sutton’s joint end of life care strategy for adults and ... · sutton’s joint end of life care...

Sutton’s Joint End of Life Care Strategy September 2017 of 51

Sutton’s Joint End of Life Care Strategy for

Adults and Young People

2017 to 2020

‘I can make the last stage of my life as good as possible because everyone works

together confidently, honestly and consistently to help me and the people who are

important to me, including my carer(s)’

September 2017


Contents

Foreword ...................................................................................................................................................... 3

Strategic Partners and Stakeholders ...................................................................................................... 4

End of Life Care Strategy on a page ....................................................................................................... 6

1. Introduction .......................................................................................................................................... 7

2. Background ......................................................................................................................................... 8

3. National Policy Context ................................................................................................................... 10

4. Sutton: The Local Context .............................................................................................................. 14

5. People, Public and Provider Perspectives ................................................................................... 24

6. Our Priorities for 2017 - 2020 ......................................................................................................... 27

Appendix A: Review of Priorities in 2011 and Progress to Date ....................................................... 35

Appendix B: Review of Sutton’s position against the Ambitions for Palliative and End of Life

Care: a national framework for local action 2015 – 2020................................................................... 41

Acknowledgements .................................................................................................................................. 48

References and Other Useful Sources of Information ........................................................................ 50


Foreword

Everyone deserves to receive high quality, compassionate care at the end of their life and as such end of life care is a priority for Sutton CCG. Sutton’s Joint End of Life Care Strategy set out a vision for end of life care that aims to meet the palliative care needs of those thought to be in the last stage of life to enable them to live as well as possible until they die. Our vision is to structure end of life care services in a way that provides care and support that is needed by people, their family member, friend and/or carer during this time of life. This strategy builds on its predecessor Merton and Sutton End of Life Care Strategy that was published in 2011. Since this time we have made significant progress and implemented new models of care for end of life care services. The new strategy aligns itself with the recommendations of the National Palliative and

End of Life Care Partnership - Ambitions for Palliative and End of Life Care: A national

framework for local action 2015 - 2020. The national framework for action sets out six

‘ambitions’ – principles for how care for those nearing death should be delivered at local

level and eight principles which are the foundations to build and realise the ambitions.

Responsibility for implementing the ambitions of the new national framework spans the commissioner and provider spectrum, putting onus not just on Clinical Commissioning Groups (CCGs), but on providers, NHS England, Public Health England, local authorities and third sector organisations to take action, monitor progress and influence change. Acknowledging this challenge, the refreshed strategy sets the direction of travel for the next three years. We will seek to facilitate a compassionate approach to dying, raise awareness of dying through engagement with local communities, religious and faith groups in Sutton. We recognise that improving end of life care is a joint responsibility, involving a variety of organisations across health, social care, communities and the voluntary sector. Therefore our main priority will be to build on existing partnerships and create new relationships to drive up quality of care.

Lucie Waters, Managing Director of NHS Sutton CCG

Claire O Sullivan, Clinical Lead for End of Life Care, NHS Sutton CCG


Strategic Partners and Stakeholders


End of Life Care Strategy on a page Sutton’s Joint End of Life Care Strategy plan on a page for 2017 to 2020

Thro

ugh

Incr

ease

d id

enti

fica

tio

n o

f in

div

idu

als

ente

rin

g th

e la

st s

tage

of

thei

r lif

e

i Thro

ugh

ch

oic

e an

d p

erso

nal

ised

car

e s

uch

as

per

son

al h

ealt

h b

ud

gets

Thro

ugh

red

uct

ion

in d

eath

s in

ho

spit

al f

or

peo

ple

at

the

en

d o

f lif

e w

ho

se p

refe

rred

pla

ce o

f ca

re is

in t

he

com

mu

nit

y

Thro

ugh

red

uct

ion

in e

mer

gen

cy a

dm

issi

on

s to

ho

spit

al f

or

peo

ple

wh

o a

re a

pp

roac

hin

g th

e en

d o

f

life

thei

r lif

e as

a r

esu

lt o

f b

ette

r m

anag

em

ent

of

care

pac

kage

s

Thro

ugh

incr

ease

in p

eop

le w

ho

die

in t

hei

r p

refe

rred

pla

ce o

f d

eath

Thro

ugh

incr

ease

in t

he

nu

mb

er o

f ca

re h

om

e, u

np

aid

car

ers,

co

mm

un

ity

and

vo

lun

tary

se

cto

r st

aff

acce

ssin

g tr

ain

ing

and

su

pp

ort

in e

nd

of

life

care

.

Thro

ugh

incr

ease

in s

atis

fact

ion

of

ber

eave

d f

amili

es

By April 2018 we will: 1. Commission a local health and social care 24/7 End of Life Care Hub to support information/advice, assessment, care coordination,

information exchange, care planning and care delivery. 2. Promote choice and personalised care for those dying and their families in acute and community settings through the offer of personal

health budgets 3. Review use of Coordinate my Care across acute and community health and social care settings and its ability to achieve the shared

records by scoping other electronic integrated records and links across Sutton 4. Ensure good understanding of different religions, cultures and norms of communities especially in relation to end of life care and death

By April 2019 we will: 5. Develop local information packs for End of Life Care services and available support 6. Promote engagement with faith groups, cultural communities as well as diverse organisations that support people with life shortening

illnesses and those managing the difficulties of older people 7. Promote spirituality in end of life care to raise awareness and ensure people’s beliefs and wishes are respected and supported 8. Develop an information sharing protocol that will enable and support Sutton multiagency approach to End of Life Care, care planning

and shared records 9. Review care homes and acute sector staff access to local end of life care training and development opportunities. 10. Review funding arrangement for the hospital specialist palliative care team at Epsom and St Helier. 11. Commission hospital discharge planning to include identification of individuals requiring Continuing Healthcare End of Life Care Fast

Track 12. Establish routine collection of person centered outcome measures as part of contractual arrangement with services 13. Provide support to young people, adults and their family/carer who are bereaved 14. Improve identification of individuals presenting with non-malignant diseases such as renal, respiratory and circulatory diseases both in

acute and community settings. 15. Ensure the End of Life Care Co-ordination Hub collect local data such as demographic data, activity, demand, service use, inequalities to

compliment national datasets and provide an evidence base for commissioning services, workforce development and education 16. Develop a coordinated approach to events during Dying Matters week

By April 2020 we will: 17. Ensure that people recorded on Coordinate my Care have a multi-agency care management plan and are proactively case managed to

prevent unnecessary hospital admission. 18. Ensure that an identified named key worker is responsible for overseeing the individual’s end of life journey. 19. Promote the development of a multiagency End of Life Care framework that will support unpaid family carers, support workers and

professional staff working with individuals at the end of their life 20. Promote cultural shift including engagement with social services and other agencies through joint acute and community projects.


1. Introduction

Sutton’s Joint End of Life Care Strategy builds on the previous three year Merton and Sutton End of Life Care Strategy (2011) that took account of the national End of Life Care Strategy: Promoting High Quality Care for All Adults at the End of Life, published by the Department of Health (2008). The vision and objectives of this strategy has been framed around recommendations from the National Palliative and End of Life Care Partnership ambitions framework, which builds on the 2008 Department of Health (DH) Strategy for End of Life Care. This strategy is underpinned by the principle of an active and compassionate approach to end of life that ensures respect and dignity for people, their family and carers. It builds on existing partnership and stakeholder involvement in shaping the delivery of end of life care services in Sutton. Through the refreshed strategy we acknowledge the importance of current collaborative arrangements between statutory, community and voluntary sector agencies and recognises that going forward these arrangements need to be strengthened further. The improvement in service delivery that is expected from this strategy will require ownership and leadership from across the system in partnership with individuals, carers, families and others that are important to them. The strategy will be implemented through the new Sutton Local Transformation Board, Sutton Health and Wellbeing Board and the South West London Sustainability Transformation Plan (STP) Programme Board (see Section 6.1).


2. Background

2.1. Definition of End of Life Care The Sutton’s Joint End of Life Care Strategy will adopt the General Medical Council’s definition for End of Life Care. The General Medical Council (2010) has defined End of Life as described below. The National Institute for Health and Care Excellence adopted the same definition in their Quality Standard for End of Life Care for Adults which was published in 2011. Source: General Medical Council. 2010. Treatment and care towards the end of life: good practice in

decision making. Can be accessed here: http://www.gmc-uk.org/End_of_life.pdf_32486688.pdf

2.2. Scope of this Strategy The scope of Sutton’s Joint End of Life Care Strategy includes:

Adults aged 18 and over who are dying

Adults affected by someone close to them dying

Children who are affected by someone close to them dying

Young people who are transitioning from children to adult services This strategy does not cover:

Neonates, children and young people aged 0 to 17 who are dying

Sutton CCG is committed to delivering recommendations of the National Institute for Health and Care Excellence Guidance (2016) End of life care for infants, children and young people with life limiting conditions: planning and management. The guidance recommends that children and young people with life-limiting conditions should be cared for by a defined multidisciplinary team which include a specialist paediatric palliative team and a named medical specialist who leads on and coordinates the child or young person’s care.

