Palliative care strategy: consultation analysis

4. Consultation Responses

This report covers responses to questions in the three sections of the survey. Respondents shared a wide and diverse range of views with many offering detailed comments and suggestions. Some chose not to answer all of the questions. The first part of the consultation report summarises responses to the aims and underlying principles or ‘cornerstones’ in the draft strategy. It also covers wider comments relevant to the strategy as a whole.

4.1 Draft Strategy Overall

4.1.1 Draft Strategy Aims

• 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.

  Option	Total	Percentage (n=160)
  Agree	132	82%
  Disagree	2	1%
  Unsure / Don’t know	9	6%
  Not Answered	17	11%

A majority of respondents (82%) agreed with the overall aims of the strategy.

Many respondents recognised that palliative care is an active approach to person-centred care that can begin from around diagnosis of any life shortening condition. They pointed out that it is equally important when someone’s health starts declining. This often happens when people are living with frailty or neurological conditions. Some questioned “timely” in relation to palliative care saying this could be misunderstood. It might not lead to people receiving palliative care earlier.

Several respondents went on to say it is important to respond to the palliative care needs of the growing numbers of older people living with long term conditions, neurological conditions, multimorbidity, dementia and/or frailty over years. These people often need palliative care over years rather than months. People’s illness journeys are variable, uncertain and often unpredictable.

Use of the term “equitable access” was a common concern. Respondents said “more equitable” was too vague and unmeasurable. A few commented that saying the strategy will lead to more “equitable access” to palliative care will have little impact if people are not aware of what care and support they are entitled to receive. Another view was that palliative care should be “improved” or “enhanced” for everyone rather than focusing on equity.

Some respondents highlighted the challenges of delivering palliative care for rural and island communities. They suggested local solutions might be more realistic than aiming for a single approach. Several said people of all ages should be able to access 24-hour support at home wherever they live.

Several respondents stressed the importance of defining terms such as “general” palliative care and “specialist” palliative care services clearly. They wanted more information about who provides these services and how people can get them. One respondent said that palliative care is about a whole person or holistic approach to care, not just a name that describes specific services.

Unpaid carers have a crucial role that needs to be recognised along with actions to support them. Respondents also emphasised that families and carers, community networks and wider support should not become substitutes for gaps in health and social care services.

Faith-based organisations and belief groups highlighted the need for holistic care to provide spiritual, emotional, and pastoral support and welcomed their inclusion in the strategy.

4.1.2 Draft Strategy Cornerstones

• Working together to provide the care that’s right for each adult or child, their family and carers.
• 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.

  Option	Total	Percentage (n=160)
  Agree	119	74%
  Disagree	8	5%
  Unsure / Don’t know	15	10%
  Not Answered	18	11%

A majority of respondents (74%) agreed with the draft strategy’s cornerstones. The cornerstones include evidence supporting changes in how palliative care is experienced, understood and delivered. There were many comments and questions about what the cornerstones meant and how they connected with the strategy outcomes and actions. Some comments overlapped with what was said about the strategy aims.

Some respondents agreed that a “whole-system population health approach” to palliative care is important. However, others said people and communities should be at the heart of palliative care. There were multiple comments about the importance of including both health and social care in a balanced way. Using terms referring to “health” does not do that.

Respondents highlighted data gaps that make population palliative care data incomplete. This includes limited data from independent hospices and data about ethnicity and diversity. Several people expressed concerns about the ethical use, secure storage, and sharing of their personal health data across the various organisations involved in delivering palliative care.

The survey included an open question about equality and diversity and all of those responses are reported together (4.3). Comments about leadership are summarised with those on outcome two (4.2.2).

