Anne's Law draft regulations: consultation report

Annex B: Care Home Visit and Interview Summaries

The care home visits provided a rich, detailed picture of how the draft regulations may work in practice. While some of the themes echoed points raised through the survey, residents, families and staff often spoke more broadly about their lived experiences of visiting arrangements, meaningful contact and the emotional impact of past restrictions. Their feedback was not limited to individual regulations, and many reflections applied across several parts of Anne’s Law.

For this reason, the following section presents a fuller thematic breakdown of what people told us during the visits. These themes draw together the issues that mattered most to residents and those who support them, including relationships, communication, consistency, and the day-to-day realities of visiting in care homes. Quotations are included where they help illustrate these themes. This section is intended to complement, rather than repeat, the regulation-by-regulation findings set out earlier in the report.

Summaries of feedback by Regulations

Regulation 2 - Identification of Essential Care Supporters

This section of the report outlines insights from interviews with care home residents, their family and friends, and care home staff in relation to Regulation 2: The Identification of an Essential Care Supporter. These insights are organised by theme.

Themes

Several key themes emerged from the consultation regarding Essential Care Supporters (ECS) in care home settings. These themes reflect the perspectives of residents, families, and care home staff, and highlight both the emotional significance and practical considerations surrounding ECS involvement. The findings have been grouped into the following themes:

Theme: The role and identity of the ECS

Explores perceptions of the ECS role, including their identity, relationship with the resident, and contributions to care and wellbeing.

Theme: Flexibility and accessibility

Explores the need for adaptable approaches to ECS roles, including varying numbers, emerging needs, and support for ECS with additional requirements.

Theme: Impact of connection and separation

Explores emotional and wellbeing impacts of separation from ECS, including potential for distress and mental health concerns.

Theme: Communication and collaboration

Explores the role of clear communication and collaborative relationships between care homes, residents, and ECS in building trust and reassurance.

Theme: Technology as a complementary aid

Explores the role of technology in maintaining connections between residents and ECS, while emphasising that it should complement rather than replace in-person contact.

The role and identity of the ECS

There was unanimous support for the role of the ECS. Residents and families consistently described the ECS as someone with whom they had a pre-existing, trusted relationship, typically a close family member or friend. They stressed that their involvement should be supported and sustained following admission to a care home.

“I would feel lost and alone without my friends and family, they are everything to me” - Resident

Participants also reflected on the role of the ECS. Many saw the ECS as already fulfilling a supportive role and as known to the care home, often as a named visitor. Their contact details and relationship to the resident should already be recorded in the care plan, suggesting that the ECS role builds upon established, practices.

“Families are integral to the identity of the individual. When communication is a challenge then regular contact with the family is essential, they know the resident best, they can tell me if there are subtle changes.” - Staff

Additionally, participants frequently noted that the ECS provides vital emotional and wellbeing support and companionship and should be able to provide direct care for the resident, if that is their wish.

“I can’t imagine not being told I’m not able to see my wife. We have lived our lives together and I have to see her every day, it means so much to us both” - Family

Flexibility and accessibility

Participants highlighted the need for care homes to adopt a flexible and inclusive approach to the number of named ECSs. While some families may have more than one ECS, others may need to identify an ECS quickly, particularly in response to changing circumstances or emerging needs. It was noted that the ECS role should be adaptable to reflect the diverse situations of residents and their families.

“It is essential I spend time with my father in and out of the home. It really perks him up. The rest of my family live far away and would feel anxious if I couldn’t get in and update them and when they visit, they should be an ECS too” - Family

Additionally, participants also highlighted that some ECSs may be elderly or have their own support needs, and they may require support themselves to facilitate a visit.

In addition, some residents suggested that ECSs could benefit from training or be present at staff training sessions. This would help them support the resident to enter the care home safely and feel part of the wider care team. Some participants noted that the ECS often knows the resident best. A team-based approach where information, such as changes in mood or nutritional intake, is shared can help build trust and strengthen relationships between families and care home staff.

