A hospital in New Zealand discharged a 34-year-old severe myalgic encephalomyelitis (ME/CFS) patient to a care home for pensioners. There, staff were hugely ill-equipped for her care and the environment utterly inappropriate for her condition.
Now, she’s seeking to return to the hospital that previously treated her. However, it’s a no-win situation. This is because the hospital setting will also likely make her ME worse. What’s more, it’s there that doctors and some clinical staff abused and neglected her before.
Of course, it’s an all-too frequent and familiar story for people living with severe ME. Once again, the diabolical lack of ME-informed clinical care, treatment, and social safety net is driving an extremely sick chronically ill young woman into yet another unconscionably helpless situation.
Severe ME/CFS: Rhiannon in New Zealand
Rhiannon is a 34-year-old woman living with severe ME/CFS in Wellington, New Zealand.
ME/CFS is a chronic systemic neuroimmune disease which impacts millions of people worldwide. Similar to, and sometimes overlapping with long Covid, it affects nearly every system in the body and causes a range of symptoms that impact patients’ daily lives. These include influenza-like symptoms, cognitive impairment, multiple forms of pain, and heart, lung, blood pressure, and digestive dysfunctions, among other significantly debilitating symptoms.
Significantly, post-exertional-malaise (PEM) is the hallmark feature of ME, which entails a disproportionate worsening of other symptoms after even minimal physical, social, or mental activities.
Rhiannon explained to the Canary that:
I developed ME/CFS at 11- after a 24 hr vomiting bug. Spent a few years in bed. Then on and off in and out often worsening over winter to bed ridden again. At 16ish I developed fibromyalgia and the pain became my main issue still with mild ME/CFS with regular PEM episodes. And episodes of decline.
And for Rhiannon, it was the Covid vaccine that initially triggered a worsening in her ME. She told us that:
The vaccine then dropped me to moderate. The second vaccine dropped me into severe pain and bedridden. I used LDN [low dose naltrexone] and thought I was recovering until I went back to uni. Overdid it and then had a friend die sending me all into very severe rolling PEM for seven months straight.
So now Rhiannon lives at the severe end of the scale for ME and has been “bedridden ever since”. Those with severe ME are mostly, if not entirely permanently bed-bound or hospitalised. On top of this, they are often unable to digest food, communicate, or process information and are fully dependent on others for their care.
Crucially, severe ME can be fatal. The recent inquest into the death of Maeve Boothby-O’Neill after an NHS hospital’s catastrophic litany of failures, is a harrowing reminder of this.
Until June, Rhiannon’s mother had been her primary and full-time caregiver. However, after her mother underwent surgery, she was no longer able to continue as Rhiannon’s carer. It was at this point that Rhiannon entered Wellington Hospital.
Shunted into an ‘aged care facility’ ill-equipped for severe ME/CFS
Tuesday 12 November marked 194 days Rhiannon had spent in hospital to seek treatment and support for her severe ME/CFS. It also marked Rhiannon’s last day in hospital – and the date it shunted her into a ‘specialist aged care facility’.
Pōneke House is a 49-bed care home in Newtown, Wellington. It’s a residence for people aged 65 or over who cannot manage in their own homes, or disabled people 50 or over who need 24-hour care.
In New Zealand, residential care facilities will sometimes accept disabled people with serious health needs under the age of 50. It’s why the hospital in Wellington was able to discharge her into its care.
If there could be a more perfect metaphor for reality not living up to bravado, it might be the welcome sign pasted to Rhiannon’s door at the home. It’s a laminated A4 print-out in landscape. A profusion of tropical flowers frame ruby red text, the shadow effect setting her heavily stylised name apart from the pink backdrop, reading in block capitals: “Rhiannon – welcome to Poneke House”. Above this and her door number is another glossy plaque. Nondescript stock illustrations of a chaffinch mid-flight adorn either side of her name in bold black capitalised letters.
It’s a well-intentioned gesture, but the Comic Sans-like quality of the text and liberal use of early millennium Microsoft WordArt make the dissonance of her stay in the aged care residence only that much more blatantly jarring. Overall though, the point it underscores is more that the flourishes and florid language belies a more significant issue with placing a young severe ME patient into an aged care residence.
Pōneke House’s sleek brochure bristles with appealing and warmly-lit photographs, reeling off a list of its facilities. In one bold statement, it claims:
Everyone enjoys the relaxed, friendly atmosphere at Pōneke House and residents are always treated with the respect and dignity that comes with our personalised care approach.
However, if that all sounds a bit too good to be true, that’s because it is. This is far from the experience Rhiannon has had since she entered the home.
