Supplementary Report
2: Report of the
Palliative Care Strategy
Development
Stakeholders Event
Prepared by the Lothian Palliative Care Steering Group as part of the development
of the Lothian Palliative Care Strategy 2010-2015: Living and Dying Well in Lothian
July 2009
Contact Details
If you would like any further information about anything contained within this report,
please do not hesitate to contact the Cancer and Palliative Care Programme at:
Living and Dying Well in Lothian Consultation
NHS Lothian
Deaconess House
148 Pleasance
EDINBURGH
EH8 9RS
Tel:
Email:
Web:
0131 536 9057
[email protected]
www.nhslothian.scot.nhs.uk/ladwinlothian
1
Contents Page
Introduction
3
Methodology
4
Findings of Adult Palliative Care Groups
5
Findings of Paediatric Palliative Care Groups
7
Appendix One: Notes of Adult Palliative Care
8
Appendix Two: Notes of Paediatric Palliative Care
30
Appendix Three: Delegates
41
2
Introduction
Palliative care is ‘an approach that improves the quality of life of patients and their
families facing the problems associated with life-threatening illness’ (WHO 2004).
Patients’ palliative and end of life care needs can be met by a variety of health and
social care workers such as GPs, community nurses, professionals in hospitals,
care homes and social care providers. Specialist palliative care services are
available for patients with complex symptoms. Within NHS Lothian, the voluntary
sector is integral to the delivery of palliative care; all the specialist inpatient
palliative care beds are provided in partnership with the voluntary sector.
Since the last NHS Lothian Palliative Care strategy in 1998 many improvements
have been made to the delivery of palliative care. The establishment of the NHS
Lothian Palliative Care Managed Clinical Network (MCN) in 2001 has enabled the
coordination of planning and delivery of services to take place across
organisational boundaries.
In August 2008 Audit Scotland published the ‘Review of Palliative Care Services in
Scotland’. This identified much good practice but also significant areas for
improvement. In particular it suggested that specialist services were focussed on
patients with cancer. This means there is inequity of access for other patient
groups.
Many of the points raised by Audit Scotland were addressed in ‘Living and Dying
Well’ which was published in October 2008 and is the Scottish Government‘s first
action plan for palliative care.
Key aims of the action plan are to:
• Enable clinicians to identify, assess and review palliative and end of life care
needs for patients
• Plan and deliver care for patients with palliative and end of life needs
• Improve of communication across providers
• Ensure there is a range of educational opportunities to support the
workforce
• Develop further solutions by setting up a range of working groups for
palliative care
NHS Lothian is now reviewing and updating its Palliative Care strategy. To support
its development the strategy steering group recognised the need to consult widely
with professionals working across services and organised a stakeholders event.
The objectives were:
• To engage with a wide range of health and social care professionals across
Lothian
• To understand others’ views on the best way to develop palliative care
across Lothian
• To ensure that people understand the recently published Scottish
Government action plan Living and Dying Well and the framework in which
the Lothian strategy is being developed
3
Methodology
The stakeholders event was held on 28 January 2009. Invitations were sent to a
wide range of health and social care professionals working across Lothian. A list of
those present are noted in appendix 3 on page 39.
Thirteen discussion groups of up to 10 people were created, with a mixture of
health and social care professionals from different settings in each group.
Children’s palliative care professionals were grouped separately to allow more in
depth discussion of the distinct needs of this patient group.
Delegates were asked to consider what they would like palliative care services to
look like in 5 years time, to consider the challenges to achieving this vision and
possible solutions to these challenges.
The results of these discussions were summarised on the day and recorded for
each group. For the purposes of this report, findings have been collated
thematically. A detailed write up of themes can be found in appendices 1 and 2 of
this report.
Following the event, a draft report was written up and circulated to all delegates
and any other interested people. Comments were invited. Based on these
comments, this final draft has been developed.
4
Findings of Adult Palliative Care Groups
The feedback from groups considering adult palliative care has been collated into 9
key recurring themes. In no particular order, these themes are:
1. Ensuring Equity of Access
There is a clear desire to improve access to palliative care for all patients
regardless of diagnosis over the next 5 years. This includes ensuring access to
services for people with both malignant and non malignant diagnoses. However
other ideas were also expressed: ensuring access for disadvantaged groups,
access for patients of all ages and access to services regardless of geographical
location.
It was recognised that we may not have all the solutions to this challenge yet;
however ongoing research and evaluation are vital if we are to begin developing
new models of care and ensuring access to services is more equitable. Comments
made by delegates on the day and since have made clear the importance of
considering that we should ensure that we consider the diverse needs of all patient
groups including the 6 strands of diversity (age, gender, race, religion, sexuality
and disability). To truly ensure equity of access, consideration must be given to the
different needs of patient groups with their different diagnoses.
2. Coordination of Care
The challenge of co-ordinating care for patients across different services was
highlighted. Delegates requested clear goals, clear pathways and joined-up
working between health and social care. It was suggested one way of enabling
better coordination of care would be for every care setting to have a palliative care
link worker and clearly identified access to support and specialist advice.
3. Providing Better Support for Carers
The vital role of carers in providing informal care was recognised. Delegates
wanted to see the provision for increased support for carers. This would include
more responsive services which react to changes in a patient’s clinical condition
and bereavement services to provide support to carers following death.
4. Supporting Choice in Preferred Place of Care (PPC) and Preferred Place of
Death (PPD)
The subject of patient choice was highlighted in a number of groups. There was
support to provide choice for patients in relation to place of care. However it was
stressed that the patient must have the right to change their mind. It was
suggested that achievement of this goal could be measured by comparing patients’
chosen place of death as identified in their notes with actual place of death. Audit
of this would also show that discussions around end of life care had been initiated.
NHS Lothian is committed to ensuring that patients with cognitive impairments
such as dementia and learning disabilities have the opportunity to be fully involved
in the planning and delivery of their care.
5
5. Increasing Access and Support for Community Care
Whilst it was commented that patients and carers should be given choice in where
they die, to support this, it was felt necessary to increase the capacity and skill of
community services so that more patients could be cared for at home, in care
homes and community hospitals.
6. Improving Communication
Improving communication across settings was seen as a prerequisite to supporting
improvements to the coordination of care. There were a number of suggestions for
improvements to IT, particularly with partner organisations such as hospices and
social work services. There were also wider discussions around improving
communication across professional groups and with patients. Challenges around
providing time for staff to do this were acknowledged. A number of potential
solutions were identified; these ranged from the practical, e.g. providing
administrative support to District Nurses and Clinical Nurse Specialists, to the more
‘high tech’ such as developing video conferencing. All of these aim to support
better information sharing. It is recognised that there are communication
challenges with patients, for example if different languages are spoken or if a
person is cognitively impaired.
7. Providing Education and Training Opportunities
There is recognition that education opportunities are available; however accessing
these can be difficult. A number of reasons for this were suggested. These
included cost of courses, time to attend and difficulties of backfill for staff. There is
widespread support for increasing access to education and training for health and
social care workers in all settings. This would support the delivery of care by
ensuring that professionals are confident and competent in all aspects of end of life
care.
8. Changing Culture
The comments placed under changing culture relate to a range of ideas which
required a change in the thinking of all involved: clinicians, patients, carers and
wider society. These include a greater emphasis on anticipatory prescribing and
planning, a clearer definition of palliative care which focuses on the holistic
assessment of patients and making end of life care ‘core business’ of health and
social care providers.
9. Developing a health promoting palliative care approach
Delegates commented that in a number of groups the taboos around death and
dying held by wider society can make end-of-life discussions with patients and
carers difficult. It was recognised that this might not change in the short term, but
could be a long term goal. A number of ideas to support this were suggested
including using the term ‘end of life care’, rather than ‘palliative care’.
6
Findings of Paediatric Palliative Care Groups
The feedback from the groups discussing paediatric palliative care has been
collated. Thematic analysis has identified 5 key themes and these are listed below.
A number of challenges to the provision of paediatric palliative care were identified
as being relevant to all of these themes; particularly, that there are only small
numbers of paediatric patients requiring end of life care. However the feedback
provides some good ideas to take this forward over the next 5 years. The themes
that were identified are:
1. Supporting Choice
Families should be given choice about where they receive care and where their
child dies. It is recognised that due to the small volume of patients requiring these
services, there are some challenges to providing a sustainable service. However,
by working regionally and even nationally it was thought that choice could be
supported.
2. Coordination of Care
Improving the coordination of care requires the development of tools and
processes across health and social care systems. An agreed definition of
paediatric palliative care must be developed and this should then be used to
support more effective identification and assessment of patients. Services also
require development to support transition for families and patients who are moving
from curative to palliative treatment and patients moving from paediatric to adult
services. Coordination of care can be supported by developing clear pathways for
multi-disciplinary teams and developing use of technology such as telemedicine.
3. Service Development
To support the choice and coordination of care, there are a number of service
development proposals included within the feedback. These ranged from
development and establishment of service standards to creating a regional
paediatric palliative care team. It is also acknowledged that there needs to be more
data to underpin future service developments.
4. Education and Training
Enhanced education and training opportunities are required to underpin the
delivery of services.
5. Support for Families
All the feedback suggested that there was a need to develop support for families.
Support can come in a number of forms including the financial advice, providing
information and bereavement support. Services already exist within the Royal
Hospital for Sick Children; however, NHS Lothian receives many tertiary referrals
and links with support provided out-with the Lothians may need to be developed.
7
Appendix One:
Notes of Adult
Palliative Care
8
Appendix One
Ensuring Equity of Access
What will we be doing in 5yrs
time?
How will we know we’ve
achieved this?
What barriers and obstacles
exist?
What solutions are there to
these challenges?
• Easy / equal access to advice and
services across the health and social
care settings, in community and care
homes.
• Palliative care for all.
• Better bereavement care, especially
in rural areas.
• There should be access to reliable
good end of life care for all.
• All staff will provide the same quality
of care, regardless of the context.
• There will be easy access to
medications in all settings at all times.
• Access to the right service will be
available to all patients based on their
needs.
