2021 Scottish Parliament Manifesto - Dying, death and bereavement: Getting it right for all of Scotland - Marie Curie

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2021 Scottish Parliament Manifesto - Dying, death and bereavement: Getting it right for all of Scotland - Marie Curie
2021 Scottish
Parliament Manifesto
Dying, death and bereavement: Getting it right for all of Scotland
2021 Scottish Parliament Manifesto - Dying, death and bereavement: Getting it right for all of Scotland - Marie Curie
2021 Scottish Parliament Manifesto

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2021 Scottish Parliament Manifesto - Dying, death and bereavement: Getting it right for all of Scotland - Marie Curie
2021 Scottish Parliament Manifesto

Contents
Introduction                                                      4

What is palliative care?                                          6

Health inequities and inequalities in palliative care             9

Community support networks                                       10

Place of care and death                                          13

Social care                                                      15

Supporting digital                                               17

Family (informal) carer support                                  19

Grief and bereavement                                            20

Education and training                                           21

Welfare and benefits                                             22

References                                                       26

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2021 Scottish Parliament Manifesto - Dying, death and bereavement: Getting it right for all of Scotland - Marie Curie
2021 Scottish Parliament Manifesto

                  Introduction

                 I
                     n Scotland in 2019/20, more than 58,100      The coronavirus pandemic has shown
                     people died¹. Around 90% of those            the distressing impact dying, death and
                     (52,000) had a palliative care need in the   bereavement can have on anyone at any
                  final years, months, weeks, days and hours      time. It has intensified the complexities
                  of their life. Scotland’s ageing population     associated with terminal illness for patients,
                  means more and more people will be dying        families and carers, which will affect many
                  in the years to come, with Marie Curie          people for years to come. The need to
                  research suggesting up to 10,000 more           identify people with a terminal illness who
                  people dying every year with palliative care    would benefit from palliative support as
                  needs by 20402. More and more of those          early as possible has never been greater.
                  people will be dying in the community, with     This will ensure the best possible quality
                  nearly two-thirds of all deaths taking place    of life.
                  in care homes or people’s own homes3.           Everyone will be affected by dying, death
                  Many of those living with a terminal illness    and bereavement at some stage of their
                  will be supported by families, loved ones       lives. Those who are dying have the right
                  and neighbours, who provide them with           to an end of life experience which reflects
                  informal family care. There is a growing        what’s most important to them.
                  need to support these carers throughout         Marie Curie is here for people living with
                  their caring role and beyond, especially        any terminal illness, their families and
                  when the person being cared for has             carers. We offer expert care, guidance and
                  died. Every year, it can be estimated that      support to help them make the most of the
                  around 40,000-50,000 carers in Scotland         time they have left.
                  are bereaved4.

                       In Scotland in 2019/20                           Our fundraising, care and
                                                                        support services:
                                                                           2   hospices
                                                                           2   research leads posts
                                      We cared for 8,534
                                                                          15   active research projects
                                      people with a terminal
                                                                          31   local authorities supported
                                      illness
                                                                               by our nursing service
                                                                          32   stores
                                                                         100   fundraising groups
                                     We need to raise £250,000           175   people supported by our
                                     a week to support our                     volunteer Helper services
                                     services in Scotland              1,571   volunteers
                                                                         1/3   of care and support is
                                                                               provided by gifts in Wills.

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2021 Scottish Parliament Manifesto - Dying, death and bereavement: Getting it right for all of Scotland - Marie Curie
2021 Scottish Parliament Manifesto

Our vision 2021-2025
We believe the next Scottish Government must work towards a Scotland where
dying, death and bereavement is talked about openly, where people can plan and
discuss their care and preferences, and everyone affected has the best possible end
of life experience which reflects what is most important to them.

   Asks for the next Scottish                 b. Establishes a new national Palliative
   Government                                 and End of Life Care Network linking
                                              key stakeholders with NHS Boards and
   Marie Curie is calling for the next        Integration Authorities to identify
   Scottish Government to support dying,      gaps in care, share good practice and
   death and bereavement in Scotland          support innovation and learning.
   through three key asks:
                                              c. Works with all providers including
   1. Appoint a new National Clinical         the NHS, social care, the independent
   Lead for Palliative and End of Life Care   and third sectors to ensure everyone
   for Scotland, who will be responsible      gets the care they need and is working
   for overseeing a new national strategy     to end inequities and inequality.
   that delivers place-based palliative
                                              d. Empowers and equips communities
   care in partnership with national
                                              to care for and support those facing
   and local stakeholders across public,
                                              dying, death and bereavement to
   private and third sectors.
                                              experience as high a quality of life
   2. Introduce a national strategy           as possible.
   for palliative and end of life care
                                              3. Ensure all family and other carers
   taking a whole-system, public health
                                              get the support they need as they
   approach that:
                                              look after the person they are caring
   a. Sets out vision for care in all         for, and appropriate bereavement
   settings including hospitals, hospices,    and financial support when that
   care homes and people’s own homes.         person dies.

Dying, death and bereavement impacts
everyone and every part of our life. All
public policy including health and social
care, welfare, housing, education and
technology will interact with people living
with a terminal illness or when someone
is grieving.
A whole-system approach to terminal
illness should be adopted both nationally
                                                                                           Kieran Dodds/Marie Curie

and locally from Scottish Parliament and
Government to NHS Boards, and Health
and Social Care Partnerships, Local
Government and Community Councils.

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2021 Scottish Parliament Manifesto - Dying, death and bereavement: Getting it right for all of Scotland - Marie Curie
2021 Scottish Parliament Manifesto

                  What is palliative care?

