In 2016, Hannah Butler was in her final year of university. An Exeposé Editor recently returned from her year abroad, she was on the cusp of top grades, a Masters degree, and high-flying journalistic ambitions. Yet, her time at Exeter had been marred by an eating disorder in her second year, for which she had found it almost “impossible” to get help.
“I couldn’t access the support I needed,” she reflects. “My doctor at the Student Health Centre was amazing, but they were limited in what they could do. They advised me to go through the NHS, with whom I had an initial telephone assessment before the Christmas holidays and got an appointment for 5 January, 2015. I clung onto this date during the Christmas break, thinking everything would start to get better after that. When I went to it, I found out it was actually just another assessment – and at the end, I was told I’d hear from them in around three weeks. That was when I hit crisis point, really: when you’re not coping mentally, getting from one hour to the next is hard so the idea of waiting another three weeks was horrific.”
Things only improved for Hannah when she found a private psychotherapist who could see her for bi-weekly sessions initially and once a week after that. “I’m so incredibly thankful that my parents were able to pay for my treatment,” she says. “If I’d had to rely on the NHS, I honestly don’t think I would have finished that year at university.”
“when you’re not coping mentally, getting from one hour to the next is hard so the idea of waiting another three weeks was horrific”
Motivated by her experiences, in her final year, Hannah decided to investigate the eating disorder services available in Devon. “I never thought one feature in the student newspaper would make a huge difference,” she admits. “I just saw my piece as adding one more voice to those saying something had to be done.”
The results of her investigation were alarming. Compiling conversations with student volunteers and medical professionals, local support initiatives were found to be in existence and even in development, but were severely impeded by lack of funding. “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,” Hannah wrote at the time. “Sounds like one big mess? That’s probably because it is.”
Two years on, we’re investigating again, this time to ask: how much has changed?
My first port of call is Amelie Sievers, Student Minds Coordinator, whose work with their Eating Difficulties Support Project is testament to the growing student-led support now available on campus. “The group was set up around two and a half years ago and I’ve been involved since the start,” Amelie explains. “It was an alumna who founded it, Leah Fuller, who ran for a Sabb position and included this idea in her manifesto. She didn’t get elected in, but she thought it was so important that she still did it, which is amazing.
“We’ve done quite a lot over the years. In the beginning, we had to find our feet, see where we fitted in, [find out] what there was in Exeter, which wasn’t much. But now we’re really well-connected with the Wellbeing Centre and the Student’s Guild who are giving us a lot of support both in terms of advertising and also in regard to input with the group. We’ve appointed new facilitators which is really exciting, and attendance has been a lot more consistent.”
The beginning of 2018 saw the group’s initiation of a one-on-one support project in affiliation with the Wellbeing Centre. Nina Leonard, a wellbeing consultant there, tells me that such an initiative acts as a “short-term flexible intervention”.
“Some sessions may consist of exploring what maintains eating disorders; helpful behaviour changes; self-help strategies and signposting to the appropriate treatment options within the NHS. We are also able to offer some follow up appointments to students whose difficulties are mild to moderate and who can, therefore, benefit from this type of intervention,” she explains. “This is an evolving intervention, regularly discussed and reviewed within the service and open to feedback and suggestions from students. We endeavour to be as flexible as possible, tailoring interventions around students’ individual needs.”
Ana Silva, President of Exeter Beats Eating Disorders Society (EBEDS), also cites advancements within her group. As University representatives of the charity Beat, EBEDS has been active since 2016, helping to spread awareness of the organisation’s online support services available to those with eating disorders. However, they have only become a society this year: a status that Ana hopes will “help put a name for ourselves out there”.
“A lot of the things we’ve done in the past as an individual group has been fundraising and raising awareness,” she explains. “I think that that’s great and we still plan to do that throughout the rest of the year. However, I don’t think we’ve ever tackled the medical side of things before, working with other University societies to change their perceptions of what an eating disorder actually is so that they can understand why we are so passionate about it.”
Informed by this, a principal campaign EBEDS has headed this year is to increase the number of hours Exeter medical students receive learning about eating disorders. “In their whole five or six years of undergraduate study, [medical students] get 1.8 hours teaching time on eating disorders,” sighs Ana. “It’s shocking because my first port of call when I had an eating disorder was my GP. To have 1.8 hours of learning in that whole six years shows, from my experience with doctors, that they don’t know anything about it. That’s probably why [support] is so limited because it’s a fundamental problem underneath.”
Her answer is a concerning one, and encourages me to ask to what extent she feels wider support is still “limited”.
“I think that there are still probably quite a lot of improvements to be made,” Ana laments. “People do come to us thinking that we are in a support group but we’re not trained, we’re just students. Obviously, some of us have had experiences with eating disorders and I guess we offer that personal insight into it. However, I do think that what some of the members have expressed has reflected that the support in Devon isn’t quite sufficient.”
