Transforming Cancer Services Team for London Transforming primary care for people living with and beyond cancer

Transcription

1 Transforming Cancer Services Team for London Transforming primary care for people living with and beyond cancer June/July 2017

2 House keeping In the event of fire.follow the green fire escape signs Toilets. Tea and coffee will be served outside the room to the right Please don t let us do all the talking please interact with us and each other Please tweet #livingwithandbeyondcancer Wifi: visitor Spring summer2017 2

3 Panel members Dr Anthony Cunliffe, TCST GP Lead, David Jillings, Pelvic Radiation Disease Association Dr Karen Robb, Macmillan Rehabilitation Clinical Lead Dr Philippa Hyman, Macmillan Mental Health Clinical Lead and Clinical Psychologist Dan Callanan, Macmillan Partnership Manager TCST Team: Liz Price, TCST Senior Strategy Lead Charlene Onofiok, TCST Team Administrator Sarita Yaganti, TCST Strategy Implementation Lead 3

4 Agenda 09:00 Registration Welcome, Introductions and ice breaker 09:30 Sarita Yaganti; Transforming Cancer Services Team for London Living with and beyond cancer and the Recovery Package 09:55 Dr Anthony cunliffe, GP; Transforming Cancer Services Team for London Overview of online resources 10:25 Dr Anthony Cunliffe, GP; Transforming Cancer Services Team for London 10:35 Macmillan resources Dan Callanan, Partnership Manager; Macmillan 10:50 Q&A 11:05 Refreshments break 11:20 Case Study Consequences of cancer treatment David Jillings, Pelvic Radiation Disease Association 11:40 Dr Karen Robb, Macmillan Rehabilitation Clinical Lead, Transforming Cancer Services Team for London Dr Philippa Hyman, Macmillan Mental Health Clinical Lead and Clinical Psychologist, Transforming Cancer Services Team for London 12:10 Case Study Reflections and close 12:30-12:45 What would you like us to take us to take to the commissioners? 4

5 A quick little ice breaker Who you are. What brings you here today? Name two things you want out of this session 5

6 Aims and objectives Aims: Help improve understanding of the management of people LWBC Objectives: To introduce the Recovery package and tips to ensure CCRs are fit for purpose To provide a strategic overview of cancer care To outline the top concerns experienced by patients LWBC To highlight online educational tools and resources that can enhance patient care To highlight Macmillan resources to support HCPs, patients and carers specifically for nonmedical needs. To explore some key psychological and physical consequences of cancer treatment through the use of case studies To explore the challenges and issues faced by primary care HCPs and collate these for discussion with commissioners 6

7 Who are we? What do we do? Our vision All Londoners* have access to world class care before and after a cancer diagnosis Our mission As a trusted and expert partner, we drive delivery of world class cancer outcomes through collaboration, commissioning support, clinical leadership, education and engagement The pan-london Transforming Cancer Services Team are responsible for: A once for London approach to implementing the national strategy Providing subject matter expertise, evidence and intelligence for cancer commissioning support Working with partners to reduce variation and deliver improved cancer outcomes Primary care development and education Targeted service improvement in secondary care * Transforming Cancer Services Team supports all 32 London CCGs and West Essex CCG 7

8 London STP representatives for cancer NWL STP Cancer Lead: Lizzy Bovill; TCST SMT Lead: Andy McMeeking; STP GP Lead: Afsana Safa; CPM: Bec DuBock Hillingdon Hounslow Harrow Ealing Richmond Brent Hammersmith & Fulham Wandsworth Barnet Camden Central London West London Commissioning Lambeth Haringey Enfield Islington City & Hackney Southwark Tower Hamlets NCL STP Cancer Lead: Neil Snee; TCST SMT Lead: Julie Lees; STP GP Lead: Clare Stephens; CCM: Michael Yare Waltham Forest Newham Greenwich Redbridge Barking & Dagenham Havering NEL STP Cancer Lead: Paul Haigh; TCST SMT Lead: TBC; STP GP Lead: Vacant; CCMs: Kate Kavanagh (BHR & WE) & Tony Lawlor (WELC) Lewisham Bexley Kingston Merton SWL STP Cancer Lead: Jonathan Bates TCST SMT Lead: Liz Price; STP GP Lead: Tony Brzezicki; CPM: Laura Morrison Sutton Croydon Bromley SEL STP Cancer Lead: Andrew Eyers; TCST SMT Lead: Julia Ozdilli; STP GP Lead: Anthony Cunliffe; CPM: Stephanie Alexander *TCST also serves West Essex CCG which borders Enfield, Waltham Forest, Redbridge and Havering CCGs 8 21

9 Living with and beyond cancer in London Every year more than 30,000 Londoners learn they have cancer, and there are more than 220,000 people living with and beyond cancer. The TCST s Living With and Beyond Cancer (LWBC) team develops guidance and provides strategic support on local planning and delivery of: The cancer recovery package and stratified follow up pathways The management of consequences of treatment including physical, social and psychological needs Cancer as a long term condition and integrated care England.tcstlondon@nhs.net 9

10 01 Living with and beyond cancer Dr Pawan Randev, TCST GP Advisor Transforming London s health and care together 10

11 Headline statistics for cancer In the UK, cancer remains the leading cause of mortality (NHSE). It is a top priority nationally and in London. 1 in 2 people will get cancer sometime in their life (CRUK). In London and West Essex, we expect there to be around 387,000 people by 2030 (this estimate is based on 2010 prevalence, NCIN). In 2013, we know that there were 223,500 people in London who were living with or beyond cancer (diagnosed any time since 1991, NCIN). Half (50%) of people diagnosed with cancer in England and Wales survive their disease for ten years or more ( ). Five-year relative survival for cancer is below the European average in England, Wales and Scotland (CRUK). 70% of people who have cancer, have at least one other long term condition (Macmillan). 25% of individuals had unmet physical and psychological needs at end of treatment 47% of cancer survivors express a fear of their cancer returning. 11