An individual is approaching the end of life when they are likely to die within the next 12 months. This includes people whose death is imminent (expected within a few hours or days) and those with:

advanced, progressive, incurable conditions

general frailty and co-existing conditions that mean they are expected to die within 12 months

existing conditions if they are at risk of dying from a sudden acute crisis in their condition

life-threatening acute conditions caused by sudden catastrophic events

Sutton will be using a broad definition of End of Life Care which describes the process of care through dying, death and bereavement of people who are likely to die in the next year, their families and carers.

http://www.gmc-uk.org/End_of_life.pdf_32486688.pdf


Through a separate workstream, Sutton CCG will work with specialist paediatric teams, social care and other relevant agencies to ensure that the end of life care needs of neonates, children and young people are met through a comprehensive model of palliative care for children and young people.


3. National Policy Context

3.1. Department of Health End of Life Care Strategy: Promoting High Quality Care for All Adults at the End of Life (2008)

The aim of this strategy was to “make a step change in access to high quality care for all people approaching the end of life” (DH 2008:10). The strategy identified 12 key areas, listed below, together with associated actions and recommendations.

Raising the profile

Strategic commissioning

Identifying people approaching the end of life

Care planning

Coordination of care

Rapid access to care

Delivery of high quality services in all locations

Last days of life and care after death

Involving and supporting carers

Education and training and continuing professional development

Measurement and research

Funding The Department of Health’s Strategy highlighted the need to consider the entirety of the patient journey.

3.2. National Institute for Health and Care Excellence (NICE) Quality

Standard for End of Life Care for Adults (2011)

This NICE quality standard defines clinical best practice within this topic area and covers all settings and services in which care is provided by health and social care staff to all adults approaching the end of life. It does not cover condition-specific management and care or the clinical management of specific physical symptoms. The quality standard for end of life care for adults requires that services are commissioned from and coordinated across all relevant agencies, including specialist palliative care provisions as well as the voluntary sector and encompasses the whole end of life care pathway. An integrated approach to provision of services is fundamental to the delivery of high quality care to people approaching the end of life and their families and carers. The standard includes specific, concise quality statements, of which there are 16 relating to the areas listed below.

Identification

Communication and Information

Assessment, Care Planning and Review


Holistic Support

Coordinated Care

Urgent Care

Specialist Palliative Care

Care in the Last Days of Life

Care After Death

Workforce

3.3. Actions for End of Life Care: 2014-16

The National Palliative and End of Life Care Partnership, made up of statutory bodies including NHS England, the Association of Directors of Adult Social Services, charities and groups representing patients and professionals, developed a framework for action. The action plan outline plans to improve the care for people of all ages; people living with and dying from all conditions and those that need additional specialist help and advice. The document is one component of a wider ambition to develop a vision for end of life care beyond 2015. To work in partnership with all those in health and social care and ensure that living and dying well is the focus of end of life care, wherever it occurs. The framework is aimed at health, social care and community leaders. It builds on the Department of Health’s 2008 Strategy for End of Life Care and responds to an increased emphasis on local decision making in the delivery of palliative and end of life care services since the introduction of the Health and Social Care Act 2012

3.4. One Chance to Get It Right (2014)

The Leadership Alliance for the Care of Dying People (LACDP), which was established following an independent review of the Liverpool Care Pathway for the Dying Patient (LCP), published ‘One chance to get it right’ in June 2014. This focuses on care in the last days of life using 5 priorities of care:

Recognise This possibility is recognised and communicated clearly, decisions made and actions are taken in accordance with the person’s needs and wishes, and these are regularly reviewed and decisions revised accordingly;

Communicate Sensitive communication takes place between staff and the dying person, and those identified as important to them;

Involve The dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants;

Support The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible;


Plan & Do An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, co-ordinated and delivered with compassion.

3.5. The Ambitions for Palliative and End of Life Care: A National Framework for Local Action 2015 - 2020 (2015)

The National Palliative and End of Life Care Partnership, made up of statutory bodies including Public Health England, NHS England, the Association of Adult Social Services, charities and groups representing patients and professionals has developed a framework for action in making palliative and end of life care a priority at local level. It is aimed at local health and social care and community leaders. It builds on the Department of Health’s 2008 Strategy for End of Life Care and responds to an increased emphasis on local decision making in the delivery of palliative and end of life care services since the introduction of the Health and Social Care Act 2012.

The national framework for action sets out six ‘ambitions’ – principles for how care for those nearing death should be delivered at local level:

each person is seen as an individual;

each person gets fair access to care;

maximising comfort and wellbeing;

care is coordinated;

all staff are prepared to care;

each community is prepared to help. The framework identifies measures such as personalised care planning and shared electronic records that are needed to realise each of the six ambitions, and calls on Clinical Commissioning Groups, Local Authorities and Health and Wellbeing Boards to designate a lead organisation on palliative and end of life care and to work collaboratively to bring people together to publish local action plans based on population based needs assessments. Ambitions for End of Life Care: www.endoflifecareambitions.org.uk

3.6. The Choice in End of Life Care Programme Board’s What’s important to me (2015)

In February 2015 the Choice in End of Life Care Board published a Review of Choice in End of Life outlining clear recommendations for a national choice offer to be in place by 2020, alongside increasing the coverage of coordinating systems to 100% by 2018 and ensuring that 24/7 out of hospital care is in place by 2019. It also sets out the need for work to continue on outcome and experience measures and suggests that social care at the end of life should be free. It recommends that additional spending is identified to enable this in the next spending review. In addition, the House of Commons Health Committee published their final report with respect to end of life care in March 2015, in which they focus on the need for providers

http://www.endoflifecareambitions.org.uk/


to ensure they have a model in place to deliver the approach set out in ‘One Chance to Get it Right’. They also make a call to the Government to set out plans to enable sustainable hospice care, suggest that social care at the end of life should be free and that there needs to be focus going forward on outcome measures.

3.7. NICE Guidance Care of Dying Adults in the Last Days of Life (2015)

Published in December 2015, the NICE guidance covers the clinical care of adults (18 years and over) who are dying during the last 2 to 3 days of life. It aimed to improve care for people by communicating respectfully and involving them, and the people important to them, in decisions and by maintaining their comfort and dignity. The guideline covers how to manage common symptoms without causing unacceptable side effects and maintain hydration in the last days of life. It is notable that artificial nutrition is not discussed. The NICE guideline includes recommendations on:

recognising when people are entering the last few days of life;

communicating and shared decision-making;

clinically assisted hydration;

medicines for managing pain, breathlessness, nausea and vomiting, anxiety, delirium, agitation, and noisy respiratory secretions;

anticipatory prescribing.

3.8. Every Moment Counts, National Voices (2015)

The narrative for ‘person-centred coordinated care’ produced for NHS England by National Voices in 2015, in conjunction with its partners, sets out critical outcomes and success factors in end of life care, support and treatment, from the perspective of the people who need that care, and their carers, families and those close to them. These include honest discussion and the chance to plan, work to achieve individual goals and quality life and death, and for the people who are important at the centre of my support, physical, emotional, spiritual and practical needs and responsive, timely support day and night.


4. Sutton: The Local Context

4.1. The demography of Sutton

The population of Sutton is approximately 202,220 (2016 resident population estimate) and a registered GP list size of 191,670. This is predicted to rise to 223,000 by 2024. Sutton’s population is also aging with the percentage of over 65 predicted to increase by 19.7% by 2024. Similarly the population aged over 75 is expected to increase by 29.1% by 2024, a higher percentage than for London (26.1%), but less than the 33.9% projected increase for England. The London Borough of Sutton is split into eighteen wards. Within each ward are smaller geographical areas called Lower Super Output Areas (LSOAs). The following figure profiles where our older people were living at the time of the 2011 census by LSOA.

Key Population

0 to 169

170 to 199

200 to 239

240 to 279


280 and over

Some of the key demographic characteristics of Sutton’s population presented in the borough’s Joint Strategic Needs Assessment are described below:

The resident population of Sutton is approximately 202,220 with a registered GP list size of 191,670. This resident population is predicted to rise to 223,000 by 2024.

The Office for National Statistics (ONS) 2014 sub-national population projections estimate that between 2014 and 2024 Sutton’s population is projected to increase by 12.7%. This is similar to London (13.7%) and higher than for England (7.5%). Over this time the population of young people aged 0 to 19 is expected to increase by 16.6% in Sutton, higher than the average for London (14.8%) and England (7.8%). This will have implications for children’s services.

The 2011 census indicated that Sutton had become more ethnically diverse over the last ten years; around 79% of people living in Sutton are white, compared to nationally (85%) and London (60%). 12% of the population was from the Asian or Asian British ethnic groups (compared to 18% in London) in 2011.

In the 2011 Census 58.4% of people living in Sutton reported their religion as Christian compared to 48.4% in London and 59.4% nationally. The next biggest group were those that reported ‘no religion’ (24.6%). After this, the next most commonly specified religions were Hindu (4.2%) and Muslim (4.1%)

In Sutton, cancer remains the biggest single cause of death in under 75 year olds, and the proportion of cancer deaths slightly decreased over the last five years. Over the same time, the proportion of deaths from circulatory disease also reduced, but there was an increase in the number of deaths.

