Content warning: mental distress, trauma, eating disorders, self-harm and suicide.
Many of us have seen that stomach-dropping text from NHS Test and Trace – whether on Twitter or in the flesh – telling us to self-isolate for “X” number of days due to potential exposure to COVID-19. Others have received the much more alarming message that our test result is positive.
If we have support around us and are fortunate enough to be asymptomatic, self-isolation is mainly dull, frustrating, lonely and probably involves some weird food choices and a lot of Netflix.
Nineteen-year-old Sedona was not allowed out of her hospital bedroom for two weeks after coming into contact with the virus, and needed to self-isolate for six days every time she returned to her unit (another word for “psychiatric ward”) from A&E after needing medical attention. Suffering from anorexia and BPD, she is too unwell to go home, a decision taken out of her hands when she was sectioned under the MHA.
“In my old unit, meals were brought to my room where I had to eat on my bed, which was really hard. In my current unit, I had to stay in my bedroom and any staff entering had to wear full PPE,” she says. “I was on two-on-one observations [two staff members to one patient] due to high risk, but it was a bit of a blessing in disguise as it gave me someone to talk to.”
For inpatients with eating disorders, meal times in different environments can feel extremely distressing, and Sedona’s anorexia means that she is currently only able to eat comfortably in the dining room. “So, no oral food was offered when I was isolating. My feeds [nasogastric tube feeding] were done on my bed, which was not practical at all and ended up being pretty traumatic.”
When lockdown was announced in March 2020, Sedona was in a coma in intensive care after attempting to take her own life due to the stress of the pandemic. Having been in hospital since then, Sedona says, “I have watched wards go into quarantine, screaming patients locked in their rooms for not self-isolating, families stop being part of recovery, staff wearing full PPE, constant patient COVID swabs and wards being switched from homely to clinical.”
While relapsing within recovery is not uncommon, Sedona feels that self-isolating in hospital was responsible for significant additional distress when it comes to her mental health: “The first time I had to isolate, my PTSD brain was on fire. Being locked or trapped in a room is one of my biggest triggers.”
Alongside the turbulence for patients, enforcing restrictions while still providing appropriate care has been hugely difficult for staff to navigate. “The biggest challenge is trying to find a balance,” says a female healthcare assistant on an acute mental health ward in the North of England.
“The patients may be confused or present with aggressive or challenging behaviours. They have come into hospital for support and being alone in their bedroom may be counterproductive,” she explains. “At the same time, staff and other patients need protecting from infection. It feels impossible to keep everyone safe and cared for in a mental and physical sense.”
Paige, who was on day 15 of self-isolation in a psychiatric hospital in London when we spoke, was told that isolation must continue for all patients until the last active case of COVID on her ward is negative. The protocol in her hospital is that patients are only allowed out of their bedrooms at mealtimes to sit on individual tables opposite a staff member. Patients with COVID are isolated into different “zones”, with staff movement between zones heavily restricted.
The beginning of self-isolation, Paige says, “made me feel very claustrophobic and trapped. My trauma-induced responses increased”. Like Sedona, Paige has also been formally detained in hospital for the last year due to an eating disorder. She feels that the isolation triggered her disordered thinking and impacted her recovery. Much of her progress was reversed, and she needed intensive intervention to get adequate nutrition.
Paige was also unable to see her family for over five months upon admission, which she described as “the hardest experience I have ever gone through” as she was critically unwell and unable to leave her bed without a wheelchair. “Even when socially-distanced garden visits were implemented, asking my working parents to travel across the country to stand on the other side of the garden for 90 minutes was not something I could do.”
Despite all of this, Paige says that she does feel safe, adding that “It’s very apparent that the staff are working so hard to put measures in place as quickly as possible”, but there is a “mutual feeling that the mental health system has been forgotten”. She has spoken to hospital managers who didn’t know what coronavirus policies to follow “because there was just nothing to go by”. Across all settings, confusion around the coronavirus rules seems to be a reoccurring theme.
While in hospital, also for an eating disorder, 22-year-old Vicky struggled to keep herself safe when alone, so a “graded plan” had been put in place to support her so she could have a slow and gradual transition into spending more alone time. Six months into her eight-month admission, she started developing symptoms and was told to self-isolate immediately. She tested negative for the virus but had to stay in her room for nearly a week until the result came back.
“I had worked hard on having restricted access to my bedroom and bathroom but wasn’t ready for full access,” she remembers. “When I went into isolation, I was in my room all day, unsupervised for most of the time. This meant I relapsed into many unhealthy behaviours which led to a massive step back in my recovery.”
On eating disorder wards, patients are usually supported by highly trained staff post-meals, in “supervision” or “protected time”, as this is often when the person feels most distressed. As Vicky explains: “We had one-on-one meal support during our meals and for the protected time afterwards. Often, because the trained staff were in the dining room, we would be left with untrained agency staff, which was really difficult, but unavoidable.”
Both patients and staff are scared. “I felt quite unsafe during isolation,” says Vicky. “When I was engaging in dangerous behaviours, most staff were reluctant to break social distancing to restrain me, which meant there were multiple occasions when I was left engaging in destructive behaviours with no support.”
Vicky also told me that she went through “the most traumatic experience” of her admission during isolation when a fire alarm went off late at night and she was physically forced back into her room. The hospital had a personalised plan in place to keep her safe around fire alarms, but isolation meant this wasn’t followed. “I hadn’t been told what I was supposed to do in this situation, but I have a very bad reaction to fire alarms.”
She maintains that “the staff were incredible” as they were “so understaffed, often scared for their own health or taking the virus home to their families, but were always so supportive and dedicated.”
“But,” Vicky adds, “I wish the hospital had had more guidance from the beginning because it seemed like they were making it up as they went.”