Let’s Be Heard: Sharing Respondents' Pandemic Experiences, Impacts, and Lessons to be Learned in Scotland | Page 3

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This section of the report focuses on the answers to the first of Let’s Be Heard’s core questions: What would you like to tell us about your experiences during the COVID-19 pandemic?

Key ‘experience’ themes have emerged from the responses analysed thus far, which present a broad picture of how people were impacted by the response to the COVID-19 pandemic in Scotland. These key themes include, but are not limited to: rules, restrictions and measures, Scottish Government communication, key workers, personal protective equipment (PPE), healthcare, care homes and nursing homes, social care, death and dying, school and education, and long COVID. Broader themes also emerged during the research team’s analysis of responses. These include:

Inconsistency: Respondents indicated lockdown rules and restrictions seemed ever-changing and were inconsistently enforced. Respondents expressed frustration that these rules were enforced completely, sometimes or not at all. In relation to healthcare, respondents observed inconsistencies regarding who required shielding and around how information was communicated between staff and patients in hospitals and health centres, as well as between different health departments.

Polarisation: Respondents were divided in their opinions of lockdown. Some spoke in favour of, and others against, rules and restrictions such as staying at home, working from home and ‘bubbling’. Respondents were also polarised about the performance of the Scottish Government and other public bodies during the pandemic. Some believed the Scottish Government did a good job, while others thought it had performed poorly, and both positive and negative comparisons were made in relation to how other governments responded to the pandemic.

Deep discontent: Some respondents directed dissatisfaction, in the form of frustration and anger, towards institutions they felt had failed them. For example, they expressed anger around decisions that exposed care home residents to COVID-19. Some respondents also expressed anger at the NHS for reasons including a lack of in-person appointments, services being cancelled, receiving late diagnoses and not being allowed to visit loved ones who were ill or dying. There was also anger and frustration expressed by healthcare and social care workers at not having sufficient PPE. Other respondents said anger was directed towards them in their professional capacity, such as NHS staff, police, teachers and retail workers. 

Loss: The respondents in the analysed sample who experienced this most acutely were those who lost loved ones either directly to COVID-19 or due to circumstances related to the pandemic. Respondents whose lives were changed significantly by the pandemic also felt a sense of loss towards their previous way of life. This included students who could not continue or complete their education in-person, previously healthy people left suffering from long COVID and workers who lost their jobs due to the pandemic. More generally, loss was also felt by people who could no longer socialise and meet friends and family because of lockdown and other restrictions.

Concerns: Respondents raised concerns around the right to private and family life. This affected many key workers during the pandemic, for example care home workers who chose to live at their workplace to keep residents safe, and frontline workers such as police and firefighters who chose to live apart from their families in order to protect them. Many people were restricted from visiting family members in various healthcare settings, and in other local authority areas. 

Rules, restrictions and measures

Most respondents in the sample group described their experiences of navigating the different pandemic rules, restrictions and measures in place during the period which is being investigated by the Inquiry. These rules, restrictions and measures were implemented by different public bodies such as the Scottish Government, the NHS and local authorities. Participants shared positive and negative experiences of these, identifying those they felt had been successful and others which created barriers and challenges. These can be understood in more detail below:

Navigating the pandemic response

The responses analysed suggest that people’s experiences of, and views on, the pandemic rules, restrictions and measures fell broadly into three groups centred around positive sentiments, negative sentiments and those that were in between the two. 

Some respondents voiced support for the rules and restrictions. They acknowledged the difficult task facing the Scottish Government and felt its response was appropriate and effective. This sentiment is exemplified by one respondent, who said “they did the best they could” under challenging circumstances. The rules and restrictions were described as “clear” and “determined by medical and scientific advice and free from influence by financial interests or public pressure.”

On a similar note, another respondent commented: “Despite the confusion, I did feel that the message to stay at home, isolate and be really careful was clear.” The mother of a baby said she was aware that lockdown would be isolating but she felt reassured by the restrictions and believed they were the right thing to do. Another person commented: “I was happy to take the precautions laid out by the government and played my part.” 

Respondents who were critical of lockdown rules and restrictions were sceptical about the apparent danger posed by COVID-19. One participant set out clearly one of the more widely held views: 

Distrust about the nature of the virus led people to question whether measures such as testing, vaccinations and other restrictions were necessary. Respondents from the sample group wrote about “being forced into lockdown, mask-wearing and forced jabs” and questioned the reliability of tests and vaccine safety. In several responses, both the Scottish and UK governments were accused of not telling the truth about the virus and of using the pandemic as a pretext to extend their political ambitions. 

A third group of people were neither overly supportive nor overly critical. Their appraisal of the measures taken was qualified, agreeing with some and disagreeing with others. Their feelings about the rules, restrictions and other measures were influenced by the consequences of lockdown. By far the biggest influencing factor was their experience of being separated from their families and loved ones and having to spend lockdown alone.

Respondents told Let’s Be Heard how concerned they were about family members, particularly older family members:

Others said their family felt they sacrificed time together, which they “would never get back”. Parents expressed concern about the closure of schools and the lasting impact it had on their children. Some respondents felt schools should have remained open at least one day a week to allow children to see their friends and receive support from their teachers.

