Programme Board deep dive session. Identifying people who are likely to be in the last year of life

Transcription

1 Programme Board deep dive session Identifying people who are likely to be in the last year of life 9 th August 2017 Chaired by: Professor Bee Wee, National Clinical Director for End of Life Care NHS England

2 Purpose of the session: To provide an overview on why identification is important; what the current situation is and some of the tools available To hear different perspectives from across the system on identification including: people with lived experience; clinicians/providers and commissioners To inform the scope of a project NHS England will lead in this area to improve identification of those in the last year of life and agree actions and next steps across system

3 Throughout the presentation - consider the following questions, which we ll come back to at the end: What mechanism should we use for supporting better identification? Should we be using prognostication tools? If so, how do we encourage /enable use of the tools? Are there any barriers or opportunities not already raised? Is there any other national work we need to be aware of which may have an impact on this project? What leverage options do we have? What else do we need to consider? What are the agreed actions and next steps?

4 Scene setting: context

5 Why? For the person Opportunity to initiate conversations about important decisions now, for future and in parallel Optimise symptom management and quality of life Encourage person to consider and discuss views and preferences with family and those close to them

6 Why? For clinicians and system Triggers proactive approach and MDT involvement Documentation: Facilitates information sharing across organisational boundaries Data monitoring for inequalities Pitfalls with over-identification Aiming for the right outcomes

7 Current situation Identification patchy, often not timely GP specialist: who triggers? Cancer vs non-cancer difference in GP registers: 48-66% of people with cancer on register vs <20% non-cancer

8 Tools to assist identification CLINICAL JUDGEMENT, supported by: Surprise question Gold Standards Framework Proactive Identification Guidance (ex-prognostic Indicator Guidance) Supportive and Palliative Care Indicators Tool (SPICT) Palliative Performance Scale Palliative Prognostic Index Prognosis in Palliative Care.

9 Accuracy of Surprise Question Systematic review: 22 papers 25,718 estimates: clinician intuition correct in 82% Meta-analysis: Correct prediction of outcome: 74.8% Slightly higher as more imminent: 76.4% Doctors slightly more accurate than nurses: C-statistic: (docs) vs (nurses) Accuracy better in cancer: 78.6% (cancer) vs 76.1% (renal) vs others (72.3%) But low proportion of deaths in each study (16% overall) and low numbers of high quality studies included Ref: White et al, 2017

10 Discussion today. How can we improve identification or recognition of people with advanced conditions who are at risk of deteriorating and dying, such that they could benefit from holistic needs assessment and proactive care planning? Whilst avoiding: inherent inaccuracies in prognostication, and pitfalls of over-identification?

11 A Service user perspective Tony Bonser Patient & Public Voice representative Diana Robinson Patient & Public Voice representative

12 Clinicians/service providers perspective Catherine Millington-Saunders RCGP and Marie Curie National EoLC Clinical Champion David Warriner & Dr Lucy Flanders National Medical Director s Clinical Fellows NHS England

13 1 3 General Practice Deep Dive Identification Dr Catherine Millington-Sanders RCGP and Marie Curie National EOLC Clinical Champion 9 th August 2017

14 Main Funding Sources GMS and PMS contracts QOF and Clinical Disease Registers National or Locally Enhanced Services

15 GMS and PMS contracts General Medical Services The contract provides a global sum, which is determined by linking the amount paid to a practice to the needs of its registered patients. Personal Medical Services rather than a global sum, PMS providers are paid a fixed annual rate for the provision of services. This is another way of allowing them to tailor their services to meet local needs.

16 QOF PC Clinical Disease Register The value of a QOF point for 2016/18 is

17 Rise in multi-morbidity

18 And complexity Systems on the left, the population is on the right

19 Why is this Important to General Practice

20 Traditional bio-medical model History Examine Investigations Diagnosis Treat Review What is the problem and how does it affect you Physical or mental state Blood tests x- rays, scans etc. Differential or absolute diagnosis of the presenting problem Medication advice, surgery and/or referral Reassess diagnosis and/or impact of treatment Of course, life is not so easy and anyway medicine is rarely a simple straight forward linear process!!!

