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Making the Changes that Matter LCA Survivorship Forum 1st May 2014 Welcome and Overview of the afternoon Survivorship Pathway update: Progress and Plans Nicola Glover Survivorship Project Manager The London Cancer Alliance West and South LCA Survivorship Group: The story so far (2013/4) • Group set up, including three communities of practice • Engagement – – – – Provider level Clinical Fora With other pathways Pan-London including with commissioners • HNA tool • Treatment summary agreement • Metrics The London Cancer Alliance West and South The story so far (continued) • • • • • • • • Survivorship service mapping Lymphoedema service mapping Lymphoedema specialist education mapping Complementary therapies guidelines developed Consequence of cancer position statement Motivational interviewing courses Skin (urology) HNA screening tool Fertility pathway The London Cancer Alliance West and South What were the metrics? 1 METRICS % of patients that receive HNA at diagnosis Evidence: Evidence within the patient records of HNA having been offered Evidence of actions completed in response to the HNA Performance Measurement: Baseline audit when HNA tool launched Year 1 Q3: Baseline of current practise Year1 Q4 Shadow metrics submitted TARGET 10% Year 2 Q1-2: 25% Year 2 Q3-4: 50% Year 3: to be set following review of achievement year 2 Q3 2 % of patients who have an end of treatment summary Evidence/quality measures: Evidence of the necessary paperwork having been completed Assurance/Performance Measurement: Yr 2 Q1: baseline of current practice Yr 2 Q2: shadow data submitted. TARGET 10% Yr 2 Q3: 20% Yr 2 Q4: 40% Yr 3 Q1; to be set following review of achievement year 2, Q4 3 % of patients who are offered an end of treatment consultation Evidence: Evidence in the patient record of an end of treatment HNA having been offered Evidence of information on smoking cessation, healthy eating and exercise having been discussed and given as part of the resulting care plan Performance Measurement: Yr 2 Q1: Baseline audit of health promotion information currently being given Yr 2 Q2: shadow data submitted. TARGET 10% Yr 2 Q3: 20% Yr 3 Q1-2: 40% Yr 3 Q3-4; to be set following review of achievement year 3, Q1 The London Cancer Alliance West and South And what will they be? (from NHSE London Commissioning Strategy) Intervention 2 years 5 years Recovery package: HNA & Care plan Treatment Summary H&WB events 60% completed 75% completed 100% completed 100% completed 100% completed Stratified follow up Fully implemented in Breast, Colorectal, Lung and Prostate All pathways Physical activity Include intervention in H&WB event Offered to all as appropriate Work support Financial support VR Include in HNA & Care plan Offered to all as appropriate Evidence of referral pathways from MDT Evidence of referral pathways from MDT Evidence of referral pathways from MDT Full services in place Develop links with LTC Work with Integrated Care Champion sites LW&BC fully integrated into the management of LTC agenda Consequences of treatment: Lymphoedema Pelvic radiation disease Sexual function Cancer as a LTC The London Cancer Alliance West and South LCA Survivorship Group: Next steps (2014/5) • Continue aim of reducing inequality and improving patient experience • Refine metrics inline with new commissioning intensions • On-going work on recovery package – Solutions to (full) HNA implementation – Support package for implementation of TS – Agreed approach to roll-out of HWBE • Develop pathways for lymphoedema management • Audit complementary therapy services • Work towards LCA-wide best information and referral pathways for exercise, diet and return to work/education • Research and audit position statement and strategy The London Cancer Alliance West and South The clinical board are responsible for the clinical leadership of the LCA. They are answerable to the members board Clinical Board Chair The pathway group is responsible for driving the work of the pathway. Members must represent: their work group Their profession Their employing organisation Natalie Doyle The Chair is responsible for the leadership and vision of the Survivorship pathway and is answerable to the clinical board. She must deliver against the model of care The set up of the pathway is determined by her to ensure delivery and output is optimal Consequences of Cancer Treatment affiliated groups • Pain • Fertility • Sexual Dysfunction • Menopausal symptoms • Pelvic radiation disease • Fatigue • Bone health The consequences of cancer affiliated groups are tasked with leading the investigation into current availability of services for management of consequences of cancer treatment. These groups are highly like to be constituted from several pathway groups and project management support should not be assumed. See page 2 for survivorship membership Pathway Group See ToR Work-streams • HNA implementation • Treatment summary implementation • Health and Wellbeing events • Metrics • Research • PROMs Clinical Fora The work streams are responsible for delivering their work programme to them. The membership is based on the perceived strengths of both the individuals and of the stream in its entirety. Members can be co-opted from outside the Survivorship Pathway Group. See page 2 for membership Communities of Practice • Rehabilitation • Lymphoedema • Complementary Therapies The Communities of