Survivorship Clinical Forum: Supported self-management

Welcome and Overview of the afternoon

Transforming Cancer aftercare - supported self management Jane Maher NHS Improvement (cancer) CMO Macmillan Cancer Support Chair NCSI Consequences of treatment work stream

The History of NCSI

National Cancer Survivorship Initiative Breast 70-80% Colorectal 50% Prostate 40-50 %

Pre-planned tests, triage, access back to specialists via trusted route Trusted individuals able to provide ❿ ❿ ❿ ❿ ❿ Information Access to tests Access to expertise Self assessment Tools Ongoing support National Cancer Survivorship Initiative

Cancer and supported self management Heterogeneity Treatment Changing trajectory Powerful myths

The London Cancer Alliance West and South Average Cost Across All Pathways: 13,006 Spend per Patient Aftercare Treatment Complication Free Survival Share of spend on Survivorship Phase 0-1 Year Survival 1-5 Year Survival, No Complications 1-3 Year Survival, Cancer Complications 1-5 Year Survival, Non Cancer Complications 3-5 Year Survival, Cancer Complications Continued Survival, Cancer Complications Continued Survival, Non Cancer Complications Continued Survival, No Complications 9% 41% 57% 58% 56% 46% 39% 22% Increasing length of survivorship

Diagnosis & Treatment Rehabilitation Early monitoring Later monitoring Progressive illness End of life care

Breast cancer care pathway estimating the number of women, 2008* Colorectal cancer care pathway estimating the number of people, 2008* Lung cancer care pathway estimating the number of people, 2008*

Data from the Scottish School of Primary Care s Multimorbidity Research Programme.

Heart failure & breast cancer OR 1.33 N F Khan, D Mant, L Carpenter, D Forman and P W Rose Br J Cancer 2011 105: S29-S37; 10.1038/bjc.2011.420

CNS perspective www.cancerconsequences.org

Total Prevalence - now Total Prevalence - 2030 Diagnosis & Treatment Rehabilitatio n Early Monitoring Later Monitoring Progressiv e Illness End of Life Care (Year 1 Deaths)

Breast 70-80% Colorectal 50% Prostate 40-50 % National Cancer Survivorship Initiative

Evidence framework for self management support. 2

Evidence base for self management programmes Programmes that activate & empower by promoting skills eg goal setting & action planning improve QL, knowledge of condition, coping behaviour, taking medication, self efficacy, and symptom management. Peer led interventions build confidence,but professional support appears critical for sustained changes in health behaviour. Greatest benefits include both peers and professionals. 3

Testing electronic HNA

System 1 Palliative Radiotherapy Curative Radiotherapy Chemotherapy Radiotherapy (5 digit codes) 5149. XalpH x71bl Xa851 All other systems Version 3 five byte codes (Oct 2010 release) Radiotherapy tumour palliation 5149. Radiotherapy Chemotherapy 7M371 8BAD.

Work and cancer Work support is needed from point of diagnosis HCPs have a key role to encourage patients to think positively about work Complex needs patients require specialist support to return to work

How was I? On a good day uncomfortable, using pads, and planning carefully every time I went out of the house. National Cancer Survivorship Initiative On a bad day, I d rather not eat than embarrass myself in front of family and friends and I sleep in a separate room now.

The change squiggle Alan Watts

The HOPE Course: A personal impact Jill Hemington

Market Place: Practice examples (Tea and coffee at 3pm)

Supported Self-Management Programme at Paul s Cancer Support Centre Petra Griffiths, Director and Self- Management Programme Coordinator, Paul s Centre Sud Ubayasiri, Course Leader, Paul s Centre

Paul s Cancer Support Centre Mission We enable people affected by cancer, through community-based care and support, to find new strength, resilience and their own way of coping with the challenges cancer brings. We are based near Clapham Junction.

Self-Management Programme Three elements: 1. Structured courses that help develop self-care & build resilience; 2. Tailored physical activity classes; 3. One-to-One approaches.

Structured courses Coping with Cancer Stress course For people affected by cancer and their carers at any stage. Open access. Coping Skills 4 weeks introductory course Developing your Self Care Skills 8 weeks follow-on for those who choose to go on. On-line option that people can follow flexibly, accompanied by telephone mentoring.

Coping with Cancer Stress course Research taking place into the impact of this course under the auspices of Professor Jessica Corner (National Lead for Cancer Self Management) at Southampton University

Participant comments Helped me to feel calmer and more in control. Helped me to accept my illness, but with added strength and increased sense of well-being & belonging. I have seen everyone by the end of the course calmer, more self assured and most importantly happier than when they came at Level 1. I learnt how to consider my well being and looking after myself instead of others Highlight of my week. Very much appreciate both the sessions themselves and the developing support and camaraderie between the group members.

Coping with Cancer Stress brochure

Structured courses Cultivating Mindfulness This is the main focus of our talk today, and Sud will introduce it shortly.

Tailored physical activity classes Get Active classes Developed by our Macmillan Information Officer, Beverley van der Molen, who is available here to talk to you about this aspect outside this formal session.

One-to-One Approaches One-to-one approaches include: help with skills such as relaxation & visualisation; learning self-hypnosis; change management through life-coaching People can readily move between structured coursework and one to one help, as they feel necessary.

Our focus today is on cultivating mindfulness The evidence base for the positive impacts of mindfulness based approaches in helping people with cancer to develop self care is strong and growing. Sud is now going to introduce the special mindfulness course developed with the needs of people with cancer in mind.

Outline My background What is mindfulness? An example practice The course The reaction/ feedback Evidence Questions if time.

