Sage Advocacy

The response to Covid-19 in long-term residential care facilities for older persons

Submission by Sage Advocacy

Introduction

Sage Advocacy is the National Advocacy Service for Older People. It also supports vulnerable adults, including survivors of institutional abuse and it supports healthcare patients in certain situations where no other service is available to assist. This submission on the Covid-19 evaluation is based on the experience and perspectives of Sage personnel working as independent advocates and trying to deliver the best possible service in a challenging environment.

Sage Advocacy, because of the involvement of its frontline staff with vulnerable adults throughout Covid-19, is well placed to have a good insight into what happened and why. Also relevant is the fact that Sage advocates are independent of the health and social care system and, therefore, in a position to make objective observations.

An Appendix included contains two vignettes which illustrate the issues referenced in the submission. These are based on Sage Advocacy casework.

Nursing home care: The challenges presented by Covid-19

The issues identified by Sage Advocacy relating to nursing homes broadly mirrors the findings of the various review groups – the Oireachtas Special Committee on Covid-19 Response¹, the Covid-19 Nursing Homes Expert Panel², HIQA³. These include inadequate clinical oversight in private nursing homes, a total lack of any protocols at the outset of the pandemic between the HSE and the private nursing home sector and the continued use of multi-occupancy rooms and outmoded premises in some nursing homes.

The major focus by Government, the HSE and the Department of Health at the outset of the pandemic was on preparing hospitals and Intensive Care Units for an influx of Covid-19 related admissions, with nursing homes (especially private nursing homes) and the residential care sector generally being largely forgotten. an effort to clear much needed acute hospital beds, dischargesto nursing homes were accelerated, with a high number of patients receiving transitional care funding for a long period. Sage Advocacy received feedback from nursing homes confirming that sometimes residents arrived in the nursing homes very late at night or during the weekend, without any prior assessment or adequate notice.

Casework during the pandemic showed that in certain situations, when the residents received transitional care funding indefinitely, there was no proactive engagement with professionals to clarify the status of those placements – as a result, many residents were not actively supported to return home or have the NHSS application completed.

Sage advocates received an influx of requests for support when the HSE began putting the nursing home on notice regarding the ending of transitional care funding for residents in receipt of it for a relatively long period. This funding had been put in place as a means of transferring people quickly out of acute hospitals at the outset of the pandemic.

There were huge staffing issues for private nursing homes both at the beginning of the pandemic and throughout, with inadequate support being available from the HSE. While some of these issues were eventually addressed by the HSE, staff shortages in private nursing homes and a heavy reliance on agency staff continued to be an issue throughout the pandemic.

As testing for Covid became the norm for both residents and staff in nursing homes, this resulted in many staff needing to self-isolate at home and nursing homes having to recruit agency staff. This was seen as compounding an already difficult situation as some of these agency staff worked in several different places of care in any given week. In addition, the use of agency staff inevitably created additional stress and was disruptive for residents because of not personally knowing who was going to be caring for them on any given day or night. In practice and in order to meet HIQA requirements and to manage continuity of care, there were no alternative options available to nursing homes.

Private nursing homes also highlighted to Sage Advocacy difficulties they had in attracting temporary staff, citing the fact that the HSE rate of pay was higher than the private nursing home rate. Also, while the Covid-19 social welfare payment was a very positive and necessary move to support people who became unemployed, a question arises as to what extent the payment contributed to low paid staff in the nursing home sector, e.g., care assistants and cleaning and catering staff, deciding to stay off work and apply for the payment.

Having to rely on staff from “outside” the nursing home was problematic for nursing homes. In this regard, it is noted that the Covid-19 Nursing Homes Expert Panel recommended that nursing homes should have a clear written back-up plan when regular staff cannot work or fail to turn up for work and that this should be incorporated into the nursing home’s preparedness plan for review by HIQA (Recommendation 5.2). The Expert Panel also recommended that during a pandemic staff employed by a nursing home should be precluded from working across multiple sites and that adequate single-site employment contracts should be put in place to support this (Recommendation 5.6). This is something that warrants focused consideration in planning for any future pandemics.

Sage Advocacy strongly believes that this recommendation should be implemented on an ongoing basis as far as possible.

Nursing home staff were perceived by Sage Advocacy as feeling isolated and alone and without clear direction. They also became overwhelmed with additional paperwork (e.g., NHI guidance information, HIQA reporting, applications for grants for PPE). Sage advocates had a sense of nursing home staff becoming exhausted because of the additional workload due to staff shortages and having to work extraordinarily long hours which became dysfunctional and unsustainable.