• More patients with a non –malignant
diagnosis will have their palliative
care needs addressed.
• More people with cognitive
impairments accessing services
tailored to their needs.
• Care for all regardless of diagnosis /
geography.
• Improved access to equipment
regardless of location of patient.
• Improved access to medications and
equipment. Particularly highlighting
subcutaneous fluids.
• Delivering palliative care to people
with other conditions other than
cancer.
• Aim to deliver services by identifying
who will benefit and when, even if
they have an unpredictable Long
• People will have been diagnosed as
being in the palliative and / or end of
life phase and recognised tools will be
being used.
• Demand will then rise for information
and services for all 3 trajectories
(cancer, organ failure and old/frail)
• Palliative and end of life care will be
included in education & learning
opportunities as the norm. For
example will be included in induction
and dementia training.
• Specialist courses associated with
organ failure and frail/older patients
• Measuring use of GSF throughout
community
• Measuring LCP use
• There will be an increase in the
proportion of hospice expertise used
to support non malignant conditions
• Direct entry to community hospitals
for generalist palliative care.
• More specialist palliative care
services provided for people with a
cognitive impairment
• Numbers and diagnoses of patients
on palliative care registers
• Increased use of SIGN 44 tool
• Appropriate use of hospice facilities
• Developed and tested models of
service for non malignant groups and
implemented those that are effective
• All care homes will receive a
minimum level of support from
surrounding healthcare teams such
• Funding
• Staff to provide the services: hospital,
community (health & social care).
• Lateness in providing palliative/end of
life diagnosis – often then too late to
provide in care in “preferred place” etc
• Willingness to change: Staff ‘attitude’
and wider population
• Diverse communities, respecting and
managing views that might differ both
in public and professional context.
• Lack of understanding and confidence
in responding to change in practice.
• Lothian provides regional services as
well as services for the local
population
• We don’t have a methodical approach
to say: What we need to do, how it
will get done, who will do it, who are
our partners and to develop ideas into
bids ready for submission for
development and improvement
monies or other sources of funding
• Don’t always share good practices
therefore have pockets of really good
in one area and just down the road /
corridor not so good practice
• Workforce and demographics:
increasing elderly population. Will
health and social care have enough
people with the right skills to meet the
needs of a growing and ageing
population with a wide range of needs
and higher expectations?
• Time constraints – teams already
• Lothian Wide Palliative and End of
Life Care Strategy: to include: NHS
Lothian, regulated care services,
Local Authorities and voluntary sector
• Strategy to include: L.C.P in all care
settings, implementation, Practice/
Support and Gold Standards
Framework: Surprise Question
• Review and plan staffing
requirements in all settings (health &
social care, multi-disciplinary) .
Expectation is that will need more
staff but are aware might not be the
people out there who want to work in
health and social care.
• Resolve complex care issues – fund
CEL 6 & NHS continuing care.
• Build baseline information
• Link with other initiatives proactively
and to become the norm rather than
working in silos.
• Health & Social Care – joint budget?
• Admin support for both specialist
teams and District Nurses
• Recognition of skills already available
• Clear ‘trigger’ for referral to specialist
services
• Change of ethos and practice – e.g.
out patient clinics run by CNS
• LTC – joint visits/ acting as a
resource only
• More dynamic caseloads e.g.
increased rated of discharge/rereferral
• Build on GSF – needs to have more
9
Appendix One
Term Condition.
• Appropriate places of care for patients
will be identified including younger
adults (20-50’s).
• Consistent standards of palliative care
delivered for patients with all
diagnoses across all care settings.
This includes across hospice,
community and hospital settings and
within each setting e.g. consistent
access to community palliative care
provision across Lothian. This will
address current inequities for certain
patient groups such as those with
Dementia.
• There will be equity across services in
access to the resources necessary to
develop palliative care provision.
• Palliative care will be considered for
all patient groups rather than just
some e.g. cancer.
• Efficient processes of arranging care/
equipment/ medications to allow a
speedy response to changing
circumstances and wishes/ needs of
patient and carer.
• Equity of access to palliative
medication over 24 hrs – non-medical
prescribers to avoid delays –
anticipatory prescribing – up skilling
Health Care Assistants and social
carers to administer medications.
• Greater access to psychological
support and services.
• Improve delivery of palliative care so
that patients in all care settings who
require it, receive effective palliative
care
• Direct access to specialist services
without need to go via GP / consultant
as interested local GP teams and/or
nursing input from the local hospice
• Equitable access to hospices and
specialist palliative care services for
all patient groups- increased
proportion of non malignantmalignant referrals.
• More resources for general services
rather than just focussed on specialist
will be apparent through supported
service development in general
settings.
• People with learning disabilities,
mental health problems and cognitive
impairments are appropriately
assessed and equitably assessed for
palliative care services.
10
working at beyond capacity
• Lack of administrative support for
specialist teams. Clinical Nurse
Specialists should not be doing their
own photocopying!!
• Different models of working within
Lothian alone
• Increasing numbers of patients
• Increasing elderly population
• Resistance to change?
• Definition of palliative care not helpful
for other agencies e.g. SW/Care
Homes
• There are fewer referrals for people
with non-malignant disease.
• Capacity planning for care of the
elderly / care homes etc – if people
are unable to die at home and
hospice beds are only for complex
need where will the other people die
well?
• Services see themselves as distinct in
providing palliative care rather than
joined up with other services and
settings
• Evidence that LCP and GSF are still
not well utilised/ cascaded.
• How much to spend on up skilling
generalists vs. increasing specialist
capacity- balance of investment is
required.
• Many in the group have not heard
about LDW, GSF or LCP before this
meeting today
• Difficulty identifying when patient
becomes ‘palliative’
• Moving away from curative intent –
difficulty for staff in letting go
• There are a number of challenges to
developing joined-up care across
robust approach with some practices
• The adoption of the case
management model- this features a
named person, anticipatory care
planning and could link up with Long
Term Conditions (LTC).
• Suggested that there is a lead
palliative care person in each
ward/department.
• Review current bed utilisation from
across the acute sector, care homes,
community settings and hospices.
• Identification of more resources by
identification of new money or
reallocation of existing resources
• Care homes, community hospitals
and continuing care hospitals funded
to always have empty bed to accept
crisis admissions for nursing care.
• Clinical ‘champions’ will be supported
by recognition of their role in the
organisation and empowered to
deliver via support forum for all
champions and allocated time to fulfil
role.
• We don’t recognise good practice in
general care settings as we shouldwe usually only focus on the
negatives and when things go wrong.
Need for some forum/ way to
highlight what’s being done well and
look at how this can be shared.
• Visibly cohesive services
• Aim for 50% of hospice resources to
be dedicated to non-cancer patients.
• Use existing resources more
effectively by identifying areas of
excellence
• Workforce plan for the future and
consider new models such as
Appendix One
• In 5 years we will have improved our
intermediate palliative care bed
capacity.
Lothian- there is variable service at
weekends; health and social care use
different IT systems; variable district
nurse cover for end of life patients;
lack of awareness about other
services; lack of training opportunities
for social care workers and different
responsibilities of care over a 24 hour
period.
• The way clinical staff are trained
• Language used for treatment choices
11
volunteers
• Link nurses in every area to know
when / how to access specialist
services
• Clear and consistent and simplified
access to specialist support if needed
• PAN Lothian approach to avoid
geographical variations
Appendix One
Co-ordinated Care
What will we be doing in 5yrs
time?
How will we know we’ve
achieved this?
What barriers and obstacles
exist?
What solutions are there to
these challenges?
• Nobody should “own” the patient: no
one person / professional will be able
to meet all a person’s needs. Care
needs to be co-ordinated - who does
this might change over time
depending on need
• Palliative Care teams only required for
specialist needs
• Every area will have a palliative care
champion.
• Joined up health and social care
collaborations.
• Everyone working to the same goal.
• More cohesiveness
• Clear pathways
• Clear lines of communication between
services and a defined framework to
follow
• Clear pathways to follow – whether
adult or children’s services
• Link person identified in all generalist
areas to highlight palliative care
issues and to know route of access to
specialist advice.
• Clearly identified key worker for all
patients - patient chooses who?
• Inclusion of social support facilities
• Care homes will be supported to
avoid inappropriate admissions
• Health and social care without
boundaries
• Good anticipatory care planning by
the multi-professional team
• Efficient processes of arranging care/
equipment/ medications to allow a
• People will have been diagnosed as
being in the palliative and / or end of
life phase. Recognised tools will be
being used.
• Demand for information and services
for all 3 trajectories (cancer, organ
failure and old/frail) will rise.
• Named person will be identified in
records, with appropriate people
being involved to meet needs as
required.
• We will see in their records/care plan,
what people want to happen:
regarding preferred place of care,
preferred place of death and DNAR
• Palliative and end of life care will be
included in education & learning
opportunities as the norm. For
example it will be included in induction
& dementia training.
• Specialist courses associated with
organ failure and frail/older patients
• Measuring LCP use
• Use of Special Notes (EPCS)
• Gathering user views
• There will be a key worker/case
manager appointed to support each
patient
• More patients will have anticipatory
care plans
• Electronic notes and resulting audits
• Better systems for sharing information
• Joint network of contacts.
• Awareness of one another’s roles.
• Clear, documented pathways in place
• Funding
• Equipment: volume required will
increase and so will length of use,
need to be able to access required
equipment in all care settings in a
timeous manner
• Staff to provide the services: hospital,
community (health & social care).
• Lots of experienced people are going
to retire soon. How will we harness
their experience and transfer to
others?
• Lateness in providing palliative/end of
life diagnosis – often then too late to
provide care in “preferred place” etc
• Willingness to change: staff ‘attitude’,
wider population, diverse
communities,
• Respecting and managing views that
might differ both in public and
professional context.
• Lack of understanding and confidence
in responding to change in practice.
• We don’t have a methodical approach
to say: What we need to do, how it will
get done, who will do it, who are our
partners and to develop ideas into
bids ready for submission for
development and improvement
monies or other sources of funding
• Don’t always share good practices
therefore have pockets of really good
in one area and just down the road /
corridor not so good practice
• Workforce and demographics:
• New documents come out like L&DW
and are not distributed to generalist
teams. If provided and suggested as
a tool to improving care, accessing
services and relieving anxieties would
have been well received.