My background Intention: alleviating suffering => changed career. Trained as a doctor, personal benefits of mindfulness. Came across evidence based clinical treatment: MBCT Trained as an instructor, completing masters. Run drop in sessions and Mindfulness courses at Paul s and elsewhere. Good feedback, here to give a taste and a talk.

What is mindfulness Hard to explain; multidimensional :-awareness, kindness, insight. Intentional, non judgemental, present moment awareness Experience the next slide Whatever your experience is, that s OK.

What did you notice? Instruction is to look, does the mind stop there? Thoughts? Emotions? Judgements? Memories? Labels? Trains of thoughts and visceral reactions What if we simply look? How are direct sensations, thoughts, feelings and body sensations linked?

What is mindfulness Compassion, compassion, compassion! Gentleness, patience Being aware of experience, knowing what is happening as it is happening Exploring our experience What happens if we look afresh? How much control do we have over our minds? Do we judge experience? What happens if we come back to the present? Does our attitude to experience affect what we experience? The present moment is where we actually find out Autopilot and stepping out of it

MBCTCa Developed over 10 years, by Trish Bartley who had cancer twice. Utilises a theoretical model (Greer and Moorey) The spiral of anxious preoccupation and strategies for escaping it. Shift from unaware reactivity to awareness and skillful choice. Away from suffering & isolation towards presence and connection. Combines theory, mindfulness meditation, poetry and stories over 8 weeks. 2.5h weekly sessions, 1h daily home practice, monthly drop-ins Developing self compassion/kindness/awareness

MBCTCa Themes include turning towards the difficult, coming back to the present moment Session involves creation of action plans to look after oneself Instructors have a developed personal practice and utilise what they work with. Experiential not didactic

Who is it for? Those who can commit to the practice, and for whom it is the right time. Collaborative assessment and orientation face to face to make an informed decision, explaining challenges of the course.

Participants reaction Average feedback from our course: 8.4/10 Positive comments I feel happier and calmer, more able to cope. I enjoy being alive more and have had moments of clarity and brightness which show me what is possible; deeply happy just existing. The most revolutionary concept for me was exercising kindness and goodwill towards myself, which in turn had a knock-on effect on my relationship with others. This has been the greatest personal benefit. I have found that I have a greater awareness of the things that are important in my life and am able to make better decisions with this awareness in mind. Difficulties Usefully, confronts you with yourself => need good O and A Evangelising about course!

Research Findings Currently exploring MBCTCa Cost effectiveness multi-centre trial due to complete in 2014 Lots on mindfulness and cancer Small scale study done at Paul s.

Research Mindfulness and cancer Shennenet al (2010) : 3 RCTs were included, two MBCT and one MBSR, which all found significant improvements in depression and anxiety post intervention. Sustained at 3m follow up Piet et al (2012) : as good as or better than other psychological therapies in cancer, a general approach to deal skillfully with distress Wurtzenet al (2012): large RCT 336 BC sufferers 12m follow up, higher levels of anxiety and depression benefited more from mindfulness. Qualitiativebenefits: Dobkin(2008) and MacKenzieet al (2007) opening to change, self control, shared experience, personal growth, and spirituality ======================>self management?

Preliminary Results Mindfulness Scores Wellbeing scores 4.5 sub-title 4 25 3.5 3 20 Score /5 2.5 2 1.5 1 Column 1 Score /25 15 10 Column AD Column AE Column AF 0.5 0 5 Row 2 Row 1 Row 3 Pre, Post and 3 M follow up 0 1 2 3 4 5 6 7 pre post and 3M follow up data for each participant

Cover image Now, when I blow a serve or shank a backhand, I still get those flashes of self-doubt but I know how to handle them: I acknowledge the negative thoughts and let them slide by, focusing on the moment. That mindfulness helps me process pain and emotions. It lets me focus on what's really important. It helps me turn down the volume in my brain. Novak Djokovic Guardian 6 th Sept

Thank you Cancer specific course People have benefited Encouraging evidence Helps self management Wishing you well Sud@mindfullyfree.co.uk www.mindfullyfree.co.uk

Our next mindfulness course

A partnership between Paul s Centre and St George s, held at the hospital. Led by Gary Born, who came to this work through his own cancer experience, and the help he gained through mindfulness.

For a more extensive introduction to this special form of mindfulness training Trish Bartley, of Bangor University Centre for Mindfulness Research and Practice and also someone who has her own cancer experience. FREE TALK: THURSDAY 27 FEBRUARY 2014, 6-8 pm in central London Workshop for health professionals (28 Feb & 1 March) on making use of mindfulness for their own self-care and for stress management. Info:petrag@paulscancersupport.org.uk

Paul s Cancer Support Centre 20-22 York Road London SW11 3QA T: 020 7924 3924 www.paulscancersupport.org.uk

Physical Activity -The Path to Self Management Isla Veal, Physiotherapist

4 Points Rational for this project The process Challenges Our results

Supported Self Management where patients are given the information about self management support programmes or other types of available support and how they get in touch with professionals if they have any concerns NCSI 2013

How much exercise are cancer survivors doing now? Number of patients meeting exercise recommendations (%) % of patients 80 70 60 50 40 30 20 10 0 End of treatment 4 months later Meeting exercise recommendations Not meeting exercise recommendations From IPAQ short form with walking not included in analysis

Working Model End of Treatment Clinics / HCP Consultations PROSTATE GYNAE COLORECTAL LYMPHOMA BREAST Stratification Tool-Onward path into any of the following Specialist rehab, 1:1 Physio Gym Class Community Physio Community exercise programmes/ Exercise on referral schemes Pathway towards self management Self Exercise

Number of Referrals= 30 Number of Referrals = 15 Number of Referrals= 10 From NCSI 2013 Aim: To direct patients towards self management by offering support needed and referring on

Market Place: Practice examples

Round table discussions

Close and Thanks