Implementing the Recovery Package across acute and primary care. Dany Bell

Transcription

1 Implementing the Recovery Package across acute and primary care. Dany Bell National Treatment and Recovery Programme Lead

2 1. What we know about LWBC 2. Recovery Package interventions overcoming challenges to embed in practice what has been achieved so far!

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5 The survival rates are changing Total Prevalence - now Total Prevalence Maddams J, Utley M, Moller H. Projections of cancer prevalence in the United Kingdom, Br J Cancer 2012; 107:

6 Multi morbidity is the norm, not the exception Source: York Centre for Health Economics Research Paper 96

7 Projected prevalence of LTCs among PLWC No long-term conditions (LTCs) 2030 PLWC population = 4M 28% Estimated 3M PLWC will be living with at least one noncancer LTC 1 LTC 2 LTCs 3+ LTCs 22% 19% 31% 72% of people living with cancer will have at least one other LTC 0.9M 0.8M 1.3M

8 Estimated PLWBC Estimated PLWBC PLWBC estimated emotional and practical need, and support received 2,500,000 2,000,000 Later monitoring (beyond 10 years) People living with and beyond cancer with emotional needs Percentage of PLWBC with emotional need who received support 1,500,000 1,000,000 Early monitoring (5-10 years) 67% of PLWBC had emotional need 100% 80% 60% 43% No support received 500,000 0 Early monitoring (2-5 years) Rehabilitation 40% 20% 0% 57% Support received 2,500,000 2,000,000 People living with and beyond cancer with practical needs Percentage of PLWBC with practical need who received support 1,500,000 Later monitoring (beyond 10 years) 1,000, ,000 0 Early monitoring (5-10 years) Early monitoring (2-5 years) Rehabilitation 45% of PLWBC had practical need 100% 80% 60% 40% 20% 0% 29% 71% No support received Support received 8

9 Healthy lifestyles: Prevalence Only 5% of PLWC meet all healthy lifestyle 1 recommendations 12.5 % do not meet any. 95% do not meet at least one recommendation 79% do not eat 5-a-day million PLWC do not meet at least one of the healthy lifestyle recommendations for healthy eating, physically activity, smoking and drinking 1 alcohol. 77% are not active enough 27% are obese 2 3 If trends continue it is estimated that this number will grow to 2.73 million by % smoke 2 16% drink above recommended levels 2 are in need of support and do not meet at least one of the healthy lifestyle recommendations. This figure is the same for both people living with or beyond cancer and also carers. 4 1: Blanchard CM, Courneya K S, Stein K. Cancer survivors adherence to lifestyle behavior recommendations and associations with health-related quality of life: results from the American Cancer Society's SCS-II. Journal of Clinical Oncology 2008: 26(13), : Wang Z, McLoone P, Morrison DS. Diet, exercise, obesity, smoking and alcohol consumption in cancer survivors and the general population: a comparative study of individuals. British Journal of Cancer 2015; 112, : Department of Health. Improving Outcomes: A strategy for cancer. Second annual report. London: Stationery Office; Carers data taken from the general population statistics. 6% meet all healthy lifestyle recommendations, Source Busk D, Frosini F. Clustering of unhealthy behaviours over time. London. The Kings Fund;

10 There are many professionals who interact with people at the LWBC stage in both the clinical and non-clinical settings Prediagnosis Diagnosis Treatment & recovery Adjustment to living with & beyond Ongoing disease monitoring EOLC Post EOLC GP Info & Support Mental Health Professionals GP Radiographers Out-patient staff Mental Health Professionals GP Ward Nurses Practice Nurses Support Workers GP Practice Nurses Community Nurses Support Workers Community Pharmacists Generalist AHPs Mental Health Mental Health Professionals Professionals GP Radiographers Out-patient staff Practice Nurses Support Workers Community Pharmacists Mental Health Professionals Volunteer Bereavement Support Mental Health Professionals With the growth in the cancer population, enabling more cancer aware generalists particularly in non-acute settings will be key 10

