End of Life Care Programme Update!

Eleanor Sherwen,

Programme manager

National End of Life Care Programme June 2011

It’s about living and dying well

In our society death seems to be considered as sex was to the Victorians- necessary but the less said about it the better!

An ageing population

England : The proportion of the total population aged 65 and over

Source :Office of National Statistics http://www.statistics.gov.uk/downloads/theme_population/NPP-2006/NPP06_NSOnline.pdf

0

5

10

15

20

25

2006  2010  2020  2030 

Proportion of all ages population

65‐74

75‐84

85+

• The demographic challenge add Graphs Gnomes and Higgingon• Rising expectations – leading to complaints please add references to

NCEPOD and HCC complaints• Political and public demands for best use of resources

The drivers for change

Actual and projected deaths England and Wales

Source : Gomes and Higginson; Where people die (1974–2030): past trends, futureprojections and implications for care., Palliative Medicine 2008; 22: 33–41

End of Life Care Strategy: Aims

1. Quality: To bring about a step change in the quality of care for people approaching the end of life

2. To enhance choice at the end of life

3. To reduce inequalities (e.g. Geographical and cancer vs. Non-cancer)

4. To prepare for the demographic challenge: increasing numbers of deaths, particularly amongst people over 85 years

5. To raise the profile of end of life care

End of Life Care Strategy England

Key elements:

Raising awareness of 

death and dying

Integrated service 

delivery

Workforce,  measurement, 

research, funding, national 

support

Societal level

Individual level

Infrastructure

What people say is important to them at the end of their life…..

Communication -Being listened to

Respect, dignity, and compassion

Seeing me as a person not a disease

My wishes respected wherever possible- including place of care

Timely access to services and equipment

Remember my family and support network

My spiritual and religious needs met

Being symptom free

Step 2

Assessment,care planning

and review

• Advance care planning - patient and professional information – planning for your future care (evaluation)

• PPC• ADRT information

for patients• Assessment

framework/ pilot (EoE)

Step 3

Coordinationof care

• Locality wide registers pilots(8 sites)

• DH initiatives Transforming community servicesIntegrated care pilots Personal budgets

Step 4

Delivery ofhigh qualityservices in

differentsettings

• AcuteHospitals

• Primary care – GSF/ADA

• “Route to Success”• Care homes

(volunteers)• Extra care housing

evaluation • Prisons• Hostels• Learning disabilities • QIPP

Step 5 & 6

Care in thelast daysof life and

care after death

• LCP neurological /hospital Audit

• Environments of care - King’s Fund

• Last offices• Bereavement

Pre pathway

RaisingAwareness

• Supporting NCPC National Coalition Dying Matters

• Member of Dying Matters

• National Awareness raising week

• Peer education programme

Commissioning, currency and pricing, provider development, service improvement

Spirituality, User involvement, Information/support for patients and carers

Workforce – competences, E-learning, methods of delivery, facilitators network

Discussionsas the end

of lifeapproaches

• Communications skills (introductory, intermediate, advanced) 12 pilots

• Clinical triggers - kidney, dementia Heart cancer neurological

Step 1

National End of Life Care Programme Work streams

Cross boundary working/sharing good practice, communications strategy, events ,website

Measurement - Intelligence network ,quality markers , VOICES

Social care

Death, dying and society

National Coalition – Dying Matters

Over 15,000 members

First Awareness week- March 2010

Second week was in May- events across the UK

Materials available on website

www.dyingmatters.org.uk

Volunteer Training programme about ACP

Developed in conjunction with Nottingham University and Dying Matters-

• Open, honest communication- development of competences/framework -

• Identifying triggers for discussion- condition specific, change in care setting, death of a spouse, episode of uncertain recovery ,surprise question Prognostication is very inexact

Step 1: Discussions as the end of life approaches

Why are EoLC discussions important? Finding the words- DVD and workbook

Communication extends far beyond the spoken word whether you are confronted with writing a letter, text, email, telephone call, using touch and making eye contact, your input will depend on your own self-esteem, confidence and experience as well as natural ability. Your thoughtfulness, skills and training will show themselves to those people with whom you are communicating, whether imparting an end-of- life diagnosis or supporting a person in the lifespan available Be prepared!

EoE Holistic Common Assessment

New guidance document for health and social care staff available on the website- Capacity, care planning and advance care planning in life limiting illness Increased implementation/uptake of Preferred Priorities for Care and GSF

Step 2: Assessment, care planning and review

New guidance for staff….

This guide covers…..

the importance of assessing a person’s capacity to make particular decisions about their care and treatment and of acting in the best interests of those who are assessed as lacking capacity to make these decisions.

the differences and relationship between care planning and advance care planning.

