Palliative Care Strategy: Palliative Care Matters for All
Published: 19/11/2024
The Scottish Government Palliative Care Matters for All strategy has been developed to improve equitable access to palliative care throughout Scotland, to raise the profile of these services and provide education on the importance of palliative care and its place from an individual’s diagnosis through to care around dying. This also includes bereavement support.
This consultation seeks views on eight identified outcomes which describe what good looks like with respect to palliative care services in Scotland. Below is a short explanation of the strategy, and Community Pharmacy Scotland’s submitted response to this consultation.
The population in Scotland is rising and the proportion of older people is increasing at an even faster rate. The need for palliative care is increasing and we must prepare for this. Making best use of the services available and identifying and care planning for individuals requiring palliative care early will reduce the extra pressure on the NHS and ensure these individuals are accessing and receiving the best care for their needs at that time.
Community pharmacies play a vital role in delivering palliative care, so we have chosen to respond to the consultation to ensure that our members’ interests are represented. Engagement of all stakeholders is imperative in delivering this strategy successfully.
The full consultation can be accessed here.
-
The aims of the strategy are that, by 2030:
adults and children in Scotland have more equitable access to well-coordinated, timely and high-quality palliative care, care around dying and bereavement support based on what matters to them, including support for families and carers.
Scotland is a place where people, families and communities can support each other, take action and talk more openly about planning ahead, serious illnesses or health conditions, dying and bereavement.
Adults and children have opportunities to plan for future changes in their life, health and care with their families and carers.
Answer: Agree
-
We used four ‘cornerstones’ as the foundations for change and improvements in palliative care policy, service delivery and public involvement. These are:
Working together to provide the care that’s right for each adult or child, their family and Taking a whole-system population health approach using data and people’s experiences.
Ensuring equity and equality of access to palliative care for anyone who needs it.
Leadership across health and social care systems and with wider delivery partners, including third sector organisations (charities).
Answer: Agree
-
Using a whole-system approach to deliver optimal palliative care will need to involve all stakeholders, including community pharmacy teams. To enable seamless transfer of care between services, an efficient method of sharing of information between professionals needs to be established, with appropriate access extended to all involved in the care of the patient.
Community pharmacy palliative care services are currently commissioned locally, with clear variation between Health Boards being present as a result. With uniform ‘service delivery’ in mind as a key cornerstone in improving Scottish citizens’ experience of palliative care, we would recommend that these local services are standardised using a ‘Once for Scotland’ approach. This will make clear to patients, their families and other professionals what they should expect from a pharmacy team delivering palliative care support.
-
Outcome 1: People have the understanding, information, skills and confidence to support themselves and others to live well with serious illnesses or health conditions; to plan for the future; and to support each other through dying and bereavement.
Proposed actions:
Take forward work across relevant policy areas to improve the wider experiences of people receiving palliative care and care around dying; remove barriers to access; and maximise support, including areas related to children and young people, equalities, justice, fair work, housing and tackling poverty.
Explore ways to promote access to financial benefits for adults or children with serious illnesses or health conditions and increasing health and care needs under the Benefits Assessment for Special Rules in Scotland (BASRiS) application process through improved public information and professional education and guidance.
Work with agencies, statutory and third sector organisations responsible for housing and services for people who are homeless or vulnerably housed to develop and promote ways to enable adults and children living with serious illnesses or health conditions to access the social, practical and financial assessments and support they need.
Collaborate with NHS 24 and wider partners to make sure the NHS inform website provides relevant, up to date and accessible public information about future care planning, palliative care and care around dying for adults and children, families and carers, including links to support organisations and resources for people from diverse groups and communities.
Support the Scottish Partnership for Palliative Care (SPPC) to provide a sustainable, national infrastructure that enables statutory and third sector organisations, palliative care providers, staff, community groups and individuals to work together to promote understanding and awareness of living and dying with serious or life-threatening illnesses and serious health conditions; and to contribute towards empowering people to be more informed and equipped to plan ahead and support each other through serious illness, dying, death and bereavement.
In partnership with the third sector, widen access to community-led public education opportunities which provide knowledge, skills, resources and training to help more people be comfortable and confident in supporting family, friends and people in their local community when someone is dying, caring or bereaved.
Work with Integrated Joint Boards (IJBs) and Health and Social Care Partnerships (HSCPs) to explore options for their strategic plans for palliative care to recognise and work collaboratively with local community groups, networks and projects that offer support for adults with serious illnesses; children and young people with serious health conditions; and their families and carers.