“If they want to then friends and families can be trained in ‘moving and handling’, it makes them feel part of the team, which they are, after the training, they tell us they feel more reassured that their loved ones are being well looked after when they leave and their training kicks in when they take the residents out of the home” - Staff

Impacts of connection and separation

Many residents, families and staff described the negative impacts of separation from their ECS, particularly during periods of restricted visiting. These impacts included declining mood, increased stress and distress, reduced mobility, and worsening mental health. The loss of connection with close family and friends was seen as a key factor contributing to these outcomes.

“The physical needs of the residents were being met but without the ability to take the residents out and have families come in, I noticed withdrawal in the residents and a decline in the overall mood and wellbeing, this then led to an increase in physical needs like falls, sores, anxiety and confusion” - Staff

Even those who had not directly experienced visiting restrictions spoke about the potential harm such separation could cause, highlighting the importance of maintaining consistent and meaningful contact with ECSs. Families and friends also shared their own experiences of emotional strain, including feelings of anxiety when leaving the care home after visits. This was especially pronounced during the pandemic, but some noted that the feeling persists. People reported feeling less anxious when visits went well, suggesting that the quality of interaction plays a role in emotional wellbeing.

“I remember being sat in the car park and crying when I couldn’t get to see my dad, or when I did see him but through a window. I know the staff were doing their best but I knew he was confused and upset and I couldn’t explain it to him… I still think about it” - Family

Communication and collaboration

The importance of good communication between care homes, residents, and their families was frequently mentioned. Some said they were comfortable with temporary visiting restrictions, if they understood the reasons and felt reassured by the information provided. Others described how trust and transparency in decision-making helped them feel supported in their role as ECS, especially when they were not physically present.

“We have a really good relationship with the care home, they keep us up-to-date with everything and I’m sure it must be for a really good reason if we’re not able to visit for a short time” - Family

Positive relationships between families and care home staff were seen as central to building trust. Effective and honest communication was described as a key factor in strengthening these relationships, while poor communication had the opposite effect.

“I didn’t know I wasn’t able to visit my mum until I arrived. Wish I had been told what was going on as I made a long trip and remember feeling anxious for some time after” - Family

Technology as a complementary aid

The positive role of technology and adaptations in helping residents stay connected with friends, family, and future ECSs was frequently mentioned. Many care homes had to embed technology during the pandemic to maintain these connections, and in many cases, it has remained in place. Examples included Facebook groups, personal devices with FaceTime, and specialised accessible software.

However, it was consistently noted that technology should not be seen as a replacement for meaningful in-person time with loved ones. While digital tools can support connection, they were viewed as supplementary to physical presence, not a substitute.

“I have found the use of technology in the home as really helpful for me stay in touch with my family, however this is a nice to have and not a substitute for spending time with my family in person” - Resident

Summary

The above themes highlight strong support for the ECS role as a trusted individual who provides emotional and practical support to care home residents. Participants emphasised the need for flexibility in identifying the ECS, recognising that circumstances and needs may change over time, and that ECSs themselves may require support or training. The emotional impact of separation from ECSs was described as significant, with many reporting distress and declining wellbeing during times of restricted access. Clear communication, collaboration, and the use of technology were seen as important tools to maintain connection, though digital contact should complement rather than replace in-person contact.

Regulation 5 - Essential Visits

This section of the report outlines insights from interviews with care home residents, their family and friends, and care home staff in relation to regulation 5: Essential Visits. These insights are organised by theme.

Themes

Several key themes emerged from discussions about essential visits in care home settings. These themes reflect the perspectives of residents, families, and care home staff, and highlight the emotional, relational, and practical importance of maintaining meaningful contact. The findings have been grouped into the following themes:

Theme: All Visits Viewed as Essential

Highlights the view that all visits, regardless of who is visiting, or why, are essential to resident wellbeing.

Theme: Support for the Presumption of Harm

Reflects strong support for recognising the emotional harm caused when loved ones are unable to visit.

