Interim End of Life Care Strategy for Walsall

Nov 2015 – Nov 2017Nov

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Contents

Page

1 IntroductionForeword

Executive Summary

National Context

Local Challenge

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5

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7

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2 A Framework for End of Life Care, Using the “House of Care” model

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3 End of Life House of Care Framework – Organisational and Supporting ProcessesNICE Quality Standard for End of Life Care

End of Life Care Guidelines

Ambitions for Palliative and End of Life Care

NICE Care of the Dying Adult Guidelines

Development of a new National Data Set for Palliative

Care

Funding of Palliative Care

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4 End of Life House of Care Framework – Person-centred coordinated care, through care & support planningGold Standard Framework in Primary Care

Gold Standard Framework in Care Homes

Nursing Homes End of Life Care Diversionary Beds

Direct access and Diversionary Pathways for Palliative

and End of Life Care

Black and Ethnic Minority Communities

Palliative Care Education

Research

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5 End of Life House of Care Framework – Engaged, Informed individuals and carersIndividualised End of Life Care Planning

Bereavement Questionnaire (VOICES)

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6 End of Life House of Care Framework – Health and 25

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Care Professionals committed to partnership workingTRANSFORM Programme

AMBER Care Bundle

Medical Education

Qualified Nurses

Clinical Support Workers

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Advance Care Plans (ACP)

Rapid Discharge Home to Die Pathway

EPaCCS and Electronic Patient End of Life Register

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7 End of Life House of Care Framework – CommissioningCare for patients with Dementia

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Care for Frailty patients

Care for patients with End Stage Respiratory Diseases

Care for patients with End Stage Hearth Failure

Transition from Paediatric to Adult Palliative Care

Services

Implementation

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38

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1.0 Introduction

The first national End of Life Care Strategy for England (2008) set out a whole

systems approach to the commissioning and delivery of end of life care. Envisaged

as a ten year strategy, it has generated considerable momentum and improvement,

which now must be built upon. Many of the principles still hold but inconsistencies

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remain in the quality of care experienced by people who need end of life care, and

those important to them.

The End of Life Care Strategy is now being revisited and refreshed so that national

actions align with both the current needs of the population and arrangements in the

health and social care system following the Health and Social Care Act 2012.

Improving end of life care involves a wide range of people and organisations, across

the health and social care, professional and public, and statutory and voluntary,

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spectrum. It is envisaged that during the next year that the National End of Life Care

Programme will work with colleagues and individuals across that spectrum to

develop an ambitious five year plan for end of life care beyond 2015.

In November 2014, Actions for End of Life Care: 2014-16 was published and sets out

NHS England’s commitments to end of life care for adults and children. The original

End of Life Care Strategy defines End of Life Care as the last year of life, yet we fully

acknowledge that the period in which such care is needed ranges from a few years

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to a matter of months, weeks or days, and into bereavement. Actions for End of Life

Care: 2014-16 has been informed by comments and feedback from people who have

experience of end of life care – as individual patients, carers, families, volunteers or

staff; organisations representing the interests of these people as well as those with

wider professional or societal interest. Importantly, we signal a shift in focus from

‘place of death’ to the broader ‘experience’ of end of life care. Wherever people are,

we want to enable them to live and die well.

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As far as possible, the commitments in the document are aligned with existing plans

and programmes of work within NHS England and partner organisations. They link to

key developments, such as the NHS Five Year Forward View, the Better Service

Integration Project and NHS England’s Commitment to Carers to ensure that

excellent end of life care permeates the whole system and reflects death as an

inevitable part of life. Walsall’s refreshed strategy for End of Life Care and

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development very much mirrors the current national strategy and is intended to

summarise the development plans for the next two years.

This strategy is for adult End of Life care and excludes children and young people.

1.1Foreword

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In England, about 1,300 people die every day. Around 900 of them will have wanted

to die at home, but less than half will do so. Some 975 may have needed palliative

care to relieve suffering but 469 will not have received it (Dying Matters Coalition

2010). At this moment, about 25% of all hospital beds are occupied by someone who

is dying. The National Audit Office estimates that at least 40% of those people have

no medical need to be there. Most of us now live longer than ever before. However,

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increasingly more of us, as we age, will live with the consequences of chronic

conditions that can have a debilitating effect on our health and general well-being.

As the population of older people in Walsall increases in coming years, so too, will

the prevalence of long term life limiting conditions such as dementia. Good quality

palliative and end of life care will be important to us all. People’s preferences

regarding place of death were summarised within the 2008 National End of Life Care

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Strategy, in that “most people would prefer to be cared for at home, as long as high

quality care can be assured and as long as they do not place too great a burden on

their families and carers”. We now know that where a patient has a plan in place,

and everyone who is involved in the care of that patient knows about that plan, s/he

is much more likely to die in their preferred place. Good community support can

realise 70% of deaths at home and halve unplanned hospital admissions (National

Council for Palliative Care/dying Matters Coalition 2011). To achieve this, requires a

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cultural and behavioural shift in how end of life care is perceived and in how it is

delivered. The overall aim of this strategy is to raise the profile and importance of

choices in death and dying across all care settings and disease groups, by opening

up discussions which consider care settings, treatment, communication and support

for those bereaved.

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This strategy outlines the proposed improvement of end of life care for all patients

through the integration of services, working towards standards of good practice over

the next two years. Key stakeholders make up the membership of the End of Life

Care Strategy Group, and we are committed to ensuring that the people of Walsall

have access to high quality end of life care, irrespective of their condition, or where

they live.

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1.2 Executive Summary

A working definition for End of Life Care has been developed by the National Council

for Palliative Care (2009):

End of life care is care that helps all those with advanced, incurable conditions

to live as well as possible in the last year of life. It enables the supportive and

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palliative care needs of both patient and family to be identified and met

throughout the last phase of life and into bereavement. It includes physical

care, management of pain and other symptoms and provision of

psychological, social, spiritual and practical support.

