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

Part 2: Delivering Anne's Law: supporting people who live in Adult Care Homes to maintain family and friendship connections

Overall, there were 283 respondents to Part 2 of the Anne's Law consultation, one non-standard response and five workshop events.

Q1 The overall aim of Anne's Law

Nearly all participants agreed with the overall aim that people living in adult care homes should have the right to see those important to them to support their health and wellbeing. A total of 280 participants responded with 99% of individuals and 97% of organisations agreeing.

Q1 Do you agree with the overall aim that people living in adult care homes have the right to see and spend time with those who are important to them in order to support their health and wellbeing?

	Individuals	Organisations	Total
Yes	243 (99%)	33 (97%)	276 (99%)
No	1 (0%)	1 (3%)	2 (1%)
I don't know	2 (0.8%)	0 (0.0%)	2 (1%)
Total	246	34	280

Of the 280 respondents to this question, 260 provided a reason for their response. The main reasons given were:

• The mental and physical wellbeing of residents and their loved ones
• Quality of life is paramount
• The importance of family connections
• The need for residents in care homes to have the same human rights as other members of society
• The specific negative impact of the restrictions on care home residents with dementia

Care Home Relatives Scotland presented a number of scenarios experienced by residents and relatives in the pandemic:

"Our group (current membership 2012) was established In August 2020 to support the growing number of friends and relatives, who for the previous 6 months had been totally denied any opportunity for meaningful contact with their loved one in residential care. The outpouring of anxiety, guilt, grief, sadness, anger, despair and heartbreak has been immense. The voices of the residents in care sadly remained silent and unheard.

• Daughters were forced to watch from a distance as carers held a dying mother's hand
• Elderly husbands peered through windows to see their distressed wife reaching out for a familiar touch
• Children and young adults were left distraught and with no comprehension as to why they were "abandoned" by their family
• The use of prison style screens and intercom communication were cold, unfeeling and gave no comfort
• I-pads and online communication was impossible for the many residents with no understanding of zoom calls or facetime."

There were many comments on the impact of this isolation on the mental health of residents and their relatives.

"Emotional support from a loved one, family member, friend can be invaluable to residents. To completely restrict a resident from their family is detrimental to their health and as has been evidenced over the last 18 months, may contribute to overall decline in health. Safe and supported visiting should be encouraged at all times." (Organisation respondent)

"My own mother's mental health has suffered. Her communication levels have deteriorated to the extent she now basically says yes or no. Prior to the long periods of lockdown mainly due to staff testing positive, she was great at holding a conversation." (Individual respondent)

"Because it's a basic human right and one which is essential. This right is allowed and expected in every other part of our community so must be extended to care homes too. I note the words "living" and "homes" in this question - these are crucial to the implementation of Anne's Law - care home residents are 'living in their homes' therefore must have the same rights as any other member of the public who are 'living in their homes' too". (Individual respondent)

"I have personal experience of being barred from visiting my husband for two lockdowns - one of four months and one of six months. We had previously had daily outings together. Despite daily video calls, during each lockdown I had to watch my husband become more withdrawn and despondent. At the start of each lockdown, he could communicate on these video calls but a couple of months in he would no longer look at the camera and his conversation became monosyllabic and then non-existent. He also stopped eating and lost considerable amounts of weight each time". (Individual respondent)

Some responses from organisations referenced the benefits of family and friend contact for residents with dementia:

"Next of kin, family and friends can offer the unique support and reassurance to relatives in care that carers cannot. Their knowledge of past life experience is essential and has a positive response especially with those suffering from dementia." (Individual respondent)

"There is extensive evidence to support the theory that contact with loved ones is a fundamental human need which can significantly impact on wellbeing. This is very important particularly for people with dementia which we know are a significant part of the care home population." (Organisation respondent)

Q2 Opinions on the main aims of Anne's Law

Nearly all (278) of the respondents to Part 2 of the consultation provided a response to the question on the main aims of Anne's Law. The main issues raised included:

• The need to protect human rights and ensure that meaningful contact is enshrined in law
• The need to maintain the right to family life
• The need to prevent restrictions recurring
• The need to provide clarity and guidance for residents, families, care home managers and staff
• The need to make sure that the response to infection prevention is proportionate and personalised