(Source: JSNA 2017)

Sutton’s demography has impact in terms of planning for End of Life Care services.

There is an expectation that there will be an increase in people aged over 65 and 75 by

2024. It is anticipated that the greater number of older people will result in multi

comorbidities and the need for better coordination of resources to support individuals

approaching the last year of their life.

The diversity of population characteristics in Sutton means that commissioners and providers should have a good understanding of different religions, cultures and norms of communities especially in relation to end of life care and death.


4.2. End of Life Care Profile for Sutton

In 2016, 1,527 Sutton residents died. The majority of these deaths occurred in adults

over the age of 75 with the higher proportion above the age of 85 following a period of

chronic illness. Figure 1 profiles the percentage of deaths by age band.

Figure 1

The End of Life Care Monitoring Information for Sutton has highlighted the following points regarding deaths at home trends for Sutton compared to London and England, and at GP Locality Level:

The percentage of deaths at home for Sutton is significantly higher than London and similar to England (See Figure 2).

NHS Sutton’s 25 GP Practices are structured around three localities – Carshalton (8 practices), Sutton and Cheam (10 Practices) and Wallington (7 Practices).There are differences in the proportion of home deaths between the localities with the highest proportion in Sutton and Cheam locality (see Figure 3). The differences between localities with the highest proportion of home deaths in Sutton and Cheam could be explained by the large number of care homes in this part of the borough.

(Source: London Borough of Sutton Public Health Department)

0 to 64 15%

65 to 74 15%

75 to 84 28%

85 and above 42%

Percentage of deaths by age group Source: Sutton residents, 2016


Figure 2

Figure 3

0

5

10

15

20

25

30

35

40

45

50

2010/1

1 Q

4 -

…

2011/1

2 Q

1 -

…

2011/1

2 Q

2 -

…

2011/1

2 Q

3 -

…

2011/1

2 Q

4 -

…

2012/1

3 Q

1 -

…

2012/1

3 Q

2 -

…

2012/1

3 Q

3 -

…

2012/1

3 Q

4 -

…

2013/1

4 Q

1 -

…

2013/1

4 Q

2 -

…

2013/1

4 Q

3 -

…

Q4 2

013/1

4 -

…

2014/1

5 Q

1 -

…

2014/1

5 Q

2 -

…

2014/1

5 Q

3 -

…

2014/1

5 Q

4 -

…

2015/1

6 Q

1 -

…

2015/1

6 Q

2 -

…

2015/1

6 Q

3 -

…

Perc

en

tag

e

Percentage of deaths occurring in usual residence between Q4 2010/11 and Q2 2016/17

Source: Public Health England

NHS Sutton

London

England

0

10

20

30

40

50

60

20

10

/11

Q1

- 20

10

/11

Q4

20

10

/11

Q2

- 20

11

/12

Q1

20

10

/11

Q3

- 20

11

/12

Q2

20

10

/11

Q4

- 20

11

/12

Q3

20

11

/12

Q1

- 20

11

/12

Q4

20

11

/12

Q2

- 20

12

/13

Q1

20

11

/12

Q3

- 20

12

/13

Q2

20

11

/12

Q4

- 20

12

/13

Q3

20

12

/13

Q1

- 20

12

/13

Q4

20

12

/13

Q2

- 20

13

/14

Q1

20

12

/13

Q3

- 20

13

/14

Q2

20

12

/13

Q4

- 20

13

/14

Q3

20

13

/14

Q1

- 20

13

/14

Q4

20

13

/14

Q2

- 20

14

/15

Q1

20

13

/14

Q3

- 20

14

/15

Q2

20

13

/14

Q4

- 20

14

/15

Q3

20

14

/15

Q1

- 20

14

/15

Q4

20

14

/15

Q2

- 20

15

/16

Q1

20

14

/15

Q3

- 20

15

/16

Q2

20

14

/15

Q4

- 20

15

/16

Q3

20

15

/16

Q1

- 20

15

/16

Q4

20

15

/16

Q2

- 20

16

/17

Q1

20

15

/16

Q3

- 20

16

/17

Q2

20

15

/16

Q4

- 20

16

/17

Q3

20

16

/17

Q1

- 20

16

/17

Q4

Pe

rce

nta

ge, 1

2 m

on

th r

olli

ng

ave

rage

s

Percentage of deaths that take place at home, by Locality NB: Home deaths are classified as those in a person's home, plus care home deaths

Source: Primary Care Mortality Database

% Carshalton home deaths % Wallington home deaths % Sutton and Cheam home deaths


4.3. Merton and Sutton End of Life Care Strategy (2011)

We are proud of the new service developments and models of care for end of life care services that have been accomplished since the implementation of the Merton and Sutton End of Life Care Strategy (2011). Detailed update have been provided in Appendix A. Some of the significant achievements are highlighted below.

Coordinate my Care

Sutton CCG remains one of the highest users of Coordinate my Care in London. Coordinate my Care, our chosen Electronic Palliative Care Coordination Systems (EPaCCs) allows healthcare professionals such as London Ambulance Service, NHS 111, GP Out of Hours and Accident and Emergency Services to electronically record people's wishes and ensures their personalised urgent care plan is available 24/7 to all those who care for them.

Preferred place of Death

Deaths at home for Sutton is significantly higher than London. The proportion of deaths that occur in people’s home is considered to be an indicator of the quality of end of life care provision.

New models of care and service developments

Sutton CCG achieved vanguard status for Enhanced Health in Care Homes (see point 4.6).

We commissioned a team of End of Life Care Specialist Nurses for our nursing homes to support the homes with identification and advance care planning and to facilitate end of life care within the home and attend GP multidisciplinary meetings

There is increased identification of people with a learning disability, dementia and non - cancer diagnosis entering the last year of life.

We commissioned a selection of targeted community pharmacies to provide urgent provision of palliative care drugs to support prescribing of anticipatory medicines and dispensing of this Out of Hours.

Hospice @ Home is delivered by St Raphael’s Hospice to support individuals in the last three months of life at home, in care and residential homes to prevent unwanted admissions to hospital and provide support to carers

Acute sector Commissioning for Quality and Innovation in 2011/12 to 2013/14 focused on early identification of patients with cancer and non-malignant conditions at end of life and supporting earlier end of life care discussions.

Workforce development

There is a comprehensive end of life care training and education package for GPs, care home staff, community nurses and other professionals.


Service developments from the previous strategy that we are seeking to further strengthen and prioritise in Sutton’s Joint End of Life Care Strategy include:

Appointment of the organisation that will coordinate end of life services across Sutton

Ongoing commitment to ensure that specialist nurses continue to support care homes with the identification and advance care planning for people in the last days of their life.

Ongoing commitment to implementing the preferred place of death

Extending the use of Coordinate my Care to non-health organisations

Further engagement with voluntary sector organisations, community groups and Faith Leaders regarding access to end of life care services for their communities.

Explore opportunities for using Commissioning for Quality and Innovation to embed best practice and end of life care priorities within the acute sector.

4.4. End of Life Care Services

End of life care is delivered by a range of professionals and services. Care coordination and joint working across the local healthcare economy underpin the close working relationship between providers of end of life care services in Sutton.


Figure 4

Outlined below are details of providers of palliative and end of life care that are commissioned by Sutton CCG. Sutton General Practices Primary Care End of Life Care Enhanced Service This service is commissioned to provide primary care based End of Life Care Enhanced Service which includes identification of people entering the last phase of life; discussion and development of advance care plans and if there is consent, uploading of care plans to Coordinate my Care. The service includes regular multidisciplinary (MDT) meetings to discuss the needs of the individual, coordination of care and completion of After Death Audits. GP Practice clinicians are also required to attend recognised End of Life Care education and training event. Sutton Community Health Services Community Nursing Service This service is commissioned to be delivered 24/7 365 days a year to support individuals, their carers and families in their own homes and care homes. The service

People, family and

their carer (s)

Community

nurse

Consultant

Allied

healthcare

professional

Community

pharmacy

GP

Voluntary

sector

Care home

staff/home

carers

Social

care

Ambulance

Service

Hospice

Specialist

nurse

Hospice

@ Home

Public

health

Caring Support

at Night in the

Home

Bereavement

services


include ongoing holistic assessment of the person’s condition, pain management, symptom control and nursing care for palliative care patients and work in conjunction with providers that offer specialist end of life and palliative care services. The community nurses work closely with specialist palliative care services to ensure a coordinated approach to care delivery. Supportive Home Care Team The Supportive Care Home Team support nursing home staff in the identification of residents entering the last year of life, supporting them to understand and develop advance care plans. This work is now part of the Vanguard programme which is now being rolled out across residential and learning disability homes. Marie Curie The service is commissioned to provide care overnight to individuals in their own home (including a residential setting). This service can be requested by Community Nursing Service or St Raphael’s Hospice. Support is provided by qualified nurses or healthcare assistants depending on the care needs of the individual. St Georges Hospitals University NHS Foundation Trust End of Life Fast Track Discharge Service This service is commissioned at St George’s Hospital jointly with Wandsworth and Merton CCGs to support Sutton residents. The aim is to facilitate timely discharge of Fast Track cases from hospital for people in the last days of life so that they can return home or to their preferred place of care such as care home or hospice if this is their wish. St Raphael’s Hospice Inpatient Hospice Care The service is commissioned to deliver a variety of End of Life Care services which includes 24 hour specialist inpatient beds; outpatients services, home service community palliative care service which is delivered by clinical nurse specialists and a community consultant who provide symptom control and advice to enable people to remain comfortable and independent at home Epsom and St Helier NHS Trust Acute Palliative Care Service The service is commissioned to provide acute palliative care services. The service includes 24/7 access to palliative medical team, seven day 09.00 to 17:00 access to Clinical Nurse Specialist and daily ward rounds.