Enforcement of rules and restrictions 

Some respondents expressed frustration that rules were not properly enforced, while others questioned whether it was possible or realistic to enforce them all. An example of this was that respondents felt there was an expectation for people to ‘police’ others in their community. Other respondents highlighted what they saw as the “nonsense” (as described by one respondent) of employing people to stand outside public toilets to make sure only one person entered at a time.

It was mentioned by a range of respondents that rules and restrictions were constantly changing and there were inconsistencies in their enforcement. This is exemplified by the response of a radiographer based in a large hospital during the pandemic, who described their experience of rules being adopted and enforced in different ways by departments in the same hospital:

Media reports of senior decision-makers and leaders breaking the rules were a significant factor in shaping respondents’ views on this topic. For many, the response to this was a sense of anger and injustice. Respondents resented this “double standard”, whether real or perceived, and condemned the apparent hypocrisy of those concerned. 

Bubbles

Support “bubbles” offered people the chance to form extended households, in accordance with the rules at the time, to end isolation and make it easier to provide practical support to one another. This meant that individuals within one bubble no longer had to socially distance from each other and could visit each other’s homes. Respondents from the sample group described the isolation they felt before the introduction of support bubbles as “inhumane” and “tantamount to abuse”. The ability to visit family or have the option of living with others was described as a welcome measure. One parent explained that they had asked an older family member if they wanted to leave the bubble after their son returned to school because of the increased risk of infection. The answer was a resounding ‘no’.

Similarly, another respondent said: “I was able to live at my own flat through the week and visit my parents at weekends as part of my bubble.” Bubbles extended beyond family groups and included friends and neighbours, as was the case with another respondent: “I stayed at home with my husband and had a very small bubble consisting of my neighbour and her two children.” 

Many respondents also described the introduction of bubbles as a relief, with one respondent saying they were, at last, able to receive “support and help”. The only criticism was that bubbles were not introduced sooner than June 2020, as noted by one respondent:

Shielding

A small number of respondents shared experiences related to shielding. Shielding describes a set of measures introduced in March 2020 by the Scottish Government to protect people who were at the highest risk of severe illness or death if they caught COVID-19. People in the shielding category were advised to minimise contact with others to reduce the risk of being exposed to the virus. The programme also offered support services such as home visits, phone calls and online resources to help people stay safe and well. 

The experiences shared with Let’s Be Heard in relation to shielding fell into two categories: people dissatisfied because they were not included on the shielding list, and people talking about the impact of shielding.

Those who felt they should have been on the shielding list had a range of conditions, including asthma, myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). They felt shielding would have made it possible for them to work at home during the pandemic, reducing their risk of exposure. One person commented:

Another respondent, who was a healthcare professional, suggested the shielding category was not clear or well thought-out. Respondents also felt it was not clear who was considered ‘high risk’. The list was reviewed on a regular basis and clinicians were able to add people to the list if they deemed it appropriate.^[2] One respondent spoke to their GP about their condition and was eventually placed on the shielding list, suggesting that this system had some flexibility, though this was not made clear. 

Respondents who shared their experiences of being on the shielding list, or the experiences of family members, described it as “a difficult period” in their lives. One person said they were unable to get a supermarket delivery slot for six months and, as a result, were “forced to go out and be amongst people who may have been carrying COVID.” 

As shared by the Glasgow Disability Alliance and noted in its report, disabled people also faced barriers around the shielding list: “GP told me to shield but I never got a letter. Now my [food] parcels are stopping – but I’m still high risk!”^[3] Let’s Be Heard respondents explained how having to work from home because they were in the ‘high risk’ category negatively impacted on their workplace relationships. One person commented: “This has affected my ability in a new role, especially trying to establish those office relationships.” 

Families of those shielding spoke of their anxiety at not being able to see loved ones. One person described how their sibling, who was diagnosed with terminal cancer, died in 2021 after months of shielding without being able to see their family: “He had no life from March 2020 till the day he died because of lockdown restrictions for those shielding.” 

[2] Scottish Government, 'Shielding: A Way Forward for Scotland' (2020), p.7, URL: https://www.gov.scot/publications/coronavirus-covid-19-shielding-way-forward-scotland/ 

[3] Glasgow Disability Alliance, 'Supercharged: A Human Catastrophe Inequalities, Participation and Human Rights before, during and beyond COVID19' (August 2020), p.10. URL: https://gda.scot/app/uploads/2020/09/GDAa__Supercharged-Covid-19Report.pdf 

Accessing services 

For many people, accessing services was highlighted as a significant barrier across a range of critical areas such as healthcare, education, shopping, digital accessibility and employment support.

The most serious access issues that came from responses related to healthcare and dentistry. Many respondents said health conditions which predated the pandemic, or emerged during the pandemic, were compounded by the restrictions. For some, the consequences of not being able to access health services due to pandemic restrictions were stark, especially in relation to mental health, cancer journeys, and bereavement support. Notably, refugees and people seeking asylum in Scotland also found accessing health services a key barrier, as described by a cohort to Refugees for Justice in a 2022 report shared with Let’s be Heard.^[4]

Several respondents highlighted how dependent they were on being able to access local community facilities and shops. This was even more critical for people living in small communities or in rural areas: “The value of the local shop and benefits of a rural lifestyle were massive positives.”

