UK COVID-19 inquiry|29 Jul 2025

Harrowing evidence from Helen Wildbore. Care Rights UK, John’s Campaign and the Patients Association.

Warning: Contains distressing details. If you make it the whole way you may need a stiff drink afterwards! My longest inquiry substack to date which took 12 hours to complete.

Introduction

Helen Wildbore is Director of Care Rights UK. Helen has 20 years’ experience of working in third sector and academic organisations on human rights and equality. Care Rights UK want people to know their rights and how to use them and offer information, advice and support to empower people using care services and their relatives and friends.

"Right now older people in care are facing the most serious sustained attack on their human rights we've ever seen.’’

‘‘In the name of keeping people safe from the virus, other rights are being violated and untold harm is being caused to lives and wellbeing.’’

-Paragraph 98 of statement-Helen Wildbore on behalf of Care Rights UK

Once again the evidence is compelling what was really harming and killing people en mass in care homes from March 2020. The inhumane and soul destroying lockdown restrictions with adverse impacts reported as more serious than what people experienced during a world war!

‘‘For some people living in care homes, lockdown and restrictions on visiting had fatal consequences.’’

Further harrowing feedback is evidenced;

The testimony of one of our advice line clients about the rollercoaster of emotions of visits to her mum in care being stopped, then permitted as end of life visits..

..but when her mum recuperated with the support of her family visits being stopped again:

‘‘I am convinced that mum decided to die. She stopped eating. She'd had enough and there wasn't enough hope that things would change. If someone had told her she could have visitors again and hold her great grandson i think she would have battled on, but there was little hope offered and her quality of life was too reduced. Whilst she had physical problems, the mental strain was too much for her in the end. I think it was a shock to the staff that mum died when she did, being one of the healthiest and most able people in the home just a month earlier."

-Paragrph 45.1 of statement

The testimony of Himani, whose mother Octavia deteriorated rapidly during lockdown in her care home:

"When the receptionist let me use his phone for a video call, it was only a few days into lockdown but already mum was unable to speak. Her glow and warmth had all but disappeared. She went from being chatty and writing in her diary daily to being unable to talk and write, within days. Her deterioration was so rapid and all consuming."

-Paragraph 45.2

‘‘The testimony of Helen, who had to wait 382 days to hold her mum's hand during the pandemic. Helen describes how not being able to visit resulted in a sharp decline in her mother's dementia and a loss of cognitive function.’’

-Paagraph 45.3

Testimony highlights

• Devastation in care settings during lockdown.

• ‘Protect the NHS’ messaging put lives at risk.

• No person centred care.

• Protection was required from the harmful restrictions not ‘COVID.’

‘‘The messaging around ‘‘protect the NHS’’ led to policies that were detrimental to people needing care..it put people’s lives at risk.’’

‘‘Person centred care is about treating people as people not objects to be moved around..not as statistics..and i am afraid that is the approach that we saw.’’

‘‘The public health response failed to see people as holistic people…there was far too much focus on protection from the virus without balancing that against THE PROTECTION THAT WAS NEEDED FROM THE VERY MEASURES THAT WERE BEING PUT IN PLACE.’’

Isolation policy

• Balancing risks. Harms from isolation being evidenced by families dismissed by officials and calls to change harmful guidance called ‘light touch approach.’

‘‘The response we got back said that the clinical advice wouldn’t support that ‘‘light touch approach’’ even though it was based on legal duties.’’

‘‘Are you actually collecting evidenceof the harm being caused by isolation?…Are you balancing that against the harms of the restrictions being put in place?

‘‘There was story after story what we were hearing.’’ (on isolation harms)..they were’nt heard.’’

Lockdown policy

• Lack of healthcare. No safeguarding. No routine inspections.

• How were judgements being made on overall harms?

• Care home residents and families fearful of raising concerns.

‘‘There wasn’t enough focus on the harms that were being caused by the restrictions put in place.’’

‘‘There are certain bottom lines that should never have been crossed.’’

