Gold Standards Framework in Care Homes Nikki Sawkins – GSFCH Lead Nurse 20/04/2017

Plan of session Context of GSF in End of Life Care What are the challenges? What is GSF in Care Homes ? Evaluation and Experiences of others Developments and Plans Are you interested? – Next Steps 20/04/2017

End of Life care Do any of your patients ever die? Then you need to think about end of life care. 20/04/2017

Clarification of Terms End of Life care Pts living with the condition they may die from- weeks/months/ years pts with advanced disease 3 types of pt (cancer, organ failure ,frail elderly /dementia pts ) ‘Ante-mortal’ care like ante-natal or early life care Supportive Care Helping the patient and family cope better with their illness not disease or time specific, ‘less end stage’ Preferred by some specialists- ‘everyone needs supportive care’ Palliative care holistic care (physical psychological, social, spiritual ) specialist and generalist palliative care Some regard as overlapping or following curative treatment Terminal care Diagnosing dying-care in last hours and days of life End of Life Care Supportive Care Palliative Care Terminal Care Death 20/04/2017

DEMOGRAPHIC TIME BOMB More people are living longer, with serious disease and increased symptom burdens Almost double life expectancy in 100 years Increased complexity in looking after patients with advanced disease at the end of their lives 20/04/2017

‘Why are we leaving it to luck?’ Joanne Lynn “What will we need when we have to live with a fatal disease? We need reliability, We need a care system we can count on- Doing RIGHT thing at RIGHT time To make excellent care routine we must learn to do routinely what we already know must be done All that it takes is innovation, learning, reorganisation and commitment” 20/04/2017

Added Value 2: Caring for people with non-malignant conditions and the frail elderly Death High Low Time Function Death High Low Time Function Organ failure 6 5 Cancer Death High Low Time Function GP has 20 deaths per year Vision for the future of pall medicine 3 trajectories 3 dimensions of need Hospice, hospital, and community including nursing homes Wide construct of palliative care But focus Dementia, frailty and decline 7 Other 2 20/04/2017

Key Factors with end of life care of elderly Multiple co-morbidities Increasing memory loss/dementia Difficulty predicting prognosis Difficulty predicting dying phase Complex social/ health factors Need protection from over intervening - eg DNAR, trolley deaths 20/04/2017

Place of death Higginson I (2003) Priorities for End of Life Care in England Wales and Scotland National Council Place: Home Hospital Hospice CareHome …………………………………………………………………………… Preference 56% 11% 24% 4% Cancer 25% 47% 17% 12% All causes 20% 56% 4% 20% 20/04/2017

Gold Standards Framework 3 Programmes of work: GSF in Primary Care GSF in Care Homes EOLC developments and support 20/04/2017

The Gold Standards Framework A framework to deliver a ‘gold standard of care’ for all people approaching the end of their lives A systematic approach to optimising the care delivered by healthcare professionals 20/04/2017

A good death for all “Our aim is that every person should be able to live well and die well in the place and in the manner of their choosing” But how? 20/04/2017

Gold Standards Framework in Community Palliative Care The Aim for Primary Care and Care Home teams: to develop a practice-based/care home based system to improve the organisation and quality of care of patients/residents in the last year/s of life in the community/care home So generalist better dovetail skills with specialists 20/04/2017

Head Hands and Heart of Community Palliative Care - process/organisation - systems - ‘how to do it’ HEAD - knowledge - clinical competence - ‘what to do’ HEART -compassion/care human dimension-’why’ - experience of care 20/04/2017

The Gold Standard of end of life care “The care of ALL dying patients is raised to the level of the best.” (NHS Cancer Plan 2000) 20/04/2017

GSF 3 Steps : ……then provide 3. Plan 2. Assess + communicate 1. Identify 20/04/2017

5 Goals of GSF Patients are enabled to have a ‘good death’ 1) Symptoms controlled 2) Preferred place of care 3) Safe + secure with fewer crises 4) Carers feel supported, involved, empowered, and satisfied. 5) Staff confidence, teamwork, satisfaction, co-working with specialists and communication better. 20/04/2017

7 Key tasks/ standards-The GSF 7 Cs C1 Communication SC Register and PHCT Meetings, Pt info, PHR, Advanced care planning (ACP) eg PPC C2 Coordinator Key Person, assessment tools eg PEPSI COLA C3 Control of Symptoms Assessment, body chart, SPC ,ACP etc C4 Continuity Out of Hours Handover form + OOH protocol C5 Continued Learning Learning about conditions on patients seen C6 Carer Support Practical, emotional, bereavement, National Carer’s Strategy C7 Care in dying phase- LCP / ICP for care in last few days 20/04/2017