• Lothian Wide Palliative and End of
Life Care Strategy: to include: NHS
Lothian, regulated care services,
Local Authorities and voluntary sector
• Strategy to include: LCP in all care
settings; implementation, practice/
support
• Gold Standards Framework: Surprise
Question
• Review and plan staffing
requirements in all settings (health &
social care, multi-disciplinary).
Expectation is that will need more
staff but are aware might not be the
people out there who want to work in
health and social care.
• Resolve complex care issues – fund
Cel 6 & NHS continuing care.
• Develop different models of care
across all care settings. Challenge
existing ways of working. Fully
integrated working.
• Utilise GP enhanced services to
improve quality of care: monitoring
process (robust)
• Build on good practice/share good
practice.
• Build baseline information
• Link with other initiatives proactively
12
Appendix One
•
•
•
•
•
speedy response to changing
circumstances and wishes/ needs of
patient and carer
Smooth transition of care between
settings- existing fragmentation of
care between settings will be
addressed. This will be supported by
facilitating greater understanding
between professionals in different
settings regarding the delivery of
palliative care (incl. challenges) which
can be provided in different settings,
shared documentation and
recognised processes to support
communication and consistency of
care.
Clear referral criteria triggers for
referral to specialist pall care and
good awareness amongst generalists
of there criteria
Widespread use of the surprise
question amongst generalists as a
trigger for palliative care assessment
and management
There will be better integration of
health and social care across
boundaries, e.g. a patient in a bed in
the WGH can be transferred easily to
a care home in Tranent.
Improved interface between palliative
care and LTC work.
and staff know about them
• Increased use of SIGN 44 tool
• Developed and tested models of
service for non-malignant groups and
implemented those that are effective.
• Identify a palliative care champion in
every care setting- care home, district
nursing team, hospital ward and GP
Practice etc. This would demonstrate
buy-in and support across the system
from management
•
•
•
•
•
•
•
•
•
•
•
•
•
•
13
increasing elderly population. Will
health and social care have enough
people with the right skills to meet the
needs of a growing and ageing
population with a wide range of needs
and higher expectations?
Family networks are more
geographically spread: in the future
who will respond and provide care?
Time constraints – teams already
working at /beyond capacity
Different models of working within
Lothian alone
Increasing numbers of patients
Increasing elderly population
Resistance to change?
Care Homes: staff turnover; DN input
or support variable; outcome
measures difficult to monitor;
educational needs of staff difficult and
expensive to meet
Definition of palliative care not helpful
for other agencies e.g. SW/Care
Homes
There are fewer referrals for people
with non-malignant disease.
Poor communication between health
and social care and across
geographical boundaries
Services see themselves as distinct in
providing palliative care rather than
joined up with other services and
settings
Evidence that LCP and GSF are still
not well utilised/ cascaded.
Conflicting views of individual
practitioners
Care providers excluded from
decision making re end of life care
needs and placement.
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
and to become the norm rather than
working in silos.
Develop and implement a
Communication Strategy – lateral
thinking, pan Lothian, multi-agency
Health & Social Care – joint budget?
Administrative support for both
specialist teams and DNs
Common approach by all
Recognition of skills already available
Clear ‘trigger’ for referral to specialist
services
Change of ethos and practice – out
patient clinics run by CNS
Sharing the patient
More dynamic caseloads e.g.
increased rated of discharge/rereferral
Respite care – tap in to existing SW
services/available places rather than
hospices
Build on GSF – needs to have more
robust approach with some practices
Build on GSF – needs to more robust
approach with some practices
Suggested that there is a lead
palliative care in each
ward/department.
Develop patient held anticipatory care
plans.
Aim for a named co-ordinator for
each patient .
Ensure a Anticipatory care plan is in
place
Streamline services so that they are
more co-ordinated e.g. CNS
specialist services.
Developing a shared vision in
partnership with social work. This
could be supported with more joint
Appendix One
• Difficulty identifying when patient
becomes ‘palliative’
• Moving away from curative intent –
difficulty for staff in letting go
• It is challenging to perform holistic
assessments in the clinical time
available, which cover physical,
spiritual and emotional needs etc.
•
•
•
•
•
•
•
•
•
•
14
events, improvements to IT systems
to ensure better systems to aid
information sharing and
communication.
Using identified good practice tools,
e.g. patient mapping, process
mapping, attending/ contributing to
meetings in other care settings.
Create a directory of services which
could be placed online. This could be
used to raise awareness of palliative
and end of life care. A key
requirement is this is kept up to date.
Clarify when to place a patient on a
palliative care register.
Clearly defined mechanisms for
accessing equipment / medications
etc
Awareness of GSF in care homes
and acute settings
Awareness of tools available
including prognostic indicators to help
identify palliative phase of illness
Increase capacity in specialist
services by passing patients back to
GP’s and generalist community
teams to manage once their condition
has stabilised.
Ensure uptake of the Direct
Enhanced Service (DES) and
effective use of prognostic indicators
(e.g. GSFS and LCP.
This also needs a good IT structure to
support it. Can we link with TRAK and
other patient information systems to
achieve this?
Development of standard/
consistency in documentation rather
than the 100 or so versions currently
available! Ask professionals in
Appendix One
different settings what info they need
to support them in delivering palliative
care – when the patient moves
across settings e.g. what info do
District Nurses really need from the
hospital when a patient comes home?
What do hospital teams really need
when a patient is admitted?
• This needs a good IT structure to
support it. Can we link with TRAK and
other patient information systems to
achieve this?
• Developing links with the Joint
Improvement Team (J.I.T.).
15
Appendix One
Developing a Health Promoting Palliative Care Approach
What will we be doing in 5yrs
time?
How will we know we’ve
achieved this?
What barriers and obstacles
exist?
What solutions are there to
these challenges?
• We will have broken down taboos
about death, dying. Public and
professionals will be more
comfortable discussing palliative care,
end of life care, death and dying and
this will help to empower people to
make choices about their lives.
• Health promoting palliative care.
• There will be widespread education of
healthcare professionals and the
public on what palliative care is and
the role of the hospice.
• Death should become something that
is ordinary - we have sanitised so
much into "medical care" and this is
one of those items. Before the NHS
was set up people would generally
have been much more aware of
death, because it happened where life
was lived. I think we need to bring
back the everyday nature or
ordinariness of death. To that end we
should be pushing the promotion of
discussing death in subjects at school
and in education, as well as holding
the more media clever things like
promotion days. All of this will make
the opening of conversations in the
future easier;, it may not have benefits
in the next 5 years - but may do in the
next 20!
• People will have been diagnosed as
being in the palliative and / or end of
life phase. Recognised tools will be
being used.
• Demand for information and services
for all 3 trajectories (cancer, organ
failure and old/frail) will rise.
• We will see in their records/care plan,
what people want to happen
regarding preferred place of care,
preferred place of death and DNAR
status.
• A range of education will be available
and success of the Health Promoting
Palliative Care approach will be
demonstrable by the uptake of
education by all sectors.
• Gathering user views
• Attitudes will have changed
• More patients will have anticipatory
care plans
• Audit of notes. Identify conversations
held re advanced care planning
• Funding
• Willingness to change: ‘Staff attitude’,
wider population, diverse communities
• Respecting and managing views that
might differ both in public and
professional context.
• Lack of understanding and confidence
in responding to change in practice.
• Time constraints – teams already
working at/ beyond capacity
• Resistance to change?
• Definition of palliative care not helpful
for other agencies e.g. SW/Care
Homes
• Lack of patient and carer awareness
of concept of palliative care –
misperceptions about palliative care
being hospice and only for cancer.
• Build baseline information
• Link with other initiatives proactively
and to become the norm rather than
working in silos.
• Develop and implement a
Communication Strategy – lateral
thinking, pan Lothian, multi-agency
• Health Promoting Palliative Care to
educate the public and avoid
unrealistic expectations
• Public education about palliative care
services (stop being ‘precious’ about
it)
• Change of ethos and practice – out
patient clinics run by CNS
• Increase public awareness and
education about death and dying
• Linking nationally to disseminate the
message that dying is ordinary and
start the pubic conversation.
• Stop calling it palliative care and call
it death and dying.
• Encouraging people to talk about
death.
• SPC services to provide education to
care homes, primary care and other
teams
• Need to dispel myths / fears around
definition of palliative care
• Acceptance that admission to acute
hospitals will always remain
appropriate for some palliative
patients but pathways must be
embedded at all stages of
assessment to ensure patient is
16
Appendix One
identified as palliative and exploration
and awareness of patient goals and
choices impacts on care
17
Appendix One
Enabling Communication
What will we be doing in 5yrs
time?
How will we know we’ve
achieved this?
What barriers and obstacles
exist?
What solutions are there to
these challenges?
• IT that talks to each other.
• Communication between providers
will be greatly improved
• Standardised use of out of hours
notes.
• IT facilities in place to support transfer
of information between agencies and
especially including out of hours.
• Hospices should be linked to NHS.net
• Improved awareness among
generalists in the acute setting about
what palliative care is, definition of
palliative care etc
• Clear lines of communication between
services and a defined framework to
follow
• Improved interface between palliative
care and LTC work.
• Efficient processes of arranging care/
equipment/ medications to allow a
speedy response to changing
circumstances and wishes/ needs of
patient and carers
• We will see in their records/ care plan,
what people want to happen
regarding preferred place of care,
preferred place of death and DNAR
status.
• Palliative and end of life care will be
included in education & learning
opportunities as the norm. For
example it will be included in induction
and dementia training
• Measuring use of GSF throughout
community
• Measuring LCP use
• Use of Special Notes (EPCS)
• More patients will have anticipatory
care plans
• Electronic notes and resulting audits
• Better systems for sharing information
• Audit of notes. Identify conversations
held re advanced care planning
• Clear mechanisms for identification of
palliative care needs in LTC
programme implementation.
