Marie Curie Response Scottish Partnership for Palliative Care Consultation

Marie Curie Response
                         Scottish Partnership for Palliative Care
                         Consultation

Introduction

We welcome the opportunity to respond to the Scottish Partnership for Palliative Care (SPPC)
consultation on developing a position paper on the future of palliative and end of life care in Scotland,
which is intended to support and inform the Scottish Government’s strategic framework for action on
palliative and end of life care.

We support the SPPC’s vision on the future of palliative and end of life care in Scotland and would like
the strategic framework for action to include:

     A clear commitment to ensure that everyone with a palliative care need has access to it by 2020.
     Robust data collection to measure progress and patient/family experience.
     Training and support for health and social care professionals to deliver effective care for people
      who are terminally ill. This should be in all settings from care homes to acute hospital wards.
     A clear resource commitment to achieve the aims and objectives of the strategy.

We also want the strategic framework for action to be linked to other legislation and developments in
health and social care including; the planned refresh of the 2020 vision document for Scotland to
include references to terminal illness, dying and death; that carers for people living with a terminal
illness are supported through the Carers (Scotland) Bill; that people living with dementia are supported
through the third dementia strategy; and ensuring that palliative care is an early priority for integrated
health and social care boards and that the framework for action provides indicators to assess health
and social care integration core outcomes.

Key Changes

1. 2020 vision

Recent research carried out by the London School of Economics (LSE)1, and commissioned by Marie
Curie, estimates that nearly 11,000 people who need palliative care in Scotland each year are not
accessing it and that between 35,000-40,000 of the 54,000 people who die each year in Scotland need
some form of palliative care. We would like the strategic framework for action to include a clear
commitment to ensure that everyone with a palliative care need has access to it by 2020. This
commitment should be made alongside the planned refresh of the 2020 vision document for Scotland.
Recognition that the 2020 vision document for Scotland to include references to terminal illness,
palliative care, dying and death will challenge public perceptions and understanding and will lead to a
more public debate of the issues.

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1
    http://www.pssru.ac.uk/archive/pdf/4962.pdf
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2. Robust data

Our research has found that there is a lack of robust data in Scotland to form a clear national picture of
the level and quality of care being received by those with a terminal illness, a palliative care need or at
end of life.

At present Scotland does not collect and analyse enough data to show the progress we are making in
improving care for people living with a terminal illness. It has been two years since Healthcare
Improvement Scotland published its indicators on palliative and end of life care, but there has been no
review against them.

In May 20152, Jamie Hepburn, The Minister for Sport, Health Improvement and Mental Health
addressed the importance of being able to have data and information to be able to describe progress
and improvement work. He noted that future plans include:

     a national approach to measurement and monitoring, including a key indicator on end-of-life care as
      part of the requirements to measure improvements in health and wellbeing outcomes under health
      and social care integration
     encouraging the local use of the National Survey of the Bereaved (VOICES) survey, currently used
      in England, to support improvement and provide data at a national level to inform future strategy
      and policy development, and
     working in partnership with the NHS, the Convention of Scottish Local Authorities and the third
      sector to develop a new framework to effectively listen and respond to the voices of those who use
      health and social care services.

3. Workforce, training and education

In our report, Triggers for palliative care, published in June 2015 we highlight evidence which shows a
number of barriers people face in receiving palliative care:

     Some conditions are not recognised as terminal - this can lead to people missing out on palliative
      care.
     Some conditions have an uncertain trajectory - this may complicate professional decisions about
      when to introduce palliative and end of life care.
     People don’t always understand what palliative care is and what it can achieve - knowledge that
      palliative care can be delivered alongside active treatment may be limited, healthcare professionals
      may be reluctant to introduce palliative care because they perceive a palliative care approach as
      giving up on the patient, and some professionals may not think palliative care is relevant to their
      patient’s care.
     Some professionals may not feel confident in delivering the care that people need - studies show
      that healthcare professionals lack confidence in making decisions and communicating with people
      about their care as they approach the end of their life.
     Links between professionals who care for people with specific conditions and palliative care
      specialists are underdeveloped - when referrals to palliative care do happen, sometimes they are
      only in the last stages of a person’s condition.