                  W                                                Dying in Scotland today
                            e believe someone is terminally
                            ill if they are diagnosed with a
                            condition that will lead to their      In 2018, more than 16,500 people died
                  death. Depending on the condition this           of cancer, more than 14,700 died of
                  could be years, months, weeks or days.           circulatory disease, more than 7,000 died
                                                                   of respiratory disease and more than 4,000
                  Those who are terminally ill can be              died of dementia or Alzheimer’s6.
                  supported with a palliative care approach.
                  The aim of palliative care is to support a       Figures below show where people died:
                  person to have a good quality of life – this
                  includes being as well and active as possible                                    6% of people
                                                                            6%
                  in the time they have left. It can involve:                                      died in hospice
                                                                                     25%
                  • managing physical symptoms such                  28%                           25% of people
                                                                                                   died at home
                    as pain
                                                                                                   48% of people
                  • emotional, spiritual and psychological
                                                                                                   died in hospital
                    support
                                                                                                   21 % of people
                  • social care, including help with things like              48%                  died in a care
                    washing, dressing or eating                                                    home
                  • support for family and friends.
                  A person can receive palliative care at any      There are still misconceptions about
                  stage of their illness. It can be delivered      palliative care, with it often being
                  alongside treatments, therapies and              associated with people dying of cancer,
                  medicines aimed at controlling the illness,      but it supports a person with any terminal
                  such as chemotherapy or radiotherapy.            condition including dementia, frailty, heart
                  Palliative care can be provided in different     disease. Many people will die with multiple
                  places, including in a person’s home, in         health conditionsii.
                  hospital, in a care home or nursing home,        Currently, not everyone gets the support
                  and in a hospice. It can be delivered            they need – one third of Scots with terminal
                  by general health and social care                conditions die without an anticipatory
                  professionals, such as GPs, District Nurses      care plan in place, meaning they could be
                  and social care teams, as part of the day-       dying without some or any of the support
                  to-day care they provide. A person may also      they need7. Research carried out by the
                  receive support from specialist palliative       London School of Economics in 2015 also
                  care professionals who might be involved in      suggested a significant number of people
                  managing more complex care needs. They           who need specialist palliative care were not
                  will often work in partnership with other        accessing it .
                  professionals to provide co-ordinated and
                                                                   We know that many groups of people face
                  personalised care5.
                                                                   difficulties accessing the care they need.
                                                                   The disease a person is dying from can
                                                                   increase or decrease the chance a person
                                                                   has of accessing palliative care services.
                                                                   Those with cancer are far more likely to get
                                                                   the care they need compared to those with
                                                                   other conditions, particularly those with
                                                                   organ failure8.
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2021 Scottish Parliament Manifesto

The inverse care law applies in palliative       Data from the National Records for
care as it does in almost every other            Scotland has already started to show a shift
aspect of life9. Minority, deprived and rural    in care to the community is increasing,
communities are all far less likely to get the   with more and more people dying at
help they need as they approach the end          home or at their care home. There has also
of their lives10. We also know the majority      been a steady increase in recent years in
of these groups are less likely to ask for       the amount of time people spend in the
help, and existing research has shown that       community in their last six months of life15.
this acts as a significant barrier for early     During the recent COVID-19 pandemic
identification and engagement with those         there has also been a significant and
who would benefit from palliative and end        substantial increase in the number of
of life care11.                                  people dying at home. There were 4,000
The impact of people not getting the care        more deaths at home in 2020 than in
they need when they die is devastating           previous years, with 1,500 more people
for them and can also have a significant         dying at home with cancer, nearly 1,000
effect in the wider health and social            more heart disease and circulatory-related
care system. There is a growing body of          deaths, and increases in dementia and
evidence that shows that investing in            respiratory-related deaths at home. This
palliative care services in the community        has largely been driven by the need to
can increase efficiencies and reduce             free up hospital beds for patients with
costs in the wider health and social care        coronavirus. If this trend continues, then it
system, perhaps leading to significant           is important to make sure these people are
savings12. More research is needed to better     properly supported with all the care and
understand this.                                 support they and their carers need as they
                                                 approach the end of life.
Dying in Scotland in 2040                    The next Scottish Government will see
Marie Curie research suggests that between these changes accelerate toward the
2017 and 2040, Scotland will see a 14%       2040 projections.
increase in deaths, rising from 57,870 to    We need to see action now, to ensure that
a predicted 65,756 in 2040. Research         we can meet this challenge and ensure that
suggests that up to 95% of those             people who are dying and approaching the
deaths are likely to require a palliative    end of their lives have the best possible
care approach – this means nearly            experience, and for that experience to
10,000 more people dying who will            reflect what is most important to them.
need a palliative approach in Scotland
                                             It is the duty of the next Scottish
every year13.
                                             Government to meet this challenge and
Trends in place of death show that by 2040, ensure that we get it right for every person
up to two-thirds of people in Scotland       at end of life.
are likely to die in a community setting,
including their own homes, care homes and
hospices, with hospital deaths accounting
for 34% (down from 50% in 2017)14. The
same research also suggests that without
investment in social care services this will
not be possible.

