Background and Context

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3 Background and Context People affected by cancer need information that is timely and relevant to enable them to make decisions. It can be difficult for patients and others affected by cancer to identify the most relevant information, unless they are offered some initial information and the opportunity to discuss this and to request more. In 2004, the National Audit Office found that nearly 40 per cent of cancer patients did not receive written cancer information. I had nothing until I joined [the support group] and I got the booklet. And then my wife read the booklet, and she said you ve had that, you ve had that, you can expect that (cancer patient) This finding inspired investment in a coordinated approach to cancer patient information in England.

4 Information Prescriptions Policy DH Policy initiatives: Initiated by : Our health, our care, our say (DH, 2006) DH Information Prescription Pilots ( ) NCAT Information Prescriptions Pilots ( ) Liberating the NHS: An Information Revolution (DH, 2010) Liberating the NHS: Greater Choice and Control (DH, 2010) Cancer specific policy initiatives: Cancer Reform Strategy (DH, 2007) Improving Outcomes: A strategy for cancer (DH, 2011)

5 National Cancer Information Pathways There is a huge range of patient information on cancer. The problem can be finding the most appropriate information to offer at the right time. To help health professionals and others to identify the information that is likely to be most relevant at a particular point in time, information pathways have been developed. Patient Information Pathways provide the main content on the Cancer Information Prescriptions.

6 Cancer Information Prescriptions Cancer Information Prescriptions are based on the national cancer patient information pathways. Once content has been selected from the information pathways, the output is an Information Prescription.

7 From pathway to personalisation

8 The Information Prescription Service (IPS)

9 Providing Information Prescriptions There are 3 steps to providing an Information Prescription: Prescribing - Talking with a patient or carer to assess and identify their information needs and suitable information materials Generating taking the information needs and turning them into a formal prescription Dispensing Providing the information identified

10 Benefits to Patients and Carers: Right information at the right time Empowered and informed patients Provides a structure to information giving Improved patient experience Improved communication Tailored to needs Help with co-ordination of care Help to reduce inappropriate admissions Anything else I want, I can get it when I go to my follow up appointment. (Cancer Patient)

11 Benefits to Staff Access to content Tailoring content What it has been useful for is that I now keep a record in the patient s notes and I have an audit trail. (CNS) Record keeping Communication

12 How could the IPS work for you? Your environment, resources and your patients will help determine how you can use the IPS Are you likely to be a prescriber, generator or a dispenser...or maybe all three? Could you use the system live or will you use it in preparation or hindsight?

13 Where do you go from here? Try it: Ask for help and utilise the support available Talk to other people about the IPS Contribute to national evaluation programme

14 Key Learning points People affected by cancer need information that is timely and relevant to enable them to make decisions. Information Prescriptions are a national initiative designed to improve patient information delivery In Cancer, Patient Information Pathways form the basis of the structure for content to be offered in Information Prescriptions. Information Prescriptions enable professionals to offer tailored information to patients. This information helps patients to make decisions or to access appropriate support.

15 Question time

16 Rehabilitation & End of Life Pathways National Cancer Rehabilitation Palliative Care & End of Life Bereavement Pathways Will be constructed on-line at the National Cancer Action Team Patient Experience website (

17 Pathway construction Phase: Information Providers can register and upload information to the relevant section of the pathway. If you have (or know of) any information which you feel should be on the pathway, please contact

18 Pathway Consultation Phase : Once the pathway is constructed (March/April) individuals will be able to view and comment on the content and overall pathway structure. An will be sent to you in March informing you of how you can take part in the consultation processs.