• Clarity of expectation for staff about
standards of communication/ sharing
of information with patients/ families.
• Clarity for patient/ families – of
expectations they can have of
services/ staff regarding information
and control around the patient’s care.
• Funding
• Staff to provide the services: hospital,
community (health & social care).
• Willingness to change: ‘Staff attitude’,
wider population, diverse communities
• Diverse communities, respecting and
managing views that might differ both
in public and professional context.
• Lack of understanding and confidence
in responding to change in practice.
• We don’t have a methodical approach
to say, what we need to do, how it will
get done, who will do it, who are our
partners and to developing ideas into
bids ready for submission for
development and improvement
monies or other sources of funding.
• Time constraints – teams already
working at/ beyond capacity
• Lack of cohesive IT systems
• Too much paperwork
• Lack of administrative support for
specialist teams. CNSs should not be
doing their own photocopying!!
• Different models of working within
Lothian alone
• Resistance to change?
• Definition of palliative care not helpful
for other agencies e.g. SW/Care
Homes
• Communication issues between OOH
services e.g. OOH DNs unable to
access special notes.
• Lack of communication of ACPs that
exist.
• Lothian Wide Palliative and End of
Life Care Strategy: to include: NHS
Lothian, regulated care services,
Local Authorities and voluntary sector
• Strategy to include: L.C.P In all care
settings, implementation, practice/
support.
• Gold Standards Framework: Surprise
Question
• Resolve complex care issues – fund
Cel 6 & NHS continuing care.
• Develop different models of care
across all care settings, Challenge
existing ways of working, Fully
integrated working.
• Link with other initiatives proactively
and to become the norm rather than
working in silos.
• Develop and implement a
Communication Strategy – lateral
thinking, pan Lothian, multi-agency
• Admin support for both specialist
teams and DNs
• Clear ‘trigger’ for referral to specialist
services
• Change of ethos and practice – out
patient clinics run by CNS
• Increasing use of technology – eg
Telecare
• More dynamic caseloads eg
increased rated of discharge/rereferral
• Respite care – tap in to existing SW
services/available places rather than
hospices
18
Appendix One
• Care providers excluded from
decision making re end of life care
needs and placement.
• It is challenging to perform holistic
assessments in the clinical time
available, which cover physical,
spiritual and emotional needs etc.
19
• Build on GSF – needs to have more
robust approach with some practices
• Suggested that there is a lead
palliative care person in each
ward/department.
• Create a directory of services which
could be placed online. This could be
used to raise awareness of palliative
and end of life care. A key
requirement is this is kept up to date.
• Awareness of tools available
including prognostic indicators to help
identify palliative phase of illness
• Promote the NHS Lothian Palliative
Care Guidelines on Lothian Intranet
and import it into IT systems for
Notes etc.
• Integrated IT systems to support
information transfer including out of
hours and social work and voluntary
sector
• MCN and SPC services to lead /
guide others by significant advertising
of available services by compiling a
local directory of resources
• Further advertising of LPCG in all
settings – many in group unaware of
guidelines / content
Appendix One
Changing Culture
What will we be doing in 5yrs
time?
How will we know we’ve
achieved this?
What barriers and obstacles
exist?
What solutions are there to
these challenges?
• Discussions with patients about end
of life care will be well done.
• There will be a greater emphasis on
anticipatory prescribing and planning
• There is a clear definition of palliative
care which focuses on the holistic
assessment and anticipatory planning
of patients’ care.
• Palliative care/end of life care will be
considered as “core business” by
health and social care providers.
• Care needs met by enhanced
generalist services who can contact
specialists appropriately when needed
• End of life conversations will be held
with patients and families by key
person involved in care.
• The principles of palliative care
associated with hospice care (patientcentred care/ involvement of family/
good symptom control/ focus on
quality of life and a dignified death)
will be embedded within all services
as integral part of the service provided
• Patients with long term conditions and
terminal illness will have ACP
exploration on their choices with
regard to place of care, resuscitation,
hospital admission etc.
• Improved awareness among
generalists in the acute setting about
what palliative care is, definition of
palliative care etc
• Clear identification of patients as
‘palliative’
• People will have been diagnosed as
being in the palliative and / or end of
life phase. Recognised tools will be
being used.
• Demand for information and services
for all 3 trajectories (cancer, organ
failure and old/frail) will rise.
• We will see in their records/care plan,
what people want to happen
regarding preferred place of care,
preferred place of death and DNAR
• Palliative and end of life care will be
included in education & learning
opportunities as the norm. For
example it will be included in
induction and dementia training.
• Measuring use of GSF throughout
community
• Measuring LCP use
• Gathering user views
• Attitudes will have changed
• More patients will have anticipatory
care plans
• Numbers of patients on palliative care
registers
• Audit of notes. Identify conversations
held re advanced care planning
• Increased use of SIGN 44 tool
• Clarity of expectation for staff about
standards of communication/ sharing
of information with patients/ families.
• Clarity for patient/ families – of
expectations they can have of
services/ staff regarding information
and control around the patient’s care.
• Funding
• Lots of experienced people are going
to retire soon how will we harness
their experience and transfer to
others?
• Willingness to change: ‘Staff attitude’,
wider population, diverse communities
• Lack of understanding and confidence
in responding to change in practice.
• We don’t have a methodical approach
to say: what we need to do; how it will
get done, who will do it, who are our
partners and developing ideas into
bids ready for submission for
development and improvement
monies or other sources of funding
• Time constraints – teams already
working at /beyond capacity
• Different models of working within
Lothian alone
• Resistance to change?
• Definition of palliative care not helpful
for other agencies e.g. SW/Care
Homes
• Lothian Wide Palliative and End of
Life Care Strategy: to include: NHS
Lothian, regulated care services,
Local Authorities and voluntary sector
• Strategy to include: L.C.P in all care
settings, implementation, practice/
support.
• Gold Standards Framework: Surprise
Question
• Resolve complex care issues – fund
Cel 6 & NHS continuing care.
• Develop and implement a
Communication Strategy – lateral
thinking, pan Lothian, multi-agency
• Health & Social Care – joint budget?
• Change of ethos and practice – out
patient clinics run by CNS
• More dynamic caseloads e.g
.increased rated of discharge/rereferral
• Respite care – tap in to existing SW
services/available places rather than
hospices
• Willingness to change already exists
(see how many attended event)
• Improve collaboration between
agencies at a Strategic level- e.g. no
one at a Senior Level from the City
Council in attendance
• Developing links with the Joint
Improvement Team (J.I.T.).
20
Appendix One
• Also – Clear protocols and
discussions around consent,
especially in relation to DNAR
including where the patient has a
cognitive impairment.
• Standard availability of joint training re
standards for palliative care/
communication with patients etc. to be
delivered across NHS Lothian;
Voluntary Organisations, and Local
Authority Social Care.
21
Appendix One
Providing Choice in Preferred Place of Care and Preferred Place of Death
What will we be doing in 5yrs
time?
How will we know we’ve
achieved this?
What barriers and obstacles
exist?
What solutions are there to
these challenges?
• Enabling people to die in their place of
choice
• Have services available for 20 -65 yr
old. Currently very difficult to access
respite other than in elderly care
• There should be choice around place
of care
• Most people will die at home or in the
community
• Services will be designed to support
dying at home not dying in hospital.
• People will be able to die where they
choose whilst maintaining the right to
change their mind.
• Patients will be able to die where they
want to.
• Good anticipatory care planning by
the multi-professional team which
includes adequately meeting patients’
and carers’ information and
psychological needs to support
informed choice regarding place of
care and death.
• Support choice i.e. avoiding
unnecessary hospital admissions/
facilitate effective discharges/ rapid
admission and smooth transition of
care to hospital where hospital is the
patient/ carer choice. Patients should
die in the setting of choice.
• Demand for information and services
for all 3 trajectories (cancer, organ
failure and old/frail) will rise.
• Named person will be identified in
records, with appropriate people
being involved to meet needs as
required.
• We will see in their records/care plan,
what people want to happen
regarding, preferred place of care,
preferred place of death and DNAR.
• Measuring LCP use
• Gathering user views
• There will be a key worker/case
manager appointed to support each
patient
• More people dying at home who
choose to die at home
• Increased achievement of PPC /
Death. Emphasis on preference
rather than reducing numbers dying in
hospital. Particularly non malignant
patients who may know acute teams
well through frequent admissions and
feel safe and desire to die in that
setting
• Preferred place of care and death
recorded and audited as an indicator
of choices supported/achieved.
• Enhanced use of self directed
support, supported by both health and
local authorities – to provide flexible
services.
• Access to bereavement services for
people with cognitive impairment.
• Funding
• Equipment: volume required will
increase and so will length of use,
need to be able to access required
equipment in all care settings in a
timeous manner
• Staff to provide the services: hospital,
community (health & social care).
• Lots of experienced people are going
to retire soon. How will we harness
their experience and transfer to
others?
• Lateness in providing palliative/end of
life diagnosis – often then too late to
provide care in “preferred place” etc
• Workforce and demographics:
increasing elderly population. Will
health and social care have enough
people with the right skills to meet the
needs of a growing and ageing
population with a wide range of needs
and higher expectations?
• Different models of working within
Lothian alone
• Public expectations unrealistic but
fostered by charity advertising
• Care Homes: staff turnover; DN input
or support variable; outcome
measures difficult to monitor;
educational needs of staff difficult and
expensive to meet
• Definition of palliative care not helpful
for other agencies e.g. SW/Care
Homes
• Capacity planning for care of the
• Lothian Wide Palliative and End of
Life Care Strategy: to include: NHS
Lothian, regulated care services,
Local Authorities and voluntary
sector.
• Strategy to include; L.C.P in all care
settings, implementation, practice/
support
• Gold Standards Framework: Surprise
Question
• Develop different models of care
across all care settings. Challenge
existing ways of working. Fully
integrated working.
• Build baseline information
• Link with other initiatives proactively
and to become the norm rather than
working in silos.
• Health & Social Care – joint budget?