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2021 Scottish Parliament Manifesto

                   Being identified for and                         The Scottish Government committed
                   accessing palliative care                        to everyone who needs palliative care
                                                                    having access to it by 2021, including a
                   One of the biggest challenges facing             commitment to ensuring that everyone
                   people who are diagnosed with a terminal         who needs an Anticipatory Care Plan will
                   illness is being able to access the care and     have one. Evidence currently suggests that
                   support they need. A lot of people who           Scotland is short of meeting this ambition
                   miss out on some or all of the care they         and more must be done to ensure that
                   need is because they are not identified          people who would benefit from an ACP
                   for a palliative approach and never have a       have the opportunity to get one.
                   chance to discuss with health and social
                                                                    • Every person diagnosed with a terminal
                   care practitioners or their family the kind
                                                                      illness should be given the opportunity
                   of support they need, their wishes and how
                                                                      to have and discuss an Anticipatory
                   they would like to spend the time they
                                                                      Care Plan, which can be read, updated
                   have left.
                                                                      and easily shared electronically
                   We believe a palliative approach should be         by anyone responsible for that
                   introduced as early as possible following          person’s care.
                   a terminal diagnosis or very serious illness     • The urgent roll-out of the National
                   where the possibility of it progressing to         Digital Platform to facilitate accessible,
                   a terminal condition is high. A palliative         easy exchange of ACPs between all
                   approach can be introduced while a person          care providers, with appropriate digital
                   is still receiving curative treatment and can      training for health and social care
                   often complement that care, so it does not         workforces. Patients and carers, where
                   need to be a choice between approaches.            appropriate, should also be able to
                   An Anticipatory Care Plan (ACP) can allow          access ACPs.
                   patients and healthcare teams to discuss
                   treatments and care options, as well as
                   preferences such as place of care and where      “Until I had personally had
                   a person would prefer to die. It also allows a   to be involved in meetings to
                   social and spiritual preferences and wishes
                   to be captured and acted on, as well as help     discuss care for my gran, I had
                   identify any carers.                             no idea that there were so many
                   Having an ACP in place can reduce the            requirements, so many forms
69%                amount of time a person spends in
                                                                    or that the waiting times for
Currently, only    hospital, including reducing the number of
69% of people      unnecessary hospital admissions, reduce          assessments could be so long. I
with a terminal
illness have an
                   the likelihood of having to go to A&E, and       think that if people had a better
electronic care    make it more likely that a person will die in
plan in place in   their preferred place of choice.                 understanding of what might
Scotland
                   Currently, only 69% of people with a             happen then they would take
                   terminal illness have an electronic care         steps to prepare and make sure
                   plan in place in Scotland16; with those with
                                                                    their loved ones won’t be faced
                   terminal cancer more likely to have one
                   than those with other conditions. This rate      with worry over what is the right
                   has been improving, but we need to see           thing to do.”
                   everyone with a terminal illness be given
                   the opportunity to develop an ACP.               Marie Curie staff member

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2021 Scottish Parliament Manifesto

Health inequities and inequalities in
palliative care
More must also be done to tackle                  Ethnically diverse groups
inequalities and inequities in access to          • Marie Curie research has shown that
palliative and end of life care. There are          many from ethnically diverse groups
many groups and populations that struggle           including Black, Asian and other minority
to access vital health and social care              groups are not accessing palliative care
services, including palliative care. These          and, when they do, palliative care delivery
include rural communities, ethnic and               is not always sensitive to their different
socially deprived groups, gypsy and traveller       needs, particularly around culture and
communities, LGBTQ+, women, older                   religion18.
people and people with learning disabilities.
                                                  LGBTQ+
A lack of knowledge about palliative and
end of life care options, and a reluctance to     • One in six LGBTQ+ people are
engage with palliative and end of life care         discriminated against using public
services are long-standing issues which             services including palliative care, and
significantly impact palliative and end of life     half of LGBTQ+ people expect to be
experiences for these groups.                       discriminated against. This can mean
                                                    LGBTQ+ people delay accessing the
Local statutory services for minority groups        health and social care services they need,
are often under-resourced and work in               making the process seem overwhelming,
silos, meaning a large proportion of people         particularly at the end of life when they
in these groups fall between the cracks             are most vulnerable19.
and are let down by unnecessarily complex
systems. Existing research has shown that         Older people
fear of discrimination, a lack of knowledge       • Older people are much less likely to get
about palliative and end of life care, and          the palliative care they need at end of
not knowing where to find support can also          life compared to younger age groups,
cause poor engagement with specialist               primarily because their condition and
care providers.                                     prognosis can be seen as a normal part
Gender inequalities                                 of dying. They often have unmet pain
                                                    needs as a result of this and struggle to
• International research exploring gender           access palliative care specialists who can
  and palliative care has shown that                co-ordinate services for them, such as
  women face significantly more barriers            Clinical Nurse Specialists20.
  in accessing the palliative and end of
  life support they need, primarily as a          • We are calling for the Scottish
  result of different social circumstances          Government’s Ministerial Task Force on
  and existing gender stereotypes around            Health Inequalities to include a specific
  care giving, among others17. There is             focus on palliative and end of life care
  significant evidence gap for this group in        to ensure everyone has equal access to
  Scotland, which must be explored.                 the palliative support they need.

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2021 Scottish Parliament Manifesto

                  Talking about dying, death                         We believe that initiatives like this need
                  and bereavement                                    greater support and investment and that
                                                                     the Scottish Government should take more
                  Dying and death remains a taboo subject            of a role in leading this national debate.
                  in the general population. Palliative care
                                                                     • The Scottish Government should lead
                  still carries with it an association with crisis
                                                                       a national public health discussion
                  intervention and/or imminent death, which
                                                                       around dying, death and bereavement.
                  means the benefits of early engagement
                  are often not fully understood or taken            • The Scottish Government must better
                  advantage of, or missed altogether.                  support existing resources and invest
                                                                       in new ones to help everyone affected
                  Many organisations and movements, such               by terminal illness feel equipped to
                  as the Good Life, Good Death, Good Grief             manage issues relating to dying, death
                  alliance, have tried to encourage a more             and bereavement in addition to well-
                  open society willing to talk about these             signposted and accessible physical,
                  subjects, but more needs to be done.                 emotional and spiritual support.
                  Marie Curie supports Good Life, Good
                  Death, Good Grief’s End of life Aid Skills
                  for Everyone (EASE) resource, which has
                  been designed to enable people to be more
                  comfortable and confident in issues they
                  face around dying, death and bereavement.

