Living With & Beyond Cancer York Teaching Hospital NHS Foundation Trust

The Cancer Story is Changing The impact of cancer often doesn’t end when treatment does Around half of those diagnosed with cancer today will live for at least 10 years

The survival rates are changing NHS Scarborough & Ryedale CCG - All Cancers It’s important to note that the cancer pathway and numbers of people surviving in each phase in this pathway varies greatly between different cancer types – this is a rough estimate of possible numbers and change for all cancers. We also know that the number of people who are at some stage of the pathway will grow to 4 million by 2030. This growth is partly due to more people being diagnosed per year, but mostly due to increased survival and life expectancy. Current time limited prevalence rates (i.e. 5yr, 10yr etc prevalence rates) suggest that long term survivors will continue to increase at a higher rate meaning that the number of people living with cancer more than 5 and 10 years after diagnosis will see a bigger increase

……Consequences of Cancer Treatment

350,000 will suffer chronic fatigue 350,000 some degree of sexual dysfunction 240,000 will have a mental health issue 200,000 report pain after treatment 150,000 have urinary problems or bowel incontinence (Macmillan Report 2013)

Macmillan Recovery Package Key Drivers Achieving World-Class Outcomes – A Strategy for England 2015-2020 Independent Cancer Taskforce 2015 The NHS Five Year Forward View – NHS England 2014 Use this slide to discuss the elements of the Recovery Package and describe them briefly: The recovery package consists of 4 key elements: Holistic Needs Assessment Treatment Summary to patient AND a GP / Cancer Care Review by GPs An education event such as Health and Wellbeing event that includes physical activity and lifestyle information Short description of the different elements of RP: - Holistic needs assessment (HNA) - identifies the individual needs of the person affected by cancer and contributes to a consultation. The consultation can then be focused on the needs identified, a care plan can be developed and an appropriate referral can be made to services. The patient receives a copy of the care plan to enable self management; further copies are stored in the medical records and can be sent to the GP. - Treatment summary - is developed by the multidisciplinary team to inform the patient and the GP of the care and treatment received.  The patient receives a copy to share with other family members and health care providers. Further copies are stored in the medical records and inform emergency/unplanned admissions.  - Cancer care review - is carried out by the GP practice within six months following a diagnosis of cancer and gives the patient information to enable self management. - Health and Wellbeing Clinics - are education events to give the person affected by cancer the holistic information they need to enable rehabilitation and self management.

Holistic Needs Assessment What is it? An assessment to identify a person’s concerns and needs.

Four Components Holistic Needs Assessment & Care Planning Treatment Summary Cancer Care Review Health and Wellbeing Events These elements form part of an overall support and self-management package for people affected by cancer

Holistic Needs Assessment Types of Tools available include: Distress Thermometer (DT) Concerns Check List Sheffield Profile for Assessment and Referral to Care (SPARC).

Concern(s) identified Description Plan of action Person who I look after Carer for my husband Comments: Discussed involving other family members and consider respite care during immediate post operative period. Referred to carers resource. Worry, fear or anxiety Worried about the operation Comments: Information sheet about the operation given and explained. Referred to the stoma care nurse for additional operative counselling Work or education Worried about being off work and being able to cover costs Comments: Recovery timescales discussed. Referred to Welfare and Benefits adviser. Constipation Comments: Increase fluids prescribed movicol PRN Tired, exhausted or fatigued Comments: Blood test shows anaemia, Iron Infusion prescribed.

Treatment Summary Produced by secondary care Provides information to the patient Provides an overview of treatment to GP- improving communication

Cancer Care Review Part of the Recovery Package roll out as described in the National Cancer Taskforce recommendations. Only part of the RP to sit within a Primary Care setting ( at the moment!) QOF – to be done within 6 months of diagnosis. To be a holistic assessment of need.

HCV Cancer Alliance – CCR pack

New SystmOne template

https://www. macmillan. org https://www.macmillan.org.uk/about-us/health-professionals/resources/resources-for-gps.html

Thoughts… How do you carry out a CCR? Opportunistically? Formal invite? Do you send out any information prior to the review? Who carries out your CCR? Do you patients know they have had one?! How do you feed the results back to secondary care if needed?

Health and Wellbeing Information Benefits and other financial support How to get back to work Diet and lifestyle Long-term side-effects of treatment Specific cancers Local services.

Health and Wellbeing Patients Health Care Provider Increased knowledge Increased confidence Peer Support May reduce anxiety May improve overall QOL Improved patient outcomes Earlier intervention Improved access to services

Stratified Follow-up Risk stratification is an approach to profiling patients following treatment for cancer that is based on their clinical and individual needs. Stratified follow-up promotes - Self-Management Providing information Highlighting risk of recurrence and symptoms For example 75-80% of breast cancer patients appear to be suitable for a supported self-management Low risk patients self management or primary care High risk patients more detailed follow up in Secondary Care before return to Primary Care

Resources https://www.macmillan.org.uk/about-us/health-professionals/resources/resources-for-gps.html Recovery Package Evidence toolkit https://www.macmillan.org.uk/aboutus/healthandsocialcareprofessionals/newsandupdates/macvoice/winter2013/sharinggoodpracticewinter2013.aspx

Contact Details Joan Meakins Macmillan GP Lead JMeakins@macmillan.org.uk Jackie Frazer Macmillan Lead Cancer Nurse Jacqueline.Frazer@york.nhs.uk Bianca Cipriano Macmillan Recovery Package Project Manager Bianca.Cipriano@york.nhs.uk Jenni Lawrence Macmillan Lead for Scarborough and Ryedale CCG Jennilawrence@nhs.net