"People in care homes are living in their homes. Therefore, they should be entitled to have the freedoms we enjoy in our homes. My uncle went through weeks of solitary confinement in his room. We wouldn't accept this in prisons where there is a minimum amount of activity and outside exercise. Our care homes and nursing homes should never have their doors closed to those who have loved ones living there. It is immoral and dangerous. I fear what is going to come out over the coming years of what has gone on in some establishments." (Individual respondent)

"To ensure residents/families are never again denied meaningful contact. By this I mean physical contact. There is no reason why families should be denied access to relatives in care homes, using the correct infection control procedures." (Individual respondent)

"To ensure that homes have a safe code of practice to follow, with clear guidelines and support to facilitate safe visiting during any outbreak, infectious period and know that they will be supported by Local Authority, government, HSCP and Public Health to do so". (Organisation respondent)

"My opinion [is that] all families should be allowed in no matter what the lockdown level is as our families need all of us not just one. If it had to be at different times I can understand to an extent but we can not let our families finish their life this way restricting who they can and cannot see! No appointment system just needs a law to ensure our families can be with us when they need to be especially in a time of need! We can't predict when that is so we need law to ensure we can be with them at any time!" (Organisation respondent)

"The main aims for Anne's Law should be to ensure a consistent, fair approach is taken in relation to visiting across the sector in the whole of Scotland. This will ensure continuity of care and reduce variation between providers, areas etc. Achieving this minimum standard will support resident health and wellbeing." (Stirling Council)

The Law Society of Scotland highlighted that the rights of residents and others should be protected by existing legislation:

"Adults living in care homes already enjoy rights to family and private life under Article 8 ECHR. We do not believe that it is necessary to create a new right in legislation. What is required is effective protection for existing human rights in adult care home settings, to meet the aim of ensuring residents in care homes can spend time with those who are important to them in order to support their health and wellbeing… We recognise that the rights impacted are likely to be qualified, not absolute and their exercise needs to be balanced with the wider interests of public safety and the protection of individual and community health… We would suggest that the aim of Anne's Law should be to allow adults living in care homes to effectively claim their existing rights, and to ensure that those rights are restricted only in exceptional circumstances and in a way that is proportionate and non-discriminatory in according with national and international human rights law. Consideration should also be given to mechanisms to ensure effective protection of the human rights of adults living in care homes in all situations." (Law Society of Scotland)

Q3 Visiting rights

The majority of individuals (83%) agreed that both residents and visitors should have the right to see those important to them in care (Q3). Combined with the residents percentage, practically all individual responses (99%) thought this should be a right. For organisations this was split between both residents and visitors (50%) and residents only (47%).

Q3 Do you think this should be a right for residents or for the visitor(s)?

	Individuals	Organisations	Total
For both	204 (83%)	17 (50%)	221 (79%)
For resident	39 (16%)	16 (47%)	55 (20%)
I do not think there should be rights for either resident or visitor	2 (1%)	1(3%)	3 (1%)
Total	245	34	279

Reasons given included:

• The fact that access should already be covered in human rights legislation
• The impact on the mental and physical health of friends and family as well as residents
• The need for family members and care home staff to work together as partners in care
• The need to consider family sensitivities and circumstances in terms of named visitors, including some cases where respondents thought that residents should have the main say
• There was some disagreement with the concept of a single nominated visitor with some suggesting this may place undue pressure on families
• The importance of not relying on technology as many residents struggle to cope with it

Selected verbatims included:

"Care homes are only the place in which residents live, their family and friends should have the same rights as care staff to enter the buildings and spend quality time with them." (Individual respondent)

"The care, comfort and contact of a visit is experienced by both the resident and the visitor and this right to human contact extends to both and will benefit both. Primarily the right may be viewed as being for the resident, but we must also consider the short- and long-term impact of children, partners, family members and friends being restricted or banned from visiting care home residents. Care Home residents are understandably on a restricted life time-line and without Anne's Law many will die without access to a family member/friend." (Individual respondent)

"This should be a right for both residents and visitors. We are all entitled to hold and enjoy rights on an equal basis…In particular, the Article 8 right to family life is held by both a care home resident and a family member of that resident. Note also that we consider that this includes all persons living in all residential health and social care settings whether voluntarily or involuntarily." (Organisation respondent)

Q4 Balancing the rights of residents and others

Respondents were asked about how the rights of residents can be balanced against the rights of other people in the setting for example other residents, staff, visiting professionals (Q4). There were 265 responses to this question. Recurring themes included:

• Residents' human rights should be paramount
• Visitors are tested more regularly than staff so should, according to the respondents, be less of a risk to residents
• Visiting rights to be included in individual care plans
• There should be appropriate IPC measures in place (including PPE) and proper risk assessment tools made available
• A partnership approach is required with good communication between the home, residents, and their families
• Consideration should be given to suitable separate areas for meeting within the home
• Mixed views on whether children should be allowed to visit and whether vaccination should be a requirement

Selected comments on this question about balancing the rights of residents, staff, visitors and others included:

"A person requiring support within residential accommodation must always have the right to spend time with those important to them and who in turn will be providing an essential part of their care. The importance of face to face contact cannot be underestimated. Many care home residents are unable to make their wishes known so rely on their Power of Attorney or close family to provide advocacy and ensure they receive the correct care from within the care home and wider services." (Care Home Relatives Scotland)

"If you look closely you will see there is a perfect balance around the world between risk and rights for everyone. Anne's Law is not about favouring one resident over another, it is about equality for all citizens regardless of their place in society. Don't forget, relatives of residents in care homes can also be staff in other care homes and professionals who visit other care homes. it makes no logical sense that they can pull on a uniform or flash a badge and be any less of a risk than if they were visiting their mum." (Individual respondent)

"This is very difficult as everyone has rights and when we supported essential visitors for our residents, we encountered real anger and distress from relatives of other residents who strongly felt no one should be allowed in the home". (Organisation respondent)

"Trust, communication and effective infection prevention and control (which CI inspection reports show is sadly lacking in too many care homes)." (Individual respondent)

"Everyone's rights and needs should be considered. Proper risk assessments which consider not just physical harms. A risk enablement approach - what is important to everyone, how can we do this rather than automatic no. Active engagement with all parties working together." (Individual respondent)

"The rights of individual patients should be the priority always and not seen as an inconvenience to work schedules of staff, perhaps more staff would be an idea. Designated visiting areas for residents and family." (Individual respondent)

"The decision to restrict or limit visiting should always be done within a rights-based approach and under a risk assessment of the environment etc. This should be led by the public health message and in full consultation with public health professionals. Any limits to this should be for the minimum time, and always support essential compassionate visiting." (Organisation respondent)

"This should be a right for the residents to decide who they see and when. The principles of the Adults with Incapacity Act should be followed for those who lack capacity to make these decisions. This should include what is in the best interests for the resident and takes into account previous wishes i.e. considering what their previous relationship dynamics were and whether contact was supportive or detrimental to wellbeing." (Stirling Council)

Q5 Benefits, challenges and risks

Question 5 addressed the main benefits, challenges, and risks of the proposal to develop legislation to support people living in adult care homes to have the right to see and spend time with those who are important to them.

Benefits

The benefits identified by respondents to this question are similar to those identified in Part 1 of the consultation. Of the 283 respondents who took part in the Part 2, 271 provided benefits or other comments. These included:

• Quality of life
• Improved mental, emotional and physical health for both residents and their loved ones
• Supporting human rights
• Support for care home staff
• Maintaining family and other relationships
• Consistent visiting guidelines for care homes
• Legal protections and safeguards in event of disputes

The needs of residents with dementia were highlighted by many respondents as has been noted separately above.

"The greatest benefit will be that residents of care homes will no longer fear that they will be denied the right to see and spend time with those who are important to them in the closing months of their lives." (Individual respondent)

"Main benefits are the continued family support for the resident through a difficult time in their life. Emotional contact with those they love would have a beneficial effect. Knowing that they are not abandoned, that reassurance is at hand whenever it is needed would make all the difference to those in care. Contact should not be restricted as at present." (Organisation respondent)

"The presence of the designated caregiver is vital to the well-being of the person receiving care and support. The presence of the designated caregiver will result in a decreased risk of unintentional harms, including decreased risk of emotional, mental and physical harms." (Individual respondent)

"There is a wide range of evidence internationally that social connectedness is required for good health. Anne's Law would reduce social isolation, poor mental health and associated effects on physical health. This creates a more efficient and effective service as there are less care needs for staff to manage and residents, carers and staff are happier" (NHS Greater Glasgow and Clyde).

A number of respondents did state that the legislation should not be needed as the right to spend time with their loved ones should already be covered under the Human Rights Act 1998.

