VIEW magazine

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VIEW

An independent social affairs magazine

www.viewdigital.org

Issue 58, 2021

£9.99

HOW PANDEMIC EXPOSED OUR CARE HOME SYSTEM

INSIGHT: Relatives speak out about year of turmoil

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CONTENTS VIEW MAGAZINE – A social affairs publication with in-depth reporting and analysis The Big Interview Pages 4-5 We talk to Professor Gabriel Scally about his views on how Northern Ireland has handled the Covid-19 pandemic

‘Superficial’ report Pages 6-7 We team up with the investigative news site The Detail to look at a report commissioned by the Department of Health

Love for a mother Pages 8-9 Martina Ferguson writes about her love for her mother Ursula Derry who died from Covid-19 in January this year

Ageism highlighted Page 10 The pandemic has magnified the ageism in our society, says the Commissioner for Older People in Northern Ireland

Lockdown anxiety Page 12 BBC Spotlight NI reporter Jennifer O’Leary writes about a man’s concerns over his mum’s situation in a nursing home

Care providers Page 15 We talk to Pauline Shepherd, Chief Executive of Independent Health and Care Providers, about her views on the pandemic

The Danish way Page 18 Professor Tine Rostgaard talks to VIEW editor Brian Pelan about the key role the public sector plays in running care homes in Denmark

THE BIG PICTURE Making a complaint to VIEWdigital – https://viewdigital.org/social-affairs-magazineteam/

Window visit: During the lockdown of nursing homes in Northern Ireland, hundreds of relatives could only see their loved ones through window visits. Photographer Stephen Davison from Pacemaker took the above image of journalist Anne Cadwallader visiting her husband Gerry O’Hare at Fruithill Nursing Home in west Belfast. Read Anne’s story on page 13

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Editorial

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VIEW, an independent social affairs magazine

Guest editor Julieann McNally, founder member of Care Home Advice and Support NI (CHASNI) was both delighted and honoured to be asked by the team at VIEWdigital if I would be the guest editor for this edition of the magazine.

I am a passionate campaigner for safe and dignified care across the care home sector in Northern Ireland.

When Covid-19 was declared a pandemic I immediately knew that care homes would be a very problematic area. I was instantly worried about how the care homes would be supported and governed during the pandemic, and, potentially, this would have poor outcomes for the many thousands of older people that call them “home”.

I have been shocked by the 995 deaths of care home residents involving Covid-19 between March last year and February 26 this year.

Almost instantly we were contacted by families concerned after some care homes started to close their doors and ban visiting. This was accepted initially by families who were keen to protect loved ones but as the weeks and months rolled on, and window visits ceased, virtual visits weren’t being offered, and more and more providers weren’t engaging with families, we knew things were not good.

And that by denying older people those connections we would see a decline in health, well-being and cognitive ability.

Access to visits has been the main area of work for CHASNI over the last year.

After our grandmother, ‘Granny Annie’, was neglected at a care home in 2016, I, along with other families, reached out to many statutory and voluntary organisations to seek support in addressing our serious concerns about the standards of care and support for our relatives. We were on a ‘merry-go-round’ with no-one listening to our concerns.

We formed ourselves into an action group that led to the Commissioner for Older People (COPNI) listening to our concerns and this led to the Home Truths report. Since that time we have continued to receive contacts from families about their relatives’ situations.

This led me to look at setting up a voluntary organisation working

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Access to visits has been the main area of work for CHASNI over the last year alongside the care home sector and statutory organisations.

In his foreword to Home Truths, Eddie Lynch, the Commissioner for Older People in Northern Ireland, said: “The report is entitled Home Truths as it is my view that the investigation has uncovered the heart-breaking reality of the lived experience of the residents of Dunmurry Manor since it opened in 2014. It is essential that the quality of care provided to older people living in care homes across Northern Ireland is maintained at a high level.These are some of our most vulnerable older people and it is inexcusable for standards to drop to levels that can put their well-being at risk.

“It is vital that all the organisations responsible for providing care respond swiftly to the findings in this report to assure the public that it can trust in the care being provided to tens of thousands of older people across Northern Ireland.”

For almost five years we have been supporting families that reach out for support when it comes to anything related to care homes. It has been a pleasure to empower them and to give them knowledge, and help them in any way that we can. My personal journey with Granny Annie is what put me on this path and has allowed me to meet and support

wonderful people and their families.

These families have remained part of CHASNI as volunteers. They continue to support others that find themselves in similar situations. And so CHASNI was born.

In creating CHASNI we are creating a vehicle to work alongside the statutory organisations to fulfil COPNI’s recommendations. The volunteers working with CHASNI all have wide-ranging experiences when their relatives moved into a care home and many serious issues whilst they were living in a care home.

The work is not just about care homes but trying to improve all the systems around care homes, and recognising the rights of older people, listening to them and hearing the voices of families on their behalf. We also know the rising population of older people means that more people may need care and support.

CHASNI will ensure that older people and their families considering a move to a care home has: • Access to person-centred support and advocacy at crucial times including when moving into a care home or making a decision on a care home.

• Proper and open communication.

• An understanding of how care homes are financed and their contributions.

• Clear signposts and support with the complaints system.

• Familiarity with the safeguarding system and how it works.

• Knowledge and access to the organisations and people that are part of the system to support them.

• Support from families and people with experience of the system.

• Recognise and respect older people’s rights to remain in their own homes and look at improving the range of services available to older people to support this.

• Re-establishing the profile of older people and ensure all rights are at the centre of all decisions made.

We look forward to the future and embedding CHASNI as an organisation that gives a voice to older people and their families.

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the BIG interview Dr Gabriel Scally tells VIEW editor Brian Pelan why he believes that an all-island approach is needed to tackle the pandemic effectively, and why the care home structure in Northern Ireland, which has been ravaged by Covid-19, should be brought back into the public health system rian Pelan: We’re approaching one year of living under Covid-19. How, in your view, has Northern Ireland handled the pandemic?

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Gabriel Scally: I think the figures speak for themselves. It has been handled atrociously.

It gives me no pleasure to say that. I’m from Northern Ireland. I studied in Northern Ireland. I was a director of public health in Northern Ireland. And I care passionately about the health of people in Northern Ireland. I’m astounded that it has been handled so badly. There have been serious error after serious error.

Brian: What were these ‘serious errors’ that you have referred to since the arrival of the pandemic in the United Kingdom?

Gabriel: A major issue is the state of public health in Northern Ireland in terms of the health of the population and the state of the public health services. There has been a hollowing out of the public health capacity.

It meant that the public health system was seriously flawed coming into this pandemic.

Also, at the start, not watching what was going on internationally and taking appropriate action. We also failed to shut borders to new cases arriving, and stopping the testing and tracing in March last year, and not restarting it untill April. A central fault for Northern Ireland has been following Downing Street’s pronouncements. This was the major strategic error.

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Relatives should be involved in drawing up the terms of reference for any inquiry. They should also be consulted about who is going to conduct the inquiry and how it is to be conducted Australia. I understand that there are entrenched views but this virus doesn’t recognise borders.

Brian: Should there have been an all-island strategy in terms of tackling the pandemic?

Brian: Why, in your opinion, did care homes in Northern Ireland suffer so badly when it comes to the number of deaths due to the pandemic?

Gabriel:Yes. It has been well proven in this pandemic that islands have a major advantage. The principle of keeping a disease out is something that goes back centuries. Because of our island status, Ireland was perfectly placed to be as successful, in terms of protecting our population, as Taiwan, New Zealand and

Gabriel: I think when the data is analysed, we’ll also have to look at the number of deaths of care home residents in hospitals.

The reason that people are in care homes is because they are frail, vulnerable, and mostly elderly. We know that the care home system has been progressively

underfunded. We also know that the staffing of care homes is a major issue and that those jobs are ill rewarded and a lot of them are untrained, without career prospects. We know that the virus thrives amid deprivation, overcrowding and amongst minority communities. There was also an absence of infection control training and a lack of adequate PPE supplies.

Brian: Should there be an inquiry into how the pandemic was handled?

Gabriel: There should be an inquiry with many different arms to it, and there should be answers about what happened in care homes.

Brian: Should relatives who have lost loved ones in care homes have a voice in any inquiry that may be set up in the future?

Gabriel: Relatives should be involved in drawing up the terms of reference for any inquiry. They should also be consulted about who is going to conduct the inquiry and how it is to be conducted.

Brian: What needs to be done to combat future epidemics more effectively and protect people such as residents in care homes?

Gabriel: We have to invest in a public health system that works. It has to cover all the bases – communicable diseases, environmental hazards, smoking, alcohol, obesity, drugs and sexually transmitted diseases. It has to be embedded at the heart of government.

Northern Ireland needs to have a chief medical officer who has a public health background. We also need local directors of public health. We also need a multi-purpose plan for dealing with emergencies.

Brian: Are care homes with their present structures and design able

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Dr Gabriel Scally, former regional director of public health (RDPH) for the south west of England. He is a visiting professor of public health at the University of Bristol and president of the section of epidemiology and public health of the Royal Society of Medicine. He is a member of the Independent SAGE group, formed during the COVID-19 pandemic in 2020

Working in care homes should be seen as a positive career move.

People should also be rewarded in terms of good wages and pensions

to implement adequate infection control measures?

brought back under public control?

care home sector needs to be professionalised.

Gabriel: We are going to learn from this pandemic in terms of the architecture of buildings. We also going to need facilities where people can be properly isolated during an outbreak. There should be rooms that can house residents who are infected, and that if they are well cared for, including the wearing of PPE, the virus will not spread. Good ventilation is also extraordinarily important.

Gabriel: I think it should be brought back into public control. There are several reasons. One is about the issue of standards. All of our capital assets are going to require substantial investment which, in my opinion, is best done by the public sector. Having a low-skilled workforce when it comes to care homes is not acceptable anymore. We’ve got to create real opportunities for young people. Working in care homes should, in the future, be seen as a positive career move. People should also be rewarded in terms of good wages and pensions. The

Brian: Are you optimistic or pessimistic in terms of the future ahead in regard to dealing with this pandemic?

Brian: Do care homes, which at present, mostly operate under a private structure, need to be

Gabriel: I think it’s going to be a very rocky time ahead. I’m also very worried about the new variants of the virus. We have to continue trying to get the number of infections down and also trying to keep the virus out from this island. The need for an all-island approach is even stronger now.

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SPECIAL INVESTIGATION

Virus experts criticise ‘superficial’ report on hospital discharges and Covid-19 in care homes VIEW and The Detail team up to look at Department of Health commissioned research

By Rory Winters The Detail report which found no correlation between hospital discharges of patients into care homes and Covid19 outbreaks in care homes in Northern Ireland has been criticised by experts.

The Detail teamed up with VIEW magazine to assess the Department of Health (DoH)-commissioned report, produced by Dr Niall Herity – a Belfastbased consultant cardiologist.

Dr Herity sought to establish “if there was any correlation between hospital discharges (especially discharges in the absence of testing in early stage of pandemic) and subsequent care home outbreaks”, but he did not find any.

His research, published last November, doesn’t “support a hypothesis” that discharges from hospitals into care homes were a “substantial cause” of Covid-19 outbreaks in care homes in Northern Ireland.

In the last 12 months in Northern Ireland, more than 1,000 care home residents’ deaths have involved Covid-19, leading to calls for a public inquiry.

A DoH spokesperson said Dr Herity’s research “looked at data for discharges, as well as considering if there was any correlation between discharges from hospitals and infection rates in care homes” and that “the work could not identify any such correlation”.

However, Dr Connor Bamford, an expert in virology and antiviral immunity at Queen's University Belfast, said the report appears to be a “superficial analysis and needs to be followed up”.

