Introduction to the Gold Standards Framework Domiciliary Care Training Programme Maggie Stobbart-Rowlands, Lead Nurse, GSF Central Team GSF Domiciliary Care Good Practice Guide February 2011 Copyright © Used under licence by the Gold Standards Framework Centre CIC

“Its about living well until you die” Our aspiration is to deliver training and support that brings about individual and organisational transformation, enabling a ‘gold standard’ of care for all people nearing the end of life .

End of Life care is everybody’s business Do any of the people you care for ever die? Then you need to think about end of life care.

Clarification of Terms End of Life care ‘Care that helps all those with advanced progressive incurable illness to live as well as possible until they die’ Supportive Care Helping the patient and family cope better with their illness Palliative care specialist / palliative care -holistic care (physical psychological, social, spiritual ) Final days/Terminal care Diagnosing dying-care in last hours and days of life End of Life Care Supportive Care Palliative Care Final days/ Terminal Care Death

End of Life Care in Numbers 1% of the population dies each year 17% increase in deaths from 2012 60-70% people do not die where they choose 35% home death rate – 18% home, 17% care home 40% of deaths in hospital could have occurred elsewhere 75% non-cancer ,85% of deaths occur in people over 65 £19k non cancer ,£14k cancer - av.cost/pt/final year .

3) Lay People- general public 1) Specialists 2) Generalists - GSF 3) Lay People- general public Hospice and Specialist Palliative Care Workforce 5,500 Enabling Generalists Primary Care Care Homes Hospital Domiciliary care Workforce -2.5 m Public Awareness Community Care Carers Support etc Population 60m

The key role of generalist frontline carers ‘Its less about what you know… …its more about what you do and how you do it’ Identifying important triggers - being aware of patients nearing end of life Assessing needs and wishes Planning care - Knowing when and where to get help -Playing role in system – cross boundary care Communicating well-Sharing information GSF Domiciliary Care Good Practice Guide February 2011 Copyright © Used under licence by the Gold Standards Framework Centre CIC

What is The Gold Standards Framework? Enabling generalists in end of life care Frameworks to deliver a ‘gold standard’ of care for all people nearing the end of life “Every organisation involved in providing end of life care will be expected to adopt a coordination process , such as the GSF” DH End of Life Care Strategy July 08

Aim of GSF Aim is to develop an organisational -based system to improve the organisation and quality of care of service users in the last year/s of life in the community.

What does GSF aim to do? 3 Key messages  Improve quality of care  Decrease hospitalisation and cost  Improve cross boundary teamwork + collaboration

GSF is about … Enabling Generalists - improving confidence of staff Person- led -focus on meeting person and carer needs Care for all people -non-cancer, frail Pre-planning care in the final year of life -proactive care Organisational system change Cross boundary care- home ,care home, hospital, hospice, Care closer to home – decrease hospitalisation

Improve organisation of care Head Hands and Heart - systems -GSF - ‘how to do it’ HEAD - knowledge - clinical competence - ‘what to do’ HEART -compassionate care experience of care ’why’ - human dimension-

GSF Training Programmes GSF Primary Care From 2000- foundation GSF mainstreamed (QOF) 90% GP practices have palliative care register and meeting June 09 Next Stage GSF launched updated GSF New training programme + quality recognition GSF Care Homes From 2004 -Over 1500 care homes trained Developed training and accreditation programmes 100 / year accredited GSF Acute Hospitals From 2008 -Phase 1 pilot 15 hospitals Phase 2 Spring 2011 Improving cross boundary care GSF Domiciliary Care From 2011 –phase 1 –Manchester, Birmingham, Rotherham 8-10 domiciliary care agencies, 80-100 carers per agency

Deliver coordinated care in line with preferences

Three key bottlenecks that GSF helps with Identification of all patients particularly those with non cancer Difficult conversations with patients and families, advance care planning discussions Effective team pre-planning- predicting needs- change to more proactive care Overcome to avoid crises and deliver care more aligned to the wishes of patients and their families. GSF Domiciliary Care Good Practice Guide February 2011 Copyright © Used under licence by the Gold Standards Framework Centre CIC 16

GSF 3 Steps identify assess plan GSF Domiciliary Care Good Practice Guide February 2011 Copyright © Used under licence by the Gold Standards Framework Centre CIC

GSF Toolkit Advance Care Planning – Thinking Ahead Prognostic Indicator Guidance – PIG + Surprise Questions Passport Information Use of templates in Locality Registers Pt needs Support from hospital/SPC Support from GP Years Months Weeks Days Needs Support Matrix After Death Analysis - ADA