                  Community support networks
                  Local community networks, including                identified and will be supported in the
                  faith groups, can provide a vital source           coming years.
                  of support for terminally ill people, their        There is undoubtedly potential to harness
                  families and carers.                               the resource, compassion and dedication
                  Compassionate Community initiatives,               of communities more deliberately and
                  such as Compassionate Inverclyde, which            efficiently than is currently the case.
                  was established by Ardgowan Hospice in             The pandemic has shown how quickly
                  2016, help provide information, support            community initiatives can be mobilised and
                  and day-to-day respite for informal carers         the difference this can make for the most
                  to cope with the pressures and implications        vulnerable.
                  of caring for a terminally ill person at home,     • We are calling for the establishment
                  as well as a release for patients themselves.        of a Compassionate Communities
                  This is especially important, given a                Network across all Integration
                  projected two-thirds of people will die in           Authorities, with identified resource
                  community-based settings by 2040.                    to support capacity building in
                  The Truacanta Project which is run by                communities.
                  the Scottish Partnership for Palliative            • Empower and train volunteers to help
                  Care (SPPC) was set up to support local              bridge statutory and non-statutory
                  communities across Scotland interested               support and act as an early-warning
                  in taking community action to improve                system to health and social care teams
                  people’s experiences of dying, death, loss           as needs of those affected by terminal
                  and care. A number of projects have been             illness change.
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2021 Scottish Parliament Manifesto

Integration of health and                        uncertainties around long-term planning
social care                                      and sustainability as a result of short-term
                                                 contracts, as well as reduced financial
The health and social care system is still       support from statutory partners, but greater
less integrated than was intended when           expectation on delivery.
the Public Bodies Act was passed. The third
                                                 There is a recognition and understanding
sector plays a key role in integrated services
                                                 that the third sector and statutory sources
but is not seen as an equal partner and is
                                                 will both have fewer financial resources in
often not included in early conversations
                                                 the future, highlighting a need for greater
with Integration Authorities regarding the
                                                 collaborative working and innovation with
strategic planning and commissioning of
                                                 all key stakeholders to ensure successful
palliative care services.
                                                 outcomes for communities. This will be
Marie Curie is the largest third sector          even more crucial following the impact
provider of palliative care services for         of coronavirus. However, this can only be
adults in Scotland, as well as being the         achieved if there are sustainable funding
leading charitable funder of palliative and      models for the third sector, especially
end of life care research. The third sector      those commissioned by statutory bodies to
has the expertise, knowledge and skills          deliver services.
that should be engaged with far sooner in
                                                 • We are calling for a commitment to
commissioning and planning processes of
                                                   innovation and sustainable funding
integration authorities.
                                                   by the Scottish Government with
• The third sector must be included as             minimum three-year contracts
  voting members of all Integration                between the third sector and
  Authorities in Scotland.                         statutory partners.
Many third sector organisations are              • Commissioners to take a strategic,
commissioned and expected to deliver               whole-system approach to developing
vital health and social care services              services focused on outcomes and
to local communities, yet many third               needs of terminally ill people in
sector organisations struggle to secure            communities.
financial continuity. This can include
                                                                                                Layton Thompson/Marie Curie

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2021 Scottish Parliament Manifesto

                  Place of care and death
                  Data from National Records Scotland              Hospitals
                  (NRS), has shown a significant shift in place    A third of patients in Scottish hospitals
                  of death from hospitals to communities           are in their last year of life and 10% die on
                  during the pandemic for the vast majority        their current admission22. We know that
                  of non-coronavirus patients over the last        many of these people miss out on the care
                  eight months21. There has been an increase       and support they need when they become
                  in cancer deaths at home, with 1,500 more        terminally ill, are approaching the end of
                  deaths than average during this period.          life, and when they die. In 2017/18, 26,917
                  Dementia deaths have seen an increase            people in Scotland died in a hospital (47%
                  in both care home and home settings,             of all people).
                  and there have been nearly 800 extra
                  respiratory deaths at home. There has been       While there are examples of good practice
                  a significant reduction in hospital deaths for   of palliative and end of life care being
                  people dying of non-coronavirus conditions       identified and delivered through acute
                  at the same time. In normal times, dying at      settings, many hospitals are still not
                  home is where the majority of patients tell      identifying enough patients who could
                  us they want to be, therefore we believe this    benefit from palliative care. Challenges
                  shift could be a positive development.           for this include; IT barriers, failing to meet
                                                                   specialist palliative and end of life care
                  There have been innovations and service          staffing levels, training and education and a
                  responses to meet this shift. However, there     ‘treat and cure’ ethos23.
                  are serious concerns that many terminally
                  ill people and their carers will not have        As a result, these patients miss out on
                  received the care they needed at home            the end of life support they need and
                  during the pandemic. This will include           are entitled to24 and this is likely to have
                  accessing health and social care services, as    worsened during the coronavirus pandemic
                  well as community support. In some cases,        from hospitals being under intense
                  this may have meant patients dying without       pressure. The impact on patients who
                  proper pain or symptom management, with          have missed out on this palliative and end
                  family carers overwhelmed by the demands         of life support in hospitals will have been
                  of caring, and struggling with grief and         distressing, but equally for their families
                  bereavement following the death of the           who have had to grieve for their loss in
                  cared-for person.                                much more isolating circumstances due to
                                                                   the pandemic.
                  • Research and evidence should
                    be carried out to understand the               • Scottish policy and any new palliative
                    experience of terminally ill people and          care strategy must actively support
                    their carers during the pandemic, to             palliative care in acute settings.
                    ensure that good practice is identified,       • A full range of recommendations for
                    lessons are learned, and additional              supporting palliative care in acute
                    support and resources are put in place           settings can be found in Marie Curie
                    to ensure that people get the care they          and the University of Glasgow’s report,
                    need to maintain this shift of care into         Past, present and future caring for those
                    the community.                                   approaching the end of life in Scottish
                                                                     Hospitals, which was published in 2020.