There was also the fact that staff were becoming increasingly anxious and worried about themselves, the people in their care and their families and were on high alert coming to work every day. Some Directors of Nursing reported to Sage advocates of being very fearful at times as they struggled to protect residents and staff and to reassure relatives.

The need for visitor restrictions in nursing homes was clear and many private nursing homes put in place visiting restrictions from early March 2020. This had been recommended by Nursing Homes Ireland (NHI) on 6^th March and was subsequently adopted as HSE and Government policy about a week later. While in many instances, nursing home residents were facilitated to remain in contact with relatives via video chats and proactive weekly updates from the nursing home, such arrangements failed to meet the needs of many residents and presented major difficulties for some relatives, particularly those with reduced decision-making capacity, as well as for their relatives.

Sage advocates noted at the time that Skype, Face Time and communicating through windows were simply inappropriate for many nursing home residents and, for some people, likely to add to their confusion, anxiety and distress. (Some two-thirds of nursing home residents are deemed to have some degree of dementia).⁴ Sage also became aware of situations where nursing homes were further restricting visiting because of staffing issues.

Some nursing homes adapted to the emerging situation and built in temporary spaces for visits and had in place a booking system for that. At times, visitors found this problematic, when no visiting time slots were available that would suit them, due to work or other care commitments.

There was a poor level of communication with relatives by some nursing homes regarding the status of the virus in the nursing home. As the number of positive Covid-19 clusters in nursing homes rose, some nursing homes were perceived by Sage advocates to have become more reticent about providing information and were not answering phones which put further stress on relatives seeking information on the level of Covid in the nursing home. The point was also made that pressures on staff almost certainly resulted in phones not being answered in some nursing homes.

Nursing homes with websites (which many did not have) were reported as having varying levels of Covid-19 information available with links to the HSE website. Some nursing homes set up a group text messaging service for families of residents and advocates with ongoing cases in these nursing homes which provided updates on developments. Other nursing homes had pre-recorded voice messages with updates on Covid-19.

HIQA Checklist for preparedness of nursing homes

It was the experience of Sage Advocacy that the HIQA self-assessment⁵ and protocol guidelines for residential care settings was perceived negatively by some nursing homes in that they saw HIQA’s regulatory and inspection role as not lending itself to providing the supportive role required. While some nursing homes found the HIQA Checklist useful, the view, as reported to Sage advocates, was that it came much too late. It was regarded by many nursing homes as reactive rather than proactive since it was April 18^th before HIQA was designated as the body responsible for assessing nursing homes’ readiness to deal with the pandemic and April 21^st before the Checklist was issued. This was six weeks after the decision to restrict visitors to nursing homes was introduced. Sage advocates also reported that some nursing homes considered the Checklist to be no more than another ‘tick box’ exercise in an already stressed workplace.

While it was acknowledged that HIQA plays an important role in monitoring standards in nursing homes, some nursing homes told Sage advocates at the time that without immediate resources to put in place HIQA recommendations, its usefulness in the Covid-19 crisis was somewhat limited. On the positive side, Sage advocates noted that in instances where they brought issues to HIQA’s attention, HIQA staff encouraged families of nursing home residents to contact them with any questions or concerns.

Involvement by Sage advocates in nursing homes

The support of an independent advocate was regarded by Sage Advocacy as critical for nursing home residents during Covid and Sage Advocacy continued to try and provide an advocacy service in nursing homes. However, this offer received somewhat of a mixed reaction with some nursing homes simply not engaging with Sage, others referring residents who could be helped by means of a telephone conversation and many using the link with Sage Advocates to articulate their multi-faceted concerns and fears for their residents and staff and the pressures they were under on a daily basis. Many of these pressures arose because of lack of HSE support initially, difficulty in getting adequate PPE initially and subsequently, an inability to roster a sufficient number of staff.

Sage Advocacy is in no doubt that, because of the lack of face-to- face independent advocacy support over a prolonged period, many nursing home residents (some of whom were already Sage clients) were put at greater risk in that their ‘voice’ simply was not heard for a prolonged period. In some instances, referral to Sage Advocacy only happened when nursing homes’ income from transitional care funding became problematic.

Also, in situations with complex family dynamics, the advocates were the ones liaising with different “sections” of the family, keeping them informed, as the nursing home would have only issued a message to one family contact.

Good practice in nursing homes

While there were many issues and difficulties that arose in nursing homes because of the pandemic, there were also good stories which need to be told. Clearly, there is learning for future practice here.