A key concern for respondents during lockdown was the scarcity of online food delivery slots, forcing people to visit shops and potentially expose themselves to the virus when they would have preferred to stay home. This was particularly concerning for people living in rural areas:

This was even more concerning for people who had to shield. Some participants also raised concerns over the panic-buying they witnessed in some supermarkets and questioned why it was permitted for so long. 

[4] Baroness Helena Kennedy QC, 'Independent Commission of Inquiry into Asylum Provision in Scotland' (June 2022), pp. 26-27. URL: https://static1.squarespace.com/static/62af1289a666c80e00b17253/t/636b9190408f81778746eaa7/1667994032702/AIS+Phase+2+Report+Full.pdf

A small number of respondents spoke about the challenge of accessing testing, though they did not raise any concerns about effectiveness. For people living in rural areas, access to testing centres was a concern because it required access to transportation and journeys took considerable time. If not feeling well, having to make this type of journey was an additional challenge. In the words of one respondent: “I believe I had COVID, but couldn't get tested as I was too ill to drive to the testing centre 50 miles away.” 

Testing also proved difficult for people who were blind and/or partially sighted, as highlighted by a 2022 Sight Scotland report, which found that “self-testing lateral flow and PCR kits are also very difficult for a blind or partially-sighted person to use unaided, and there is a lack of support available to support someone to take a test.”^[5]

[5] Sight Scotland and Sight Scotland Veterans, 'The Impact of the Covid-19 pandemic on blind and partially sighted people' (2022), p. 7. 

URL: https://sightscotland.org.uk/influencing-change/reports-and-consultation

Vaccine rollout 

Experiences and views on the planning and rollout of vaccines were polarised among the sample group of responses. The delivery of the vaccination programme was seen by some as a success. One respondent said: “We got all our vaccinations smoothly and efficiently and have nothing but praise for the government info and organisations and NHS staff.” A few individuals highlighted the benefits to them, and others, of being vaccinated either at home or close to home.

Others found it challenging to access vaccination clinics and centres. Distances to vaccination centres were cited as a barrier in some responses, particularly by those in rural areas, and for people who were vulnerable and/or reliant on public transport. 

One particularly negative aspect of the vaccination programme highlighted by a number of participants was difficulty in booking and changing vaccination appointments. Particular health boards were mentioned as being especially good or especially poor in their delivery of vaccinations. There was a widespread feeling that people’s experience of the vaccination programme depended on where they lived: “It is good that there is a vaccine programme but again there were inconsistencies between health board areas.” 

Respondents also spoke about the challenges of having a centralised system for accessing vaccination appointments in Scotland. They said call handlers did not understand local geography and would allocate appointments without considering how close or accessible the vaccination centre was for local people. One participant explained:
 

Some participants shared different views around vaccine hesitancy. A few criticised social and workforce pressures to be vaccinated and a lack of informed consent, undermining freedom of choice:

Others described feeling stigmatised and isolated because they were reluctant to be vaccinated: 

Respondents who shared experiences of delivering vaccines said most individuals they encountered appreciated being vaccinated. However, they also reported that their workplace felt unhospitable and unsafe at times because of the way members of the public communicated their hesitancy around vaccines to them. 

Scottish Government communication

Respondents were polarised in their assessment of the First Minister’s televised briefings and of Scottish Government communication more broadly. Positive evaluations by respondents identified communication from the Scottish Government as being trustworthy and measured, and favourable comparisons were made to UK Government communications. Speaking to the importance of communication and trust, one respondent commented: “These [communications] were much better in Scotland than in the UK as a whole, which really helped me and others to feel confident about the situation and what was being done.” A similar sentiment was shared by another respondent, who said they “had much more confidence in the medical input from the Scottish CMOs [Chief Medical Officers] and Director of Public Health, a great communicator, than from those in England.”

There was praise for the then First Minister, with comments such as “she did an amazing job in a very difficult time.” Another stated: “The daily bulletin from Nicola Sturgeon was the only information I fully trusted.” The daily broadcasts were described as targeted at the correct level and the information provided was seen as clear and succinct. The fact that the First Minister fronted a large number of the briefings was commented on and commended by one respondent: “I cannot fault Nicola Sturgeon’s handling of a difficult situation.” 

On the other hand, many respondents felt the Scottish Government used its communications to score political points against the UK Government. One respondent said: “A decent politician would have put the welfare of the country ahead of party-political point scoring.” 

The relationship between the Scottish Government and the media was also a recurring theme. One respondent reported feeling that the Scottish Government and the media “belittle[ed] anyone who did their own research and decided they didn’t need a vaccine”. Several respondents felt members of the “public were bombarded with false reports” from the media with little room for dissenting opinions, with the perception, in the words of one respondent, that this led to more “public deaths and not once did the Scottish Government do anything about the media”. 

