“The first responsibility of any government is to protect its citizens” —Matt Hancock August 2020
The first witness was Ellen Clifford, a disability consultant. She began by saying that while disabled people make up 20% of the UK population, they had been disproportionately affected by covid, accounting for almost 60% of deaths by November 2020. There were several key factors accounting for this.
Many older disabled people and those with learning difficulties live in care homes or supported living settings. They had suffered in large part because patients had been discharged from hospitals into these settings without being tested for covid, and also because of a lack of personal protective equipment (PPE) and poor social distancing.
In addition there is a historic link between disability and poverty. Disabled people are three times more likely to live with severe material deprivation, and as a result couldn’t afford to stay at home and shield.
Lastly, long standing unequal access to healthcare for the disabled was exacerbated by the pandemic. The clinical frailty score had been used “overzealously” to limit disabled people’s access to hospital and Intensive Care Units (ICU). Clifford said the government had wanted to avoid images, such as those that came out of Italy, which suggested that they had lost control of the pandemic. Withholding treatment and keeping people out of hospital was one way of doing that. Disabled people were driven to creating “hospital passports” in order to persuade medical professionals that they deserved admission to hospital and life-saving treatment.
Clifford noted that many disabled people worked, and had been forced by employers into work situations that put them at risk. She felt that the government should not have pitted the economy against public health as the two go hand in hand. She noted that the brutal effects of recent welfare reforms and “austerity” meant that the social contract was broken, and many, especially the disabled, didn’t trust the government and its messaging.
“We (disabled people) were not considered a priority, in fact I would go so far as to say that possibly there are those in power, who saw this as a useful opportunity to get rid of some of those of us who they consider a burden.”
The next witness was Martin McKee, professor of European health at the London School of Hygiene and Tropical Medicine.
McKee discussed why the UK death rate was so high. The countries which did best were those which implemented restrictions early, but the UK locked down late. Boris Johnson, the UK prime minister was absent from the first five Cobra meetings when time was of the essence because the infection was spreading exponentially.
“Models that we have done indicate that we probably would have saved about half of the lives lost in the first wave by locking down a week earlier.”
After locking down the UK still had problems because we lagged behind others with our testing capacity – having contracted out test, trace, isolate, and support we ended up with a “bizarre and ineffective model.” The UK had also allowed its stocks of PPE to run down, even exporting some as a donation to China. The NHS had fewer beds and ventilators than other comparable countries.
Finally, and importantly, the government didn’t support people to isolate, particularly financially, which meant that the chain of infection wasn’t being broken.
In response to a question about care homes, McKee said that the government hadn’t thrown a protective ring around them. He said it was known that care homes, like prisons and cruise ships, were “institutional amplifiers” and that infection would spread very quickly in them. Unfortunately this was what happened as it was not recognised as a problem.
“In our modern economy, prisons, care homes, and immigrant detention centres are a means of monetising the storage of human beings. They have a different set of objectives and the idea that they’re there to look after people is missing the point. They are essentially financial vehicles, which happen to have people in them.”
Going forward he called for maximum suppression of the virus, as had been achieved in countries like Australia and New Zealand. He felt the government needed to consider the needs of children and those with long covid. He wanted to see the NHS properly resourced, in particular with adequate staff and beds. Finally he said the country needed to deal with fundamental inequalities in society, so that we had far fewer vulnerable people living precarious lives.
“We need a captain on the bridge who has a plan and knows where they are going. At the moment we have a crisis of governance, with lack of accountability, scrutiny, and judicial review.”
The next witness was Clare Phillips, a senior manager working in supported living services, which support, for example, those with learning difficulties or mental health needs. Many people in these categories are able to live in the community with help such as personal care.
Phillips felt the sector had been largely forgotten about in the pandemic. Guidance was initially lacking and then changed frequently. PPE was not available, and they had to source and pay for their own. Donations came in from restaurants and catering firms. It was very difficult to get staff tested for covid, so that if anyone had the slightest symptom they had to stay off work. At one point half of their staff were off for this reason.
Phillips said they were very worried about what would happen to people in their care who had to go into hospital, so they provided everyone with “hospital passports”. These explained the diagnosis, medications, and needs of individuals, some of whom would not be able to advocate for themselves if separated from their usual support worker who knew them well.
There was also concern about applying the clinical frailty score (CFS) to those with learning disabilities. The support teams asked that those they cared for be assessed in the same way as anyone else, and that the CFS not be applied.
Phillips was asked how she felt about Boris Johnson’s statement that “too many care homes didn’t really follow the procedures in the way they could have.” She said she had felt “incredibly angry.” The sector had been left without PPE, and without guidance, and had done the best they could. They had trained staff quickly in infection control, and provided enhanced PPE as soon as they were able.
“We’ve got passionate committed staff. Everyone pulled their weight, everyone has done everything they could.”
Going forward she wanted to see better testing for staff and vaccines for those with learning disabilities.
She confirmed that the government had never approached the sector to discuss the special needs of the vulnerable people in the community.
“It makes me angry. Boris Johnson has forgotten this whole group of people who have died at six times the rate of their peers in the general population.”
The next witness was Rachel Clarke, specialist palliative care consultant.
Clarke explained that palliative care is a Cinderella service, and the vast majority of services are not funded by the government, but by charitable donations. It went into the pandemic “desperately understaffed and underfunded.”
Hospices and care homes had different supply routes for PPE. Initially her hospice was only provided with plastic aprons and enough masks for two days. Matt Hancock was touting a 24/7 PPE hotline, but they couldn’t get through to anyone. Eventually their medical director managed to talk to someone, who told them there were no more masks. The medical director explained that this meant they would have to send dying patients from the hospice to the local hospital, which was already being overwhelmed by covid patients. They were given another Department of Health number, which no-one answered.
Clark said the “hotline” was thus a nonsense and they had had no way of protecting their profoundly vulnerable patients. She finally managed to get some masks via a charity which had sourced them from building contractors. Other hospices were facing the same problem, pleading via social media for the public to donate masks.
“We were talking to local businesses, veterinary practices, anyone we could think of because we couldn’t get them from government. It was a complete dereliction of duty.”
Clarke then addressed the government message “Stay home, save lives, protect the NHS.” Many did this, either because they didn’t want to burden the NHS or because they were afraid of going into A&E departments. This resulted in excess deaths, either from acute illnesses such as heart attack and stroke, or late presentation of serious illnesses such as cancer. In addition some patients who already had terminal illness were made to feel as though their lives weren’t worth saving.
“Every politician likes a photo op in our hospice, but in terms of actual meaningful resources, they’re just simply not adequate. The end of life in any civilized society should be a core part of the National Health Service, and it just isn’t.”
What emerged strongly from this session was that the services that look after the vulnerable such as the elderly, the disabled, those with learning difficulties, and the terminally ill were already inadequately funded and supported when the pandemic broke out. The government took no special measures to protect the vulnerable, but instead allowed them to be exposed to covid, which resulted in a significantly higher death rate than the rest of the population (the elderly in care homes for example were three times more likely to die of covid than the elderly in the community). Witnesses agreed that far from putting a “protective ring” around care homes, the government had left them without resources or recognition of their particular problems.
The vulnerable were threatened by blanket Do Not Attempt Resuscitation orders and clinical frailty scores when they felt their lives were as just as valuable as other peoples.
Jacky Davis, consultant radiologist, founder member of Keep our NHS Public, panel member of the People’s Covid inquiry.
Competing interests: none declared.