End of life care generally describes the period of time 12 months before death, this

being marked by a progressive deterioration of a person’s condition which can vary

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depending on the particular disease trajectory. It can be identified by using the

‘trigger’ question – ‘would I be surprised if this patient died within the next 12

months?’

Health and social care services for people with end of life care needs have improved

considerably over recent years. The work of the hospice movement has provided an

important impetus for this, as has the development of creative partnerships between

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public, independent, community and voluntary sector organisations, working together

to design, develop and deliver services. As people live longer, and with the

increasing prevalence of chronic conditions, it is essential that health and social care

services collaborate further to meet the challenge of planning and delivering high

quality palliative and end of life care for increasing numbers of patients and clients in

Walsall.

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This interim strategy provides a vision and direction for service planning and

delivery, and will be implemented by the End of Life Care Strategic Delivery Group.

This Group consists of representatives from all relevant stakeholders including the

public, clinicians, health and social care providers commissioners, and independent

and voluntary organisations.

For the purpose of this strategy, End of Life Care encompasses:

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Adults with any advanced, progressive, incurable illness and young patients

transitioning from Children’s to Adult services;

Care given in all care settings, including a person’s own home;

Care given in the last year of life;

Patients, carers and family members, including care given after bereavement.

1.3 National Context

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NHS Walsall CCG aim to provide a high quality care for all patients in their last year

of life by aspiring to ensure that all patients nearing the end of life are identified, have

their needs assessed, care planned and provided for, therefore enabling them to live

well and die well in the place and in the manner of their choosing.

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Less people actually die at home when generally this would be the preference for the

majority of people. Therefore the aim is to build on existing high quality community

service provision where elements of the pathway are known to work well whilst

reducing gaps identified with new processes and developments ultimately increasing

preferences at the end of life.

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End of Life Care can be defined as the health and social care received in the period

preceding and after death - provided to both patients and their carers. It is not

disease specific and covers patients with increasing general frailty at the end of their

life; those suffering from dementia, as well as people with those conditions that

traditionally carry a life limiting diagnosis.

1.4 Local Challenge

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Ensuring a good end to life is everybody’s responsibility. End of life care services are

designed to support people who are approaching the end of life to live as well and

comfortably as possible until their death, and to support their carers’ in that process.

It can include any adult with advanced incurable and progressive disease and take

place in any setting, hospice, hospital, home, or elsewhere in the community.

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Palliative care tends to be offered chiefly to patients with incurable cancer, though it

has been estimated that two thirds of non-cancer deaths will be preceded by a

period of chronic illness that may benefit from palliative care interventions (National

Council for Palliative Care 2009). However, potentially a third of deaths that take

place in hospital may have been more appropriately managed elsewhere.

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National patient surveys repeatedly show that the majority of people would prefer to

die at home, yet comparatively few patients achieve this. In 2015, 51.7% of deaths in

Walsall occurred in hospital which is a decrease of 10% compared with 2004 figures.

The hospital death rate is more comparable to the England average of 46.7% and

closer to the regional average of 49.5%. This may be partly as a result of the new In-

Patient Hospice Unit opening five years ago but is also in part of the work of

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Community Services supporting greater complexity at home and using alternative

provision for patients unable to stay at home effectively.

The Figure 1 below shows the figures for Walsall in 2015 and how these compare to both the West Midlands and England for dying in various settings.

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In line with the objectives set out in the NHS Outcomes Framework Domains &

Indicators

Domain 1 Preventing people from dying prematurely

Domain 2 Enhancing quality of life for people with long-term conditions

Domain 3 Helping people to recover from episodes of ill-health or

following injury

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Domain 4 Ensuring people have a positive experience of care

Domain 5 Treating and caring for people in safe environment and

protecting them from avoidable harm

The key objectives of this interim strategy are to embed the recommendations from

the National End of Life Care Strategy (2008) and ‘One Chance to Get it Right’

(2014) into Walsall services, focusing on the following:

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Promote the use of advance care planning to enable people to state their end of

life care wishes and ensure they are adhered to.

Ensure high quality end of life care.

Change the perception of “Death is failure” to “A good death is a successful care

outcome”.

Develop transparent processes for access to rapid response 24/7 end of life care.

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Ensure health and social care professionals have access to appropriate and high

quality training and education.

Improve the coordination of end of life care between varied providers.

NHS Walsall CCG intend for commissioned services to contribute to the following

local defined outcomes:

Increase provision of quality end of life care at home

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Increase the quality of life for patients through supporting management of

distressing symptoms

Reduce strain and anxiety experienced by carers and families

Increase the number of patients anticipated as being at the end of life to die at

home, if this is their preferred setting

Increase the number of patients at the end of life who are cared for in their own

home

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Reduce the number of inappropriate hospital admissions by increasing patient

and family confidence to remain at home

Reduce the number of contacts with out of hours services and emergency

services

Increase provision of, and improving access to, out of hours domiciliary nursing

services

Increase patient and carer satisfaction

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Increase the number of patients and carers who have access to the relevant

information at the right time

Improve choice for patients and families

Improve health and well-being of family carers through anticipating bereavement

and support needs before patients death and involving specialist services for

complex bereavement needs as necessary

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2.0 A Framework for End of Life Care, using the ‘House of Care’ model

NHS England and its partners are using a simple organising framework to

deliver person-centred coordinated care for people with long-term conditions.

This model has been adopted as the framework for end of life care because it

helps to focus attention on the elements that need to be in place to enable high

quality person-centred end of life care to be experienced, and it provides a

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continuum from long term conditions through to end of life care.