• OOH medicationss – non-medical
prescribers/carer administration of
S/C medications
• Clear ‘trigger’ for referral to specialist
services
• Change of ethos and practice – out
patient clinics run by CNS
• Respite care – tap in to existing SW
services/available places rather than
hospices
• Suggested that there is a lead
palliative care person in each
ward/department.
22
Appendix One
• Increased roll out of Carers
Assessments – followed by support to
Carers.
•
•
•
•
•
•
•
23
elderly / care homes etc – if people
are unable to die at home and
hospice beds are only for complex
need, where will the other people die
well?
Lack of awareness of health care
professionals about concept of
palliative care
The hospice approach/ model may
not fit within the constraints of some
services and may need adapted- may
also be seen as unachievable and we
need to be very realistic given the
constraints on services and settings at
present and near future or we will fail
to get buy in and so fail to improve
current situation.
If we increase awareness of palliative
care- can we then meet the need
within existing resources?
Challenges of managing families’
expectations around acceptable place
of death
Evidence that LCP and GSF are still
not well utilised/ cascaded.
Decision making influenced by
assumptions re patient wishes /
service availabilities rather than facts.
Care providers excluded from
decision making re end of life care
needs and placement.
Appendix One
Increasing Access to Community Care.
What will we be doing in 5yrs
time?
How will we know we’ve
achieved this?
What barriers and obstacles
exist?
What solutions are there to
these challenges?
• Most care delivered in the community
• Resources shifted to community
• More input with community/ cottage
hospitals
• There will be 24/7 services for all who
need them, including a rapid response
nursing service at night
• Model of palliative care developed for
Community Hospitals.
• Develop specialist health and social
care teams to provide ongoing
support to patients in their own
homes.
• District Nurse role is recognised as
being central to palliative care.
• Overnight care at home will be more
readily available for patients at the
end of life with all conditions
• Efficient processes of arranging care/
equipment/ medications to allow a
speedy response to changing
circumstances and wishes/ needs of
patient and carer
• People will have been diagnosed as
being in the palliative and/ or end of
life stage of their illness. Recognised
tools will be being used across
community settings.
• Demand for information and services
for all 3 trajectories (cancer, organ
failure and old/frail) will rise.
• We will see in their records/care plan,
what people want to happen
regarding, preferred place of care,
preferred place of death and DNAR
(especially if we manage to achieve
PPC & PPD).
• Measuring use of GSFS throughout
community
• Measuring LCP use
• Use of Special Notes (EPCS)
• SPARRA data
• Direct entry to community hospitals
for generalist palliative care.
• Numbers of patients on palliative care
registers
• Audit of notes. Identify conversations
held re advanced care planning
• Increased numbers of discharges
from SPC units
• Developed and tested models of
service for non malignant groups and
implemented those that are effective.
• Greater number of people will be
recognised as palliative within general
services and so can then get access
to the care and support they need.
• Funding
• Equipment: volume required will
increase and so will length of use,
need to be able to access required
equipment in all care settings in a
timeous manner
• Staff to provide the services: hospital,
community (health & social care).
• Lots of experienced people are going
to retire soon. How will we harness
their experience and transfer to
others?
• Lateness in providing palliative/ end of
life diagnosis – often then too late to
provide care in “preferred place” etc
• Workforce and demographics:
increasing elderly population. Will
health and social care have enough
people with the right skills to meet the
needs of a growing and ageing
population with a wide range of needs
and higher expectations?
• Family networks are more
geographically spread: in the future
who will respond and provide care?
• Different models of working within
Lothian alone
• Public expectations unrealistic but
fostered by charity advertising
• Increasing numbers of patients
• Increasing elderly population
• Resistance to change?
• Care Homes: staff turnover; DN input
or support variable; outcome
• Lothian Wide Palliative and End of
Life Care Strategy: to include: NHS
Lothian, regulated care services,
Local Authorities and voluntary sector
• Review and plan staffing
requirements in all settings (health &
social care, multi-disciplinary).
Expectation is that will need more
staff but are aware might not be the
people out there who want to work in
health and social care.
• Develop different models of care
across all care settings. Challenge
existing ways of working. Fully
integrated working.
• Build baseline information
• Link with other initiatives proactively
and to become the norm rather than
working in silos.
• Health & Social Care – joint budget?
• OOH meds- nonmedical prescribers/
carer administration of S/C meds
• Clear trigger for referral to specialists
• Change of ethos and practice – out
patient clinics run by CNS
• More dynamic caseloads e.g.
increased rated of discharge/rereferral
• Respite care – tap in to existing SW
services/available places rather than
hospices
• Build on GSF – needs to have more
robust approach with some practices
• Increase capacity in specialist
24
Appendix One
•
•
•
•
•
•
•
Audit of patient pathways and
utilisation of services. Audit and
evaluation of palliative care will be a
quality requirement for all services
Audit of hospital admissions will
identify a reduced number of
inappropriate admissions
Proportion of deaths will shift from
hospital to other settings ?mortality
figures
GP registers will reflect greater
numbers of palliative care patients
using existing information re expected
numbers for comparison
Audit GP practices to look at % of
expected deaths with anticipatory
care plan/ on palliative care register
and % of those patients with
anticipatory prescribing.
Reduction in admissions
Fewer delayed discharges
Delivery of specific courses to up skill
staff supporting people with cognitive
impairment with palliative care needs.
•
•
•
•
•
•
•
•
•
measures difficult to monitor;
educational needs of staff difficult and
expensive to meet
Definition of palliative care not helpful
for other agencies e.g. SW/Care
Homes
Social carers and HCAs give family
carers respite but are unable to
administer prescribed medication for
symptom control if patient is unable.
Capacity planning for care of the
elderly / care homes etc – if people
are unable to die at home and
hospice beds are only for complex
need where will the other people die
well?
Evidence that LCP and GSF are still
not well utilised/ cascaded.
There is no consistent approach in
general practice and community
services to provide support to care
homes.
Risk that GP’s don’t know when to
place a patient onto a palliative care
register and how to build a care plan
once the patient is registered.
Decision making influenced by
assumptions re patient wishes /
service availabilities rather than facts.
Difficulty identifying when patient
becomes ‘palliative’
Moving away from curative intent –
difficulty for staff in letting go
•
•
•
•
•
•
•
•
•
•
•
25
services by passing patients back to
GP’s and generalist community
teams to manage once their condition
has stabilised.
Review the supply of equipment to
care homes where there is nursing
input (this relates to funding issues).
Review current organisation of care
to improve access to care 24/7 and
reduce hospital admission
Focus future investment on
programmes in community settings
Work needs done to address issues
in medication administration at home
as existing systems to support
patients who cannot take medications
by themselves and don’t have family
to administer are not adequate.
Access to care and equipment should
be based on need rather than the 6
month rule
Reinstate DN as core coordinator for
patient assessment and care
planning
24hour access to crisis nursing care
to prevent admission OOH
Flexibility of community nursing
response to attend wherever the
palliative patient is cared for e.g. care
home, community hospital etc
Develop flexibility around how direct
payments can be used
Sufficient funding and resources to
meet patient choice.
Use resources to improve
communication around discharge
planning- otherwise district nurses
and community teams are unaware of
interventions and discussions that
have taken place.
Appendix One
Providing Education and Training Opportunities
What will we be doing in 5yrs
time?
How will we know we’ve
achieved this?
What barriers and obstacles
exist?
What solutions are there to
these challenges?
• Staff will have received an appropriate
level of education and training
relevant to the area they work in. This
will enable staff to be confident and
competent in all aspects of the
delivery of care.
• There will be a rolling programme of
education for all staff at all grades
• Sufficient support and education
available to support generalist teams.
• At least two members of staff in every
care home/ hospital ward/ community
setting will have degree level
education in palliative care and be
supported to cascade knowledge and
skills within their unit and facilitate
links with specialists.
• Equity of access to education for
generalists to ensure upskilling in
basics of generalist palliative care
• There will be access to education for
all disciplines which enhances their
knowledge, skills and confidence in
the delivery of palliative care.
• All patients in the care home setting
will have a clear Anticipatory Care
Plan (ACP).
• People will have been diagnosed as
being in the palliative and / or end of
life phase. Recognised tools will be
being used.
• Palliative and end of life care will be
included in education & learning
opportunities as the norm. For
example it will be included in induction
and dementia training.
• Specialist courses associated with
organ failure and frail/older patients
• Gathering views of staff
• Joint training for health and social
care workers.
• Increased use of SIGN 44 tool
• Clear mechanisms for identification of
palliative care needs in LTC
programme implementation
• An accessible, well advertised
palliative care education programme
marketed to CHP general managers
and nursing (chief nurses) to allow
sponsorship and release of staff time
to attend.
• Evaluation of education and support
needs of professionals on an ongoing
basis
• Funding
• Education: need funding for staff to
attend education & backfill to cover
work place whilst they attend
• Willingness to change attitudes of
staff and wider population
• Diverse communities: respecting and
managing views that might differ both
in public and professional context.
• Lack of understanding and confidence
in responding to change in practice.
• Time constraints – teams already
working at/ beyond capacity
• Too much time taken up with
mandatory training, which could be
done less frequently
• Resistance to change?
• Definition of palliative care not helpful
for other agencies e.g. SW/Care
Homes
• There are fewer referrals for people
with non malignant disease- are
palliative care needs recognised for
non malignant patients?
• Lack of awareness of health care
professionals about concept of
palliative care
• Lothian Wide Palliative and End of
Life Care Strategy: to include: NHS
Lothian, regulated care services,
Local Authorities and voluntary
sector.
• Develop different models of care
across all care settings. Challenge
existing ways of working and fully
integrate existing working.
• Link with other initiatives proactively
and to become the norm rather than
working in silos.
• Develop and implement a
communication strategy – lateral
thinking, pan Lothian, multi-agency
• Health & Social Care – joint budget?
• Recognition of skills already available
• Ensure that education reflects non
malignant disease- e.g. DNAR, LCP
and GSFS.
• Suggested that there is a lead
palliative care in each ward/ dept
• Develop a shadowing project for
clinicians working in the acute sector
• Continue support for care homes.
• Education systems such as buddying/
mentorship re LCP introduction etc.