Theme: Timely access to loved ones during health crises and deterioration

Emphasises the importance of timely communication about resident decline and the need to allow loved ones to visit in times of health crises and at end-of-life.

Theme: Friends as Essential

Recognises the vital role of close friends in supporting residents, not just family members

Theme: Use of Personal Protective Equipment

Supports safe visiting through PPE and training, while noting the potential distress caused by PPE use for some residents.

All visits viewed as essential

The importance of visiting was mentioned frequently by participants. Many expressed the view that all visits, regardless of who is visiting or the reasons for their visit, should be deemed essential. This perspective indicates a strong belief that connection is fundamental to care and that visiting should not be restricted in ways that limit access to loved ones.

“I just want to spend time with my sister, I visit most weeks and I don’t want to have a reason why. It’s important. It should happen. It’s all essential at the end of the day” - Family

“I would be the essential care supporter for my mum and it’s vital we spend time together. I also value spending time with a close family friend. His family doesn’t visit too often and he seems to positively respond to me when I do see him. It means a lot to me too to stay in touch” – Family/ Friend

Support for the presumption of harm

There was strong support for the view that it is right to presume that the absence of loved ones will lead to harm. Many noted the emotional distress caused when family and friends were unable to visit, particularly during periods of restriction. The impact of separation was described as significant, and participants emphasised that maintaining contact is essential to the wellbeing of residents.

“I think the presumption of harm makes absolute sense. I know that my mum would be upset if I didn’t get to see her and I’m sure that’s true of lots of other people” - Family

Timely access to loved ones during health crises and deterioration

Participants emphasised the importance of timely access to loved ones during periods of deterioration and end-of-life. It was recognised that care home residents can decline rapidly, and that families and friends must be notified immediately so they can make arrangements to visit. In some cases, delays in communication meant that loved ones were unable to say goodbye, which was described as deeply distressing.

There was universal recognition that there cannot be a reason for loved ones to be prevented from saying goodbye at the end-of-life. Where this did happen, families and staff spoke of lasting trauma. There was a strong sense that any legislation or guidance must make it explicit that such situations cannot be allowed to happen again. The right to be present at the end of life was seen as fundamental, and its denial as deeply harmful.

“It can never happen again that anyone is alone at the end of their life. I tried to get families in but it didn’t always happen. I know that some families are carrying that pain and I am too” - Staff

Friends as Essential

While the Essential Care Supporter (ECS) is often a close family member, participants told of the positive impact of close friends visiting. Friends often play a vital role in residents’ emotional wellbeing, and their visits should be recognised as essential. In one instance, the interviewers observed a noticeable positive shift in one resident’s mood and cognitive abilities during a visit from a close friend. This highlights the importance of broadening the definition of essential visitors to include those with meaningful, non-familial relationships.

Use of Personal Protective Equipment

There was broad support for care homes helping the ECS to meet any training and infection prevention and control requirements, so that essential visits can go ahead safely. Participants recognised the importance of measures such as PPE in reducing the risk of transmission.

However, concerns were raised about the impact of increased PPE use, including face masks and gowns, on residents. It was noted that these measures, while protective, may lead to confusion and anxiety, especially for residents who are non-verbal or cognitively impaired. The balance between safety and emotional comfort was seen as an important consideration in planning and supporting essential visits.

“I don’t mind wearing a face mask if it means I can get to see my mum but it’s not the same if she can’t see my face and I can see it’s confusing to her. I would like to see any recommendations to wear certain equipment to be more tailored to the needs of the person” - Family

Summary

The themes explored above highlight a shared belief among residents, families, and care home staff that all visits, regardless of relationship or purpose, are essential to resident wellbeing. There was strong support for recognising the emotional harm caused by restricted contact, particularly during health crises and end-of-life situations, where timely access was seen as vitally important. Participants also suggested including close friends as essential visitors, acknowledging their significant emotional support. While PPE was broadly accepted as necessary for safe visits, concerns were raised about its impact on residents’ comfort and communication, especially for those with cognitive impairments.