He also told us that after “looking at what analysis was done” he was not surprised it took a “short time” – eight weeks or under – to complete.

Dr Bamford said: “I would have

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thought this would take time and a lot of effort on the part of numerous individuals with different expertise, such as clinicians, infectious disease experts, public health doctors, epidemiologists, and people who run care homes.

“I am concerned that there appears to be a lack of expertise required to look at this properly, so I do not think the analysis is as good as it could be.”

Another QUB academic, Dr Lindsay Broadbent, who specialises in respiratory viruses, also criticised the report.

She said that “data is taken at face value” without consideration of “other virology or epidemiology knowledge” of the virus that causes Covid-19.

Dr Broadbent said: “The author infers that the peak of discharges into care homes doesn’t correspond to the peak in

care home outbreaks and that there is, therefore, no connection.

“However, this does not consider the delay that would occur due to the virus incubation period. The peak of discharge into care homes was week 10-13, and the rate of outbreaks increased sharply from week 13.”

Dr Bamford added that the report’s format meant it could not establish “whether discharges from hospitals into care homes of an infectious individual then brought Covid-19 into care homes”.

He said: “You would need to do an indepth analysis of discharges, likelihood that individuals being discharged had Covid-19 or not, and care home outbreaks – all in the context of virus levels in the community."

Dr Bamford also said that the “size and duration” of Covid-19 outbreaks in care homes would also need “to be looked at”, but that this was not done for the report.

He added: “You could compare care homes or linked care homes (staffed by the same people) who accepted infectious discharges versus those who did not.

“You would also have to take into account availability of PPE for staff in care homes, that could exacerbate outbreaks. In my opinion this has not been done and has barely been attempted.”

Dr Herity’s report also sought to consider the “relationship (or otherwise) between departmental guidance” and the “clinical decision-making process in relation to discharges”.

The report concludes that “extensive communication was circulated” by both Minister Swann and the DoH throughout the pandemic and that “subjectively, consultants indicated that departmental guidance had minimal or no impact on their discharge decisions”.

This conclusion was drawn after an anonymous “short survey” was addressed

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Grim figures: Nearly 1,000 care home residents in Northern Ireland have died from Covid-19 to 130 consultants in the Belfast Trust.

Under one quarter of these consultants, 31 in total, responded.

The report says consultants were asked to consider the impacts of letters from the DoH on their decisions to discharge patients.

Dr Herity’s report concludes that of the 31 respondents, 14 consultants said “letters such as this have a minor impact" on their clinical decisions to discharge patients while 11 respondents said “letters such as this have no impact” on their decisions to discharge patients.

However, virus expert, Dr Broadbent, said: “The author does not state the responses from the other six respondents.

I would wonder about the distribution of discharges among these respondents.”

Permanent Secretary for the DoH, Richard Pengelly, sent correspondence – referenced in Dr Herity’s report – to each health trust chief executive on March 26, 2020.

The correspondence highlights the importance of hospitals implementing “effective discharge arrangements for patients as soon as they are well enough to leave hospital in order to release beds for newly-admitted patients”.

Mr Pengelly added that families would have to “accept that patients may be discharged to a nursing home that would not be their first choice”.

QUB’s Dr Broadbent referenced how “the sharpest decline in median length of

hospital stay” was immediately after Mr Pengelly directed this.

She added: “It is unknown what the median length of hospital stay would have been without the impact of the letter.”

In addition, further correspondence sent by Mr Pengelly in late April 2020, states that while patients should have been tested – “ideally” 48 hours prior to their discharge back into a care home – the results of these tests were not relevant to whether discharges should or shouldn’t take place.

This correspondence was also sent to each health trust chief executive in Northern Ireland, as well as the Regulation and Quality Improvement Authority (RQIA), Chief Medical Officer Dr Michael McBride, and Chief Nursing Officer Professor Charlotte McArdle.

The correspondence says: “This testing requirement must not hold up a timely discharge.”

Unlike Mr Pengelly’s March 26, 2020 correspondence, his late April correspondence is not referenced in Dr Herity’s report.

While the report was produced “at the request” of Health Minister Robin Swann, Mr Pengelly was to be provided with updates on the progress of Dr Herity’s work “as and when requested”.

Given the contents of both his March and April pieces of correspondence, we asked the DoH if there was any conflict of interest in Mr Pengelly being informed of

Dr Herity’s progress in this way, but the department did not respond to this.

The report also does not mention if the survey, sent to the consultants, made specific reference to Mr Pengelly’s correspondence from either March or April 2020.

Dr Herity previously faced scrutiny for a review he conducted into cardiac services in University Hospital Waterford.

The cardiologist defended this review before an Oireachtas committee, despite former Waterford TD, John Halligan, calling elements of it “outrageous” and “fundamentally flawed”.

The DoH also said that Dr Herity has previously done other “statistical analysis” for the department on elective care across Northern Ireland.

However, Dr Broadbent told us, Dr Herity carrying out this review, “seems like a conflict of interest” given he is responsible for discharging patients.

She said: “This report should have ideally been undertaken by someone that had no role in discharging patients or any role in hospital administration.”

We questioned the DoH about this and also asked whether a virologist, epidemiologist or infectious disease expert would have been more suitably placed, than a cardiologist, to produce this report, but the department did not respond.

Dr Herity also declined to be interviewed for this article.

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Together: Martina Ferguson with her mum Ursula Derry in happier times

I miss my best friend – my dearly beloved mother, Ursula Derry Martina Ferguson, who lost her mother to Covid-19, writes for VIEW about a traumatic time as visits to care homes were stopped during the lockdown could never imagine being separated from my mummy while she was still alive. It was an enforced separation.

It happened when the care homes went into lockdown.

My mummy was diagnosed with Alzheimer’s and vascular dementia in 2008, and, as most of you reading this will know – it really is a heart-breaking disease.

In May 2013, my mummy moved into Sandringham Care Home, managed by Four Seasons Health Care (FSHC). She lived there for almost eight years. For all these years it was all about my mum. I could see how her dementia was progressing and how vulnerable she really was. I visited my mum a couple of times

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each day, and my husband and I visited her every night at the care home.

We ensured we had the best time with my mum and we always managed to laugh and giggle. She was known for her giggles and laughter. She flirted, and loved her style and her lipstick.

Let me take you back to the first day of lockdown on March 23, 2020. It was truly a heart-breaking and difficult day for me. I arrived at the care home at 9am to visit my mum and was advised by the manager that the care home was going into full lockdown. I spent about an hour with my mum in her bedroom.

Not only am I my mother’s daughter, I

was also her stylist. My mum and I sat and laughed together. I made my mum look even more beautiful than she already was. I sorted all her clothes and cleaned her room (like I always did). I hugged her, held both her hands, and said: “I love you.” From that moment on, I decided I would fight for the right to be with my mum.

That week I remember contacting the Human Rights Commissioner; MLAs; the Department of Health; FSHC; the care regulatory body, the RQIA; the Commissioner for Older People NI; and even the Prime Minister, Boris Johnson.

We continued to visit my mum a couple of times each day, and every night at her outside window. At first, visiting her

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Martina Ferguson’s mum Ursula Derry in the care home. She died from Covid on January 4 this year. And, right, an empty chair after Martina returned to her mum’s room to collect her belongings window was particularly difficult – it was an emotional and traumatic time. Weeks and months passed. It was even more difficult as lockdown restrictions were lifted for society in general in July 2020, except for care home residents, who seemed to be the only people in our society that were ‘detained’.

My mother was admitted to hospital on July 5, 2020, after seizure activity. I remember arriving at the care home (with PPE) and the nurse advising that I was unlikely to be allowed into the ambulance.

When I asked the paramedics, I couldn’t believe it when they replied: “Of course you can sit with your mum.” It was the best feeling after being separated for 15 weeks from each other. I then followed the ambulance from the care home to the hospital, and thankfully staff allowed me to visit day and night, and to assist with feeding. On arrival, my mum was admitted to A&E. To my absolute horror, I found my mum’s personal hygiene and care had been neglected by the care home who were entrusted with her health, care and wellbeing. I felt so sorry for my dear mother because she was non-verbal so she couldn’t speak for herself. An Adult Safeguarding Investigation was raised, and recently, neglect was confirmed. My mum spent nearly two weeks in hospital in July 2020.

Setting aside all the sad feelings around her neglect, my mum and I genuinely felt like we were on holiday together and most importantly, we had that human touch again.

Following my mother’s discharge, I decided to take out a legal challenge relating to my mum’s human rights. This was made public in November 2020 when our solicitors, KRW Law, served pre-action letters and lodged papers in the High Court seeking application for a judicial review over the handling of care home visiting. My mother started this case and I believe the headway we got won’t be in vain. It will help others.

I also helped lead a care partner campaign for families and residents in care homes which we took to the steps of Stormont on November 21, 2020. This was a campaign to raise awareness, to end the separation and loneliness of families who had loved ones in care homes, and for the media to help highlight our stories.

A family friend of mine, singer Clare Hanna, dedicated a song (You Stood by My Side) to all care home residents. Clare was inspired after hearing the trauma I had experienced of not being able to visit my mum. The single and video was used to front our campaign – www.clanna.co.uk This was a very successful campaign and I think it’s fair to say that we made a difference.

Forty per cent of Covid-19 deaths have been in care homes. This is shocking.

In my opinion, this pandemic has exposed many failings. Let’s be honest, the wearing of PPE, IPC (Infection Prevention Control), and risk assessment training has been around for many years – this isn’t something new.

What has happened in private care homes should never be forgotten and should not have happened. It has left people with a chasm of grief. I truly believe a public care model for care home residents would be a better option for the vulnerable in Northern Ireland.It would mean people before profit. We need to make human-centred social care a 21st century reality.

My mummy tested positive in the care home on December 21, last year. She was taken to hospital two days later. It was a very worrying time. I was so glad to be by her side every day and night.

Sadly, my mummy didn’t recover from Covid. As I held her hand in the hospital, my mother took her last breath in the early hours of January 4.

I am sad and heartbroken.

There is no doubt the greater the love the greater the grief. I will hold on to all the funny and warm memories we shared together, all the laughs and all the giggles. I miss my best friend – my dearly beloved mother, Ursula Derry.

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I think this pandemic has magnified the ageism in our society Eddie Lynch, above, the Commissioner for Older People in Northern Ireland, talks to VIEW editor Brian Pelan ddie Lynch didn’t hold back when I asked him were older people in care homes failed during the pandemic?

“I think this pandemic has magnified the ageism in our society. I think it has flagged up issues that were there before, but it has really brought them out,” he replied.

“One of the most distasteful, in my view, of the past year, in terms of ageism, was in the early stages, the deaths in care homes were not being included in the official figures. I thought that was really disgraceful, because that sent a message that those people’s lives weren’t as valuable as anyone else.”

In a frank interview, the Commissioner offered his views on a number of questions about the impact of the pandemic on care home residents and their families.

“I think when you look back over it, there have been different phases of the pandemic in relation to care homes. And most care home were caught cold when the pandemic hit, and that’s pretty well documented,” said Mr Lynch.

“I think that the focus from the government was clearly on the NHS, ensuring that the protection was in place for the NHS to cope with the pandemic hitting our shores. What was very clear in the early stages is that many of the care homes were not well equipped to deal with this sort of emergency situation.

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“It was clear that they didn’t have enough personal protective equipment in the early stages. And I spoke to many care homes who were trying their best to get that equipment, but just simply couldn’t get it. So there’s no doubt about it, in the early weeks and months of the pandemic, care homes were exposed to the virus,” said Mr Lynch.