The ‘walls’, ‘roof’, and ‘foundation’ of the House of Care represent four

interdependent components which, if present, provide the greatest opportunity

for person-centred and coordinated care (see Fig 1). The framework assumes

an active role for patients and carers in individual care planning, working with

health and social care staff, services and other support agencies.

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Fig 2 End of Life House of Care Framework

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Within each component, are included specific actions to identify inequalities and

seek to address these. Whilst a public health approach to palliative care is not a

primary remit of NHS England, they have recognised that living and dying well

takes place within the context of the wider society, and have specified the

actions that will take place in working with Public Health England, Social Care

and our Strategic Partners to promote communities which are engaged,

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involved and compassionate.

3.0 End of Life House of Care Framework - Organisational and Supporting Processes

3.1 NICE Quality Standard for End of Life Care

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The NICE Quality Standard for End of Life Care for adults (2011) provides a

comprehensive picture of what high quality end of life care should look like; this is

encompassed within sixteen quality statements. There will be a re-focus and

emphasis in the next two years for organisations to be able to demonstrate and

deliver collectively all elements of this standard; this should contribute to improving

the effectiveness, safety and experience of care for adults approaching the end of

life and the experience of their families and carers. The End of Life Strategic Delivery

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Group will progress this work during the next year, with an ultimate aim to provide

evidence of effectiveness against all sixteen quality statements from all services

engaged in delivering end of life care across the Borough of Walsall.

3.2 End of Life Care Guidelines

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The delivery of high quality end of life care remains a key priority for the

organisation. Localised end of life care guidelines based on the five key priorities for

end of life care developed by the Leadership Alliance for the Care of Dying People

(2014) have been developed to guide and support staff in the delivery of patient

care. The end of life guidelines provide an overview of the tools that can be utilised

to support patient care and includes sections which relate to: recognising dying,

communication, decision making, the needs of the family and carers, individualised

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care, review of medication, nutrition and hydration, mouth care, do not attempt

resuscitation, organ and tissue donation, spiritual and religious care, care after death

and symptom management algorithms.

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The localised guidelines have been designed to complement the use of the West

Midlands Palliative Care Physicians Guidelines (2012) and specialist palliative care

advice and support delivered by local services.

3.3 Ambitions for Palliative and End of Life Care

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There are six ambitions for End of Life Care and each of the six ambitions includes a

statement to describe the ambition in practice, primarily from the point of view of a

person nearing the end of life.

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3.4 NICE Care of the Dying Adult

The care of the dying adult’s guidelines provides an evidence-based set of

recommendations for clinical care of the dying adult, throughout the NHS. It

aims to provide guidance to health and care professionals to enable them to

better recognise when a person is dying, how to communicate and share

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decisions respectfully with the dying person and those important to them. The

guidance is specifically targeted towards generalists (those working in primary

care or in care homes) and to those working in a wide range of medical

specialities in which people may die, but who do not have specialist level

training in end of life care.

3.5 Development of a new National Data Set for Palliative Care

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The Minimum Data Set (MDS) for Specialist Palliative Care Services is currently

collected by the National Council for Palliative Care (NCPC) on a yearly basis,

with the aim of providing an accurate picture of hospice and specialist palliative

care service activity. It is the only annual data collection to cover patient activity

in specialist services in the voluntary sector and the NHS in England, Wales

and Northern Ireland. The MDS was developed in 1995, and is coordinated by

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NCPC’s Information Analyst. The questions included in the MDS were revised

in 2008 and new data collection began in 2009. Walsall Healthcare NHS Trust

currently submits data for their acute site Specialist Palliative Care Team.

There is a recognition that data in the specialist palliative care sector needs to

be more robust and comprehensive and this results in significant gaps in our

understanding of end of life care provision and a lack of evidence on what is

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‘good’ end of life care. NHS England and Public Health England are working

together to explore the feasibility, options and costs of collecting individual level

palliative care data nationally and Public Health England is leading the project

to develop a core national data set and test its collection. Consultation on the

data set has begun and the draft data set is ready for testing in the next year

and, if successful, this allows us to benchmark our activity levels, demographics

and diagnostic categories against other similarly sized services across hospital

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and community.

3.6 Funding of Palliative Care

During the year 2010-11 the funding of Palliative Care came into sharp focus.

At this time, the total expenditure on adult and end of life care was £460 million

but there was a wide variation of expenditure on specialist palliative care

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between Primary Care Trusts across the country, ranging from £186 to £6213

per death (Department of Health: Palliative Care Funding Review, 2011). A

considerable proportion of funding came from the voluntary sector through

fundraising and this still remains the case.

In July 2010, the Secretary of State for Health commissioned an independent

review of the funding of dedicated palliative care for adults and children with the

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aim of creating a fair and transparent per-patient funding system, based on an

NHS tariff to meet NHS responsibilities, regardless of the choice of provider.

The review recommended a pilot programme to collect data to build the

evidence base for such a tariff. The initial pilot sites have now concluded the

first two years data collection and this has resulted in the development of

Palliative Care Currency Units for four phases of illness and three care settings.

These settings are Adult Acute Inpatient, Adult Hospice Inpatient and Adult

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Community. This has also been mirrored for Children’s Care. Based on this

information, NHS England and Monitor will develop a national development

currency available for use from April 2017. Walsall Healthcare NHS Trust has

registered its initial interest in further testing the new currencies in preparation

for the possible introduction of a tariff based system of payment within the next

two years.