Indeed, some nursing homes told Sage advocates that they were receiving good support from the HSE and local GPs in the care of residents. Some Sage advocates reported having conversations with residents in nursing homes who were very happy with the care that they received during the crisis. There were a number of examples of good practice in nursing homes reported to Sage Advocacy.

These can be regarded as important lessons for dealing with any future pandemic.

• A rapid access team was set up in one nursing home to react to Covid-19 confirmed cases in the home;

• Three separate dining rooms (for its 20 residents) were set up in one nursing home to facilitate social distancing;

• Existing rooms were converted to ensure that each resident had their own room by making use of, for example, an office, a chapel and a hairdresser’s room as additional bedrooms.
• Another nursing home instigated a Covid-19 testing system for a staff panel that they might need to draw on as the pandemic evolved.

• Good practice was reported in an instance where in the case of death of a resident from a non-Covid complication, a room was set up downstairs where the family could have access without needing to enter the rest of nursing home.

• Regular Webinars were held in one CHO area connecting professionals from hospitals with those in nursing homes or those working in the community.

Private nursing homes in the overall long-term care system

Sage advocates through their work and through media reports became aware early on in the pandemic of the tension between private nursing homes and the HSE, particularly regarding the role of the HSE as a provider of PPE to private nursing homes and in its public health duty to address the clear shortages of staff in these homes. The nursing homes were represented as ‘for profit’ bodies who should look after their own PPE while Nursing Homes Ireland (NHI) believed that the HSE was negligent in not providing PPE to private nursing homes. It should be noted that the issue of PPE availability was largely impacted on by the limited market supply and the fact that the HSE as a bulk buyer could command priority purchasing.

The initial unilateral decision taken by NHI to restrict visitors was seen by Sage advocates as giving the impression that private nursing homes had a plan and were in control of the situation. This clearly turned out not to be the case. While nursing homes were not able to manage on their own, on the other hand, as it emerged, the HSE did eventually create sufficient linkages with the sector. This was a critical factor.

There was a lack of clarity as to who held the public health responsibility for nursing homes. Not having a direct link with nursing homes, the HSE and the Department of Health relied on HIQA which, while having an important regulatory and inspection role in respect of nursing homes, may not have the in-depth insight as to what the shortfalls would be in the event of a pandemic such as Covid-19.

While the pandemic was clearly a sharp learning curve for all involved, it is reasonable to suggest that Directors of Public Health Nursing who manage community services within a defined geographical area would have been much better placed to provide practical and clinical support to the nursing homes in their patch and, thereby, discharge the public health responsibility more effectively than happened.

Other issues relating to nursing homes identified by Sage Advocacy at the time were:

• The delay in introducing Covid-19 testing in nursing homes was a critical factor.
• There was competition for available PPE at the outset and lack of clarity as to where responsibility lay for providing the equipment to private nursing homes – this issue was eventually resolved when ad hoc collaboration between public health services and private nursing homes became the norm as the pandemic progressed.
• There was a perception on the part of Sage advocates at the time that, while the HSE eventually provided medical oversight, it did not put in care assistants or replacements for the latter when they became ill or took time off work to reduce the risk of infection for themselves and their families.
• According to Nursing Homes Ireland, private nursing homes did not get the support that they had been looking for and, if they had, they would not be in the position they were in.⁶

Acute hospital discharges

A proactive discharge policy was taken by hospitals in response to the crisis. This resulted in significant efforts being made to effect as many discharges of patients as possible in preparation for an expected influx of Covid-19 patients.

Indeed, the typical ‘delayed discharge’ cases associated with waiting for a Home Care Package or nursing home funding which had been a marked feature of the discharge process was no longer an issue.

In this regard, Sage Advocacy strongly believes that a key learning from the Covid experience should be that this flexible discharge approach should become the norm with provision for quicker access to home care packages and nursing home supports where the latter are assessed as necessary.

However, it should also be noted that this proactive approach to discharge at the time was problematic because of the absence of a robust Covid testing system. It is almost certain that that there would have been some transfers of Covid-19 positive patients to nursing homes and back to the community. Also, the asymptomatic nature of Covid-19 in vulnerable older people was not understood in the early stages of the pandemic. This point was highlighted by the Oireacthas Special Committee on Covid-19.⁷ There was also some commentary at the time about a higher than normal false negative in Covid-19 testing.⁸ The Covid-19 Nursing Homes Expert Panel recommended that all new nursing home residents coming from the community or proposed transfers from hospitals should be tested for Covid-19 prior to admission (Recommendation 4.1).