4.5. Sutton CCG Fully Funded NHS Continuing Healthcare Sutton CCG is responsible for ensuring that people with ongoing care needs are assessed against the National Framework for Fully Funded NHS Continuing Healthcare to establish when Sutton CCG needs to take full responsibility for their care needs. The National Framework for Continuing care (revised November 2012) includes a Fast Track Tool which allows healthcare professionals to refer individuals who are


considered to be entering the final stages of their life with a rapidly deteriorating condition and are eligible to receive a fully funded care package for nursing home placements and domiciliary care services which is commissioned by Sutton CCG on behalf of the NHS. Individuals are cared for in their preferred place of care or in their own home by commissioned domiciliary care agencies, community nursing service with access to St Raphael’s Hospice and Marie Curie Services.

4.6. Sutton Care Home Vanguard

Sutton has been working with care homes since 2014, to improve the residents’ health outcomes and quality of life. This work was formally recognised by NHS England in April 2015 when Vanguard status was awarded. The programme has been given annual funding which will cease in March 2018. Sutton Homes of Care is one of six Enhanced Health in Care Home Vanguards across England where we are working to improve the quality of life, healthcare and health planning for people living in care homes. The combined work of the 6 care home Vanguards resulted in the development of the enhanced health in care homes framework which includes a focus on High Quality End of Life Care through improved integration of services and coordination of care. The programme has enhanced end of life care for residents of care homes, all of whom have the same entitlement to high-quality holistic health and social care as those living in their own homes and those in hospital. Close partnership working between care home staff, the Supportive Home Care Team and primary care has significantly increased the number of residents who have a Coordinate my Care record and advanced care plan. Over 60% of nursing home residents and 30% of residential homes residents have a Coordinate my Care record (Performance data Quarter 4 2016/2017). There is still further progress to be made as hospital data shows that the number of hospital deaths of residents from nursing homes is increasing and from residential homes is decreasing.

4.7. Dementia and End of Life Care We have embarked on a comprehensive training and education programme that is equipping GPs and care home staff to identify people in the early and end stage of dementia. The training programme include information on specific care issues for individuals with end stage dementia, pain assessment in dementia and advance care planning in advanced dementia. In line with NICE Supporting People with Dementia and their Carers (2006), palliative care will be available to people with dementia from the time they are diagnosed until the end of life. We will ensure that dementia care incorporate a palliative care approach from the time of diagnosis until death. The aim is to support the quality of life of people with dementia


and to enable them to die with dignity and in the place of their choosing, while also supporting carers during their bereavement, which may both anticipate and follow death.

4.8. End of Life Care for Young People in Transition to Adult Services

Transition planning must continue to take place even during times of uncertainty and as a young person approaches the last stage of their life. Every effort must be made to ensure that the young person’s death takes place according to their wishes and in their place of choice wherever possible. This may be home, hospital, hospice or other residential setting. The young person may still be attending school or college and their place of education should continue to be involved and kept informed. We are committed to working in collaboration with voluntary sector, health and social care organisations to develop a joint approach to care planning and care provision for young people entering the last stage of their life.


5. People, Public and Provider Perspectives We are committed to hearing the voices of peoples in order to find out what is working well and identify areas for development. We intend to work with providers to ensure feedback from people who are approaching the end of life, carers and family members is captured in a sensitive and meaningful way to support continual improvement in the services.

5.1. National Survey of Bereaved People (Voices) In the 2015 National Survey of Bereaved People (VOICES), the majority of people who reported where they would like to die expressed a preference to die at home (Office of National Statistics 2015) although often this does not become a reality. Therefore, the proportion of deaths that occur in people’s homes is considered to be one indicator of the quality of End of Life Care provision.

The VOICES survey asks respondents if the person who died had expressed a preference for where they would like to die and asked to state where this was (for instance, at home, in a hospice etc.). Out of the 7,561 responses to this question, the majority believed the deceased had wanted to die at home (81%), 8% said they wanted to die in a hospice, 7% in a care home, 3% in hospital and 1% somewhere else.

In Sutton, we have seen an increase in people who die at home or their usual place of residence such as a care home. Recent data shows that the percentage of deaths at home for Sutton is significantly higher than London and in line with England (see Figure 2).

5.2. The Role of Family and Friend Carers

Sutton Carers Centre supports unpaid Carers, adults and children, who live, work or go

to school in the London Borough of Sutton. They provide advice, information and

emotional support, help with benefit forms and/or accessing funds, counselling, breaks

e.g. complementary therapies, support groups, and much more. Much of this work is

funded jointly by London Borough of Sutton and Sutton CCG as part of their

commitment to supporting the wellbeing of Carers and their families at all stages of life.

The important role and contribution of unpaid Carers to end of life care deserve our

respect and recognition. We must ensure that unpaid Carers of all ages continue to

receive advice, information and training, as well as access to breaks and emotional

support, so that they are equipped to care for family members during their last days.

We also want to hear the opinions of unpaid Carers and empower them to influence the

local End of Life Care agenda. We intend to agree a process that will enable Carers to

contribute to planning and provide regular feedback to commissioners and providers on

the quality of End of Life Care services.


5.3. The Role of the Voluntary and Community Sector (VCS)

We are committed to strengthening existing partnership with voluntary sector

organisations, faith and communities groups through the forums facilitated by Sutton

Centre for the Voluntary Sector (SCVS), a membership organisation that supports,

develops and promotes the voluntary sector in the London Borough of Sutton. We

believe that by investing time and resources in building strong relationships, we will be

in a position to jointly deliver maximum benefit to individuals, families and Carers going

through the dying experience and bereavement.

We will achieve this by ensuring that relevant local health and social care organisations

are aware of the end of life care support available from all partners in the statutory,

community and the voluntary sector. We also will listen to stakeholders’ ongoing

opinions about what works well and what needs to be developed to deliver this strategy.

Working with the VCS, we aim not only to develop these organisational relationships but

also increase our reach into the community so that the experiences of many diverse

groups and individuals will help improve end of life care.

In particular, we will work with partners such as Sutton’s Information and Advice

Service, ‘ALPS’ (Advice Link Partnership Sutton), funded by London Borough of Sutton

as well as several independent sources, to provide training to frontline workers who

inform and advise families as well as colleagues. This includes supporting paid workers

as well as volunteers to develop the confidence to have difficult conversations with

individuals and their family members going through the dying experience.

5.4. Feedback from End of Life Care Engagement Events and Workshops

The following strategic partners and stakeholders have contributed to the development

of Sutton’s Joint End of Life Care Strategy:

NHS Sutton Clinical Commissioning Group

Age UK

SLDUC Ltd, The Vocare Group

Epsom and St Helier University Hospitals NHS Trust

London Ambulance Service

London Borough of Sutton

Marie Curie

St Raphael’s Hospice

Sutton Carers’ Centre

Sutton Community Health Services, Community Division of The Royal Marsden NHS Foundation Trust

Sutton Centre for the Voluntary Sector End of Life Care building Sutton Strategy workshop that was held on the 20th of September 2016 involved key strategic partners and a wider group of colleagues from relevant agencies across Sutton. The workshop identified cross cutting themes and requirement that will support better identification, assessment, care coordination, service delivery, Last Days and After Death.


On the 4th of July 2017 and 2nd of August 2017, Sutton End of Life Care Strategy Working Group whose membership include the key strategic partners reviewed Sutton’s position against recommendations in the Ambitions for Palliative and End of Life Care: a national framework for local action 2015 to 2020. Feedback and key messages from the workshops have guided the development of priorities outlined in Section 6.3. Appendix B includes detailed information on the review.


6. Our Priorities for 2017 - 2020

6.1. Leadership and Governance

The End of Life Care Strategy Working Group will be responsible for the operational delivery of Sutton’s Joint End of Life Care Strategy. The Group is chaired by Mary Hopper, Director of Quality at Sutton CCG. The Group will report to the new Sutton Local Transformation Board and Health and Wellbeing Board ( see Figure 5), with links to commissioners and providers’

Organisational Boards and Management Leadership Teams.