4.1.3 Further Responses to the Draft Strategy

• Respondents felt that the strategy was ambitious, but also highlighted areas of palliative care that require improvement. Several acknowledged the work that had gone into developing the draft strategy. They noted that it is well researched and supported by a range of evidence.
• Some respondents expressed concerns about the length, structure, and readability of the draft strategy. They recommended making it clearer and more concise, with content tailored to different audiences. A shorter, more accessible summary could improve understanding, and the strategy should include clear, measurable outcomes and actions. Several respondents had concerns about the feasibility of achieving the strategy’s aims within a five-year timeframe. Many commented on the lack of a detailed delivery plan with defined responsibilities, accountability, milestones and monitoring.
• Workforce challenges were raised by some respondents as having an impact on implementation of the strategy. Some recommended that the delivery plans be joined up with wider workforce planning across adult health and social care. They said that national and local planning has to make sure there are enough staff with the right training and skills to meet the growing demand for palliative care.
• Some commented on the need for an increase in the number of staff with the necessary skills and experience to provide paediatric palliative care.
• Several respondents wanted the palliative care strategy to refer to other relevant Scottish Government strategies and action plans. The palliative care strategy should be integrated fully with these policies.

4.2 Draft Strategy Outcomes

This section of the report covers responses to the questions about each outcome and its related actions in the draft strategy. Agreement with an outcome is followed by a summary of comments from respondents to the survey questions and the additional email responses.

4.2.1 Draft 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.

Most respondents (71%) supported this outcome and its actions. Some added further comments in an open question later in the survey.

Respondents agreed on the importance of enabling people, families and communities to support themselves and each other. Several noted a lack of guidance on how to put this into practice. Some wanted a clearer definition of what “community” means when talking about community action and support. More could be done to recognise the role of families and offer support for carers. This includes training for people who want to help others in their community. NHS 24 was seen as a good first point of contact for people and families by some respondents.

Many respondents saw the Scottish Partnership for Palliative Care (SPPC) as part of the national palliative care infrastructure. It has a valued coordinating role across sectors. Several pointed out that many other national and local third sector and charitable organisations provide resources and support as well.

Respondents found some actions for this outcome unclear. They questioned terms like “work with” or “support” and “widening access to community-led education”. Others felt this section should address inequalities linked to social factors and reflect experiences of older people and carers.

Benefits Assessment for Special Rules in Scotland (BASRiS) was viewed as a good way to offer financial support throughout Scotland. Some said the application process could be simplified. Improving wider social support, such as housing and home adaptations is important too. Respondents were concerned that people may not ask for help or financial support. This can be due to uncertainty about what could happen with their condition or not being aware of what care and support is available. They said that some people do not know how to get help or who to ask.

Many respondents said NHS Inform offers good public information. Some had concerns about accessibility of online information. Others said there is a focus on health with not enough social care content. The Right Decision Service from Healthcare Improvement Scotland has more facing public information relevant to palliative care. Respondents suggested that information could be made more widely available. This could be printed versions of digital resources, easy-read, large print, Braille, and multiple languages including British Sign Language. Information could be provided in GP surgeries or public spaces like libraries and community centres.

Several respondents highlighted cultural and societal norms that continue to make open discussions challenging. Schools and other educational settings could contribute to normalising conversations about life shortening conditions, death, dying and bereavement. Some suggested a national public information campaign could help improve understanding of what palliative care is, what it can offer people and why earlier palliative care makes a difference. This might help individuals, families and carers know when and how to ask for more care and support.

4.2.2. Draft Outcome 2

Leaders, stakeholders and delivery partners will work together in partnership, with clear roles and responsibilities, to make sure there is reliable and effective planning, delivery, accountability and improvement of palliative care services and wider support.

Many respondents (67%) supported this outcome and its actions. Leadership should be strengthened at all levels to make sure the strategy is embedded in practice and deliverable. Voices of those with lived experience must be heard and used to inform planning and delivery of palliative care services.

Respondents had concerns about inconsistent and ineffective approaches to accountability, planning, leadership and governance for general palliative care and specialist palliative care services.

Views on a Managed Care Network (MCN) for each Health Board area in Scotland were mixed. Some saw the MCN as a key part of planning and delivering person-centred services. All stakeholders and staff, as well as local community groups, should be involved and their contributions valued. Some respondents wanted there to be dedicated business and data support for the MCN and clear responsibilities including an accountable executive lead in all Health Board areas. Allocated time for staff to contribute to an MCN matters too. They thought each Health Board area should have a local palliative care plan and report on its delivery.

A number of respondents said developing robust national guidance to improve planning and commissioning of independent hospice services for adults and children is essential. Others reported that NHS palliative care services had struggled to compete for funding when their role in delivering service priorities was not recognised. Many said palliative care in the community will depend on better support for social care. Some commented on more support for district nurses, general practitioners, and other members of community health and care teams as well.