A day in the life of Rhiannon’s ‘care’ at Pōneke House
When the hospital moved Rhiannon to Pōneke House, there appears to have been no hand-over. As a result, the nursing staff at the home have so far repeatedly dismissed her needs – not least in terms of ME/CFS.
From failing to administer medication at the correct and consistent times, refusing to close her door, leaving lights on, and ignoring her requests for assistance, the staff have continued to put Rhiannon’s health and well-being at risk.
Rhiannon kept a short diary at the start of her stay. It’s peppered with accounts of the staff’s routine neglect in her care:
14th November
10:30 am: Medications due at 10:30 am were not administered until 11:15 am. Rhi’s condition is at serious risk due to inconsistent medication provision.
1:35 pm: Staff member refused to close the door, left lights on, ignored Rhi’s requests for assistance, and then closed the door in her face.
1:30 pm – 2:23 pm: Non-compliance with dietary restrictions: Rhi requested food at 1:30 pm, but it was served late at 2:00 pm, filled with spices and including eggplant, which is high in histamines contradicts dietary needs. Caused severe digestive pain.
Man never returned to empty commode and take away food
Advised to wear n95 to enter. They still seem unaware.3:39 at my worst
Food present with allergens:
Eggplant
The crumbed fish has seasoning I can’t have
I can only eat specific low histamine Dairy free gluten free and lowish fibre
Low fodmap food which needs to be carefully checked6pm: Commode still not changed 3 people have been asked in total all have either delegated or not done it.
I have had to hold bladder for hours its too full. I already dropped the lid in it. It smells like piss in here9:29pm: was told someone would come clean my room remove stuff – Never happened
whenever a nurse delegates a task it seems like it doesn’t occur or only is half completed ?
Ketotifen missed. Not getting given Panadol doses. Followed up with nurse about it. But not sure it’ll change.Carer came in: I asked for 3 things received only one again (A glass, remove the old food and rubbish bag). Not sure what’s going wrong here?
11:57pm: Someone entered my room without knocking or permission and then slipped away before I could see who it was?
Would prefer all my meds in the morning due to the issues I’m having.
Not safe for severe ME/CFS patients
Her journal is in sharp contrast to the claims the care home makes too. The brochure says it provides “dietician-approved meals and catering for special diets”. By contrast, it has ignored Rhiannon’s dietary needs around ME/CFS, causing her extreme gastric pain and PEM crashes. She was also assured that she would be living in the “quiet” part of the residence. Again, this hasn’t quite been the case in reality. There’s ongoing noise and disruption at all hours from staff and residents. Besides this, her room is regularly above 25°c, and since arrival, her fatigue and tachycardia has ramped up.
Rhiannon told the Canary how eventually, staff had fixed the issues with the food that had been essentially poisoning her. However, she then learned that staff hadn’t been providing her the correct dose of her medication. This had likely also heightened her gastric issues, causing her severe gut pain.
And issues with her medications has been a mainstay of her time at the home more broadly. She expressed to the Canary how staff hadn’t given her another of her medications in over a week. A nurse also hadn’t known the difference between two different drugs Rhiannon takes to help manage her symptoms.
Rhiannon has written about other instances of disgraceful treatment in the care home on her X account. In one post, she described how a nurse had laughed in her face when she’d requested one of her medications:
Nurse who knocked in my door at 4 am for no reason
And opened door at 11:30 – to check a bed ridden patient was in bed ?!!? Just laughed in my fucking face when I asked for PRN meds that the doctor had incorrectly logged and said that I received lorazepam last night— Rhi (@rhirhiarhii) November 16, 2024
Sent to the care home based on ‘multiple lies’
Moreover, its supposed “unparalleled quality of personalised care” has clearly been anything but. Rhiannon made the staff a care plan, but they’ve not implemented it to date. Of course, that’s the rub: even supposing the nursing staff were giving her high quality care – which they’re patently not anyway – they simply have no training in care for people living with ME/CFS.
Rhiannon told the Canary that:
I was sent to an unsafe care home based on multiple lies from that care home, they cannot meet my basic needs including getting a sleep that isn’t interrupted at all hours by yelling, this is worsening my condition to the point I cannot even do basic tasks like speak and even using phone is becoming inaccessible, each day I get worse. There’s no cure or treatment. If I get worse that’s it.
Rhiannon has continued to fight for the care home staff to meet even her most basic needs. But the combination of staff ignorance on the condition and a room poorly set-up for a severe ME patient has meant the care home is actively harming Rhiannon.
It’s little wonder then that Rhiannon is now desperate to leave the home. She told the Canary how she feels her only choice is to return to hospital. However, as she rightly pointed out, this isn’t a safe place for her either. She expressed that:
Care homes clearly aren’t safe for us. Hospital is safer here which says a lot.
