Anne's Law and Health and Social Care Standards consultations: analysis of the responses

Executive summary

Introduction

This report contains a summary of the responses to two consultations (Parts 1 and 2 of Anne's Law):

• Part 1: Consultation on Strengthening the Health and Social Care Standards to support people who live in adult care homes to maintain family and friendship connections
• Part 2: Consultation on Proposals for Delivering Anne's Law: supporting people who live in adult care homes to maintain family and friendship connections

In Part 1, the Scottish Government is proposing to strengthen the Health and Social Care Standards to enable people who live in adult care homes to have rights to see and spend time with the people who are important to them. The Health and Social Care Standards set out what people should expect when experiencing health, social care, or social work services in Scotland. This is in advance of the legislation planned to be introduced as Anne's Law under Part 2 of the consultation.

The respondents and the responses

In total, there were 156 Citizen Space responses to Part 1 of the Consultation, 127 (81%) of these responses were from individuals and 29 (19%) were from organisations. There was one non-standard written submission.

There were 283 Citizen Space responses to Part 2 of the Consultation, 247 (88%) of these were from individuals and 35 (12%) were from organisations. There was one non-standard response provided.

The organisations that responded to Part 1 and Part 2 included care home providers, health and social care partnerships, local authorities, care home provider representative groups, professional representative organisations, academics, third sector organisations, and family representative groups.

There were also three engagement events held in September and October as part of the Part 1 consultation process and five for Part 2. The discussions at these meetings are summarised in Appendices 1 and 2. The summary tables are provided in Appendix 3.

The consultation was designed and delivered by the Scottish Government and PwC was subsequently appointed to conduct an analysis of the Consultation responses.

Overview of findings

Part 1: Consultation on Strengthening the Health and Social Care Standards to support people who live in adult care homes to maintain family and friendship connections

There was virtually unanimous support for the overall aim of the consultation, i.e., that people living in adult care homes should have the right to see and spend time with those who are important to them to support their health and wellbeing. Many of the responses referenced the extreme emotional distress experienced by their relatives in adult care homes who were not able to have visitors during periods in the pandemic. There were also many references to visitation rights as a basic human right and the need to prevent restrictions recurring.

A third (34%) of the 151 respondents to Q2 stated that a new Standard is required, and a similar proportion (28%) said that the existing Standards should be strengthened. A quarter (25%) stated that both actions should be taken and 8% said "We don't need to do either". There was a view that the current guidelines are applied inconsistently. There was also a preference amongst many for legislation rather than guidance.

Unprompted comments on strengthening the Standards referred to quality of life and specific rights of access and communication.

When asked about the four suggested Standards, individuals (42, 37%) tended to select: "If I am an adult living in a care home and visiting restrictions are needed to prevent infection, my named visitor (and substitutes) are supported by the service to be fully involved in supporting my health and wellbeing at any time".

Organisations (11, 39%) tended to select: "If I am an adult living in a care home and visiting restrictions are needed to prevent infection, my named visitor (and substitutes) are supported by the service to continue to see and spend time with me, as long as it is safe".

There was also a general view that the proposals should apply more widely than adult care settings. A range of settings were suggested, including hospitals, supported housing and children's homes. Many respondents stated that the proposals should apply in all settings.

Respondents suggest that the proposals would have a number of benefits, including quality of life for residents; protection of their human rights; and mental, emotional and physical health and wellbeing. Challenges include the need for all homes to apply the standards consistently and a perceived blame culture. The key risk was identified as the introduction of infections into care homes. Many, however, thought this risk was minimal given vaccinations, increased testing, and enhanced Infection Prevention Control. Similar themes were raised in the consultation workshops, with the need to promote awareness and the importance of the Standards being a common suggestion.

Part 2: Consultation on Proposals for Delivering Anne's Law: supporting people who live in adult care homes to maintain family and friendship connections

As with the Part 1 Consultation, respondents were almost unanimously in agreement with the overall aim of the consultation, i.e., that people living in adult care homes should have the right to see and spend time with those who are important to them in order to support their health and wellbeing. Again, the main reason was to protect the mental, emotional, and physical well-being of residents. Respondents emphasised the importance of quality of life and shared their personal stories. The majority of respondents thought that the right should be for both residents and visitors, although some of the organisations that participated expressed concerns over adult protection and whether there is a risk that some named visitors could exercise undue control.

The benefits, challenges and risks were similar to those identified in Part 1 of the Consultation. Again, there was a strong focus on quality of life as well as the support that family members can offer care home staff, by taking on some elements of care like feeding or washing, as many did prior to the pandemic. The impact of restrictions on residents with dementia was also noted. Challenges included compliance (from both the perspective of the care home and from families (i.e., on the use of PPE), a perceived blame culture and potential additional costs on care homes. Risks included the introduction of infection into the home (although many thought that this should now be minimal given testing and widespread vaccination) and potential ambiguity in the language of the legislation.

In terms of managing risk, there was a strong view that the residents' rights should be paramount. It was noted on many occasions that some visitors may test more regularly than staff. Other themes included: the need for individual needs assessment; for appropriate IPC measures and a partnership approach with the home.

Again, around three quarters of individuals and organisations suggested that the legislation should be applied more widely than adult care homes, including, as with Part 1, hospitals, children's settings and, as many noted "all settings".

Further comments on the proposals tended to relate to the importance of:

• The proposed Law, given the impact on the emotional, mental, and physical well-being of residents
• Early implementation of the Law

Respondents also took this opportunity to comment again on their own experiences of family members being isolated in care home settings over the course of the pandemic and to reiterate that a similar situation cannot arise again.