“Unfortunately, that led to many of the outbreaks that we saw, which ravaged through care homes in the early stages, which, unfortunately, led to many deaths.

Last year, both Les Allamby, from the NI Human Rights Commision, and Mr Lynch, spoke about the need for a ‘ring of steel’ to be placed around care homes.

Was that put in place, I asked?

“I think, certainly in the early stages, care homes didn’t have that level of protection. They struggled to get that support from authorities.This isn’t to blame the care homes.This is about that there wasn’t the preparation in place to make sure that the people living in those settings would receive the same level of protection as others.”

I asked was he concerned about the mass resignation of the Regulation and Quality Improvement Authority (RQIA) board last June.

“In terms of the board resignations, many families were, naturally very concerned about the safety of their loved ones. And they were also concerned about the scrutiny over care homes. For the board of that organisation to resign, en masse, was deeply unsettling for many families. I don’t think it helped to settle people’s nerves in terms of how care homes were being assessed, and what oversight there was for people living in them.

“I also think that the level of deaths is pretty shocking. But at the same time, we

know that if you do international comparisons, we have seen that there has been that situation in many other countries. The bottom line is this type of virus was deadly to older people. And, the way it spread, it meant that actually care homes were the one of the most vulnerable settings, because once it got into that setting, it was very difficult to stop the spread and to protect people. It’s a tragedy and the level of deaths have shocked everybody.

“We’re close to 1,000 care home residents having died of Coronavirus – in both care home and hospital settings. And that is just devastating for every family. My team has worked with hundreds of families over the past year. And it’s been just traumatic for them. One of the hardest things also for families is that they have been separated from their loved ones for long periods of time.

“One of the things that has to come out of this is the need for real support for older people in terms of mental health. We also have to see a stronger bereavement service for the people who’ve lost relatives during this pandemic.”

Mr Lynch also spoke about the issue of visits to care homes.

“This has been the biggest issue that my office has dealt with,” he said.

“My position is that visits should be facilitated in some way, unless it’s definitely not safe to do so.

“Homes need to be working with families and the authorities to make that happen,” he added.

On a final note, I asked the Commissioner would he support calls for a public inquiry into the number of deaths in care homes?

Mr Lynch said: “I think there probably is a need to have some sort of inquiry to look back on this so we can learn from the mistakes that were made.”

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‘It’s clear that some people were discharged from hospital back into care homes who had Covid’ Les Allamby, above, Chief Commissioner of the Northern Ireland Human Rights Commission, talks to VIEW VIEW: What’s your view on the restriction of human rights during the pandemic?

Les Allamby: I’d said right at the beginning of the pandemic, that human rights don’t take a back seat during a health crisis or a public emergency. The European Convention of Human Rights, for example, recognises that there may be circumstances where you can restrict freedoms, but they must be usually in accordance with the law. One of the circumstances where you can justify it is on public health grounds where it’s in the interest of the health of others. We have to recognise that we’ve been asked to give up rights that we’ve taken for granted for generations, probably the biggest restriction on our rights since the Second World War. Where care home residents adequately protected during the Covid-19 pandemic?

I think in overall terms, the Northern Ireland Executive has not done too badly, but this is one key area where errors were made. My analysis of this, when you look at the deaths up to the end of January, we’ve had over 900 deaths of people who were in care homes and who died there or in a hospital. I know, at the early stage,

there was the Department of Health’s view was that they took into account both care homes and the needs of hospital services at the same time. But what they didn’t do, in my view, was give the two sectors equal priority. Care homes were not a priority at the commencement of the outbreak of the pandemic. It’s clear that some people were discharged from hospital back into care homes who had Covid.

familes who are seeking access to their loved ones?

Where does this attitude to care homes come from?

Do you have any sympathy for relatives who have said that their loved ones are being treated like ’prisoners’?

The question about why urgent priority wasn’t given to people in social care in the pandemic didn’t spring from nowhere.

Nursing and residential care, in particular, have been ‘Cinderella’ services for decades.

We’re still no closer to dealing with questions of how we fund adequate social care in the community, and in nursing homes. The priority that we give to that sector and the people in that sector has always been relatively low. And that’s a malaise that I think is perhaps reflected in how we initially responded to social care and the residential sector at the start of the pandemic.

It’s about trying to negotiate between the family members and the home, a way through that is proportionate and recognises the right to family life, while at the same time protecting the health of other residents and staff. So you’re navigating a negotiated solution.

I absolutely understand the frustration of families not being able to visit their loved ones. It’s absolutely clear that being able to be visited by your family, particularly if you’re in a residential or nursing home setting, whether you have capacity or otherwise, is good for your well-being, both for the family members and for those being visited. So there is a cost in both human and health terms to not being able to visit.

It’s about trying to navigate the way through that.

Have the rights of care home residents and their relatives been infringed during the pandemic, specifically in regard to visits?

Would residents have better protection, in terms of their rights, under a public care model?

There should be no reason why homes should not be facilitating visits, in ways that protect staff on the one hand, and protect the person living in the home on the other, and family members who understandably want to visit.

Human rights does not require that it must be a publicly provided model, but human rights requires that the model meets people’s human rights, their dignity, etc. We’ve clearly moved to a much more prominent private sector model. The question is, whichever model you use, is that it must be properly funded.

What support can the Human Rights Commission provide to

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He said that he had felt a primal urge to break down the door and take his mother home, as she had once left a hospital with him as a new baby in her arms, 55 years earlier In June last year, BBC NI Spotlight broadcast its investigation of the Covid-19 care homes crisis. BBC NI Spotlight reporter Jennifer O’Leary, left, writes about how one relative came forward to express his deep concerns about his mother’s situation he phone call came one evening last April. The man had heard I was working on a Spotlight programme about care homes and he wanted to share his story. His mother was being cared for in a dementia unit of a care home and he was worried. His anxiety preceded lockdown measures.

He explained how he had previously raised concerns with the care home manager about hygiene practices he had observed, but in recent weeks, he was alarmed over what he deemed to be a scant supply of personal protective equipment for staff in the home.

In short, he said that he was consumed with a deep-rooted dread; that his mother would fall victim to Covid-19.

His dread was based on the fact that she had tested positive for coronavirus just days earlier.

His dread was heightened because he knew of other relatives who were denied

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the chance to say goodbye in person to their loved ones. He had already overheard the grief of one such family as they stood apart from each other and outside the care home the previous evening.

In that moment he said that he had felt a primal urge to break down the door and take his mother home, as she had once left a hospital with him as a new baby in her arms, 55 years earlier.

He did not wish to go public with his story but he remains by his own description, ‘lucky’, because his mother managed to survive the virus that took so many of her generation.

Contact from other families with similar stories of fear and trauma followed in the weeks after. So too did contact from distraught care workers in different parts of Northern Ireland.

Elements of their experiences chimed; they were grieving for residents they regarded as family who had died after

catching the virus. Some explained how they held phones next to dying residents so their relatives’ words of comfort might be the last voice they’d hear. One in particular spoke of how she and her coworkers took special care to dress those, who were becoming more ill from the virus, in their ‘best outfit’ before they died.

They also spoke of being deeply upset by what they had witnessed during what was then the first wave of Covid-19 but were also reluctant, at that point, to go public with their experiences.

The Covid-19 vaccination programme has ushered in a new sense of hope within many care homes. And insiders have come forward to talk about their experience of the first surge of Covid-19.

However, to fully shine a light on all of what has happened and why, more relatives of care home residents, along with care workers with first-hand testimonies, may yet choose to tell their stories.

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Window visit: Anne Cadwallader talking to her husband Gerry O’Hare

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Image: Stephen Davison/Pacemaker

‘Gerry will not be listed as a victim of Covid-19. But he is’

By Anne Cadwallader ike everyone, I have to fight back tears listening to heartbroken people explaining how they had to say farewell to their loved-ones by phone or on Zoom (or some other way of communicating electronically).

I was one of the very few lucky ones, however, who was at my husband’s bedside to say goodbye during this wretched pandemic.

Gerry was the ultimate social being.

He lived to keep friends and family enthralled with his story-telling. Laughter was his lifetime’s tonic. He needed people around him, to love and be loved.

Despite having final-stage Parkinson’s, and being resident in Fruithill Nursing Home in Belfast, up the street from our house, we would push his wheelchair down home every day.

When lockdown came in mid-March 2020, all that came to a grinding halt – but we promised him a few days in Donegal in the summer “when it was all over”.

The weeks dragged on and became months. I visited him twice a day, standing on a stool so I could shout at him through three inches of open window. I knew I was distracting staff from other duties to open the side gate – but I also knew this was Gerry’s lifeline.

The staff helped set up a device that allowed me to play Gerry’s music of choice – he generally started his day with Bob Marley’s Three Little Birds.

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As the weather improved, the staff turned a courtyard into a welcoming space with colourful sun-brollies, tablecloths and hanging flowers. By appointment, weather permitting, relatives could visit their lovedones, socially-distanced, and in full PPE. One wonderful July afternoon, on hearing a passing ice-cream van, I ran out and bought a soft, whipped ice-cream cone, the kind that older people find so much easier to eat than the standard block kind, straight from the fridge.

All the residents and staff, that sunny afternoon, enjoyed their ice-cream. A few blessed moments of near-normality.

In August, Gerry and I were allowed six guests to celebrate our 30th wedding anniversary in the courtyard. The staff baked a fabulous cake, blew up dozens of balloons and set up loudspeakers so we could “party the afternoon away”.

As autumn winds began to blow, the staff set aside a sterile zone for onceweekly indoors visiting (again socially-distanced and in full PPE and only after visitors’ temperatures were checked).

It wasn’t the same as a visit to his own room but it was certainly better than nothing.

Gerry’s weight loss became critical.

The long months of near-isolation (with no sign of any visit to Donegal in the offing and no date for an end to lockdown) had taken their toll. He had virtually stopped eating. The nursing home then showed its flexibility and kindness once again and designated me, with the support of the

Trust, as an official “care-giver”. I knew Gerry would still take food from my hands and I was allowed extra visits to feed him.

His weight loss slowed and I began to pray that we had beaten the black pit of depression into which he had fallen.

Those hopes were dashed when his oxygen saturation levels suddenly dipped.

He spent 36 hours on a trolley in A&E and then five days on a busy ward with no visiting, and therefore no eating. It was all too much for him and – by the time he returned to the familiar surroundings of the nursing home, we couldn’t save him.

Like many others, Gerry won’t be listed as a ‘victim of Covid-19’. But he is.

The mental suffering caused by the nearisolation was too much to bear.

I was at his side at the end, fully clad in PPE but there nonetheless. I kept the vow – “In sickness and in health, ’till death do us part” – that we made in 1990 at Belfast City Hall.

I am still heartbroken but I am thankful I was there for him. Others were not as fortunate.

What do I take from this? Simple.

If there were sufficient staff – carers on the ground – to allow for a full focus and real commitment to the mental wellbeing of nursing home residents, then people who deserve to die with a lovedone at their side, would not have had the miserable, agonised, lonely deaths they undoubtedly did during this accursed pandemic.

It’s not rocket science.

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I just put my arms around her and we had the biggest cuddle you could ever imagine Keith Gray made headlines when he launched a judicial review over the temporary halt to on-site inspections by the RQIA at care homes in Northern Ireland during the early stages of the pandemic last year eith Gray’s obvious love for his mother is totally apparent within a few minutes of talking to him. The fact that she has dementia makes it all the more poignant.

Last year, he, along with the support of the law firm KRW and Care Home Advice and Support NI (CHASNI), launched a judicial review into the decision by the Department of Health that on-site inspections of care homes by the RQIA should be temporarily suspended.