11 Cancer Patient Experience Survey 2014

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13 Considerations in a person-centred approach 6

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16 No. affected in UK, up to at least 10 yrs post diagnosis 90, , , , ,000 <63,000 >80,000 Bowel dysfunction Bladder dysfunction Sexual difficulties Fatigue Pain Lymphoedema Hormonal symptoms 16

17 Different people will need different levels of support Relative five-year survival Estimated prevalence Estimated incidence Do well Organ confined prostate Testicular Kidney - Stage 1 Localised or regional breast cancer Cervix - Stage 1 Melanoma of skin Uterus - Stage 1 Hodgkin lymphoma Colorectal - Dukes A and B 1,170,000 56% 127,000 38% Intermediate Non-Hodgkin lymphoma Bladder Uterus - Stage 2-4 Kidney - Stage 2-4 Colorectal - Dukes C Ovary Myeloma Cervix - Stage 2-4 Metastatic prostate Distant breast cancer 460,000 22% 70,000 21% Poor health Brain Stomach Oesophagus Lung Liver Mesothelioma Colorectal - Dukes D Pancreas 180,000 9% 95,000 29% 0% 100% McConnell H, White R, Maher J. Understanding variations: Outcomes for people diagnosed with cancer and implications for service provision European Network of Cancer Registries Scientific Meeting and General Assembly

18 Macmillan Cancer Support 2014

19 Managing the challenges to implementing the Recovery Package and Pathway Redesign

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21 What is the aim? To improve the quality of experience for PLWBC To improve outcomes for PLWBC To meet challenge financially of providing this for more people living with cancer?

22 Impact of the recovery package For people living with and beyond cancer Increased quality of life Improved health and wellbeing More confidence in their ability to self-manage their health Make appropriate use of resources (eg. in ED and GP attendances) Live longer due to healthier lifestyle and better management of consequences of treatment Wider benefit Stratified pathways Fewer face to face follow ups Reallocation of resources, to focus on those with complex needs

23 What have been some of the challenges on the ground? A willingness to try out a different model to traditional model of follow up Integrating change across organisational boundaries Partnership working, particularly with external organisations Improving information relay across organisational boundaries Provider organisations putting aside competitive financial interest to construct a multi-organisational model Commissioners acceptance of fluidity during the change process IT challenges around HNA and remote monitoring

24 What have been some of the challenges on the ground? Accepting partnership working with patients using a person centred, partnership approach to consulting Having the skills to influence behaviour change in patients to adopt self care and lifestyle changes Change from 1:1 consulting to group activity for patients Increased move to self monitoring and taking responsibility for aspects of care

25 Professionals involved Cancer and other CNS Psychologists Consultants Dieticians Physiotherapists and Exercise Coaches Macmillan 1:1 / Cancer Support Workers Administrative Assistants Patient tutors Macmillan Citizens Advisors Volunteers Third party colleagues

26 Local example of Recovery Package Treatment Summeries Macmillan 1:1 Holistic Needs Assessments Macmillan CAB NBT Living Well Programme Living Well Event and Course Remote Monitoring Pre-hab Exercise Programme Nutrition Clinic

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28 Holistic Needs Assessments examples of implementation Different team implementation models to suit patients Gynae / germ cell HNA clinics Haematology postal Lung pilot with CSWs ehna pilot ipads for patients to do self- assessments in clinic at home prior to consultation CNSs / CSWs to do electronic care plan following assessments Care plan can be ed to GPs and dropped into EPR link to Treatment Summaries

29 What CNS s have told us are the benefits of ehna Provides an audit trail Avoids illegible handwriting Paperless system The care plan is automatically generated Patients score each concern individually Easier to share data between healthcare Patients can keep a copy of the assessment Assessment & care plan can be linked to the 65% 64% 62% 61% 55% 52% 52% 46% What do you consider to be the benefits of administering Holistic Needs Assessments electronically on a tablet as opposed to on paper? Base: Interim findings from ehna CNS Staff Survey 2015 (157)

