Every Story Matters
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| Jen, who died alone in hospital aged 38. Her story matters. |
I still find this a troubling title. What about the impact on patients: will individuals and their human rights and needs be forgotten again in the focus on the system? Remember that slogan ‘Stay at Home – Protect the NHS – Save Lives’? I'm working with the Patients Association and Care Rights UK. We will argue that many people's lives were lost or blighted because of this focus on protecting the institution.
Why did the NHS need protecting? Because it was (is) so seriously lacking capacity that even pre-pandemic it was routinely in crisis. Remember the BBC2 series Hospital back in 2016, bed managers and consultants desperately searching for any available Intensive Care space to treat people in desperate need? Nothing had changed by March 2020. Britain still had far fewer beds per head of population than comparable European countries. Professor Chris Whitty, England’s chief medical officer, gave evidence on September 26th. He focussed on Britain’s fundamental lack of ICU capacity and pointed the finger of blame. “That’s a political choice,” he said. “It’s a system configuration choice, but it is a choice.” Professor Kevin Fong, also testifying to the Inquiry that day, stressed repeatedly that an intensive care bed is not a piece of furniture, it’s a team of highly trained people.
Fong had the unenviable title as NHS England’s NHS England’s ‘national clinical adviser in emergency preparedness’. He continued to work his shifts as a consultant anaesthetist during the pandemic but soon began a programme of visits to see what ICU conditions were actually like, particularly in the smaller hospitals who didn’t make it to the nightly TV screens. Fong broke down as he told the Inquiry what he had witnessed.
Chris Whitty also continued to work shifts, so did NHS England’s
Chief Nurse, Ruth May. She described what she had
learned as she worked alongside her fellow nurses in ICU. But she still had hard decisions to make within the limitations of the system and didn't try to conceal her anger at the political decisions which she believed had lost us the young nurses we need to keep the system functional. Northern Ireland’s former Chief Nursing
Officer, Charlotte McArdle, didn't work directly within the system, but experienced its ultimate harshness when she was denied access to her dying mother. She is now campaigning for the rights of all patients to be supported by a ‘Care
Partner’. I am a member of
Charlotte’s Advisory Board. I like and respect her. I felt sympathy for her as she endured harsh questioning as she gave her evidence.
What these questions revealed, however, was the gap between the ‘person-centred’ policy that Charlotte had tried to implement from the top in Northern Ireland and the reality of people’s experience living or dying within its hospitals (as she must also have discovered herself). Listening to her responses, and to so many of the testimonies so far, highlights the problem that people making policy within the health system are getting their information from others who are also working within the system. These are usually their peers, with whom they communicate in committees and working groups and ‘cells’ and ‘hubs’. People like Kevin Fong and Ruth May also make sure they also learn from the people directly affected by their decisions but these are usually fellow health service workers. These fellow workers are essential components of the system -- with their own important human needs -- but they are not the people for whom the system exists.
It's not enough to assume that what is good for health service workers is automatically also good for patients and families. How it the Inquiry to investigate both the impact of the pandemic on the system and the impact on patients and their families? The answer is to listen to their stories.
I’ve just read the first report from Every Story Matters, the Inquiry's ‘listening project’ and I think that I can see some of its concerns seeping into the questions asked. If this is more than an optimistic impression, it is very good. Patients and family members, as well as health care staff, have shared their personal experiences via Every Story Matters (over 32,000 of them) and various summarising and amalgamating techniques have been used to bring out key themes: the emotional toll of isolation, the experience of loss, the life changing impacts. People describe feeling ‘punished’, confused, frightened, ignored, angry, resentful, mistrustful, puzzled. 'Who had the right to treat us in this way?' asks a granddaughter when her grandmother is taken to hospital against her will, is neglected, lost, infected with covid and sent home again to die.
Little things are shocking – why was it okay to berate a blind person for being unable to find her way, alone, through the hospital signage to the maternity department? Or refuse to offer any alternative communication to a deaf person unable to lipread words spoken from behind a mask? Leave a father outside while his wife went in alone to discover whether their baby was dead? Why did the shouts for help of a confused and frightened grandfather go unanswered? And the biggest shame of all: why were so many people left to die alone or via ipad?
"My mother was lying on a bed with something out of space standing by her [a reference to staff in PPE], she was being told to wave to her family on an iPad she waved like a child and the zoom call ended. The doctor told her she's not going to wake up again, so she waved so hard to say goodbye to her family. I couldn't believe the doctors told her that, that she wouldn't wake up after the ventilator. We watched our mother on an iPad on a ventilator dying."
This is not to deny the goodness and, indeed, absolute heroism of so many health workers at all levels, both chaplains and cleaners. But the climate of fear, the inadequacy of ‘guidance’, the disregard of the laws which should protect the most vulnerable and our common human rights allowed some other people to behave in ways which were wrong. Stories, we know, bring people's experiences alive again -- even if they are dead, even if we never met them. This is why they matter.
On Monday September 9th David Wolfe KC ended his opening statement to the Inquiry by telling the story of Pam and Jen.
I would like to end by sharing the experience of Pam,
writing about her daughter Jen who died aged 38. Jen had a complex medical
condition which meant she had lived at home with both her parents. When Jen was
admitted to hospital pre-pandemic her parents would accompany her, continuing
her complex and specialist care.
At the beginning of the pandemic they were given a letter
from the hospital CEO to say this arrangement should continue. However, it was
then not accepted by the ward. Jen, separated from her parents, wrote to the
CEO saying she didn’t feel safe. She never got a reply.
Her mother describes how she felt when she watched her daughter
via Facetime, struggling and uncared for. ‘Every day I was phoning up to ask if
I could go in to look after [Jen] and every day I was given a different reason why
not, mostly centred about PPE. I was told Gold Command and later Silver Command
were making the decisions. I asked if I could come in to discuss this with them
and was told by a Matron that if I came to the hospital security would be
called.’
Jen’s condition worsened. She said she wanted to kill
herself. No one understood what was happening to her. Even when she had
suffered a series of epileptic fits, her parents were denied access. This was
on the grounds of reducing footfall and a lack of PPE. Pam offered to pay for
the PPE and to pay for Jen to have a nurse but was told there weren’t enough
staff.
Jen and her parents were told that the ICU would not
accept her. A DNR notice was forced on them.On January 21 st 2021, the
consultant said Jen would die during the day.
Her parents were finally told they could have an hour
with her and could split it if they liked. They had 30 minutes in the morning
but by the time they were called back in the afternoon, their daughter was
dead.
David Wolfe ended with a question
Perhaps the most difficult question before this Inquiry
is what caused some people during the pandemic to behave in this way and how
the basic human rights of patients and their families might be better protected
in future.
As long as my memory serves I won't forget Jen's story -- or Pam's bravery and pain as she told it. There are so many others -- and Every Story Matters. The Inquiry room should be thronged with ghosts until the 'system' is fixed according to the needs of the people who use it.
You can still contribute to Every Story Matters and
you can read its first record here.
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