Omicron: How disabled people manage the health system, hospital visits during outbreak
Tuesday, 1 March 2022
Dr Robbie Francis-Watene had just given birth to her first baby, Mita, when, two weeks later, the country went into level 4 lockdown in August 2021.
“I was a first-time parent and I didn’t know what kind of signs and symptoms to look for and if they were serious or not,” she said. “I found myself in a position when I thought something was normal when it actually wasn't and my health deteriorated really quickly.”
At the time she was only able to see her midwife and GP virtually, and she downplayed her symptoms.
“We are used to living with pain and discomfort, so a lot of disabled people have this attitude of ‘I don’t want to bother people, I’ll be fine and I’ll just get through it’.”
**READ MORE:
* Covid-19: A guide to looking after yourself - or someone else with Omicron - at home
* Disabled woman trapped in bed for more than 16 hours due to staffing issues
* Many disabled people being failed by vaccine rollout, supporters say
**
The 33-year-old lives with a condition called phocomelia and uses a prosthetic leg.
On Tuesday, there were 373 people in hospital with Covid-19, nine of whom were in intensive care or a high dependency care unit.
“I shudder to think what it’s like for disabled people accessing the hospital system now,” the disability rights researcher said.
“Not only is it physically demanding on your body, but psychologically demanding as well. It’s scary because we know that disabled people are significantly affected by Covid-19 symptoms if we get it.”
After giving birth, Francis-Watene was hospitalised three times. She was able to have her husband with her two times, “which was really helpful”.
But the third time was during level 3 lockdown and hospitalisations from the Delta outbreak were on the rise. She arrived at hospital when there were Covid-19 patients in the emergency department and hospital staff “strongly discouraged” her from bringing in her baby because the hospital couldn’t guarantee the baby’s safety.
Her health was deteriorating so badly, she decided she had to be admitted.
She ended up in a curtained room in ED because the hospital was so full, and it took 10 hours to finally be seen by a doctor.
“As a disabled person and being surrounded by Covid-positive patients, I was quite distressed.”
Despite her experience, she said the medical staff “were brilliant”.
“Covid has magnified health issues that have always existed, these are things we have always had to consider, but now they are amplified because of the stresses of the system and the stresses of isolation,” she said.
“It’s really brought to light the challenge we have in accessing the right to the highest attainable standard of health.”
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Becki Moss also faced the hard decision of whether she was “sick enough” to go to hospital during lockdown.
“You’re weighing up whether it’s worth it and asking yourself if you’re going to catch Covid being in there,” she said.
The 26-year-old Aucklander, who works as a visual storyteller, is chronically ill with kidney disease and has high blood pressure and endometriosis. She has kidney infections every few months and often needs acute medical attention from hospital.
“Having a relatively intimate experience of the medical system and hospitals the last two decades, it’s really hard because you go there, because you need to go there,” she said. “But you also feel guilty for being there, because [the staff are] so burnt out.”
Moss got a kidney infection in October 2021 when New Zealand was in level 4 lockdown.
She was in hospital overnight and was able to treat the infection with a “ginormous amount” of IV antibiotics.
In preparation for Omicron and avoiding hospital visits, she has talked to her family and GP about how she can stay healthy enough so she doesn’t need to go to hospital.
She feels “incredibly grateful” that her hospital visits are much less frequent now.
“It is scary, but the scariness is also worry for the people working in those situations.”
Moss said it’s been “frustrating” that the Government has provided “ambiguous” information for the disability community.
“No one’s talked about what happens when disabled and chronically ill people start getting this,” Moss said.
“It’s been just really frustrating that it’s just been forgotten, despite the fact that we know that people who are high-risk are going to get sicker. We know that people like myself, with high blood pressure and kidney disease, are highly likely going to get more sick with Covid.”
What would make it easier
To reduce the risk during the Omicron outbreak, Moss and her flatmates have been in a “quasi-lockdown”.
They’ve shared each other’s health information with one another – such as NHI numbers and medical conditions – in case something happens.
They have a list of support people outside the household who can deliver food and bring medication. Moss said this helped with “emotional preparedness” too, and knowing the people you are living with are on the same page.
She said something like a community clinic – an intermediary between a GP and hospital – so people like her can access acute care while also avoiding Covid-19 patients in ED, would be helpful.
People with additional health needs needed to remember that “retaining the level of self-worth in order to get care is important”, Moss said, “and realising you do know your own body, like disabled and chronically-ill people know their bodies so well, and you know when you need acute medical attention and to still seek that out.”
Francis-Watene’s advice to other disabled people who may be hospitalised during the outbreak was to mentally prepare for the possibility of being on your own, and to ensure that mental health support is in place.
Having a support person there made “all the difference”, compared to when she wasn’t allowed to have a support person with her in hospital.
“The shock of not having a support person really hit me,” she said. “Because I was scared. I was scared for my baby, I was scared for my health and I was immobile.”
‘Prepare your Covid kit’
Many disabled people have “no other choice” but to start putting their own plans in place to prepare for getting Covid-19 or going to hospital, lawyer and researcher Dr Huhana Hickey said.
“Under the Human Rights Act, disabled people have the same protection and rights as everyone else,” she said. “The problem is now that so many people have succumbed to the virus … so particular groups can’t be individually protected.”
She said from the beginning the Government hadn’t properly prepared the disabled community, or factored in their risk from the virus and, with the Omicron wave, “now it’s too late”.
She said at this point in time, many disabled people needed to take on their own self-responsibility and responsibility for whānau members who can’t make their own decisions, including preparing a “Covid kit” (her recommended list is below).
“The reality is that we have to accept we may not get the help in time, we might be left without help, such as the shortages as staff get sick,” Hickey said.
It was important that disabled people advocated for themselves, and that also meant the people making the decisions were reflecting on what they were doing, she said.
If things went badly or disabled people felt neglected during their experience through the health system, Hickey said: “Do not be afraid of the Human Rights Commission or the Health and Disability Commissioner and lay a complaint.”
A disabled person’s Covid kit
Instructions on a person’s disability and care needs.
Support people contact numbers.
List of medications and when you take them.
If you need support workers, Hickey advises having a pre-written agreement with support-worker staff and permission from hospital that a support worker can be with the disabled person if they need the extra care while in hospital.
Paracetamol, throat lozenges and sprays, lemon and honey drinks.
Food for the hospital – If you are needing hospital care, they might not be able to cater to every food allergy and dietary requirement. Hickey always packs water, protein bars and a bottle of lemon, honey and ginger in case she can’t eat the food. “It's boring but at least I'm not missing out on food.”