GSF 7 C’s

Support Support from your local trainer/ facilitator 2 whole day Workshops GSF Resources GPG Workbook folder DVD

2. Needs Based Coding Identify stage of illness- to deliver the right care at the right time for the right patient A - All – stable from diagnosis years B – Unstable, advanced disease months C – Deteriorating, exacerbations weeks D - Last days of life pathway- days

Identify- GSF Prognostic Indicator Guidance- identifying pts with advanced disease in need of palliative/ supportive care/for register Three triggers: Surprise question- ‘Would you be surprised if this person was to die within the next year?’ Patient preference for comfort care/need Clinical indicators Suggested that all pts on register are offered an ACP discussion

Goals of Care Person-centred’ care Considering Goals of Care, along with the advance care planning discussion, can help determine the most appropriate way forward , tailored to the needs of each person Includes considering admission to hospital, or inappropriate interventions eg PEG feeding, DNAR status, when the preference is for comfort care and quality of life. Includes quality of life issues and quality of death

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) Applications of learning from cancer pts to the other 3 out of 4 patients

Goals of GSF Patients are enabled to have a ‘good death’ 1) symptoms controlled 2) in their preferred place of choice 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.

Skills for Care and Skills For Health Common Core Competences: Care planning Symptom control Advance care planning Communication Skills

What are the issues you face in providing good end of life care?

The Challenges in Domiciliary Care Isolation/Lone workers Communication with others e.g. GPs, DNs Not being valued by other professionals No Pathways or plans for end of life care Lack of collaboration & identification of people at the end of life Inappropriate admissions at the end of life Confidence of staff

How GSF addresses these challenges Session 1 Context of end of life care and the role of the carer within the extended team Session 2 Identify people nearing the end of life Session 3 Assess – Clinical understanding of what to do

Session 4 Assess – Personal preferences Session 5 Plan- care in the final days of life Session 6 Plan – Cross Boundary Care

Reactive patient journey- MR B in last months of life- GP and DN ad hoc arrangements-no PPOD discussed or anticipated/no anticipatory care Problems with symptom control-high anxiety Crisis call e.g. OOH-no plan or drugs available Admitted to hospital (?Bed blocks?) Dies in hospital -?over intervention/medicalised Carer given minimal support in grief No reflection/improvements by team/PCT ? Inappropriate use of hospital bed?

GSF Proactive pt journey- Mrs W in last mths of life On SC Register-discussed at PHCT meeting DS1500 and info given to pt +carer(home pack) Home care team involved in planning & delivery Regular support, visits phone calls-proactive Assessment of symptoms-?referral to SPC-customised care to pt and carer needs Carer assessed including psychosocial needs Preferred place of care noted and organised Handover form issued –drugs issued for home End of Life pathway/LCP/protocol used Pt dies in preferred place-bereavement support Staff reflect-SEA, audit gaps improve care, learn

Better team-working and collaboration with GPs and others Talking a common language (incl coding) Earlier prediction of needs Advance Care Planning helps focus on personal goals of care Better agreed documentation eg DNAR Preparation eg anticipatory prescribing, LCP Better morale and mutual confidence

Benefits to Patients of Cross Boundary GSF GSF Patients Out of Hours flagged up as prioritised care passed on to doctor to phone back within 20 mins visit more likely if needed Hospital GSF patient flagged on system collaboration with GP and GSF register noted on readmission to hospital and STOP THINK policy and ACP car park free? ? open visiting Care Home care homes staff speak to hospital staff daily updating ACP & DNAR noted and recognised referral letter recommends discharge back home quickly Primary Care advance care plan – preferred place of care documented proactive planning of respite always get a visit on request better access to GPs and nurses easier prescriptions prioritised support for patient and carers coding collaboration

Reduce hospitalisation Admissions avoidance policy Reduced length of stay- better communication with hospitals – rapid discharge - better turnaround Appropriate admissions criteria Reflective practice as a team Proactive care- coding, communication, ACP, drugs, team planning, training etc

GSFDC Training Programme Assessment Before Assessment After Session 1 Training Event 6 Learning Sessions Session 6 Training & Feedback Planning GSF for Domiciliary Care Teams

Its about living well until you die www. goldstandardsframework. org Its about living well until you die www.goldstandardsframework.org.uk info@gsfcentre.co.uk