‘Health practitioners backing away, safeguarding teams backing away…the pause on routine inspections..all of that left people at risk.’’

‘‘The longer that went on the more than other risk of the isolation of people in those care settings became FAR TOO GREAT.’’

‘‘Often we hear people being evicted for raising too many concerns about their care.’’

Rosemary and Anne’s story

• Death due to lack of family visits.

• Husband denied access even with willingness to submit to IPC measures.

• Another resident told would be evicted due to relative concerns over essential visitor status being denied. She soon after passed away before the eviction.

‘‘Rosemary refused to eat and drink…and she starved herself to death.’’

‘‘We saw so many people who were refused an essential caregiver even when it was in the guidance.’’

‘‘When she came back to them and said this is what is in the guidance…her mum was evicted…she passed away before thet eviction could take place.’’

Mandatory isolation periods

• Chilling impacts in ability to access healthcare.

• Residents terrified more of isolation than chronic pain and even cancer.

• Blanket policies in place against human rights.

‘‘There’s another example of a woman in care setting BEGGING her daughter not to remind care staff about appointments for cancer because they were so anxious about isolation that would result from that.’’

‘‘There should NEVER have been blanket rules…they are not human rights compliant.’’

‘‘We heard of so much HARM that was being caused by those isolation measures…those isolation periods caused UNTOLD SUFFERING to people.’’

‘‘People told us i am barely existing…people were self harming.’’

‘‘People were STRAPPED IN THEIR CHAIR FOR 14 DAYS.’’

End of life

• Dying without loved ones.

• Devastating impacts.

• Inhumane and cruel.

‘‘Eve when guidance did allow visiting some care providers enforced STRICTER restrictions than required.’

‘‘This is one of our INHUMANE aspects of the response to the pandemic.’’

‘‘When the person rallies because they’re loved ones are there those visits being withdrawn again.’’

‘‘Her husband John supported her to eat and drink..he was allowed end of life visits but they were withdrawn when Leslie started to eat and drink again.’’

DNACPR decisions

• No consent.

• Coerced to comply.

• Relatives powerless.

• Widespread and ‘hugely concerning.’

‘‘The hospital put her on a palliatve care pathway within 2 days of her hospitilisation against our wishes.’’

‘‘If this decision has been made about my relative without my relative knowin..without me knowing..what else is going on that we don’t know about’’?

‘‘It devalued the lives of older people, disabled people and made them feel that they were DISPENSABLE.’’

Final comments-Human rights

• Laws in place since world war 2 disregarded.

Statement highlights

Some of the most shocking evidence i’ve read in 2 years!

‘‘In a blog posted on John's Campaign's website, John Shaw explained how it felt when he was 'banned' from caring for his wife and how this impacted on John and his wife's wellbeing.’’

-Paragraph 30

‘‘There were widespread reports of DNAR decisions being issued without consent being obtained.’’

-Paragraph 91.1

‘‘All too often we heard of people losing the will to live or giving up on life. Too many people died alone in what must have been terrifying circumstances.’’

-Paragraph 93

‘‘Dementia is a particularly obvious example where people living with an untreatable, progressive, terminal illness were denied the one thing that is known to help: person- centred care, and were at the same time subjected to measures that were likely to worsen their condition — separation, isolation, disruption of routine, and reduced quality of care (including: nutrition, hydration, mobilisation, attention to basic medical needs and co-morbidities). This resulted in greatly increased risk of delirium.’’

‘‘The Alzheimer's Society report entitled 'Lockdown isolation causes shocking levels of decline for people with dementia, who are rapidly losing memory, speech, and ability to dress and feed themselves', is known to irreversibly worsen an individual's condition and precipitate decline. The profound and foreseeable impact of Covid-19 restrictions on those suffering from these conditions and their families was not properly considered.’’

-Paragraph 95

‘‘In March 2020, as the number of cases of Covid-19 grew, many care homes closed their doors — they closed their doors not only to 'visitors' but also to medical professionals, regulators, and carers, and they effectively locked in the people living within the care home.’’

