Response to Palliative care matters for all: strategy consultation

Title of consultation: Palliative Care Matters for All: strategy consultation

Source of consultation: Palliative Care Matters for All: strategy consultation

Date: 10 January 2025

Who we are

1. The Equality and Human Rights Commission (‘the Commission’) is Britain’s equality and human rights regulator. Our human rights powers in Scotland extend to reserved matters. The Scottish Human Rights Commission has a mandate to promote and protect human rights in Scotland that fall within the competence of the Scottish Parliament.

How we have approached this response

2. We welcome the opportunity to respond to the Scottish Government’s consultation on a draft strategy for palliative care.

3. We consider that a new palliative care strategy should reflect relevant equality considerations and should ensure that the bodies responsible for delivering palliative care services do so in a way which meets the needs of all protected characteristic groups.

4. As such, we have focused our response on the requirements of the equality legal framework and have structured our recommendations around the defined outcomes in the consultation document.

5. We consider that there is an urgent need for the strategy to be published, and for those involved in delivery to maintain a focus on its implementation, given that many of those affected by its provisions will be in the final stages of life.

The Equality Act 2010

6. The draft strategy is likely to affect protected characteristics groups, particularly older and disabled people.

7. People who are terminally ill and in need of palliative care are likely to be disabled in line with the Equality Act 2010 definition of disability, set out in section 6 of the act.

8. The Equality Act 2010 prohibits discrimination, harassment and victimisation of protected characteristic groups. It also sets out legal requirements to protect disabled people from unfair treatment, including a requirement to provide reasonable adjustments for disabled people to equally participate in society alongside non-disabled people.  

9. Our recommendations in respect of the draft strategy serve to reflect the obligations of the act.

The Public Sector Equality Duty

10. The Public Sector Equality Duty (PSED), set out in section 149 of the Equality Act 2010, requires public authorities, in the exercise of their functions, to have due regard to the need to: 

• eliminate discrimination, harassment and victimisation that is prohibited under the Equality Act 2010 
• advance equality of opportunity between people who share a protected characteristic and those who do not  
• foster good relations between persons who share a relevant protected characteristic and persons who do not share it

11. This is known as the general duty. The broad purpose of the PSED is to advance equality by integrating consideration of non-discrimination, equality and good relations between and for protected groups into the day-to-day business of public authorities. For more detailed information, see our Technical Guidance on the PSED in Scotland.

12. There are Scottish specific duties (SSDs) to support implementation of the general duty and which apply to certain listed authorities in Scotland, including the Scottish Government and the public bodies responsible for the implementation and delivery of this strategy.

Impact assessments

13. Equality Impact Assessments (EQIAs), as well as being a requirement of the development of the strategy being consulted upon, must also guide the development of the new national and local strategies or plans referred to in the consultation document, such as a national guidance framework for local planning and commissioning of independent hospice services.

14. EQIAs should be carried out at the beginning of the development process to ensure that public bodies anticipate the needs of equality groups. An EQIA for the development of this strategy has not, as far as we are aware, been published or made readily available yet. This must be published in good time in order for the Scottish Government to meet their existing PSED requirements.

15. An EQIA should be updated periodically in order to ensure the strategy is being reviewed, as per the needs of the SSDs.

16. For further guidance on equality impact assessments and the PSED, please refer to our Technical guidance on the PSED in Scotland.

17. The Fairer Scotland Duty came into effect in April 2018 and requires certain public bodies, including Scottish Ministers, Health Boards and Integration Joint Boards (IJBs) to consider how to reduce inequalities caused by socioeconomic disadvantage when making strategic decisions.

18. This strategy and connected strategies must be subject to a Fairer Scotland Duty assessment, as per Part 1 of the Equality Act 2010.

19. We recognise that the draft strategy sets out several actions which seek to promote access to existing forms of financial and housing support, as well as ensure relevant and accessible information on other support and resources.

20. The Equality Act 2010 requires access to health care and other services on a non-discriminatory basis, and the PSED provides the framework for public bodies to ensure that this is the case. Proper compliance with the PSED and Scottish specific duties will ensure that particular barriers to access which are faced by protected characteristic groups, or those with an intersection of protected characteristics, can be mitigated.

21. Section 20 of the Equality Act 2010 also sets out the duty to make reasonable adjustments for disabled people. It is an anticipatory duty, so, in considering accessibility of information on support, listed bodies should be clear that they are meeting the reasonable adjustment duty.

22. In the interests of clarity for those responsible for implementing this strategy, as well as for those requiring palliative care services, we recommend explicit reference to the PSED and reasonable adjustments duty is included in this part of the strategy.

