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

Part 1: Strengthening the Health and Social Care Standards

Introduction

The consultation document asked respondents if they agreed with the overall aim that those in adult care homes should have the right to see those important to them to support their health and wellbeing. It then sought views on whether existing Health and Social Care Standards should be strengthened or new Standards developed. It asked respondents to indicate their preferences on a list of suggested new standards. Finally, respondents were asked whether the proposals should only apply to those living in an adult care home and to consider the main benefits, challenges and risks involved with an update to Health and Social Care standards for those in care.

Q1 Views on the overall aim of the consultation

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 155 participants responded with 98% of individuals and 100% 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	124 (98%)	29 (100%)	153 (99%)
No	1 (1%)	0 (00%)	1 (1%)
I don't know	1 (1%)	0 (0%)	1 (1%)
Total	126	29	155 (100%)

The same number of respondents gave a reason for their response. These reasons tended to relate to:

• Basic human rights and dignity, including access to loved ones
• The extreme emotional and mental distress caused by enforced isolation, including those families who lost loved ones in care homes during the isolation period
• The close relationship between mental and physical health and the deterioration in physical health attributed to lack of visiting rights
• The impact of families not being able to contribute to care
• The difficulty of relying on technology

For some respondents, there was a sense that the question should not really have been needed to be asked and there was genuine and deep-seated anger on the part of many:

"I never again want to have to sit behind police tape and watch my mum - who has dementia - being restrained from coming near me. The way this country (and others) has treated residents and their families has been barbaric" (Individual respondent)

"It is not only their right, it is their voice and protection from neglect. Care homes can only do so much, and I have seen a totally unacceptable level of care provided to residents when they are isolated from those who speak for them." (Individual respondent)

"My mum (88) has vascular dementia and has been in a Care Home for eight years. I had to stand on bricks outside her window and watch while she lay there gravely ill with Covid. I had to stand and watch on another occasion when she was unresponsive. I had to stand there when she was saying 'C'mon in hen' to me on the outside. I had to stand and watch from outside as she struggled for 20 mins to try and get her food on her fork when there were no staff available to help her. The days she recognised me were the worst. Those were the days she pleaded with me to come in, those days broke both our hearts." (Individual respondent)

"Of course they have that right! Care home residents live in their OWN HOME and carers work in their home - residents do not live in their workplace!! No one has the right to deny contact with relatives and friends who play a major part in their health and wellbeing. Lives have not been protected during the pandemic - they have been destroyed. What is the point in extending residents' lives if their lives are not worth living? Residents should have the same rights as everyone else in the community to spend time with those dearest to them". (Individual respondent)

The difference in practice across the country in terms of the variations in interpretation of the guidelines was also noted.

A number of comments noted that this is not just about mental wellbeing but also physical wellbeing, with some suggesting that residents' physical health had deteriorated as a result of, for example, not being able to go out for a walk with friends and family. There were also a few comments that referenced that while normal activities have resumed for the general population (visiting or getting a visit from a hairdresser was one example), this is not always the case for people in care.

Eighteen organisations provided comments on this question, many highlighting the human rights aspects of the proposals.

"COSLA recognises that social care support is essential for many people to fulfil their human rights. COSLA promotes a human rights-based approach, drawing on the PANEL principles of Participation, Accountability, Non-discrimination and equality, Empowerment and Legality. Social care support protects people's human rights by ensuring they are connected with, and able to contribute to, society, and are supported to live as independently as they wish to. This includes the right to a family life and for carers to have a break and a life beyond caring." (COSLA)

COSLA also highlighted Article 19 of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) which indicates that "disabled people have a right to live in the community, with the support they need and can make choices like other people do". Social Work Scotland also highlighted Article 8 of the Human Rights Act.

Nearly all the organisations that responded to the consultation explicitly mentioned the importance of social interaction for mental wellbeing. Scottish Care also highlighted the need to provide support to those residents who do not have friends or family that are able to visit.

