Extremely unwell eating disorder patients are having to be tube fed at home by their families owing to a lack of hospital beds, as the Royal College of Psychiatrists reports a rise in people being treated in units without specialist support.
Leading psychiatrists are urging the government for an emergency cash investment as the pandemic has prompted a rise in demand for treatment for conditions such as anorexia, amid “desperate pressure in the system”.
In interviews with the Guardian, a number of parents told of the struggles of helping a severely unwell person from home. A number of families said they had no choice but to tube feed their children at home daily.
Other parents said their children had been admitted to general children’s wards, where they were being treated by staff who had no experience of eating disorders. The families spoke on the condition of anonymity owing to concerns that publicly sharing their details would have a negative impact on their unwell children.
It is unclear how many patients are being treated at home, but Agnes Ayton, the chair of the Eating Disorder Faculty at the Royal College of Psychiatrists, said she had heard of people being unable to find beds and being creative in the community: “There is desperate pressure in the system.”
She said based on conversations with her colleagues, there had been a rise in people being treated in general wards. In Liverpool, she said they had 98 admissions to paediatric wards when they would normally have a maximum of 30.
“Similarly, in adult services in my area in Oxfordshire, the consultants are reporting 50 admissions for potential life-threatening eating disorders, and in a normal year we would have 10, so that would mean general hospital admissions.”
Ayton said a lack of beds meant “patients are spending more time, sometimes four weeks if not months on paediatric wards, which is not a specialist eating disorder unit in terms of care. It can help physically but psychological intervention is more difficult and the environment is more stressful.”
Hope Virgo, a mental health campaigner, said: “We don’t have any official figures, just … information from another carer running a support group of nearly 3,000 carers. From memory, this was 17 children or adolescents being NG [nasogastric] fed at home.” She said a further 20 were due to be ‘fed’ this way.
One mother who spoke to the Guardian said her child had been having treatment through children’s mental health services since January 2019. “The first lockdown had a big impact on treatment at that time, delaying home interactions. We were lucky, though, as she was one of four out of 12 who were not immediately sent home when lockdown started due to concerns over staffing levels.”
She added: “Since summer 2020, she has been home but relapsing. In November she stopped eating or drinking entirely and was admitted to a general hospital. This is no place for an eating disorder patient to be long term – there is not the mental health support needed.”
She said her daughter was in the hospital for 77 days. “For most of that she had to be restrained by security guards – three large men, twice a day – to be fed by NG tube … For the ward staff, too, this was difficult – they are used to dealing with appendectomies who stay for two days, not a 17-year-old being restrained and screaming, pleading to not be fed.”
A nasogastric tube carries food and medicine to the stomach through the nose. It can be used for all feedings or for giving a person extra calories.
In the end, the family decided to treat their daughter from home. “I am now running a single-person inpatient unit in our house … if I fail, does she end up back in general under restraint?”
She said it had recently become “a real struggle to get feeds done”. “She begs me to stop and let it (ie everything not just the feed) all be over. No parent should be having to feed their or any child at home,” she said. “I wake up and cry about the thought of getting through the day ahead, even with taking my own antidepressants to cope.”
An NHS spokesperson said: “The pandemic has turned lives upside down, hitting people’s mental health hard and NHS staff have responded rapidly to support those who need care, including people with eating disorders.
“Specialist NHS services in the community have stepped up to treat increasing numbers of people with an eating disorder and new and expanding community-based mental health care will provide support for 370,000 adults, as part of the NHS long-term plan.”
The minister for mental health, Nadine Dorries, said the government is committed to expanding and transforming mental health services in England, backed by an additional £2.3bn a year by 2023 to 24.
“With this additional funding, children’s mental health services will be significantly expanded, including allowing 2,000 more children and young people to access eating disorder services, and adult community support will be accelerated to bring forward the expansion of services for adults with severe mental illness, including eating disorders,” she said.