Exeter’s eating disorder crisis

Exeposé Features Issue 662, Page 10-11 (5 December 2016) and Exeposé Features online (14 December 2016)

Most of us know someone who has suffered from an eating disorder. We might even know someone who’s tried to access support in Exeter. But how many of us know someone who has actually managed to get the help they need in the city?

Sadly, it turns out things just aren’t that easy around here. And I know: I’ve been there. But I’m going there again, to try and figure out exactly what the issue is here in Exeter. We’ve got doctors, therapists, sufferers and campaign groups fighting for a service that doesn’t exist – all while trying to pick up the pieces themselves. Sounds like one big mess? That’s probably because it is.

“It’s ridiculous,” Charlotte Pinnock shakes her head. It’s the grey November morning after *that* election night, but surprisingly, we aren’t talking US politics. Today, the topic is eating disorder services in Exeter – or rather, the lack of them. It’s something the Mind Your Head president has personal experience of: her own struggle with anorexia highlighted just how little support is available in the city.

“You get passed from one group to another,” Charlotte tells me, “and everyone is saying the same thing: that they can’t really help you.” Something needs to change – which is why she has joined new initiative ‘Exeter Beats Eating Disorders,’ launched by fellow student Jennifer Fletcher. “It’s about spreading awareness,” Charlotte says, “and showing people that if we set these services up, there will be benefits.”

Jennifer qualified as a Beat Young Ambassador in September. She’s now part of a UK-wide volunteer network fighting to reduce the stigma surrounding eating disorders and increase awareness. I’ll be honest: when I met her and Charlotte this morning, I thought this would be a simple interview about a new project, hopefully giving it some publicity and helping to launch the campaign. But the more we talk, the angrier I’m getting.

“It’s so physical down here,” Jennifer sighs. “Because it’s so limited, they have to really strip back, and only deal with people who are at a life-threatening point. They’re not doing early intervention. They’re doing a last-minute rush because that’s all they can do.”

“What I don’t understand is why it is so bad here, and nowhere else in the country,” Charlotte tells me. “I’ve lived in the north, and in the midlands, and never before have I seen an issue like this. Is it due to poor management?  Because it doesn’t matter whether you live in Manchester, London or Exeter, people are going to have eating disorders. I don’t understand why it’s being ignored down here.”

(L-R) Charlotte Pinnock and Jennifer Fletcher. Image supplied by Exeter Beats Eating Disorders.
(L-R) Charlotte Pinnock and Jennifer Fletcher. Image supplied by Exeter Beats Eating Disorders.

“No-one has had a good experience with the eating disorder services in Exeter,” Jennifer adds. “At least, I’ve not come across anyone who has. It’s bonkers,” she shrugs.

Limited. Last-minute. Bonkers. Not words you’d particularly want to hear when you’re seeking help for an eating disorder. Is this really what we’re faced with in Exeter? “It’s almost like you’re in a bubble down here,” Jennifer says. “It doesn’t make sense.” It doesn’t. And I’m refusing to believe it. Surely in a city as big as this, there must be something available?
So what’s the first port of call for students who are struggling? I decide I’ll start with the obvious. After all, when I told a friend I was looking into Exeter’s eating disorder services, her initial response was: “Surely that comes under Wellbeing?”

Since opening in October 2012, Reed Mews Wellbeing Centre has become almost synonymous with the fight for better mental health provisions in Exeter. Back in chilly January 2014, Exeposé reported that the new centre had received emergency funding after a massive rise in students seeking support. Waiting times had crept up. Wellbeing was overwhelmed. In February 2015 Exeposé reported Reed Mews had been forced to close its CBT list because waiting times had exceeded the ‘cap’ of six weeks. Students left, right and centre were reporting that Wellbeing was an excellent service – it just wasn’t coping with the demand.

But have we been barking up the wrong tree all this time by focusing on Wellbeing?

“If you go to Wellbeing asking for help with an eating disorder, they’ll say you need longer support, and they can only support you for six sessions,” Jennifer tells me. “They’ll say: ‘you can do this, but it’s not going to be worthwhile because after those six sessions, we’ll have to drop you and see someone else, and you’ll have to start all over again.’ So they refer you somewhere else.”

In March, Head of Student Services Jamie Horsley told Exeposé that Wellbeing was “being asked to provide services that were never quite the original intention.” Head of Wellbeing Mark Sawyer admitted that “it may not even be safe” for the Centre to try and support students with higher risk conditions.

Final-year student Lily* can testify to this – and it’s pretty worrying to hear her story. “In all honesty I was really surprised with how quickly I managed to get an appointment,” she admits. “I went to Wellbeing and scheduled a phone consultation for two weeks’ time, then once they had rung me, I got given the six sessions.”

