‘Patients end up suffering’ - Anorexia service still failing patients, says father of teen who died in 2012
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'You have to wait for someone to recover or to die to get help.'
Those were the words of the father of an anorexic Norwich student who died just 10 weeks into her first term at university, as it was revealed there were still shortcomings in the care provided by services who were supposed to be looking after her.
Averil Hart was just 19 when she died on December 15, 2012.
She had been found collapsed in her flat at the University of East Anglia (UEA) eight days earlier and an investigation into her death last year found every single NHS organisation failed her in some way.
One of those organisations was Cambridge and Peterborough Foundation Trust (CPFT), which runs the Norfolk Community Eating Disorder Service (NCEDS), providing care for adults in the county.
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But a report prepared for a meeting of Norwich Clinical Commissioning Group's (CCG) governing body this month showed:
• Patients could only get into the service once another was discharged. Priority was given to planned inpatient discharges.
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• GPs were concerned they had to monitor patients while they were on the waiting list. Currently there were nine patients waiting to get into the service.
• The service was failing to recruit staff, including the position of a senior psychologist which had been advertised five times without success.
Averil's father Nic, 60 and who lives in Cambridge, said it was 'hard to believe' the service had not fixed some of the issues identified after Averil's death.
The Health Service Ombudsman report into her death found that during September 2012 'NCEDS were recruiting staff and struggling to allocate a therapist to patients waiting to be seen'.
A CPFT spokesman said: 'Recruitment to such a complex, specialist area is challenging, as it is for trusts across the country. The team in place are dedicated and committed to delivering excellent care.'
And on the specific role which had been advertised five times the spokesman added: 'It's a highly specialised role. There is a national shortage of NHS staff overall, and especially those who want to work in such a complex area of mental health.'
But Mr Hart said: 'Everyone is stretched but patients end up suffering because they're not getting the right treatment. I can't believe the Ombudsman report has come out and here we are still doing the same thing.'
He added that if patients are not accessing help, it often puts more pressure on A&E. He said: 'Each time that happens we increase the risk of that patient dying of heart failure.'
But the CPFT spokesman said it was normal for incoming patients to wait for current patients to finish treatment before being taken on. They said: 'This is a highly specialist but small service. Patients referred to the service are prioritised according to urgency of need and clinical risk.'
But they did not answer when asked what happens to patients while waiting.
Mr Hart had also been in contact with the family of Ellie Long, a 15-year-old schoolgirl from Wymondham who took her own life while suffering with anorexia.
The eating disorder service for children and adolescents is run by the failing Norfolk and Suffolk Foundation Trust (NSFT) and Mr Hart said there were many similar problems there.
At the conclusion into the inquest of Ellie's death last month, NSFT medical director Bodhan Solomka said the service was now up to full staffing.
But during the hearings, which last five days, the coroner heard how at the time there were just six people in the team meant to be looking after Ellie, when the number of referrals they were getting should have meant there was at least 20 people.
Mr Hart said: 'I went to see Nicki Long [Ellie's mother] and within a very short time there were a lot of common themes. Although Ellie took her own life, the service failures had a lot in common with Averil's case because we had a trainee with no experience of anorexia and we had a trainee looking after Ellie.'
One member of the multi-disciplinary team looking after Ellie was nurse Natalie Ajayi. At the conclusion of the inquest coroner Jacqueline Lake said while Ms Ajayi thought she would take responsibility for Ellie's care after she qualified, psychotherapist Tania Pombeiro felt Ms Ajayi already had that role.
Mr Hart said the family was still waiting for an inquest into Averil's death, but that it had been grouped with the deaths of two similar cases involving CPFT and was expected to start in October.
'It's taken us seven years to get an inquest,' he said. 'It's exhausting as a family. My other two daughter's and Averil's mum are trying to grieve. But I don't feel like I can let go. What happens to all these young people who should have been getting help and don't?'
Coroner could demand change after Ellie's death
The coroner is expected to decide whether to issue a warning to prevent future deaths such as those of Ellie Long this month.
At the conclusion of the inquest on January 16 senior coroner for Norfolk Jacqueline Lake said: 'Ellie Long took action which ended her life. The evidence does not reveal whether she intended to die.'
But she had not yet decide whether to write a report asking for changes to be made at NSFT. Coroners have a duty to write a report if they feel things could be done differently in order to stop similar deaths happening in the future.
Nicki Long, Ellie's mother, previously said: 'Ellie struggled with her mental health in the last few months of her life and we feel that she was not given the support and treatment she needed by the Eating Disorder Service.
'We look forward to hearing whether the Coroner considers that action should be taken by any of the interested persons involved in Ellie's care.'
Money should be ring-fenced, says father
One of the issues raised by Mr Hart was that government money did not always make it to mental health services, let alone eating disorder services.
It was a concern echoed by Tom Quinn, director of external affairs at Norwich-based national eating disorder charity Beat.
He said: 'The government has allocated £30m each year in children and young people's services but it seems that not all of this money is being spent as intended.
'The government and NHS must ensure that all frontline services receive the funds to be sufficiently staffed and provide care to everyone who needs it.'
The charity said action from government and NHS England is clearly needed to ensure that CCGs spend their additional funding for eating disorders on the purpose for which it is intended.