12 The cancer story is changing Half of people with cancer may live more than ten years after their diagnosis Total Prevalence now Total Prevalence 2030 Maddams J, Utley M, Moller H. Projections of cancer prevalence in the United Kingdom, Br J Cancer :

13 Survival is increasing 13

14 But not everyone is living well 14

15 Cancer as a long term condition? Macmillan Cancer Support. Cancer in the context of other long-term conditions. Scoping evidence review and secondary data analysis

16 People with cancer have significant social care needs 16

17 Key transition points in a patient s cancer journey From Primary into secondary care 2. Between secondary/tertiary providers 3. From Secondary/tertiary care back to Primary/Community 4. Between Primary and community care What can go wrong???? GP / practice not informed that patient is at end of treatment No clear details re treatments and possible consequences early and late Delays in information transfer patient arriving to GP before information received Holistic needs not addressed DN/community care co-ordination, social needs, carer needs Prescribing confusions responsibilities etc Patients not feeling their GP/PN can manage their cancer needs Lack of understanding of local services

18 02 The Recovery Package Transforming London s health and care together 18

19 Recovery package Routine use of the recovery package A combination of different interventions, which when delivered together, greatly improves the outcomes and coordination of care for people living with and beyond cancer. Interventions support people to self manage to the best of their ability. Primary care should receive copies of the Holistic Needs Assessments with an up to date care plan (subject to patient consent) and Treatment Summary so that they can conduct holistic cancer care reviews and support patients to self manage. If you don t receive these from the hospital, you can request them from the consultant 19

20 Recovery Package tools HNAs and Care Plans: ensures that people s physical, practical, emotional, spiritual and social needs are met in a timely and appropriate way, and that resources are targeted to those who need them most. An HNA is a simple questionnaire that is completed by a person affected by cancer A Treatment Summary is a document (or record) completed by secondary care professionals, usually the multi-disciplinary team (MDT) after a significant phase of a patients cancer treatment. It describes the treatment, potential side effects, and signs and symptoms of recurrence. It is designed to be shared with the person living with cancer and their GP. Health and Wellbeing events: Education and information events to support and enable people living with cancer and their families to take control and participate in their recovery, giving them necessary information, and promoting positive lifestyle change such as nutritional advice and encouragement to increase physical exercise. 20

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22 Recovery Package in Primary Care: Cancer care review Discussion and advice on any physical, practical, emotional, spiritual, social or lifestyle concerns raised in the assessment Signposting to either local or national support groups Information about Health and Wellbeing Clinics, education events or self management courses as available in the local area Referral to allied healthcare professionals for support if required Advice related to lifestyle e.g. stop smoking services Information or referral to an appropriate physical activity programme Information or referral for advice on diet and nutrition Referral for counselling or psychological support Support related to work and finance concerns Support for spiritual needs 22

23 CAN003 percentage of patients receiving CCRs 23

24 CCRs in practice We asked a group of GPs from across London how they conduct theirs: 82% of GPs said that they conduct cancer care reviews in practice. 74% use the QOF CCR template 14% use the Macmillan CCR template 12% didn t know what template they used 53% conducted review face to face with the patient 41% had a mixture of face to face and telephone consultations 6% conducted the cancer care reviews without the patient 60% of the respondents said they receive a Treatment Summary from secondary care. 24% didn t and 16% of the GPs didn t know if they received the summary 33% felt their consultations catered to their holistic needs 37% were not holistic in their nature and 30% were not sure CCR appointment lengths varied greatly from 2 40 minutes with an average of minutes depending on the complexity of the cases How do you conduct CCRs? 24

25 Top ten concerns experienced by patients LWBC What would you think they are? Worry, fear or anxiety Tiredness / exhaustion or fatigue Sleep problems / nightmares Pain Eating or appetite Anger or frustration Getting around (walking) Memory or concentration Hot flushes / sweating Sore or dry mouth 25

26 Conversation starters Open Questions What s the most important thing to talk about today, to help you with your recovery? What are your top three issues? What are your priorities for your wellbeing at the moment? Mood assessment: Have you felt low, down or hopeless in the last month? Are you able to feel pleasure and enjoyment in life? Have you felt that you can t be bothered?,and, It can be common for people to have troubling ideas, like hurting yourself - Are you concerned? 26

27 The Cancer Patient Experience Survey 2015 The 2015 CPES tells us that there is a difference between patient satisfaction of their stay in hospital compared to that of the support provided by primary and community care. Patient satisfaction with support following discharge is even worse. London continues to fall below the national average Source: National Cancer Patient Experience Survey 27

28 4 point model for holistic cancer care review 28

29 07 Online (free) resources Transforming London s health and care together 29

30 Online resources: managing patients with cancer Learning Resources Talk RCGP CoT toolkit elearning for Health open to all professionals, free, with certificate. Macmillan Learn zone Health talk online BMJ Learning

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39 Workbooks and reflections 39