21 Modeling Care - LTC/Dementia/Frailty/EOLC Top 20% takes =80% cost of total Top 5% takes = 65% cost of total 0.5 % 4.5 % 20% VHR Very High Risk - Patients/YR HR High Risk Patients/YR Community Services (a)proactive risk stratified populatio n + clinical judgment Modeling Care (b)reactive - clinical

22 Annual admission rate per 1000 patients Impact on the System Potentially preventable admission Other emergency admissions No of conditions And on us!

23 Medical or Social Model? Crisis plan, focus on biomedical solutions passive involvement Reactive Proactive Neither is right or wrong it depends on context Support planning focus on biosocial solution active involvement

24 MDT

25 A proactive social model Care and Support planning: a consultation model for Long Term Conditions Page 11 Think Local Act Personal, Personalised care and support planning tool. Available at: org.uk/personalised-care-and-support-planning-tool

26 Purpose UK General Practice: Quality Improvement Standards For Advanced Serious Illness + EOLC Free, self-directed resource for practices Robust, evidence-based quality improvement step-by-step guidance To inspire, support and enable general practice to improve EOLC quality and outcomes, at scale.

27 The 8 Standards Standard 1: Professional and competent staff Standard 2: Early identification Standard 3: Carer Support - pre and post death Standard 4: Seamless, planned, coordinated care Standard 5: assess unique needs of the patient Standard 6: Quality care during the last days of life Standard 7: Care after death Standard 8: General Practice being hubs within Compassionate Communities

28 Next steps? RCGP Quality Improvement team review Working Group of practicing clinicians/commissioners/legal/ PPI for independent review and challenge June 2017 Pilot practices/ CCGs to commence Sept/Oct 2017 Pilot evaluation and model evolution Feb-Mar 2018 Wider implementation and evaluation to start April 2018

29 Dr Catherine Millington-Sanders RCGP and Marie Curie National End of Life Care Clinical Champion For more information: Acknowledgement: CCSP slides from Dr. David Paynton Clinical Lead for RCGP Centre for Commissioning

30 IDENTIFICATION OF PATIENTS AT THE END OF THEIR LIFE C O N D I T I O N S P E C I F I C G U I D E Dr David Warriner and Dr Lucy Flanders National Medical Director s Clinical Fellows NHS ENGLAND

31 BACKGROUND The Ambitions for Palliative and End of Life Care focuses on 6 key ambitions. This is further supported by the foundation of Personalised Care Planning. everyone approaching the end of life must be offered the chance to create a personalised care plan.

32 BACKGROUND The focus of end of life care is often on managing patients with a cancer diagnosis We identified that there is a less unified approach to those with noncancer diagnosis, despite the numbers of elderly patients with multiple co-morbidities and chronic disease The numbers of patients approaching the end of life with multiple morbidities is increasing and it was felt necessary to think about how guidance could be developed to help in the management of this cohort Decision to hold a scoping workshop with a multidisciplinary group of generalists and specialists with an interest in end of life care

33 SPECIALIST INTERVIEWS Conducted with a range of senior healthcare professionals e.g. commissioners, NCD s, specialist nurses, GP s and specialists. Designed to feed into the workshop and help shape the input and output Common themes : multi-morbidity, community, identification transfer of patients everyone's responsibility prognostic uncertainty

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35 NON-CANCER WORKSHOP KEY THEMES When is the right time to have the conversation? Interface between primary and secondary care- documentation, conversations, discharge summaries Who should be having the discussion? primary/secondary/palliat ive care? Importance of using the right language Complex patients, therefore seen by multiple specialties who takes the lead? Unpredictable disease trajectories Every transition between care setting, should be an opportunity for a discussion Poor evidence base around prognostic indicators

36 CONCLUSIONS FROM THE WORKSHOP A group of clinical fellows met to discuss the key themes raised from the workshop and to determine what they felt should be the outputs of the meeting A number of different options were considered What does good look like for end of life care in patients with a non-cancer diagnosis? Need to be solution not problem focused These were presented to the EOLC team Conclusion was to produce condition specific guidance for recognition and care of patients at the end of their life for the generalist

37 OUR PLAN Each fellow to compose a guidance document for their area of interest For there to be a common format for the guidance Introduction of a new toolkit named REACT Request input from experts, patients and specialist organisations