In a statement on April 29 last year, the law firm KRW said: “Today we have lodged an application for leave to apply for judicial review of combined decision making by the Department of Health and RQIA which has impacted on the life of a care home resident.

“Our client Briege Evelyn Gray, who suffers from dementia, is a resident in a care home in Castlewellan.

“The Department issued a direction to RQIA which resulted in both the reduction of the number of inspections followed by a decision to not to inspect at all.

“For the many care home residents and their families right across the country this has increased their already high state of anxiety caused by the current Covid crisis.”

Mr Gray, at the time, said: “I am at my wits’ end over this. My mother, like hundreds of other residents, is vulnerable and her life is now at grave risk. I want proper inspections and full oversight but it may be too late.”

The High Court challenge to reducing the number of inspections at care homes in Northern Ireland was ended after the directive was rescinded. Mr Gray’s legal costs were also paid by the Department of Health.

Mr Gray told VIEW of the pain caused by not being able to have visits to see his mother Briege in the early stages of the pandemic when care homes closed their doors.

“It's heart-wrenching. It goes to the pit of your stomach because you want to make sure that they are being treated properly. They can tell you on the phone that your mother is been treated properly and is well, but I needed to see it with my own eyes.”

Mr Gray said: “I’ve struggled in my life. I have used food banks, I’ve been homeless and I was hungry for a couple of months. My mother is the kindest woman you’re ever likely to meet. She and other residents need to be treated with respect and dignity. They were, in my view, being treated like an afterthought, and as a burden on society.

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Keith Gray with his 74-year-old mother Briege Gray “My mum was diagnosed in 2012. It was really difficult having online conversations with her during the lockdown.

“It was a big decision to take on the legal case, but I don't regret it. I was vindicated because the Department of Health paid my court costs.

“My mum is now in a care home in Dunmurry. I wanted to get her moved so that she would be closer to where I live.

“My father died on December 2, 2006. He also had dementia.

“I cried when I was able to physically visit just before Christmas last year. Even though I was wearing full PPE, including an apron and gloves. I’m convinced that she recognised me. I was able to get in to see her under the care partner scheme.

“I just put my arms around her and we had the biggest cuddle you could ever imagine. It meant so much to me.”

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We talk to Pauline Shepherd, Chief Executive of Independent Health and Care Providers, about her views on the pandemic, how it was handled in the early stages, and the challenges facing funding adult social care

‘The first guidance that came out from Public Health England horrified me’ VIEW: What was the situation facing care homes like at the start of the lockdown?

Pauline Shepherd:There was an awful lot of uncertainty and a lot of unknowns. I think that the Department of Health and the wider health system had the view, initially, that it would not really impact on care homes. The first guidance that came out to us, horrified me, where the guidance from Public Health England was actually saying, this virus is unlikely to impact care homes, I think at the start of the pandemic, that attention was very much on preparing the hospitals. And I think the attention wasn’t given to the older, most vulnerable people in society.

How fearful were care home owners and staff last March?

Owners and people running care homes knew that it would impact them. I’m aware of care home owners and care home providers actually making their own PPE. The initial advice was if you don’t have symptoms, you don’t really need to worry. But we knew that Covid-19 was going to get into care homes. And when the first few cases hit, providers were out seeking any PPE that was possible, and some care homes even made their own makeshift PPE. What was the response from the Department of Health and health trusts at the start of lockdown when care home providers were asking for PPE? There was a group set up (the Health and Social Care Northern Ireland Business Services Organisation) to look at PPE. And we had a representative on it. But they were very much looking at PPE for the hospitals. We said that they needed to build in PPE for care homes. At that point, the response was very much that care homes were private businesses and it was up to them to procure their own PPE, and

if they couldn’t get it, then come back to the trusts.

When did the situation ease in terms of getting adequate supplies of PPE? I would say it was a matter of weeks.

Were residents discharged from hospitals without being tested for Covid at the start of the lockdown?

Yes. Initially there was there was no testing and then they issued guidance that said residents had to be tested within 48 hours of discharge to a care home But the guidance also said that not having those test results back, shouldn’t delay discharge.

The precautions taken by care homes was that every person that was admitted was put into isolation.

Should the RQIA have paused physical inspections in the early stages of the lockdown?

We were arguing at the time that the footfall should be reduced into care homes, and therefore you were reducing visiting unless it was for end of life. We would have supported the decision to pause inspections. We agreed to have them paused until people were tested for Covid.

Our whole argument was that anybody coming into a care home should be tested?

Why are some providers recognising the care partner scheme, whilst others are not?

Because each care home has to do what’s called a dynamic risk assessment. There will be some care homes who will be very worried about Covid coming into a care home and who may be a bit more hesitant.

The care home sector was also told to do it (the care partner scheme), and were not engaged in the discussions about how it was going to be done and what

implications it had. There was also insurance issues for some care homes.

My view on it was that we fully accepted that there needed to be visiting, we fully accepted the pressure on residents, staff, and families. However, the current partner rule was only going to fit maybe a small number of families. What we should have been looking at was how do we enable safer visiting? We need rapid testing, so a visitor can book an appointment, be tested, whenever they come to the care home door, and within 10-15 minutes, if they’ve got a negative result, then they can visit.

You said, in an article in 2019 for Agenda NI, that “Adult Social Care is in deep crisis which is worsening by the day.” Has the pandemic worsened the situation?

My view on it is that we’re going to have to do an awful lot of work to try and encourage the public in Northern Ireland to see that care homes are a safe place to work. And care homes are a safe place to put your family member. We also need proper support for care homes, proper staffing levels, in order that people will be cared for to the highest standard.

What is your view on how we should fund health and social care in the future?

This issue actually goes back to a political level. Do they need to start looking at a different funding model, which I think they do, for health and social care going forward? Because I don’t think the public purse will continue to fund it. And is that health insurance? Is that all of those very controversial political decisions that are going to have to be grasped?

Should there be an inqury into care home deaths?

It’s inevitable that there will be an inquiry into what happened overall. We need to learn lessons from this pandemic.

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Grace Stirling has been in a care home in Coleraine for nearly three years

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My mum is 91, I’m 63.

And we’ve never been separated. I felt guilty.

I felt I had abandoned her

By Brian Pelan he ability to communicate online has been a wonderful technological development but it can never really replace physical interaction and the power of touch.

Helen Stewart had been visiting her mother, Grace Stirling, regularly at a care home in Coleraine until the lockdown started last March.

Helen spoke to VIEW about her mother and the ordeal of regular face-toface meetings being replaced by window or virtual visits.

“My mummy worked in Desmonds shirt-making factory in Claudy, Co Derry.

She is 91 years of age and was born on August 18, 1929.

“She was raised in Straidarran, which is about four miles from Claudy. She started work around the age of 14. My mum was 27 years of age when I was born and she gave up work then. I have a brother who is a year younger than me. My father was a wonderful man. He was born on January 20, 1921. He died in December, 2018, at the ripe old age of 98. They were wonderful parents. My dad was in the RAF as a young man.

“My mother didn’t like travelling,” said Helen. “She was a home bird. She liked going to Buncrana or Portrush for holidays. We had a simple life with no fancy holidays.

“She is a very private lady. Mummy has been in a care home in Coleraine for nearly three years now. She has congestive heart failure and chronic kidney disease,

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Ordeal: Grace Stirling but is still fully compos mentis though.

“I’ve been trying to get in to see her since last September. Julieann McNally, from Care Homes Advice and Support NI (CHASNI), contacted me and asked did I have a loved one in a care home because she had read my tweets about my situation.

“She helped to set up a Zoom meeting with the care home. I am now being tested in order to become a care partner. That is all down to Julieann’s help and support. She is a remarkable woman.

“I haven’t had a proper visit with my mum since March 16 last year.

“I have though being able to take her out of the care home a few times. I felt it was important to try and protect my mother’s mental health.

“I didn’t partake in the window visits for about four months at the start of the pandemic. Everybody was scared. We didn’t even see other members of our family. In July last year, I asked the care home if I could have an outside visit because it was lovely sunny weather. I felt that mum would benefit from seeing me and being outside in the fresh air.

“Eventually they brought my very frail mummy outside. We also met her again outside the care home to celebrate her birthday. The weather was very cold but we made the most of it. She was also with us for Christmas Day for about 10 hours.

But since then she has deteriorated. The lockdown has had a huge effect on her. We only communicate by me standing outside her window of her room and we try and chat over the phone sometimes.

“Sometimes she will hit the red button, which switches the phone off. And she doesn’t know how to get it on again.

“I try to keep some sort of visual contact with mum as I believe it’s really important for her. Sometimes she will ask me to take her out of the nursing home.”

I asked Helen what had been the impact of this ordeal on her.

“My mum is 91, I’m 63. And we’ve never been separated. I felt guilty. I felt I had abandoned her,” said Helen.

“I’m concerned that my mum might take ill and have to go to hospital.

And would she start to show signs of end of life? All sorts of things have gone through my mind over the last year. Thank God, so far, she has not needed any hospital care.”

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VIEW editor Brian Pelan talks to Tine Rostgaard, (a professor at Roskilde University, Denmark, and Sweden), about how nursing homes in Denmark have coped with the pandemic and the country’s public sector approach when it comes to the provision of adult social care ebruary this year witnessed the lowest number of positive Covid-19 tests amongst residents of care homes in Denmark since November last year.

The falling numbers may be, at least to some extent, a reflection of the status of Denmark’s Covid-19 vaccination programme. During the first wave in March 2020, the country went into a strict lockdown and low numbers of deaths were recorded in nursing homes compared to other European countries, including the United Kingdom.

I spoke to Professor Tine Rostgaard recently to find out how Denmark had set about protecting its nursing homes.

“We have almost completed vaccinations across all nursing homes,” said Professor Rostgaard. “There has been some delays, especially in Copenhagen – a number of residents have not taken the vaccination, either because they were ill at the time, or because they were against taking the vaccination.

“Unfortunately, a number of nursing homes have been hit recently. Denmark quickly introduced a lockdown last March.

And it’s been quite restrictive in opening up. We’ve been in a in a complete lockdown since December 27, unfortunately, because of the British mutant of Covid-19.

“I don’t want to be put in the same league as Trump calling it a ‘China virus’.

But this has really meant, because of the the spreading, that nursing homes have really been affected. Staff and residents are affected right now to a much larger degree than last spring.”

I asked Professor Rostgaard to explain what the Danish care model looked like, “We have a universal model where it’s very much the public which is in charge of financing, organising and providing care.

And that means that we have a very small for-profit sector. Only around 1.5 percent of nursing homes are for profit.

“Around three to four percent of people, aged 65 and older, live in nursing

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Professor Tine Rostgaard A report last May by Professor Rostgaard said: “The foundation for longterm care services for older people in Denmark is the Nordic public service model, with the municipality being responsible for the organisation, financing and provision of health and social care services in nursing homes and at home.There is strong electoral support for long-term care for older people, stronger than for all other traditional welfare areas. In comparison to other countries, services are relatively affordable (or as is the case for home care, entirely free), attractive, available for all citizens, of high quality and flexible in the sense that they should be person-centered.”

The report added: “Also, older people and their needs as well as the needs of informal carers are strongly advocated for by Dan Age (Ældre Sagen), a non-profit organisation. Around 900,000 persons, or 16 percent of the population, are members of this organisation.”

Whilst the United Kingdom has largely adopted a private care model, it seems that Denmark, at present, still has a public care system, I said. homes. The quality is high.