Figure 5


6.2. South West London Sustainability and Transformation Plan End of Life Care Priorities

South West London Sustainability and Transformation Plan is a collaboration between all the NHS commissioners and providers in south west London, working with our six local authorities and GP Federations. It sets out how commissioners and providers across the south west London could transform health and care services, so that local people receive the high quality care they rightfully expect, now and in years to come. The End of Life Care priorities of the South West London Sustainability and Transformation Plan include:

Delivering the right care in the right place Helping people nearing the end of their life to die where they choose

Getting end of life care right Proactively identify patients who should be receiving palliative care to

ensure that all people at the end of their life have high quality and compassionate care.

Train staff across the health system to help people at the end of their life, their families and carers, plan and proactively manage their care.

Promote Coordinate my Care across south west London to ensure that important information about people at the end of their life and their preferences for the care they wish to receive is recorded and known.

Roll out the implementation of the national cancer vanguard to improve access to high quality palliative and round the clock end of life care

Evidence across south west London indicate that health and social care services are not meeting the needs or preferences of people at the end of their lives in south west London.

(Source: South West London Five Year Forward Plan, October 2016)

6.3. Sutton’s End of Life Care Priorities We have structured our priorities for 2017 to 2020 around statements that describe the six ambitions in the Ambitions for Palliative and End of Life Care: a national framework or local action 2015 to 2020 from the point of view of a person nearing the end of life and local themes that people, commissioners and providers think we need to focus on in the next three years to bring the ambitions to reality.


Ambition One: Each person is seen as an individual I, and the people important to me, have opportunities to have an honest, informed and timely conversations and to know that I might die soon. I am asked what matters most to me. Those who care for me know that and work with me to do what’s possible.

Sutton’s Priority Key Performance Indicator Theme

Improve identification of individuals presenting with non-malignant diseases such as renal, respiratory and circulatory diseases both in acute and community settings.

Commission hospital discharge planning to include identification of individuals requiring Continuing Healthcare End of Life Care Fast Track

Extend current Supportive Care Home service to include council funded sheltered accommodation

Promote choice and personalised care for those dying and their families in acute and community settings through the offer of personal health budgets

Ensure good understanding of different religions, cultures and norms of communities especially in relation to end of life care and death.

Increase identification of individuals entering the last stage of their life

Increase the use of Advance Care Plans

Increase identification of individuals presenting with non-malignant diseases

Increase the number of individuals identified through Continuing Healthcare End of Life Care Fast Track

Identification

Assessment

Ambition Two: Each person gets fair access to care I live in a society where I get good end of life care regardless of who I am, where I live or the circumstances of my life


Promote engagement with faith groups, cultural communities as well as diverse organisations that support people with life shortening illnesses and those managing the difficulties of older people

Increase in patients registered on GPs palliative care register

Reduction in deaths in hospital for people at the end of life whose preferred place of care

Positive Dying Experience

Community Engagement


Ensure that patients recorded on Coordinate my Care have a multi-agency care management plan and are proactively case managed to prevent unnecessary hospital admission

Ensure that an identified named key worker is responsible for overseeing the individual’s end of life journey

is in the community

Increase the number of people able to die in their usual place of residences through the delivery of advance care planning

Care Coordination

Ambition Three: Maximising comfort and wellbeing My care is regularly reviewed and every effort is made for me to have the support, care and treatment that might be needed to help me to be as comfortable and as free from distress as possible


Review access to end of life care pain control related to different care settings

Ensure that domiciliary and social care providers are trained to recognise and acknowledge the physical, psychological, emotional, social or spiritual distress of an individual at the end of life to facilitate timely access to appropriate End of Life Care services

Increase in satisfaction of bereaved families


Ambition Four: Care is coordinated I get the right help at the right time from the right people. I have a team around me who know my needs and my plans and work together to help me achieve them. I can always reach someone who will listen and respond at any time of the day or nigh


Commission a local health and social care 24/7 End of Life Care Hub to support information/advice, assessment, care coordination, information exchange, care planning, training and care delivery.

Ensure the End of Life Care Co-ordination Hub collect local data such as demographic data, activity,

Reduction in emergency admissions to hospital for people who are approaching the end of life their life as a result of better management of care packages

Reduction in number of hospital bed days of patients wishing to die at home

Care Coordination



demand, service use, inequalities to compliment national datasets and provide an evidence base for commissioning services, workforce development and education

Develop local information packs for End of Life Care services and available support

Develop hand held care plans for patients to keep at home or take to GP and hospital appointments

Review use of Coordinate My Care across acute and community health and social care settings and its ability to achieve the shared records by scoping other electronic integrated records and links across Sutton

Develop an information sharing protocol that will enable and support Sutton multiagency approach for End of Life Care, care planning and shared records

Reduction in emergency admissions of people who are approaching the end of their lives from Care Homes

Ambition Five: All staff are prepared to care Wherever I am, health and care staff bring empathy, skills and expertise and give me competent, confident and compassionate care.


Review care home staff’s access to local end of life care training and development opportunities.

Review acute sector workforce access to local end of life care training and development opportunities.

Establish a systematic approach to collecting service user feedback including patient and carer satisfaction in a meaning way in acute and community settings

Increase number of care home staff, unpaid carers, community and voluntary sectors staff accessing training in end of life care.

Workforce development


Establish routine collection of person centred outcome measures as part of contractual arrangement with services

Support the development of a multiagency End of Life Care framework that will support unpaid family carers, support workers and professional staff working with individuals at the end of their life

Ensure that the End of Life Care Co-ordination Hub develops a model of care that reassures individuals and their families that a peaceful death can be achieved in their own environment

Review funding arrangement for the hospital specialist palliative care team at Epsom and St Helier.

Ambition Six: Each community is prepared to help I live in a community where everybody recognises that we all have a role to play in supporting each other in times of crisis and loss. People are ready, willing and confident to have conversations about living and dying well and to support each other in emotional and practical ways.


Promote cultural shift through the joint delivery of secondary care, social care, faith groups, carers support and voluntary sector organisations

Develop a coordinated approach to events during Dying Matters week

Increase in satisfaction of bereaved families Positive Dying Experience


6.4. High Level Implementation Plan

This section describes the High Level Implementation Plan and deadline for priorities in

the End of Life Care Strategy. In order to deliver this strategy and realise the benefits for

individuals, their family and carers, a more detailed implementation plan will be

developed by the Sutton End of Life Care Strategy Working Group. The plan will work

to ensure best use of the existing resources, building on what has been done to date

and where necessary develop specific project mandate(s) to take collaborative

improvement work forward.

Organisations that are represented on the Sutton End of Life Care Strategy Working

Group will be asked to describe how they will contribute to the implementation of the

strategic priorities.

By April 2018 we will:

1. Commission a local health and social care 24/7 End of Life Care Hub to support

information/advice, assessment, care coordination, information exchange, care planning and care delivery.

2. Promote choice and personalised care for those dying and their families in acute and community settings through the offer of personal health budgets.

3. Review use of Coordinate my Care across acute and community health and social care settings and its ability to achieve the shared records by scoping other electronic integrated records and links across Sutton.

4. Ensure good understanding of different religions, cultures and norms of communities especially in relation to end of life care and death.

By April 2019 we will:

5. Develop local information packs for end of life care services and available support.

6. Promote engagement with faith groups, cultural communities as well as diverse

organisations that support people with life shortening illnesses and those managing the difficulties of older people.

7. Promote spirituality in end of life care to raise awareness and ensure people’s

beliefs and wishes are respected and supported.

8. Develop an information sharing protocol that will enable and support Sutton

multiagency approach to end of life care, care planning and shared records.

9. Review care homes and acute sector staff access to local end of life care training and development opportunities.


10. Review funding arrangement for the hospital specialist palliative care team at Epsom and St Helier.

11. Commission hospital discharge planning to include identification of individuals

requiring Continuing Healthcare End of Life Care Fast Track.

12. Establish routine collection of person centered outcome measures as part of

contractual arrangement with services.

13. Provide support to young people, adults and their family/carer who are bereaved.

14. Improve identification of individuals presenting with non-malignant diseases such

as renal, respiratory and circulatory diseases both in acute and community settings.

15. Ensure the End of Life Care Co-ordination Hub collect local data such as

demographic data, activity, demand, service use, inequalities to compliment national datasets and provide an evidence base for commissioning services, workforce development and education.

16. Develop a coordinated approach to events during Dying Matters week.

By April 2020 we will

17. Ensure that people recorded on Coordinate my Care have a multi-agency care management plan and are proactively case managed to prevent unnecessary hospital admission.

18. Ensure that an identified named key worker is responsible for overseeing the individual’s end of life journey.

19. Promote the development of a multiagency End of Life Care framework that will

support unpaid family carers, support workers and professional staff working with individuals at the end of their life.

20. Promote cultural shift including engagement with social services and other

agencies through joint acute and community projects.


Appendix A: Review of Priorities in 2011 and Progress to

Date This section provides an overview of the commitments set out in the 2011 Merton and Sutton End of Life Care Strategy and outlines the progress that has been made since its publication.

1. Raising the Profile

Commitments in the 2011 Strategy:

To promote the profile of end of life care through the local Health and Wellbeing Boards in Merton and Sutton, and to work with partner organisations including social care and the third sector.