Challenges

There were 255 responses to the question on the challenges posed by the proposed legislation. Again, these were similar to the challenges identified in Part 1 of the Consultation. These included:

• All homes complying with the legislation
• Family members complying with legislation or guidelines i.e., on the use of PPE or social distancing and getting all parties to agree safe visiting protocols
• The potential for family disagreements if there is only one designated visitor
• Staff shortages and the additional administrative time that logging visitors might take
• Spread of infection
• A fear of blame and making a mistake
• Sheltering other residents when visits take place
• The additional costs associated with the measures.

A substantial proportion of respondents said there were no challenges in their view, relative to the impact of no visitation on their families. Those that did cite challenges provided comments around the safety of other residents, staff and other visitors.

"Keeping people safe from infection. Staff trying to police this when people don't always follow guidelines. The time/resources, including providing for this. Adapting existing environments and procedures to make this possible. Anxiety about blame and guilt if people do get infection. Helping staff to feel safe and supported in new ways of working. Difficulties in managing e.g., who is going to be the designated visitor if only one is allowed." (Individual respondent)

"In the case of Covid, the challenge is to allow this to happen safely whilst keeping other residents, staff and visitors safe and keeping the virus out. Also, without adding more work to stressed staff." (Individual respondent)

"[Challenges include] the provision of education and relevant information to ensure that individuals rights are upheld; potential restrictions to funding may lead to lack of equity in access to resources required to facilitate safe visits; and application across all health and social care settings" (Erskine)

Risks

There were 248 responses to the section on risks.

• Introduction of infection into home (although many thought this risk was minimal given testing and vaccination)
• Potential adult protection issues with the risk of "coercive" visitors
• Visitors may have an impact on other residents and may "bend the rules" i.e., in relation to nominated visitors
• Some thought risks outweighed by benefits and that visitors brought no more risks than staff
• Level of resources (i.e., staffing, PPE etc)
• Ambiguity in the language employed in the legislation which may therefore be open to interpretation
• Risk that there will be entitlement for access at all hours and the associated impact on operations and staff
• Insurance for care home providers

"More risk of infection from Covid as well as other infections, colds etc. But I think the benefits far out-weigh the risks." (Individual stakeholder)

"We have some relatives who are actively anti vaxxers and will not wear a mask or test, the law needs to ensure we have the support to challenge these behaviours which are out of line with the expectations within the homes."
(Organisation respondent)

"Life is full of risks. Adult humans and their caregivers should have the right to determine their own risk." (Individual respondent)

"The risk of not allowing visits is far greater than the risk of allowing visitors! Residents in care homes are at the end of their life - their death is not the great tragedy of this situation- their loneliness and despair is." (Individual respondent)

""During normal times, we have an open visiting policy and we are currently open to visiting. However, this legislation appears to enforce full access to our home for designated visitors at particularly challenging times such as during the height of a Global Pandemic on the same basis as staff and with no right to cancel the visits for any reason or to restrict visiting times?" (Akam Care Ltd)

"The management of risk is at the heart of any potential change in the law. We believe that the right of access should be reasonable and proportionate at all times, reflective of the risks to the individual resident, to other residents and staff." (Scottish Care)

Q6 Settings

Over two thirds of respondents disagreed that proposals should apply to only those living in adult care registered with the Care Inspectorate, 73% of Individuals and 75% or organisations selected "No".

Q6 Should the proposals apply only to people who live in an adult care home (residential and nursing) registered with the Care Inspectorate?

	Individuals	Organisations	Total
Yes	26 (11%)	2 (6%)	28 (10%)
No	179 (73%)	24 (75%)	203 (73%)
I don't know	41 (17%)	6 (19%)	47 (17%)
Total	246	32	278

There were 230 respondents who gave a reason at Q6. There was a very strong majority of respondents who thought that these rights should apply across all residential settings, including children's homes, supported housing, retirement complexes and hospitals.

"It may be difficult to monitor those settings not registered although ideally the law should cover all" (Individual respondent)

"The rights of residents living in a care home should be those of the rest of society wherever this is possible. As this is a group living environment, there will be times when, following risk assessment and upon advice of public health, some freedoms may require to be limited to support the well-being of the collective resident group." (194)

Q7 Other comments

Question 7 sought 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.

"The current guidance allowing a "named visitor" to have contact with their loved one during a "controlled outbreak" is a step in the right direction, but we know that care home companies can make their own final decision as to whether they will facilitate this. We are very aware that the pandemic still presents a risk to all, but our greatest fear is that we will once again be "locked out" and have to endure a repeat period of torture." (Care Home Relatives Scotland)