National Cancer Action Team

The National Cancer Information Prescriptions Programme

Cancer can be a complex, frightening and confusing disease to understand. Despite this, people affected by cancer are like anyone else; they want to be able to understand their situation and have a sense of control over their lives. Patients who are well-informed, experience less anxiety, take a greater part in their healthcare plan, and are better equipped to cope with their illness than those who are ill-informed or uninformed.

To ensure consistency in the information a patient receives, the National Cancer Information Prescriptions Programme has constructed over fifty National Information Pathways, using content supplied by a range of Information Providers. By the end of 2011, in over forty Trusts in England people affected by cancer should be able to receive information about all aspects of their disease. To ensure consistency in the delivery of information and information is never out of date, the National Cancer Action Team is working with Macmillan Cancer Support, Cancer Research UK and NHS Choices to:

• Develop a web based Information Prescription Delivery Service (IPS). The IPS houses each Information Pathway, and allows Health Care Professionals to select information, relevant to their patient, and construct an Information Prescription (IP) that is tailored to their needs.
• Ensure personalised information becomes an integral part of how cancer treatment and care is delivered, an Implementation Team is working with Trusts locally, embedding this through learning and development with healthcare professionals in the provision of personalised information 'prescriptions' to people affected by cancer.
• The National Cancer Information Prescriptions Programme is rolling out in four main stages, between December 2010 to November 2012, to fifteen Beacon Sites, and up to thirty acute Trusts in Wave 1, Wave 2 and Wave 3.

Partnership Working

Implementing the National Cancer Information Prescriptions Programme involves partnership working. As such, the National Cancer Action Team is working in partnership with Macmillan Cancer Support, Cancer Research UK and the Department of Health. It is also reliant on over fifty charities providing content for the pathways and developing their resources to ensure the information the IPS contains, can be personalised to an individuals needs.

Offered by health and social care professionals, Information Prescriptions aims to ensure patients and their carers are consistently informed and, where appropriate, signposted to further information and advice to help them take care of their own condition.

If you are interested in creating your own Information Prescription, here is the link to the NHS Choices website: http://www.nhs.uk/ipg/Pages/IPStart.aspx

The National Cancer Information Prescriptions Implementation Team:

Has already implemented the Information Prescriptions Programme with 15 Beacon Sites, from December 2010, to July 2011. The Beacon sites have made significant strides in the delivery of personalised information to people affected by cancer.

• Over a thousand NHS staff have participated in training to support the delivery of Information Prescriptions;
• Over half of the multi-disciplinary teams across the 15 Beacon Sites are routinely issuing Information Prescriptions to some of their patients, and using a tailored approach so that implementation is focused around the priorities of the trust.

The National Cancer Information Prescriptions Programme has just completed working with Wave 1 and is now implementing Information Prescriptions with another 30 Trusts across England, in Wave 2, building upon the successes and challenges which have already been achieved in providing cancer patients with high quality written information from the Beacon and Wave 1 sites.

The Implementation Team has developed a national 'Information Prescriptions Implementation Toolkit', which was launched in August 2011. This provides the step by step process to implementing Cancer Information Prescriptions through useful tools, templates, guidance and information.

The Implementation Team have also developed signposting cards for patients to access their own information prescription through the NHS Choices IPS.

The Annual Review:

The National Cancer Information Prescriptions Programme, has published an Annual Review, looking at the first twelve months of a two-year programme, providing national support for local implementation of cancer Information Prescriptions in acute Trusts in England.

The Annual Review concludes with recommendations for the Programme in the second year of its operation and for the longer-term future of Information Prescriptions. A pdf version is available in the documents section of this website.

The Evaluation of the Information Prescriptions Programme:

Funded by Cancer Research UK, Quality Health are evaluating the impact of Information Prescriptions on the experience of cancer patients. The evaluation has four main objectives:

Objective 1: Evaluate the extent to which all cancer patients are offered an information prescription, using quantitative methods to measure coverage of the implementation across trusts involved in the programme.