40 BMJ Learning 40

41 Signposting resources 41

42 Learning from people LWBC 42

43 Curated Videos 43

44 Macmillan resources Daniel Callanan, Macmillan Partnership Manager 44

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47 Healthcare Service

48 Macmillan Support Line

49 Macmillan Website

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51 Be.Macmillan

52 In your area

53 Online Community

54 THANK YOU PLEASE VISIT THE MACMILLAN STAND AT LUNCHTIME TO MEET ME AND FOR MORE INFORMATION

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56 09 Consequences of cancer treatment David Jillings, patient representative (PRDA) Dr Karen Robb, Macmillan Rehabilitation Clinical Lead (TCST) Dr Philippa Hyman, Macmillan Mental Health Clinical Lead (TCST) Transforming London s health and care together 56

57 Case studies On your tables, discuss the case studies and answer: What further info do you want from the patient? How would you find more info? What would you do next? Part 2: Reflecting on the session by David, Karen and Philippa What would you now do differently? 57

58 09 PELVIC RADIATION DISEASE ASSOCIATION HELP & INFORMATION FOR BOTH PATIENTS & HEALTHCARE PROFESSIONALS VISIT US AT www. prda.org.uk Transforming London s health and care together 58

59 Understanding Rehabilitation Rehabilitation is the development, to the maximum degree possible, of an individual s function and/or role, both mentally and physically, within their family and social networks and within education/training and the workplace where appropriate (NHS England 2016) Rehabilitation intervention underpins all conditions Rehabilitation spans the entire life course Rehabilitation is everyone s business and AHPs are the specialist workforce 59

60 Stages of rehabilitation Preventative: reducing the impact of expected disabilities and improving coping strategies. Restorative: returning individual to pre-morbid levels. Supportive: in presence of persistent disease and need for treatment, rehab is aimed at limiting functional loss and providing support. Palliative: preventing further loss of function, measures put in place to eliminate or reduce complications and to provide symptom management. (Dietz 1980) 60

61 Why is rehabilitation important? A modern healthcare system must do more than just stop people dying. It needs to equip them to live their lives, fulfil their maximum potential and optimise their contribution to family life, their community and society as a whole (NHS England 2016) 61

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63 Benefits of good rehabilitation It is increasingly acknowledged that effective rehabilitation delivers better outcomes and improved quality of life and has the potential to reduce health inequalities and make significant cost savings across the health and care system (NHS England 2016) Example It is estimated that for every 1 the NHS spends on lymphoedema services, it saves 100 in hospital admissions (Macmillan Cancer Support). 63

64 Psychological effects of cancer Psychological distress is a common and understandable response to a diagnosis of cancer and living with and beyond cancer The majority of people use a variety of resources to cope including their own inner emotional resources and external support systems (e.g family/friends/3rd sector) Important role for professionals can be to normalise emotions. Referral to another service not always indicated or necessary Vital to have knowledge of your local services 64

65 It's not just about anxiety and depression Although anxiety and depression may return to pre-morbid levels, rarely does a cancer patient describe a sense of continuity with their lives before cancerthere is invariably a shift in the individual s sense of themselves and the world - Dr James Brennan, 2001 Social-Cognitive Transition model of Adjustment to Cancer 65

66 The impact of cancer on sense of self and the world Cancer challenges our mental models Future Making plans, goals, hope Motivation Relationships Strengthening, affirming, reassuring, disappointing, straining Self Self-worth, personal control, coping Body Appearance, capability, comfort, reliability, sensation World Existential issues, spiritual, meaning, purpose 66

67 Conversation prompts Chronic fatigue Severe pain Urinary problems Gastrointestinal problems So routinely ask: What impact is that having on your life? Lymphoedema Swallowing/speech problems Body image issues Fear of recurrence How are you coping with that? Sexual difficulties Relationship problems Financial worries/unemployment

68 Accessing TCST s LWBC resources Recovery package LWBC Commissioning Guidance: Recovery Package (2015) Treatment Summaries: a briefing for cancer GPs (2016) Cancer Care Reviews & integrated care Cancer as a long term condition report (2015) and sample business case (due 2017) CCR clinical content (2015) Primary Care Cancer Checklist (2016) Charlson score workbook: prevalence and co-morbidities at time of diagnosis by CCG (2017) Primary care education LWBC Training Needs Analysis surveys for the primary care workforce (2016) o GPs o GP Trainees o Primary Care nurses o Community pharmacists and dentists Prospectus (in development) Prostate cancer (Primary care led follow up) Croydon Primary Care led Prostate Cancer follow Up project evaluation (2016) ICF s Economic Analysis (2016) Desktop review of the Prostate Cancer UK projects in London (2016) CCG/STP sample business case (2016) Stratified follow up pathways (hospital led) Financial modelling tools (in development, part of Transformation Funding o London Cancer colorectal cancer pathway o London Cancer prostate cancer pathway o London Cancer breast cancer pathway Cancer Rehabilitation Psychological support for people affected by cancer: commissioning guidance (2015) Pathway and service specification for psychological support for people affected by cancer (in development) Lymphoedema commissioning guidance (2016) and sample business case (due 2017) Cancer rehabilitation scoping document (2017) Cancer Rehabilitation commissioning guidance (in development) 68

69 Contact us TCST is part of the Healthy London Partnership, a collaboration between all London CCGs and NHS England London region to support the delivery of better health in London. 69

70 Thank you!

71 Transforming Cancer Services Team for London Living with and beyond cancer and primary care commissioning June/July 2017

72 Aims and objectives Aims: Help improve understanding of the management of people LWBC Objectives: To provide a strategic overview of cancer care To outline the top concerns experienced by patients LWBC To highlight the commissioning priorities for London To introduce the Recovery package and tips to ensure CCRs are fit for purpose To explore some key psychological and physical consequences of cancer treatment through the use of case studies Feedback from primary care HCPs on the challenges and issues faced on the ground 72

