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Linking Initiatives which Support the Patient Experience Noëline Young National Cancer Survivorship Initiative Assessment and Care Planning Workstream The vision is to provide answers to the questions that patients ask “So what exactly has been done to me?” “What happens next?” “Why am I having these appointments?” “How will this medical / emotional / financial / practical / spiritual issue be addressed?” NCSI Assessment and Care Planning Workstream • • • • Assessment and Care Planning Treatment Record Summary Cancer Care Review Transition from Treatment to Follow- up Care Treatment Record Summary Cancer Care Review End of Treatment Risk Assessment GP Assessment and Care Planning Individualised Care Assessment and Care Planning Survivorship • Survivorship can be a sad, lonely and scary place for people affected by cancer • But it does not have to be like that • By learning how to improve the quality of care survivors receive and communicating more effectively, patients can be focused, supported and motivated to become more self caring Why Assess Patients Needs? • Patients that currently have a routine followup have reported that their needs are not being met • Resources are being wasted by providing services that are not fit for purpose • Assessing patients will mean that patients needs are addressed and resources are used appropriately Why Assess Patients Needs? “I feel like my whole life has been thrown up into the air, chopped in a million pieces and is now on the floor in front of me. How do I make sense of this? Where do I start?” Jane Rankin (2008) Assessment Process Self Assessment Contact Assessment Specialist MDT Assessment Specialist Assessment Why a Care Plan? “Cancer patients who feel comfortable communicating with their health care providers report greater satisfaction with their care, a stronger sense of confidence in their abilities to cope with cancer and a better quality of life than patients who were less positive about their communication skills” Michael Feuerstein (2006) Treatment Record Summary • Copy of the treatment record summary to be forwarded to the GP and given to the patient • Provided by the consultant and/or by extracting information from the Assessment and Care Plan Cancer Care Review • GPs play a pivotal role in providing care in the community • Cancer Care Review is carried out by the GP at 6 months following diagnosis • This enables the GP to identify the needs of the patient and their family • Able to offer information, advice and support. • QOF points attached to this review By assessing, care planning and communicating with people living with and beyond cancer we are identifying individual needs and planning for the future whatever their prognosis, faith, gender, sexual orientation, age or disability Health and Wellbeing Clinics The Story So Far ! Jane Rudge and Fay Scullion Joint Project Managers - HWBC 9TH March 2010 Background • • • • • What have patients told us Vision and concept Volunteers complimenting professionals Lets focus on living Part of a bigger picture • So lets go for it! 14 Process so far • UK wide expressions of interest – timescales – shortlists – Site visits • Final test sites • Learn and share events • Evaluation 15 What’s in a name? 16 Vocational Rehabilitation Project Lyn Bruce – VR Project Manager Introduction • How the VR project developed • Key purpose of the VR project • - to identify a model of VR that can be adopted nationally • Method – to fund pilot sites to test the model 18 Four level model of Vocational Rehabilitation • Case management approach LEVEL 4 Specialist VR services • Employer involvement • Four values LEVEL 3 Self Management programmes LEVEL 2 121 & signposting LEVEL 1 Info & support 19 Project timelines January February March April May March 2011 May 2011 20 - Fifteen proposals received - Ten proposals shortlisted - Seven orgs complete case of need - ITT for project evaluation sent out - Pilots start - Evaluation starts - Pilots end - Evaluation completes Some key features of pilots Employer Partnerships CMP foundations VR Project Upskilling existing staff 21 Workplace assessments Learn & Share Learn & Share Formative & Summative Evaluation Learn & Share 22 Learn & Share National Cancer Survivorship Initiative Supported Self-Management Workstream Lynn Batehup Nicola Davies Self-Management workstream 9th March, 2010 Self-Management and Cancer • Having an active role in managing a long-term condition can empower people to act for themselves – increase their confidence in their ability to manage problems associated with their condition (Coulter and Ellins, 2006) • People generally manage problems associated with their cancer and its treatment as part of their daily lives, and may want to have an active role in tackling them. 24 Self-Management and Cancer • “People have different dispositions, supports and resources, resulting in individual differences in recovery and restoration of health and well-being, self-management activity, and the need for self-management support.” Foster et al. (2009) Self-management of problems experienced following primary cancer treatment: an exploratory study. 