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2021 Scottish Parliament Manifesto

Unscheduled care                                   • We are calling for more investment
The complexity of terminal conditions                and development of primary care
means unscheduled and out-of-hours                   unscheduled services and NHS 24 to
care (telephone advice, primary care,                maximise their potential to provide
ambulances, emergency departments                    cost-effective unscheduled care for
and hospital admissions) is heavily relied           people approaching end of life.
on to support those affected by terminal           • Enhanced data recording and analysis
illness, particularly in the final year of life,     systems at GP practice, board and
as conditions worsen and become more                 national level to improve reliable
unpredictable, with those affected often at          identification of people with palliative
breaking point.                                      care needs and coordination of
                                                     their care.
University of Edinburgh research, funded
by Marie Curie and The Chief Scientist’s
Office for Scotland, has shown that more
than 90% of people in Scotland used
unscheduled care five times on average
in the last year of life and 34% of all
unscheduled care interaction happened
in the final month of life25.
Much of this support has been used by
terminally people with multiple health
conditions who have unidentified or unmet
palliative care needs in the community and
inadequate support for informal carers.
The total cost of unscheduled NHS care
for people in Scotland for people in their
last year of life was nearly £190 million,
of which only 3.9% was for provision of
primary care services. Innovating care
models to better support palliative care
delivery in communities could reduce
unscheduled care costs, as well as help the
majority of terminally ill people to die in
their place of choice.

                                     Ambulance
                                     £22m
       Admissions                    A&E
        £150mours                    £10m
                                    GP OOH   NHS
                                             24
                                    £4m      £3m

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2021 Scottish Parliament Manifesto

                  Homelessness                                   In Scotland in 2018, there were an
                  People experiencing homelessness are           estimated 195 homeless deaths, a 19%
                  often denied the right to die well with        increase on the estimate of 164 in 201729.
                  dignity and face staggering levels of health   Scotland had the highest rate of homeless
                  inequalities, as well as being unable to       deaths in all GB countries in 2018 per
                  access palliative and end of life care when    million population (35.9); this was more
                  they need it; we also know these groups are    than double that of England (16.8) and
                  less likely to ask for help.                   Wales (14.5). Over half of those deaths in
                                                                 2018 (53%) were drug related and 8% were
                  Many of those experiencing homelessness        alcohol related.
                  have tri-morbidities consisting of a
                  physical condition, mental health issue and    This data30 suggests that a significant
                  alcohol/substance dependency which has         number of people experiencing
                  a significant impact on quality of life and    homelessness will have died with a
                  life expectancy26 – in Scotland in 2018, the   palliative care need but there is no
                  mean age at death was 43 for women and         indication if, or when, they will have
                  44 for men27.                                  received any specialist or generalist
                                                                 palliative and end of life support.
                  End of life care wishes also remain poorly
                  understood for people experiencing             • The Scottish Government should fully
                  homelessness, though research has shown          implement the Homelessness and
                  a fear of needing care and losing control,       Palliative Care Action Plan published
                  fear of dying alone, fear of being forgotten     by Marie Curie in 2021.
                  and spiritual and practical concerns as
                  common concerns of homeless people
                  at end of life28. Similar to the general

                                                                             195
                  population, not having early conversations
                  about end of life care wishes in partnership
                  with health and social care practitioners
                  and family/support networks (anticipatory                   homeless
                  care planning) can result in a more
                  distressing end of life experience.
                                                                               deaths

                                                                       In Scotland in 2018, there were
                                                                         an estimated 195 homeless
                                                                       deaths, a 19% increase on the
                                                                           estimate of 164 in 2017.

                            In Scotland in 2018, the
                           mean age at death was 43
                          for women and 44 for men

14
2021 Scottish Parliament Manifesto

Social care

S
      ocial care is an essential part of the      but concluded that such a shift in care
      care and support that terminally ill        would not be possible without significant
      people receive, helping them to live        investment in social care.
as well as possible right up until their death.   Marie Curie supports the Scottish
Social care can be provided in a person’s         Government’s recent announcement
own home or through a care home.                  regarding establishing a National Care
It can help those who are terminally ill to       Service in Scotland. We believe that this
remain at home for as long as possible,           should be an early priority of the new
if that is their wish, through providing          Scottish Government. Alongside colleagues
tailored, day-to-day support. Social care         in MND Scotland, Hospice UK and Sue
teams often work in partnership with              Ryder, we have identified the following key
specialist palliative care providers, such as     issues which we believe any new national
Marie Curie, to deliver that care.                service should address to support those
                                                  living with a terminal illness:
                                                  1. Anticipatory Care Planning:
  In 2019/20, 88.6% of people in
                                                  Anticipatory Care Plans are developed
  Scotland spent their last six months of
                                                  as early as possible, and are reviewed
  life either at home or in a community
                                                  regularly, to support early intervention
  setting, with 11.4% spending that time
                                                  and a proactive care approach to meeting
  in hospital. This is equivalent to an
                                                  people’s changing social care needs.
  average of 21 days in hospital in the six
  months prior to death31.                        2. Partnership working: Effective
  Over the past 10 years, the                     partnership working, information sharing
  percentage of time spent at home or             and care co-ordination across statutory,
  in a community setting in the last six          voluntary and independent agencies
  months of life has gradually increased          in health and social care to support the
  from 85.7% in 2010/11 to 88.6% in               strategic planning, commissioning and
  2019/2032.                                      delivery of responsive services that meet
                                                  people’s social care needs.
However, long-standing fundamental                3. Workforce: The social care workforce
issues in social care in Scotland, including      is supported and valued with sufficient
a lack of sustained financial support,            numbers of staff in the right place with
workforce challenges and compromised              the right skills and training to meet the
systems, have been exacerbated by the             dynamic social care needs of people with
coronavirus pandemic. When combined               terminal or life-shortening conditions.
with a sudden shift towards community             4. Commissioning: The commissioning
deaths since March 2020, coronavirus has          and contracting of social care support
significantly impacted the care terminally        services to have an agile response to the
ill people receive and placed already             changing social care needs of people with
exhausted workforces under further                terminal or life shortening conditions.
intense pressure.
                                                  5. Care packages: People with terminal
Before coronavirus, Marie Curie research          or life shortening conditions are assessed
projected that by 2040 two-thirds of              for social care packages swiftly and receive
people will die in community settings             their full assessed care package without