19 CANCER REHABILITATION-1 KIP-1 CANCER REHABILITATION SERVICES SYMPTOM MANAGEMEN T(KIP 2-13) PAGE 4 DAY TO DAY LIVING KIP PAGE-5 KIP-17 FINANCES & EMPLOYMENT KIP-18 FAMILY, FRIENDS KIP-19 DIET & LOSS OF APPETITE KIP-20 COMPLE- MENTARY THERAPIES FOLDER CONTENT: What is rehab? Dietetics (LINK) Occupational Therapy Physiotherapy Speech & Language Stoma Care Social Workers Chaplaincy MDT Lymphoedema Psychology & Counselling (LINK) FOLDER CONTENT 1.Finances & Benefits 2. Insurance 3. Wills & probate 4. Enduring power of attorney 5. Living Wills 4. Employmentlegals 5. Employmentleaving & returning to work FOLDER CONTENT 1.Talking to your family 2. Talking to your healthcare team 3. Respite 4.Childcare FOLDER CONTENT 1.Eating well & healthy living 2. Types of diets FOLDER CONTENT 1.General information 2. Individual therapies

20 CANCER REHABILITATION-2 KIP-21 EMOTIONAL & OTHER SUPPORT KIP-22 WHEN CANCER SPREADS KIP-23 CARING FOR SOMEONE WITH CANCER KIP-24 TREATMENTS & CLINICAL TRIALS KIP-25 BODY IMAGE LINKS TO INDIVIDUAL CANCER TYPES LINK to LIVING WITH CANCER PATHWAY FOLDER CONTENT 1.Emotional & psycho-logical support 2. Support Groups 3. Coping with cancer/advance d cancer FOLDER CONTENT 1.General Information (LINK) 2.When cancer returns 3. Feelings and Emotions (LINK) FOLDER CONTENT 1.General Information 2. Talking to the person you are caring for 3. Practical issues (e.g. handling, moving) FOLDER CONTENT 1.General Information 2. Clinical trials 3. Specific treatments FOLDER CONTENT 1.General Information 2. Hair loss 3. Other 4. Sources of support LINKS: Lung Breast Bowel Bladder etc LINKS from KIPS to individual cancers e.g. breathlessness to lung & all cancers where sec lung disease occurs

21 KIP2-12 SYMPTOM MANAGEMENT-MAPS KIP-2 Breathlessness KIP-8 Stoma care KIP-3 Lymphoedema KIP-9 Spinal cord compression KIP-4 Bowel and Bladder Problems (STOMA LINK) KIP-10 Swallowing problems KIP-5 Fatigue KIP-11 Pain KIP-6 Ascites KIP-12 Other symptoms Persistent cough Fungating wounds Delirium Peripheral neuropathy KIP-7 Cancer fistula KIP-13 Nausea and Vomiting

22 KIP Day to Day Living KIP-14 Speech and Communication (Link breathing stoma) KIP-15 Mouth Care KIP-16 Travel KIP-17 DAY to DAY LIVING-OTHER Mobility Memory and Cognition Looking after yourself Anxiety Agitation Restlessness Travel Insomnia

23 KIP-9 Spinal cord compression General information CONTENT: What it is, Signs and symptoms, Warning signs Treatments Movement & getting about CONTENT: Walking, day-to-day activities, driving, getting about LINK: Driving Pressure and skin care CONTENT: Pressure cushions/mattresses Tips for altered sensation LINK: Peripheral neuropathy Personal care CONTENT: Relationships & sex Transport and travel Toileting & continence LINK: SEXUALITY, TRAVEL, INCONTINENCE Emotions LINK: Emotions

24 KIP-10 Swallowing problems Signs and Symptoms & Assessment CONTENT: 1. Signs & Symptoms 2. Assessment (Speech & language therapist, nutritional assessment, Gastroenterology) 3. Assessment Tests (Fibreoptic Endoscopic Evaluation, Videofluoroscopy, Day to Day Swallowing Problems CONTENT: 1. Diet and Nutrition. 2. Modifying food & drink. 3. Swallowing strategies 4. Infections. 5. Saliva. 6. Coughing & choking. 7. Keeping hydrated LINK: Diet and Cancer LINK: Relevant cancers sites LINK: END OF LIFE Other ways of feeding CONTENT: 1.PEGS. 2. NG Tubes. 3. RIGS. TPN