73 Agenda Welcome, Introductions and ice breaker 14:00 Sarita Yaganti, Transforming Cancer Services Team for London Cancer Commissioning for London 14:30 Dr Tony Brzezicki, co-chair of London Cancer Commissioning Board Model of Care for LWBC and variation in provision and outcomes 14:50 Liz Price, Senior Strategy Lead, Transforming Cancer Services Team for London 15:20 Refreshments break Consequences of cancer treatment David Jillings, Pelvic Radiation Disease Association Dr Karen Robb, Macmillan Rehabilitation Clinical Lead, Transforming Cancer Services Team for London 15:35 Dr Philippa Hyman, Macmillan Mental Health Clinical Lead and Clinical Psychologist, Transforming Cancer Services Team for London Primary Care Development 16:05 Sarita Yaganti, Implementation Lead; Transforming Cancer Services Team for London Offer from TCST: how can we help? 16:25 Interactive session looking at CCG and STP plans for LWBC 16:45-17:00 Reflections and close 73

74 Panel members Dr Tony Brzezicki, co-chair of London Cancer Commissioning Board Liz Price, TCST Senior Strategy Lead Sarita Yaganti, TCST Strategy Implementation Lead Chris Arthur, Pelvic Radiation Disease Association Dr Karen Robb, Macmillan Rehabilitation Clinical Lead Dr Philippa Hyman, Macmillan Mental Health Clinical Lead and Clinical Psychologist TCST Team: Charlene Onofiok, TCST Team Administrator Dr Pawan Randev, TCST GP Lead, Primary Care Education 74

75 House keeping In the event of fire.follow the green fire escape signs Toilets. Tea and coffee will be served outside the room to the right Please don t let us do all the talking please interact with us and each other 75

76 01 Cancer commissioning for London Dr Tony Brzezicki Transforming London s health and care together 76

77 Who is TCST? Transforming Cancer Services Team for London Healthy London Partnership: The Healthy London Partnership includes pan London programmes such as cancer (TCST), primary care (TPC), mental health, self care/personalisation, children & young people, digital, estates etc. Transforming Cancer Services Team is responsible for: 1. A once for London approach to implementing the national strategy 2. Providing subject matter expertise, evidence and intelligence for cancer commissioning support 3. Working with partners to reduce variation and deliver improved cancer outcomes 4. Primary care development and education 5. Targeted service improvement in secondary care 77

78 TCST s LWBC team objectives We develop guidance and provide strategic support to commissioners on the local planning and delivery of: The cancer recovery package and stratified follow up pathways The management of consequences of treatment Cancer as a long term condition and integrated care We work with our partners in London to achieve these objectives: including London s CCGs and STP cancer groups, London Cancer, Royal Marsden Partners, South East London ACN, Macmillan and other charities. We always involve service users and clinicians in developing our guidance. England.tcstlondon@nhs.net 78

79 London STP Map 32 CCGs (+ West Essex), 5 STP footprints, 8.6m people plus ~3m commuters *TCST also serves West Essex CCG which borders Enfield, Waltham Forest, Redbridge and Havering CCGs Harrow Hillingdon Ealing Hounslow Richmond Brent Wandsworth Camden Camden Central London West London Hammersmit h & Fulham Barnet Lambeth Haringey Islington City & Hackney Southwark Enfield Waltham Forest Tower Hamlets Newham Greenwich UCLH Cancer Collaborative (vanguard) covers NCL and NEL STPs Redbridge Barking & Dagenham Havering Lewisham Bexley RM Partners (vanguard) covers NWL and SWL STPs Kingston Merton Sutton Bromley SEL Cancer Alliance covers SEL STP Croydon 79 79

80 Cancer commissioning governance model How are London s stakeholders involved in transformation, service redesign, performance management? Accepts priorities presented by CCB and supports delivery Alignment of priorities Ensures strategic proposals for cancer fit with the wider spec comm strategy Formulates the pan- London programme and provides recommendations Cancer Commissioning Board (CCB) NWL STP Agrees priorities and makes final decisions NCL STP NEL STP SEL STP Commissioning governance London Cancer Learning Partnership SWL STP Cancer Vanguard (London) RM Partners ACN UCLH Cancer Collaborative SEL Cancer Alliance Delivery governance Specialised Commissioning Executive Group Cancer Commissioning Board Clinical Advisory Group (CCB CAG) Cancer Intelligence Priorities for London Steering Group CCB Patient Advisory Group (CCB PAG) LWBC Partnership Board (LWBC PB) Early Diagnosis Advisory Group (EDAG) KEY: Provides advice and reports to Two way relationship Provides input, information (and representatives) 80

81 02 LWBC strategy Liz Price Transforming London s health and care together 81

82 What living with and beyond cancer means to us 82

83 Introduction In the UK, cancer remains the leading cause of mortality (NHSE). 1 in 2 people will get cancer sometime in their life (CRUK). In 2013, we know that there were 223,500 people in London who were living with or beyond cancer (diagnosed any time since 1991, NCIN). In London and West Essex, we expect there to be around 387,000 people by 2030 (this estimate is based on 2010 prevalence, NCIN). Half (50%) of people diagnosed with cancer in England and Wales survive their disease for ten years or more ( ). Five-year relative survival for cancer is below the European average in England, Wales and Scotland (CRUK). 88% of people have no serious comorbidity (ie requiring an inpatient admission) recorded at the time of their cancer diagnosis (TCST/PHE). Yet 70% of people who are living with or beyond cancer, have at least one other long term condition (Macmillan). Over 85% of primary care nurses and GPs want further training on the management of specific consequences of cancer treatment: cardiovascular, osteoporosis, incontinence, sexual dysfunction, cancer related fatigue (TCST TNA survey) 83