                                                                                                                 15
2021 Scottish Parliament Manifesto

                  delay. These care packages should also            In some cases, necessary care is simply
                  include regular carers, flexibility of visiting   not available, and people wait for an
                  times and longer visits.                          unacceptably long time to be issued with
                  6. Self-directed support: People with             independence or mobility aids or for care
                  terminal or life shortening conditions are        packages to be arranged. Not only do these
                  supported to access the full range of self-       factors contribute to people having to stay
                  directed support options, if they wish to,        longer in hospital or hospice settings than
                  including allowing family members to be           is necessary, but they can contribute to a
                  paid to care, where appropriate.                  worsening of a person’s physical, mental or
                                                                    personal situation.
                  7. Carers: Informal and family carers of
                  people with terminal or life-shortening           • There must be a much more rapid
                  conditions are fully supported during and           response for aids and adaptations for
                  after the caring period, including respite          those with a terminal illness.
                  and bereavement support. This should              Wellbeing has been a long-standing issue
                  include recognising the financial impact          in social care workforces, even before
                  of caring, particularly where many have           coronavirus. There is often limited support
                  to reduce working hours or give up their          available to staff to ensure they can address
                  jobs altogether.                                  mental health concerns and issues, and
                                                                    this can lead to staff becoming exhausted,
                  Among these issues, there are a number
                                                                    extended sickness absences or even their
                  of specifics that we believe need to be
                                                                    departure from social care.
                  addressed. A large proportion of social care
                  models/frameworks are rigidly confined to         • Accessible emotional support must be
                  time and task, meaning carers are unable to         available to all care providers which is
                  provide the full extent of care patients may        proactively signposted through Health
                  require (usually more complex for palliative        and Social Care Partnerships and
                  or end of life care service users) because          statutory bodies to support social care
                  they only have 15-minute slots per patient.         staff with their mental health, grief
                  This can have a domino effect throughout            and bereavement.
                  the day and cause extensive overtime,
                  much of which is unpaid.
                  • We are calling for 15-minute time and
                    task models to be banned and replaced
                    by a strategic commissioning approach
                    which has person-centred outcomes at
                    the heart of delivery.
                  • The Real Living Wage per hour for
                    social care staff should be extended to
                    include overtime.
                  Greater investment and support in such
                  approaches and in organisations delivering
                  these services, such as Marie Curie, who
                  could work in partnership with social care
                  services would improve patient outcomes
                  and potentially relieve pressure on social
                  care services.

16
2021 Scottish Parliament Manifesto

Supporting digital

T
        echnology has helped innovate           Technology should support patient-centred
        palliative and end of life care         care for terminally ill people through a
        services during the coronavirus         blended approach with face-to-face
pandemic, allowing a continuity of care         appointments and enable those working
and communication between terminally            with patients to have the most up-to-date
ill patients, their families and carers and     information about that care and be able to
health and social care teams.                   provide appropriate input.
Remote consultations have become a              • The Scottish Government must
pivotal, day-to-day part of health and social     continue to invest in national digital
care services as a result of coronavirus.         health innovations to sustain remote
While they will never replace face-to-            consultations and enable all those
face appointments, it is important that           supporting terminally illness patients,
technology’s role in the future of palliative     and patients themselves, to easily
and end of life care is mapped out to             access digital records which can be
complement existing services.                     updated by anyone responsible for that
Marie Curie research into the effect of           person’s care.
digital health consultations on our hospice
teams, patients and their families during       While technology has been a lifeline
coronavirus has shown:                          to many, especially throughout the
                                                pandemic, there is still a high prevalence
                                                of digital exclusion. Minority groups,
  Benefits:                                     including ethnically diverse, the elderly
  • An increase in patient choice in            and low-income households, in addition
    how they want to access palliative          to rural communities which have limited
    care services.                              or no access to digital devices and/or
                                                connectivity, makes establishing and
  • More flexible carer support making
                                                maintaining engagement with palliative
    clinical advice easily accessible for
                                                care services significantly more complex.
    those caring for someone with a
                                                It has also led to high levels of isolation
    terminal illness.
                                                and loneliness.
  • New modes of service delivery.
  Challenges:
  • With relationship building on first         “Most of my clients do not
    assessment.                                 have access to technology or
  • Patient/carer communication
    difficulties.
                                                don’t know how to use it and,
  • Advanced Care Planning where                especially during lockdown, this
    an early relationship had not               has made them very isolated and
    been established.
                                                has impacted heavily on their
                                                mental health. Better access to
                                                technology is needed and help
                                                with using it.” Marie Curie Nurse

                                                                                                                17
2021 Scottish Parliament Manifesto

                Philip Hardman/Marie Curie

                                             Marie Curie research indicates that            While digital training/skills and connectivity
                                             telephone consultations have been              is vital, there needs to be greater
                                             the preferred option of our patients           recognition of issues with access to devices
                                             throughout the pandemic, which may be          as well as education and upskilling.
                                             due to patients not having the appropriate     • As part of the suggested
                                             technology to facilitate video consultations     Compassionate Community
                                             at home, nervousness about the ease              Network initiative, funding should
                                             of using video consultations or feeling          be specifically allocated to support
                                             uncomfortable on camera.                         outreach and engagement with
                                             • As part of the Scottish Government’s           minority groups to ensure they can
                                               investment in digital health, training         engage with the palliative and end of
                                               must be included for using digital             life support they need.
                                               systems and devices to upskill health
                                               and social care workforces, terminally
                                               ill patients and their families to
                                               increase user confidence.