However, this was when the problems started. “The treatment itself was ultimately pointless,” she tells me, “because I didn’t know if I was at a point where I wanted to recover, and they don’t really know anything about eating disorders at all.” The person she saw would frequently mention that her weight was still in the healthy range, she remembers, “which is incredibly dangerous because it just made me determined to lose more weight so I’d be taken seriously.

“He’d frequently admit that he didn’t really know what he was doing,” she adds. “He was a really nice man, incredibly friendly, but I’d end up in tears at the end of every session out of pure frustration that he didn’t really understand what I was saying.

“Wellbeing in general is definitely on the up,” she says, “but their ED treatment is awful – because it doesn’t exist.”

This story’s obviously unnerving – and it would be easy to condemn Wellbeing after hearing it. But I’m hesitant to. Like she says, they do try and help students. This just wasn’t what they were designed for.

This much is clear when I ask Sawyer how Wellbeing helps students with eating difficulties. Their role “is to support students in their learning,” he says. They are “not part of the NHS,” he stresses – and they strongly recommend that students worried about their eating “should see their GP as a first step.”

“The Wellbeing Services team are here to provide initial support, not specialist treatments,” he adds. “Diagnosed eating disorders are usually best treated through multidisciplinary medical teams, and often within in-patient settings or closely monitored community programmes. It is rarely appropriate for university services to offer such treatments ‘in-house.’

“We always try to support students who are concerned about their eating and to look at how we can support them at university, and signpost them to specialist NHS services where longer-term treatments may be available.”

So Wellbeing recommends you see your GP. For most Exeter students, this means Streatham’s on-campus surgery: the Student Health Centre.

Lily had plenty of good things to say about the Health Centre. Remembering the staff there as “really helpful and lovely,” she’d even say that the surgery was “ultimately what helped me recover the most.” I can sympathise. I spent a lot of time here in my second year – and they were a lifeline.

My heart’s pounding with a weird sense of déjà vu as I step in from the dark on a chilly November evening and sign in at reception. I’m meeting Dr Jo Neumegen at the end of a busy surgery day. Everyone’s frazzled but cheerful, and between a discussion on how to put up the Christmas decorations and questions about what I’ll be doing over the holidays, I’m soon smiling.

It’s odd, settling down in Dr Neumegen’s room. It’s the same seat I spent hours sobbing in back in early 2014. Admitting I was too scared to be weighed that week. Counting down days until my NHS mental health assessment. Trying to decide whether I’d be better off just going home.

Dr Neumegen is kind and reassuring – even if what she’s telling me is awful. “Basically, there isn’t an outpatient eating disorder service in Exeter,” she starts frankly. Of course, I knew this already – but this time I’m here to ask: why?

“Well, the Devon Partnership Trust’s rationale – and I do partly get where they come from – is that an eating disorder is often part of a larger mental health issue,” she explains. “So if we have patients presenting eating disorders, we can refer them for a general mental health assessment, and they will look at providing support. But there’s no specific eating disorder service.”

This causes all manner of problems. “When a student arrives in Exeter, we might get a letter from their previous team saying: this patient has anorexia, please can you refer onto your local eating disorder service,” she tells me. “And we have to write back and say: well, actually there isn’t one…”

It’s not a situation she’s happy with. “We’ve been battling for years,” she sighs. “Because we are left providing an enormous amount of care. We’re very happy to provide medical care – we see lots of patients regularly for monitoring and support – but what we can’t give is specialist psychological therapy, and that’s what people need. So it isn’t ideal. And it leaves us feeling very vulnerable.”

So where can they refer people? Well, if you’ve just started struggling, you might benefit from “short-term therapy with Wellbeing,” Neumegen tells me. “Then if you are really physically ill and need hospitalisation, there is the Haldon inpatient unit. But there’s nothing in between. So we often feel we’re just trying to hold people together, when we actually should be reversing what’s happening.”

One thing Neumegen tells me I have to stress, though, is that the surgery will always see students who are worried about their mental health. “We’ll always see them, and we will always support them as much as we can,” she says. “I have people I’m seeing weekly, just to try and keep them safe.”

This kind of work takes its toll. “I think we feel as frustrated as a lot of the patients do,” Neumegen says. “It’s not nice to be seeing people week after week, just watching their weight fall, and feeling totally helpless to change that. We try – we use every technique we have – but we’re not psychological specialists.”

