NEW|UK COVID-19 inquiry|10 Jul 2025

Shocking testimony from Susan Lyons. John's Campaign, Care Rights UK and the Patients Association.

Jul 11, 2025

NB: Contains distressing details.

Introduction

Susan Lyons is giving evidence as the carer of her disabled 31yo daughter Sarah who lives with complex needs, including learning disabilities and epilepsy. As a result of her conditions Sarah needs 1:1 care and resides in a care home. Sarah was at home until 2 November 2020 so we was not affected by visiting restrictions that applied in her care home until then.

‘‘It was heartbreaking that for 6 months we could only see Sarah behind a Perspex screen or on a computer screen, we couldn't ever give her a hug, even if she was crying her eyes out to us.’’

-Paragraph 56 of statement

‘‘Young people with learning disabilities were treated with blanket policies designed for older care home residents with no regard to their physical, emotional or mental health or anything their famlies said.’’

-Paragraph 92 of statement

Testimony highlights

GP issued DNACPR without any consultation. Sarah would have been around 26 years old in 2020).

‘‘I was incandescent (when i received that DNACPR letter from the GP for Sarah)…this is yet another example of the NHS seeing her as a second class citizen.’’

‘‘Although she has human rights under the human rights act this had been disregarded really.’’

‘‘I didn’t see why i should agree to a DNACPR for a healthy young woman in her 20s.’

‘‘I just couldn’t understand why somebody in their 20’s could not go through CPR.’’

‘‘What worried me was that it was in the news doctors were applying DNACPRs on care home residents without their relatives permisssion and i was concerned the doctors would do that and it would be a proxy for no treatment for anything.’’

Lockdown concerns

Harms from restrictions outweighed risk of ‘COVID.’

‘‘The risk to her from her epilepsy far outweighed the risk to her from COVID.’’

‘‘We were told by a Great Ormond Street consultant..not to bring up anything stressful, she was worried Sarah would die in the night from sudden death and epilepsy.’’

‘‘No attention was paid to the risks from her epilepsy.’’

‘‘COVID was the only concern and her epiliepsy which was far more life threatening never came into consideration.’’

Remote contact

Isolation.
No privacy.
Mental health deterioration.

‘‘She was often in tears on the phone to me.’’

‘‘I could not give her a cuddle when she was upset for over 6 months.’’

‘‘If she talked to me about a member of staff she didn’t like….they could take it out on her.’’

Statement highlights

‘‘We already feared that if Sarah developed Covid, hospitals would refuse to treat her, on account of her learning disabilities, based on past experience.’’

-Paragraph 24

‘‘Sarah was a healthy young woman in her 20s, apart from her epilepsy, but she was imprisoned within four walls, with little opportunity for exercise or emotional support from us, her family, and we were prevented from assessing and providing valuable input into her care for 2 years. It felt to us like our daughter was being held hostage in her care home.’’

-Paragraph 35

‘‘If a resident got Covid, they were isolated in their room for 10 days, and the house was put into isolation for 28 days. The resident was only allowed out of their room to use the bathroom.’‘

-Paragraph 37.f

The impact of /IPC measures

‘‘When our daughter returned to her care home in November 2020, she had to be isolated in a flat for 14 days with her regular care workers. She couldn't go for a walk in the open air. We were concerned about this because boredom and inactivity increase seizures, and Sarah needs weight bearing exercise to strengthen her bones which was far more difficult to do indoors.’’

-Paragraph 39

‘‘Throughout the pandemic Sarah was more withdrawn and ate less. This was concerning to us because Sarah is a person, who lives to eat. Hunger is the major trigger for her seizures. She became more verbally abusive to staff and occasionally showed physical aggression, like hitting or kicking them.’’

-Paragraph 41

‘‘Sarah is heavily reliant on visual input to support comprehension of spoken language like facial expression. She found it difficult to hear the staff speaking through masks and could not read their facial expressions. She cried to me what hard work it was to understand the staff. As she was not getting the words reinforced every day for her memory, she forgot most of her vocabulary — her language fell off a cliff.’’

-Paragraph 42

‘‘If the visitor tested positive, they wouldn't be allowed to see their loved one. If they were negative, they had to wear full PPE and sit for an hour behind a Perspex screen talking to their loved one, who was accompanied by a care worker. There was no regard for privacy. I felt that this breached our rights to private family life and couldn't understand why this was necessary.’’

-Paragraph 47

‘‘When it was time to leave, she'd scream, "Don't leave me!" Sometimes she ran to our car screaming. The staff told us, she cried for two days after a visit. One time, in March 2021.’’

-Paragraph 51

‘‘The visiting restrictions meant Sarah had only four one-hour visits with us from November 2020 until May 2021.’’

-Paragraph 53

‘‘Access was still significantly restricted into 2022 very frustrating when many people had had two Covid vaccines I were testing, especially because felt that I could provide valuable input into Sarah's care and could provide her with important emotional support.’’

-Paragraph 58

‘‘We felt uncomfortable about the fact that all of our calls with Sarah were listened to. We considered that it did not give our family necessary privacy and made it very difficult for us to try and establish closeness with Sarah.’’

-Paragraph 61

‘‘When we reviewed the care records for the pandemic in 2024, it became clear to us that Sarah faced significant neglect during the pandemic. There were shifts when no carer was allocated to look after her, even though her condition puts her at high risk of death from seizures. On one occasion, a member of the care staff recorded having heard her crying in her room, beside her vomit after being left alone.’’

-Paragraph 69

‘‘In April 2022 Sarah told us she objected to the lateral flow tests done at the care home. We knew this was likely, as we had a hard job to do them on her — and she will do more for us, than she will for other people. I sought the advice on Mencap, who considered it was assault, if people with learning disabilities were making it plain, they didn't consent.’’

-Paragraph 77

‘‘In March 2020, I received a letter from the GP surgery asking us to confirm our preferences in relation to a DNACPR for my daughter. No discussions were had with me or my daughter prior to this…We were concerned that a DNACPR might be applied by doctors without us knowing after hearing reports about this on the news.’’

-Paragraph 78

‘‘Sarah's language and social skills deteriorated massively in my opinion, due to not getting reinforcement of her vocabulary, through hearing the words every day, and lack of social interaction.’’

-Paragraph 85

‘‘The IPC measures and impact of the pandemic on staffing levels and care quality put her at even greater risk of cognitive deterioration, mental health problems, challenging behaviour and dying from the epilepsy, due to measures supposedly put in place to protect her, but which in fact made her epilepsy worse, over what was for her just an exhausting cold.’’

‘‘I have never knowingly had Covid.’’

-Paragraph 91

‘‘I would like the government to take on board as a result of this Inquiry, that young people in good health with learning disabilities generally are not units of flesh and blood to be warehoused within four walls to protect them from a virus. People are social animals and need emotional support from their families and friends. The restrictions that were applied were inhumane and failed to consider the impact they had.’’

‘‘The rights under the Human Rights Act 1998, including the right to life, apply just as much to people with learning disabilities, and yet during the pandemic, the rates of death among the disabled were higher than the "normal population" and while some of this was probably due to underlying health conditions, I can't help but think that some of this was due to the tacit attitude that people with learning disabilities were second class citizens, and NHS resources were wasted on them.‘‘

-Paragraph 93

Thoughts

Once again the severe and inhumane adverse health consequences of lockdown not any virus is laid bare. How is any of the above demonstrative of a pandemic? And how would prescribing Ivermectin have helped resolve the following in 2020?