Respondents supported specialist palliative care services being part of Health Board delivery plans and performance monitoring. Improving availability and quality of palliative care matters for people in hospital as well those at home. An “integrated specialist palliative care service” could be explained better.

Many respondents were unclear about an innovation network, its relationship to existing networks and role in improving experiences of care and service delivery.

National and local reports should be published in ways that are understandable to the public.

4.2.3. Draft 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.

Many respondents (69%) supported this outcome and its actions.

Respondents highlighted the importance of gathering and sharing meaningful data. Data collection needs a clear purpose and relevance. Many noted that there should be defined responsibilities and accountability for gathering and using data. National population data should include third sector organisations such as independent hospices. Access to relevant local data can support service planning and monitoring.

Several respondents wanted social care data to be included in local and national population data because that is part of health and social care integration. Known data gaps for children and young people and for minority communities need addressed. It is vital to improve our understanding of people’s experiences of care. This should drive future developments.

Templates for service delivery outcomes agreed at a national level were supported as a way to help standardise reporting across the country. Respondents suggested that these need to cover NHS, social care, third sector and independent service providers. Respondents also supported development of a “minimum data set” that can be used for all specialist palliative care services for adults and one for paediatric palliative care. One response emphasised the importance of involving organisations responsible for national health and social care standards (Healthcare Improvement Scotland and the Care Inspectorate).

Some respondents recommended that data reporting should reflect variation in service arrangements that is appropriate such as in rural areas where there are limited specialist palliative care services. Several pointed out that it may be challenging for overstretched staff to complete service outcome templates or do other data collection.

There were questions from several respondents about how changes can be measured. Baseline data may not be available to show what improvement work is achieving. It is important to capture unmet needs as well as monitor services delivered. Data should be shared across Health Boards and for all places of care (community and hospitals).

4.2.4. Draft 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.

Many respondents (68%) supported this outcome and its actions. Further comments on this topic were included in the open question about earlier palliative care for more people of all ages.

Many respondents agreed that adults of all ages who can benefit from palliative care should be identified earlier. More people, families and carers can be helped by receiving general palliative care and specialist palliative care services sooner.

Early identification of people with unmet palliative care needs may increase the health and care demands on an already stretched system. Some respondents also said that the strategy outlines the importance of early access to palliative care, but it does not provide a pathway to early support or explain clearly what that means.

Proactive approaches for identifying older individuals who may be living with frailty at home, or in their care home, were recommended. More of them could be offered comprehensive assessments and person-centred care plans.

Several respondents wanted the strategy to do more to show the important role of general practitioners, primary care teams, care home staff, and mental health services in identifying people with palliative care needs and providing early support. Some also said that offering palliative care should be based on people’s needs, rather than being prognosis driven. Individuals’ preferences and values should be listened to so that palliative care is respectful and responsive to the individual and what matters to them.

Some thought tools that might search primary care records to screen for people not yet receiving palliative care could be useful. This would require investment and improvements in digital infrastructure, staff training and public support. There were comments about screening for emotional and psychological needs not just physical health problems.

Many respondents supported a 24/7 telephone support service for people and their families and carers. They thought this should be available regardless of where people live. Some said that the current systems are not “fit for purpose” due to things like long waiting times to get help. Others recommended integration of a national telephone service with existing locally delivered telephone advice services. Local Flow Navigation Centres could help people get help more rapidly and improve continuity of care at home.

4.2.5. Draft 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.

Many respondents (69%) supported this outcome and its actions.

Respondents agreed that more people should be offered person-centred future care planning. This was seen as important for people with dementia or neurological conditions, such as motor neurone disease, from around the time of diagnosis. There were several comments about how future care planning should happen. Future care planning should be inclusive and suitable for everyone, including those from ethnic minority and LGBTQ+ communities. Future care planning is about having conversations over time. Discussions can happen at home or in hospitals. Talking about planning ahead can involve health and social care staff, social workers and care home staff. These staff work together as well as with the person and their family to create and update plans.