30 How the ehna is patient centred I've received help/advice for the issues I was concerned about The discussion was more focussed than it would have been otherwise 54% 59% It gave me confidence to bring up concerns that I would have been embarrassed about The discussion with the doctor or nurse made me less worried about the issues I It made me bring up concerns I wouldn't have though of otherwise 36% 33% 33% 0% 10% 20% 30% 40% 50% 60% 70% Base: Patients who recall electronic assessment (100)

31 Number of concerns (green bars) Average score (0-10) (red dots) Uncovering unmet need 8, , , , Physical concerns Emotional concerns Practical concerns Family concerns Spiritual or religious concerns 0

32 Assessments completed 20,000 Care plans completed 16,000 Number of ehna live sites 72

33 Using data

34 Demographics of PLWC using ehna Over a third of PLWC reached by the ehna have been newly diagnosed with cancer. Breakdown of PLWC using ehna by pathway stage Breakdown of PLWC using ehna by treatment status Other 3% Other* 3% End of life care 0% Follow up 21% Supportive & palliative care 8% Newly diagnosed 36% Life prolonging 20% End of Treatment 11% Curative 69% On treatment 29% 34 34

35 Information needs of PLWC using ehna 55% of people using ehna expressed interest in the topics most closely related to self-management (diet, physical activity). Breakdown of information needs of PLWC using ehna Currently recorded 55% of information needs related to self-management, is a 15 percentage points drop since Dec 2013, with interest in complementary therapies showing the largest decrease (7 percentage points). The proportion of other types of support did not significantly change. Data not shown. Other support 15% Diet and nutrition 26% Support groups 17% Complementary therapies 19% Exercise and activity 23% 35

36 Demographics of PLWC using ehna Only 12% of PLWC using ehna have been assigned to a supported self-management pathway. Breakdown of PLWC using ehna by stratified care Self management 12% The appropriateness of supported self-management for each person varies depending on the type of cancer they have as well as their individual characteristics. It has been estimated that around 15%-50% of bowel cancer cases and 50%-70% of breast cancer cases could be assigned to selfmanagement. 1 This suggests that potentially more PLWC using ehna could be encouraged to selfmanage. Clinical follow-up - consultant or nurse led 88% CNSs can use the assessment to start conversations with patients about supported self-management, where appropriate. 1. NCSI. Living with and beyond cancer: Taking action to improve outcomes

37 Number of concerns* (green bars) Average concern score (0-10) (red dots) Physical & emotional concerns account for 80% of all concerns. Family concerns are ranked as having the highest impact on people s lives. 8, , , , Physical concerns Emotional concerns Practical concerns Family concerns Spiritual or religious concerns 0 *Concerns Checklist only 37

38 Worry, fear or anxiety Anger or frustration Tired/exhausted or fatigued Pain Money or housing Information giving is the predominant action for all types of concerns. 100% Top emotional, physical and financial concerns and actions taken as a result 75% Medication review/change 50% 25% 0% Signposting/ referral to specialist services Signposting/ referral to generalist services Information/ advice 38 38

39 Case studies North Bristol - used ehna data to support system redesign: Breast: changed follow up clinic to a CNS led telephone clinic at 6 months Guy s & St Thomas using ehna data for performance reviews Coventry & Warwickshire reviewing care plans within MDT to ensure patient centred care

40 Other sites have: identified a new Anxiety management project using the aggregate data to develop training for teams based on the highest concerns/information needs using the aggregate data in determining which subjects to include in their patient education days

41 Future developments: Assessments at home (just launched) Additional Languages Additional questionnaires ICD 10 codes Expand automatic uploading of care plans.