Amelie’s answer is a similar one: “To see people coming back is really nice. That’s a word I use loosely though because obviously it’s really sad that people feel they have to rely on a group like us, that there aren’t more specialist services for them. For me, however, it’s nice to know that we are able to offer a supportive environment. To meet people at different stages of recovery can help a lot in itself. That’s better than suffering alone.”
“now we’re really well-connected with the Wellbeing Centre and the Student’s Guild who are giving us a lot of support”
Although the work of these two groups is clearly suggestive of available support on campus, their concerns – like Hannah’s two years ago – continue to hint at underlying medical limitations within the region. Here at the University, the Head of Wellbeing Services, Mark Sawyer stresses to me that the Wellbeing Centre is there to provide “initial support, not specialist treatment”. “Diagnosed eating disorders are usually best treated through multi-disciplinary medical teams, and often within in-patient settings or closely monitored community programme,” he argues. “It is rarely appropriate for university services to offer such treatments ‘in-house’.”
“That said, students with eating disorder diagnoses may be offered mental health mentoring, funded through the Disabled Students’ Allowance. The Wellbeing Service provides this regular support, which helps students to manage their mental health difficulties whilst they study. It normally takes place weekly for the duration of their programme of study.”
For a university student then, what help can be garnered long-term? I go to speak to Dr Neumegen at the Student Health Centre who, I am informed, is the practitioner there with the most experience in this area.
“As we stand at the moment, not a lot has changed,” she warns. “Where we are and where we have been historically is that we provide the vast majority of the physical health monitoring here at the Student Health Centre. We then historically referred those we were worried about through to general mental health services.
“They would have a general assessment and if they met certain criteria of severity, they would then be referred for assessment with what’s known as the Community Eating Disorder Service (CEDS), which hasn’t been around that long. Before that there was absolutely nothing. Their role has really been assessment. So, the patient will do an assessment with nurses, they get specialist advice from a psychiatrist, they will come up with a plan of what a student patient needs, and then the delivery of any real support comes from a general mental health team, not specialists.
“So quite a lot of the time people would deteriorate and then the only real option was either if they were severe enough to be admitted to an eating disorder unit, or if they interrupted and returned home to access support.”
The situation she depicts is a dire one, yet she assures me that developments are underway within the University, most notably with that of the Community Mental Health Team. “At the moment we’ve got Wonford House which is where the secondary care mental health service is based, but there is going to be a team of three mental health practitioners who will be based on campus,” she says. “So rather than everybody having to go over there, there will be more assessment and hopefully support happening on campus and, more importantly, more close working between Wellbeing, us, and secondary care.”
It is consoling to hear of improvements being made, one reflected in the increased funding Dr Neumegen says has been injected into the eating disorder services within the region. Although hopeful, however, she is reluctant to make any promises: “There will be an expansion but as of yet we don’t really know what that will mean in practice for the services for students. So, there are definitely things happening, services have recognised that there needs to be greater provision, but we don’t quite know how that will reflect on the ground.”
developments are underway within the University, most notably with that of the Community Mental Health Team
To the inexpert eye however, the question is a simple one: where does the external funding come from? For eating disorder services in Devon, the majority comes through the NEW Devon CCG (North, East and Western Devon Clinical Commissioning Group): the NHS body responsible for buying and commissioning local health services. Although more recent statistics are unavailable, CCG spending on specialist eating disorder support between January and September 2018 more than tripled in comparison with the same period in 2015. This comes in addition to funds allocated to Devon Partnership Trust (DPT) – the local NHS body offering specialist mental health and learning disability services – whose remit also encompasses eating disorders.
Fiscally speaking, the numbers are promising. Yet where is much of this money being spent? Undoubtedly, one of the larger projects in development is that of the CEDS mentioned by Dr Neumegen: a pilot initiative established two and a half years ago.
The purpose of the project, says its Project Manager, James O’Reilly, is “to undertake assessments and provide consultation and advice on the outcome of the assessments that we carry out”.
“The outcome from the pilot was that we were able to gather a considerable amount of data and the CCG decided that they would like to provide DPT with a formal contract to provide services to people with eating disorders within the Devon area,” he explains. “So, we have gone from a pilot initiative which consisted of 2.3 whole time equivalents in the current set up [a term referring to the number of staff working in a service, derived at from dividing the number of hours people are working by the total hours of the NHS working week]. So, we have gone from a whole time equivalent of 2.3 staff in the current set up to 11.5 staff.”
