 

 

NNUHFT Late Effects Service Programme

Position Statement (March 2025)

Overview:

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The Late Effects Service (LES) pilot programme, led by Lara Anthony, Late Effects Service Lead - Advanced Therapeautic Radiographer (NNUHFT), Gini Melesi, Head of Cancer Programmes (East of England Cancer Alliance) and Lisa Motley, Programme Manager (East of England Cancer Alliance), was initially funded for two years (April 2023 – March 2025) by the East of England Cancer Alliance, with an additional year granted (April 2025 – March 2026). The programme aims to enhance patient experience and outcomes through specialised care for late effects of cancer treatment.

 

Key Achievements:

  • Draft business case developed demonstrating patient experience benefits.

  • Outreach clinic established at JPUH; discussions underway for QEHKL clinic.

  • Regional Late Effects MDT and Community of Practice facilitated.

  • Feasibility study initiated for integrating Electronic Patient Reported Outcomes (EPROs) via the Noona platform.

 

Patient Feedback:

  • Only 12% of patients were aware of late effects prior to clinic visits.

  • 95% felt they had sufficient time with the care team.

  • 100% would recommend the service.

  • 90% rated the service 5/5; 10% rated it 4/5.

  • Narrative feedback emphasized empathy, support, efficiency, reassurance, and communication.

 

Next Steps:

  • Refresh project team structure, membership, and objectives.

  • Enhance training, education, and awareness through strategic communication and capacity planning.

  • Evaluate EPROs implementation and demonstrate ROI to support continued investment.

 

Proposed Outputs:

  • Robust data collection to evidence LES impact.

  • Regional engagement to raise awareness.

  • Showcase benefits of MDT and EPROs.

  • Development of a comprehensive LES business case.

 

Resources & Support:

  • Continued pilot funding and core project team.

  • Membership in EoE CA EPROs Programme Team.

  • Support from Trusts, ICBs, and radiotherapy services.

 

Timeline:

  • April 2025: Programme refresh.

  • October 2025: Updated business case with expanded outputs and case studies to request ongoing funding when pilot funding ceases. 

 

NNUHFT Website Links:

Living well beyond pelvic cancer treatment

Our Late Effects Service at ESNEFT ( East Suffolk and North Essex Foundation Trust ) is dedicated to supporting patients from North Essex and East Suffolk who are living with symptoms after treatment for pelvic cancer. Delivered from our Ipswich and Colchester hospital sites, this service is designed to support patients in managing the late effects and improve their daily life.

We recognise that the journey doesn't end with treatment. This service, which has been built over the last year, aims to provide specialised support for the physical and emotional consequences patients may be experiencing.

Accessing our support

Currently, referrals are made by a patients Cancer Nurse Specialist or Support Worker. We are developing our referral pathway to ensure it is as effective and accessible as possible. In the meantime, if you have concerns, please speak with your CNS or Support Worker for guidance.

For further advice, please visit the Radiotherapy Department sections of the ESNEFT website for Colchester and Ipswich.

Mid and South Essex NHS Foundation Trust (MSE), in collaboration with the East of England Cancer Alliance, is launching a late effects clinic at Southend Hospital. This initiative is designed to support patients who have undergone radiotherapy for Head and Neck cancer, with a focus on improving long-term quality of life through a streamlined and effective clinical service. Thanks to funding from the Cancer Alliance, this pilot programme aims to demonstrate how a radiographer-led model can enhance patient outcomes and deliver holistic, patient-centred care.

 

👨‍⚕️ Meet Our Lead Therapeutic Radiographer: Naman Julka-Anderson Starting in January 2026,

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Naman Julka-Anderson will lead the design, implementation, and delivery of the new service. Naman qualified as a therapeutic radiographer in 2017 and currently works at an advanced practice level in research at The Royal Marsden Hospital and the Institute of Cancer Research (ICR). He also serves as a clinical advisor for Macmillan Cancer Support and is the co-founder of Rad Chat, a multi-award-winning podcast and education platform for oncology professionals.

Naman’s vision is to create a comprehensive care model that supports patients from the moment they consent to treatment through to the onset and management of late effects. By mapping existing services and identifying gaps, the clinic will offer tailored support that reflects the full spectrum of patient needs.