84 National policy drivers 84

85 Regional policy and guidance 85

86 National quality of life metric (in development) As part of the Cancer Dashboard, the new quality of life metric will provide, for the first time, an indication of how well people are living after cancer treatment and not just how long they are alive. Expressions of Interest are being sought for 4 cancer alliance/vanguard sites in England. Sites must be able collect data digitally from patients who have finished cancer treatment. Sites must also be able to meet 62 day standard and deliver projects in transformation funding bids. Expressions of interest should be submitted to cancerpolicy.england@nhs.net by 5pm on Friday, 14 th July 2017 using the application form. Any questions: sarah.benger@nhs.net 86

87 : There are specific issues for patients with cancer that would benefit from a holistic, long term conditions approach. 94% of people with cancer experience physical health problems in their first year after treatment 70% of people who live with and beyond cancer have at least one other long term condition A Nuffield Trust evaluation (2014) showed that 15 months after diagnosis, people with cancer had 60% more A&E attendances, 97% more emergency admissions and 50% more primary care contacts compared to a population of the same age/gender. 64% of people living with cancer have practical or personal support needs, and 78% have emotional support needs; the majority (75%) of which say that these needs are caused by their cancer or cancer treatment. Yet many do not get the support they need to live as well as possible in their homes. At diagnosis, half of all patients experience anxiety and depression sufficient to impair their quality of life. One quarter will have ongoing symptoms for the next six months. Psychological morbidity impacts upon not just quality of life, but survival. Of those who receive social care support, more people receive this 18 months after their cancer diagnosis. Social care use for those with cancer is less than for those with other chronic diseases. Late effects of radiotherapy and chemotherapy can lead to a raised risk of new primary cancers, heart disease, diabetes, osteoporosis, cognitive dysfunction/dementia, hypothyroidism. There is increasing evidence of the importance of diet and physical activity to: reduce likelihood of new primary cancers, reduce rates of cancer recurring, manage the physical and psychological effects of treatment. Evidence from the United States shows that exercise following a cancer diagnosis can prevent recurrence of cancer by 40% - this is more cost effective than chemotherapy and much greater reduction in patients developing consequences of cancer treatment. 87

88 03 Model of care for LWBC Liz Price Transforming London s health and care together 88

89 1. Recovery package Routine use of the recovery package A combination of different interventions, which when delivered together, greatly improves the outcomes and coordination of care for people living with and beyond cancer. Interventions support people to self manage to the best of their ability. Primary care should receive copies of the Holistic Needs Assessments with an up to date care plan (subject to patient consent) and the Treatment Summary so that they can conduct holistic cancer care reviews and support patients to self manage. 89

90 2. Stratified follow up pathways National priorities: breast, prostate and colorectal cancers Implement stratified pathways of care The clinical team and the person living with cancer make a joint decision about the best form of aftercare based on: their knowledge of the disease (what type of cancer and what is likely to happen next) the treatment (what the effects or consequences may be both in the short term and long term) the person (whether they have other illnesses or conditions, and how much support that they feel they need). 90

91 3. Consequences of Treatment Consequences of treatment (short term and late effects) Lymphoedema, pelvic radiation disease, sexual dysfunction (men and women), fertility, psychological support, hormone symptoms, cancer related fatigue, pain management etc etc Pre/rehabilitation from point of diagnosis Physical activity, Vocational rehabilitation as a minimum 91

92 4. Long term conditions management QOF: CAN001 The House of Care takes a whole system approach to LTC management. It makes the person central to care. It is about aligning levers, drivers, evidence and assets to enhance the quality of life for people with long term conditions no matter what or how many conditions they have. NG56 TCST s 4 Point CCR model End of Treatment Holistic CCR QOF: CAN003 92

93 Cancer rehabilitation Stratified follow up Recovery package Summary of the LWBC offer for patients Priority Delivered by? Funding source Benefits Holistic Needs Assessments Acute care OPA tariff Person centred care, quality of life, supported self management Treatment summaries Acute care OPA tariff (end of treatment clinic) Coordinated care, supported self management Health & wellbeing clinics/events Acute care OR community (with acute care input) OR Charity Within tariff and/or charitable funds Person centred care, quality of life, supported self management Cancer Care Reviews Primary care QOF and/or locally commissioned service Person centred care, coordinated care, quality of life, supported self management, reduction in unplanned activity, cancer managed as a long term condition, integrated care planning. Stratified follow up pathways: breast, colorectal, prostate (hospital led) Acute care Tariff - cost neutral over 5 years (includes pump priming). Person centred care, quality of life, supported self management, increase outpatient capacity Prostate cancer stratified follow up pathway (primary care led) Primary Care Locally commissioned service or PMS contract Person centred care, quality of life, supported self management, care closer to home, increase outpatient capacity, QIPP savings (% reduction in price per patient). Consequences of treatment pathways Acute, community AND primary care, third sector. Lymphoedema tariff or block Mental health tariff, IAPT contracts Fertility (via IFR teams) Cancer rehab (regional guidance in development) Person centred care, quality of life, supported self management, QIPP savings (reduction in unplanned activity and length of stay). 93

94 04 Variation in provision and outcomes in London Liz Price Transforming London s health and care together 94

95 20 Year Prevalence in England (Crude Rate) % of all cancers are either breast, prostate and colorectal. In London, there were 2690 people per 100,000 with a common cancer. Sources: Public Health England (NCIN), Population estimates (ONS) 95