25 Components of Cancer Survivor Self-Management (Foster et al 2009) Problems After Cancer Treatment Effects of treatment Sources of Self Management Support Abandonment Healthcare workers Lack of information Families & friends Lack of support Accessing information Emotional difficulties Networking with other cancer survivors Social/relationship difficulties Work & finance Physical/functional changes Organised support External Resources 26 Self Management Strategies Psychological problems: Altered outlook/priorities Managing emotions Self resourcefulness Social problems: Proactive socialising Sharing experience Resisting contact Managing work/finance Physical problems: Simple strategies Complex strategies Personal Resources Problem Resolution LIVE WELL AFTER CANCER Support for Self-Management – what is the Evidence? – Fundamental Culture Change • 27 A relationship with health professionals which is based on partnership is fundamental – both patient and professional are experts from their different perspectives.(Powell et al 2009; Epstein & Street 2007) Evidence – Who Benefits? Personalised assessment and care plan (Yates et al ongoing; Ruland et al 2007) Risk stratification – ‘high risk’ groups (e.g. Comorbidities; ethnic minorities) Tailored information that enhances knowledge – health literacy(Jordan&O sborne 2006) A partnership relationship with their health professionals which enables self management 28 Evidence of Benefits Self-management programmes which target specific problems/symptoms, and for specific cancer types (Cockle-Hearne and Faithful, 2009; May et al., 2009) Self-management programmes supporting adjustment to survivorship: Based on assessment of need and risk: - Low support and low self-efficacy - Lack of preparedness(Stanton et al., 2007) - Health literacy Evidence of some benefit Having to undertake challenging lifestyle behaviour change – obesity; physical activity; smoking cessation; as part of patienttriggered aftercare 29 Referral to organised cancer support groups – sharing and learning from the experience of other cancer survivors Evidence - What Works? What Works? Evidence Clinician training for supporting self-management during the consultation. Coulter and Ellins, 2007; Powell et al 2009; Epstein&Street 2007) ‘Intensive’ adjustment-focused self-management programmes targeted at ‘high risk’ survivors. Cockle-Hearn and Faithful, 2010). Design of programmes should include: -information provision -instruction -modelling -personal goal setting -practice -self-monitoring -reporting back -goal review - CBT techniques - consider length (Abraham and Gardner, 2009) Coulter & Ellins 2007 Lifestyle behaviour change requires ongoing support and coaching. Coulter & Ellins, 2007;Korstjens 200 Self-help resources such as video/DVDs can be effective/cost-effective if designed to incorporate self-efficacy (Mandelblatt et al., 2008) Self-management interventions can have cost advantages over conventional care. (Mandelblatt et al., 2008) 30 31 Health care as individual as you East Surrey CareCall is a service designed to help you manage your health. Set up in response to local patient views, CareCall is a free service offering you:• Your own personal Health Coach who is a specially trained Registered Nurse. • Information about health issues that are important to you. • Better control of your own healthcare. • The opportunity to discuss treatment plans and options. CareCall works along side your GP practice and other community services – it does not replace your contact with them. 32 CareCall is part of Surrey Primary Care Trust How do I access the Service? Participation in CareCall is your choice. You can call a Health Coach between the hours of 7am and 11pm Monday to Friday and on Saturday 9am to 1pm through a freephone number 0800 028 4207. Outcomes: what are the important ones? Patient Clinician Commissioners Policy Personalised care Patient in partnership communication skills. Meeting national targets. Establishment of patient-centred care. Improved healthcare utilisation - reduction in missed appointments. Service improvement. -quality Reduced costs of treatment. Cost-effectiveness. Secondary prevention. Health literacy Self-efficacy to selfmanage. Self-management skills development. More clinic time. Earlier diagnosis. Reduced symptom burden. Improved quality of life. Satisfaction with service. 33 Multidisciplinary team work. Improvements in cancer care to match those established in the best European countries.