-Paragraph 101

‘‘Blanket restrictions applied to such visits meaning that people continued to be effectively confined in their care homes until Spring 2021. We heard from care home managers who found it distressing to have to effectively detain people within their care homes…

…People living in care homes were describing themselves as being in prison.’’

-Paragraph 109

‘‘For some people we supported this meant that they did not leave their care homes or even their rooms for months on end, which severely impacted upon their mental and their physical health.’’

-Paragraph 111

‘‘For example, an individual who had been hospitalised on a ward with no cases of Covid-19, who had been repeatedly tested and fully vaccinated was still required to isolate for 14 days upon arrival in a care home..

…even if he or she was completely disoriented and at substantial risk due to isolation.’’

-Paragraph 118

‘‘Our adviceline heard the devastating impact on individuals of these restrictions into, out of and within care settings. They were having a significant detrimental impact on people's health, wellbeing and emotional resilience, and for some people..

…were causing immense suffering (amounting to inhuman and degrading treatment), putting their lives at risk as they felt forgotten and abandoned.’’

-Paragraph 119

‘‘This also had an impact on our (very experienced) adviceline workers, hearing the distress and despair daily, knowing that..

..there were legal rights designed to protect people from this kind of harm, which should have taken precedence over non-statutory guidance but didn't.’’

-Paragraph 119

‘‘Shaikh's wife, Rosemary was living in a care home after suffering a stroke and also had dementia. He was told in early April 2020 that he could no longer visit her despite buying his own PPE because of restrictions aimed at cutting the risk of Covid-19 infections. Rosemary refused to eat and drink and Shaikh, who had previously spent six hours a day supporting Rosemary to eat and caring for her, was not allowed to enter the care home and carry out his usual care…

..Sadly, Rosemary died shortly afterwards on 23 April 2020.’’

-Paragraph 122

‘‘One adviceline client told us her mother's care home were requiring her to clean her car inside and out before she was permitted to take her mother out. Another home required a daughter to have the soles of her feet sprayed with a disinfectant before she could enter, but staff did not have to do this.’’

-Paragraph 136

‘‘Helen Wildbore, from the Relatives and Residents Association, told us:

Restrictions have had a hugely detrimental impact, not just on residents' mental well-being but physically. We know that people have stopped eating and drinking. They have lost weight, mobility and speech. These restrictions are isolating for family members and friends on the outside too, locked out of the usual roles that they play as a loved one, as a carer and as an advocate. They are feeling guilt and pain, anxiety and frustration, but they feel powerless. People tell us that they are grieving for someone who is still alive.’’

-Paragraph 144

‘‘We heard that when a woman moved into a care home, her daughter was not permitted to help her get settled. Despite having Power of Attorney for health and welfare, her daughter had not been involved in any care planning and was struggling to get essential caregiver status.’’

-Paragraph 146

‘‘Tony tried to visit Rita through various different visiting restrictions. He once visited Rita in full PPE, and they were able to hold hands in gloves. At a point when direct visits inside the care home were not allowed Tony "kneeled on the ground to speak to [Rita] through a crack in the window."

-Paragraph 154

‘‘Necessary healthcare was simply not provided for extended periods (often for months) and individuals' health and wellbeing thus declined. We were told stories about care staff ill-equipped to provide medical care attempting to fill the gap left by medical practitioners' absence. We heard of people in pain unable to see a range of medical professionals. We were told about decline in mobility made worse by the absence of regular physiotherapy.’’

-Paragraph 164

‘‘One contributor to the booklet explained that her 99 year old grandma was currently isolating for 14 days for the 5th time, after repeated trips to hospital, resulting in a significant decline in her grandma's mental health and wellbeing.’’

‘‘Another contributor described how her father, who is blind and has terminal cancer and emphysema, would beg her not to remind care home staff about his hospital appointments, because he was so anxious about having to isolate again after returning from them.’’