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4.0 End of Life House of Care Framework - Person-centred coordinated care, through care and support planning

4.1 Gold Standard Framework in Primary Care

NHS Walsall CCG has continued to maintain the success achieved in the

implementation of Gold Standard Framework (GSF); locally which was incentivised

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via the introduction of firstly a Locally Enhanced Service (LES), 2006 and a reviewed

Locally Commissioned Service, which was reviewed and revised in 2014. Currently

of 63 Walsall General Practices only five practices are currently not registered and at

various stages of implementation. The recently appointed Macmillan General

Practitioner Facilitator will be working pro-actively with these remaining practices in

the next twelve months towards implementation.

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Momentum for further development will be maintained by driving the requirements to

claim against the Locally Commissioned Service Specification and regular bi-yearly

updates and education events for lead General Practitioners and Gold Standard

Framework Facilitators. The Professional Lead for Palliative Care will continue to

support any future primary care practices wanting to develop their practice.

4.2 Gold Standard Framework in Care Homes

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Seven care homes were supported to undertake the National Gold Standard

Framework into Care Homes Programme. Of those, two have achieved Beacon

Status with the national team. This programme has not been sustained fully in all

seven care homes, despite a developed education programme available to NHS

staff. Walsall CCG has recently invested additional monies into the Community

Nursing Service to provide additional support to Nursing and Residential Care

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Homes. The focus of this development is a supportive mechanism with the providers,

aiming to prevent hospital admissions but also enable advance care planning and

Gold Standard Framework principles from the patient’s home base.

4.3 Nursing Home End of Life Care Diversionary Beds

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The project to divert palliative and end of life care patients away from admission to

acute trust care, when existing formal or informal care packages break down, and

from acute care to an alternative environment, has been in place since June 2009.

Three beds are commissioned within the one nursing home, with a flexible approach

to an additional three spot purchase beds if available. The three beds are now being

fully utilised, with additional patients being transferred via the spot purchase

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arrangement being utilised frequently. It is the intention to audit the last 12 months of

activity through the facility to gain a better understanding of;

1. To understand demand for this type of facility

2. To gain greater understanding of capacity requirements

3. To understand and demonstrate, if any cost savings, can be made by diverting

patients away from an Acute Trust admission.

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Access to the beds has been achieved through a robust referral process with the

Specialist Palliative Care Team acting as the conduit for referrals. Full evaluation will

be undertaken during the interim strategy period to review all elements of the project.

During the life of the project, additional nursing home providers have been supported

to develop their end of life care skills, resulting in a ‘pool’ of providers being in a

position to tender to provide high standards of general palliative and end of life care.

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4.4 Direct access and diversionary pathways for Palliative & End of Life CareDuring the last year Walsall Healthcare NHS Trust Specialist Palliative Care Service,

partners at St Giles Walsall Hospice and the Clinical Commissioner for End of Life

Care, Walsall CCG have developed operational plans for five diversionary pathways

for Palliative and End of Life Care patients. This utilises three beds within the in-

patient unit as an alternative to hospital admission.

Aim of the project

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For adults (18 years of age and over) identified as entering a number of

agreed management pathways condition, regardless of diagnosis.

Pathway 1 Hypercalcaemia Treatment Pathway

Pathway 2 Lymphoedema Pathway for Cellulitis

Pathway 3 Blood Transfusion Pathway

Pathway 4 Intravenous Antibiotic Therapy for Exacerbation of

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Respiratory Conditions Pathway

Pathway 5 Intravenous Furosemide for Patients with

Decompensated Heart Failure at End of Life Pathway

To divert patients into a Specialist Palliative Care In-Patient bed to offer an

alternative treatment pathway for a number of organisationally agreed

interventions.

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To relieve Winter Pressures on acute hospital services for agreed treatment

pathways.

To offer patients receiving care and support in the end of life pathway (12-18

months) alternative options for sub- acute management of a number of conditions

in an alternative place to hospital.

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To maximise bed capacity and availability within St Giles Walsall Hospice in-

patient unit.

The development will be fully evaluated following “winter pressure” period in the next

year.

4.5 Black and Ethnic Minority Communities

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There is good evidence that there is low use of end of life care services by people of

Black, Asian and Minority Ethnic (BAME) groups. As more emphasis is given to the

impact on health and social services of an ageing population, and the need to extend

the capacity and cost effectiveness of care, it is clear that the numbers of people

from BAME groups aged over 65 are increasing and that the challenge of how to

ensure that end of life care is appropriate and accessible to them all is with us now.

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(Palliative & End of Life Care for black, Asian & Minority Ethnic Groups in the UK,

2013)

Reference: Palliative and end of life care for Black, Asian and Minority Ethnic groups

in the UK. Demographic profile and the current state of palliative and end of life care

provision. Natalia Calanzani, Dr Jonathan Koffman, Irene J Higginson King’s College

London, Cicely Saunders Institute (2013).

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Key areas to consider are: Lack of knowledge and lack of information

Understanding reasons for low uptake to palliative care & hospice services

Understanding religious and family issues

Poor communication

Lack of engagement in end of life care decisions

Future developments:

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To ensure communication skills training is available for all staff

Continue work with MOSAM group to support use of Advance Care Plans

Continue to work closely with Outreach Team, Cancer & Palliative Information &

Support Services

Access to cultural competency training for medical & nursing staff.

4.6. Palliative Care Education

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In order to support staff in the delivery of high quality palliative and end of life care, a

range of in-house education programmes have been developed, these education

programmes are available to all clinical staff and key partners such as Nursing

Homes and Social Care staff.

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The provision of education is reviewed on an on-going basis and is tailored to meet

the needs of the organisation. The current education priorities include:

Mandatory end of life care session

Awareness of Specialist Palliative Care Services

Symptom control

Communication skills training

Advance care planning

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Pre-emptive prescribing

Spiritual and religious care

4.7 Research

Research is extremely important especially in palliative care. We need better

knowledge and more evidence based information to ensure we deliver high quality of

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care and treatment to our patients. However research in palliative care has many

difficulties and challenges. Our patients are very vulnerable, their condition can

change rapidly and they may become too unwell to participate in a demanding

research. Therefore researchers may face many ethical dilemmas and barriers

when designing a trial in palliative care setting.