A digital future care plan linking with wider health and social care records would be welcomed by many respondents. They said that future care plans can improve continuity of care particularly at a time of crisis or an emergency situation. These plans should be available to appropriate health and social care staff providing care including staff in hospices and care homes. Community staff such as pharmacists wanted to see these plans too. Some said care plans should capture the distinctive needs of children and families. People should be able to have their own plan in hard copy as well as digitally.

There were concerns from respondents about digital communication between services, and how to make sure information is shared more easily across systems that are not well connected or easy to use. Some respondents were worried about confidentiality and keeping personal information secure. There needs to be clear responsibility for reviewing future care plans and keeping them up to date. Staff in hospitals may not be able to view the full Key Information Summary (KIS). There was wide support for education and training to make sure health and social care staff are confident and able to have future care planning conversations.

4.2.6. Draft Outcome 6:

Quality and experiences of care around dying and bereavement support are improved for adults and their families and carers in all places of care.

Most respondents (75%) supported this outcome and its actions. Many comments were similar to those for the other outcomes about delivery of palliative care. Respondents were clear that person-centred conversations with people, families and carers and shared decision-making is just as important when someone is dying.

There were several other comments about medicines when someone is dying, guidance for staff and public information. It is important to have “just in case” medicines available when an adult or a child is dying at home. One respondent highlighted the importance of having enough trained nurses available to give these medicines. Another said that more Scottish Ambulance Service clinicians can now support people at home and give “just in case” medicines. National guidelines about “just in case” medicines can help with training staff. One added that each Health Board has its own paperwork for these medicines which could be standardised. Several said that people and their families would like more information about the medicines used to manage symptoms when someone is dying.

An updated version of the national public information leaflet ‘What to do when someone dies in Scotland’ was welcomed. Some said it was difficult to get copies of the previous leaflet. Social care and social work staff should have copies of the leaflets so they can give them out in people’s homes, care homes, and other community settings. Others thought this information should be in a range of languages and formats (audio, written, video).

Several respondents welcomed education resources on bereavement care for health and social care staff that are being developed by NHS Education for Scotland. Resources should include emotional and spiritual aspects of bereavement and grief that happens before a person dies. Others recommended supporting a wide range of health and social care staff, social workers and third sector staff to use them.

4.2.7. Draft 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.

Many respondents (63%) supported this outcome and its actions. They welcomed recognition of the distinctive needs of babies, children, young people and their families in the strategy and actions to address these. Children also need to be identified earlier for palliative care.

Several respondents welcomed a national approach to planning and commissioning paediatric palliative care services across Scotland. One asked if this will reflect the different responsibilities of charities, NHS Boards, Health and Social Care Partnerships, and local authorities.

Respondents said developing a national specialist paediatric palliative care service available 24/7 could help children and their families receive expert care at all times. This would support health and social care staff to deliver paediatric palliative care in all places of care, particularly in rural and island communities. One pointed out that enough local NHS and social care staff support is essential for a 24/7 service at home.

Improving support for young people living with life shortening conditions as they move from paediatric to adult services was welcomed as this could reduce gaps in care. The GIRFE (Getting It Right for Everyone) model and toolkit could support person-centred care and ongoing support for these young people and their families. One respondent also said that there will be a Scottish Government national transition strategy for all young people. Others agreed that adult specialist palliative care services, including independent hospices, could help support these young people, depending on their needs.

Some respondents thought that national paediatric palliative care standards would support more consistent and measurable quality of care for children and their families. Several said standards need to be agreed by a multi-agency group of all service providers and people who receive services. They added that there should be clear accountability for Integration Authorities and Health Boards. Implementation should be monitored properly.

A few respondents commented on the importance of a process for ethical clinical review of decision-making in paediatric palliative care. However, one said that Health Boards or other care providers are responsible for this so there may not be value in a national approach.

4.2.8. Draft Outcome 8:

Employers, professional bodies and education providers will make sure that staff who deliver palliative care are trained, skilled and supported.

Most respondents (75%) supported this outcome and its actions. Many emphasised that education for all staff should be given higher priority. A well trained workforce across the NHS, social care and third sector organisations is key to high quality palliative care for people of all ages.