Practice are constituted from acknowledged experts in their field from across the LCA. They are responsible for the delivery of specific work items from the survivorship work plan in addition to their own work priorities. They have their own terms of reference but are accountable to the survivorship group. Some project management support is available to them The clinical fora enables the outputs from the pathway group in its entirety to be shared more widely. It provides the LCA clinical community opportunity to constructively challenge the recommendations of the Group. Engagement with the forum is critical to ensuring recommendations and outputs are integrated into practice The London Cancer Alliance West and South Work-stream Membership HNA roll-out: Maureen Dowling Jo Jefford Michelle Kenyon Cathy Wilson Nicola Beech Ben Hartley Treatment summary roll-out Health and Wellbeing Events Julie Baker Kate Shaw Suzie Stanway Nic Glover Nic Glover Lorraine Barton Teresa Young Donal Gallagher Sonia Pert Ann Muls Metrics Research PROMs Julie Baker Claire Taylor Theresa Wiseman Maureen Dowling Theresa Wiseman Claire Taylor Teresa Young Claire Taylor Michele Kenyon Bonnie Green Janine Mansi Consequences of Cancer Membership Pain Fertility/ Menopausal Symptoms Sexual Dysfunction Pelvic Radiation Disease Isabel White Suzanne Chapman Will Teh Alex Taylor Nick Watkins Isabel White Louise Soames Michelle Bull Nicola Glover Fatigue Bone Health Janine Mansi Ann Muls The London Cancer Alliance West and South Questions? Challenges in Changing Services Sandra Jackson Head and Neck Clinical Nurse Specialist Mount Vernon Cancer Centre The London Cancer Alliance West and South Focus • Moving on from Head and neck cancer workshop • Collaborative Aftercare Protocol • Local challenges • Global challenges • What would help? The London Cancer Alliance West and South Early days We had • No research proposal • No project plan • No business case • No budget! But we also had • Patients with needs • A dedicated head and neck team The London Cancer Alliance West and South What were the needs and drivers? • Increase in calls from patients at around 3 months post treatment • Treatment consequences concerns and anxieties • Some improvements in physical well being leading to reduction in OPA • “Safety net removed” • NCSI – Changing follow up practice The London Cancer Alliance West and South What did we do? • “Moving on from head and neck Cancer” workshop commenced in 2005 Important • Multidisciplinary input • Relevant to patient and carers The London Cancer Alliance West and South Content • • • • • • Information Skills Normalising peer support Reflection Guidance on symptom concerns and alerts Soft moist textured diet or supplement lunch available The London Cancer Alliance West and South Local challenges • Patient recruitment & commitment • Unknown expectations • Creating space in job plans • Support for evaluation The London Cancer Alliance West and South What did we do? • Developed a Collaborative Aftercare Protocol • Patients 2 years beyond treatment who fulfil a defined disease and patient criteria • Alternating CNS led telephone consultations with clinic consultation The London Cancer Alliance West and South Local Challenges • Clinicians and AHP’s not involved in development of protocol were less engaged with new practice. • Managing differing levels of enthusiasm • Job plan concerns • CNS cover for clinic • Increased workload in clinic • Securing ongoing funding The London Cancer Alliance West and South Survivorship is flourishing! The London Cancer Alliance West and South But The Business Case! The London Cancer Alliance West and South Barriers to permanent adoption of change • No national tariff • No national HRG codes • Existing tariffs do not reflect level of expertise required to provide service The London Cancer Alliance West and South Difficult Conversations Quality care Income Generation/ Income Loss Costs The London Cancer Alliance West and South What would help? • National document outlining consequences of not providing on-going strategies • Pass/ fail outcomes which would effect commissioning of services • Inform negotiations between providers and commissioners • Redirection of money saved on avoidable costs The London Cancer Alliance West and South If I knew then what I know now • Macmillan – Making Change happen study day • Tim Anstiss – Health Coaching and Motivational interviewing • Involvement from the start with the Support Oncology Research Team in The Lynda Jackson Macmillan Centre The London Cancer Alliance West and South Something to share I just want to say a thank you for the Moving on from Head and Neck Cancer workshop. I was very sceptical about attending, not knowing if there would be anything relevant to me. I am so glad I decided to go. Every speaker gave me valuable information and some cases exercises which will benefit me for many months to come and possibly for life. I thought over the months of treatment I had learned everything I need to about recovering from surgery and therapy but this workshop gave me so much more. I can’t recommend this workshop highly enough to future patients. The London Cancer Alliance West and South Thank you Appreciative Inquiry Dr Tim Anstiss M.B, M.Ed, D.Occ.Med, M.F.S.E.M Visiting Research Fellow Human Development and Health Academic Unit Faculty of Medicine, University of Southampton Close Thank you See you next time!