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Walsall Healthcare NHS Trust’s Integrated Palliative Care Team agreed on active

participation in a research trial. With help and support of local and regional research

teams our team has been approved to take part in Two V Three ‘TVT’ trial.

TVT trail is an international, multicentre, open randomised parallel group trial

comparing a two-step approach (step 1: non-opioids and step 2: strong opioids) for

cancer pain relief with the standard three-step approach of the WHO analgesic

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ladder (step 1: non-opioids, step 2: weak opioids, step 3: strong opioids). This trial is

being conducted by Professor Marie Fallon from Edinburgh.

Primary objective is to establish if a two-step approach can achieve pain control

more quickly and without increased side effects compared to standard three-step

approach. Secondary objective is to find out if a two-step approach improves health

economics.

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We have successfully recruited our first patient in June 2015.

Aim:To continue with active research.

Actions:

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Recruitment to the TVT trial should finish by the end of this year. It has been

agreed that Walsall Healthcare NHS Trust Integrated Specialist Palliative Care

Team would like to participate in appropriate future trials in Palliative Care.

Good Clinical Practice training (GCP). Both consultants in Palliative Medicine

and many of the Clinical Nurse Specialists have successfully completed GCP

training. The goal is to maintain competence within this training in order to enable

future participation in research.

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To continue promoting research in palliative care.

5.0 End of Life House of Care Framework – Engaged, informed individuals and carers 5.1 Individualised End of Life Care Planning

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The Neuberger report ‘More Care Less Pathway’ made 44 recommendations. A key

recommendation stated that the Liverpool Care Pathway (LCP) must be withdrawn

from use by July 14th 2014; this was completed within the Borough of Walsall. A

working group of staff from all care settings has looked at how we will assess and

record care in the last days of life. The key areas considered when evaluating new

approaches were public acceptability, ease of use, compliance with the five priorities

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of end of life care directed by the National Alliance for Dying. These are contained

below.

1. The possibility that a person may die within the next few days or hours is

recognised and communicated clearly, decisions made and actions

taken in accordance with the person’s needs and wishes, and these are

regularly reviewed and decisions revised accordingly.

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2. Sensitive communication takes place between staff and the person who

is dying, and those identified as important to them.

3. 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.

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4. The needs of families and others identified as important to the dying

person are actively explored, respected and met as far as possible.

5. An individualised plan of care, which includes food and drink, symptom

control and psychological, social and spiritual support, is agreed,

co-ordinated and delivered with compassion.

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Additional importance was also placed on the plan of care’s application across all

care settings, encouragement of multi-disciplinary working which can be used across

all ages and demographic and inclusion of the person and their family. The plan of

care would be developed in accordance with the principles and organisational values

of Walsall Healthcare NHS Trust.

The agreed strategy going forward is to develop:

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1. A ‘Decision Making Algorithm’ outlining the first four principles of the care of

the dying – with space for free text in order to document the wishes of

patient and family.

2. An individualised care plan developed from the conversations documented

on the front sheet.

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3. This is supported by prescribing algorithms for key end of life symptoms,

and by prompts for the various aspects of care, which have been reviewed

as part of the process.

4. The whole Individualised End of Life Care Plan is underpinned by robust

guidelines for End of Life Care, developed around the five key priorities

advocated in ‘One Chance to Get It Right’ produced by the National Alliance

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for Dying.

5. Carer Information to include a Carer Diary for use by the family and Multi-

Professional Team responsible for care.

The strategic plan for the next six months will be to complete public and staff

consultation process, develop the above approach and underpin this with and

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education and competency framework to all clinical staff across the Walsall

Health Economy. Progress will be monitored through the End Of Life Care

Strategic Delivery Group.

5.2 Bereavement Questionnaire (VOICES)

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The National Bereavement Survey (VOICES) was commissioned by the Department

of Health and administered by the Office for National Statistics (ONS). The End of

Life Care Strategy published by the Department of Health in July 2008 set out a

commitment to promote high quality care for all adults at the end of life and stated

that outcomes of end of life care would be monitored through surveys of bereaved

relatives (Department of Health, 2008).

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Drawing on this work a Walsall Bereavement Questionnaire has been designed to

use at Walsall Manor Hospital to elicit the experiences of bereaved adults before,

during and immediately following the death of a deceased relative or friend. This will

consider deaths that occurred solely in the hospital.

Questions focus on information, care and communication both before and after

death. The questionnaire brings an overdue and important focus on the experiences

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of relatives/carers at this difficult time. Outcomes of the questionnaire will be used to

improve patient care and support for patients’ carers.

It is anticipated that information and insight gained through the process will be

relevant to the palliative care education curriculum.

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6.0End of Life House of Care Framework - Health and Care Professionals committed to partnership working

6.1 TRANSFORM Programme

6.1.1 AMBER Care Bundle

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The AMBER care bundle forms part of a national initiative Transforming End of Life

Care in Acute Hospitals. The AMBER Care Bundle is a simple approach used in

hospitals when clinicians are uncertain whether a patient may recover and are

concerned that they may only have a few months left to live. It encourages staff,

patients and families to continue with treatment in the hope of a recovery; while

talking openly about people's wishes and putting plans in place should the worst

happen. It consists of four elements:

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talking to the person and their family to let them know that the healthcare

team has concerns about their condition, and to establish their preferences

and wishes

deciding together how the person will be cared for should their condition

deteriorate

documenting a medical plan

agreeing these plans with all of the clinical team looking after the person.