The impact of media reporting on how people experienced the pandemic

One line of media reporting which was facilitated by Government related to daily reporting on numbers. This, perhaps unintentionally, communicated a message that may have had a very negative effect on people who were more at risk of Covid, including, in particular, nursing home residents. Typically, figures for the number of deaths that occurred on any given day were accompanied by the statement that the median age of those who had died was late 70s or 80s and/or that many had an underlying condition. This additional information, while being a source of solace for much of the population who were fit and well and below that median age, undoubtedly sent out a subliminal negative message to older people in nursing homes who had an underlying condition. No doubt, this would have compounded their already existing angst.

Many nursing homes were experienced by Sage Advocacy as having been very concerned about their nursing home being caught up in the media frenzy and being on ‘front pages of the papers’, where the message might go out that they were non-compliant and failing to deal adequately with the Covid-19 threat even though they had no cases in their nursing home or were managing the challenge well.

The fact that many nursing homes were managing well with the resources at their disposal and having no or only minimal case numbers was not adequately reported in the media. This resulted in additional pressures on nursing homes, on residents and on residents’ relatives. While it was acknowledged that the unpreparedness of nursing homes should be highlighted, there was also a need for the media to publicise the fact that some nursing homes dealt with the challenge well.

Also, some nursing homes told Sage Advocacy that, while they floundered initially, they soon got on top of the situation and that this was not reflected in media coverage.

Media reports that large numbers of patients were discharged from acute hospitals to nursing homes to prepare for the Covid-19 surge almost certainly resulted in adding to the already negative image of nursing homes and a perception that they were being made warehouses for Covid-19 patients with all the associated risks, including death. There is a reasonable argument, based on the number of Covid-related deaths in nursing homes, that this perception was accurate, notwithstanding the likelihood that not all deaths categorised as Covid-19 related were actually because of Covid.

Mental health issues in nursing homes arising from Covid-19

Mental health difficulties and possible post-traumatic stress disorder were regarded by Sage Advocacy as becoming a huge issue in nursing homes following the pandemic – for residents, nursing home staff and families.

The isolation of residents in their rooms gave rise to serious concerns in relation to residents with reduced decision-making capacity who did not understand the need to isolate and why they should be confined to their rooms which was not their normal experience. Isolation was a particular concern for many smaller nursing homes, especially older homes with few single rooms and where residents had died from the virus.

Some nursing homes highlighted to Sage advocates the potential after-effects of restrictive practices – keeping residents in their rooms during the lockdown and exclusion of visitors. The mental health effects of being kept in one room for months were no doubt enormous (see below), particularly for those with dementia. Some nursing home staff expressed worries to Sage advocates about the human rights of residents in situations where they were being confined to their rooms.

While information booklets were distributed to every household that provided contact numbers for mental health support services, there was little evidence that people knew that these services were available or that they had any meaningful outreach into communities.

The potential mental health impact on health care professionals working in any Covid-19 environment (including nursing homes) is a matter that requires acknowledgement across the board. There was a clear need for additional counselling supports going forward for people in residential care facilities, health care staff generally as well as families in dealing with grief and coming to terms with what for many was a horrific experience. There is little evidence that such supports were put in place at a level commensurate with need.

Safeguarding issues

Throughout the pandemic, nursing home residents experienced significant isolation which affected their mental well-being. Many reported, particularly during the first and second lock downs of being confined to their rooms without any interaction with other residents, who were their friends, leading to feelings of loneliness and distress.

In a general way it is reasonable to state that people in nursing homes were at greater of getting Covid. This was a significant safeguarding issue in that some vulnerable adults did not need to be in nursing homes and were only there because of inadequate home care supports or as a result of an unplanned discharge from hospital.

It was also the case that HSE Safeguarding and Protection Teams only had skeletal staff available (e.g., one social worker in each county) and could not adequately respond to the high number of concerns being reported.

End-of-life care in nursing homes

End-of-life care in nursing homes presented additional difficulties during Covid-19 especially in relation to relatives not being able to visit. This was particularly difficult for families who were not able to have quality time with a loved one who was dying but who did not have Covid-19. Some families expressed concern to Sage advocates about how well pain was managed when they were not able to be present to monitor it. There was also a total lack of clarity for relatives as to what was permitted in terms of being with a loved one at end of life.

How Ireland responded to the Covid-19 crisis: Observations by Sage Advocacy

The following are some other general observations based on the Sage Advocacy experience:

• The extent of the virus and related deaths in nursing homes was a major shortcoming in our long-term care and support system. Issues at the beginning with PPE provision undermined the care system in both nursing homes and in the community.

