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Following the tragic and untimely death of Nikki Grahame, Kerrie Jones, CEO & Founder, spoke with Naga Munchetty from BBC Radio 5 Live about the impact of lockdown on eating disorders, and how to support loved ones who are struggling.

The Orri community was and still is deeply saddened to hear about the untimely death of Nikki Grahame. Our thoughts are with her family and friends at this most difficult time.

Access to treatment must be made available to all people who need it regardless of eating disorder diagnosis or BMI, and this must be made available when it’s needed and in a timely manner.

Sadly, Nikki represents countless people who have struggles to access support, and whose mental health has spiralled during the pandemic.

Anorexia has the highest morality rate of *all* psychiatric illnesses, yet too often people are left to fend for themselves facing innumerable barriers in accessing support they so urgently need and deserve.

Deaths from Eating Disorders are *preventable*, and we know that with the right treatment, recovery is possible and sustainable.

No one should be dying of an eating disorder in 2021. We have to systematically change how we approach diagnosis, assessment and treatment to ensure no more lives are lost.

Questions, by Naga. Answers, from Kerrie.

Are you receiving more [eating disorder] enquiries during lockdown?

We are yes, it’s interesting listening to your previous caller…certainly the data that was released back in February suggested a 128% increase in the number of young people waiting for routine treatment compared to last year…certainly, our own experience has seen that with younger people and older people.

“…certainly the data that was recently released back in February suggested 128% increase in the number of young people waiting for routine treatment compared to last year.”

Has there been an increase in a particular type of eating disorder?

We’ve certainly seen a lot of first presentations arriving in our service. We’ve also seen a lot of people finding themselves having a relapse…talking to some of the clients who are here with us today – they were sharing that for them, so many of those normal every-day experiences just stopped so abruptly, as they did for all of us, but particularly for those who were already in recovery or working to get into recovery, those were the sort of things they held onto, to keep themselves safe.

So, to suddenly not be able to get out for that walk, meet that friend, go to the cinema, whatever it might be, is really destabilising and very frightening. The mother you were just speaking to (Amy) indicated a lot of treatment settings very suddenly had to change the way they delivered their treatment; sometimes stopping the treatment and sometimes being able to organise a different way to access treatment.

That is very difficult for somebody who is either at the start of an illness or perhaps more within their illness to really find themselves having to make a change very quickly.

Was there a particular rise in restrictive food intake disorders?

I would say we have seen a rise across the piece. Certainly, we have seen a lot of people with restrictive disorders actually becoming more acute, becoming more unwell…again, your last called described it very well – the access to your GP, the first port of call for a lot of people in those situations was very interrupted. We’ve seen it across the piece – whether it’s mental health or physical health, people not reaching out for that support. We’ve also seen a real increase in the number of people presenting with Binge Eating Disorder. It’s an eating disorder that we speak generally less about but we certainly have seen people reaching for food for comfort and finding themselves being caught up in those very negative and difficult cycles around eating as well.

What kind of treatment do you offer now and what have you been able to offer during lockdown?

Like a lot of services, we were presented with the same challenge back March 23rd last year, and so we very quickly had to close. We were in the very fortunate position of having already started to develop an online eating disorder programme, so we very quickly set up our day care service online.

We work very much with people who perhaps have found individual therapy on a weekly basis isn’t quite enough but they really don’t need to be in hospital, or perhaps they’ve had an inpatient stay and they’re stepping out of that, and they come and work without team on all different aspects of their eating disorder – whether it’s needing more talk-based therapies, support at the table, helping to deal with meal processing and of course managing to deal with the physical implications of their eating disorder.

So, it’s a real kind of wrap-around approach that we offer.

Have gyms closing…for people who have been balancing (exercising/food) has that been a factor?

Exercise is always a very delicate area on recovery. We have to do a lot of exploration to understand the role of exercise in somebody’s life and significantly in their eating disorder. For some people, the use of the gym can become a healthy factor, a stabilising factor, and I’m not familiar with Nikki’s case directly, so it can be a place of community, a place of support, and it can be something that somebody feels if I am doing some activity that I can support myself with eating. It can be quite a complex, negative process as well, so we have to be really mindful about what’s going on for somebody in that relationship. Certainly, we would do lots of exploration around that in recovery.

“Exercise is always a very delicate area on recovery. We have to do a lot of exploration to understand the role of exercise in somebody’s life and significantly in their eating disorder.”

Gemma Oaten (Nikki’s friend) brought up that Nikki’s death could be triggering, for either those who are suffering with eating disorders or those who are concerned about those with disorders. What’s your view on that and how would you advise someone to acknowledge that and cope with that?

I think fear is around for everybody when an eating disorder is present, whether it’s the person who’s suffering or the people who love the person who is suffering. I would echo that this is a very triggering time for people. I would also echo Gemma’s point that, for the majority of people who find themselves with an eating disorder, they will recover. That is such an important message of hope that we keep out there; that if people can access treatment and support, they can recover.

“…for the majority of people who find themselves with an eating disorder, they will recover. That is such an important message of hope that we keep out there; that if people can access treatment and support, they can recover.”

I think it’s a really important question that you ask there, if you’re worried about somebody what can you do? Because, the likelihood is that initially you will be met with some resistance and denial, and so, one of the things that we recommend is trying not to have those conversations in the heat of the moment – at the table when somebody’s refusing the meal or perhaps whether they’re engaged in a behaviour, whether it’s physical or an eating disorder behaviour that you think, “oh this is driving me to distraction, I need to say something”…really try to take moment and pause. Set a time, try and explain that you’re not angry, that you just want the best for them, that you’re genuinely worried about them. One of the things we say here is, ‘say what you see’…noticing, ‘I have noticed that you’re struggling to eat your meals/you are not completing your meals…’

On this, one thing that Gemma brought up was how to talk to someone you may be concerned about…the point Gemma brought up was to not address the eating…more to address the emotional wellbeing…to avoid them feeling stigmatised to the eating disorder. What would you say to that?

I’d say it’s about knowing the person you’re talking to, and sometimes it depends on how old the person is as well. Obviously, it’s going to adjust and it depends on who you are (there are loads of factors) – if you’re mum or you’re a best friend, the way that you will do that will be quite different. So, yes, saying, ‘I am noticing’ whatever it is you are noticing / whatever has caused you to have this conversation, but the focus, you know, eating disorders are not about the food, so how do you talk to somebody in a way that really speaks to them? ‘I’m worried about you’; ‘you don’t seem yourself recently’; ‘you’ve been quite withdrawn’…again, say what you see but really come from that place of concern and consideration.

It was a privilege for Kerrie Jones at Orri to speak with Naga Munchetty on BBC Five Live and we thank them for the opportunity to have a much needed conversation on eating disorders. Listen to the full interview, here.

For more information on Anorexia Nervosa, click here.

For more information on treatment at Orri, click here.

Do you have any questions? Get in touch with us!