Several respondents felt it was useful to have up-to-date information about government rules and actions, but these became politicised by journalists asking non-COVID-related political questions. Others felt the daily press conferences became repetitive in their questions and answers. Respondents found this purported misuse of briefings as stressful, rather than informative. As one respondent put it, watching the news and the warnings felt like “fighting two battles for my life.” 

Similarly, some respondents felt the then First Minister relied on fear as a tool for changing public behaviours, expressing concern that “months of daily crisis warnings induced unwarranted fear.” Other respondents criticised public information campaigns for implying “they could kill someone if they didn't follow these complicated, contradictory and constantly changing [rules].”

Some participants who expressed gratitude for the daily updates nonetheless said they had caused mental health issues, because people “suffered severe depression attributed to the briefings”. One respondent said: “The TV campaigns were pure evil, creating fear and trauma,” leading people to experience severe mental health challenges. Another respondent described the briefings as “the daily beating of negativity and doom”, adding that they left them “in total despair”.

Key workers

Key workers delivered essential services, supported the vulnerable and assisted community resilience during the pandemic. Those given this status included workers in health and social care, emergency services, prisons, education and supermarkets. There were many responses focusing on the experiences of key workers throughout the pandemic – both first-hand and observational. Responses that discussed key workers largely described challenging working conditions and the pressures they encountered from legislators, employers and the public. Many responses also expressed immense gratitude for the sacrifices made by key workers.

Access to vaccination

Although the rollout of vaccinations to key workers was often praised as efficient, particularly by NHS workers, some social care workers felt prioritising vaccinations for frontline workers – those who worked at the ‘frontline’ of the pandemic treating people with the virus – would have reduced the spread of COVID-19 in essential workplaces. For example, a few individuals reported slower than anticipated access to vaccinations for people working in social care: 

Several police officers also expressed concern that they had not been prioritised for vaccination. These respondents reported feeling exposed while attending COVID-19 deaths, handling corpses, being spat at and having to physically engage with members of the public. An officer in a COVID-19 custody centre stated:

Access to childcare

The provision of childcare for the children of key workers was a significant theme in the sample group responses. NHS staff reported that their care responsibilities were overlooked, which put a huge burden on parents, often mothers. A pregnant doctor shared her experience:

Accessing childcare was reported as “challenging”. Where childcare was available, some described poorer conditions than before COVID-19, such as a lack of nappy-changing facilities. Others expressed frustration at precautions that got in the way of the wellbeing of children: 

Key workers also felt they were burdened with “unreasonable demands at home and work” as they tried to balance their family and job responsibilities. Experiences varied between those who reported receiving help (such as with school placements) and those who felt completely unsupported: “The only way myself and my husband could actually look after our children was by having COVID and needing to self-isolate and be off work.”

Some parents from the sample group mentioned arguments over childcare duties, especially when both were working. Many worried about the impact on their children’s education, adding that they felt guilty and that they had failed as parents. One respondent said working from home “led to an even poorer outcome for our younger children as we were essentially there but not available to them”.

Abuse from public

NHS/pharmacy staff, retail workers, police and teachers whose responses were analysed all reported some level of abuse specific to their roles. NHS/pharmacy workers mentioned increased paperwork, which directly impacted the amount of time they could dedicate to patient care. Overstretched GPs described being alone while facing angry (and sometimes violent) patients. GP practice staff felt threatened and unsafe dealing with people “demanding which vaccine they believed they should get”. One respondent said:

Pharmacists who reported taking on additional duties to cover for shuttered health providers described significant public abuse: “I felt abandoned, and I will never forget the verbal abuse we faced at all stages of the pandemic.” 

Respondents working in retail recounted being “abused by customers on a regular basis”. Retail employees highlighted safety concerns and expressed frustration with managers for not preventing customers from breaking regulations, such as shopping multiple times per day. However, shop managers said they felt unable to enforce these restrictions, or safety regulations, partly due to the abuse they received from customers when trying to do so.

Pressures of working on the frontline

Staff working on the ‘frontline’ of the pandemic were those whose jobs involved directly treating or dealing with people who had the virus. These workers were often exposed to the virus for long periods of time. Many frontline workers from the sample group mentioned long shifts, staff shortages and fear of bringing COVID-19 home to their families. Care home workers and nurses, for example, spoke of inadequate preparation and changing or inconsistent guidelines. Many participants described having to take on additional duties at work to cover services that had been suspended:

Some teachers from the sample group described online teaching as “a nightmare”, with pupils lacking equipment and/or not participating in classes. They said they had not been given the time or tools they needed to make the transition to online teaching. 

Frontline key workers said the pressures of conflicting responsibilities caused burnout and left them feeling they were being “treated like a robot”. According to some respondents in the sample group, not all key workers had the same access to PPE, vaccinations and childcare, leaving them feeling resentful towards other key workers who were perceived to be receiving preferential treatment. Some respondents reported being so profoundly affected that they resigned from their jobs or took early retirement: “We have been profoundly damaged by the pandemic and neither of us feel able to work full time, ever again.”