We believe that this can be addressed through education and training targeted at health and social
care professionals across all settings, this includes:

     Improving palliative care across all settings – making sure staff, patients and their carers have
      enough information about palliative care and that this can be delivered by a wide range of
      professionals across a range of settings.
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2
    http://www.scottish.parliament.uk/parliamentarybusiness/report.aspx?r=9942&mode=pdf
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     Ensuring all medical and nursing staff, including those working in the community, know about their
      local specialist palliative care teams and how to contact them. This will involve targeted training,
      education and identification of appropriate referrals practices and referral criteria.
     Ensuring better coordination and team working - strong links and effective coordination with
      specialist palliative care teams can help clinical specialists ensure appropriate care for their
      patients.
     Recognition of and using the right triggers for palliative care can help health professionals identify
      when these needs might require a palliative care approach.
     Effective communication between care teams and at points of care transition including use of
      existing systems, such as the Key Information Summary, to communicate care and treatment
      wishes.

4. Integration

In April 2015, 31 new Integrated Joint Boards were created in Scotland to deliver adult health and
social care services. Palliative care has been designated as a function that must be integrated. In
March 20153, Shona Robison, The Cabinet Secretary for Health, Wellbeing and Sport addressed the
importance of palliative care in the integration of health and social care to provide more coherent
services in end-of-life care.
Research shows that over 50% of people currently die in Scottish hospitals, but the majority would
prefer to die at home or in a homely setting. People in the last 6 months of life can spend anywhere
between 10 and 22 days in hospital and it is estimated that 30% of people in Scottish hospitals are in
their last year of life. Providing more services in the community will reduce pressure on hospital beds,
meet people’s wishes and has the potential to be a more efficient and effective use of NHS resources.
A review by the London School of Economics has estimated that providing palliative care to those that
need it could potentially generate net savings of more than £4million in Scotland.
The Nuffield Trust has estimated that the NHS could be able to realise potential savings of nearly £500
per person by enabling for people at the end of life to be cared for in the community or at home. Not
only does this mean that the person gets the care they prefer, but it is likely to save valuable statutory
funds to be reinvested elsewhere, as well as relieve the pressure on acute services, such as A&E.
Shona Robison noted that is absolutely clear that many people want to spend their last few days and
hours in their own home and do not want to be in a hospital environment. She noted that there is a duty
to ensure that the integrated teams focus on enabling that vision, and that palliative care should be an
early priority for the new integrated boards. The strategic framework for action should therefore be
linked to achieving this vision.

5. Caring for someone with palliative and end of life care needs

We welcome the recognition of workforce barriers within Care Homes and fully support education and
training to ensure that those delivering care have access to information about palliative care. We would
also like to see investment in building career structures for those delivering care in care homes and
carers in the wider community setting. Often caring for someone is regarded as menial work, with no
career structure or training available to support carers. Yet the essential tasks involved with caring for
someone with a terminal illness or at the end of life are complex and require skill. Wider culture change
in society is required to recognise this and provide viable career structures in caring, alongside work to
empower, support and provide training for carers.

We further recognise that informal carers for people living with a terminal illness need to be fully
considered within the strategic framework for action. Much of the care for people with a terminal illness,
palliative care need or those at the end of life will be delivered in the home by family members and we
need policy initiatives aimed at supporting carers to care for an individual at home for as long as
possible. Research shows that having a carer is the single most important factor associated with home
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3
    http://www.scottish.parliament.uk/parliamentarybusiness/report.aspx?r=9860&mode=pdf
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death, whereas living alone or being unmarried increased the likelihood of a hospital death4. People
without a live-in carer have worse perceptions of pain management and are far less likely to access a
range of community-based services than others. They are also less likely to report that they had
sufficient help and support from health and social services to be cared for at home5.