Answer: Agree
-
Evidence from individuals with experience of Just In Case boxes has suggested that more patient education is required upon supply. Community pharmacists are well placed for this due to the contact they have with patients and their representatives. Providing education on the contents of the Just In Case box and how to use these medicines will allow for greater care around dying.
More detailed information on the contents could be put on NHS Inform.
-
Need for community pharmacists to gain role-based access to patients records/ care plans to support whole system approach. As mentioned in our answer to question 2b, we would call for a National standard for Community Pharmacy Palliative Care Services, and adequate funding/ resource to ensure delivery.
Community pharmacy teams would benefit from improved education and training around palliative care.
-
Outcome 3: National and local leaders will have access to relevant data to inform planning and delivery of services; and will put in place improved ways to monitor and evaluate the outcomes and experiences of children and adults receiving palliative care, as well as their families and carers.
Proposed actions:
Work with Public Health Scotland, Health Boards, HSCPs, and other key partners, including paediatric palliative care planners and service providers, across all sectors to improve the quality and range of palliative care data collected, analysed and reported. Such data can be used to inform improvement, experiences, and delivery of palliative care for adults and children, families and carers, and includes:
Updating and improving the existing adult palliative care population data reporting systems; and providing access for service planners and health and care staff.
Developing a national approach to data collection on paediatric palliative care services for babies, children and young people (0 -18 years) and developing a new dashboard that can be accessed by paediatric palliative care service planners, and health and care staff.
Working with HSCPs and Health Boards to develop a data template that supports them to collect, analyse and report high quality data on general palliative care and specialist palliative care services delivered to adults, children and young people for service planning and improvement, which includes user experiences in all places of care.
Development of a Scottish minimum data set for all adult specialist palliative care services.
Development of a Scottish minimum data set for all paediatric and neonatal specialist palliative care services and transitions.
Explore evidence based and emerging co-design approaches to hearing and measuring people’s experiences of palliative care, care around dying and bereavement support in palliative care for all places of care, and establish a consistent national approach to help improve these experiences.
Answer: Agree
-
N/A
-
Outcome 4: Adults with serious or life-threatening illnesses will be identified earlier and be able to access general palliative care and specialist palliative care services, whenever and wherever needed.
Proposed actions:
Work with Healthcare Improvement Scotland (HIS) to improve guidance and promote improvements in use of evidence-based tools to support proactive identification and review of adults with unmet palliative care needs, their families and carers, by staff and teams working across health and social care in all HSCPs and Health Boards.
Work with NHS National Services Scotland (NSS) and HIS and digital science experts to explore further development and implementation of national health records screening tools to improve identification of adults with serious or life-threatening illnesses for earlier palliative care and future care planning.
Explore viable options with NHS 24 and other delivery partners to provide a 24/7 national palliative care advice line (via the 111 system) for patients, families and carers that reduces delays in access to urgent primary care and social care and connects with locally delivered palliative care telephone helplines and services.
Support collaborative working to promote inclusion of palliative care and care around dying in service planning and delivery for people with one or more long term health conditions.
Support innovative models of care and consider options for service developments and partnership working to increase equity of access to adult specialist palliative care both in-hours and out-of-hours in all Health Boards and HSCPs, including a specific focus on people who have more barriers to accessing the specialist palliative care they need.
Explore options with Health Boards and HSCPs to make sure there is consistent access at all times (24/7) to specialist clinical care from a consultant in palliative medicine and from senior nurse specialists whenever a person is receiving inpatient hospital or community hospital specialist palliative care, including contractual arrangements to support rural and island Health Boards.
Work with Health Boards, HSCPs and third sector organisations to improve access to urgent palliative care services in the community that can reduce avoidable hospital admissions and shorten inpatient stays, and provide more effective, timely admission processes for those needing hospital care. This includes improving access to specialist palliative care advice in hospital and at home within wider national and local work on unscheduled care and early hospital discharge.
Work with Health Boards, HSCPs and third sector organisations to support improved provision of professional-to-professional specialist palliative care clinical advice lines, ensuring these are available 24/7 in all parts of Scotland, so that other health and care staff providing palliative care, including the Scottish Ambulance Service, can access specialist palliative care advice at all times.