Hospitals: a hotbed of harm
The Canary has written extensively about the harms of the hospital environment for people living with severe ME/CFS.
For instance, the Canary’s Steve Topple has documented a litany of abuse and neglect from clinicians at multiple UK NHS hospitals. In the last couple of years, this has included multiple women living with severe ME and common comorbidities associated with it. Most recently he wrote about 24-year-old Carla Naoum who West Middlesex University hospital has now sectioned.
Alongside Carla, he also highlighted Fiona Wood’s recent experience in Royal Bournemouth Hospital. Fiona kept a regular record of the hospital’s missteps and failure to provide her adequate, ME-appropriate care. Crucially, she underscored clinicians’ repeated misdiagnosis and treatment throughout her stay that left her ultimately worse off than when she’d come in.
We’ve written about Anna in Australia trapped in an abusive household, who hospital staff have refused support and put at greater risk.
In Greece, psychiatric staff forced 26-year-old Katiana into a psych ward, after multiple previous visits dismissing her conditions. These invariably sent her moderate ME spiralling into severe – and her health has only continued to deteriorate.
Hospitals in Pakistan have continuously failed 29-year-old Nevra at every turn – and lack clinical expertise to treat her multitude of debilitating comorbidities. She’s extremely sick and getting worse by the day.
Over and again, the story from one end of the planet to the other, is a rinse and repeat of the last. Nowhere has the know-how, the will, or the compassion to treat severe ME patients and the common cluster of their co-occurring conditions.
Instead, the paucity in research and effective treatment, has left patients at the hands of an abusive medical establishment that gaslights them and perpetually lets them down.
Abusive, neglectful doctors – here we go again
It should come as little surprise then that Rhiannon has had multiple experiences like this in hospital in New Zealand as well.
Nurses administered medications incorrectly, and failed to wear masks properly around her.
In one dire incident, a doctor conducted a forced stand test to measure her CO2 levels. When Rhiannon expressed feeling faint, a nurse held her up against her will. Despite asking them to stop because her legs were burning and aching, the medical team continued.
Afterwards, Rhiannon said that the doctor told her in a “smug manner” that she would bounce back after drinking some ice cold water. Of course, this is not what happened. The period of forced standing triggered a severe PEM crash, and her understandable pain and distress left her uncontrollably crying.
And if that all weren’t enough, the hospital had initially placed Rhiannon in a room where temperatures were exceeding 28°c. The heat caused multiple conditions to flare. To begin with, the hospital provided two fans to help with this. However, these were filled with dust, and set off severe mast cell activation syndrome (MCAS) reactions.
Eventually, it did move her to a different side room. The temperature was safer for her there, but it brought with it other issues.
No mental health support
To make matters worse, in all this time, the people overseeing her care haven’t provided Rhiannon any mental health support either. The hospital promised this to her, but it has never materialised. That is to say, after spending close to 200 days in hospital and then being shipped off to an aged care facility for elderly people, clinicians have paid no attention whatsoever to her mental health needs.
As she relayed to the Canary:
as an inpatient I should have immediate access and I never did get it.
It seems almost ironic, given how quick clinicians have been to stigmatise ME/CFS as a psychological condition, and used this label to mete out abuse in so many cases against severe ME patients. There seems to be little to no middle-ground between weaponisation of psychological diagnoses and complete disregard for severe ME patients’ mental well-being while trapped in hospitals and other care settings.
A no-win situation, no options, just an illusion of choice
Overall however, Rhiannon feels that returning to hospital is still a better option. Of course, it’s also basically her ONLY option, since the state won’t fund her a full-time carer at home.
In hospital, Rhiannon will as a minimum have access to healthcare staff who can provide her appropriate medication. On top of this, some consultants had been more sympathetic and responsive to Rhiannon’s severe ME/CFS needs. Rhiannon described one nurse – Grace – who’s been fighting in her corner. She expressed how she:
was great and really protected and look out for me in hospital. We are friends to this day. I couldn’t have made it through hospital without [her].
Alongside Grace, Rhiannon said that her consultant Elaine had worked:
tirelessly despite an overloaded schedule to facilitate how she can.
Rhiannon explained that overall, she felt that the clinical staff who had been supporting her were operating under difficult circumstances. She expressed that:
Unfortunately there are no specialist ME/CFS at the hospital that have been able to provide any help and her care is often self directed. Thankfully her clinician supports her in these decisions.
However, the hospitals systems are currently crumbling in NZ and seem to create a significant barrier to accessing success, with requests put through for help ignored or rejected from specialists as an inpatient.