"For many people having contact with family and friends is a critical part of their health and wellbeing and this should be encouraged and enabled but at all times the individual choice and autonomy of the resident must be respected. Scottish Care agrees that families and friends play an essential role in the health and wellbeing of people whilst also recognising that there are many for whom there are no family and friends able to visit and therefore other activities and supports are fundamental to the wellbeing of those individuals." (Scottish Care)

The Coalition of Care and Support Providers in Scotland cited Alzheimer Scotland's report COVID-19: The Hidden Impact and the Scottish Human Rights Commission's COVID-19, Social Care and Human Rights which it says described the adverse consequences of this decision in terms of health, wellbeing and the limitation on human rights.

"The government's support of the right to meaningful contact is a welcome return to the Health and Care standards. CCPS supports changing the standards to give this right greater weight when balancing it against necessary public health considerations." (Coalition of Care and Support Providers in Scotland)

Q2 Health and Social Care Standards

There was a total of 151 responses to the question asking whether Health and Social Care Standards should be developed, or existing ones strengthened. Individuals (34%) and Organisations (38%) agreed that a new standard was required. Improving existing standards followed closely with 27% of individuals and 35% of organisations agreeing, individuals (29%) also agreed that both needed to be done in similar numbers. Only a very small number stated that nothing needed to be done.

Q2 Do you think that a new Health and Social Care Standard (or Standards) should be developed, or should the existing Standards be strengthened?

	Individuals	Organisations	Total
A new Standard is required	41 (34%)	11 (38%)	52 (34%)
The existing Standards could be strengthened	33 (27%)	10 (34%)	43 (28%)
We need to do both	35 (29%)	3 (10%)	38 (25%)
We don't need to do either	8 (7%)	4 (14%)	12 (8%)
I don't know	5 (4%)	1 (3%)	6 (4%)
Total	122	29	151

Reasons given included:

• Existing rights and guidelines should be respected and enshrined in law
• Current guidelines are insufficient and applied inconsistently
• Current guidelines should be strengthened and enforced - with more oversight from the Care Inspectorate in general
• There should be explicit mention of the right to see a "loved one"
• There was a view amongst some that the standards are fine - the problem is in the interpretation and implementation - others indicated that there should be a new standard which explicitly refers to contact in the context of a public health outbreak
• Residents and families do not have a strong enough voice: there is a need for input from them

Selected responses are provided below:

"Care homes are not prisons. They should not be paid to treat residents like prisoners. Care standards should be adjusted to accept the fact that everyone in a care home is at end of life - their death is not the tragedy - every effort should focus on quality of end of life NOT preventing end of life" (Individual respondent)

"When a person enters a care home, that becomes their home, therefore it should be treated as such. Loved ones should be able to, (by law) offer comfort to family/friends in care as and when needed. This should not be left to the discretion of anyone other than the loved one and those in care" (Individual respondent)

"I think these could be expanded with the help of residents in care, their family and staff. The standards should focus on things that will benefit the residents with a focus on their physical and mental wellbeing. Family and friends have played a huge part in the person's life and no one should have that taken away from them because of policies!!" (Individual respondent)

From an organisational perspective, there were mixed views as to whether a new standard should be created or existing standards should be strengthened, or both. Several highlighted the need for simplicity and also the need to address "extreme circumstances). There were 22 responses from organisations to this question.

"I think it'd be easier to add in a new standard, developed from what is intended and be clear and concise. People/staff understand the current standards; they are simple and clear without jargon, and so there would be no point changing them when they are already known. Adding in one new standard of the same simple context for all to understand is quicker given the 'forever changing' circumstances." (Care home respondent)

"The current standards are written for life out-with a pandemic and the associated restrictions. For absolute clarity there should be an additional section for "extreme circumstances." (Care Home Relatives Scotland)

"A new standard being developed would give greater importance to the need to ensure that even due to circumstances such as a pandemic, that risks to residents, visitors and staff are assessed and when safe to do so, residents should have access to see their families and friends. A blanket approach to prevent face to face physical access should be avoided and a measured multi-disciplinary approach should be taken to risk assess and ensure the residents wishes along with safety are at the heart of the decision making. The standard may also be able to address the use of technology/ social media platforms to maintain access to family and friends when it is deemed not to be safe to be in the home in person." (NHS Ayrshire and Arran).