Regulation 6 - Review of Decision to Suspend Visiting

This section of the report outlines insights from interviews with care home residents, their family and friends, and care home staff in relation to regulation 6: Review of Decision to Suspend Visiting. These insights are organised by theme.

Themes

Several key themes emerged from interviews with care home residents, their families, and staff regarding Regulation 6: Review of Decision to Suspend Visiting. These themes reflect the importance of maintaining meaningful contact, even during times of restriction, and highlight the need for transparent and responsive processes. The findings illustrate the emotional and operational considerations involved in reviewing decisions to suspend visits, and have been grouped into the following themes:

Theme: Shared Responsibility in Reviewing Visiting Decisions

Highlights the need for more than one decision maker in reviewing visiting decisions.

Theme: Need for a Simple and Timely Review Process

Emphasises the need for a simple process for reviews that avoids long delays.

Theme: Framing the Review as Constructive Rather than a Complaint

Highlights the need for reviews to be seen as constructive conversations.

Theme: Transparency and Shared Decision Making

Highlights the benefits of transparency and collaboration in making difficult decisions around visiting.

Shared Responsibility in Reviewing Visiting Decisions

There was universal support for the ability to review a decision to suspend visiting. While participants generally expressed trust in the decisions made by care homes, they emphasised that visiting is too important to be left to one person alone. Circumstances can change quickly, and people felt that decisions about visiting should involve more than one perspective to ensure fairness and responsiveness.

“We would welcome the option to review a decision to suspend visiting. Although we trust the care home to make the right decision, we welcome it being explained to us and so being part of the process. It must help the care home having another pair of eyes to help them make their decisions” – Resident & Friend

Need for a Simple and Timely Review Process

There was agreement that any system developed to review decisions to suspend visiting should be straightforward and provide a quick resolution. Participants noted that the standard complaints process, with timelines such as 20 working days, would not be appropriate in these circumstances, as visiting decisions often require urgent reconsideration.

“I would trust the care home to make the right decisions to keep me safe and my family safe, if they are visiting, however I welcome a straightforward way to review a decision. I won’t challenge a decision all of the time, but sometimes the home doesn’t know how important it is and that circumstances can change” - Resident

Framing the Review as Constructive Rather than a Complaint

Participants felt that a review of visiting decisions should not be seen as a complaint or as suggesting the care home has done something wrong. Instead, it should be viewed as a way to express the importance of visiting and to explain why a visit should go ahead in a particular instance. Some residents shared concerns about being seen as a nuisance or troubling the home, highlighting the need for a supportive, non-judgemental process.

Transparency and Shared Decision Making

Staff welcomed the transparency that a review system could bring, noting that it would help residents and families better understand why visiting decisions are made. Many said they would value the opportunity to be part of a review process, especially if it meant others could contribute to the decision. Several staff and managers also reflected on feeling isolated during the pandemic and felt that a more collaborative approach with other professionals would offer support.

“I welcome the transparency of reviewing decisions. It should be a team effort to come to a big decision like stopping visiting and wider views advocating for the resident to see their families are welcome” - Staff

Summary

The themes presented reflect strong support for a fair and responsive process to review decisions to suspend visiting in care homes. Participants emphasised that such decisions should not rest with one individual and that any review system must be simple, timely, and accessible. There was a clear desire for the review to be framed as a constructive dialogue rather than a complaint, helping residents and families advocate for meaningful contact. Staff also welcomed the transparency and collaboration such a process could bring, especially considering the isolation experienced during the pandemic.

Additional themes

This section of the report considers additional insights that do not fit into the regulation headings themselves. These are organised into the following themes:

Theme: Community Involvement

Highlights the benefits of intergenerational contact, community engagement, and efforts to rebuild links with external organisations following the pandemic.

Theme: Visiting in Hospitals

Reflects support for extending the principles of essential visiting, such as those in Anne’s Law, to hospital and clinical settings.

Theme: Individual circumstances

Emphasises the need to consider the unique situations of residents and their families, including the potential for carers and trained family members to support visits and care.