• Providing joint training
• Dissolve differences between social
care and health care in terms of
education and funding.
• Broaden education initiatives to
upskill generalists rapidly in various
settings (e.g. it took five years to train
enough nurses in Finlay House to
26
Appendix One
they didn’t have to transfer patients
because of need for a syringe driver)
27
Appendix One
Providing Better Support For Carers
What will we be doing in 5yrs
time?
How will we know we’ve
achieved this?
What barriers and obstacles
exist?
What solutions are there to
these challenges?
• There will be increased support and
care for carers.
• There will be better systems of carer
support
• Services will be able to respond
quickly (within hours) to changes in
patient’s clinical condition.
• More visible, accessible bereavement
support
• There will be greater recognition of
the needs of the carers for all
palliative patients- not just cancer-and
greater availability and access to
support. This includes bereavement
support for those that need it- at
present professionals do not have a
great understanding of what is
available and how to refer on. Is it the
case that if we improve palliative
care- fewer carers would experience
a difficult bereavement (due to issues
in palliative and end of life care which
stop them moving on to cope with
their grief) and require specific
support?
• Un-paid carers will receive more
effective support and their
contribution to care will be better
acknowledged
• Good anticipatory care planning by
the multi-professional team which
includes adequately meeting patients’
and carers’ information and
psychological needs to support
informed choice regarding place of
• Demand for information and services
for all 3 trajectories (cancer, organ
failure and old/frail) will rise.
• Named person will be identified in
records, with appropriate people
being involved to meet needs as
required.
• We will see in their records/care plan,
what people want to happen:
preferred place of care, preferred
place of death and DNAR status.
• Gathering user views
• Audit of notes. Identify conversations
held re advanced care planning
• Greater number of patients and
carers report needs met via forums/
patient stories/ other methods of
patient and carer involvement which
have been identified and implemented
• Reduced number of complaints
• Increase/decrease in access to
bereavement support.
• Greater confidence and reduction in
stress for un-paid carers
• Funding
• Equipment: volume required will
increase and so will length of use,
need to be able to access required
equipment in all care settings in a
timeous manner
• Staff to provide the services: hospital,
community (health & social care).
• Workforce and demographics:
increasing elderly population. Will
health and social care have enough
people with the right skills to meet the
needs of a growing and ageing
population with a wide range of needs
and higher expectations?
• Family networks are more
geographically spread: in the future
who will respond and provide care?
• Public expectations unrealistic but
fostered by charity advertising
• Increasing numbers of patients
• Increasing elderly population
• Lack of systematic support for un-paid
carers
• Difficulty identifying when patient
becomes ‘palliative’
• Moving away from curative intent –
difficulty for staff (and carers) in letting
go
• It is challenging to perform holistic
assessments in the clinical time
available, which cover physical,
spiritual and emotional needs etc.
• The usefulness of befrienders to
patients and families. They do not
need to be medically trained, but they
can offer support - especially to folk
who have "lost" their social life,
through being unwell, or caring for
someone who is unwell. This kind of
emotional support is very valuable,
and could be provided with the help
of volunteers organised by relevant
charities. These might include
charities like Help the Aged, or Age
Concern. We have heard how the
demographic age is increasing, and
how the majority of people requiring
palliative care are elderly, and that
more people will be retired and
looking to volunteer - but might not be
certain what to volunteer for - this
could be an answer!
• Build baseline information
• Link with other initiatives proactively
and to become the norm rather than
working in silos.
• Develop and implement a
Communication Strategy – lateral
thinking, pan Lothian, multi-agency
• Health & Social Care – joint budget?
• Patient/public involvement
• Creating a carer’s forum, developing
questionnaires and using patient
narratives
• Work with existing patient forums and
do some work around the challenges
of patient involvement- to ensure
28
Appendix One
care and death.
tokenism avoided. We may need to
be creative!
• Health and social care in partnership
with carer organisations to provide
training and educational opportunities
for un-paid carers.
• Need to build on patient stories
project and look at how information
given in one patient narrative re their
journey can be shared by all
Any other Notes?
L&DW – pie in the sky? Is it actually achievable with current resources?
Death isn’t sexy
Special notes are working well and linking care provided by NHS 24.
29
Appendix One
Appendix Two:
Notes of Paediatric
Palliative Care
30
Appendix Two
Choice
What will we be doing in 5yrs
time?
How will we know we’ve
achieved this?
What barriers and obstacles
exist?
What solutions are there to
these challenges?
• Families will have choice re place of
care and death for their child
(Hospice, Hospital, Home)
• Anticipatory Care Planning is part of
normal practice.
• We can provide choice around place
of death.
• Providing facilities for adolescents
and young adults.
• There will access to 24/7 palliative
and symptom control care in all
settings of family/child’s choice
• Developing models of care for
children and young people
• Appropriate places of care for patients
will be identified including younger
adults (20-50’s).
• Annual Audit using ACT Service and
Parent audit tools will identify families
now have choice.
• Expansion of children’s community
nursing team, symptom control team,
oncology nurse outreach team
services; to 24/7 provision for end of
life care.
• There will be clear recording of when
discussions re choice were
undertaken and documented within
individualised care plan and on core
database.
• Utilisation of Parent Stories to capture
this information
• Range of services available to
patients and families.
• There will be an identified resource
that can be put into place to provide
for 24/7 palliative and symptom
control advice and terminal care for
families
• Specialist bereavement suites will be
available for families to use within the
hospital environment
• Clear process for introduction of
hospice services for families giving
them choice to use this service
• Clear identification with parents/child
re choice of end of life care and that
this is reflected in outcome.
• Lack of awareness of available audit
tools.
• No real choice as no out of hours
community based provision at present
for paediatric end of life care.
• Individuals contact ward for advice
out of hours or specialist nurses who
offer this on an informal basis
• No core training available to develop
practice and competence in paediatric
palliative care / end of life care.
• Limited skilled staff to offer this choice
of support of place of care.
• No regional planning re paediatric
palliative care so no ownership at
strategic level
• No strategy or business plan in place
locally.
• There are low numbers of children
requiring palliative care, this means
it’s difficult to build capacity and
maintain clinical skills across a
number of settings.
• There is a lack of existing
infrastructure for paediatric palliative
care across community, acute and
tertiary centres.
• No specialist area for child to die in
hospital setting
• Professionals reluctant to discuss role
of hospice at early stage or at
diagnosis of palliation.
• The number of children requiring
palliative care services is extremely
small. On average each GP will deal
• Expansion of children’s community
nursing team, symptom control team,
oncology nurse outreach team
services; to 24/7 provision for end of
life care at home.
• Develop process for early
introduction of choice and facilitated
introduction to hospice services.
• Expand Regional palliative care
group to actively cover paediatrics.
• Expand the palliative care MCN to
actively include paediatrics in its
work.
• Ensure incorporation of paediatric
palliative care into the NHS Lothian
palliative care strategy with clear links
re ACT guidance re gold practice
standards.
• Raise awareness of audit tools
through training
• Develop paediatric strategy
• Look at internal opportunities for
rotation of staff within specialist areas
to develop core skills
• Centrally agree ‘On Call’ payments
and develop an on call strategy for
end of life care at home
• Build on the core components of
Living and Dying Well as core service
provision for children services.
• Identification of key worker for each
child
• Palliative Care Business plan to
develop 24/7 end of life provision
across all services is developed and
31
Appendix Two
with 1.5 children in their entire career.
These small numbers mean that
achieving critical mass for the
provision of services is difficult
• Every family is very different and has
different needs. Therefore services
need to be low volume and very
tailored. Time is required to build trust
with families and make people feel
comfortable.
32
submitted (identify if this can be
shared across Regional areas to gain
extra funding)
• Development and appointment of
clinical lead for palliative care in
children across the Region
• Develop and deliver ‘On Call’
palliative care advice service within
current service provision (the
numbers are relatively small)
Appendix Two
Coordination of Care
What will we be doing in 5yrs
time?
How will we know we’ve
achieved this?
What barriers and obstacles
exist?
What solutions are there to
these challenges?
• There will be a clear agreed definition
of paediatric palliative care across
Lothian and process for identifying
children & young people with
palliative care needs.
• All participants hope that in 5 years
time, that systems are in place to
support better identification of
individual patients and patient groups
• Agreed definition within core
documents re palliative care in
paediatrics
• Lothian Core Database for collection
of paediatric palliative care data
• Agreed process for data entry and
update
• Capture data on sudden deaths via
A&E etc
• Participation in UK wide paediatric
palliative care registers.
• General public knowledge and
experience of paediatric palliative
care
• Expectations vary
• No clarity re when a child’s condition
becomes palliative and service can be
provided
• No awareness /mapping undertaken
to identify number of children with
palliative conditions – no database to
collate this data
• No identified resource to fund this
work
• No perceived need to provide this
resource
• Can the SNS (Support Needs
System) currently used in complex
care be adapted to also collate
palliative data?
• ACT are in process of completing a
Delphi study to finally agree definition
of palliative care – implement this
work into local policy as core
definition
• Education to GP’s to add children
identified as palliative to the palliative
care register
• Develop a communication process to
share this information across
professionals/agencies so this can
happen
• Identify key individual to maintain and
update database
• Review local sudden death policy and
ensure bereavement support
incorporated within this.
• There will be an identified
assessment tool available for
professionals to utilise to identify and
plan for palliative and end of life care
for child/ young person. This tool will
be updated annually and used for
those young adults moving into adult
services
• The systems for earlier identification
of palliative care needs will enable
earlier identification of palliative care
needs. This will enable
communication and support for the
• A Core Assessment Tool will be
agreed on and utilised within services
and all users aware of same.
• Annual audit of tool and outcomes of
assessment undertaken
• Training across all agencies re use of
tool and assessment
• Poor skills of staff to undertake
assessment
• There are a range of assessment
tools - staff may feel this is just
another piece of time consuming work
• Access to training – availability and
being released from place of work
• Time to undertake multi-professional
assessment
• Lack of audit skills / support resource.