"There appears to have been variation across the country around the interpretation of guidance and some areas have had 'blanket bans' around visiting which has been detrimental to residential clients and families/friends. A standard around visiting emphasises the residents right to autonomy and self-determination which should not be interfered with unless authorised by law, guidance and proportionate but will also require shared understanding of when these rights can be overridden." (Shetland Islands Council)

Qs3-5 Suggestions for strengthening the existing Standards

Unprompted responses to suggestions for strengthening the standards included (Q3):

• The need for enforcement of standards and particularly whether they are being consistently and meaningfully applied
• A focus on quality of life
• Specific references to rights of access and communication
• Specific references to the inclusion of those with Power of Attorney in decision-making
• Access to basic healthcare (e.g., GPs, dentists, chiropodists etc)

Please note that this list is not exhaustive. Many also expressed a preference for legislation rather than guidance. However one of the care homes that responded stated:

"The existing standards do actually cover this, I think the accompanying guidance could be more specific". (The Glade Care Home)

When asked to rank the four provided options of what a new standard could be (Q4), if living in a care home with restrictions to prevent infection, having a named visitor (and substitutes) being fully involved in supporting my health and wellbeing at any time was ranked as the top choice by a third (35%) of all respondents. For organisations, this figure was 29% which was second behind visitors being able to spend time with someone in care as long as it is safe (39%).

Q4 If you think a new Standard is required, what do you think of the following:

Respondent Type	Individual	Organisation	Total
	Rank 1	Rank 1	Rank 1
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	(42) 37%	(8) 29%	(50) 35%
If I am an adult living in a care home, I can nominate a named visitor (and substitutes) who I am able to see and spend time with at any time to support my health and wellbeing which meets my needs and preferences	(32) 28%	(3) 11%	(35) 25%
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	(15) 13%	(11) 39%	(26) 18%
If I am an adult living in a care home, I can nominate a named visitor (and substitutes) who I am able to see and spend time with to support my health and wellbeing which meets my needs and preferences	(11) 10%	(0) 0%	(11) 8%
I don't like any of them	(15) 13%	(2) 7%	(17) 12%
I don't know	(0) 0%	(4) 14%	(4) 3%

Comments on Question 4 tended to reference:

• The fact that well-being of residents should be the priority
• There was some debate over the concept of a named visitor: there was a view amongst many respondents that people should be able to see whoever they want as a basic human right^[1]
• A blanket ban should not happen again
• The need for unambiguous language i.e., "as long as it is safe". It was suggested that thresholds should be provided so that decision-making was not solely at the discretion of care home managers. One referenced "substitutes" (i.e., in the plural) as another area of potential ambiguity
• The sensitivity of language and the need for the terminology to reflect the fact that residents are in their home
• The need to provide family and friends with PPE.

When respondents were asked whether they have an alternative suggestion for a new standard (Q5), standards suggested included:

• I am supported by staff to maintain my physical, mental, and emotional health
• Wording in c) with this sentence at the end: as long as they know and understand the risks of spending time with me and are provided with the same protection and regular testing that staff are.
• If I am an adult living in a care home and general visiting restrictions are needed to prevent infection, my named Essential Care Giver (and substitute) is permitted open access into my personal residential setting, on the same grounds as care provider staff (following all the same PPE and safety protocols applicable to them), to support both my health and wellbeing and theirs, at any time and without limitation on length of visit.
• If I am an adult living in a care home, I am able to see anyone who is important to me and spend time with at any time to support my health and wellbeing which meets my needs and preference.
• If I am an adult living in a care home and visiting restrictions are needed to prevent infection, my named visitor and myself are fully supported to communicate and given timely information by the service
• I suggest a statement that gives a minimum contact requirement for essential visitors would make this workable for all concerned: for example: statement (a) with an additional phrase
• If I am an adult living in a care home, I can nominate a named visitor (and substitutes) who I am able to see and spend time with to support my health and wellbeing at times which meet my needs and preferences. In the case of a time of crisis or need for infection control, I would be entitled to see and spend time with my named visitor for a minimum of four hours a week and have a minimum of two contact periods a week. My named visitor (or substitute) would be required to follow the same health and safety standards required of care home staff at such a time in order to ensure the safety of all residents
• A care home will at all times be supported to ensure meaningful contact is maintained between a resident and family or friend. Adhering to the same IPC rules as staff members this contact must never be completely denied.
• If I am an adult living in a care home and visiting restrictions are needed to prevent infection; I will be asked what my preferences are, indoor visit, outdoor visits, home visits or videocall/telephone calls at any time. I can change my preferences at any time and as many times as I choose. I want my named visitor (and substitutes) to be supported by the service to uphold my choice and be able to remain fully involved in supporting my health and wellbeing

Please note that the list above is indicative and not exhaustive. There were 42 responses to this question. Selected verbatim responses are provided below.

"I feel having one nominated person could cause a lot of family tension and conflict trying to decide who the one nominated person is, family dynamics can be complex. I don't see the need to have a limit on it. If my Grandma was still alive in her care home and I was her nominated person (as her POA I have a duty of care and responsibilities that come with that) I would be visiting and then coming home to the same house as my mother and brother. (Individual respondent)

"It is an absolute standard to see who you want without interference. Work from that premise." (Individual respondent)

"We would do well to consider and include in any standard that these institutions are the residents' home and should be treated as such. They should always have access to family and to necessary services, they should be allowed outside and indeed this should be facilitated at every opportunity, we should remember they are people not just statistics or a way for the home to make money" (Individual respondent)

A small number of respondents did suggest that some restrictions might be appropriate in certain circumstances, but this was very much the minority view.

Q6 Application to settings

A total of 145 respondents answered the question on whether proposals should only apply to adults living in a care home registered with the Care Inspectorate. The majority of individuals (74%) and Organisations (89%) disagreed with this statement.

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	13 (11%)	2 (7%)	15 (10%)
No	87 (74%)	24 (89%)	111 (77%)
I don't know	18 (15%)	1 (4%)	19 (13%)
Total	118	27	145

There were 95 open-ended responses to this question. There was a general view that the eventual proposals should be applied to all residential settings including: children's homes; settings for adults with learning disabilities, sheltered housing; and care at home. Hospitals were mentioned several times. Specific comments included:

"I was at home and separated from my family during lockdown and there seemed to be no point in living anymore". (Individual respondent)

"Of course not!! ANYONE living in so called 'care' has the right to see and spend time with the most important people in their lives - otherwise what exactly is the point of their lives??" (Individual respondent)

"All adults should be supported to maintain contact with those who are important to them, not just those registered with CI". (Individual respondent)

"It should possibly be applied to all areas registered with the Care Inspectorate, the issue of access to loved ones and support are equally important to people living with a learning disability, with mental health issues and to children and young people in terms of their wellbeing and remaining connected." (Organisation respondent)

"This would only add to the disconnect that the H&SC is for limited settings so absolutely NO" (Aberdeenshire Health and Social Care Partnership)

"The standards apply across all Health and Social Care settings, therefore to ensure equity across the sector, consideration may be required for the application in other care and health settings." (Organisation respondent)

Q7 Benefits, challenges, and risks of the proposals

Respondents were asked what they saw as the main benefits, challenges, and risks of a proposal to update the Health and Social Care Standards to support people living in adult care homes to have the right to see and spend time with those who are important to them (Q7). This was an open-ended question and 111 responses were provided. These are summarised below under the headings of benefits, challenges, and risks.