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2021 Scottish Parliament Manifesto

Family (informal) carer support

T
       he role of family carers in a person’s     more and more carers and families have
       palliative and end of life care is         needed support.
       crucial in helping terminally ill people   • Carers need to be identified by health
get the day-to-day support they need for a          and social care professionals and
good quality of life. But support for family        then referred for support where
carers themselves is often overlooked and           appropriate, including for an Adult
needs to be more greatly recognised33.              Carer Support Plan (ACSP) or Young
Identifying informal carers to ensure they          Carers Statement (YCS). For those
receive the support they are entitled to can        caring for someone with a terminal
often be difficult and must be improved, as         illness it will be important that this
many informal carers do not self-identify as        support is prioritised and fast-tracked
carers or get picked up by formal services          to avoid a breakdown in care40.
and therefore miss out on support and             Carers should be able to access respite
benefits they may be eligible for.                care when needed, as well as information
Family carer breakdown is the most likely         and peer support through carers’ centres,
factor in a person with a terminal illness        and others, to enable them to continue to
being admitted to a hospital, hospice or a        provide care to the person they are looking
care home34. Having a live-in carer is also       after and maintain their own wellbeing.
the single most important factor in whether       This is especially important given the recent
someone is able to die at home or not35.          shift from hospital to community deaths,
                                                  as well as the projected increase to two-
It has been estimated that an additional
                                                  thirds of people dying in community-based
400,000 people took on unpaid caring
                                                  settings by 2040.
roles during the first COVID 19 lock down
due to health and social care restrictions,       Marie Curie’s report Life after death:
taking the total number of unpaid carers          supporting carers after bereavement, in
in Scotland to around one million36. Before       partnership with Reform Scotland and Sue
coronavirus, the estimated value of unpaid        Ryder, calls for more recognition of the
care work in Scotland is £36 billion37.           impact of death on the carer and the effect
                                                  on the carer’s physical and mental health,
Unpaid care in Scotland over the course
                                                  their relationships, their ability to work and
of the pandemic to date has been
                                                  their finances:
valued at £10.9 billion38 and 3 in 5 of
us will become carers at some point in            • A new Carers (Bereavement Support)
our lives39.                                        (Scotland) Bill should be introduced
                                                    early in the next Parliament to provide
Evidence from Marie Curie services working
                                                    support plans for carers following the
during the early part of the pandemic
                                                    end of their caring role.
found that many people with family carers
were slow to engage with services and             • A new fund should be allocated to
often much later at crisis point which              support training and education for
caused further challenges.                          carers returning to work/seeking
                                                    employment.
Latterly, with the greater shift in care into
                                                  • A new Post-Caring Support Payment
the community and people’s own homes.
                                                    should be created to help carers
Marie Curie’s nursing and community
                                                    struggling financially following the end
services have been in considerable
                                                    of their caring role.
demand and stretched to capacity, as
                                                                                                                  19
2021 Scottish Parliament Manifesto

                                             Grief and bereavement

                                             W
                                                        hen you lose a loved one, sadness   where lockdown regulations significantly
                                                        and grief can make dealing          restricted hospital, hospice and care home
                                                        with everyday life a challenge.     visiting which caused distress to patients,
                                             It can be hard to concentrate and make         families and carers and resulted in a lonelier
                                             simple decisions.                              end of life experience for many.
                                             People experience grief and bereavement        Coronavirus regulations also influenced
                                             at different stages and in different ways,     how people were able to grieve for their
                                             in some cases even starting before the         loss, which often were in much more
                                             person has died. Grief can also continue for   isolating environments and will have a
                                             extended periods after someone has died.       lasting physical and emotional impact.
                                             While the pandemic has acted as a catalyst     We also know that minority groups are less
                                             to improve some support being offered, it      likely to ask for help, and usually experience
                                             previously has not been well recognised or     more complicated grief as a result of social
                                             available for people who have experienced      circumstances than the general population
                                             a bereavement; this also includes health       which has been exacerbated during
                                             and social care professionals.                 the pandemic.
                                             The impact on families can be equally as       • Marie Curie supports the Bereavement
                                             damaging, with a significant increase in         Charter for Scotland which champions
                                             levels of grief and bereavement, as well as      everyone’s right to access the support
                                             more complicated grief, being recorded           they need following a bereavement;
                                             for those whose family members did not           which will be different for each person.
                                             get the palliative support they needed.
                                             This has been exacerbated by coronavirus,
                Philip Hardman/Marie Curie