Key workers from minority ethnic backgrounds who were working on the frontline during the pandemic reported experiencing discrimination from their employers and members of the public. One respondent said that despite being at higher risk from COVID due to their ethnicity and a pre-existing health condition they were not supported by their employer. The respondent said their employer did not provide appropriate PPE or enforce social distancing in the workplace.

A report on the treatment of lower-paid minority ethnic workers in health and social care, published by the Equalities and Human Rights Commission in 2022, found that they were at increased risk. When compared with white or British workers, minority ethnic workers reported being assigned higher-risk tasks and being redeployed to COVID-19 wards. The same report also found that minority ethnic workers were subjected to discrimination by some patients:“18% of ethnic minority staff in all pay bands across the NHS reported experiencing discrimination from patients or other members of the public, compared with 4.6% of white staff.”^[6]

[6] Equality and Human Rights Commission, 'Experiences from Health and Social Care: The Treatment of Lower-paid Ethnic Minority Workers' (EHRC: June 2021), p. 8. URL: https://www.equalityhumanrights.com/publication-download/experiences-health-and-social-care-treatment-lower-paid-ethnic-minority-workers 

Personal Protective Equipment (PPE)

Responses from the sample group which discussed PPE largely focused on key workers’ access to, and use of, protective equipment. 

PPE was mentioned by many key workers, including those in the healthcare sector, care home workers, and workers from other public-facing sectors such as retail, education, childcare, community work, policing and transport. 

Respondents in the sample group frequently reported a lack of PPE available at the start of the pandemic and difficulties with procurement. One key worker said: “PPE was a disaster. It wasn’t available in full for NHS staff.” 

Some healthcare workers in public-facing roles reported not being given PPE, which they said had been prioritised for hospital-based colleagues. The equipment they were given instead was described as “ill-fitting” and “of poor quality”. Care home workers said PPE was rationed, reused and had to be borrowed or sourced privately by staff. One healthcare worker recalled: “During the initial phases of the pandemic, we had no PPE and were reliant on being able to beg or borrow masks.”

Other respondents who worked in community social care settings (outwith hospitals or GP surgeries) said they felt deprioritised when it came to the provision of PPE: 

Police officers in the sample group also reported a lack of PPE: “During the initial stages of the pandemic, I was required to attend suspected COVID deaths unvaccinated and without adequate PPE.”

Other key worker respondents referred to lax enforcement of mask-wearing in public settings. A teacher stated:

There were mixed feelings across the responses analysed about the effectiveness of facemasks in preventing infection. These views were not limited to key workers. Some respondents felt colleagues and members of the public did not wear facemasks properly or re-used them. A small number of respondents expressed the view that some varieties of facemask did not provide adequate protection. One respondent said: “The so-called disposable surgical masks used by so many could never provide the protection alluded to in the advice issued by the government.” 

Healthcare

Although a small number of respondents in the sample group expressed positive views on the NHS during the pandemic, many felt the NHS had failed to meet the standards they expected during the pandemic, was unprepared and had failed to communicate effectively: “The NHS was unprepared for [a] pandemic situation. It was chaotic, badly managed and badly organised.”

Communication challenges

Many respondents said poor coordination between different areas of the healthcare system affected their care and risk assessment for COVID-19. As mentioned previously, some respondents who expected to be assessed as being at high risk from COVID were not. Others noted that arranging prescriptions and making appointments to see a doctor were unnecessarily complex and stressful for patients and staff. 

Patients and their families faced challenges trying to adapt to new ways of communicating with healthcare staff. Respondents spoke about the restrictions in place between January 2020 and December 2022, which meant they were unable to have a face-to-face conversation with their doctor. Respondents felt guilty about asking a nurse to check on a patient or asking them to speak with a patient who did not have access to a mobile phone. Test results and diagnoses, which would have normally been shared in person, were communicated by telephone, leaving some patients feeling “devastated”. One respondent recalled their father being happy to receive a call from his mother, who had recently been admitted to hospital, “only to realise a consultant was sitting with her. They Facetimed my father to let us know my mother had cancer.” 

Communication within hospitals also became challenging, according to many healthcare workers from the sample group: "There was uncertainty and lack of clear instructions, particularly when most policy changes were spread by word of mouth from managers rather than the usual channels.” Many felt this way of communicating led to confusion as to how guidance should be implemented. This meant that guidelines were implemented differently across departments, according to the responses. A few participants noted these communication challenges resulted in a lack of oversight in keeping COVID-19 infected patients separate from other patients. 

Delayed and missed diagnoses

Several respondents described missed or late diagnoses with tragic consequences, often attributed to the inability of GPs to schedule face-to-face appointments – an issue that many report has continued. The Scottish Association for Mental Health also noted in its 2021 report, which was submitted to Let’s Be Heard, that the move away from in-person appointments was particularly problematic for the public.^[7] One respondent described how telephone consultations with a relative meant “the surgery [team] missed out on the fact he has diabetes. He had to have emergency surgery to have his leg amputated.” The inability to make an appointment meant that another respondent’s wife received a late diagnosis of lung cancer and she subsequently succumbed to the disease. Another respondent stated: “We believe that our mum may well have lived longer had the diagnosis come sooner.” 
 