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The patient’s condition is then monitored closely and followed up on daily basis to

record any changes and address any concerns that they or their family may have.

The AMBER care bundle contributes to people being treated with dignity and respect

and enables them to receive consistent information from their healthcare team. It

helps people and their carers to be fully involved in making decisions and knowing

what is happening with their care.

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By having conversations about preferences and wishes and ensuring that everyone

involved is aware of care plans, people are more likely to have their needs met.

Full support for the implementation of this initiative was obtained from the Director of

Nursing, Medical Director and Heads of Nursing for Medicine & Long Term

Conditions and Surgical Divisions. Awareness raising around the implementation

was also included as part of the Medical grand round, Clinical Update, Chief

Executive Update and GP communications.

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To support the roll out of this initiative engagement from both medical and

nursing teams was required on each ward. Nursing champions for each ward

were also identified (x2 qualified nurses and x2 Clinical Support Workers).

Following on from the engagement process it was felt that both nursing and medical

staff using the AMBER Care Bundle would require training on the practicalities of

using the bundle. In addition to this it was also felt that nursing staff may go onto to

deliver End of Life Care to those patients that have been identified as dying and

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additional education on End of Life Care would also be required.

Ward based at Walsall Manor Hospital staff both trained and untrained receive an

explanation of the background to the AMBER care bundle and the aims of its use,

and completion of the relevant AMBER documents. Each team is issued with a

folder containing care bundle literature for their use. All staff are encouraged to

access further palliative care training through the Palliative Education Programme in

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order to support their practice. AMBER care champions are encouraged to support

the use of the AMBER care bundle and to support team members and any new staff

with utilisation of the bundle. Medical teams are also trained on completion of the

AMBER care bundle and identification of appropriate patients. This has now

supported the incorporation of the AMBER care bundle within the electronic

discharge summary.

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6.1.2 Medical Education

We have presented information on the AMBER care bundle to the Medical Grand

Round, and to GPs during targeted end of life teaching. Information on end of life

care is now given to all doctors at their induction and AMBER forms part of this. We

provide ongoing face to face education of doctors on AMBER wards, when we visit

the wards in order to support the bundle. We find that the face to face education is

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the most effective, as it enables us to demonstrate how AMBER might help in a

given situation.

We also provide education to FY1s and FY2s, core medical trainees, Specialty

Registrars from varying departments and medical students. We deliver advanced

communication skills training in Birmingham (to multi-professional groups) and

locally (to senior hospital doctors).

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6.1.3 Qualified Nurses

Qualified nurses who are identified as AMBER care champions undertake the two

day Palliative Care Foundation Programme and the two day Advance Care Planning

training. Following on from completion of the theoretical training staff also complete a

three day clinical placement which included spending a day with the Community

Clinical Nurse Specialist in Palliative Care, a day in Fair Oaks Day Hospice and a

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day in St Giles Walsall Hospice. This provides a good overview of Palliative and End

of Life Care delivered within a number of settings including home, day hospice,

hospice and potentially nursing / care homes.

6.1.4 Clinical Support Workers

The clinical support workers identified as AMBER care champions also complete the

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Principles of Palliative Care Study Day and spend a day with either Fair Oaks Day

Hospice or St Giles Walsall Hospice teams.

6.2 Advance Care Plans (ACP)

Walsall Healthcare NHS Trust were successful in bidding for funds from ‘SHA’ in

June 2011 in relation to developing the workforce involved in End of Life Care ; this

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funding was utilised to support the development of an Advance Care Plan for use

across Walsall Health Economy underpinned with providing communication skills

training .

Aim of the project: To provide a robust education programme for health & social care staff on

advance care planning and advanced communication skills.

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To support existing tools for co-ordination and care delivery: GSF& Preferred

Place of Care.

Objectives: Develop Advanced Care Plan template for use across Walsall Health Economy

Develop a supporting policy to offer guidance to health & social care

professionals when offering Advanced Care Plan to service users

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Deliver 2 day training programme on Advanced Care Planning & Communication

Skills

Training to be rolled out & delivered by Palliative Care Education Co-ordinator &

Clinical Psychologist

Sustainability of project:

Established governance network via End of Life Care Delivery Strategy Group

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Established ACP group (subgroup of strategy group) to monitor training

Training Programme to be available on a rolling programme

Since the implementation of the project, the above objectives have been met and

continue to be supported. The Walsall wide Advance Care Planning document has

been utilised effectively across the community services including Specialist Palliative

Care Teams and Community Nursing.

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Walsall Healthcare NHS Trust participated in a Birmingham, Solihull & Walsall

Palliative Network wide Advance Care Planning audit in 2014. This highlighted that

information sharing across the network and with Out of Hours services was limited.

However Walsall was identified as leaders locally in the development and

implementation of the ACP document.

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The number of completed Advance Care Plan documents each month are recorded

and reported to the End of Life Strategic Delivery Group each month.

As part of the TRANSFORM Programme, Advance Care Planning training is a

substantial training element provided to the AMBER care champions.

Future developments:

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Use of ACP Document with patients with dementia

Develop action plan to increase use of ACP document across acute site

Continue to offer ACP training to health care professionals

Delivery of training to Social Care Staff

Undertake audit of patient’s views and benefits of the ACP documents

6.3 Rapid Discharge Home to Die Pathway

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Rapid Discharge Home to Die Pathway development is one of the key enablers

within the national TRANSFORM programme; the Implementation/ Development

Team have worked to develop a four hour discharge pathway for people who are

clearly dying and want to die at home. Work has progressed slowly due to delays in

developing the Standard Operating Procedure in the specific areas of rapid access

to the correct level of transportation and the introduction of a Walsall Borough wide

Do Not Attempt Cardio-Pulmonary Resuscitation. The pathway has been in a testing

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phase during the months of August and September 2015. Following the test phase

the project plan will be to embed the 9-5 Monday - Friday planning provision and

then look to phase 2 which will include scoping beyond normal working hours and

seven days a week.