20
2021 Scottish Parliament Manifesto

Education and training

T
        raining is a vital element of            • There must be a flexible, ongoing
        professional development,                  palliative and end of life care
        knowledge and experience                   education programme established
building but many health and social care           which reflects a blend of face-to-
professionals face significant challenges          face and digital learning to provide
accessing and undertaking palliative and           better training for everyone delivering
end of life care training. This can result in      palliative care including families and
(early) referral opportunities being missed        informal carers.
due to lack of knowledge, and terminally ill     Within our education system for young
patients missing out on the care they need.      people, there is a wide spectrum of
A Palliative and End of Life Care                willingness and capability in teachers
Education and Training Framework by              and staff to talk about dying, death and
NHS Education for Scotland (NES) and the         bereavement in schools, colleges and
Scottish Social Services Council (SSSC) to       universities, yet we are still producing a
support health and social care professionals     younger generation who are not equipped
has been developed, but it is unknown            to be able to handle bereavement, or even
how workforces are performing against the        to talk about it. The education system must
framework’s principles and what structure        build resilience and support by working
is in place (if any) to ensure consistent        to remove taboos around dying, death
training delivery.                               and bereavement.
Currently, we understand that much of the        • The Curriculum for Excellence should
social care workforce does not currently           be reviewed to ensure that talking
have palliative and end of life care training,     about dying, death and bereavement
yet is expected to deliver it for patients at      is a key component and that teachers
home and in care homes.                            across Scotland have the resources and
                                                   support to engage students in open
• We are calling for a review of health
                                                   conversations and discussions about
  and social care workforces against
                                                   these issues.
  the NES/SSSC and Palliative and End
  of Life Care Framework to understand
  current care delivery and areas for
  improvement.
• The introduction of mandatory
  palliative and end life care training for
  all health and social care staff working
  with terminally ill people to ensure
  high, consistent standards of care.
Resource is one of the main obstacles for
being unable to release staff for palliative
and end of life education and training,
which has been exacerbated through
the coronavirus pandemic by additional
demands on acute settings, primary care
and social care.

                                                                                                               21
2021 Scottish Parliament Manifesto

                  Welfare and benefits

                  T
                          he financial impact of terminal illness   • Extend eligibility for the Carer’s
                          on the person affected and their            Allowance and Carer’s Allowance
                          family is often significant. Terminal       Supplement for up to six months after
                  conditions require a range of support at all        the person’s caring role comes to an
                  levels, especially as they advance, which           end (from the current eight weeks).
                  many people are unable to fund themselves           Any replacement to Carer’s Allowance
                  independently.                                      introduced by the next Scottish
                  Easy access to benefits is paramount                Government must continue for at least
                  for terminally ill people, their families           six months after the death of the cared
                  and carers to enable them to have as                for person.
                  high quality of life as possible. But many        There has been some progress in helping
                  people affected by terminal illness do            terminally ill people access benefits more
                  not apply for benefits because they do            quickly and easily. In 2018, Marie Curie
                  not know what they are entitled to, they          and MND Scotland successfully led the
                  do not think they will be eligible, there is      campaign for the Social Security (Scotland)
                  a stigma associated with claiming some            Bill to include a legal definition of terminal
                  benefits and people can be put off by long        illness that was based on clinical judgement
                  application processes.                            and not one that included timescales,
                  We know that in many cases people                 as currently used by the DWP, to support
                  affected by terminal illness can be eligible      decision-making for those applying for
                  for more than one benefit.                        benefits through the Special Rules. This also
                                                                    means doctors and nurses can express this
                  • We are calling for a simple online              clinical judgement to enable the quickest
                    application form to be created to               response possible.
                    support applications for multiple
                    benefits to minimise time spent                 However, it will create a two-tier system in
                    completing forms and provide a better           Scotland upon its introduction in 2021 –
                    experience for those applying for               as Universal Credit and Employment and
                    multiple benefits.                              Support Allowance will remain reserved to
                                                                    Westminster.
                  • Easy to read materials should be
                    distributed to accessible locations             This could mean that potentially, a person
                    to ensure essential information is              in Scotland may be able to access fast
                    available to help everyone affected by          tracked disability benefits but be denied
                    terminal illness understand what they           the same if applying for Universal Credit. It
                    are entitled to and how to claim it.            will require doctors to use two very different
                  As outlined above, informal family carers         definitions and potentially reach two
                  face considerable financial pressures, both       different conclusions for a person who is
                  during their caring and following the end of      terminally ill and wishing to access benefits
                  the caring role, particularly when the cared      under the special rules for terminal illness.
                  for person has died. We believe that carers       It will also require doctors and nurses to
                  should be better supported financially,           use two forms, and work with two social
                  particularly following a bereavement.             security agencies.

22
2021 Scottish Parliament Manifesto

• Marie Curie and our partners are           reduction of hours or may have even lost
  calling for the UK Government to adopt     their job. Many may also have been unable
  the Scottish Government’s definition of    to return to work as the terminal condition
  terminal illness for all benefits, which   of the person they are caring for may
  will not only lead to a fairer system,     have deteriorated further throughout the
  but will prevent a two-tier system         pandemic requiring greater care, which
  in Scotland.                               they have been unable to access.
The current economic climate and             • The Scottish Government should fund
recession caused by coronavirus has            further research to understand what
created even greater financial pressures       impact the pandemic has had on those
and reliance on social security for some       caring for someone with a terminal
terminally ill people, their families and      illness at home, and subsequently
carers. Carers who were working pre-           help inform the role of Scottish Social
pandemic may not have been able to             Security in coronavirus recovery
throughout the coronavirus pandemic            and beyond.
due to being on furlough, have seen a

                                                                                                            23
2021 Scottish Parliament Manifesto

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                     Reference Tables 2019 Open 2021                    Care for Homeless People; a systematic
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24
2021 Scottish Parliament Manifesto

  briefings/marie-curie-briefing-                 Spent in a Community Setting
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21. Ibid                                          globalassets/media/documents/policy/
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  PHS Percentage of Last Six Months of Life
  Spent in a Community Setting.
32. PHS Percentage of Last Six Months of Life

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