[7] Scottish Association for Mental Health, 'Still Forgotten? Mental Health Care and Treatment During the Coronavirus Pandemic' (March 2021). 

URL: https://www.samh.org.uk/documents/Still_Forgotten.pdf

Coping alone

Many respondents recounted how they, or loved ones, were forced to travel by ambulance, attend hospital appointments, have major surgery, undergo cancer treatments or give birth alone due to COVID-19 restrictions. This was often described as deeply traumatic. One person noted: “My father-in-law went from cancer diagnosis to death almost completely alone, except for the final week.” A paramedic recalled: “I watched, often holding back tears as relatives said goodbye to loved ones as if it was their last time, every time we took someone to hospital.” Respondents described how families were not allowed to be with critically unwell patients but were briefly admitted to see them when they were near to death or had died. Many felt these restrictions lacked logic and compassion. 
 

Suspension of services

Responses frequently reported treatment being suspended due to COVID-19 restrictions, often continuing to the present. As one GP put it:

All NHS dental services stopped at the start of the pandemic in 2020 and some have resumed but without informing registered patients, according to respondents. One participant noted: “My children to this day have not had any of the normal periodic dental checks that were the norm before the pandemic.” Another respondent stated: “Health services were too focused on covid to the detriment of other services.” The severe negative impacts of delayed or cancelled medical treatment were also noted by the ALLIANCE and Age Scotland in reports shared with Let’s Be Heard.^[8]
 

[8] The Alliance, 'Health, Wellbeing and the COVID-19 Pandemic: Scottish Experiences and Priorities for the Future' (2021) URL: https://www.alliance-scotland.org.uk/lived-experience/wp-content/uploads/2021/02/Health-Wellbeing-and-the-COVID-19-Pandemic-Executive-Summary.pdf; The ALLIANCE, 'Humans of Scotland: Stories from people during COVID-19' (2021); Age Scotland, 'The Big Survey 2021: A Snapshot' (2021). https://www.alliance-scotland.org.uk/humansofscotland/stories-from-people-during-covid-19/

Care homes and nursing homes 

There was a mix of experiences shared among responses around care and nursing homes, including a focus on rules and restrictions, care of residents, transfer of residents from hospitals and the experience of losing loved ones in these settings. Care homes, in this context, are organisations which provide residential care for people who need extra support in their daily lives, such as older adults and people with additional support needs. Nursing homes, in this context, provide nursing/medical care in addition to personal care. The experiences in this section are shared from three different perspectives: those living in homes, those with family members living in homes and those working in these homes during the COVID-19 pandemic. 

Rules and restrictions in care and nursing homes

Several respondents discussed the ever-changing rules and restrictions placed on nursing and care homes in Scotland during the early months of the pandemic. While some described the guidance as “complicated and confusing”, others felt it was “well-communicated and sign posted”. A few responses from staff in care and nursing homes suggested it was difficult to put guidance into practice when it was “constantly changing” and there was not enough time to think about how best to implement it. Respondents with family members living in more than one care or nursing home also found it difficult to understand how the same guidance led to different practices in different homes. One respondent said she was allowed to visit her brother through the window at his care home but her mother, who was living in a different care home, “was not allowed to even see us on her 95th birthday, not even through her window or a video call”.

Numerous respondents said the implementation of rules and restrictions led to many residents in care and nursing homes feeling isolated. Several respondents considered the rules to be particularly distressing when patients were unable to understand their purpose, for example patients with dementia. A respondent who worked in a care or nursing home setting during the pandemic said:

Family members described how restrictions left their loved ones isolated and with “a very poor quality of life”. Adaptations such as window visits were described as beneficial when residents had capacity to understand the need for them, but confusing and distressing when they did not. 

There was concern expressed from a few staff members that the rules and restrictions placed on care and nursing homes were developed specifically for elderly patients. Some said the rules did not cater to the needs of other groups of people living in residential care, such as disabled people or those recovering from addictions. A member of staff who worked in a residential home for autistic adults said: 

Care of residents 

The experiences shared of care during the COVID-19 restrictions were mixed. Some participants said they felt staff were doing their best under difficult circumstances, showing appreciation for the care their relatives received: “I felt the care home staff were so sensitive and respectful even in the middle of a pandemic.” Others, however, felt the treatment of their relatives was poor: “The treatment she received in the nursing home was at best mixed. I will regret to my dying day allowing her to enter that care home.” 

Much of the poor treatment of residents was attributed to the restrictions put in place and staff shortages, limiting the ability of staff to provide the optimal standard of care. In their responses, people who worked in these care settings reported poor working conditions such as staff shortages, poor access to PPE, a lack of information and rules they did not feel able to implement: 

While the conditions were challenging, staff also reported the sacrifices that were made to maintain a decent standard of care for their residents: 

Transfer of residents 

Many respondents had negative experiences surrounding the transfer of residents from hospital to care and nursing homes without adequate testing. Only one response in the sample group felt the transfers were “something any sensible manager would do”, considering it an appropriate decision to make space in hospitals for patients requiring acute care. The remaining responses considered the decision to bypass testing at best “thoughtless” and at worst a “criminal” decision: “Sending untested elderly people from hospitals into care homes to ‘seed’ the virus there is unforgiveable.” 