96 Five-year age-standardised net survival (%) for adults diagnosed with cancer in London By tumour type. Data not yet available for all cancers by STP. Bladder Prostate Cervix Breast Lung England London Colon Stomach Oesophagus Net survival (%) 96

97 Q50 patient definitely given enough support from health or social services during treatment CCG

98 Q51 patient definitely given enough support from health and social services after treatment CCG

99 Q53 Practice staff definitely did everything they could to support the patient CCG

100 NHS CENTRAL LONDON (WESTMINSTER) CCG NHS BARKING AND DAGENHAM CCG NHS BARNET CCG NHS CAMDEN CCG NHS CITY AND HACKNEY CCG NHS ENFIELD CCG NHS HARINGEY CCG NHS HAVERING CCG NHS ISLINGTON CCG NHS NEWHAM CCG NHS REDBRIDGE CCG NHS TOWER HAMLETS CCG NHS WALTHAM FOREST CCG NHS BRENT CCG NHS EALING CCG NHS HOUNSLOW CCG NHS HAMMERSMITH AND FULHAM CCG NHS HARROW CCG NHS HILLINGDON CCG NHS WEST LONDON CCG NHS BEXLEY CCG NHS BROMLEY CCG NHS CROYDON CCG NHS GREENWICH CCG NHS KINGSTON CCG NHS LAMBETH CCG NHS LEWISHAM CCG NHS RICHMOND CCG NHS SOUTHWARK CCG NHS MERTON CCG NHS SUTTON CCG NHS WANDSWORTH CCG NHS WEST ESSEX CCG % Achievement GP QOF CAN001: Cancer Register Compliance TCST aims to analyse reported prevalence rates between CCG registers and PHE cancer registers. We know there is a difference! CCG Achievement (%) NHS CENTRAL LONDON (WESTMINSTER) CCG 97.1 NHS BARKING AND DAGENHAM CCG NHS BARNET CCG NHS CAMDEN CCG NHS CITY AND HACKNEY CCG NHS ENFIELD CCG NHS HARINGEY CCG NHS HAVERING CCG NHS ISLINGTON CCG NHS NEWHAM CCG NHS REDBRIDGE CCG NHS TOWER HAMLETS CCG NHS WALTHAM FOREST CCG NHS BRENT CCG NHS EALING CCG NHS HOUNSLOW CCG NHS HAMMERSMITH AND FULHAM CCG NHS HARROW CCG NHS HILLINGDON CCG NHS WEST LONDON CCG NHS BEXLEY CCG NHS BROMLEY CCG NHS CROYDON CCG NHS GREENWICH CCG NHS KINGSTON CCG NHS LAMBETH CCG NHS LEWISHAM CCG NHS RICHMOND CCG NHS SOUTHWARK CCG NHS MERTON CCG NHS SUTTON Sources: CCG HSCIC QOF Data ( NHS WANDSWORTH CCG NHS WEST ESSEX CCG CAN001 - Cancer Register Compliance ( ) 100

101 NHS GREENWICH CCG NHS BROMLEY CCG NHS CENTRAL LONDON (WESTMINSTER) CCG NHS HARROW CCG NHS HAMMERSMITH AND FULHAM CCG NHS HARINGEY CCG NHS ENFIELD CCG NHS KINGSTON CCG NHS CROYDON CCG NHS WEST ESSEX CCG NHS CAMDEN CCG NHS LAMBETH CCG NHS SOUTHWARK CCG NHS HAVERING CCG NHS NEWHAM CCG NHS REDBRIDGE CCG NHS BARKING AND DAGENHAM CCG NHS WALTHAM FOREST CCG NHS TOWER HAMLETS CCG NHS BARNET CCG NHS WEST LONDON CCG NHS WANDSWORTH CCG NHS BEXLEY CCG NHS SUTTON CCG NHS LEWISHAM CCG NHS MERTON CCG NHS ISLINGTON CCG NHS EALING CCG NHS HOUNSLOW CCG NHS CITY AND HACKNEY CCG NHS HILLINGDON CCG NHS BRENT CCG NHS RICHMOND CCG % Achievement GP QOF CAN003: Patient Review within 6 months of diagnosis (usually during treatment) There are no quality standards associated with the QOF measure CCG Achievement (%) NHS GREENWICH CCG NHS BROMLEY CCG NHS CENTRAL LONDON (WESTMINSTER) CCG NHS HARROW CCG NHS HAMMERSMITH AND FULHAM CCG NHS HARINGEY CCG NHS ENFIELD CCG NHS KINGSTON CCG NHS CROYDON CCG NHS WEST ESSEX CCG NHS CAMDEN CCG NHS LAMBETH CCG NHS SOUTHWARK CCG NHS HAVERING CCG NHS NEWHAM CCG NHS REDBRIDGE CCG NHS BARKING AND DAGENHAM CCG NHS WALTHAM FOREST CCG NHS TOWER HAMLETS CCG NHS BARNET CCG NHS WEST LONDON CCG NHS WANDSWORTH CCG NHS BEXLEY CCG NHS SUTTON CCG NHS LEWISHAM CCG NHS MERTON CCG NHS ISLINGTON CCG NHS EALING CCG NHS HOUNSLOW CCG NHS CITY AND HACKNEY CCG NHS HILLINGDON CCG NHS BRENT CCG NHS RICHMOND CCG NOTE: This metric uses a 15 month reporting cycle therefore it represents patients diagnosed from Jan 15 Mar Sources: HSCIC QOF Data ( CAN002 - Patient Review Within 6 Months of Diagnosis ( )