Objective 2: To assess the effectiveness of the roll-out of the implementation, from the experiences of healthcare professionals and carers implementing the programme.

Objective 3: To review the impact and benefits of cancer information prescriptions on patients' experience of care, through an Outpatient Information Survey, the question set is based on the National Cancer Patient Experience Survey.

Objective 4: To evaluate usage of the cancer Information Prescription System and to understand which content is used and why, through the analysis of usage data from NHS Choices and feedback from patients and healthcare professionals. The first annual review on content usage will be published in spring 2012.

Chunked Content:

Short sections of text ('chunked' content) have been added to the bowel, breast, cervix, lung, prostate, stomach, vagina, vulva and womb cancer patient information pathways. The chunked content enables healthcare professionals to create bespoke factsheets for their patients by selecting items of text into a document.

Cancer Research UK and Macmillan Cancer Support have been developing further chunks to complete the tumour groups above, and in response to feedback from patients and Trusts. The following content for the tumour sites are:

• anal
• oesophageal
• pancreatic
• laryngeal
• primary liver cancer
• testicular
• penile
• thyroid
• mouth and oropharynx cancer

Learning and Development

These come in a variety of delivery models, many of which are included in the new Information Prescriptions Implementation Toolkit, including:

• A lesson plan for face to face workshops;
• Self directed learning via an IP workbook;
• E-learning, currently available via the Macmillan Learnzone participants need to register an account before they can access the programme; for example handouts, case studies, flow charts;
• Skills for Health, ESR OLMS (Electronic Staff Record On-Line Learning and Management System), http://www.esrsupport.co.uk/nlms/;
• The toolkit has roles and responsibilities of the Implementation Prescriptions Trust Trainers and Training Action Plans.

Using video as well as written information to help inform patients

Videos are another great way of helping patients to understand more about cancer care. Below are links to a couple of great vidoes produced by Lynn Faulds-Wood on:

colonoscopy: http://www.youtube.com/watch?NR=1&v=UwjaARY5L1k

flexible sigmoidoscopy: http://www.youtube.com/watch?NR=1&v=VBpj0eUs9JA

Whats next for 2012?

April 2012, the Annual Review is now published: this report reviews the activity of the National Cancer Information Prescriptions Programmes first twelve months of a two-year programme, providing national support for local implementation of cancer Information Prescriptions. Download a copy from the documents section on this website.

May 2012, Wave 3 Cohort Event: Wave 3 of the programme will start in June 2012, and the Information Prescriptions Programme will be holding a Cohort Event in May for Trusts who will be participating in Wave 3 and to show case the Beacon, Wave 1 and 2 Trusts successes and learning.

May 2012, Publishing the updated Learning and Development Resources: Currently the Programme is working alongside our partners, Macmillan Cancer Support to update the e-learning modules and IP workbooks.

May 2012, the IP Programme attends the RCN Congress: The RCN Congress and Exhibition is being held 14 - 16 May this year, at the Harrogate International Centre, Harrogate. The Information Prescriptions Programme will have a stand at the event, promoting the IP Programme, success stories from the Beacon and Wave Trusts, also demonstrating the Information Prescription Service to new audiences.

June 2012, Publishing Video Case Studies: The Implementation Team have developed signposting cards for patients to access their own information prescription through the NHS Choices IPS and later in the year will be embarking on the production of video case studies to support the National Cancer Information Prescriptions Programme and learning and development activities.

December 2012, Publishing the Cancer Outpatient Information Survey Report: The Survey will cover Trusts who are involved in Wave 1 and Wave 2. The timeline for the pre and post Wave surveys and for finalising and publishing the report and data are:

• June - August 2011: Period during which patients qualify for inclusion in samples.
• November - December 2011: Trusts send data to Quality Health under the S251 authorisation.
• January - March 2012: Fieldwork, surveys sent to patients.
• March - April 2012: Data analysis and reports.
• June - July 2012: Patients qualify for inclusion in survey sample.
• September 2012: Trusts send data to Quality Health.
• October - November 2012: Surveys sent to patients.
• December 2012: Final Evaluation Report published.