Loss and death 

Many respondents shared the experience of losing family members in care and nursing homes. People shared the pain of being unable to be with their loved ones prior to their death or as they were dying. One respondent described watching their father pass away while “standing outside his window”. Other experiences related to death and dying are described in more detail later in this section. 

Staff in the sample group spoke of the significant loss of life they bore witness to:

Staff said that these challenges were exacerbated by loved ones being unable to visit. One staff member recalled the emotional toll of having to repeatedly telephone relatives to notify them of a death:

Social care: care at home and unpaid carers

Within the analysed sample, there were a limited number of responses from people providing unpaid care to family and loved ones and from people receiving care in their own homes. Unpaid carers are defined as a person of any age who provides unpaid help and support to wife, husband, partner, son, daughter, parent, relative, friend or neighbour who cannot manage without the carer’s help.^[9]

Respondents who did speak on this topic reported the emotional strain of caring alone for someone. One respondent, who was already caring for her husband, who had dementia, explained how difficult it was to get support during the pandemic when she also began caring for her sister:

Some unpaid carers reported they were unable to care for family members living far away due to their own health conditions and other caring commitments at home. They also spoke of the financial burden of not being issued with PPE as unpaid carers, and not qualifying for support if the person they cared for was not on the shielding list.

It should be noted that the experiences and views of individuals who identify themselves as unpaid carers are under-represented in this sample, and that future findings would be enriched by more submissions from this group.

[9] NHS Western Isles, Are you a carer? Information and advice for carers in the Outer Hebrides. URL: https://www.wihb.scot.nhs.uk/i-am-a-carer/what-is-an-unpaid-carer/

Death and dying 

Respondents shared experiences relating to death, dying and end-of-life care. There were some mentions of deaths related to COVID-19 but in many cases the deaths were attributed to other conditions, with several related to cancer. Individuals described how restrictions impacted their access to GPs and specialist care, delaying diagnoses. Participants also highlighted how restrictions had left them unable to provide comfort and care to sick and/or dying loved ones, as well as identifying an inability to provide support through grief.

Respondents also shared very personal stories, recounting their experiences of losing loved ones, and the heartache of watching them deteriorate over video calls or through windows. One participant described how her daughter, in her late 20s, was diagnosed with advanced cancer and died three weeks later without them being able to visit her in hospital. The only contact they had was through Facetime: “To watch your child slowly dying over Facetime is something no parents should ever have to go through.”

Several respondents shared similar stories of loved ones dying alone. In some cases, family members lived far away and were prevented from travelling to visit, while others were limited by hospital and care/nursing home restrictions: “Nobody should ever have to die on their own when they have a loving family desperate to be by their side.” 

While most responses discussed negative experiences in relation to end-of-life care, some also spoke positively about the care and attentiveness that healthcare and medical staff had provided to their loved ones.

Grieving 

Many people described the severe impact lockdown rules and restrictions had on their ability to gather with family for funerals and celebrations of life, and grieving after the loss of a family member or close friend. 

Families and friends being unable to gather to grieve together is described in responses as having ongoing impacts. These are described in more detail later in this report. 

Do Not Attempt Cardiopulmonary Resuscitation

‘Do not resuscitate’ (DNR) and ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) are medical orders that instruct healthcare providers as to whether they can intervene if a patient’s heart or breathing stops. Many participants expressed concern about the perceived pressures being placed on patients and their family members to sign DNR and DNACPR orders without being given appropriate information, or time, to consider the implications. The importance of DNRs was acknowledged by some, but they also stressed the importance of allowing a patient time to make an informed decision.

Additionally, within the sample group, there were a few respondents who expressed concern that DNRs were being assigned without any prior knowledge or patient consent. For example, some respondents shared instances of people finding out upon recovery that a DNR had been assigned without any consultation. One participant recognised that it might be “practical” to discuss DNRs in future, but the way in which the subject was raised was “inappropriate”. The same person commented that in one hospital “both doctors and nurses [were] asking patients/relatives to sign a DNR rather than consider putting one in place”. 

School and education

COVID-19 also had an impact on early years/pre-school, primary school, secondary school, and further and higher education. Responses in the sample group analysed include the perspectives of parents and pupils/students submitted by adults and children and young people.

Early years and pre-school

There were limited responses that discussed the experience of early years and pre-school care for children under five. The few respondents who did speak to these experiences reported that the closure of baby and toddler groups increased isolation for both parents/guardians and their children: “I and others with small children could not restart the toddler groups, drop-ins and other gatherings that are a lifeline to isolated people.” 

Furloughed parents/guardians, or those with free time, described enjoying the time spent with their young children during lockdown. A Place in Childhood, a report shared with Let’s Be Heard, also found inequalities between parents who were furloughed and parents who were not.^[10]

Responses from staff often described high levels of stress due to their perception that guidance for early-years settings was not prioritised. They also described last-minute changes to working practices, insufficient access to PPE and poor communication from local authorities. As one respondent noted: “Staff are still dealing with stress/anxiety/depression stemming from the immense pressure we were under.” 