Benefits of the proposals

The following benefits were cited:

• Quality of life for residents
• A focus on human rights
• Mental and physical health and wellbeing of residents
• Human contact and family connections
• Removes the discretionary decision-making of individual homes
• Greater clarity around the standards and more support for care home managers and staff

Challenges of the proposals

The following challenges were identified:

• All homes applying the same standards
• A fear of blame and making a mistake
• The individual care home culture
• Staff shortages
• The need for extra hygiene measures and controlling infection

Risks

The following risks were identified:

• Introduction of infection into home (although many thought this risk was minimal given testing and vaccination)
• Visitors should have an awareness of their potential 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

Selected quotes are provided below.

"[The] benefits are obvious - this will help with both residents and relatives/friends mental wellbeing… Challenge will be to ensure all care homes apply the same standards. Risks - I have never understood why I as a 'visitor' poses more risk to my relative than the several members of staff who may attend to my relative any one day. As long as all infection prevention protocols are adhered to, there is no more risk from a visitor than from a member of staff." (Individual respondent)

"The challenge is obviously to support these rights while still minimising the risk. However, I strongly believe the biggest risk of infection transmission is and always was staff. Staff live in the community, socialise, come into work and work with vulnerable people. Families have so much at stake and will moderate their behaviour accordingly in order to be able to see and support relatives. Obviously, you cannot exclude staff and it was all too easy to exclude families, who were never the problem in my view." (Individual response)

"The benefits: the individual receives the presence, touch and smell of their loved one. They get to hear their voice, share memories, laugh, cry, and just sit and be with each other. Their fundamental need to be with their 'family' is fulfilled. Staff are supported to carry out their roles by sharing the caring role with those who have family to help. Risks: the family member may catch the infection if it's in the home. They may introduce it unwittingly, both minimised by treating staff and family the same way in terms of regular testing and education on hygiene control measures." (Individual respondent)

"There are no risks. The risk is lives ruined by failing to act. I've had to accept the loss of my father, knowing he spent months at a time isolated from family. This cannot be allowed to happen again in what we consider to be a modern society." (Individual respondent)

"It is a fundamental human right to spend time with loved ones, those who care about you and want to see you... for all those who do have people wanting to spend time with them it is often the main thing that makes life worth living. Putting them into isolation and removing this right for an extended period in the name of safety, is just cruel and barbaric. Having been through this crisis, we now have the experience required to prevent such a thing happening again." (Individual respondent)

"If a visiting standard was introduced it may encourage homes who have been reluctant or anxious about visitors coming back into the Care home to support visiting particularly when they have concerns about bringing in infection during a pandemic. Home managers have had an unprecedented amount of extra responsibility added to their workload and I can understand the cautiousness of some particularly if they have tragically lost residents to Covid. Managers need to feel supported and not blamed and this may help to do that." (Care home respondent)

"There is a wide range of evidence internationally that social connectedness is required for good health. Strengthening health and social care standards would help 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, thus reducing risk of complaints and calls from anxious relatives/friends etc." (Health body)

Q8 Other comments

Of the 155 respondents to Part 1 of the consultation, 75 provided additional comments at Q8. These referenced issues such as:

• The very substantial emotional and mental impacts on residents and their families of isolation over the last 18 months, often manifesting in significant physical deterioration for both
• The urgency of implementing standards or legislation so that the experiences of the last 18 months are not repeated
• The need to treat residents in care homes in the same ways as other members of society and to protect their human rights
• The importance of friends and family in caring for residents in care homes
• The importance of standards or legislation in providing clarity for all
• The constraints of staff shortages and an undervalued workforce

Many of these respondents also referenced their personal experience of the emotional costs and loss over the course of the pandemic, with personal stories of bereavement and loss of loved ones without being able to spend time with them.