“Yes,” said Professor Rostgaard. “The “In nearly all our nursing homes today, Nordic countries are much more public you have your own apartment. So you based, and very much focused on don’t share a room, and you also have universalism, social rights, and affordability.” your own bathroom facilities and a I asked the professor about the types small kitchen. of health conditions which care home “We have a relatively high proportion residents in Denmark have. of staff who have formal qualifications in “We have people living at home with hygiene and health and social care milder forms of dementia. And maybe education. I think that helped very quickly there are also times where a nursing home in the spring, getting staff to understand is necessary. We do have a high proportion the precautions that were necessary. of people in in nursing homes who have “Long-term care in Denmark is high dementia. Some of them have a formal on the agenda for people. If you ask voters diagnosis, but others are just suspected to during local elections, what should we have a dementia because often it can be prioritise in terms of policies, they, over difficult to make the diagnosis.” and over again, say it’s long term care. I As calls increase for a radical look at would interpret it as being because people the provision of adult social care in the are really interested in that the quality of United Kingdom, voices such as Professor our society is whether we can protect Rostgaard are vital in the ongoing people and provide them with a quality of discussion about how we, as a society, look life in later life. It’s very important to the after our older population. public that people are looked after.

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We have a universal model where it’s very much the public which is in charge of financing, organising and providing care

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COMMENT

Pandemic exposed care systems Ann Marie Grey, Professor of Social Policy and Co-Director of ARK at Ulster University, argues that there needs to be a fundamental transformation of adult social care t has been widely reported how, in many countries, the impact of Covid-19 has been most severe in residential care.

The potential reasons for this have been much discussed, including an association between for-profit ownership of facilities and the level of Covid-19 infections in residents. However, the pandemic has exposed, not created, problems in social care systems, and in some respects has sidelined longstanding concerns about the quality and standards of care and accountability within the system.

Over the years there has been little change in the services on offer for residential care, and indeed for social care more generally. While better funding is a prerequisite for change, post-Covid, there needs to be a fundamental transformation of adult social care.

The problems of the social care system could be summarised as: a fragmented and poorly governed and regulated provider system, an under appreciation of the value of care work and inappropriate funding and commissioning models. The market in care homes and in domiciliary care (home care provision) is dominated by the private sector. What started more than 40 years ago as an objective about a mixed economy of care with the private, voluntary and state sectors providing services, quickly became dominance by the private sector. The impact of this marketisation of care is fragmentation and precarity in the care provider market and a casualisation of the workforce, all impacting on users.

Given the scale of private provision the prospect of renationalisation of care may not be feasible. But there are increasing calls for a new approach to the commissioning of care, summed up by Hudson (*) as commissioning: small and locally, with evidence from regulators that small scale services equals more effective provision; holistically and personally, not just covering basic tasks but embracing a broader definition of ‘care’ which encompasses dignity, physical and mental

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Professionalisation of care and higher salaries linked to mandatory qualifications and professional development in all provider sectors is a necessary foundation well-being and control over day-to-day life; and, supporting the workforce, by commissioning from ethical employers who meet a set of quality, pay and workforce training and development standards. It is always difficult to directly transfer models of care developed elsewhere. But there are examples of innovation across a range of countries which share common characteristics, including an approach which is about designing environments for a meaningful life – whether residential care or in the community.

With regard to care at home, the much-referenced Buurtzorg neighbourhood care model in the Netherlands describes itself as prioritising humanity over bureaucracy. Self-directed, nurse-led teams provide personal and

clinical care. Teams are small and geographically based and users see a maximum of three or four people.

This is just one example of placebased approaches where teams work around a set of users in a geographical area with better continuity of staff and care which is relationship-based and flexible, rather than focused on packages of care.

The ‘time and task’ model of commissioning in Northern Ireland with 15 or 30 minute visits the norm is inflexible, often allowing little choice – even over getting up or bed times and is focused on a rigid definition of care which is largely limited to physical needs.

Public confidence in care homes was shaken long before the pandemic. In addition to the concerns about sustainability created by large providers exiting the market, users and families often have little choice of services and care settings, have not been adequately protected by consumer law and have had little opportunity to have a real say in their care.

The lack of transparency in the public reporting of the quality of services also means they don’t always have access to information to enable them to make good care home choices. Ethical commissioning could change the business and care models currently operating.

There is a strong consensus about the need for major generational reform of adult social care. Introducing new ways of working requires investment initially, including in workforce development. We do have some way to go on this.

Professionalisation of care and higher salaries linked to mandatory qualifications and professional development in all provider sectors is a necessary foundation.

Hudson, B (2019) Commissioning for Change: A new model for commissioning adult social care, Critical Social Policy, 39,3 *

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Love in the time of lockdown . . .

Together: Stanley O’Neill in December 2019, smiling alongside his son, Simon, granddaughter Sophie, and great-grandson Ollie

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Deterioration: Stanley O’Neill’s physical and mental condition suffered a rapid decline due to illness and lack of face-to-face contact with family members, said his granddaughter Sophie O’Neill

Real family contact is absolutely essential, says granddaughter who fought to see her grandad Belfast woman has told VIEW that it’s extremely urgent that regular visits to all care homes are started as soon as possible.

Twenty-two-year-old Sophie O’Neill, whose grandfather, Stanley O’Neill, is in a nursing home, said she had witnessed a sharp deterioration in his physical and mental health due to a lack of visits and physical interaction from his family.

“Things need to change as soon as possible,” said Sophie. “We need normality as soon as possible. Families and loved ones in care homes need each other. I just want to spend as much time with my grandad as possible.”

Seventy-eight-year-old Stanley, who used to be a district manager for the Housing Executive, has endured some very tough health battles since being diagnosed with dementia. He has been in hospital twice, and has resided at three nursing homes.

Sophie said that her grandad has contracted numerous infections, including MRSA and Covid-19, and a consultant has told the family that Stanley has a life expectancy of about another year.

Determined campaigner Sophie said her grandfather first went into a nursing home for respite at the end of January last year, because he was unmanageable at home and his dementia had progressed. “ We thought that he would just be in the care home in Dunmurry for about three weeks to give my granny a bit of peace. But he ended up spending several months there.

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“He ended up being taken to Lagan Valley hospital. I can remember one of my window visits at the hospital.

He was on the first floor of a tower block.

I was standing on a bit of grass outside.

My grandad was looking down at me; his window couldn’t be fully open due to safety regulations. He was waving, he was crying. He didn’t understand why he couldn’t come out. It was all very distressing.

“He spent several weeks in Lagan Valley mental health. He ended up having a fall and needed a hip replacement. We were not allowed to go in and comfort him before the surgery.

“My grandad has been suffering from dementia for around four years. When he was in his own house, he was a very independent family man. He would have walked from where he lived in Finaghy in south Belfast to the city centre.

“When we seen him at the window in the hospital, his condition was shocking. I could not believe it, I can’t express this enough. I can remember my grandad putting his hands up trying to grab my own son’s hands during a window visit. It was shocking. He used to cry a lot and say: ‘Please come and take me home’.”

He also spent around 200 days at the Mater Hospital after it was discovered he had a MRSA infection. Sophie’s grandad also tested positive for Covid-19.”

After being discharged from the Mater, Stanley was moved to Bradley Manor nursing home in north Belfast.

But further lockdown restrictions in

July last year resulted in visits being scaled back to one hour a week with just one relative allowed in at a time.

“You can imagine how distressing that is for someone with dementia who has complex needs,” said Sophie. “No one is able to get in to provide some type of real stimulation for him.

“We’re so happy to be able to see him though,” added Sophie.

“As a recently recognised care partner, I now get in two hours a weeks.

But I had to fight for it. I do understand though that nursing homes are under huge pressure because of the pandemic “Grandad loved playing cricket. He played it, or loved to watch his sons playing it. About a year-and-a-half ago, before all this started, he was in Wallace Park, playing cricket. He was still fit, still healthy, still wanted to engage.

“And now, he’s basically left in a bed. I believe his dementia has rapidly increased because of all the things that have happened since last year.

“The lack of family visits has had a huge impact on him and other residents.

“The good thing now though, is that because of the care partner scheme, I can sit beside my grandad and hold his hands.

I’m obviously wearing gloves, but it’s a brilliant feeling to be able to touch your loved one.

“I fought for a long time to be able to do this simple thing. My grandad has missed out on so much. We must try and make sure that care homes are much better protected in the future.”

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COMMENT

We need to rethink our care homes John Williams, Emeritus Professor of Law, Aberystwyth University, says that residents in care homes must feel safe, and they must be protected from abuse and neglect uman rights belong to everybody.

The United Nations Universal Declaration of Human Rights makes this clear.

It is recognised in the European Convention on Human Rights, which is incorporated into United Kingdom law by the Human Rights Act 1998. For those who discredit human rights, the Commissioner for Older People NI’s report Home Truths illustrates their importance in protecting people.

Covid-19 revealed many things about society’s attitude towards older people.

Discharging older people into care homes without testing, guidelines for treatment using age as a proxy, the misuse of Do Not Attempt Cardiopulmonary Resuscitation notices, and the ban on care home visitors are examples of ageism underpinning policy. The International Longevity Centre Global Alliance point out that Covid-19 has highlighted ’age discrimination, abuse, and neglect that for far too long have gone unaddressed.’

We can now confront ageism and abuse taking advantage of its raised profile.

One area where this is needed is the human rights of care home residents. Care homes have been a feature of older people’s services since the times of the almshouses. The emergence of the welfare state and the aim of abolishing the old Poor Law ushered in public sector-run homes for those needing care.

Aneurin Bevan said: “The workhouse is to go” and be replaced by “nonstigmatising homes.” The emergence of the market in social care in the 1980s changed the role of the public sector from provider to purchaser of services from the independent sector.

Despite these changes, we have given little thought to what a care home should be. Peter Townsend’s study of care homes in the 1960s concluded, ‘…communal

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The fact that a resident is living with dementia does not take away their personhood and their human rights

homes of the kind which exist today … do not adequately meet the physical, psychological, and social needs of elderly people living in them, and that alternative services and living arrangements should quickly take their place’.

His conclusion has resonance today.

The perception of care homes is driven by the name. ‘Care’ comes before ‘home’ – care qualifies the home dimension. For residents, a care home is their home. It is protected by the human right to respect for home.

Home is not a legal term. Instead, the European Court of Human Rights refers to it as where ‘the person lives and to which

(they) return and which forms the centre of their existence.’ For many people entering a care home, it may be their last home, which makes it so important that it is respected.

Other human rights are critical for care home residents. The right to private life protects autonomy, privacy, respect, and dignity. Any interference in those rights is limited by the European Convention and must be proportionate and undertaken in relation to individuals and not as blanket policies or procedures.

Dignity is central and underpins all human rights. The fact that a resident is living with dementia does not take away their personhood and their human rights.

Design of care homes is often anti-human rights. Safe spaces to enable people to wander, appropriate use of colour, access to fresh air and private space are often ignored in care home design.

Above all residents must feel safe.

They must be protected from abuse and neglect; their right to life must be protected. Deprivations of liberty must be in accordance with the law.

We need to rethink what living in a care home involves. They must be promoters of human rights for their residents. Regulatory regimes must recognise and enforce this. Care homes cannot sit outside of the human rights framework. As Nelson Mandela said: “To deny people of their human rights is to challenge their very humanity.”

• Professor John Williams was a member of an expert panel for the 2018 Home Truths report which reported on abuses at Dunmurry Manor Care Home

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Colm Gildernew, Sinn Fein MLA and chair of the Health Committee at Stormont, talks to VIEW editor Brian Pelan about the impact of Covid-19 on care homes in Northern Ireland Brian Pelan: Did we fail older vulnerable residents in care homes given the high number of deaths?

Colm Gildernew: I think what’s critical is that, given the unprecedented nature of the pandemic, I think the position that the Health Committee has always taken is that it’s crucial that we quickly learn what we can in order to do things better, and that we implement that learning.