Many staff also expressed concerns about the negative impact of pandemic restrictions on the social and emotional development of young children, with one staff member stating that delayed speech development and sleep problems are common among children born during lockdown.

[10] A Place in Childhood, 'COVID-19 for Children and Young People: Learning from Primary School Children' (2022).

Primary and Secondary Education

While a few respondents noted that schools tried their best, many felt the move to online learning was harmful to children’s educational, social and emotional development, and that gaps in learning and socialisation would be difficult to overcome: “Those who had support at home for learning have lost less learning than others, but all have lost the social skills.” In another report shared with Let’s Be Heard, A Place in Childhood also reported that remote schooling was taking a toll on children’s well-being.^[11]

Adults and children and young people from the sample group reported that the quality of online teaching was “inadequate”. However, some teachers noted that their efforts were not sufficiently recognised. One said: “We have been lambasted as ‘lazy’ and doing nothing during the two lockdowns. We worked very hard through it all, yet we haven’t had that acknowledged.”

In discussions about learning from home, some respondents felt it was unfair to expect families to teach children at home when many did not have the capacity or resources to do so. Other parents commented that furlough gave them the opportunity to support their children in learning from home. The wider impacts of these competing demands are discussed in the ‘changing family dynamics' section of this report.

Many responses emphasised the impacts on educational attainment and social development, as well as students’ increased anxiety around exams and attending school. One respondent said: “I don't feel education was prioritised enough, or the potential long-term effects on children given enough consideration, educationally, socially and mental health.”

Those with children with additional support needs reported a lack of adequate support. A respondent stated: “Both of my children are autistic. The lockdown broke our routine and has affected schooling beyond repair.”

It should be noted that Let’s Be Heard only received a small number of completed forms from school staff and that future findings would be enriched by more submissions from this group.

[11] Hamilton, J., & Wood, J., 'Children and Young People’s Participation in Crisis: A Research Report’ (A Place in Childhood: 2020). URL: https://aplaceinchildhood.org/covid-19-research-report-children-and-young-peoples-participation-in-crisis/

Further and higher education

Further and higher education in Scotland refers to post-secondary school education, typically in colleges or universities. Many students reported their studies had been disrupted due to factors such as family care needs (e.g., returning home to look after younger siblings) and being on the shielding list. Many respondents felt online learning was insufficient to meet student needs. Many also noted that students living alone experienced isolation, whereas those in busy households struggled to concentrate. Some felt this contributed to failing exams or modules, or to delays in completing their courses:

Online learning was particularly damaging for students in practical subjects, according to respondents. As one lecturer explained:

Other staff respondents outlined how hard they worked to support students, and the toll this took on their mental health. 

Long COVID

Long COVID signs and symptoms are defined as those which “develop during or after an infection that is consistent with COVID-19 [and] continue for more than four weeks and are not explained by an alternative diagnosis”.^[12] Respondents described their experiences of living with long COVID and detailed how the condition had transformed their day-to-day lives. As one participant stated:

Respondents suffering with long COVID overwhelmingly reported that they felt “abandoned” by health services. Many struggled to have their condition diagnosed or even recognised by health practitioners. One respondent said: “I had lasting symptoms of memory loss, fatigue, breathlessness which have now lasted over 3 years, but I was only recently told I have long COVID.”

When respondents were diagnosed with long COVID, many felt health services offered little support with the condition. Responses often conveyed a sense of hopelessness around how to continue with long COVID.

Some respondents with long COVID stated they were key workers and had contracted the virus at work. They expressed frustration and disappointment at what they perceived was a “lack of recognition for the sacrifices they had made”.

Those on the frontline who were from minority ethnic communities were also at risk of contracting COVID-19 and were more likely to be hospitalised, compared to people who described themselves as ‘white Scottish’.^[13] One participant noted that they were at particular risk because they were from a minority ethnic background, and that many minority ethnic doctors had died from COVID-19. They said they had contracted COVID-19 at work, struggled to return and when they did their manager refused to make any adjustments for their long COVID symptoms:

Responses detailed that further hostility was apparent when respondents from minority ethnic communities with long COVID received threatening feedback about their work performance, and questions about their plans to remain in Scotland after retirement.

Participants also mentioned that contracting long COVID had made them unable to work and had forced some into financial hardship or early retirement. One respondent said: “I am likely to lose my job soon and am worried about using my savings and being unable to pay my mortgage.”

[12] SIGN, Healthcare Improvement Scotland, 'Managing the long-term effects of COVID-19', URL: https://www.sign.ac.uk/our-guidelines/managing-the-long-term-effects-of-covid-19/ 

[13] Public Health Scotland 'Monitoring ethnic health inequalities in Scotland during COVID-19' (2022), p. 9 URL: https://publichealthscotland.scot/media/11979/pra_annual-monitoring-report-on-ethnic-health-inequalities.pdf