Underlying assumptions of GSF Care for people who are dying is important! Most want to give best end of life care –GSF enables and encourages this Developed from primary care for primary care Developed and adapted for care homes by care homes - ‘from the bedside not the boardroom’ Raise awareness of dying pts and measures Framework not prescriptive -Adapt and adopt- Becomes standard practice -’this is what we do’ Patient/resident focussed- Proactive- Think of future needs Encourages creativity and pride in our work National momentum-Share learning and ideas with others If it was you………. 20/04/2017

In hours Proactive Palliative Care- Avoidance of crisis-eg GSF/GSFCH Anticipatory care helps avoid crises -improved support for residents, families + staff reduction in hospital/hospice admissions (12% reduction in crisis admissions at EOL - phase 2) achievement of preferred place of care/death (8% reduction Hospital deaths) ….and reduce fear 20/04/2017

GSF Supported Spread Cascade National team GSF Project group SHA, Ca Network Facilitators Co-ordinators 20/04/2017

GSF Spread UK wide Use of GSF About 3800 practices – over a third of all practices in England. Over 80% of PCTs Over half practices in Scotland, a third in Northern Ireland, beginning in Wales and other countries 20/04/2017

So… What do we know? 20/04/2017

GSF Evaluation Nationally Better identification and tracking of patients More noting+attaining preferred place of death Better communication, teamwork and planning Fewer crises/admissions Better organisation + consistency of standards eg use protocols, assessment tools, information, bereavement care , even under stress Better co-working with specialists 20/04/2017

GSF Evaluation Nationally Attitude, approach, awareness – qualitative factors that underpin the culture of practice, hard to measure, but often the most valuable Processes and patterns of working – practical system redesign processes that are more structured and formalised Outcomes – reduces hospital admissions, reduced hospital deaths, more advance care planning discussions GSF Evaluation by the University of Birmingham 20/04/2017

GSFCH Care Homes Planning- 2003/4- GSF adapted for Care Homes Phase 1 pilot- -May- Dec 04 12 care homes in 6 areas Report March 05 Phase 2 pilot-June 05- Feb 06 100 care homes with 35 facilitators-18 /28 SHAs Research study Birmingham University funded by Macmillan Phase 3 Programme -June 06- Feb 07 About 250 care homes – 3 bases –Crawley phase 3a Continuing evaluation Phase 3b – Crawley and Phase 4 Programme June 07 –March 08 Open and Commissioned areas. 20/04/2017

Stage III Consolidation + Sustainability Stage I Preparation Stage II Training Stage III Consolidation + Sustainability 3-6 months 4 workshops in 9 months 9 – 12 months  Awareness Raising Meeting Local Coordinators Meetings Workshop 1 Workshop 2 Workshop 3 Workshop 4 GSFCH Accreditation         ADA After Before Final Appraisal Ongoing ADA Enrolment of Care Homes 20/04/2017

Gold Standards Framework in Care Homes - GSFCH Aims To improve quality of end of life care To improve collaboration with primary care and specialists To reduce admissions to hospital in the last stages of life 20/04/2017

Context Half a million people live in Care Homes-about 1% Approx 20% people die in Care Homes 86% all deaths in people over 65, 51% in people over 80 For every NHS bed, there are 3 Care homes beds The sector employs about 1.2 million people People stay on average 2-2.5 years in Nursing Homes An average N. Home with about 30 beds might expect about 1 death/ month, or about a third/quarter turnaround /year 20/04/2017

“ If you are old and in a care home, you know you are probably going to die quite soon. Most older people don’t think that dying is a tragedy, though they do think that dying with unresolved issues is.” Prof Ian Philp National Director for Older people The Times Sat 3.6.06 20/04/2017

End of Life Care- Getting it right They’ll never forgive you if you don’t They’ll never forget you if you do 20/04/2017

Experience of GSF in Care Homes Attitudes, awareness and approach eg confidence all staff, care needs focus, proactive care Patterns of working, structure/ processes eg communication all staff, recording, information sharing Outcomes eg more advance care plans, fewer crises, better quality of dying, staff feel valued 20/04/2017