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104 05 Consequences of treatment: Case study and Q&A Dr Karen Robb & Dr Philippa Hyman, TCST David Jillings, Pelvic Radiation Disease Association Transforming London s health and care together 104

105 PELVIC RADIATION DISEASE ASSOCIATION HELP & INFORMATION FOR BOTH PATIENTS & HEALTHCARE PROFESSIONALS VISIT US AT www. prda.org.uk

106 Transforming Cancer Services Team for London Cancer Rehabilitation Dr Karen Robb, Macmillan Rehabilitation Clinical lead 106

107 The model of rehabilitation services 107

108 Background: developing a helicopter view. Poor awareness of the scope of rehabilitation and the fact that rehabilitation happens along and across every pathway of care Little to guide commissioners, providers & others on what good looks like and how to measure it Lack of quality data relating to many aspects of rehabilitation service delivery Developing the workforce is key to the delivery of better outcomes Networks are an important enabler for the sharing and dissemination of good practice Myriad opportunities for transformational change within the current health and social care landscape.

109 Supporting better lymphoedema care

110 Cancer Rehabilitation Scoping Work Led by KR, funded by Macmillan Cancer Support Stakeholder engagement activities: Task & Finish group Engagement event Focus groups with commissioners Conclusions and work plan for 2017/18 ratified by LWBC board and Cancer Commissioning Board Report available at: Cancer Rehab Scoping report Youtube video at: YoutubeCancerRehabScopingreport

111 Scoping Report: Findings The commissioning of cancer rehab in London is fragmented and poorly co-ordinated and this can leave services vulnerable and impact on patient care. There is a clear need for guidance to improve the commissioning of cancer rehabilitation in London. There are numerous challenges to overcome: Economic challenges Understanding/profile of cancer rehabilitation Changing demographics of service users Workforce Data/metrics Availability of services Quality of services System leadership.

112 TCST workplan for 2017/18 Produce commissioning guidance that will include: Clear expectations on what cancer patients need from specialist and generic services (hospital, community, third sector) throughout the cancer treatment pathway. A model of care for cancer rehabilitation, to show what good looks like. Comprehensive mapping of services. Recommendations for monitoring quality and service evaluations. References to best practice models and case studies. Recommendations for managing transition points between health, social care, third sector. The financial impact/assumptions where possible. Identification of key education and training needs

113 Transforming Cancer Services Team for London Psychological Care Pathway for People affected by Cancer 13 th July

114 Commissioning guidance published

115 Recommendations from the guidance 1. Timely access to commissioned support should be available for the whole cancer pathway. Throughout the pathway people with cancer should be actively informed of the potential need for psychological support and given guidance on access and availability. 2. Individuals should have access to a range of emotional and psychological support according to need. 3. Psychological support should be available to families and carers. 4. All health and social care staff involved in cancer care should have education, training and supervision that enables them to identify emotional problems and provide psychological support at an appropriate level. 5. Commissioners should ensure that Information and Support Centres (ISCs) are available at all acute trusts. 6. All people living with cancer should be offered a Holistic Needs Assessment with care planning at key points along the pathway. 7. Community provision for emotional and psychological support should be supported and developed. 8. Specific groups should be proactively supported. For example: men, people with severe and enduring mental illness, those who do not speak English as a first language, older people etc. 9. Psychology services providing support to cancer centres should be located on-site. 10. Co-production with people affected by cancer and their carers should be integral to service development. 115

116 But the guidance has only taken London so far We recognise that commissioning and provision of psychological support remains uncoordinated. The pathway is unclear, from diagnosis of cancer through to living with cancer as a long term condition and end of life. Service level quality and productivity standards have not been agreed for London. Macmillan has funded the TCST to develop a pan London: end to end psychological care pathway and service specification. Dr Philippa Hyman, a clinical psychologist, is leading this project from January December 2017, three days per week. Philippa is working very closely with our partners and service users through a working group. On May 4 th 2017 a first Stakeholder event was held to develop the pathway and principles for the specification. 116

117 Key themes from May 4 th event Patient must be at centre of pathway Activity needs to be described at different levels Concern at inequity of services Pan-London e.g psychooncology services, IAPT waiting times Appropriate training needed at levels 1 and 2 in primary and secondary care Does the pathway take into account needs of BME groups, age, severity/complexity of mental health difficulties/harder to reach groups? Primary care/community-what is missing? Is there need for Level 2 provision within Primary Care? 117

118 Key principles Importance of patient choice-how can we enable people to make choices? Pathway must not be linear There needs to be flexibility and fluidity-recognition of changing needs and complexity (age, tumour type, point on the pathway) Consideration of whole family system Team working and collaboration must improve across whole pathway-especially between primary and secondary care Clinical supervision, support and training for CNS/Practice nurses/gps (junior and senior staff) 118

119 Contact us. If you have any further questions, or would like to become more involved in this work, please contact: Dr Philippa Hyman Clinical Psychologist and Macmillan Mental Health Clinical Lead 119

120 06 Primary Care development Sarita Yaganti Transforming London s health and care together 120

121 LWBC Training Needs Assessment for London 90% of patient contact in the NHS is through primary care Training Needs Assessments (TNA) tools were produced to help the pan-london Primary and Community Care Education Group (PCCEG) to: Support and engage with primary and community care providers in the cancer agenda Outline knowledge and training gaps across different disciplines within primary and community care. Inform the evidence for bespoke educational products, materials, share good practice in learning and teaching across the early diagnosis and living with and beyond cancer pathways. Support providers to attract and retain a sustainable and confident workforce. The aim of LWBC surveys was to understand: The role of primary care in the management of patients after a cancer diagnosis Their understanding the consequences of cancer treatment The role of healthcare professionals in managing cancer as a long term condition where appropriate 121