The recent Health Committee inquiry report on the ‘Impact of COVID-19 in Care Homes’ made 54 recommendations. Do we need legislation to implement them?

That, I think, will emerge in time. We have laid this report in front of the Assembly. The Assembly has supported this report, and endorsed the report to that degree. And we have asked the Minister (for Health) to respond to the report.

Professor Martin McKee, from the Independent Scientific Advisory Group for Emergencies said, when he appeared before the Stormont Health Committee last May, that moving hospital patients into care homes at the start of the lockdown last March resulted in residents becoming infected. This then enabled Covid-19 to spread. Do you agree with his statement?

The committee did make that hospital discharge policy a specific focus. And the committee recommended that no one be discharged from hospital to a care home without having tested negative for Covid-19. So in that sense, we do, and we did agree, that this was a particular area that we needed to very quickly learn from.

Do you accept that patients were moved into care homes at the start of the lockdown without being tested?

I think that is factually correct that was the case.

Does Professor McKee’s statement confict with the report (commissioned by Health Minister Robin Swann) by consultant cardiologist Niall Herity which reported that patients being discharged from hospitals into care homes during the first wave of the coronavirus pandemic was not a “substantial cause” of virus outbreaks. Have you come across this report?

No, I haven’t.

Health Minister Robin Swann ordered an independent review into the resignation of the RQIA (Regulation and Quality Improvement Authority) board last June. What are your views on it?

This is that is an area that the committee has returned to on several occasions, and is an area of concern. The committee have asked that the terms of reference, will include the resignation of the board, and that their concerns are looked at and that that whole period of time be very extensively reviewed.

Have you read the findings from the review?

I haven’t seen the completed investigation.

Should the details of the review be made available to the public?

Yes, absolutely. I think, in the interest of transparency and in the interest of learning, that these reports should be made available.

What lessons have you learnt from the impact of Covid-19 on care homes, and the difficulties of residents trying to visit their loved ones?

I think our view is that it’s essential that families and care homes are involved from very outset in terms of exploring what the solutions would or could be.

Should wages and conditions be improved for those working in the private care sector?

The committee did recommend that the Department (of Health) set minimum standards for sick pay in care home workers’ contracts. This is a very a particular nut that we as a society, need to crack in terms of how we value health and social care workers.

Do you have a view on the best way ahead for adult social care policy? Should we stay with a private care model or adopt a public care model?

The Health Committee haven’t addressed this. I am acutely aware that we are heavily reliant on the private sector – maybe 90 percent of our care homes are in that sector. To me that doesn’t speak of a provision in terms of publicly-provided options. I think that’s something we need to address. We absolutely need to consider how we do this better in a way that is compassionate and caring and provides the facilities and the services that we are going to need.

Do you think there should be a public inquiry into the high number of deaths in our care homes?

My focus at this point in time is dealing with the ongoing situation.

We’re not out of the woods yet by any means. In terms of the Health Committee, we have determined that our focus will be on providing that scrutiny, that advice. But I do think at some point, there will absolutely need to be a very focused inquiry into all of these elements.

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Fred and Maureen Cowan who are now both in the same care home

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I will tell them I have been trying for so long to get in. I will tell them that we did not abandon them

By Brian Pelan honda McKeown sighed deeply and went quiet for a couple of minutes. I had just asked her about the stress she has suffered from the pandemic as she tried to cope with the extremely difficult situation of having both her parents in a care home.

“To be honest with you, I actually, at one point, sat on a beach close to where we live. I was just thinking, ‘I’m going to get on a ferry to Scotland because I just need to get away from everything’. The anguish, mentally, was just too much. If I hadn’t been a Christian, I think I’d have killed myself, because it’s just so difficult being physically separated from your parents, and not being able to properly see them.”

Her mother, 81-year-old Maureen Cowan, went into Glenabbey Manor care home in 2018.

“I ended up also getting a job there,” said Rhonda. “I worked there until mum went into hospital at the beginning of August 2020.

“When she was in hospital, they said that she still needed nursing care. I didn’t want her to go back to Glenabbey Manor because of concerns I had.

“I felt that there was not proper protection for staff. I, myself, got COVID right at the beginning of the outbreak, along with other residents.

It was reported by a BBC NI health correspondent in May 2020 (https://www.bbc.co.uk/news/uknorthern-ireland-52552176) that 14 residents at the care home had died from the virus.

Some families of residents in Glenabbey Manor believe that figure might be higher.

“My mother went to Abbeylands care home in Whiteabbey after she left hospital.

My dad Fred Cowan (also 81 years of age) was living with my husband and I. He has vascular dementia and we knew that he would go out during lockdown because he wouldn’t understand it or the need for social distancing.

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Poignant: Fred Cowan, at the window of his nursing home, holding a photograph of his wife, Maureen, and him

“We felt safer with him coming to stay with us.

“Dad went into the same care home as mum last August because we didn’t have stairs in our house. An occupational therapist assessed my father and said that with his balance issues he should not be living in a house with stairs “We manage to get him into Abbeylands,” said Rhonda. “The manager of the care home said it meant that he could go and visit his wife.

“He would go to visit her,” said Rhonda. “Even though she has dementia she would recognise his voice. She would smile when she heard him. She definitely still knew him.

“My dad was taken to hospital with a mini stroke at the beginning of last September. We were able to go to the hospital every day to see him. The last time I got to hold his hands was September 21.

It was in hospital just before he went back to the nursing home.

“We have only been able to see my mum through closed window visits.”

What has the impact of all this been

on you, I asked.

Rhonda replied: “It was bad enough whenever dad was with us and mum was in the care home. But when they were both in the care home it was really difficult.

At the start we could only get virtual visits.

Mum didn’t understand virtual visits so they were useless.

“Daddy couldn’t hear for the first three virtual visits because his hearing aids were not working The whole experience was really frustrating.

“You’re just waiting on a phone call to say that they have passed away.

“There has also been a marked deterioration in their health from us not really being able to see them. Dad has got so confused that he has phoned us at all hours. He doesn’t know day from night.

“And when he does phone, he says he is really lonely. And he says, ‘I need out of here because there is nobody to talk to.’

He does understands that the staff are busy because of the virus but he just wants someone to talk to.

“My father was a minister. He would have officiated at weddings. My mum was on the church board and was always heavily involved in its activities.

“Both of them were also involved with the Christian Motorcycle Association. We used to go to motorbike rallies in the USA, Scotland and England.”

I asked Rhonda for her views on how prepared care homes were at the start of the pandemic.

“I think that they should have been closed long before they actually were,” replied Rhonda.

“We could see how bad it was in care homes in Italy and Spain before the virus arrived here. Measures to combat the virus should also have been put in place by the authorities long before they were.”

And when you finally do get to physically see and hold your parents, what will you say to them?

“I will tell them I have been trying for so long to get in. I will tell them that we didn’t abandon them.”

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Ann McConnell with her father John Burns who died from Covid-19 in April last year

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I was wearing full PPE but I still got to hold my daddy’s hands for one last time. I’m so glad I got the opportunity to do that

By Brian Pelan ecause of the pandemic my interview with west Belfast mother Ann McConnell had to be carried out over the phone. Her father, John Burns, was one of the early victims of Covid-19.

He died at Our Lady’s Care Home on the Falls Road at the age of 68 in early April.

John, who was a bricklayer by trade, lived in the Turf Lodge housing estate. He had one brother and four sisters, and had only been in the care home for a month before he passed away.

“Sometimes, I am sad and heartbroken because he’s not here,” said Ann. “Then there are other times when I’ll get angry because, I believe, it could have been prevented.

“They knew what was going to happen. They had got enough notice. They knew it was going to attack the elderly and vulnerable who had underlying health conditions. And they knew that nursing homes were one of the places that was going to be hit the hardest.

“There should have been more PPE for a start. The day I brought my daddy into the care home on Monday, March, 16, last year, that was the day, more or less, where everywhere went into lockdown. But Our Lady’s had already, on their own accord, gone into lockdown on Friday, March 13.

“The day I brought my father in, I didn’t get tested, my daddy didn’t get tested. There were some people walking around with no PPE. “The staff weren’t even getting tested and they said that it was hard to get tests.

What are your memories of your father, I asked.

“He was a very private man,” replied Ann. “He was funny and kind, and very intelligent. He lived on his own. He idolised his grandchildren.

“He had been diagnosed with vascular dementia and Azheimer’s.

“He knew he knew who I was. And

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Pandemic victim: John Burns that’s one thing that I am grateful for.

“I was his only daughter and his main carer. I went to see him every day when he was in the care home.

“My daddy got knocked down about four years ago on the Falls Road in west Belfast. He got hit by a bus and nearly died from his injuries. The dementia may have been brought on by head trauma that he suffered.

“We started noticing small things like he was repeating himself, and he kept going to the post office to collect his money, even though he had already done it, a few hours earlier. He was going out at nighttime a lot, and then he was having the odd wee fall. I got him tested privately and was told that my daddy was suffering from the early onset of dementia.

“I only have a two-bedroom house and I have two children so there was nowhere for him to sleep in my home. I tried to get approval for a room to be added onto my house, so my father could move in it, but it was unsuccessful.

“Even though I knew it would be difficult, I really wanted my daddy to come

and live with us. I just felt like it was something that I wanted to do.You only have one daddy.

Ann recounted how she was able to spend the last two nights with her father during the last two days of his life.

“He loved Johnny Cash and Suzi Quatro. I didn’t even know who she was. I had to Google it. And he also loved The Beatles. I was also to get his brother to talk to him, via a video phone call.

“The funeral was very difficult. I wasn’t allowed his body to be brought to my house. His remains went straight to the funeral parlour. I wasn’t even allowed in to see him, and his casket was kept closed. He was buried in the clothes he died in. I had asked could he be dressed in specific clothes, but it wasn’t allowed. There was a small group of mourners allowed on the day of the funeral. We met outside the funeral parlour and then walked behind the hearse to the cemetery.

“I am grateful that I was with my dad for the final hours of his life as many other families didn’t get that. It all happened so quickly. On the Thursday before Good Friday, the care home phoned me to say that my father was really sick and was coughing a lot. He was tested for Covid and the results came back positive.

“I was wearing full PPE but I still got to hold my father’s hands for one last time.

I’m so glad that I got the opportunity to do that.”

Ann hit out at the ongoing difficulty of families getting visits to care homes. “In my opinion it’s a form of abuse. It’s hell for the families. I don’t understand why a family member can’t go in if they are wearing full PPE. Along with other relatives in this issue of VIEW, Ann also strongly believes that there should be an inquiry into deaths at care homes.

Ann’s final words to me spoke of her love for her father. “My daddy is now resting in his parents’ grave in Milltown Cemetery. I visit it every Sunday.”

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Hands of love: Deirdre O’Neill holding her fathers’s hand

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It feels like we can’t give him the same care and love that he gave us when we were little

By Laura Barr EIRDRE O’Neill isn’t sure if her three children will ever get to hug or even see their grandad again.

He has been a resident in three separate care homes since the pandemic took hold. She has described the last year as the “most traumatising experience” her family and her father, John Duffy, have ever had to endure.

Deirdre’s story began at the start of the lockdown restrictions which were implemented at the end of March last year.

Her father, from west Belfast, had been a resident in Brooklands Nursing Home, Dunmurry, since March 2019.

Deirdre recalls how frustrated she and her mother, Louise, and sister, Donna, felt when they were informed that they would no longer have access to the home to see John.

The 71-year-old had enjoyed having his family visit him on a regular basis.

Before the initial lockdown they were able to take him out in his wheelchair and he was very much a part of their lives every day.