Does using GSF help patients with end of life care needs in care homes? It helps coordination and communication It helps confidence of staff It helps us focus and measure It helps kick start changes It helps specific things like needs based coding, Advance care plans, anticipatory prescribing, communication with GPs etc Y E S 20/04/2017

GSFCH Open Programme Plan Phase 4 -Walsall ADA ADA Preparation Introduction Consolidation consolidation/embedding July 2007 …………..First gear………….Second gear………..Third gear……….Fourth gear Workshops 26 Sept 07 5 Dec 07 27 Feb 08 7 May 08 20/04/2017

Four Gears Getting going Moving on 3. Gaining Speed 4. Cruising Coding, Register Meeting, Coordinator Moving on Assessment of symptoms + Advanced care Planning Out of hours continuity Education and reflection 3. Gaining Speed Education and reflection Carers and family support Bereavement (and staff) 3. Care in Final days 4. Cruising Sustain Embed Extend 20/04/2017

Phase 4 Evaluation 1. After Death Analysis – Electronic Format – Register on line Background information Last 5 patient deaths before and after GSF introduction What went well, what didn’t go so well, what could we do better. Feed back of information. 20/04/2017

Online After Death Analysis (ADA) Audit Tool 20/04/2017

Networking and speed-dating Sharing experiences with others – key to learning,finding solutions to some of the challenges, sharing good ideas, handy hints. Eurekas ‘Things that have worked for us……’ ‘Speed dating’- capturing specific topic issues Good Practice Guide – shared learning and experience 20/04/2017

SO WHAT! 20/04/2017

Reactive patient journey- MR B in last months of life- Care Home –no discussion wishes for end of life (only burial/cremation) -no PPOC discussed or anticipated Problems with symptom control-high anxiety Crisis call eg OOH-no plan or drugs available - GP sent ambulance Admitted to hospital – disorientated. Dies in hospital ?over intervention/medicalised Carer support in grief by care staff No reflection/improvements by care home/GP ? Inappropriate use of hospital bed 20/04/2017

GSF Proactive pt journey- Mrs W in last months of life Coded on Register-discussed at Care Home GSF meeting Focus of care at stage of life Regular discussion and planning with care home/GP/SPC - proactive care Assessment of symptoms -referral to SPC-customised care for resident Carer involvement in care/decision (residents wish) Advanced Care Plan completed with resident and family - Preferred place of care noted and planned. Handover form issued –ACP wishes – anticipatory drugs issued in care home End of Life pathway/LCP/protocol used Pt dies in preferred place- the care home fully supported by well trained staff. Bereavement support – for all . Staff reflect-ADA and SEA - audit gaps improve care, learn 20/04/2017

GSF and GSFCH is part of the jigsaw GSF/GSFCH is part of the jigsaw to enable proactive end of life care for all. 20/04/2017

GSF and Prognostic Indicator Guidance Development of a Prognostic Indicator Guidance paper – PIG, in consultation with national leads and organisations More challenging identifying patients with non-cancer for SC register Evaluation shows that 60% of practices are including non cancer patients on the GSF registers within 12 months of implementation 20/04/2017

GSF - Advance Care Planning GSF template includes: Thinking ahead - open questions - what matters to pt / carer - what to do and what not to do Proxy - who else involved (LPOA) Who to call in a crisis Preferred place of care & death Other requests eg organ donation / special instructions 20/04/2017

ACPs in care Homes Improved communication with residents and families early on Improved planning of care Reduced crises Helped formalise discussion using a tool Some gave to families, some senior nurses DNAR difficult- prefer ‘Allow Natural death’. Some found they were difficult discussions All liked having them – useful and clear 20/04/2017

Difficulties with ACPs Bring up the subject Communication difficulties Discussing options- ?unrealistic DNAR discussion Family tensions Staff resistance Updating them Communicating them 20/04/2017

20/04/2017

How do we cascade the information? - GSF Website 800 hits per day Information on GSF, resources and new developments Links to the online audit tool Plan to update for Autumn 07 with protected sections for registered practices, care homes and PCT facilitators/SHA leads 20/04/2017

For more information on GSF National GSF team – Judy Simkins - GSF / GSFCH Administrator Tel: 0121 465 2029 GSFCH LEAD Nurse - Nikki Sawkins nikki.sawkins@nhs.net Email: info@goldstandardsframework.co.uk Website: www.goldstandardsframework.nhs.uk NHS End of Life Care Programme www.endoflifecare.nhs.uk 20/04/2017