• Audit and user involvement not built
into local policy or practice for this
area
• Can we utilise the core assessment
tools already in place – Section 23 /
Lothian Exceptional Needs Tool for
care packages to identify service
need?
• Look at existing training programmes
for these assessment tools and
cascade out.
• Look for opportunities to learn from
others to undertake assessment.
• Utilise the ACT Self Assessment
Tools to audit current practice.
• Ensure all children are referred into
33
Appendix Two
family.
Care Coordination Team around child
and allocated a key worker to ensure
multiagency/ multi-professional
support around care plan
• Transition via an integrated service
will take place to support families and
child moving from treatment to
palliative care and from child to adult
services utilising key worker and Care
Coordination / Team Around the
Child
• Clear interagency process for
identifying children with palliative
care.
• Each child will have an identified Key
Worker
• Each child will have an individualised
and interagency care plan with
parallel planning re end of life care
• The ACT Transition pathway will be
implemented within local practice and
identified as the gold standard
framework.
• Audit of the ACT Transition self
assessment tool will be done annually
to identify gaps in provision and
service planning
• There are health and SW transition
teams but they are not based together
and have different remits and referral
criteria.
• No one core interagency plan utilised
• No awareness of the ACT Transition
Pathway
• No current audit or evaluation of
transition services at present re gaps
and provision
• No clear commitment to transition
• Hold a local interagency Transition
workshop day covering all agencies
to look at how to move this forward.
• Present the ACT Transition tool and
identify gaps in current service
provision in line with this document
• Work with adult teams to identify key
children who will be transferring over
to their services and not just waiting
th
till near their 16 birthday.
• Ensure all children with palliative care
needs have an identified Keyworker
and individualised interagency plan
that incorporates transition.
• It would be helpful to start by
developing knowledge and
information by completing a mapping
exercise to look at the number of
children dying, at a Lothian or
possibly even a Scotland level.
Through analysis of a group of
paediatric patients, determine if
deaths were expected and if so, what
was put in place to support these.
• NHS Lothian will implement the ACT
care pathway standard. This ensures
in place that both interagency and
inter-professional delivery and will
work across tertiary, primary care and
other specialist services
• Clear pathways to follow – whether
adult or children’s services
• The distinct needs of children,
teenagers and young adults will be
widely recognised.
• End of Life Care Policy developed will
reference the ACT integrated care
pathway as gold standard framework
for end of life care
• Implement Liverpool Care Pathway
for children once developed to match
adult services
• Clinicians should be able to
confidently use DNAR orders with
patients.
• Professionals unaware of ACT
Pathway
• Reticent to implement this pathway.
• Lack of knowledge / skills to identify
end of life / change to palliative care
to end of life care
• Development of anticipatory care
plans
• Develop core standard End of Life
Care plan based on the ACT
documents for professionals to
complete.
34
Appendix Two
• Telemedicine can be used to reduce
contact at tertiary centres and more
care provided ‘closer to home’
• Clinicians caring for children with
palliative and symptom control needs
can access advice and guidance to
support families to remain locally
35
• No co-ordinated plan for this to
happen in paediatrics
• Families may wish to bring their child
back to hospital (which is current
practice)
• Do local GP’s have skills to identify
concerns and carry out advice
gained?
• Build on the existing development of
Palliative care network conferencing
at Yorkhill in Glasgow.
• Get formal link with RHSC and look at
how we advertise this for local
practitioners and get them linked into
this network as we transfer children
back into local areas within region
and nationally.
Appendix Two
Service Development
What will we be doing in 5yrs
time?
How will we know we’ve
achieved this?
What barriers and obstacles
exist?
What solutions are there to
these challenges?
• Service development will be in line
with national policy / evidenced based
frameworks for paediatric palliative
care
• Built in process for peer group review
of services.
• Service operational policies and
strategy will include reference to: ’A
Guide to the Development of
Children’s Palliative Care Services’
nd
2 ed (2003)ACT/RCPCH,
‘Integrated Multi-Agency Care
Pathways for children with life
threatening and life limiting conditions’
ACT (2004) and ‘The Transition Care
pathway’ ACT (2008)
• Services will be measured by ACT
Self Assessment Tools for
Care/Transition/ Parent Involvement
• Services will be reviewed annually by
peer group review
• Professionals / Health Boards not
aware of national documentation re
best practice that exist
• No government backing to look
specifically at paediatric palliative
care / adult focus has distracted from
this
• Clinicians struggle with the concepts
and can be difficult to engage
• There is a real danger that we can
replicate existing work and ‘re-invent
wheels’ as we haven’t got good
systems in place to support sharing of
best practice.
• Robust links with the Scottish
Paediatric Palliative Care Network –
cascade work out across work in
Lothian
• Key membership and links with MCN
and Regional groups for adult
palliative care to incorporate
paediatrics within their work
• Circulate key documents within
Lothian for implementation into local
policy/practice
• Look at developing tool for peer
group assessment from the ACT self
assessment templates / Living &
Dying Action plan
• Build links with Scottish Children’s
and Young People’s Palliative Care
Network (SCYPPCN).
• NHS Quality Improvement Scotland
will develop national practice
guidelines for paediatric palliative
care practice at all levels of care
provision based on the RCN
competencies for paediatric palliative
care for nurses.
• NHS/QIS will develop competencies
for nursing practice in paediatric
palliative care
• National document will be produced
• Training and Education provision
delivered and accessible to all levels
of care
• NHS QIS have no plans to undertake
any work within paediatric palliative
care as the resources they have been
provided with have come with the
adult palliative care document Living
and Dying Well
• Link in with Living & Dying Well work
and challenge the remit of any
planned training delivery to include
paediatrics.
• It would be helpful to start by
developing knowledge and
information by completing a mapping
exercise to look at the number of
children dying, at a Lothian or
possibly even a Scotland level.
Through analysis of a group of
paediatric patients, determine if
deaths were expected and if so, what
was put in place to support these?
36
Appendix Two
• A dedicated paediatric palliative care
service will be developed which has
one contact number and a multi
professional team working together to
provide this service
• Specialist advice and support will be
available 24/7.
• One point of contact for enquiries for
professionals / parents for paediatric
palliative care services. Provision of
a dedicated core team to deliver this
available.
37
• Lack of resources to extend service to
24/7 provision
• No joint working policy / clear
guidance re working together for
paediatric end of life / palliative care
needs
• Lack of suitable skilled staff
• Clinicians struggle with the concepts
and can be difficult to engage
• The number of children requiring
palliative care services is extremely
small. On average each GP will deal
with 1.5 children in there entire
career. These small numbers mean
that achieving critical mass for the
provision of services is difficult
• Currently there is a lack of readily
available data to inform service
planning.
• Co-ordinated business planning to
look at how to extend out of hours
provision for end of life care and
integrate teams.
• Co-location of Community Nursing
Teams / specialist nurse services
within new hospital ELSE bring under
one manager to facilitate service
support/development and business
planning
• Develop rotation post to allow staff to
rotate into specialist areas.
• Join up bereavement services for
parents and families, e.g. services for
neonatal deaths and sudden deaths.
Appendix Two
Education and Training
What will we be doing in 5yrs
time?
How will we know we’ve
achieved this?
What barriers and obstacles
exist?
What solutions are there to
these challenges?
• There will be robust training & skills
development programme available for
all levels of professionals around the
aspects and delivery of paediatric
palliative care
• Training will be freely available
• Staff will have access to a range of
general and specialist paediatric
palliative care training
• Workforce development will look at
how to support staff to access this
• Training will be identified within staff
personal development plans to
develop the nursing workforce and
evidence this has been undertaken
identified.
• Annual patient satisfaction survey
questionnaire will be developed to
ensure this training is impacting and
improving patient experience.
• Lack of availability of training
• Staffing levels – difficult to release
staff
• Lack of funding – core budgets for
staff training limited and development
of training programmes.
• Training adult focused so not sure if
paediatric staff should attend? Would
it meet their needs?
• Families can find the experience of
losing a child very difficult and not
want to provide feedback.
• Clinicians struggle with the concepts
and can be difficult to engage
• Education opportunities for palliative
care (both adult and paediatric) are
limited under the new undergraduate
medical curriculum.
• Development of rotation post to
support movement of staff within
specialist areas.
• Integrate palliative nurse specialist
within pain control team (already
good links with oncology)
• Develop internal courses already in
existence to ensure they meet the
needs of all professionals across
agencies.
• Develop specific specialist courses
for paediatrics for key professionals
• Look for joint funding across SEAT
planning group to share funding for
specialist courses in paediatric
palliative care so we standardise
training across region.
• Following a needs assessment,
develop education for clinicians to
improve skills and confidence. In the
longer term this will support and
empower clinicians to deliver care
• There will be a core policy to support
the regular supervision of staff
working in this area. Debriefing
following all child deaths
• There will be evidence of reduced
sickness/absence / good staff
retention in area.
• Staff are proactive members of
service development and planning.
• Policy developed across NHS Lothian
• No current NHS Lothian supervision
policy
• No perceived need, so no policy or
practice in place.
• Supervision not embedded into local
practice across agencies
• Time and availability to bring staff
together to debrief / learn through
reflection of practice
• Develop or contribute to development
of supervision policy.
• Ensure protected time for all staff to
access this who are working with
palliative clients
• Develop a Child Death Review Panel
that meets monthly to review and
look at any cases that staff wish to
review / of concern so we can learn
from our experiences
38
Appendix Two
Support for Families
What will we be doing in 5yrs
time?
How will we know we’ve
achieved this?
What barriers and obstacles
exist?
What solutions are there to
these challenges?
• Bereavement support: will be
accessible, available and timely as
and when needed.
• For children using specialist tertiary
centres living out with Lothian there
will be equal access to bereavement
services within their own areas.
• Bereavement care will be available to
the whole family.
• Annual Audit using the ACT Parent
self assessment tool re service
provision
• Use of Parent Stories
• Evaluation of Family Health Statistics
– to identify any significant changes in
this client group / family i.e. reduction
in GP attendance/ sickness etc
• Proactive Paediatric Bereavement
Group leading on this area and its
development reflected in its minutes /
action plan/ responsibility clear.