Work with Health Boards, HSCPs, third sector organisations, other delivery partners, and community groups to improve palliative care, care around dying and bereavement support for people from minority communities and other groups who face barriers to accessing palliative care or who need flexible approaches tailored to their health conditions, situation, personal circumstances, values and preferences.
Answer: Agree
-
Some of these actions have been successfully addressed in Fife and NHS Highland.
Their accessibility within the community makes pharmacies uniquely placed to counsel patients and their families and to connect with palliative services relevant to their needs at the time.
Role-based access to records is imperative to deliver this outcome and may avoid unnecessary referral journeys.
-
Outcome 5: Adults living with serious or life-threatening illnesses and children with serious health conditions will be offered person-centred future care planning involving their families and carers, and care plans will be recorded and shared using national digital systems.
Proposed actions:
Support a national partnership programme for future care planning, overseen by the National Future Care Planning Working Group, that is person-centred, inclusive and takes a ‘Once for Scotland’ and ‘digital’ approach to development and delivery for children, young people and adults whose life, health or care may change, and which is suitable for all places of care.
Continue to work with NHS Education for Scotland (NES) Digital, other national organisations and partners to develop and implement a national electronic urgent and emergency care plan for health and social care accessible to staff working in the community, NHS unscheduled care services and hospitals in all Health Boards, starting with health care staff and extending to social care staff, care homes and independent hospices.
Continue to work with NES Digital, other national organisations and partners to develop and implement a national electronic hospital urgent care plan to improve treatment and care during a single hospital admission that connects digitally with community urgent and emergency care plans.
Continue to work with NHS Education for Scotland, other national organisations and partners to develop and deliver national education and implementation resources on future care planning for use across Scotland.
Promote future care planning across all sectors and involve a wide range of stakeholders in development and delivery including members of the public, adults, young people, families, parents and carers, minority groups, patient support groups and third sector organisations, and to develop accessible and inclusive resources and information about future care planning with them.
Answer: Agree
-
In order to support patients, families and other professionals in future care planning, information sharing (as appropriate) with community pharmacies is key.
-
Outcome 6: Quality and experiences of care around dying and bereavement support are improved for adults, their families and carers, in all places of care.
Proposed actions:
Oversee an update to the national guidance on Care around Death and work with Health Boards and HSCPs to make sure it is implemented as best practice in all places of care in Scotland.
Work with Health Boards , HSCPs, primary care teams and pharmacy services to promote timely provision and use of ‘just in case medicines’ for adults dying at home and residents in care homes and improve staff education and public information.
Work with HSCPs and Health Boards to promote and develop effective models of urgent palliative care able to provide rapid access to coordinated health and social care support for adults dying at home, their families and carers.
Work with Scottish Ambulance Service and NHS Education for Scotland to ensure palliative care continues to be part of core training and professional development for ambulance clinicians.
Oversee an update the public information leaflet “When someone has died – information for you” with NHS Education for Scotland and other partners, and promote its use along with additional local information through Health Board Bereavement Leads, HSCPs, and other organisations, including NHS Inform.
Continue to champion, co-ordinate and work in partnership with key stakeholders to ensure compassionate advice, resources and support are available for people experiencing bereavement, following the death of an adult with a serious or life-threatening illnesses, or with a child who has a serious health condition, and explore improvements to bereavement care.
Work with NHS Education for Scotland and other partners to develop a new education and training resource on bereavement care for staff across health and social care that includes staff support and spiritual care as part of the Support Around Death resources.
Answer: Agree
-
As discussed previously, more information for patients around the medicines in Just in Case boxes would be welcomed
Some community pharmacies are commissioned locally to hold stock of particular palliative care medicines, but visibility of which sites hold what stock can be poor, particularly across Health Board boundaries. Implementing a National Standard for Palliative Care services in Scotland for community pharmacy would solve this.
Bereavement training and broader palliative care education is important for pharmacists and their wider teams to have access to.
-
Outcome 7: Babies, children and young people living with serious health conditions, and their families and carers, will experience improved support as their distinctive needs are recognised and addressed by paediatric palliative care, including care around dying or as they transition into adult services.
Proposed actions:
Work with key partners to develop a national approach to service planning for all paediatric palliative care, through a multi-agency steering group, to ensure children and families across Scotland have access to the services they need, wherever and whenever these are required, and to ensure that these services are equitable.