To continue to work with local communities to raise awareness, particularly faith and other spiritual groups and organisations.

To promote choice in end of life care services so that people are better informed about what services are available to them.

Progress since 2011:

People are increasingly offered the opportunity to have a Coordinate my Care record which provides an opportunity to discuss and document choice.

Coordinate my Care monthly data overview for NHS Sutton CCG data for June 2017 reported that there are 1445 peoples with a recorded date of death on Coordinate my Care. Of these, 1194 had a place of death recorded, of whom 918 had explicitly expressed a preferred place of death (some had no preference, or were too unwell for the discussion). Overall 73% of peoples have died in their preferred place where peoples have a Coordinate my Care record, 20% die in hospital. However, nationally, 47% die in hospital.

Invitations to events about end of life care have been extended to Faith Leaders in order to share information about access to end of life care services for their communities.

The hospice, community services and palliative care teams in the acute sector have actively engaged with Dying Matters Week in May each year to inform the public about their choices for end of life care and available services/resources.

The Supportive Home Care Team have worked with care home staff and GPs to identify residents who are entering last year of their life. Care plans are recorded and shared on Coordinate my Care.

2. Strategic Commissioning


The Sutton and Merton End of Life Care Network, a strategic stakeholder group, will continue to ensure plans are implemented and links are made to relevant workstreams.


To utilise the Marie Curie ‘Delivering Choice’ methodology/systems approach to ascertain end of life care gaps and unmet needs.


We will continued to support the end of life care network across Merton and Sutton bringing together strategic partners to develop improvements in end of life care services.

The strategic commissioning arrangement for end of life care has extended to the South West London Sustainability Transformation Plan platform.

3. Identifying People Approaching the End of Life

Commitment in the 2011 strategy:

To continue to implement, embed and sustain symptom assessment tools (i.e. Gold Standards Framework prognostic indicators) and knowledge and skills of symptom management with all professionals working with an individual in the last year of life in all clinical settings.

To consider the implications of ‘The Route to Success in End of Life Care: Achieving Quality for People with Learning Disabilities’ published by the identifying how well prepared providers are to manage the end of life care needs of people with learning disabilities, appropriate pathways and policies, and ensuring staff are aware of the guide.


Increased the identification of patients with non-cancer diagnosis for those accessing advance care planning and Coordinate my Care records.

Symptom Assessment Tools training as part of the Sutton Community Health Team work with care homes

Learning Disability Pilot as part of Vanguard work, yet to be validated.

4. Care Planning

Commitment in the 2011 Strategy:

To implement, embed and sustain Advance Care Planning across community and acute settings


Commissioned a Local Enhanced Service for end of life care which is delivered by general practice to increase advance care planning and to facilitate people’s preferences for care at the end of their life.

Commissioned a team of End of Life Care Specialist Nurses for our nursing homes to support the homes with identification and advance care planning and to facilitate end of life care within the home and attend GP multidisciplinary meetings

Development of agreed last days of life care plan for use in care homes, own homes in collaboration with the St Raphael’s Hospice.

5. Coordination of Care


To continue to encourage and support staff to offer Coordinate my Care records to patients in all settings


To look to develop a provider to coordinate end of life care services across Sutton and Merton


Implemented a pilot an Electronic Palliative Care Coordination System currently Coordinate my Care.

GP Practices, ambulance service, hospices and Epsom and St Helier University Hospitals NHS Trust use coordinate my care to upload an individual’s wishes and preferences. Sutton CCG remains one of the highest users of Coordinate my Care in London. There are future plans to extend to other end of life care providers.

A Community Consultant in Palliative care has been appointed at St Raphael’s Hospice.

Implemented Fast Track process within the acute trust to facilitate discharge in a timely manner for peoples nearing the final stages of life.

Equipment service has been commissioned to respond urgently if needed

Commissioned a selection of targeted community pharmacies to provide urgent provision of palliative care drugs to support prescribing of anticipatory medicines and dispensing of this Out of Hours.

Appointment of the organisation that will coordinate end of life services across Sutton is outstanding. This remains a priority.

6. Rapid Access to Care

Commitments in the Rapid Access to Care:

To continue implementing preferred place of care, which will lead to reduced length of hospital stay, through extension of the Coordinate my Care and Hospice @ Home schemes to patients with a non-malignant diagnosis


Hospice @ Home is delivered by St Raphael’s Hospice to support individuals in the last three months of life at home in care and /or residential homes to prevent unwanted admissions to hospital and provide support to carers.

Sutton CCG’s Coordinate my Care data for June 2017, included recorded diagnoses for Cancer 43.6% and for Non-Cancer 56.4%

7. Delivery of high quality in all locations

Commitment in the 2011 strategy:

To ensure the remaining 30% of care (nursing) homes that have yet to undertake the Gold Standard Framework in Care (nursing) homes programme achieve this, and to sustain those care (nursing) homes that have completed the programme to maintain it.

To extend and implement the Gold Standard Framework and other best practice in primary care by seeking to employ a Macmillan GP and introducing a Local Enhanced Service.



Priority moved away from Gold Standard Framework with the development of the Supportive Care Home Team.

The Supportive Care Home Team provide bespoke End of Life Care training to care homes. The training is based on National Priorities of Care and underpinned by clinical role modelling of good End of Life Care practice.

Macmillan GP has been appointed to deliver Macmillan’s priority regarding cancer prevention and screening uptake. The Macmillan GP service does not directly support end of life care.

8. Dementia Care


To promote the development of expertise in end of life dementia care


In 2012, an End of Life Care and End Stage Dementia Project delivered the following: A training package for GPs which included identification of the end stage of

dementia, information on specific care issues for individuals with end stage dementia , pain assessment in dementia and advance care planning in advanced dementia

A pilot training package for care homes which consisted of general

dementia training including identification of advanced dementia, pain assessment in dementia and advance care planning

9. Last Days of Life and Care After Death


To ensure that widespread use of the Liverpool Care Pathway continues through a focus on a multi-disciplinary team meetings and working.


Since the cessation of the Liverpool Care Pathway, the acute sector follows the principles of One Chance to Get it Right (DH, 2015) in order to provide good quality care in the last hours and days of life.

Development of individualised care plan for people in the dying phase has been adapted from St Raphael’s Hospice documentation for use in care homes and community nursing.

10. Involving and Supporting Carers


To seek feedback and undertake bereavement research, using the ‘Voices’ questionnaire

To review the bereavement support to look at both face-to-face support and telephone advice


Bereavement support is available from the Community Mental Health Team


11. Education and Training and Continuing Professional Development


To focus training on communication skills, symptoms control, psychological care and /or bereavement care, and spiritual care, ensuring this is in place for all professionals working with patients and clients in the last year of life.

To continue to identify best practice locally and also implement any new national best practice, as it is published.


St Raphael’s RCN accredited care home training programme was delivered from 2011 to 2014 to support improved end of life care knowledge and skills. The training was well attended by all grades of staff and feedback from participants was very positive.

There is informal end of life care support from specialist end of life nursing teams, GPs and Sutton Care Home Provider Network Forum

Formal training in end of life care for MDT staff groups is available for staff in the acute sector.

Secured funding from Health Education South London (HESL) to deliver training programme for syringe pump management in nursing homes. The training was supported by the Vanguard programme and delivered jointly by the Supportive Care Home Team and St Raphael’s Hospice, This programme delivered training to 58 nurses from Sutton nursing homes and established a 24/7 pathway of support for the use of syringe pumps.

Education and Training is a requirement of the local enhanced service contract for end of life care.

12. Measurement and research


To undertake research into symptom assessment and control, exploring the use of validated tools, such as the Palliative Care Outcomes score and/or another tool called SPARC

To progress the development of a pain diary, and, to ensure that psychological and spiritual dimensions of pain are incorporated into pain assessment


Sutton CCG remains committed to learning from effective models of care and good practice in symptom assessment using validating tools and methodologies

Care homes are taught about pain assessment tools for people with dementia. There is a pain assessment tool (DISDAT) for people with learning disability.

13. Funding


To utilise the Commissioning Support for London economic modelling tool (or similar) when ready, in order to understand the size of the acute end of life care population and associated costs



A review that was undertaken by a Darzi Fellow on end of life care in Sutton reported that the per-patient cost of hospital, emergency and unplanned care is £2,324 to £2,467 lower for Co-ordinate my Care patients. The net impact is that average treatment costs for Co-ordinate my Care patients are £1,350 to £2,102 lower than for non-Coordinate my Care patients in the 6 months prior to death. The report did not look at the increasing costs of social care or the impact on primary care and community services as these are block contracts.

14. Commissioning for Quality and Innovation


To use the acute Commissioning for Quality and Innovation scheme as a mechanism to improve care for patients approaching the end of life in hospitals by increasing the number of patients being placed on end of life registers and having the opportunity to undergo discussions regarding preferred priorities for care.

To use the community services Commissioning for Quality and Innovation scheme to improve end of life for people with an increase in the number of people approaching the end of life having an advanced care plan and dying in their preferred place.