38 OBJECTIVES OF THE DOCUMENT To include key symptoms which allow identification of patients at end of life To include a patient perspective Condition specific top tips for managing the patient Encourage the involvement of other healthcare professionals early on Focus on the importance of communication involvement of the MDT team and shared decision making, in keeping with the Ambitions. Highlight available resources that may be less well known to healthcare professionals

39 OUR VISION Creation of a suite of documents Available to all healthcare professionals, but aimed at the generalist NHS England document, but supported by specialist organisations Dissemination through patient organisations, specialist societies, royal colleges

40 WHAT WE HAVE ACHIEVED SO FAR Two mature draft documents for respiratory and cardiovascular disease, with a third for liver disease in development Input received from NCDs Input received from British Lung Foundation, British Society for Heart Failure, British Thoracic Society Contact made with the RCGP

41 WHAT WE STILL NEED TO DO Consult expert patient groups Request a review of the document from the generalists Consider whether there needs to be a patient translated document Who is going to own this document? How do we measure impact? Requirement to keep document up to date- who is going to sustain this?

42 HOW CAN YOU HELP US? What do you think of the documents? Can you point us in the direction of expert patients? Where do you think the documents would be best placed? Any ideas for dissemination?

43 A commissioner perspective Jacqueline Lansley Director of Strategy, Commissioning & Procurement Integrated Commissioning Team NHS Southend CCG and Southend-on-Sea Borough Council

44 End of Life A South East Essex approach to identification

45 Identification (1) Identification happens via health and care professionals asking the simple question. would I be surprised if the patient died within the next 12 months? Health and care professionals range from GPs, Care Homes, Community Health, Hospice, Hospital, ambulance service etc Referrals are made to South East Essex Palliative Care Support Register (PCSR) PCSR maintained on SystmOne and managed by Community Health provider The benefits of being on the PCSR are better / more bespoke care, reduced admissions and a higher rate of achieving preferred place of death

46 Identification (2) SEE total population is circa 360K. National figures suggest that 1% of population will die per year of which 25% will be sudden / accidental We therefore expect for 2,700 people be in classed as EoL As at June 2017 the PCSR has 1307 patients registered as EoL Capacity to deliver enhanced services aside, there are circa 1400 patients in SEE who should be on the register This represents a challenge for SEE health and care providers to identify patients for the register

47 Identification (3) Other ways of identifying patients for the PCSR include; Serious Illness Conversation training; EoL champion within the Ambulance service; Treatment & Escalation planning; Macmillan GPs

48 Increasing identification (1) to increase confidence and raise profile of register Audit of Out of Hours (OOH) data for EoL patients; Making sure that we understand the types of service EoL patients require OOHs to ensure there is a benefit of being referred to the register Making sure the register is effective; Time of referral (i.e. early enough to make a difference to quality of life and not just referring in last days of life) Ensuring that there is enough staff to provide a high quality of care

49 Increasing identification (2) to increase confidence and raise profile of register Treatment & Escalation planning; Hospital working in partnership with community health and primary care to provide high quality care for EoL register patients One care record across the system; Access to care records from health and care providers from different organisations

50 Increasing identification (3) to increase confidence and raise profile of register Treatment & Escalation planning; Hospital working in partnership with community health and primary care to provide high quality care for EoL register patients One care record across the system; Access to care records from health and care providers from different organisations. Challenge is for the hospital to provide access to staff to SystmOne

51 Increasing identification (4) to increase confidence and raise profile of register GP training; Vast majority of interaction with potential EoL patients is with primary care Resource and efforts being made to encourage primary care to refer patients to register, eg serious illness conversation, Mac GP, Governing Body lead by examples etc

52 Key Challenges Ownership of referrals to the register; Timeliness of referrals to the register; Current capacity of register team and keyworkers to undertake advanced care plans; Resource required for SystmOne rollout at hospital; Engagement with wider system professionals for Treatment & Escalation plans Data

53 Questions for board discussion: What mechanism should we use for supporting better identification? Should we be using prognostication tools? If so, how do we encourage /enable use of the tools? Are there any barriers or opportunities not already raised? Is there any other national work we need to be aware of which may have an impact on this project? What leverage options do we have? What else do we need to consider? What are the agreed actions and next steps?