-Paragraph 165

‘‘One helpline client told us in February 2022 that six months after being diagnosed by a consultant as having 3-6 months left to live, they were still being denied end of life visits with their loved one.’’

-Paragraph 174

‘‘We were told repeatedly of deeply shocking instances where families were prevented from seeing their loved ones because they weren't dying 'actively' enough.’’

-Paragraph 178

‘‘An`outbreak' of Covid-19 (which was often defined as 2 positive tests and…

‘‘led to many health and care settings being in a constant state of 'outbreak' throughout the pandemic.’’

-Paragrraph 180

‘‘One family member told us "I've been working really hard to keep mum living well with dementia, to stimulate her. That's now fallen off a cliff. COVID has pulled up the drawbridge. I feel so shut away from her."

-Paragraph 187

‘‘One adviceline client in August 2021 told us about their loved one who was living in a care home that their `medication was changed without consultation with them..

..and they were placed on medication they had previously had a bad reaction to.'‘

-Paragraph 188

‘‘Our adviceline heard of the immense challenges older people faced communicating with people wearing PPE.

..For people affected by dementia, face coverings could cause confusion and distress.

For people with hearing loss, face coverings made it extremely difficult to hear and understand, especially for people who needed to lip-read. This hampered their ability to communicate with care and health professionals and engage in decisions about their care.’’

-Paragraph 194

‘‘In some cases the substantial impact on communication (from PPE) was irreversible. For example..

..one family reported that their learning disabled daughter had lost her ability to speak.’’

‘‘In Autumn 2022, one care home manager told me that..

..some residents had not seen the faces of those caring for them for 2.5 years.’’

-Paragraph 197

‘‘We noted that in some cases we were hearing of problems relatin..

..to "lack of food or fluids leading to malnutrition/dehydration", and "neglect or lack of care leading to harm/suffering".

-Paragraph 207

‘‘We also heard of concerns that medication may have been administered when it should not have been, possibly hastening death.’’

-Paragraph 227

‘‘ One testimony of a daughter whose mother lacked capacity on this decision states ...DNR put in place without my knowledge or permission — I am daughter'.’’

‘‘One survey respondent and relative said: It was explained to me that the NHS was too busy to cope during the pandemic.

..decisions were made to not actively keep someone alive if their age and condition meant the outcome would not be in the NHS's interests.’’

-Paragraph 233

‘‘There are also concerns that people had coronavirus listed as their cause of death inappropriately in circumstances where they in fact died of other causes but due to lack of testing and the presence of certain symptoms Covid- 19 was recorded as the cause of death.’’

-Paragraph 259

Thoughts

Well done if you read all of the above. So much evidence of widespread policy harms not viral and those with dementia suffering the most from those restrictions.

‘‘It was not long after the pandemic broke out before all members of our Core Participant group began to hear stories about the effect restrictions on visits in and out of care homes were having on people living in care, especially those living with dementia (who make up about 70% of the care home population in England). There were reports of people suffering increased anxiety and distress; loss of weight, speech and mobility; changes in behaviour…

…and rapid declines in their conditions.’’

-Paragraph 110 of statement

‘‘Helen Wildbore, from the Relatives and Residents Association, told us:

Restrictions have had a hugely detrimental impact, not just on residents' mental well-being but physically. We know that people have stopped eating and drinking. They have lost weight, mobility and speech. These restrictions are isolating for family members and friends on the outside too, locked out of the usual roles that they play as a loved one, as a carer and as an advocate. They are feeling guilt and pain, anxiety and frustration, but they feel powerless…

..People tell us that they are grieving for someone who is still alive.’’

-Paragraph 144

Thanks for your attention.

Like, share and comment if you care.

Denis’s Substack Joseph Hickey CORRELATION HART World Council for Health Martin Neil Norman Fenton Maajid Nawaz Bev Turner 🌸 Steve Kirsch Jerm Children's Health Defense Dr. Paul Alexander Lioness of Judah Ministry James Roguski James Hill, MD UK Column John Campbell

End