Sutton CCG has achieved vanguard status for enhanced health in care homes. This includes facilitation of high standard of end of life care.

Acute sector Commissioning for Quality and Innovation in 2011/12 to 2013/14 focused on early identification of patients with cancer and non-malignant conditions at end of life and supporting earlier end of life care discussions.

15. Value for Money Scheme


To develop a scheme to assess and ensure end of life care services are value for money, which will aim to improve quality whilst reducing the reliance on acute hospital beds.


As described above, in 2013, a Darzi Fellow review indicated that the per-patient cost of hospital, emergency and unplanned care is £2,324 - £2,467 lower for Co-ordinate my Care patients. The net impact is that average treatment costs for Co-ordinate my Care patients are £1,350 to £2,102 lower than for non-Coordinate my Care patients in the 6 months prior to death.

Sutton will seek to test out different models of care in the coming years to support reducing reliance on acute hospital beds.


Appendix B: Review of Sutton’s position against the

Ambitions for Palliative and End of Life Care: a national

framework for local action 2015 – 2020 Ambition One: Each person is seen as an individual I, and the people important to me, have opportunities to have an honest, informed and timely conversations and to know that I might die soon. I am asked what matters most to me. Those who care for me know that and work with me to do what’s possible.

National Picture:

Having our personal needs and wishes ignored or overridden is a deeply rooted fear for those who are dying, their families, and the many people who are carers, as well as those who have been bereaved.

We know that much about recognising dying and impending death is uncertain and challenging. However, timely identification and honesty where there is uncertainty is key to the quality of care – all else follows.

We know that despite the difficulty that can be associated with talking about death, people want repeated opportunities to consider whether to engage in such honest conversations about their future.

We know that people want to be involved in their care, and should be given all the information, advice and support they need to make decisions about it.

We know that with effort, collaboration and system leadership health and social care can be designed around the wishes of the person approaching death.

We know that asking, recording and working to support choices requires those who lead organisations and the care professionals who work in them to be innovative in how to enable choices to be met, particularly within resource constraint.

Sutton’s response:

There are established organisational approaches to supporting individuals during the last year of their life in both acute and community settings.

GP Practices are commissioned to identify patients and offer advance care plan in the last year of their life. Individuals information is uploaded into Coordinate my Care with consent from the individual and/or their family.

There are local arrangements for identifying and supporting care home residents who are entering the last year of life.

There are arrangements in place to support care home staff with training and awareness of end of life care processes.

St Raphael’s Hospice and nursing home teams have shared end of life care plan.

Sutton care homes receive support from the Royal Marsden Supportive Care Home Team on end of life care plans for their residents.


Training for Fast Track applications in both the acute and community setting for healthcare professionals has improved the effectiveness of the assessments, timely informed decision making and commissioning of required care.

Case management is provided by community nursing for those individuals cared for at home.

Gaps:

There is no agreed multi-agency approach for care planning and shared records

Staff, in acute and community settings, do not necessary have access to available local training because of capacity and time constraint issues

Information governance can be a barrier. Voluntary sector organisations do not always have access to information on the people they are caring for.

Ambition Two: Each person gets fair access to care I live in a society where I get good end of life care regardless of who I am, where I live or the circumstances of my life

National Picture:

People from black and ethnic and minority (BAME) communities and deprived areas report a poorer quality of end of life care, similarly those who are living with non-malignant illnesses, people living in more deprived areas, the homeless or imprisoned and those who are more vulnerable.

The quality of end of life care is poorer and harder to access for people who live in very rural or other isolated areas.

There remain unacceptable inequities and inequalities in access to palliative and end of life care particularly for those with learning disabilities, dementia and non-malignant long term conditions.

There are unacceptable variations in aspects of palliative and end of life care such as access to pain control, related to different care settings


The ethnic profile in Sutton is projected to change with the borough becoming increasingly more diverse. The increase in diversity is likely to be seen in the wards of Wandle Valley, Sutton Central, Belmont and Carshalton South therefore services will be tailored to meet the culturally needs diversity of the population.

Sutton wards in the most deprived quintile currently have a lower volume of deaths at home reported therefore commissioned services need to target these wards regarding service provision

The Royal Marsden NHS Foundation Trust Supportive Care Home Service currently support nursing care homes staff in the identification of residents with learning disability and dementia entering the last year of life and supporting them to understand and develop advance care plans. They also provide training for the staff. This work is now part of the Vanguard programme which


is now being rolled out across residential and learning disability homes. There are 20 Nursing Homes, 11 residential homes and 50 learning disability homes in Sutton.

Under the Memorandum of Agreement between Sutton Council and Sutton CCG, the Sutton Public Health Department provides regular monitoring information on end of life care.

Jigsaw4u provides (currently funded by Macmillan Cancer Support) counselling to children and families with life limiting conditions. Funding ends on 31 March 2018

Gaps:

There is no local agreement on the current reach of palliative and of life care services across different diseases, social and ethnic groups.

There is no arrangement in place for early identification and raising awareness of social care funded carers who work with individuals with life limiting conditions.

Person centered outcome measures are not used uniformly across Sutton.

There is lack of End of Life Care data such as demography, activity, demand, service use and inequalities to compliment national datasets, provide evidence base for commissioning services, workforce development and education.

Service user engagement is not embedded in local arrangements for end of life care.

No clear engagement plan with faith groups, cultural communities as well as diverse organisations that support people with life shortening illnesses and those managing the difficulties of older people

Lack of awareness of what support St Raphael’s Hospice can offer to people from multicultural communities.

Ambition Three: Maximising comfort and wellbeing My care is regularly reviewed and every effort is made for me to have the support, care and treatment that might be needed to help me to be as comfortable and as free from distress as possible

National Picture:

Many people approaching death are fearful of being in pain or distress. Dying and death can be powerful sources of emotional turmoil, social isolation and spiritual or existential distress.

We know that distress from pain and symptoms can be relieved with expert palliative care and that inadequate and misguided clinical interventions are features of patients’ and their families’ poor experiences.

We know that access to good and early palliative care can improve outcomes for life expectancy as well as improve the quality of life.

A comfortable death can help those who are bereaved to adjust to their loss in


ways that secure their future health and wellbeing.


There is recognised approach to anticipatory prescribing for symptoms that may present at the end of life.

Sutton CCG commissions specialist palliative care pharmacies to dispense end of life medications during and out of hours.

Through the Sutton vanguard programme, qualified nurses working within the care home setting have received training on set up of syringe drivers for management of pain control.

Gaps:

Lack of support to raise awareness and recognition by domiciliary and social

care providers regarding the physical, psychological, emotional, social or

spiritual distress of individuals entering the end of stages of their life.

There is need for education regarding frequency of use and prescribing for symptoms that may present at the end of life in both acute and community services.

The End of Life Care workforce needs to have access to all locally supported symptom management guidelines.

There needs to be clarity on how to access rehabilitation services for people approaching the end of life.

Ambition Four: Care is coordinated I get the right help at the right time from the right people. I have a team around me who know my needs and my plans and work together to help me achieve them. I can always reach someone who will listen and respond at any time of the day or nigh

National Picture:

Fragmented and disjointed care is a source of frustration and anxiety for the dying person and for all those important to them

Carers often testify to the difficulties of multiple professionals and organisations working with little awareness of each other. This lack of coordination causes significant distress.

Poor communication and a failure to share information about the dying person is a recurrent failing when care is not good enough.

We have to find a way to provide the social care that people need regardless of financial circumstances.

We know that 24/7 expert palliative and end of life care services need to be available and that their availability around the clock is key to building a system of high quality care.

We know that access and trust in the services available in the community are crucial to sustaining care outside of hospitals – most people’s preferred


environment


There is 24 hour access to specialist symptom control advice and support for those nearing end of life through Marie Curie, St Raphael’s Hospice and the Royal Marsden Sutton Community Health Service.

The hospital specialist palliative care team at Epsom and St Helier provides 24/7 service to inpatients.

Befriending service is available through the hospice

Gaps:

There is a lack of care coordination across Sutton with currently no single point of access and/or hub for information and advice; assessment, care coordination, information exchange, care planning and service delivery.

Fragmented services also means that data and/or information is held in silos, leading to poor oversight and understanding of services, workforce development and educational requirements.

Specialist palliative care team in hospital are not directly funded for 2017/18 as Sutton CCG has Payment by Result contract (previously indirectly funded through block contract agreement).

Providers have reported that communication is a big issue. Planning, communication and sharing of information should be a key priority.

Information is not routinely shared with the voluntary sector

Do Not Attempt Resuscitation (DNAR) status does not follow when patients are discharged home.

Lack of funding for End of Life Care training for volunteers and/or staff

Integration with social care requires improvement.

There is no locally agreed information pack on end of life care for individuals, their family and carers.

Everyone matters – we need to recognise cultural differences

Ambition Five: All staff are prepared to care Wherever I am, health and care staff bring empathy, skills and expertise and give me competent, confident and compassionate care.