I’m not alone in viewing the Student Health Centre as a lifeline. “My GP was incredible, and quite simply, kept me alive,” recent Exeter graduate Yasmin tells me. “I will be forever grateful for the hours she dedicated to my care.”

Yasmin agrees that the on-campus services are doing the best they can in a bad situation. “My experience of Wellbeing was also a very positive one,” she says, “but ultimately I needed specialist input, and that was something Exeter just couldn’t
offer.”

Off-campus services have been mentioned a few times now. But in terms of Exeter, what does this mean?

Basically, the Devon Partnership NHS Trust is based in Exeter’s Wonford House Hospital. Within this service you’ve got the Haldon inpatient unit, and the Community Mental Health Team (CMHT).

Like Dr Neumegen mentioned, the Haldon inpatient unit is here for those physically at crisis point. For Yasmin, this was a very real prospect. “I was lucky enough to have fleeting contact with a psychologist at the Haldon, who worked very closely with my GP,” she tells me. “However, despite teetering on admissions, nothing ever actually happened – and then she left the service and I never heard any more.”

Haldon is Exeter’s only specialist eating disorder unit. Outside of its 12 beds and six “step-down” beds for those retransitioning to life after inpatient treatment, you’re in the hands of the CMHT. This is where I eventually got a precious few appointments when I was struggling. Weeks after my assessment, and months after the initial referral, it was too little, too late. I’d already started seeing a private psychotherapist for uncomfortably large sums of money – but it was either that or leave Exeter.

Neumegen knows this is far from ideal. “Students we refer might get a care coordinator who supports them,” she tells me, “but they’re not usually a specialist in eating disorders.” Even then, the standard wait for psychological therapy is a year to 18 months, she says. “So we do feel a bit helpless.”

Yasmin’s care coordinators “knew very little about high-functioning eating disorders,” she remembers. “They admitted that they were unsure what to do with me.” She also believes her illness wasn’t taken as seriously because she continued to perform well at University. “They would repeatedly tell me how amazing it was that I was doing a degree, and that most of their patients were barely functioning,” she says – which triggered thoughts that she was “totally unworthy and undeserving of any support, and a massive inconvenience.”

Charlotte also found herself struggling at Wonford House. “When I got referred there for the first time, they gave me a care coordinator who I personally didn’t need,” she admits, “because she couldn’t offer me any support for my eating disorder.”

Dual-postcode living and her impending graduation meant Faye never got the help she desperately needed in Exeter. “I wholeheartedly believe that had I been able to access specialist ED support as an outpatient two or three years ago, I would be in a much better place now,” she admits. “Instead, yes, I’ve graduated – but I’m now very unwell, and am looking at much more intensive treatment over the coming months, and even more time lost to such a horrible illness.

“I wish things could have been different for me – but more than that, it terrifies me to think that so many other people may suffer in similar ways. Nothing is more dangerous than turning someone away, when they’re living with an illness that is essentially trying to kill them.”

There’s obviously an overwhelming need for better eating disorder services in Exeter. So how is it that nothing’s changing? Is it funding? Does the South West receive less than other regions when it comes to mental health provisions? Because things definitely aren’t this bad back home in the East Midlands. Charlotte agrees with me on this. Yasmin’s deferring her MA because she can’t get the help she needs in Exeter. I may be jumping to conclusions… but if the only way Exeter students can get treatment is by leaving Exeter, surely something’s gone very wrong here.

Kathy O’Connor is a private psychotherapist based on Exeter’s Gandy Street. She offers support for a range of mental illnesses and disorders, and also supports students at the University’s Wellbeing Centre. I’m told she might be able to answer some of my questions, so I give her a ring.

Kathy confirms what I’ve heard about Wellbeing – that it’s an initial support service for students who are struggling. “We’re not a specialist eating disorder or trauma group,” she says. “What we’re trying to do is support people.” In this respect, its short-term model makes sense, because it means as many students as possible can access help. “If we opened it up to longer-term work, all of us would be tied into longer-term work with people and we wouldn’t be able to see as many students,” she explains.

So what are the options for students who need longer term support? “It’s a really tough one,” she admits. “Sometimes there are private therapists who can offer eating disorder services – for example, I specialise and do it privately.” She and colleague Jacqui Mann have also been running a support group for families of young people with eating disorders. It’s on hold currently but Kathy’s hoping to start offering workshops again in the near future – because there’s definitely a need for it. “It’s ridiculous that there’s no community eating disorder services in Exeter,” she tells me. “I absolutely don’t understand that and never have.” She and Jacqui have been “going to CCG meetings, we’ve been lobbying all sorts of people to try and get more eating disorder services out there,” she says, “and it’s just been falling on deaf ears.”
This is a new term for me. Turns out CCG stands for Clinical Commissioning Group. Created in the wake of the 2012 Health and Social Care Act, these statutory bodies basically decide where NHS funding is spent in the local community. Exeter falls under the New Devon CCG – so if funding isn’t being directed to eating disorder services here, it’s because the CCG is prioritising other things.