• Families shouldn’t feel let down- this
should come through from reduced
complaints and feedback from
families using services.
• Not seen as a priority within health
care provision
• Limited access of specialist provision
• Long waiting lists for counselling
• Inconsistent provision across health
boards – how to provide to those
families who have used the tertiary
centre and have now returned home
out with Lothian
• Lack of skilled practitioners to work
across this specialist area i.e. to meet
the needs of parent/child/ husband/
wife/sibling etc
• Every family is very different and has
different needs. Therefore services
need to be low volume and very
tailored. Time is required to build trust
with families and make people feel
comfortable.
• Re-establish the Paediatric
Bereavement group and clearly
identify budget, accountability and
authority of the work of this group
• Cleary identify what bereavement
support is currently available and
develop information leaflet for
families.
• Undertake parent stories / ACT Audit
tool to capture feedback from families
re experience
• Highlight need at SEAT re regional
commitment to development of
bereavement support for families
• Identify outcome of CHAS review of
their Bereavement service and how
this may impact on this. (ongoing)
• There will be information in
parent/child friendly formats to help
them understand the concept of
palliative care
• There is available access in varying
format information for parents / child
re what paediatric palliative care is
and who provides this and where to
access support.
• Campaign carried out across all
media tools to highlight that palliative
care is not just about dying but quality
of life and living.
• Poor clarity re diagnosis of palliative
status for children with chronic long
term conditions
• Where do you start?
• Public just think palliative care is only
about dying/ death
• Nothing available at the moment.
• Lack of confidence in professionals re
when to give such information to
families/children
• Implement outcome of the ACT
Delphi study which will bring final
agreement re palliative care across
conditions.
• Look at what’s currently available in
adult services and children’s
hospices and what can be used for
families now.
• Identify if there is current training re
this and incorporate paediatric
themes
• Work directly with children and
families as they progress through
services
39
Appendix Two
• Families will have access to
consistent financial benefits across all
age ranges. (Access to funding within
paediatrics and adults is different).
• NHS Lothian will develop joint held
core budget to support transition from
children to adult services.
• There will be equity of care provision
hours within child / adult services
• There will be an identified Social
Worker as core member of the
palliative care team to ensure families
are prepared financially for the
change from child to adult services
and supported to access all available
benefits.
• There will be social worker to ensure
families are made aware of all
benefits / entitlements for caring for
their child/young person (Currently
only available in Oncology)
• Parents not actively given information
about benefits as part of in built
process out with oncology setting.
• Discrepancy exits at government level
re benefits for children and adults.
• Discrepancy exists re care package
funding between adults and
paediatrics
• No transition jointly held funds.
• Identification of named SW in each
CHP/LHP as point of referral for all
children identified as palliative to
ensure they are accessing all
available support and resources.
• Use patients’ stories / Vol untary
organisation research to capture
families’ experiences in this area.
• RHSC will employ an identified SW to
support palliative patients and
support transition or identify an
individual within the RHSC SW team
to take this on. RHSC and SW dept
would have to look at this locally.
Other Points
• How do we link with the GP palliative care register?
• How do we link work with the e-palliative care summary work that is currently underway in adults?
• Is there future planning re verification of end of life to extend in paediatric practice within acute/community setting?
• Expectations of families vary – specialist teams ‘letting go’ of clients and how this is done
• Do Not Actively Resuscitate (DNAR) policy needs developing in paediatrics
• Whilst it was acknowledged that there are many challenges, all members of the group were enthusiastic and keen to support the development of services. There
was widespread recognition that we need to work outside of NHS Lothian boundaries to create the critical mass to run sustainable services.
• People find talking about death difficult and especially so when children are involved. This makes talking about children’s palliative care very difficult.
• There is recognition that we don’t currently have all the answers; however it would be helpful to create the time and space to further scope some of these issues
and try to create solutions
• Children born with Down’s Syndrome have a 10 – 30 times increased risk of developing childhood leukaemia – therefore the need for paediatric palliative care
services to have the associated skills of supporting these children and families.
40
Appendix Three:
Delegates
41
Name
Ali Barclay
Alison Bramley
Andrea Ness
Andrea Ritchie
Andrew Elder
Angela McLean
Ann Thomson
Anne Lyall
Anne Spiers
Anne Willis
Audrey Gardiner
Carol Chalmers
Caroline Lawrie
Caroline Myles
Colette Lamb
Craig Beveridge
Daphne Chad
David Oxenham
Dawn Ferguson
Debbie Crawford
Dorothy McArthur
Dot Partington
Dr. Beate Riedel
Dr. Bill O’Neill
Dr. Duncan Brown
Dr. Mandy Allison
Dr. Michael Brown
Dr. Patrick Carragher
Dr. Tom Marshall
Emma Bennett
Evelyn Howie
Fiona Colville
Fiona Harkness
Fiona Wann
Frances Myles
Title
Clinical Specialist O.T.
Lothian MCN Manager for CHD, Stroke & Respiratory MCNs
Heart Failure Liaison Nurse
Occupational Therapy
Consultant Acute Elderly Medicine
Unit Manager: Eskgreen Residential Unit for Older People
Clinical Specialist Physiotherapist
Team Manager/District Nursing Midlothian CHP
Senior Practitioner WLC – Practice Team Adults
Hospice Manager, Marie Curie Hospice
Macmillan Nurse
Service Manager for the Disabled
Clinical Nurse Manager, Mental Health/Elderly Continuing Care
Clinical Services Manager, Community Nursing
Respiratory Nurse Specialist
Assistant General Manager ECHP – NW and SW LHPs
P.O.O.N. RHSC
Consultant in Palliative Care
Staff Nurse, RIE
Palliative Care Clinical Nurse Specialist, Royal Infirmary Edinburgh
Principal Pharmacist Palliative Care
Clinical Nurse Specialist/Manager
Clinical Psychologist
GP Lead, Cancer & Palliative Care, NHS Lothian, Chair, Scottish Primary Care Cancer Group
Consultant in Palliative Medicine
General Practitioner
Nurse Consultant
Medical Director, Children’s Hospice Association Scotland
Consultant Paediatrician
Lead Breast Clinical Nurse Specialist
Senior Clinical Nurse
Marie Curie Nursing Service Manager
MacMillan Nurse
Senior Physiotherapist and Lymphoedema Practitioner
Clinical Nurse Manager
42
Garry Todd
George Lee
Gillian Knowles
Gillian Sidey
Helen Lillie
Hilary Provan
Isabel Dosser
Jane Greenacre
Jane Marryat
Jayne Scotland
Jean Little
Jenny Doig
Jill Derby
John Webster
Joyce Livingston
Juliet Spiller
Karen McLean
Kate Mitchell
Katharine Spence
Kathryn Brechin
Katie McWilliam
Kay Simpson
Laura Groom
Lesley Lofthouse
Leslie Chapman
Linda Buchanan
Liz Baikie
Liz Barker
Liz Mcfarlane
Lorraine Wilson
Lynda Cameron
Lynn Bennett
Mairead Hughes
Mairi Johnston
Margaret Colquhoun
Margaret F. Dunbar
Margaret Johnston
Principal Pharmacist
Manager, Marionville Court Care Home
Nurse Consultant for Cancer Care
Respiratory Nurse
Manager, Marionville Court Care Home
Napier University Programme Leader: Palliative care
VOCAL’s Training Officer
National Training Development Officer
Nurse Consultant Paediatric Palliative Care
District Nurse
Macmillan Cancer & Palliative Care Educator
Service Development Officer , West Lothian CHCP
Renal Conservative Management Nurse
Colo-rectal Nurse Specialist
Consultant in Palliative Medicine
Staff Nurse
Family Support Nurse
Senior Nurse, Day Services
Clinical Nurse Manager
Strategic Programme Manager (Older People)
Group Nursing Manager, Peacock Medicare Limited
Clinical Specialist Physiotherapist
Support Nurse with the Community Equipment Service
Student District Nurse
Pain Management Nurse Specialist
Consultant Clinical Psychologist
Senior Nurse Specialist Community Palliative Care
Community Palliative Care CNS
Team Leader
West Lothian Palliative Care Pharmacist
Development Manager, West Lothian CHCP
Specialist Nurse Practitioner, in Palliative Care
Senior Nurse Lecturer
Nursing & Administrative Director
Unit Manager, Silverlea Care Home
43
Margaret Williamson
Mary McLoughlin
Mary Parkhouse
Mary Rose
Maureen Theurer
Moira McRae
Morag McMillan
Ninian Hewitt
Patricia Black
Patricia Jackson
Peter McLoughlin
Prof Alex McMahon
Prof Scott A. Murray
Revd. Carrie Upton
Revd. Tom Gordon
Rhona Moyes
Robert Pottage
Rose Pritchard
Rosemary Cairns
Sally Thompson
Sarah Gold
Scott Taylor
Sheila Cowe
Shirley Fife
Susan Bain
Susan Scott
Suzanne Crawford
Sylvia McGowan
Thomas McCarthy
Veronica Warrington
Wendy Arthur
Yvonne Whitehouse
District Nurse
District Nursing Sister
Head CPPD
Consultant in Paediatric Anaesthesia & Pain Management
Senior Charge Nurse
Learning & Development Adviser Health & Social Care
CNS Palliative Care
Respiratory MCN
Palliative Care CNS
Consultant Paediatrician
Strategic Programme Manager, Cancer, Diagnostics & Palliative Care
Deputy Director, SP&MD
St. Columba’s Hospice Chair of Primary Palliative Care
Hospital Chaplain
Chaplain, Marie Curie Hospice
Community Palliative Care CNS
Nurse, Renal Department
Area Nurse Manager
Clinical Nurse Specialist
Community Children’s Nurse
Community MUST Dietitian
Manager- Older People
Day Services Manager
Lead Cancer & Palliative Nurse
Deputy Charge Nurse
CNS Community Palliative Care
Charge Nurse
Hospital Discharge Project Manager
Assistant Programme Manager
Information & Advocacy Worker at SNIP
Senior Social Work Practitioner
Senior Physiotherapist
44