Preferred Priorities for Care

Uptake of the use of PPC continues grow across all care settings-

PPC being used within specialities including renal disease and COPD

Audits both locally and nationally show the benefits of the using the PPC

PPC national core team supporting role out and dissemination.

Leaflets and posters available to download and order.

Accessible version being produced

MD…….

We are Living Well but Dying Matters…

In this DVD, people with learning disabilities tell their stories and share their wishes to support other with learning disabilities to become more comfortable talking about dying, death and bereavement

• Strategic co-ordination with primary and community health services, social care and ambulance/transport services

• Co-ordination of individual care – 8 Test sites for locality end of life care registers- interim report on the website www.endoflifecareforadults.nhs.uk

Step 3: Co-ordination of care

• Dignified environment• Access to generalist and specialist support 24/7• Access to spiritual care• Access to appropriate information• Routes To Success Care Homes, Acute………………………………

Step 4: Delivery of high quality care in all care settings

Route to success series….

Coming very soon….

Route to success Prisons and

Occupational Therapists

A care home 'is' someone's home, one day it could be yours too …

Disease specific resources…

This document sets out to raise awareness of the supportive and palliative care needs of people living or dying with progressive heart failure, to facilitate the commissioning of services specifically tailored to meet those needs.

Its main aim is to provide links to information sources, resources and good practice in end of life care (EoLC) for people with dementia, particularly for those who work with people with dementia who are not EoLC experts and EoLC experts who are not particularly knowledgeable about dementia.

Co-ordination and multidisciplinary approach to care

Management of physical symptoms

Holistic care – psychosocial and spiritual aspects

Care at the end of life

Carers

Workforce, education and training

Commissioning health and social care services

• Continued uptake of LCP across many care settings- launch of version 12 • Review of needs and preferences for place of death• Recognition of wishes regarding resuscitation and organ donation-

DNACPR- South Central Unified policy-

Step 5: Care in the last days of life

• Recognition that end of life care does not stop at the point of death

• Timely verification and certification of death or referral to coroner- nurse verification of death policies

• Care and support of carer and family, including emotional and practical bereavement support.

• VOICES questionnaire- nationally

Step 6: Care after death

Care after death…..

Developed by the National End of Life Care Programme and National Nurse Consultant Group (Palliative Care), this guidance

Sets out key principles

Is intended as a guide for training, as well as for informing the development of organisational protocols for this area of care

Aims to provide a consistent view that accommodates England’s diverse religious and multi-cultural beliefs.

Workforce development

• Progress from SHA EoLC Workforce Leads using MPET funding

• E-learning for End of Life Care- (eELCA) –

• Pilots to review communications skill needs and provision at basic, intermediate and advanced level- report available of website www.endoflifecareforadults.nhs.uk

• Core competencies

• CNO team- NEoLCP contributed to High Impact Actions- Important Choices-where to die when the time comes

• Launch of the facilitators network- 0ver 230 members

First Webex/E-seminar

Challenge =

THE CHALLENGE OF A JOINED-UP PATHWAY

Shaping the Future of

Care TogetherNational End of Life

Care Strategy

Social Care Framework …launched July 10

Phase 1 Social Care Test Sites

8 test sites funded for short term projects focussing on the social care framework- each site has completed their reports and currently being evaluated by York University- hoped that this evaluation will be available late summer.

Phase 2…..

Reforming of the SCAG group

Establishing regional groups- social care and health care

LGBT, mental health and learning disabilities

Support for implementation……

QIPP and the End of Life Care Strategy

Taken as a whole, the strategy fits all the QIPP criteria, from quality to prevention: and implementation carries on for all the work people have established

The EoLC QIPP work stream concentrates on the early part of the pathway: identifying people as they approach the end of life and then planning their care: if we don’t get this right the rest of the strategy has no anchor.

QIPP will help us to accelerate this strand of the work

In the meantime, we need to ensure that services are in place to provide the care for patients and their relatives/carers, in the place of their choice.

Some of the challenges ahead

• Financial climate – cuts • Aging population

• Changes to the NHS and Social Care

Silo working – NHS LA’s Third sector Social care

• Speed for implementation

• Intelligence “what makes the difference” how do you measure

• Skills and knowledge required

• Uncertainty • Rapid changing policies

• Professional boundaries

“ It should not be down to ’luck’ and where we live in the country as to how we die, we all know death happens and we should be more prepared, human and caring”

Comment posted on the Patient Opinion

website www.patientopinion.org.uk

Contact us:Website

www.endoflifecareforadults.nhs.u

Email information@eolc.nhs.ukTelephone 0116 222 5103

National End of Life Care Intelligence Network

www.endoflifecare-intelligence.org.uk