6.4 EPaCCS and Electronic Patient End of Life Register

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In 2013, the Trust began to design an electronic solution to identify and enable data

capture of individuals approaching the end of their life. At this point there was good

evidence that an EPaCCs will contribute to increasing the quality of end of life care

to those individuals receiving it by improving co-ordination and communication

across sectors, ensuring that all those involved in care are aware of individual’s

wishes and preferences. The information was recorded using the Gold Standard

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Framework template, which is a nationally agreed model for supportive decision

making for clinicians, individuals and their families.

This was a Walsall Health Economy approach and the engagement with Primary

Care had been strong. This was a two phased development, Phase 1 to begin

populating the templates which would then form a register. Phase 2 release and

development of the electronic solution included alerts and notifications into Accident

and Emergency and to General Practitioners and Key Workers on discharge from

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acute care for all patients on the register. However, has been delayed in response to

concern raised by our local Clinical Commissioning Group and the need to develop

an agreed Protocol Sharing Agreement. At this time the template was compliant with

the National Information Standard published in March 2012. The additional major

issue encountered during development was interoperability with all partners IT

systems, which is being worked on nationally at present. Third issue that remained

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difficult was Walsall Healthcare NHS Trust were at the point of implementing a new

IT System which brought challenges and new opportunities.

It is envisaged that in the next two years this project will be re-focused after a period

of stabilising the system and engagement with the National End of Life Programme.

7.0 End of Life House of Care Framework – Commissioning

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7.1 Care for Patients with Dementia

Caring for the dying person with dementia, and the person dying from dementia,

pose particular challenges wherever the care is being provided. In Walsall there is a

very active dementia programme with a focus being placed on discussions around

end of life decisions being facilitated at diagnosis. We have an active group

considering end of life care in patients with dementia with good representation from

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commissioners, community and hospital services and the voluntary sector. There

are particular challenges within the hospital, particularly around feeding patients with

end-stage dementia; the appointment of a nutrition nurse and establishment of a

Nutritional Multi-Disciplinary Team has helped with this.

Aims for the future: To continue to discuss and highlight issues around death and dying in dementia.

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To further develop the service within the hospital to ensure that all patients dying

from dementia have appropriate and compassionate care.

7.2 Care for Frailty patients

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Patients with frailty are currently managed in the community or with the support of

the FEP (Frail Elderly Pathway) staff in the hospital. Palliative Care Services get

involved at other professionals’ request. Walsall Healthcare NHS Trust is developing

improved Frailty Services with the appointment of a new consultant in elderly care

and the development of a frailty unit. The palliative care teams will be working with

the staff of this unit to understand how best we can work together.

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7.3 Care for Patients with End Stage Respiratory Diseases

Respiratory diseases represent a major cause of morbidity and mortality in the UK

and worldwide with COPD being currently the fourth common cause of death

worldwide.

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There is great evidence that patients with advanced respiratory diseases suffer from

many distressing physical and psychological symptoms (Tranmer et al, 2003).

Symptom burden in patients with advanced COPD is at least as severe as in patients

with advanced cancer (Hill and Muers 2000). Some symptoms such as

breathlessness, fatigue and anxiety are even more common than in patients with

advanced cancer (Solano et al, 2006). Patients with advanced COPD are often

housebound and receive little support from community services (Elkington et al

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2004, 2005). They suffer from high degree of social isolation (Skilbeck et al 1998,

Elofsson and Ohlen 2004) and their carers suffer as well (Jones et al 2004, Seamark

et al 2004).

Studies have shown that patients with end-stage COPD often prefer treatment

focused on comfort and they do not wish to be intubated or resuscitated (Claessens

et al 2000). However in reality they are more likely to be admitted to acute hospitals

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and treated aggressively, they are less likely to know that they are dying and less

likely to receive treatment for symptom control (Lynn et al 2000, Edmonds et al 2001,

McKinnley et al 2004).

Aim:To ensure high quality palliative care and support is delivered to all patients with end

stage respiratory diseases and their families, if they agree with this input.

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Actions:1. Walsall integrated Specialist Palliative Care Team has been closely co-operating

with Hospital and Community Respiratory teams. We perform joint reviews and

assessments of patients with advanced respiratory conditions in the hospital or

community settings. We plan our care according to patient’s needs and wishes

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and try to avoid unnecessary hospital admissions by maximising community

support.

2. In March 2015 we have developed “Specialist Palliative Care Guidelines and

Management Plan for patients with Severe Advanced Respiratory Diseases”.

These guidelines have been produced collaboratively by members of Specialist

Palliative Care, Respiratory, Community COPD and Physiotherapy teams of

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Walsall Healthcare NHS Trust, with help and support of a Walsall GP

representative and a Community Matron. They serve as a brief guide for health

care professionals who deal with these patients and cover referral criteria to

palliative care, common symptom control and management of last days of life.

They have been ratified and available for use since July 2015.

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3. Health care professionals are encouraged to discuss complex patients with

respiratory conditions at our Walsall Combined Specialist Palliative Care

Multidisciplinary Team Meetings (C SPC MDT), which take place at Walsall

Manor Hospital weekly, on Tuesdays from 13.00 – 14.00. Personal attendance of

all professionals involved in patient’s care and contribution to the discussion and

treatment plan formation is essential and expected.

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4. Palliative patients with respiratory conditions who receive treatment under the

Respiratory Team at Royal Wolverhampton Hospitals NHS Trust can be referred

and discussed at their Respiratory MDT. This is another example of

multidisciplinary and inter-organisational approach. Our plan is to establish a

similar Respiratory MDT in Walsall. It has been preliminarily agreed by palliative

care and respiratory teams. The details and the starting days are currently under

negotiation.