• It is clear that that preparation by the nursing home sector (public and private) for what was well known at the outset to be a very infectious disease was inadequate.

• The fact that the HSE did not have a direct relationship with private nursing homes was a matter of huge concern which needs to be addressed.

• There was a significant underestimation of the potential effects of Covid-19 on nursing home residents with the primary focus being on ensuring that acute hospitals would be able to cope.

• The isolation, lack of physical contact with relatives and friends, coupled with fear and anxiety almost certainly impacted on the mental health and well-being of many nursing home residents.

• The lack of childcare for essential health care workers was identified as an ongoing issue which resulted in some people having to opt out of essential frontline work – this had a huge impact on the nursing home sector.

• The State, while slow to respond initially, did put in place a number of important mechanisms⁹ which helped to address the situation in nursing homes, including, in particular:
  • Enhanced HSE engagement with the private nursing home sector
  • Temporary HSE governance arrangements for some non-public nursing homes
  • Multidisciplinary clinical supports at CHO level through Covid-19 Response Teams
  • Access to supply lines for PPE, Oxygen etc.

In effect, the HSE moved from a position whereby the private nursing home sector (which was seen as an entirely separate system made of up of individual private entities (albeit with a statutory funding stream and regulated by HIQA) to a position whereby the HSE provided a significant level of support both nationally and locally in response to the crisis.

HIQA eventually established a range of contingencies and measures to ensure ongoing remote assessment of services and developed a quality assessment process whereby all designated centres were formally contacted on a fortnightly basis by an inspector of social services to assess how they were coping, and to identify any deficits in their ability to sustain a safe, high-quality service.

While the freeing up of acute hospital beds to accommodate Covid-19 cases was deemed necessary at the outset, this resulted in unplanned discharges to the community and to nursing homes – the latter almost certainly put people at greater risk of Covid.

Key consideration for the future

Arising from the foregoing analysis of the impact of the pandemic on nursing homes, Sage Advocacy wishes to make a general observation on the need for new models of nursing home care and for an integrated continuum of long-term support and care.

The important point has been made that living in a nursing home makes it intrinsically difficult to physically distance oneself and that “living with any concentration of people categorised as ‘vulnerable’ to the disease [Covid-19] was a disaster waiting to happen.¹⁰ This point is all the more pertinent because there is a relatively high proportion of people currently in nursing homes who would not be there if a an adequate home care support infrastructure was in place.

A centrally important point that needs to be noted by the Covid-19 Evaluation Team is that generic policy responses failed to take account of the additional and specific needs of people living in nursing homes.

A related question that needs to be addressed by the Evaluation Team is what additional HSE and HIQA inputs will be required on an ongoing basis to prevent the dismal scenario that emerged in nursing homes during the pandemic.

The stark reality of the nursing home experience for some people is illustrated in two vignettes based on Sage Advocacy casework included here as an Appendix.

Appendix: Illustrative Nursing Home Scenarios

Scenario 1:

Footnotes

¹ https://data.oireachtas.ie/ie/oireachtas/committee/dail/33/special committee on covid-

19 response/reports/2020/2020-07-31 interim-report-on-covid-19-in-nursing-homes en.pdf

² https://www.gov.ie/en/publication/3af5a-covid-19-nursing-homes-expert-panel-final-report/

³ https://www.hiqa.ie/sites/default/files/2020-07/The-impact-of-COVID-19-on-nursing-homes-in-Ireland  0.pdf

⁴ http://dementia.ie/images/uploads/site-images/DSIDCReport 439721.pdf

⁵ https://www.hiqa.ie/sites/default/files/2020-04/Assessment-framework-DCOP-covid19-preparedness.pdf

⁶ https://data.oireachtas.ie/ie/oireachtas/debateRecord/special committee on covid-19 response/2020-05-26/debate/mul@/main.pdf

⁷ https://data.oireachtas.ie/ie/oireachtas/committee/dail/33/special committee on  covid-19 response/reports/2020/2020-07-31 interim-report-on-covid-19-in-nursing-homes en.pdf

⁸ https://www.npr.org/sections/health-shots/2020/04/21/838794281/study-raises-questions-about-false-negatives-from-quick-covid-19-test?t=1594981639899

⁹ file:///C:/Users/Cloon/Downloads/74796 d09c1f51-435f-4b73-9433-923ce3d531f9%20(5).pdf

¹⁰ G. Quinn and A. Campbell https://www.irishtimes.com/opinion/nursing-homes-must-be-made-a-thing-of-the-past-1.4257422