More work is needed to ensure that those caring for someone with a terminal illness are identified,
automatically qualify for statutory support, have access to information and advice on what support is
available to them and how to access it, and have a single point of contact to help the carer co-ordinate
support packages across a range of partners and providers.

Research carried out by the London School of Economics (LSE)6 also shows that if you have a terminal
illness, you may find it more difficult to access the right care if you have a terminal condition other than
cancer, are 85 years of age or over, are from a black, Asian or minority ethnic background, live in
particular areas, and live in the most deprived or rural areas of the country. We believe that palliative
care should be consistently delivered across Scotland throughout public, private and voluntary sector
partners so a universal level of care and support can be provided, no matter who you are or where you
live.

Good practice

There is a range of examples of good practice carried out by Marie Curie that can be used to inform
and improve palliative and end of life care in Scotland. These include information and advice, data
collection, analysis and research, community support, bereavement services and fast track services.

Marie Curie Information Service - Marie Curie supports people living with a terminal illness and their
families by providing information and support services online and over the telephone. A variety of
support information can be accessed on our website at www.community.mariecurie.org.uk or by calling
0800 090 2309 (Monday to Friday, 9am to 5pm). The Marie Curie Community forum is also always
open. It’s a network of people living with a terminal illness, families, friends and carers, which anyone
can join to share experiences and find support.

Bereavement Support – Marie Curie bereavement services support families in the community,
whether they are recently bereaved or facing life challenging transitions due to a family member’s
declining health. The Marie Curie Hospice, Glasgow launched its Children and Young People’s
Bereavement Service which delivers tailored support to meet the needs of each child and family
affected by bereavement. This service aims to highlight vulnerable children and young people at risk,
form joint working relationships to support community development and increase support in the delivery
of pre- and post-bereavement work

Companionship, emotional support and practical information – Specially trained Marie Curie
Helper volunteers visit people living with a terminal illness at home for a few hours each week to offer
one-to-one support. They are also available to chat to people over the phone. A Helper volunteer can
provide a friendly ear; help with small tasks such as making a cup of tea; give carers a short break; and
offer information on further support and services.

Nursing Care and support at home – Marie Curie Registered Nurses and Marie Curie Healthcare
Assistants provide nursing care and emotional support for people living with a terminal illness and their
families. They give hands-on care to help people manage difficulties such as pain and nausea, making
sure they are as comfortable as possible at home. The nurses and healthcare assistants are also there
for the carers, giving them advice and allowing them to get some rest from their caring role.

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4
  http://www.ncbi.nlm.nih.gov/pubmed/23695827
5
  Equity in the provision of palliative care in the UK: Review of Evidence, London School of Economics (2015)
6
  http://www.pssru.ac.uk/archive/pdf/4962.pdf
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Health and personal care support after discharge from hospital – Marie Curie Health and Personal
Care Assistants help people living with a terminal illness to manage at home, giving the extra support
people need immediately after their discharge from hospital – usually a time of high anxiety for them,
and their families. The team also helps people who are already at home but who need extra support so
they can avoid admission, or readmission, to hospital. The health and personal care assistants can
provide nursing care, emotional support, practical assistance such as washing and dressing, and help
with minor household tasks and preparing a simple meal.

Marie Curie fast-track discharge services – these help people living with a terminal illness spend
their final weeks at home rather than in hospital or a hospice. The services facilitate patients’ safe and
timely discharge from hospice or hospital to their homes, as well as providing a short package of care
post-discharge.

Further information:

We are happy to provide further information to support this consultation. For more information, please
contact:

Susan Lowes
Policy & Public Affairs Manager, Scotland
Marie Curie
14 Links Place
Edinburgh EH6 7EB
Phone: 0131 5613902
Email: susan.lowes@mariecurie.org.uk
Follow us on Twitter @MarieCurieSCO

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