Work with CHAS and Health Boards to review current models and develop a national specialist paediatric palliative care service available at all times (24/7) to meet the needs of children, families and staff across Scotland in all places of care.
Support and develop improved transitions for young people with serious health conditions based on Getting It Right For Everyone (GIRFE) practice model, and the co-designed GIRFE ‘team around the person’ toolkit for young people in transition from GIRFEC (Getting it Right for Every Child) to GIRFE.
Draw on best practice models to develop and agree paediatric palliative care standards to children and families across Scotland have equitable access to high quality general and specialist paediatric palliative care services wherever and whenever these are required.
Explore options for a national approach to providing ethical clinical review of decision making in paediatric palliative care.
Answer: Agree
-
N/A
-
Outcome 8: Employers, professional bodies and education providers will make sure that staff who deliver palliative care are trained, skilled and supported.
Proposed actions:
Work with Healthcare Improvement Scotland (HIS) to ensure there is sustainable management, updating and extension of the Scottish Palliative Care Guidelines as recommended best practice for symptom management across Scotland on the Right Decision Service; and explore options to develop and include Scottish paediatric palliative care guidelines.
Work with NHS Education Scotland (NES) to develop a designated online learning space readily available to all health and social care staff who deliver palliative care to adults, children and young people that provides a single point of access to relevant training and education resources on palliative care, care around dying and bereavement support.
Work with NHS Education for Scotland (NES), statutory and third sector organisations, and education providers to support and enable local and national education and training for health and care staff to equip them to have sensitive and effective person-centred conversations with adults or children, families and carers, that are central to future care planning, palliative care, and care around dying, including NES Having Realistic Conversations resources.
Work with NHS Education for Scotland (NES) and third sector palliative care education providers to promote and develop online learning opportunities and networks for health and social care staff across Scotland such as Project ECHO.
Work with universities and further education colleges that provide pre-registration courses and undergraduate education programmes to enable all health and social care staff (including doctors, nurses, pharmacists, allied health care professionals and social workers) and to receive a level of adult or paediatric palliative care education appropriate to their roles.
Encourage HSCPs and Health Boards to employ palliative care practice educators to support the sustainable delivery of palliative care education and training in line with the NES/SSSC Palliative Care Education Framework and work collaboratively with adult and paediatric palliative care specialists offering education and training.
Answer: Agree
-
All Health Boards should have a palliative care specialist pharmacist contact to support community pharmacy teams with training, materials, advice and support.
-
N/A
-
Living well with serious illnesses and health conditions, dying and loss are universal experiences affecting everyone.
Answer: Yes
-
N/A
-
Many people don’t understand that palliative care helps adults with serious illnesses or children with serious health conditions to live as well as possible. Some people think they can only get palliative care in the last weeks or days of life. In fact, some adults and children can benefit from palliative care over many years.
Answer: Yes
-
N/A
-
How adults and children, their families and carers experience living and dying with different illnesses; access health and care services; and use their own community support networks is affected by their health conditions, situation, location, culture and personal circumstances. These include:
age
disability
race or ethnic group
religion or belief
gender
sex
sexual orientation
rural or island areas
socio-economic deprivation (poverty)
illnesses or health conditions
Answer: Yes
-
We believe that, subject to successful and uniform implementation, each group listed will experience an improvement in relation to palliative care services. With the particular actions relating to age mentioned above, it is possible that a larger relative benefit will be experienced by this particular group.
-
It is important to use consistent terms and language that everyone can understand.
Care around dying - care around dying means whole person care for an adult or child who is dying and in the last hours, days or weeks of their life, care after their death, and support with loss and grief for families and carers throughout this time and when they are bereaved.
Future care planning - future care planning means supporting adults and children, their families and carers, to think and plan ahead for changes in their life, care or health.
Palliative care for adults - palliative care is holistic care that prevents and relieves suffering through the early identification, assessment and management of pain and other problems – whether physical, mental health, social or spiritual.
Palliative care for children and young people - palliative care for children and young people is an active and total approach to care, from the point of diagnosis or recognition throughout the child’s life. It includes physical, emotional, social, and spiritual elements, and focuses on enhanced quality of life for the child or young person and support for their family.
Answer: Yes
-
N/A
-
N/A
This consultation seeks views on eight identified outcomes which describe what good looks like with respect to palliative care services in Scotland. Below is a short explanation of the strategy, and Community Pharmacy Scotland’s submitted response to this consultation.