Living with and Beyond Cancer West Midlands Strategic Clinical Network event 22nd January 2015 Sarah Crawford Thomas

Headlines 5 year survival for West Midlands 47-49% (England 48%) West Midlands prevalence of people living with cancer for more than 20 years in 2010 was 159,700 This is expected to increase to 310,300 by 2030, nearly 50 % increase UK figures estimate 4 million people living with and beyond cancer by 2030 ,up from 1.5 million

National Context NHS Five Year Forward view identifies cancer and recovery package . National Cancer Task Force Project linked into national work `Living with and Beyond Cancer Building on National Cancer Survivorship Initiative Living with and Beyond Cancer `Taking action to Improve outcomes `(2013) .

West Midlands project Mapping project commenced June 2014, mapping July – Oct 2014 Elements of NCSI Recovery Package mapped - treatment summaries, stratified follow up, health & well being events, self management & health needs assessment. Phase 1 Engaged with CCGs, Acute Trusts , Hospices and Third Sector and patient groups Semi structured interviews Formation of Expert Advisory Group Production of report March 2015 Need to understand the current cancer survivorship pathway within CCGs and how CCGs have built on NCSI initiative Elements Majority of elements identified within project were align to descriptors in NCSI toolkit . Self management more loosely aligned . This often was interpreted as advice and information and sign posting . Consequences of Treatment not mapped at this point

Clinical Commissioning Groups All 22 CCGs engaged with project and 19 submitted returns

Clinical Commissioning Groups

CCG findings

CCG findings

Acute Trust results 18 Trusts engaged Significant engagement with Third Sector such as Macmillan in survivorship work

Acute Trusts

There is a recognition that need to provide standard template that can be used across all tumour groups , Some Macmillan project work in this area to drive forward. No trust had a standard template that was used by all tumour groups Some templates used contained stages of treatment information which have been identified by GP `s as useful in managing survivors in primary care. Patient experience groups locally identified that this is area that they feel should be prioritised by trusts/CCGs

In addition to stable prostate ,there are examples of patient initiated follow up in place in Sandwell plus similar model for Gynae.- Sandwell. Pilot for Lower GI f/u in Wolverhampton .

Third sector Some Living Well & Beyond cancer support offered by Hospices Macmillan and Penny Brohn working jointly to look at delivering elements of recovery package across survivorship pathway in Staffordshire Prostate UK providing HWB, Counselling and support for survivors in some parts of West Midlands Response to feedback less than 50 % , not able to engage face to face 1 Hospice offering counselling through self referral

Next steps Work with stakeholders and EAG identified element/s of Recovery Package that require further support to embed in commissioning priorities Use task and finish groups to work on identified areas such as stratified follow up Share national and local evidence widely to enable ownership Support embedding of NHS England transformational plans Support development of service specifications for CCGs