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43 Treatment Summaries examples of implementation CQUIN 25% of all treatment episodes would generate TS CQUIN pump priming to fund project manager time Somerset Cancer Register option Clinical dictation templates: surgeons, oncologists, CNSs, physicians. Saved to Clinical Document System, electronically accessed by GPs stretch CQUIN to 40% + active monitoring Triplicate pad Tariff for combined TS and HNA nurse led consultation

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45 Health and Wellbeing Events examples of implementation Macmillan grant Venues / staff / catering Initially site specific Evaluations (pre and post) Generic site specific sessions market place (PB, CAB) 2 monthly CNSs: ICE referrals Macmillan Cancer Support Workers send invites / coordinate events

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47 Healthy lifestyle Physical activity Diet Reoccurrence Fatigue Consequences of treatment

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49 Post-treatment with GP assessment and care planning Financial impact of cancer Patient awareness of prescription exemptions Possible late effects of cancer and treatment Information needs in primary care Referring to other support as needed

50 QoF points for cancer At present there are only 11 QoF points for Cancer Care There are 2 criteria Cancer 1 = 5 QoF points for a cancer register Cancer 3 = QoF 6 points for cancer reviews within 3 months of diagnosis

51 Is a structured approach to these cancer care reviews feasible, useful and desirable; and what is the evidence to inform these reviews? Key elements that might be relevant to a cancer care review for primary care were identified in a study with Glasgow University and Macmillan. These fell into in four main areas.

52 Physical needs of patients including: - The impact of cancer on quality of life - Side-effects of treatment - Fatigue, loss of energy, sleep disturbance -Medications management and symptom relief Psychological needs of patients including: - Difficulty adapting to a cancer diagnosis - Fear of recurrence, cancer spreading or death - Depression and anxiety - Need for reassurance and emotional support -Unhappiness with appearance and body image issues Information required including: - Information about cancer, treatment and side-effects - Likely prognosis and possibility of recurrence - Talking to others with the same experience - Support groups and counselling services -Diet and nutrition Social impact of cancer including: - Changes to routine or lifestyle - Financial impact and need for welfare advice (including form filling) - Impact of diagnosis on family and friends - Employment related issues (including loss of work role) - Social support (child care, housework, shopping, meal preparation)

53 PENNINE LANCASHIRE PRIMARY CARE LOCAL IMPROVEMENT SCHEME FOR CANCER CANCER CARE REVIEW WHO- practice nurse (or G.P.) WHAT For each new diagnosis of cancer the practice will offer a cancer care review within 3 months of diagnosis In addition to the basic requirement stipulated by QoF this review will also involve utilising the MacMillan Cancer Care review template. The 3 month cancer care review will include an assessment of individual patient needs and personalised cancer information prescription. A second cancer care review will be performed at 9 months after the diagnosis with a repeat of the MacMillan assessment template and relevant information prescription.

54 Solihull CCG Macmillan Primary Nurse Facilitator in CCG Driving the Recovery Package Senior engagement CQUIN for TS and HWBE Staff training Practice nurse leads CCR

55 Redesigning Follow-up - Stratified Pathways Complex specialised Care Complex Management and ongoing treatment by MDT professionals Shared Care Ability to participate in some self care but need intervention and support additional to Recovery Package and remote surveillance Supported Self Management Uses Recovery Package, information and signposting to manage own care with remote surveillance for monitoring 55

56 Results from a local implementation 98%, 95% and 60% of breast, colorectal & prostate cancer patients respectively were transferred to a lower risk follow up group