Rachel Webb, the Services Manager within DPT with responsibility for eating disorder services, gender, autism and ADHD, confirms that the project is still an ongoing “process”. “The results from the pilot and the case that went to the CCG came in in summer. We’re still in the process of recruiting to those [11.5] roles so we can build a fully-formed multi-disciplinary eating disorder service.”
The service is due to be launched across Devon next month. According to a spokesperson for NEW Devon CCG: “[The service] will provide a dedicated service to people with mild to moderate eating disorders in a community setting and will encompass psychological support, diet and nutrition advice as well as family interventions to support people with their recovery. Students who need to access the service can do so via GP practices in Devon.”
Indeed, James is hopeful that the new service will alleviate some of the limitations that formerly impeded sufferers in Exeter.
“The limitations up to now have always been in relation to the degree of responses that people can get within the community: the type of assessment and the range of psychological interventions people can receive,” he says. “With the new service, because of the make-up of the new team which will include a psychiatrist, psychologists, dieticians, specialist nurses and assistant practitioners, there will be a whole range of interventions that will be provided. When the new service is fully up and running, it’ll look so different to what is currently provided.”
Currently provided, the main resource outside of the University has been the Haldon Unit at Wonford House. The service provides for up to 20 patients including 12 inpatient beds and up to eight day patients. As Rachel puts it: “If people require an inpatient stay, they’re really very poorly. That’s often about medical stabilisation with regards to their physical health status and then working on from there, looking towards change and recovery.”
“The new service will be much more about greater work and sharing knowledge,” she says. “It will have a training and advice function to support groups or other professionals or medication providers. It’s about working collaboratively across all groups and that would include peer support.”
Their responses are consoling, yet how effective is the new initiative in practice? The answer comes closer than I expect in the form of second-year student, Emma* who meets with me to speak about her experience. Emma was diagnosed with an eating disorder in her teenage years. Having received help through CAMHS (Child and Adolescent Mental Health Services) at home, she says she underestimated the impact coming to university would have on her.
“I’d always wanted to get better for university. It was like a motivation,” she remembers. “But it didn’t happen that way. [My first year] was quite a struggle because it was so many new things and I didn’t realise how much that would impact on my mental health. It brought a lot back to the surface and I was realising that I still needed help and I needed to continue that.”
Emma started with the Student Health Centre on campus, which she regards as “a blessing”. “It was really close to me, really accessible, and I could go there and just explain how everything was and they kind of continued my care plan from before.” From there, she went to Wonford House, where she received cognitive behavioural therapy (CBT) via CEDS. “At first, I was reluctant because I was quite sceptical,” she admits. “But when I actually got involved, it let me open up about how I was feeling. [CBT] took the emphasis away from the physical side of what an eating disorder is associated with and shifted emphasis onto changing the negative underlying thought patterns. Ultimately, tackling the ingrained thoughts and habits I had spent years with pulled me out of a dark time. I think that was probably the best thing I got from the eating disorder services.”
Clearly, developments are in progress, ones which – according to Emma’s testimony – hope to be hugely beneficial. Yet why has it taken until 2018/19 for these to be implemented?
“A crucial one around that is going to be funding. You have to have the funding in order to have the services in place,” asserts Rachel. “I appreciate that as a member of the public it does always feel like there’s a lag but that work has been ongoing through these last two years. These things take time to come onboard. There’s a huge need across a range of conditions, both physical and mental. There’s only so much money in the pot.
“As alone as you think you are, you’re not.”
“Then if we get funding and we get investment, the reality of recruitment is that there is always a lag in that. That’s the bit I think sometimes if you don’t work in it you don’t understand.”
As Hannah concluded in her original article: “The ﬁght for better eating disorder services in Exeter is far from over.” Two years later, so does the fight continue to wage, although increased funding and expanded services seem poised to transform local resources for sufferers.
In the meantime however, what advice can sufferers take? “As alone as you think you are, you’re not. Everyone who is in that situation is probably thinking the exact same thing as you,” says Ana. “Don’t be afraid to speak to someone; don’t be afraid to voice how you’re feeling and talk to people who understand because it will make you feel less alone.”
“My main advice would be to seek help,” agrees Amelie. “Being alone in it is so much more difficult, so the general advice is to go to your GP to get a diagnosis and advice on next steps to take.. Just know that you’re not alone, and there is hope. I think a lot of people lose that, but there is hope for recovery and a lot of people have recovered.”
* – Name changed for anonymity
The following websites offer advice to those who may be affected by the issues discussed in this piece: Devon Partnership Trust, Beat and Mind.
The following services are also available:
Exeter Student Health Centre (01392 676606), Reed Mews Wellbeing Centre (01392 724381) and Nightline (01392 724000).
The Student Minds Eating Difficulties Support Group meet on campus on Mondays at 7pm, in the DH2 Conference Room.