Introduction to the Gold Standards FrameworkDomiciliary Care Training Programme

Maggie Stobbart-Rowlands, Lead Nurse, GSF Central Team

“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

DeathEnd of Life Care

Supportive Care

Palliative Care

Final days/ Terminal Care

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

.

1) Specialists

2) Generalists - GSF

3) Lay People- general public

Hospice and Specialist Palliative CareWorkforce 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

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

1. Improve quality of care

2. Decrease hospitalisation and cost

33 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

HEAD

- knowledge

- clinical competence

- ‘what to do’

HANDS

- organisation

- systems -GSF - ‘how to do it’

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 bottlenecksthat 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

GSF 3 Steps

patients who may be in the last year of life and identify their stage (‘Surprise’ Question + Prognostic Indicator Guidance + Needs Based Coding)

current and future, clinical and personal needs (using assessment tools, passport information, patient & family conversations, Advance Care Planning conversations)

Plan cross boundary care and care in final days (Use Needs Support Matrix, GSF Care Plan/Liverpool Care Pathway and Discharge Information/Rapid Discharge Plan)

identifyidentify

assessassess

planplan

GSF Toolkit

ACP Dec 06 v 13

Gold Standards Framework and the Supportive Care Pathway Draft 7

Thinking Ahead - Advance Care Planning

Gold Standards Framework Advance Statement of Wishes The aim of Advance Care Planning is to develop better communication and recording of patient wishes. This should support planning and provision of care based on the needs and preferences of patients and their carers. This Advance Statement of wishes should be used as a guide, to record what the patient DOES WISH to happen, to inform planning of care. This is different to a legally binding refusal of specific treatments, or what a patient DOES NOT wish to happen, as in an Advanced Decision or Living Will. Ideally the process of Advance Care Planning should inform future care from an early stage. Due to the sensitivity of some of the questions, some patients may not wish to answer them all, or to review and reconsider their decisions later. This is a ‘dynamic’ planning document to be reviewed as needed and can be in addition to an Advanced Decision document that a patient may have agreed. Patient Name: Address: DOB: Hosp / NHS no:

Trust Details: Date completed:

Name of family members involved in Advanced Care Planning discussions: Contact tel: Name of healthcare professional involved in Advanced Care Planning discussions: Role: Contact tel: Thinking ahead…. What elements of care are important to you and what would you like to happen? What would you NOT want to happen?

Pt needs Support from hospital/SPC

Support from GP

Years

Months

Weeks

Days

Prognostic Indicator Guidance – PIG + Surprise Questions

After Death Analysis - ADA

Advance Care Planning – Thinking Ahead

Needs Support Matrix

Use of templates in Locality Registers

Passport Information

GSF 7 C’s

SupportSupport from your local trainer/ facilitator

2 whole day Workshops

GSF Resources • GPG• Workbook folder• DVD

2. Needs Based CodingIdentify 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:

1. Surprise question- ‘Would you be surprised if this person was

to die within the next year?’

2. Patient preference for comfort care/need

3. Clinical indicators

Suggested that all pts on register are offered an ACP discussion

The GoldGold 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 GSFPatients are enabled to

have a ‘good death’ 1) symptoms controlled2) 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

GSF in Domiciliary Care

Understanding what to do

Context of End of Life Care, GSF Training Programme, and next steps

Are we providing the right care for people with life limiting conditions

People admitted to hospital in the last stages of life

Assess– clinical needs

Do we know about people’s ‘personal preferences’

Lack of planning

Lack of consistency

Assess – personal needs

Are we supporting people at the end of life?

Communication – GPs/DNs

Lack of information re condition

Plan 1 Care in the final days

Are we working together as a team?

Key Question Key Topic Key Challenge

What is the importance of End of Life care, and the role of the Domiciliary care worker?

Are we identifying the people in the last year or so of life?

Communication

Lack of structure

Lone Workers Valued Consistency of carers Collaboration GP/DN

Identify – Needs Based Coding

Plan 2 Cross Boundary Care

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

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

Benefits to Patients of Cross Boundary GSF

Reduce hospitalisation1. Admissions avoidance policy

2. Reduced length of stay- better communication with hospitals – rapid discharge - better turnaround

3. Appropriate admissions criteria

4. Reflective practice as a team

5. 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 & FeedbackPlanning

GSF for Domiciliary Care Teams

Its about living well until you die

www.goldstandardsframework.org.ukinfo@gsfcentre.co.uk