National Picture:

Caring for the dying, looking after the bodies of the dead and supporting people facing loss and grief, before and after death, is difficult and distressing. It challenges the resilience and fortitude of those working in end of life care.

Most health and care staff look after people who are nearing death, so if care is to improve they must be trained in those aspects of end of life care that are appropriate to their role


Too often the employers of health and care professionals have not acted systematically to help their staff avoid the debilitating effects of burn out, avoidance or helplessness resulting from lack of education, training and support.

Staff can only provide compassionate care when they are cared for themselves and must be supported to sustain their compassion so that they can remain resilient, and use their empathy and apply their professional values every time

We know that good pain and symptom management benefits both the dying and those who spend time with them.

If we are to make deaths at home more achievable, we know that we have to do more to ensure sufficient support for those paid carers who may be vital to sustaining the viability of care at home


There is a strong and clearly defined clinical leadership for palliative and end of life care across agencies involved in the delivery of End of Life Care. The new strategy will explore future opportunities for joint working and accountability across agencies.

Gaps:

Lack of coordination of end of life care service delivery and education across Sutton.

No coordinated end of life care education framework in place for all Sutton.

We need individual held care plan that is flexible to meet the needs of the population groups.

No single point of referral or key worker approach to the delivery of end of life

care in Sutton.

Ambition Six: Each community is prepared to help I live in a community where everybody recognises that we all have a role to play in supporting each other in times of crisis and loss. People are ready, willing and confident to have conversations about living and dying well and to support each other in emotional and practical ways.

National Picture:

Dying, death and bereavement are not primarily health and social care events; they affect every aspect of people’s lives and experience.

Dying and bereaved people often feel disconnected or isolated from their communities and networks of support.

Despite some real progress and the growing reach and impact of the Dying Matters Coalition there remains a continued need to address and dissolve the taboo that many people feel when it comes to talking about dying, death and bereavement and facing up to their own mortality and that of the people important to them

There are ways to foster and support compassionate communities and to put end


of life care at the heart of community health and wellbeing.

Supporting and working with communities, to develop their capacity to play a significant role in supporting individuals and those important to them, at the end of life and through bereavement, can help achieve the best outcomes for those with pressing needs

Volunteers are a significant resource in creating good end of life care and must be valued more highly and used more effectively


There is annual promotion of Dying Matters week in hospital and hospice

GPs via key performance indicators are encouraged to identify and offer advanced care plans

What to expect booklets are available from GP Practice, palliative care/specialist palliative care teams and commissioners.

There is evidence of multiagency working and good engagement among acute and community service providers.

St Raphael Hospice provides advice and supports the voluntary sector including carers

Gaps:

Lack of Sutton wide collaborative working and approach to the Dying Matters campaign week

Community engagement is not prioritised


Acknowledgements

We would like to thanks colleagues who have helped to develop this strategy and also

professionals, volunteers and groups who are committed to delivering quality end of life

care for the people of Sutton.

Mary Hopper Director of Quality, NHS Sutton Clinical Commissioning Group

Alison Navarro Chief Executive, Sutton Centre for the Voluntary Sector (SCVS)

Lynne Brown Team Manager Hospital Pathway /START, London Borough of Sutton

Clare Ridsdill- Smith Head of Public Health Integration, London Borough of Sutton

Anna-Marie Stevens Nurse Consultant, The Royal Marsden NHS Foundation Trust

Gail Linehan Director of Care Services and Strategy Development, St Raphael’s Hospice

Caroline Betts Clinical Services Manager, St Raphael's Hospice

Caroline Pollington Care Home Vanguard Nurse Clinical Lead, NHS Sutton Clinical Commissioning Group

Christine Harger Quality Assurance Manager (Care Homes and Older People), NHS Sutton Clinical Commissioning Group

Clare O'Sullivan Clinical Lead for End of Life Care, NHS Sutton Clinical Commissioning Group

Debbie Lindon-Taylor Clinical Nurse Director, The Royal Marsden NHS Foundation Trust

Jane Begley Assistant Clinical Support Manager, 111 provider, SLDUC Ltd, The Vocare Group

Jane Pettifer Head of Continuing Care, NHS Sutton Clinical Commissioning Group

Lynne MacInnes Clinical Nurse Manager, SWL Nursing Service, Marie Curie


Rachael Chapman Divisional Business and Service Development Manager, Marie Curie

Sally Middleton Specialty Doctor in Palliative Medicine, SAS Tutor, Epsom and St Helier University Hospitals NHS Trust

Victoria Wright Operations Director, Age Uk

Rachael MacLeod Chief Executive, Sutton Carers Centre (Carers Trust Network Partner)

Alison Navarro Chief Executive, Sutton Centre for the Voluntary Sector (SCVS)

Corrine Campion Clinical Nurse Specialist, The Royal Marsden NHS Foundation Trust

Lucy McCulloch Evaluation Lead Care Home Vanguard, NHS Sutton Clinical Commissioning Group


References and Other Useful Sources of Information

Documents which have been referenced /referred to in this strategy document

General Medical Council (GMC) (2010). Treatment and care towards the end of life: good practice in decision making. London: GMC. Available at: www.gmc-uk.org/static/documents/content/Treatment_and_care_ towards_the_end_of_life_-_English_0914.pdf (accessed on 6 August 2017).

Department of Health (2008). End of Life Care Strategy: Promoting high quality care for all adults at the end of life. London: HMSO. Available at: https://www.gov.uk/ government/publications/end-of-life-care-strategy-promoting-high-quality-carefor-adults-at-the-end-of-their-life (accessed on 6 August 2017).

NICE National Institute for Health and Care Excellence (NICE) (2011 modified 2013). Quality standard for end of life care for adults. NICE Quality Standard 13. London: NICE. Available at: www.nice.org.uk/guidance/qs13 (accessed on 6 August 2017).

NHS England (2014). Actions for End of Life Care: 2014-16. London: NHS England. Available at: www.england.nhs.uk/wp-content/uploads/2014/11/actions-eolc.pdf (accessed on 6 August 2017).

Department of Health (2015). One Chance to Get it Right: One Year On Report: An overview of progress on commitments made in Once Chance to Get it Right: the system wide response to the Independent Review of the Liverpool Care Pathway. London: Department of Health 2015. Available at: www.gov.uk/government/uploads/system/uploads/attachment_data/file/450391/One_chance_-_one_year_on_acc.pdf (accessed on 6 August 2017)

The Choice in End of Life Care Programme Board (2015). What’s important to me. A Review of Choice in End of Life Care. The Choice in End of Life Care Programme Board: London. Available at: www.gov.uk/government/publications/choice-in-end-oflife-care (accessed on 6 August 2017)

The National Palliative and End of Life Care Partnership. 2015. Ambitions for Palliative and End of Life Care: A national framework for local action 2015-2020.Available at: http://endoflifecareambitions.org.uk/wp-content/uploads/2015/09/Ambitions-for-Palliative-and-End-of-Life-Care.pdf (accessed on 6 August 2017)

Office of National Statistics (2015). National Survey of Bereaved People (VOICES), 2014. London: ONS. Available at: www.ons.gov.uk/ons/dcp171778_409870.pdf (accessed on 6 August 2017)

The Sutton Joint Strategic Needs Assessment (JSNA). Available at: https://data.sutton.gov.uk/sutton_jsna/ (accessed on 6 August 2017) National Institute for Health and Care Excellence Guidance (2016) End of life care for infants, children and young people with life limiting conditions: planning and management. London: NICE. Available at: https://www.nice.org.uk/guidance/ng61/evidence/appendix-l-pdf-2728081265 (accessed on 28 August 2017)

http://www.gmc-uk.org/static/documents/content/Treatment_and_care_%20towards_the_end_of_life_-_English_0914.pdf



http://www.nice.org.uk/guidance/qs13

http://www.england.nhs.uk/wp-content/uploads/2014/11/actions-eolc.pdf

http://www.gov.uk/government/publications/choice-in-end-oflife-care

http://www.gov.uk/government/publications/choice-in-end-oflife-care

http://endoflifecareambitions.org.uk/wp-content/uploads/2015/09/Ambitions-for-Palliative-and-End-of-Life-Care.pdf

http://endoflifecareambitions.org.uk/wp-content/uploads/2015/09/Ambitions-for-Palliative-and-End-of-Life-Care.pdf

http://www.ons.gov.uk/ons/dcp171778_409870.pdf

https://data.sutton.gov.uk/sutton_jsna/

https://www.nice.org.uk/guidance/ng61/evidence/appendix-l-pdf-2728081265

https://www.nice.org.uk/guidance/ng61/evidence/appendix-l-pdf-2728081265


NICE Supporting People with Dementia and their Carers (2006). London: NICE. Available at at https://www.nice.org.uk/guidance/cg42/resources/supporting-people-with-dementia-and-their-carers-pdf-252703220677 ( accessed on 29 August 2017)

https://www.nice.org.uk/guidance/cg42/resources/supporting-people-with-dementia-and-their-carers-pdf-252703220677

https://www.nice.org.uk/guidance/cg42/resources/supporting-people-with-dementia-and-their-carers-pdf-252703220677