57 PROSTATE CANCER FOLLOW-UP PATHWAY Diagnosis phase Treatment decision phase Treatment phase Follow up phase MRI and +/- Bone scan *OPA Surgery MDT Pretreatment pathway MDT CNS OPA diagnosis clinic MDT Oncologist *Joint OPA oncologist / Urologist Hormone Therapy TWOC 2/52 Remote Monitoring /discharge to GP Treatment Plan & HNA *OPA Urologist Watch & wait *OPA Consultant /CNS Living Well event Telephone follow -up Active surveillance Treatment Summary & HNA Optional Living Well course 5/52 Professional led follow-up *Ring fenced slots Radiotherapy Oncology Centre Remote Monitoring Discharge to GP Telephone follow-up Professional follow-up Surgical patients with undetectable PSA 0.1-3/12 for year 1-6/12 for year 2 -Then if stable discharge to GP for 6/12 PSA for 5 years -Annual PSA after 5 years *Rapid re- access to ring fenced Patients stable PSA on hormones Patients on hormones with stable disease Patients on remote monitoring after 2 years with undetectable PSA Asymptomatic watchful wait patients with stable PSA *Rapid re- access to ring fenced slots Monitoring of surgical patients with detectable stable PSA - Phone call 3/12 for 1 year Patients on hormones with rising PSA -At 1 year if stable discharge back to GP *Rapid re- access to ring fenced slots with 2/52 Patients on active surveillance (? CNS) Patients on hormones with progressing disease Post-surgery patients with rising detectable PSA Patients with residual symptoms post treatment Watchful wait Pts with increasing PSA slots within 2/52 within 2/52 *Rapid re- access to ring fenced slots 2/52

58 Outcomes at local level Improved experience and support long term for patients and their carers Improved well being and confidence to lead a healthy lifestyle Care and advice at a point when people need it Growth and expansion of skills for CNS s to deliver self management Enthusiasm to disseminate new model across all tumour sites Saved follow-up outpatient slots and freeing up consultant time for more complex patients Reduced cost-effective model of care Development of an IT system for remote surveillance that can be rolled out to other organisations at low cost

59 What has helped Dedicated leadership across health communities or within organisations Administrative support dedicated time / free up CNS s and clinicians to redesign and implement change Cancer Support Worker role Effective evaluation Financial and practical support (charitable/sharing) Training for staff in CBT (level II psychology) Engagement with and involvement of users, allied health professionals etc. Funding for venues Use of champions to motivate others Engagement of medical colleagues Financial incentives or cost neutral approach whilst changing

60 Learning An alternative model of care can be delivered for cancer patients that truly meets their needs safely Enthusiasm, engagement and support of the clinical teams is very powerful in implementing change User input was been invaluable in informing development and changes Collaboration and partnership working across care organisations can be successful IT systems are essential to support this model of care Everyone needs to be on the same page!

61 What does good look like? Implementation of self management linked to Recovery Package interventions, pathway redesign, healthy lifestyle support Collaboration between acute and community providers, CCG s, users and third sector organisations in health economies to support improved LWBC outcomes Established evidence based new cost effective pathways supporting long term recovery and health and wellbeing of PLWC Embedding of new innovative roles and practices to improve the patient experience

62 What does good look like? A culture in which empowered and informed patients take more active roles in their recovery Seamless care between specialist and community providers Individual HNA, treatment summaries and cancer care reviews driving co-ordinated person centred care Transparent evaluation and reporting of services using standardised measures of outcome and patient experience that reflect an exceptional level of care

63 Strategic developments for Recovery Package Economic evaluation to develop a cost consequences analysis for commissioners Commissioning toolkit to support business planning for commissioning of the Recovery Package Impact of Recovery Package

64 Key Messages: 1. Early conversations and assessment to identify potential risks and need for early intervention 2. Early influence on healthy lifestyle to cope with treatment and recovery and reduce impact of consequences of treatment 3. Access to the right information to make decisions for their life 4. Cultural shift towards partnership working with PLWC at the centre of their care and decision making

65 Universal adoption and implementation of the Recovery Package within fully commissioned pathways! : A greater understanding of the needs of different groups LWBC A workforce trained to support new ways of working to promote person centred care PLWBC able to live the life they want to!

66 If you aren t in over your head, how do you know how tall you are? T.S Eliot

67 We cannot direct the wind, but we can adjust the sails. Author unknown

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