It was clear from the responses that the Scottish Palliative Care Guidelines are well known and used. Some thought they could be strengthened by including more resources for social workers and social care staff. Others pointed out that symptom management includes emotional, psychological and spiritual care. Resources for paediatric palliative care should be part of the national guidelines. Any nationally developed guidance should be accessible to all health and social care staff wherever they work. The guidelines digital application (on Right Decision Service) already does this, but not everyone knows about it.

Respondents welcomed the development of an online learning hub to give a single point of access to relevant education and training resources for all health and social care staff delivering palliative care. This would let staff, including volunteers, update their knowledge and skills in a convenient and accessible way. Some noted the importance of supporting staff to access training and giving them protected time for this. Education providers could be encouraged to promote the new learning hub. There was strong support for the learning hub to link to the existing Palliative Care Education Framework for health and social care staff.

Specialist palliative care services, including independent hospice services, saw themselves as having a key role in education and training other staff. So did other respondents. The Scottish Ambulance Service programme is a good example of services working together. Online learning networks such as Project ECHO (Extension of Community Health Outcomes) already offer accessible learning opportunities that respondents value. They also foster a supportive community of practice in palliative care for adults and for children.

Several respondents said that all pre-registration health and social care staff should have appropriate education and training for future roles involving adult or paediatric palliative care. Other learning opportunities were suggested like placements for health and care staff in hospices, with community teams or in other places of care. Graduate apprenticeship models are a potential pathway into degree level study for specialist nurses. Interprofessional education and cross-sector workforce development are particularly relevant for palliative care.

4.3 Equality and Diversity

Respondents were asked if they thought the actions in this strategy can improve the experiences of people with different personal characteristics and circumstances.

Just under half the respondents (48%) agreed that the strategy could address challenges faced by some groups in receiving the right palliative care and care around dying for them. A quarter were unsure or did not know.

Respondents welcomed recognition of the wide range of factors such as age, sex, gender, disability, ethnicity, faith or belief, culture, poverty, personal characteristics and location that affect people’s experiences of living or dying with life shortening conditions. However, several said the actions are at a high level and do not offer sufficient reassurance that there will be a measurable impact on existing inequities. They emphasised the need for more detail about specific barriers people experience, how they will be addressed and who will be responsible for taking action.

Some emphasised that inclusive palliative care should extend to marginalised groups such as LGBTQ+ individuals, ethnic minorities, people with severe mental illness, intellectual disabilities, non-verbal individuals, and people who are homeless or in prison.

Several respondents commented that older people are often overlooked. People may assume that declining health from untreatable conditions is an inevitable part of ageing. Older individuals from certain minority ethnic groups tend to experience poorer health outcomes than the population as a whole. One noted that rural and island communities are ageing at a faster rate compared to urban areas.

4.4 Definitions and Language

An open question asked for views on terms used in the draft strategy. Across the UK, definitions and language are changing. In particular, it is vital to explain palliative care better. The term “care around dying” is used instead of “end of life” care in the strategy because the older wording causes confusion with palliative care. Palliative care can start from around the time a life shortening condition is diagnosed and is important long before someone has a last illness and is dying. Future care planning is a different approach to planning ahead that has replaced advance or anticipatory care planning in Scotland and other parts of the UK.

Many respondents agreed with the need to shift public perceptions of palliative care. They said that most people in Scotland still associate palliative care with end of life care and often see the two terms as interchangeable. That leads to many people believing that palliative care is only relevant or available to them when death is close.

Several respondents felt that the change to “care around dying” requires further explanation. People need to understand the decision to move away from the widely used term “end of life care” in the strategy. Some said it will take time for health and social care professionals, and others, to become comfortable and familiar with this new term. The strategy needs to be clearer that “care around dying” includes people close to someone who is dying.

There were concerns from respondents about what is meant by “terminal illness” in relation to palliative care. For example, Parkinson’s disease is a progressive condition but is rarely described as a “terminal illness” because people can live for many years following diagnosis. Some commented that it is not clear to people when palliative care becomes available to someone with a “terminal illness”.

Respondents supported the move to wider future care planning. Several said the description of future care planning should highlight that it is a process of ongoing conversations, with shared understanding of a person’s views and what matters to them. Social care staff as well as health care staff are involved in future care planning so that should be clarified.