APPG Meeting: Improving diagnosis and management of pancreatic cancer

The new NICE Guideline for pancreatic cancer: the start of a journey for improving diagnosis and management of pancreatic cancer.

The APPG for Pancreatic Cancer met on the 20th March 2018 to discuss the implementation of the first ever NICE guideline for the management of pancreatic cancer in adults.

An image of the APPG for pancreatic cancer sat at a conference table

The purpose of the guideline is to improve the diagnosis of pancreatic cancer and ensure that patients receive the most appropriate treatment for their case. The meeting was well attended by MPs, patient groups and other stakeholders.

At the meeting, we heard from the following speakers:

  • Professor John Primrose, University of Southampton NHS Foundation Trust and Chair of the NICE pancreatic guidelines committee.
  • Lesley Goodburn, lay member of the NICE pancreatic cancer guideline committee.
  • Robin Hewings, Head of Policy at Diabetes UK.
  • Professor Bill Noble, Sheffield Hallam University, Executive Director at Marie Curie.

The potential impact of the NICE Guideline

Enhanced Scans

Professor John Primrose was the first to speak. One of the key recommendations that he highlighted was the introduction of enhanced scans to ensure that patients receive a quicker and more accurate diagnosis.

An image of a speaker at the APPG for the NICE guidelines of the management of pancreatic cancer adult patients

It is believed that implementation of more enhanced scans would have the following benefits:

  • It would speed up surgical treatments for those who are fit ensuring that they are operated on at the earliest opportunity.
  • Prevent surgery being carried out on patients who would be more suited to other treatments.

The two type of enhanced scans that are recommended in the NICE guidelines are:

  1. A PET-CT scan combines a CT scan and a PET scan. It gives detailed information about your cancer. The CT scan takes a series of x-rays all around a patient’s body while the PET scan uses a mildly radioactive drug to show up areas of the body where cells are more active than normal.
  2. An endoscopic ultrasound (EUS) involves the insertion of a thin tube into the body that emits sound waves which can help determine the size and location of the tumour and whether it has spread to other areas of the body. During the procedure, tissue samples can be obtained which can later be analysed under a microscope.

The barrier to implementation, however, is the fact that PET CT-Scanners are not widely available in the NHS as most scanners are owned by private companies, while Endoscopic Ultrasounds are deemed to be ‘so complex’ that staff would need more training.

It is clear the successful implementation of this recommendation would not be possible without improving access to scanning equipment and training staff.


An image of a head and an apple that represent psychological and nutritional treatments for pancreatic cancer

Psychological and Nutritional Support

Lay member Lesley Goodburn spoke about the importance of psychological care during cancer treatment, citing research that has shown how psychological support can have an impact on reducing cancer pain.

Gastroenterologist, Professor Andrew Hart said that he found the guideline extremely helpful, particularly the psychological and nutritional recommendations. He claimed that gastroenterologists will often see a patient at the beginning of their care pathway so suggested that it is an audience that would be able to help implement some of the recommendations. Professor Primrose agreed that this is an important audience to target but the challenge is finding gastroenterologists with an interest in pancreatic cancer.

The impact of the NICE Guideline for other organisations


An image of a speaker at the APPG on the NICE guidelines for pancreatic cancer treatments for adults

It was interesting to hear from Diabetes UK and Marie Curie UK about the impact NICE guidelines have had on their communities.

Robin Hewings, Head of Policy at Diabetes UK, shared how the charity has used the guidelines to facilitate change.

He highlighted five key areas of how the guideline informed improvements to diabetes care in the UK:

  1. Local decision-making including the delivery of education programmes across the UK.
  2. It has informed the use of the QOF incentive programme for GPs to offer best practice when it comes to diabetes care.
  3. It has served as a basis for the formation of a rich-set audit to monitor delivery of diabetes care and service. There are about 9 to 10 different audits for diabetes.
  4. It has helped them look at the different ways to provide services to patients
  5. It provides a consensus view for the development of services and information such as the development of 15 healthcare essentials leaflet for patients: things you may need to manage your diabetes. 


Robin said, the NICE Guideline was the foundation stone for improvement in diabetes care in the UK.  He added that consistency and consensus helps the system work better.


Professor Bill Noble from Marie Curie UK believes that NICE guidelines are only as good as the commissioning, implementation and the scientific evidence that supports them.  He said with palliative care there has been an element of ‘policy fatigue’ and the implementation of the guideline has not been audited or monitored, which makes it difficult to assess the success of it.

An image of a question mark - what needs to be done after the APPG?

What we need to do now?

In order for the NICE guidelines for pancreatic cancer to be successful, we must push for the following:

  • Acceptance of the guidance in clinical practice and a desire to use it.
  • A similar commitment from the NHS.
  • Appropriate systems, sufficient resources and training to support the implementation of the guidance.
  • Guidance that is both credible and robust.
  • The effective dissemination of that guidance to the NHS, patients and carers.

We also need an audit to understand where best practice is happening so we can emulate this across the UK improving standards and outcomes for patients.   An evidence-based audit will help identify gaps and support the recommendations in the guideline.

While NICE can help inform standardisation of care and services, we must ensure that it is not be translated into non-individualised care. One of the initiatives that will support the development of a personalised care plan for patients is the outcome of the the Precision-Panc study for pancreatic cancer. The overall aim of this research study, which is being funded by Cancer Research UK, is to improve the outcomes of patients with pancreatic cancer by studying the makeup of the cancer in order to find out what the most effective treatment for each individual patient might be.

Going forward

The new guideline will take time to manifest, but the APPG meeting highlighted that the guidelines are relevant and that the need for improved diagnosis and management of pancreatic cancer exists.

This is the start of our journey to ensure that they are implemented across the UK.

The next step should be a commitment to meeting or agreeing on an action plan involving all relevant groups with a collective aim.

To find out more about the NICE guidelines for pancreatic cancer, click here.