I ring Peter Leggatt, Head of Communications at Devon Partnership NHS Trust, to find out more. “We have a certain amount of money for mental health services, which gets broken down,” he explains. The total budget’s about £140 million a year – and there’s a “constant dialogue” between the Trust and the New Devon CCG. “We can’t provide everything,” he says. “I think it’s quite easy to say that there’s no specialist outpatient eating disorder unit in Devon and there should be,” he says. “And you’re probably right. But there’s not a special care baby unit in every hospital. There’s not a specialist burns department in every hospital. It’s in the nature of things that not all practices have everything.”

Peter passes my enquiry onto Andy Wray, General Manager for Specialist Services. He says something similar. “Services have to be commissioned by the CCG,” he says. “At this moment, the CCG doesn’t commission Devon Partnership Trust  to provide a designated community eating disorder service.”

“It really is a postcode lottery,” confirms Kathy’s colleague Jacqui Mann. Jacqui’s 38 years of NHS experience mean she’s pretty clued-up on how funding is allocated. “Every day, CCGs have to make decisions about where to place their money,” she explains. The trouble is, there’s a limited amount to go around. Rightly or wrongly, New Devon’s limited pot hasn’t been used to fund specialist outpatient eating disorder services – and things “will remain this way until someone at a clinical commissioning level decides services in this area fall short,” Jacqui explains.

So, that’s the situation. The NHS can’t do everything – and here in Exeter, outpatient eating disorder services have taken the hit. Unfortunately, this leaves many vulnerable students in a difficult position. Devon Partnership NHS Trust is currently in discussion with New Devon CCG about implementing some kind of community eating disorder service, Wray tells me – yet even if the CCG does decide this is a priority, nothing will happen until 2018 at the earliest. “We can’t deliver anything without it being commissioned,” Wray tells me.

The University tells me Mark Sawyer is also in discussions with the NHS about services for students – and is due to meet the Mental Health Commissioner for the Devon Partnership Trust. “We are very interested to explore how we can work together to improve the care for students with significant health issues, including those with eating disorders,” he says.

So what have I learned from all of this? Well, a couple of things, at least.

The first: our Student Health Centre is an unbelievable blessing. From niggling worries to full-blown crises, the doctors and nurses there will do their utmost to keep you safe and healthy. It’s always worth a visit. And the second? People will do incredibly brave things when they see a worthy cause. Jennifer and Charlotte are just two of the many students I know fighting for change in Exeter. Take Exeter Student Minds’ new peer support group. Set up by former Mind Your Head president Leah Fuller, it’s set to receive £6,600 from the University’s Annual Fund over the next three years to train students in supporting others with eating disorders.

From students bravely sharing their experiences and helping others, to doctors, nurses and other professionals going above and beyond, I’d like to think that anyone struggling with an eating disorder in Exeter could find care and support somewhere. Is it enough? No, not for everybody. But the fight for better eating disorder services in Exeter is far from over.

*name changed to protect identity

If you have been affected by this story, or have concerns about your own or somebody else’s wellbeing, the following services are available:

Reed Mews Wellbeing Centre
01392 724381
Student Health Centre
01392 676606
Exeter Nightline
01392 724000
B-eat
0345 634 1414
b-eat.co.uk

The University also recommends online self-care package SilverCloud. For more info visit http://www.exeter.ac.uk/wellbeing/selfhelp/online-therapy/silvercloud/

Exeter Student Minds’ Eating Disorder Support Project

Once launched, this new group will offer peer support and guidance for students struggling with eating disorders. “As there is such a huge gap in the market, I thought creating this group would at least provide some sort of support for students who are struggling right now,” says project founder Leah Fuller. “It is not meant to be a complete treatment option, but can support students in an everyday way, help pinpoint services, what options are available to them, and be there whilst they are accessing  treatment, as we know this can take time.”

“Wellbeing services is really pleased to be supporting the Student Minds Peer Support group initiative,” adds Mark Sawyer. “Earlier this month we met with the Guild Advice Unit staff to discuss how we can support peer facilitators and group participants once the group is up and running.” For more information, search ‘Exeter Student Minds’ on Facebook or email exeter@studentminds.org.uk

>>View original Exeposé feature>>
>>View Issue 662 at issuu.com>>

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s