122 Learning gaps General training on consequences of cancer treatment Specific to consequences to cardiovascular health Specific to consequences to bone health 122

123 Consequences of treatment: cardio 123

124 Consequences of treatment: bone health 124

125 Fewer than 6% of GPs and 4% of nurses had received general education on the consequences of cancer treatment that patients may develop over time. 41% of GPs and 36% nurses stated that they received a small amount of training. I know nothing about cancer and many nurses don't, because it depends what area of nursing you go into when you qualify. There is a huge pull on putting over challenging demands on nurses by GPs and "assume" we know how to manage complex cases. A huge classroom based course would need to be implemented, not some e-learning module that everyone finds useless in the real world. There needs to be role play and you would need to teach us how to manage depression and anxiety, because again, no training available for that. We would also need counselling ourselves to manage the emotional aspect practice nurse 125

126 Breakdown on survey responses 138 responses received from GPs and nurses on the LWBC survey. 100% nurse and 67% GP respondents are female. The majority of respondents were not Macmillan professionals or cancer leads for their CCGs or practices. Most respondents describe their practices as urban. There was almost an equal split between full-time, nearly-full time and part-time working patterns for both GPs and Nurses. 92 % of GPs and 96% of nurses have personal experience of cancer through a diagnosis of a close family member such as a parent, sibling, partner/spouse or child. The majority of the responders to the survey are from CCG areas in South London. No responses were gained from Outer North East London, outer north London or West Essex. 126

127 Cancer Care Reviews requires GPs to carry out a one-off cancer care review at a maximum of 6 months post cancer diagnosis. Despite the incentive offered by QOF, the majority of GPs offered CCRs opportunistically rather than prescriptively 58% of respondents use a CCR template to record the CCR which may provide some insight into why only half of the GPs agreed that the CCRs are useful to patients. TNA surveys highlighted that both GPs and primary care nurses welcomed training opportunity for understanding consequences of cancer treatment. More importantly, training must ensure confidence levels are increased in managing patients regardless of whether patients are at the start of the cancer pathway and under the care of hospital consultants or have finished treatment and are living beyond their cancer diagnosis. 127

128 Barking and Dagenham Barnet Bexley Brent Bromley Camden Central London City and Hackney Croydon Ealing Enfield Greenwich Hammersmith and Fulham Haringey Harrow Havering Hillingdon Hounslow Islington Kingston Lambeth Lewisham Merton Newham Redbridge Richmond Southwark Sutton Commissioning Group Tower Hamlets Waltham Forest Wandsworth West Essex West London Consortium Skipped question Breakdown by CCG 70 Individual responses

129 CCRs in practice We asked a group of GPs from across London how they conduct CCRs: 82% of GPs said that they conduct cancer care reviews in practice. 74% use the QOF CCR template 14% use the Macmillan CCR template 12% didn t know what template they used 53% conducted review face to face with the patient 41% had a mixture of face to face and telephone consultations 6% conducted the cancer care reviews without the patient 60% of the respondents said they receive a Treatment Summary from secondary care. 24% didn t and 16% of the GPs didn t know if they received the summary 33% felt their consultations catered to their holistic needs 37% were not holistic in their nature and 30% were not sure CCR appointment lengths varied greatly from 2 40 minutes with an average of minutes depending on the complexity of the cases 129

130 Some other interesting comments I don't really know what they are/ what would be in them so difficult to be sure, but if they are what they sound like they are then probably. -GP when asked about Treatment summaries CCRs gives an opportunity to discuss what other services and support may be required -nurse once I refer the patient and they are under the oncologist, I rarely see them, its as though they are kept in a bubble within the oncology services. once they are discharged (e.g. breast cancer post follow up period) they are then dumped on my lap with no clear instructions on when to stop for e.g. tamoxifen and what the pathway is if a lump reappears. refer back through 2ww or is there a back door for such patients? - GP There has been much said about late presentations, I examined a case review of a patient whose symptoms suggested cancer but took over a year to get sigmoidoscopy (mainly due to the patient refusing the procedure and only relenting when offered a "virtual" colonoscopy by Gastroenterology) - GP 130

131 07 How can TCST help? Liz Price Transforming London s health and care together 131

132 Key messages The numbers of people surviving cancer are increasing, and people are also living longer following a cancer diagnosis. Cancer is a long term condition. 70% of people with cancer have at least one other long term condition. Significant need arising from consequences of treatment can be prevented or better managed. 15 months after diagnosis, people with cancer are more likely to use urgent and emergency care services compared to others in the same age and gender groups. The recovery package and stratified follow up needs to be integrated into cancer pathways and extend across secondary and primary care to provide co-ordinated and holistic care/support. 132

133 TCST s LWBC projects 2017/18 Area of focus projects Primary care 4 point CCR model evaluation tools Support CCGs to pilot the primary care cancer checklist Continued support to STPs with roll out of primary care prostate pathway Cancer training programme including training needs analysis tools, education prospectus, online portal Primary Care Nurse Lead role at STP level (Macmillan) Education support to new LWBC Primary Care Fellows role Inclusion of LWBC within safety netting systems Mental health (Macmillan funded) Best practice pathway for psychological care Service specification for commissioners Cancer rehabilitation (Macmillan funded) Cancer rehabilitation commissioning guidance Cancer rehab improving quality toolkit Exercise referral scheme commissioning guidance Support to STPs in commissioning best practice lymphoedema services Recovery package & stratified follow up Refresh of commissioning guidance Commissioning models for RP and SFU (Transformation funding) 133