However, on March 12, Deirdre said that: “Management literally shut the door and said no one was permitted entry anymore. It was heart-breaking that we never had the opportunity to explain to him that we might not see him for a while.”

John suffers from dementia as well as COPD and Parkinson’s disease and Deirdre explained that it would have been so important for his family to have that conversation with him to try and make him understand.

Unfortunately, John became sick and was transferred to the covid ward at the Ulster Hospital where Deirdre said he was not tested for the virus.

He was sent back to the home after 16 hours. Their first contact with him was on April 21 during a call on Facetime and the family were appalled at how much John had deteriorated.

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Above Deirdre O’Neill with her dad John in happier times, and, below, seeing her dad through a window visit at a nursing home

He was then taken to Lagan Valley where a positive Covid-19 result was confirmed. After 10 weeks he was transferred to a care home on Shaw’s Road but due to complications the family decided to move him again to ensure his well-being and he was given a place in Hillsborough.

The stress of the whole year has taken its toll on Deirdre’s mother and her two sons, aged 15 and 12, and her daughter who is six.

“It’s like my kids have lost their

grandad, even though he’s not gone.

“They have only seen him on three occasions, two of which were in a car park and then through a closed window in November. This is something that will live with my children for the rest of their lives and their grandad has been completely ripped out of their lives.

“What example is this showing our children? That we can just lock people up in care homes, and take their rights away from them? What are we showing our future generations from this? “ Before John became unwell, he could be transferred into a wheelchair but is now bed-bound.

Since January the family have taken some comfort with Donna, who has received her two vaccinations, being granted permission from the care home to become a care partner to John.

She gets three visits per week and can help care for her father.

Deirdre and her mum continue to have behind-the-screen visits, but Deirdre is hopeful that this will change soon.

Speaking about how the government has handled the situation, Deirdre said she doesn’t feel that what they are doing now is in the name of protection anymore.

“My daddy hasn’t been protected one single bit because he got Covid and nearly died from it. The only thing they’ve done is take away the most important thing in his life – his family. He doesn’t have a life anymore, just a very sad existence.

“The thought of him sitting in his room staring at four walls in a bed, 24/7, is just horrific.”

“My daddy worked in the Merchant Navy before he took up a job in the Europa Hotel in Belfast. When we were growing up, mummy was always away out to work early, and it was our daddy getting us our breakfast, and being there when we got home from school.”

Deirdre added: “It feels like we can’t give him the same care and love that he gave us when we were little, and he really needed that level of attention throughout the last year.”

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We are her eyes and her voice.

We need to be seeing her for longer than one hour per week

Kathleen Hill on her 50th wedding anniversary in 2016 with her late husband Martin Hill

By Laura Barr elfast woman Cathy Austin is racked with guilt that she has not been able to care for the woman who reared her and her three siblings.

Her mother, Kathleen Hill, has been confined to a care home for the last year.

The 80-year-old, who has Alzheimer’s, went into the care home on August 5, 2019, on the same day that her husband, Martin Hill, passed away.

It was Martin’s dying wish that his wife would be placed into a safe and caring environment with their children able to visit every day.

Cathy’s parents were inseparable and were together for 56 years. They have 13 grandchildren. She can recall the last words her father, Kathleen’s main carer, said on the day he died.

“Our dad spent the last 11 weeks of his life in hospital after a tumour in his bowel had spread to his liver.

“He wanted to make sure his wife would be looked after and given the 24hour support and care that was required to keep her safe. I can remember us all being there on August 5 with mum’s bags packed for the home and daddy asking where she was going.

“I told him she was going to the care home now, and he said. ‘That’s good. I’m good to go now’.”

Cathy’s father passed away a few hours later.

The family were allowed to spend each day with their mother in the home caring for her and putting her to bed each night. On the week prior to St Patrick’s Day in 2020, Cathy received a phone call from her sister who was in the home visiting their mother..

Cathy was told to come urgently as the home were closing its doors to all

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Kathleen Hill in her care home in February, this year visitors within an hour because of the pandemic. Cathy described the next few months as heart-breaking.

“The next weekend, I received a call saying that mummy was very distressed. I could hear her in the background crying and asking, ‘Do you know where I am?

Please come and get me’.”

Episodes like this continued until May when the family were allowed to see her briefly. “She had lost a stone in weight. We couldn’t believe the deterioration in such a short space of time,” said Cathy.

In August, Kathleen was treated in hospital for an injury to her head from a fall. A week later she contracted Covid.

The family had been allowed outdoor visits across a table at the end of August and into September for 30 minutes, once a week, but these had to stop.

“All you want to do, when someone you love is sick, is be there for them and care for them. We were denied that right.”

Kathleen’s children didn’t see their mother again until a short window visit on Christmas Day.

Cathy who has been involved with the Department of Health’s Family Engagement and Patient Client Council, was able to assist with the Care Partner Scheme which was put in place on September 23, 2020.

She is not convinced that care homes are doing enough to implement the scheme.

“For someone like my mummy, who has advanced Alzheimer’s, communicating through an iPad with their family or seeing them in a pod for visits does not work.

“It’s too distressing for her to hear our voices and not to see us.”

Since January, Cathy has been allowed to visit her mother for an hour each week after she became a care partner.

As of mid-March, her sister is also becoming a care partner too, but this means that Cathy’s visits will become fortnightly like her sister’s.

Cathy said she cannot understand why she, and her sister, cannot visit their mother every week on separate occasions.

“It’s not good enough,” she added.

“We are her eyes; we are her voice, and we know her best. We need to be seeing her for longer than one hour per week. I am not saying that we need an open-door policy again, but I believe that there should be at least two people in, every day for an hour as care partners.

“They’re dying of emotional isolation and loneliness. We need to start building our relationships again.”

“My mummy is the first person I think about in the morning and the last person I think about at night. It’s as if she has spent the last year living her purgatory on earth and all I want for her is to be at peace.

“We don’t have much time left with her and time really is of the essence.

“The last days of her life are precious and we’ve been denied 12 whole months of those days.”

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May the government which left our care homes exposed to the virus one day be held to account for its failure to take the virus seriously when there was still time to prepare properly for it Irish academic, journalist and author John Naughton, left, kept a personal online diary of the first 100 days of the lockdown. In an entry on Saturday, May 9, 2020, he wrote about the Covid-19 death of his mother-in-law Elsie who was living in a care home ’ve just been reading a thoughtful essay in The Atlantic by the American poet Thomas Lynch, who also happens to be an undertaker and the author of a beautiful book of essays on his trade that was a best seller in 1998. “The current emergency,” he writes now, “disallows all but the most needful duty to burn or bury the dead on a schedule advanced by a witless virus.The coronavirus overwhelms not only our medical, financial, social, and religious infrastructures, but our mortuary ones as well. For many mourners, the postponed and bodiless obsequies will make the lonely deaths only more unmooring—like trying to understand love when the bride is absent from her nuptials; or initiation and new life, naming and claiming, when the baby is missing from the baptism.”

That rings a bell, I can tell you. Just over two weeks ago my elderly mother-inlaw, Elsie, was taken by the Coronavirus.

She had dementia, but for the last few years had been living in a very nice care home where she seemed to be happy. She was always a cheerful, sociable soul and those blessed characteristics survived the erosion of her memory.

She was always happy to see you, even if she hadn’t the faintest idea who you were. Three years ago we all — her son, son-in-law, daughters-in-law, grandchildren and great-grandchildren – came to celebrate her 90th birthday, and I have some lovely pictures of her sitting baffled but delighted in the bosom of this large affectionate family.

One of the great consolations for us was that she really seemed to like the care home. It had been a real struggle to enable her to live in her own house, with carers coming and going. But in the care home she was relaxed and apparently happy. And then, a month or so ago, Covid-19 arrived.

One resident contracted it and was moved

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100 Not Out: A lockdown diary...

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to hospital (where, mercifully, he later recovered). But after that the care home went into lockdown mode. Residents were required to stay in their rooms. Elsie couldn’t understand why this was imposed on her and became distressed. She also started to show symptoms of the infection and so was removed to hospital where, several days later, she died.

For us, this was what the New York Times health correspondent, Don McNeil, describes as our “Spanish Flu moment”.

The thing about the 1918 pandemic, he had said in an earlier podcast, was that while not everybody died, everyone knew someone who had. And now we fitted that template.

Neither my brother-in-law (her son) nor I were able to travel to be with her, for we were both in lockdown. And even if we had been able to get to the hospital three hours away, we would not have been admitted. So poor Elsie died confused and alone, with nobody from the family to hold

her hand as she slipped away.

This is one of the cruellest things about this pandemic. It is terrible for families of patients; but it is also emotionally traumatic for front line medical staff. Having to hold a mobile phone up to patients so that they can say goodbye to their loved ones really eats into your soul. No wonder so many NHS staff wind up traumatised, despite their professionalism. Or perhaps because of it.

The aftermath is also traumatic for families, but in a different way. Normal funerals are currently out of the question.

An undertaker collects the body of the deceased and essentially books a slot with a crematorium or a graveyard. So it was with Elsie. Her slot was last Thursday morning, at 8am. There would be a very brief ceremony organised by the funeral director, but — we were told — there would be a live video feed for family members. So, from our homes across the UK and Ireland, we all logged on at the appointed hour — only to have the video feed suddenly drop out. And when it returned, the service — such as it was — was over.

The funeral director was as baffled and as frustrated as we were. It had gone as planned, he said. Some Beethoven on the way in and a popular song on the way out. But we saw or heard none of that.

And so we’re left with a curious feeling of empty incompleteness. We were denied that awful psychobabble word — ’closure’. We were — as Thomas Lynch puts it — unmoored.

May that lovely woman, my children’s beloved grandmother, rest in peace. And may the government which left our care homes exposed to the virus one day be held to account for its failure to take the virus seriously when there was still time to prepare properly for it.

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Care home workers ‘felt forgotten’

Shocking testimony: Labour MP Olivia Blake heard evidence from witnesses

VIEW editor Brian Pelan talks to Labour MP Olivia Blake. She sits on the House of Commons public accounts committee which issued a scathing report into handling of the pandemic are homes were left exposed by a lack of personal protective equipment early in the pandemic, MPs on the House of Commons public accounts committee (PAC) found in a damning report published in February this year.

Olivia Blake, Labour MP for Sheffield, Hallam, and who sits on the PAC, said, in a wide-ranging interview, that she was “shocked” by what she heard from the first set of witnesses when they were talking about the lack of PPE. “ We heard from people who were having to reuse items multiple times. We heard from one nurse who gave us quite shocking evidence about being four hours away from from running out of PPE, and being told in an emergency phone call that they couldn’t help,” said Ms Blake.

“We heard from Care UK about the real issues they were having in care homes, and feeling like they were an afterthought.

“I think there was an assumption made by the Department of Health and Social Care that care homes, in particular, and care providers would be able to get resources from their usual channels.”

What sort of effect did the lack of PPE have on frontline workers, especially in the care homes sector?

Ms Blake said: “I think it’s quite clear that people were taking very big risks to make sure they were providing the treatment and care that people needed.

“Unfortunately, we’ve seen a huge amount of outbreaks in care homes. In England, we saw patients from Covid positive wards not being tested when they were placed in care homes.

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Was the situation in care homes only taken more seriously when the mortality rate started to soar?

“Yes,” replied Ms Blake. “I think it’s fair to say that they were quite complacent over the stockpiles until they learned more about it.

“I also think that there were many lessons learnt, but not quickly enough.”

A lot of care workers in the private sector are on low rates of pay. Did the PAC consider any evidence that the care workers felt forced into situations at the start of the pandemic?

Ms Blake said:“I think it is very clear from the evidence we had that over 50 percent of care workers had been asked to reuse a piece of single use equipment.