Community Involvement

Several homes noted the benefits of intergenerational contact, via through familial visits or partnerships with, for instance, schools, nurseries, guide or scout groups. Some staff noted that involving residents in activities such as, reading to children or hearing them read, can promote a sense of reciprocity. In one home, one of the residents highlighted the positive impact on her having spent time with a child from a local primary school. She noted the boost it would give her in looking forward to visits from the local primary school children and the visit itself.

“Intergenerational contact is so important, the residents spend time with the children and the children learn about the residents and old age. Some children seem more able to understand and cope with passing in their own family” - Staff

Additionally, many residents and staff raised the benefits of community engagement to health and wellbeing. It was stressed that the importance of going out of the home can be as important as having visitors in the home. This was particularly important for younger people with learning disabilities, but important for many older people too. Many people noted the positive impacts on wellbeing and engagement, particularly when it is regular and sustained, enabling people to develop relationships and experience interactions which enrich everyday life. Many mentioned that is fosters inclusion and understanding between generations, benefiting the whole community.

“My father has lived in this town his whole life, he would not be himself if he couldn’t go to the shops and the community hall, just like he did before” - Family

Furthermore, some home managers and staff described striving to rebuild community links which had often fallen away during the pandemic. Some recounted difficulties in re-establishing links with external organisations. One manager noted that the loss of work placements for people with learning disabilities, due to the pandemic, was something which had had significant effects on people’s quality of life and ability to be active citizens.

Visiting in Hospitals

Participants noted that the emotional impact of visiting restrictions extended beyond care homes and was also felt in hospital settings. There was strong support for applying the principles of Anne’s Law, particularly the recognition of essential visits, to clinical environments. People felt that the importance of maintaining contact with loved ones during hospital stays should be acknowledged and protected, especially during times of illness or vulnerability.

Individual Circumstances

Some staff noted that they were also family carers, and some families shared that they worked as carers in other care homes. It was suggested that if visiting restrictions were being considered due to staffing pressures, there is a cohort of well-trained members of the public, often family or friends, who could help alleviate these pressures by facilitating visits or even providing direct care to their loved ones. While this may not be appropriate in every case, many participants felt that individual circumstances should be considered not only from the resident’s perspective, but also in terms of the willingness and skills that exist within their support networks to assist and maintain connection.

Summary

The additional themes emphasise the value of community involvement in care settings, highlighting how intergenerational contact—such as partnerships with schools and activities like reading with children—can boost residents’ emotional well-being and foster inclusion. Regular engagement, both inside and outside the home, is seen as essential for maintaining health and social connections, particularly for older adults and younger people with learning disabilities. Many homes commented that they are working to rebuild community links lost during the pandemic, which had disrupted work placements and social opportunities.

Several participants also mentioned the emotional impact of visiting restrictions in hospitals, advocating for the principles of Anne’s Law to translate in a hospital setting and that essential visits are supported. The final additional theme notes that individual circumstances should be considered when managing visiting policies. Some families and friends informed us they have caregiving skills that could help alleviate staffing pressures with the view of maintaining vital connections, though it was acknowledged that this approach may not suit every person and situation.

Conclusion

The in-person care home focus groups offered the opportunity to hear directly from those who will be most affected by the Anne’s Law regulations: care home residents, their families and friends, and care home managers and other staff.

There was strong support for the concept of Anne’s Law and for the draft regulations. Every interviewee recounted powerful descriptions of the emotional impact of separation from loved ones, with reports of distress and declining wellbeing during the COVID-19 pandemic when there were restrictions on visiting. Interviewees saw the regulations as the mechanism that would prevent them and others from experiencing these extremely difficult circumstances again.

There were clear messages of the importance of visiting and of being able to maintain contact, especially with a trusted individual such as an Essential Care Supporter. There was also strong support for a fair and responsive review process, and for this to be part of constructive communication between care home providers and residents and their families and friends.

The feedback which focused on how the regulations would work day-to-day has been considered in the main body of the report and will be used along with survey data to inform the Code of Practice.