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5. To maximise effective utilisation of Intravenous Antibiotic Therapy for

exacerbation of Respiratory Conditions Pathway in St Giles Walsall Hospice.

7.4 Care for Patients with End Stage Heart Failure“Heart failure is a complex condition causing breathlessness, fatigue and fluid

retention due to functional or structural cardiac abnormalities. Heart failure is now the

only cardiovascular disease increasing in prevalence. In the United Kingdom, heart

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failure affects about 900,000 people with 60,000 new cases annually. It is

predominantly a disease of older people. At least 5% of those aged over 75 years

are affected, rising to about 15% in the very old”. (End of life care in heart failure. A

framework for implementation)

“For the year 2007- 2008, there were almost 60,000 admissions with heart failure in

England and Wales, requiring more than 750,000 bed days. Some of these

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admissions might be avoided with anticipatory care planning and the provision of

community health and social care support”. (End of life care in heart failure. A

framework for implementation)

“Despite therapeutic advances, heart failure remains a progressive, incurable and

ultimately fatal long term condition which has a major effect on affected individuals

and their families.

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The symptomatic burden and mortality risks are similar to common cancers and of all

general medical conditions heart failure has the greatest impact on quality of life.

Despite a growing recognition of the requirement to provide supportive and palliative

care for this clinical cohort the recent National Heart Failure Audit demonstrated

continuing significant unmet needs: only 6% of those dying with heart failure were

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referred to palliative care”. (End of life care in heart failure. A framework for

implementation)

Aim: To ensure all patients suffering from end stage heart failure are provided with high

quality of palliative and supportive care based on their needs. To ensure family

members and carers looking after these patients are also supported.

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Actions:1. Walsall Integrated Specialist Palliative care team has established close

cooperation with cardiologists, hospital cardiac nurses and community heart

failure team. Joint visits and shared care when reviewing patients in the hospital

or community settings are the usual practice.

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2. Presently we are utilising locally agreed Heart Failure Guidelines developed by

the cardiac team and we plan to revise the palliative care section by 2016.

3. We conduct regular Heart Failure MDT, where we discuss complex patients with

advanced cardiac conditions together with a cardiologist, cardiac nurses and

community nurses.

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4. We utilise Walsall Combined Specialist Palliative Care Multidisciplinary Team

Meetings (C SPC MDT) for joint discussions of complex patients with end stage

cardiac conditions.

5. The Integrated Palliative Care Team contributed to revision of Walsall Healthcare

NHS Trusts “Guideline for the Deactivation of ICD therapy in Adult Patients with

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Heart Failure”. Guidelines were developed by Walsall Cardiac team and are

currently awaiting ratification.

6. To maximise effective utilisation of the Intravenous Furosemide for patients with

Decompensating Heart Failure at End of Life pathway in St Giles Walsall

Hospice.

7.5 Transition from Paediatric to Adult Palliative Care Services

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Advances in medicine mean that more and more young children with life-limiting and

life-threatening conditions are living longer and surviving into adulthood.

In spite of great effort to improve transition from paediatric to adult services

nationally and recent provision of national recommendations and guidance, in many

places this process can be still chaotic and not well organised.

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Evidence available from the research has shown that young people and their families

find this period very confusing, distressing and scary.

Only 50% of young people and their parents said they had received support from a

lead professional during the process leading up to transition to adult services. (Care

Quality Commission 2014. From the pond into the sea: Children’s transition into

adult services)

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Aim:A multidisciplinary group has been established with the aim to develop a framework

for transition from paediatric to adult palliative care services in Walsall. Members of

this group are representatives from all sectors of adult and paediatric palliative care,

Learning disability nurse, community nurses, GP representative, paediatrician and

commissioners.

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Actions:1. Young palliative care patients entering transition period will be identified by

paediatric team at the age of 14 and informed about future transition process.

2. Representatives from paediatric and adult palliative care teams will meet 3-4

times per year to assess the needs and wishes of those palliative care patients

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who become 16-17 year old. This subgroup will also identify adult services which

these patients may need in the future.

3. Early introduction of adult palliative care services is absolutely crucial to

decrease anxiety of young patients and their families. We have changed our

operational policy so currently we are able to perform joint visits of young patients

together with their paediatric team from the age of 16.

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4. In order to provide young patients and their families with information about adult

services we plan to develop an information pack in a DVD format, which we

hope, will be easier to use by young patients.

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5. We also plan to organise an afternoon event at Walsall Palliative Care Centre to

enable young patients and their families to visit the Centre and meet adult health

care professionals in an informal non-scary way.

6. We work closely with “Ambassadors” (successfully transitioned young adults),

who help us to better understand young patients’ needs and to adjust our

services accordingly.

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7. Jointly with paediatric team we plan a teaching event for Walsall health care

professionals to learn about different aspects of care, communication and

symptom control when dealing with young patients.

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Strategic Implementation

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Description Indicator

Measurement

Assumptions

Responsibility

Date for Realisation

Implementation of Individualised End of Life Care Plan across the organisation

Proportion of all deceased patients who had an end of life care plan or documentation that a care plan had been implemented

Audit the number of End of Life Care Plan documents completed

That more patients dying and carers receive a structured approach to end of life care.

Professional Lead for Palliative Care

January 2016

Action plan from the 5th National Audit of Dying in Acute Hospitals

Required parameters are met

National Audit Summary

That improvement will have occurred

End of Life Strategic Delivery Group

To be confirmed once results received in March 2016

Continue to develop relationships with Trust

Evidence of public involve

Evidence of level of engage

Public engaged in all key

End of Life Strategic

On-going

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