The Cancer52 All Members Meeting took place on Wednesday 16th October with updates from David Fitzgerald, National Cancer Programme Director at NHS England about the NHS Long Term Plan, and Lizzie Thomas and Heidi Livingstone about the NICE reviews of methods and processes. Sharon Kell represented KCSN at the meeting:

Jane Lyons, CEO from Cancer52 opened the meeting with a description of Cancer52 members and some information about rare and less common cancers. She went on to highlight Cancer52 involvement in various NHS England initiatives, such as:

  • Members of the National Cancer Board
  • Members of the charity-led Charity Forum
  • Represented on Task and Finish Groups for Rapid Diagnostic Centres, early detection, cancer workforce, and Cancer Patient Experience Survey for adults and children
  • Working with 19x Cancer Alliances across the country.


Cancer52 strategic objectives are to:

  • Ensure the NHS remains focussed on improving outcomes for rare and less common cancers
  • Ensure recording of rare and less common cancers in the early diagnosis target (diagnosis of 75% of all cancers at stage 1 or 2) by 2028
  • Help people with rare and less common cancer access suitable treatment
  • Review and publish reports on research spending for rare and less common cancers by 2020
  • Increase/target spend and activity on research into rare and less common cancers by 2022
  • Raise awareness of rare and less common cancers among the general public and other stakeholders by the end of 2021.


The following briefing documents were distributed at the meeting:

Getting a better deal for people with rare and less common cancers: The next ten years

Getting a better deal for people with rare and less common cancers: What we can learn from patients

NHS Long Term Plan update

David gave an update on the progress of the NHS Long Term Plan with respect to cancer, which was initiated in January 2019. The ambitions of the NHS Long Term Plan are to:

  • Ensure an extra 55,000 people will survive for 5 years or more following their cancer diagnosis
  • Ensure 75% of cancers are diagnosed in the early stages (stage 1 or 2) by 2028.


The NHS aims to deliver the Long Term Plan in a way that improves quality of life outcomes and patient experience, and reduces variation and inequalities.

The early diagnosis target is very ambitious – currently around 54% of cancers are diagnosed in stage 1/2 and while survival rates have risen, the NHS still lags behind the best in Europe.

To meet the ambitions of the NHS Long Term Plan, the NHS plans to:

  • Deliver the most comprehensive screening programme in the world
  • Ensure equitable and fast access to diagnostic tests and results
  • Provider faster, safer and more precise treatments
  • Offer personalised care for all patients and transform follow-up care
  • Harness the collaboration of academia, the NHS and industry.


To help meet the ambitions of the Long Term Plan, the NHS has introduced a new Cancer Charity Board and is involving cancer charities in Task and Finish groups and the National Cancer Board. Cancer52 is also working with the 19x Cancer Alliances, which are leading the delivery of the Long Term Plan across the country. Cancer Alliances are working with Integrated Care Systems and System Transformation Partnerships to provide clinical, operational and transformational leadership for the cancer work stream.

David then spoke about how the NHS is turning the Long Term Plan into reality:

  • Rapid Diagnostic Centres are being rolled out from 2019 so that patients can be diagnosed more accurately and quickly using the latest diagnostic equipment, expertise and specialisms
  • The faster diagnostic standard of diagnosis/ruling out of cancer within 28 days will be fully implemented by April 2020 and supported by the new cancer waiting time system
  • Service specifications and quality improvements for early diagnosis for primary care networks is to be introduced in 2020/21
  • Improvements to service specifications for children and teenagers/young adults services is under review
  • Targeted lung health check programme is operational in 10 areas with highest death rates from lung cancer, and will be rolled-out more widely after evaluation
  • Personalised care interventions and transforming follow-up, starting with the roll-out of stratified follow-up for breast cancer in 2019
  • Use of data to track early diagnosis ambition and emergency presentations. Data for this will come from the Get Data Out programme and the blood cancer dashboard.


These ambitions require investment in the NHS workforce to become reality – this is ongoing and the NHS workforce grew 3.2% in the past year.

Priorities for the NHS moving forward are:

  • Delivery of the Long Term Plan
  • Development and roll-out of five year plans
  • Clinical review of standards and an increasing focus on operational performance.

See David Fitzgerald’s slides here

Update of NICE review of processes and methods

Lizzie spoke about the recent review of NICE methods and processes, which has been ongoing since January 2019. Methods are the way in which evidence is collected and considered in forming guidance. Processes are the steps taken at different stages of assessment.

During this review, NICE methods and processes are being tweaked (not completely re-written) to account for the changing landscape, needs and technologies, to simplify multiple guides, addenda and supporting documents, and to learn from past lessons. Methods and processes will be aligned for Health Technology Assessment (HTA) for all innovative technologies.

A steering group composed of NICE, NHS England, Department of Health and Social Care (DHSC) and an independent adviser is steering the review and policy alignment by a manual working group, a process working group and a methods working group. Task and Finish Groups focussed on specific method issues include patients, NICE, industry and academic representatives.

There are a number of process ares for review, such as scheduling and planning, evidence submission, committee meetings and the appeal process. Methods areas for review include costs used in HTAs, equality considerations, sequencing of technologies and health-related quality of life.

The methods working group and the Task and Finish Groups will assess the case for changing the methods. These groups include 3 members from patient organisations, and overlap with the patient involvement group. They will have their first meeting this month (October 2019). Cancer52 has representation on the Task and Finish Groups for Rapid Diagnostic Centres, early detection, cancer workforce, and Cancer Patient Experience Survey for adults and children.

The Stakeholder Insight Group provides key insight on processes, tests and provides feedback on potential new process proposals, and develops solutions that work for both NICE and stakeholders. This group consists of people from NICE committees, patient organisations, academia, professional groups, DHSC, and NHS England.

Heidi then spoke about patient and public involvement in the NICE HTAs. The aim is to co-design realistic options for changes to NICE’s public involvement in HTAs (technology appraisals, highly specialised technologies, diagnostics, medical technologies). The proposals will be fed into the wider methods and processes review for consideration. Viable options will form part of the public consultation on new methods and processes.

A working group involving NICE staff, members of patient organisations and patient experts. They had a workshop in January involving 22 patient organisations and patient experts. An early engagement survey was conducted over 4 weeks earlier in the year and received responses from 52 patient organisations. Three main themes came out of the survey:

  • Overall perceptions on engagement for patient organisations and patient experts, including more explanation of processes, especially appeals, explore ways of including patients, clarity and consistency on stakeholder involvement and clearer consultation document
  • Incorporating the patient voice into NICE methods and processes, including how and when the patient voice is included in the committee, additional ways to include patients, help with technical engagement, and support navigating committee documents
  • Training and support needs for patient organisations, patient experts and committees, including training around economic modelling, explanation of how the committee reached its decision, more support for submissions, and case studies and examples of previous submissions.


The next steps are to finalise the recommendations and proposals from the working group, produce a report and feed this into the NICE methods and process review. The Stakeholder Insight Group for review of processes will be meeting regularly between November 2019 and December 2020 and the methods working group(s) have already started holding workshops and webinars to review methods. This will continue until summer 2020 when there will be a consultation on the proposed changes before they are implemented between December 2020 and March 2021.

See the NICE slides here

If you would like to be involved in the review of NICE methods and processes, please let us know by writing to us at