Data

23. While we acknowledge action by the Scottish Government and others to address evidence gaps and improve the equality evidence base in Scotland, we know that many organisations and public bodies still do not collect adequate equality data on those who access their services or engage with them. Our 2023 state of the nation report on equality and human rights, Is Scotland Fairer?, highlighted a lack of equality data on some critical issues, including health care.

24. The inclusion in the strategy of a commitment to work with Public Health Scotland, Health Boards, Health and Social Care Partnerships and other important partners to improve the quality and range of palliative care data collected, analysed and reported is therefore welcome. We agree that such data can be used to inform improvement, experiences and delivery of palliative care for adults and children, families and carers.

25. Integration Joint Boards, in their commissioning role, would also benefit from better collection and use of equality data.

26. These objectives are supported by the Scottish specific duties, which already require public bodies to gather and use equality data to assess and review new strategies, inform future equality outcome setting and report on progress on both meeting equality outcomes and mainstreaming the general equality duty.

27. These obligations should be reflected in the strategy, as legislative anchoring for the outlined actions.

Co-design

28. We acknowledge that under Regulation 4 of the Equality Act 2010 (Specific Duties) (Scotland) Regulations 2012, the Scottish Government have set an Equality Outcome to use co-design as a means of ensuring those with experience of inequality and exclusion have their voices reflected in public policy. The strategy’s commitment to exploring evidence-based and emerging co-design approaches to hearing and measuring people's experiences of palliative care furthers this commitment.

29. We agree with the concept of co-design. Successful co-design that involves disabled people and their organisations is also likely to have taken account of the duty to make reasonable adjustments.

30. Co-design can be a form of involvement, as defined in our Technical guidance on the PSED in Scotland. The process may assist relevant bodies to comply with the PSED general duty and develop a robust equality evidence base in order to comply with the duty to assess and review policies and practice. This duty applies to a ‘proposed’ new or revised policy or practice. Therefore, where an assessment of the impact is required, that assessment must be carried out before a decision is made on whether to apply the policy or practice. For this reason, we consider that the co-design work, which may provide evidence relevant to the equality impacts of a proposal as well as inform the detail of that proposal, should be done in advance of a strategy being published.

31. We recommend that co-design should inform national and local strategies or plans at the outset, and any review process which may result in amended strategies or plans.

32. Several of the Scottish Government’s proposed actions under these outcomes seem to reflect the ‘lived experiences and public views research studies’ findings attached to the consultation document. For example, including a specific focus on people who have more barriers to accessing the specialist palliative care they need reflects the finding that specialist palliative care services are offered less often and later for vulnerable groups with multidimensional health and social support needs. This includes people living with learning disabilities or severe mental illness.

33. Many of the barriers identified in the lived experience document and the consultation relate to the experiences of protected characteristic groups. We welcome both the evidence gathering and related development of actions as a means of addressing those identified inequalities.

34. We consider that any associated action plans to accompany the strategy, whether for use by Scottish Government, IJBs or palliative care service providers, should develop the current actions and produce target or outcome measures which are ‘SMART’: specific, measurable, achievable, relevant, and time-bound. In practice, this will mean identifying baseline indicators and the improvements expected as a consequence of identified actions.

35. In terms of monitoring, the Scottish specific duties provide a framework for ensuring the identified inequalities, where they pertain to protected characteristic groups, are being addressed. As mentioned earlier, an EQIA should be updated periodically, in order to ensure the strategy is being reviewed, as per the needs of the SSDs.

36. It is not enough, for example, to simply include a focus on addressing specialist care issues for disabled people. Where the current identified actions relate to protected characteristic groups, they should be developed to produce SMART outcomes, which are monitored as per the existing SSDs.

National electronic hospital urgent care plans

37. Should the Scottish Government pursue the introduction of national electronic hospital urgent care plans to help to ensure that important information about people’s needs moves with them, it should record any reasonable adjustments required for disabled people. This would assist the bodies delivering palliative care to meet the reasonable adjustment duty.

38. Outcomes 6 and 8 both refer to education and training resources, including palliative care education as part of relevant college and university courses.

39. All employees must have an awareness and understanding of equality and how it is relevant to their work. Any professional development programme must include training and support to ensure all employees, including commissioning and procurement professionals, have the knowledge, skills and confidence to take an equality-focused approach to their work.

40. The strategy is to have equality and non-discrimination at its heart, there has to be a focus on mainstreaming equality into all parts of the system. This will require leadership and an investment in all staff – decision-makers and those directly delivering services – so that they have access to the relevant equality training and support and are motivated to understand why paying attention to equality drives better outcomes.

41. The strategy should set out the commitment to ensuring robust equality training is part of the suggested training commitments currently listed. 

Questions and comments regarding this publication may be addressed to: Scotland@equalityhumanrights.com. We welcome your feedback.

For information on accessing one of our publications in an alternative format, please contact: correspondence@equalityhumanrights.com.

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