Whether that’s a mask or gloves, you could see how concerning that would be. I think in the care sector there was a feeling that they had been kind of forgotten. In our findings, we said that assistance to social care providers was neglected.”

Is the private care sector treated on the same level playing field as the NHS? Ms Blake said: “I would say that it was quite clear, and quite stark, that social care was treated differently.”

Do you think that adult social care provision should be brought back under public health control?

“I think that there are some big questions to be asked about that,” replied Ms Blake.

“Speaking as a Labour Party politician, and not as a member of PAC, I think there are big questions that have come out of all this, and the fractured nature of the care sector. We have a huge problem in care, in

England in particular. and in the future funding of care. I think there are lots and lots of lessons to be learnt about the privatisation of the sector. I don’t agree that it should be privatised. I would much more prefer to see a much more integrated model with the public sector.”

What would the Labour Party have done differently?

Ms Blake said: “One of the key gaps we identified was the link with with frontline workers, and I think that any Labour government would be much more aware and in contact with frontline workers through our union links. I also think probably local authorities would have been much more involved.”

A Department of Health and Social Care spokesperson said: “We have been working tirelessly to procure, produce and deliver PPE to over 58,000 settings, protecting our health and social care staff on the frontline of this pandemic.

“As the public accounts committee recognises, the government faced significant challenges in having to rapidly procure PPE at pace in a competitive international market. Thanks to the combined effort of government, NHS, armed forces, civil servants and industry we have delivered over 8.1 billion items of PPE at record speed.”

• Read the full report: COVID-19: Government procurement and supply of Personal Protective Equipment – https://bit.ly/3v684CX

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Spotlight shone on for-profit sector in US as Covid-19 claims the lives of over 170,000 care home residents and staff Journalist Mary O’Hara reports on the huge pandemic toll in the United States welve months on from the first nursing home outbreak of Covid-19 identified in the United States marking the onset of a huge and devastating wave of infections and deaths in residential care settings, finally the tide may be turning.

The US has experienced one of the worst Covid-19 outbreaks in the world with more than half a million people losing their lives so far to the pandemic. Over a third of fatalities have been in long-term care settings for older people so it’s understandable that relief is palpable as the rollout of vaccines – prioritised for older people in care facilities – appears, after a sluggish start, to be making a dent in the trajectory.

Federal figures suggest that in nursing homes – which account for a large proportion of long-term care facilities and on average cater to around 1.4 million residents annually – new cases and deaths have fallen sharply since vaccines began being administered. From December to early February, cases of infection fell by more than 80 percent among nursing home residents – nearly twice the rate of improvement for the wider population.

And, while the winter Covid-19 surge saw a spike in deaths in nursing homes, of which there are around 15,600 across the country according to the Centers for Disease Control, (CDC) deaths decreased by more than 65 percent.

Over 170,000 residents and staff at nursing homes and other long-term care facilities for older people have died since the start of the pandemic, according to a database compiled by the New York Times.

Thirty five percent of the country’s colossal half a million plus deaths to date were attributed to these settings by the end of February 2021, The Covid Tracking Project has reported. The large number of deaths occurred despite just one percent of the US population living in long-term care facilities, including nursing homes.

In some states, as many as half of all pandemic deaths were people living or working in such facilities, the New York Times’s analysis indicates.

A major issue during the pandemic has been the disproportionate impact of

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Covid-19 on people of colour, including those in nursing homes. One recent study by the University of Chicago found that nursing homes with more than 40 percent minority residents had three times more deaths than those with more white people.

The staggering overall nursing home death tolls come against a backdrop of multiple controversies. For one thing, as with the UK, PPE shortages have presented enormous challenges, putting residents and staff at risk. As recently as January 2021, one in seven nursing homes were still reporting shortages of PPE, according to the AARP (formerly the American Association of Retired Persons).

Meanwhile in New York state, which was an epicentre for the pandemic in the early months, (at the time of writing there have been more than1.6 million cases and over 47,000 deaths) has seen its governor, Andrew Cuomo embroiled in scandals and accused of covering up thousands of nursing home deaths.

Cuomo’s escalating political troubles have also highlighted another aspect of the nursing home sector – the collective lobbying clout of privately-owned operators. Nationwide, almost two thirds of nursing homes have for-profit

ownership, according to the CDC. As the pandemic ravaged New York, including facilities housing older residents, a clause inserted into the New York state budget in the middle of 2020 effectively shielded forprofit nursing home operators from many lawsuits linked to failures to protect residents from death or sickness as a result of contracting the coronavirus.

It’s not the only state where the sector has been shielded to some degree, but New York’s status as the state worst hit early on in the pandemic – alongside Cuomo’s basking in acclaim of how he initially handled the spread – has made the spotlight glare all the greater.

The pandemic has thrust a number of systemic issues, including inequality and racial inequity, to the fore. However in the US, perhaps as never before, it has triggered a focus on safeguarding practices in nursing homes and it raises serious questions about standards of care in the for-profit sector, whether there is a pandemic or not.

• Mary O’Hara, The Shame Game: Overturning the toxic poverty narrative shamegamethebook.com

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Care home residents are being thrown to the wolves Breathtaking – Inside the NHS in a time of pandemic

by Rachel Clarke Reviewed by Brian Pelan he words in a well-written book are much more powerful than the daily utterances on social media.

They will endure.

Author Rachel Clarke proves this. In her new book, Breathtaking, she attempts to capture a sense of what it was like on the NHS frontline in a time of pandemic.

The opening line in the prologue: ‘He lies on hospital sheets,but he’s drowning’ transports you to a sense of safety, combined with fear and illness.

Breathtaking is based on Rachel’s own experiences as a doctor caring for patients with Covid-19, as well as interviews with colleagues, patients and their families. It reveals what life was like inside the NHS during the first wave of the pandemic in the UK. As this issue of VIEW is about how Covid-19 affected care home residents, I was interested to read the author’s views on the horror that unfolded among the most vulnerable group in society.

Rachel does not pull her punches.

In the chapter, ‘Human Factors’ she writes: “Suddenly, the press is full of shocking headlines such as ‘Elderly Abandoned to Worst the Virus Can Do, ‘Sacrificing the Elderly, and a ‘Callous Betrayal of Our Most Vulnerable’.They refer to the spectacle of first hundreds, then thousands of care home residents dying as Covid tears through their homes despite the best efforts of staff.

“The details are painful to read possible Hospital Covid tests are taking five days or more to be processed by a tiny number of

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Rachel Clarke, author of Your Life In My Hands: A Junior Doctor’s Story and Dear Life: A Doctor’s Story of Life and Loss centralised labs. Hospitals are therefore being driven to discharge patients back into care homes without knowing for sure that the patients are free from Covid.The government has already insisted that this does not matter.

There was no need to test care home residents prior to discharge from the hospital, they told us, because even those who were infected could ‘be safely cared for in a care home’. But this could not have been more wrong.”

Even Rachel herself admits: “I feel as though I am somehow complicit in a full-scale betrayal of the country’s most vulnerable citizens. Care home residents are being thrown to the wolves.”

She need not worry. Those decisions about moving patients were made by much more senior health officials.

Breathtaking, although harrowing in the personal testimonies scattered throughout, ends on a note of optimism despite the

carnage we’ve lived through as the pandemic swept through the UK and far beyond, with working class communities and ethnic minorities suffering the worst death toll.

Rachel writes near the end of the book: “Whatever else we may learn from this pandemic, here is what I know now.That in the preceding month I have seen purer and more concentrated human decency than I ever dared to believe was possible.That this worst of times has brought forth our best. And that people, fundamentally, are good.”

I doubt though that ministers in the Conservative government, including Boris Johnson, will have Rachel’s book on their bedside table. The clapping that they encouraged for NHS frontline heroes resulted in a one percent pay offer. A truly breathtaking insult.

As Rachel herself wrote, in a recent article for The Guardian newspaper: “Here, then, is the stark truth behind the derisory one percent pay offer. If the prime minister can afford to spend two-thirds of the entire NHS annual budget on a very fast train, he can also afford to reward NHS staff with a real-terms pay rise.The fact that he has chosen, quite deliberately, not to do so speaks volumes.

“All the praise was empty, the sycophancy merely that.This government has made no meaningful commitment to the NHS or NHS staff at all.The sorry truth, as every NHS nurse who’s ever used a food bank knows, is that money can’t buy you love – and love can’t buy you anything at all.”

Read Breathtaking – support NHS workers in their pay struggle.

• ‘Breathtaking: Inside the NHS in a Time of Pandemic’ by Rachel Clarke is published by Little, Brown, £16.99

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A timely book being released in the midst of the biggest crisis in care home history Labours of Love: The Crisis of Care by Madeleine Bunting Reviewed by Mary McManus abours of Love is not just about social care, it is about care through the lifecycle from childhood through adulthood to end of life.

Madeleine Bunting eloquently takes us on a journey through the philosophy and history of care as well as detailing how past and current social policy has shaped its current delivery.

Peppered throughout is personal testimony from the author, carers and those providing professional care in charities, hospitals, homes and care homes.

The combination of all these elements makes for an affecting, thought’provoking, educational and, above all, a very readable book about care.

The author has stated that she wanted to make care, so much of which is invisible, visible. The testimony of those providing care in homes and care homes is both inspiring and tragic. The people presented demonstrate what is best in us as humans. They are empathetic and care deeply for the people they look after.

Importantly, they derive meaning from the work they do. As one young woman working in social care put it, she knows her job makes a difference in people’s lives.

However, due to how social care has been industrialised and marketised, carers are overworked and underpaid which results in many leaving to take up marginally better paid but less demanding jobs outside of the care sector. My parents both received social care and my mother spent time in a care home. From the carer I witnessed kissing my mother goodnight

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Madeleine Bunting, above, was for many years a columnist for The Guardian, which she joined in 1990. She is the author of many non-fiction books, including The Plot: A Biography of My Father’s English Acre, which won the Portico Prize, and Love of Country: A Hebridean Journey, which was shortlisted for the Wainwright Golden Beer Book Prize and the Saltire Non-Fiction Book of the Year. She has also written a novel, Island Song and whispering ‘God Bless’ to the young carer in the care home with her arm tenderly around a man with advanced dementia as she talked to him, the heartfelt effort in their work was abundantly evident.

Being able to express such humanity in the course of their work is a gift to both the carer and the person they care for.

These carers need to be retained within the sector by offering them a fair wage and good conditions of employment.

As well as detailing the current crisis

of care, the book briefly touches on the future and how automation will result in the loss of jobs in many fields. However, even mainstream economists are predicting that the provision of care, which requires emotional as well cognitive intelligence, will be a growth area. In Denmark it is possible to study a degree in Social Pedagogy, defined as the, “nurturing of human development at every stage of the life course.” Social pedagogues go on to work in a variety of care settings. The course has a heavy emphasis on developing creative skills which graduates use in the course of their work; care and creativity being closely linked.

The author makes the excellent point that investing in good social care is a way to ensure wealth is equally distributed throughout the country as every place has a care home and people providing social care. I would go further and argue that to ensure this equal distribution we need to look at democratic ownership models such as co-operatives.

Last year the Great Care Co-op opened in Dublin, the first carer-owned co-operative home care organisation in Ireland. In New York the Co-operative Home Care associates is the largest worker-owned co-operative in the US. This is a timely book being released in the midst of the biggest crisis in care home history. We are all now aware of the extent of the crisis in care. We need to ensure that we create a better system for those giving and receiving care, after all our lives and that of our family and neighbours depend on it.

• Labours of Love is published by Granta, priced £20 – https://granta.com/products/labo urs-of-love/

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