Fani Courtouke-Wright cannot recall the last time she slept properly.
For the last nine months she has been trying to get her teenage daughter, Sophia, a place in a mental health unit.
But a lack of specialist beds in the region means Sophia, who has a severe eating disorder, has been stuck at the Norfolk and Norwich University Hospital (NNUH) since the start of February.
When the 14-year old went in, having taken two overdoses in the last year and expressed suicidal thoughts, her parents expected her to be moved to a mental health facility for young people specialising in eating disorders.
But that never happened. Every time they have applied for a place, they have been turned down.
“I never thought that myself and my family would be in this situation,” Mrs Courtouke-Wright said. “The journey we are going through is a very lonely one.”
Before Sophia went into the NNUH, her mother had been trying to get her diagnosed with an eating disorder for months. She weighs just 36 kg and is 157cm tall.
“Currently the system is working slowly and children like Sophia are not getting the care they need,” she said.
“We live in fear that one day we will receive a call to say that our darling daughter has died.”
‘Too heavy for help’
Mrs Courtouke-Wright, 50, from Hingham, first noticed her daughter had issues with her mental health and eating when she was still in primary school, aged 11.
In October 2018 they visited their GP but she said when they weighed her, she was just a few grammes too heavy to be referred to the mental health service or any eating disorder charity.
“She became secretive and withdrawn,” Mrs Courtouke-Wright said. “She had always been a happy-go-lucky child and then she changed. Initially we just thought it was her approaching teenage years.”
Her parents said that when she moved to secondary school at Wymondham College, she found the change hard and told them she was being bullied.
She stopped eating at school and then asked to change her diet to veganism.
Then the lockdown of March 2020 came and things escalated. “She didn’t want to go outside because she was terrified of catching the virus,” her mum said.
According to Norwich charity Eating Matters, demand post-lockdown for help with eating disorders has quadrupled.
The charity said earlier this year that it was receiving 90 referrals each month, of which around 20 were for under 18s.
Guidelines say children with eating disorders should begin treatment within four weeks of a referral, or within one week for urgent cases.
But in Norfolk and Waveney, only 40pc of under 19s needing urgent treatment were seen within a week, according to figures from the region’s mental health service, the Norfolk and Suffolk Foundation Trust (NSFT).
Meanwhile demand for emergency mental health beds for children is also rocketing. The NSFT provided 30pc more bed days for young people this year compared to last year.
A spokesperson for the NHS in Norfolk and Waveney said: "Our clinical and specialist mental health teams are working hard to support Fani and her daughter, to continue to ensure she has the appropriate care and support for her needs.
“We understand it is worrying for families that have to wait for a placement and we are sorry that a bed has not been available so far, but we are reviewing this regularly and working closely with specialist units, whilst ensuring she receives safe care.”
Battle for a diagnosis
By the autumn of last year schools had returned and lockdown had temporarily lifted, but that did not help Sophia’s mental health.
On October 31 2020 she took her first overdose of paracetamol.
“She walked into our bedroom at 2am and told me, ‘I have taken an overdose’,” her mum said.
“I didn’t know what to do so her dad tried to make her throw up while I called 111 and then we went to A&E.” She stayed in the NNUH for five days.
When she came home, she had care in the community from agencies including the NSFT, but things got worse.
Her mum said she reduced her food intake to 500 calories a day.
“The doctor kept telling us it was depression and anxiety with disorderly eating, but not an eating disorder,” Mrs Courtouke-Wright recalled.
Without that diagnosis, she said her daughter couldn’t get the help she needed.
Christmas in hospital
On December 21 last year the family had an appointment to see Eating Matters; that date will stay with Fani forever.
Two days earlier she found out that Sophia had posted on social media that she was going to take her own life on December 21. They contacted the NSFT who told them to keep Sophia safe and go to the appointment.
Afterwards, they walked back through Norwich to St Andrews car park holding her tight and went to A&E.
Sophia stayed there for ten days over Christmas and was then discharged.
“We had no Christmas but in hindsight she shouldn't have come out of hospital because she was not well,” Mrs Courtouke-Wright said.
Sophia and her mum then went to Surrey for three weeks to visit relatives and things seemed to be getting better.
Mrs Courtouke-Wright said: “But then Sophia had a major crisis. She was screaming and banging her head against the wall.”
The family drove back to Norfolk the next day and at the start of February had an appointment with an NSFT doctor.
“We thought that she would finally get the diagnosis but it was the same as before,” Mrs Courtouke-Wright said.
Two days later, on February 5, Sophia took another overdose of paracetamol and her family took her back to A&E. She has been at the NNUH ever since.
No beds
Her parents expected her to be moved to a centre specialising in eating disorders, but nine months later they are still waiting.
“We have tried everything and have almost lost our daughter several times,” Mrs Courtouke-Wright said.
“They say her case is very complex but I feel it was made more complex by not diagnosing her sooner.”
Her family said they were very grateful to the NNUH staff for keeping their daughter alive in hospital, but her eating disorder has got worse while there. “It is not the right place for someone with mental health problems,” they said.
After a couple of months at the NNUH, Sophia stopped eating and could only be fed through a nasogastric tube while being restrained.
That has made the family’s search to find her a suitable bed even more difficult as very few units in the region will take patients with a nasogastric tube and none will accept a patient needing restraint.
Sophia was sectioned while in hospital for her safety, but in August that section was lifted and it meant Sophia did not eat for several days and was able to leave the ward.
After that near-miss Sophia was diagnosed with an eating disorder, but there were still no beds for her in Norfolk.
However, she had an assessment with a specialist unit near Cambridge.
“We were told that a bed would be available for Sophia as soon as they could, but her requirements were to have feeds without restraining,” her mum said.
“The system for allocating beds is wrong,” she said. “We are working with different levels of the NHS but can’t get a bed. You have to apply each week.”
The people responsible for making sure there are enough beds in the east of England for children with eating disorders are a body called the Provider Collaborative.
They said hospital admissions for young people with eating disorders had risen by a third in the east of England in the last year.
A spokesman said: "We are investigating this rise and creating improved access to treatment services within the community, offering care closer to home where a child can be supported clinically and by their family."
'Tsunami of cases'
Sophia's dad Steven, 59, said mental health services had to change the way they worked to deal with rocketing demand post-Covid.
“There is a tsunami of mental health cases and the only way the system has been able to deal with that is to close the doors ever more firmly and leave desperate families like ours on the outside,” he said.
“We are worried she will become institutionalised and not be able to cope in the real world.
“We have had nine months of beating our heads against a brick wall and being constantly worried about our daughter.
“Sophia needs some hope for the future. I’m hopeful we can get a space but it needs to happen in the next few weeks.”
In recent years there have been several cases of young people with eating disorders dying and failings within their care being revealed. This includes that of UEA student Averil Hart, who suffered with anorexia, and died in December 2012 after being failed by every single NHS organisation which treated her.
-For help with eating disorders contact Eating Matters on 01603 767062 or BEAT at www.beateatingdisorders.org.uk
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