This has made it hard to access adequate support [and] have any sort of medical plan moving forward.
But she felt that:
In general the hospital has strived to put me in safe situations.
They’d placed her in an isolated ensuite room, and had enforced masking “as best they could”. However, Rhiannon said that it was:
not always possible in an underfunded overloaded health system reflected in the unsuitable and unsafe hot room.
Forcing Rhiannon through the emergency department
Moreover, Rhiannon came up against a significant snag in her aim for readmission. This was that the hospital had been refusing to expedite her through to the ward that previously cared for her. Instead, it bureaucratically stipulated she would need to enter via the emergency department (ED).
Obviously, this is extremely unsafe for someone living with severe ME/CFS and long Covid. The loud noise, bright lights, and risk of contracting a virus from other patients, could irreparably harm Rhiannon.
Rhiannon summed up the truly abysmal set of ‘options’ – if you can call them that – that were available to her as a severe ME patient:
My only options right now are wait in a place that actively harms me. Harm myself going in via ED. Or death.
Thankfully now, after Rhiannon’s concerted fight to get the hospital to readmit her, it has finally agreed to let her bypass ED – as it rightly should have from the beginning.
More problems foisted on the shoulders of a severe ME patient
Obviously though, it’s only a small win – as there’s still nothing in place for her to come back home or into the community after her stay.
To make matters worse, even knowing that Rhiannon is extremely sick with severe ME/CFS, the hospital and home have offered her no help in her move back. She explained that:
They’re taking me back but its created all these problems for me that I’m too sick to deal with and don’t have any help.
They’re admitting me with nowhere else to go. No one to help me move my stuff. They’ve dumped me with this hospital bed they refuse to take back. And I’m being hounded by the care home for paperwork. I’m actually just shutting down in the face of it all.
So to sum up, despite the fact she’s bedbound and requires 24-hour care, the hospital and home expects her to:
- Move all her personal possessions, medical aids, and other items herself, or otherwise arrange for someone to do this.
- Deal with a hospital bed – seemingly expecting her to move it or again arrange for someone else to move it.
- Fill out forms.
Of course, the reason Rhiannon has had to turn to the hospital in the first place is that she has no-one who can physically support her basic care needs. Quite how it expects her to do all this when she’s bedbound with severe ME is a mystery. More to the point, even supposing she could, physically moving all her stuff, or arranging someone else to do it, will invariably cause a PEM crash. In other words, the process will actively harm her health and likely cause her to deteriorate further.
Care home compounding all these issues around severe ME/CFS
Meanwhile, the care home is compounding all this by chasing Rhiannon for payment. Notably though, when the hospital originally moved her into the home, it indicated the state would cover her stay. However, Rhiannon has since learned she would have needed to complete forms for this. The hospital had neither informed nor provided her with beforehand. Specifically, Rhiannon told the Canary that:
The place that is actively harming me is trying to come for payment too when government said they’d cover it but never gave me the forms to do so prior to leaving. Nor was I informed these needed to be filled out.
She explained how:
they’re just billing my aged disabled mother randomly who is not even my primary contact.
Essentially, the hospital had given her no financial information, or even residential agreements for the conditions of her stay. She said that no-one had provided any of this:
until after I was already here informing me weeks later of the details and forcing me into agreeing to them.
That is, in the hospital’s rush to discharge her, it had given her none of the necessary information or documents about her residence at the care home it was forcing her into.
Listen to severe ME patients first and foremost
Rhiannon’s story is yet another harrowing and damning indictment of the appalling lack of care and support for people living with severe ME/CFS and complex comorbidities.
That the New Zealand healthcare system discharged her into an aged care home facility with no awareness or medical training for her condition – and that hospital staff have also treated her so disgustingly – should be a serious scandal. The fact that it’s not says everything you need to know about the state of medical care for ME patients in 2024.
Because, the fact is, it’s no better wherever severe ME patients find themselves across the globe. For Carla, Millie, Karen, Fiona, Anna, Katiana, Nevra, and now Rhiannon too – and doubtless countless others – it’s the same old, unconscionable story.
The names and places have stacked up, but there are currently no good solutions, no answers, no support. It’s severe ME patients like Rhiannon who understand the problems undergirding their day-to-day lived experiences best. In a heartbreaking post on X, she articulated that:
Fucking pissed ok
I’m so sad and angry
— Rhi (@rhirhiarhii) November 25, 2024
That’s exactly it. These are systemic failures, on a global scale. And people living with severe ME have every right to be furious.
Rhiannon has an ongoing fundraiser to help her with medical costs, ventilation equipment, supplements, and legal support, which you can find here.
Featured image supplied
