NSFT Community Eating Disorder Service (CEDS) Suffolk

I was concerned about my child so spoke to our doctor who saw them and weighed them. I then heard nothing and was led to believe there was no immediate cause for concern. 10 days later late on an afternoon I was contacted by the service to say I needed to rush my child in to be seen as they were so unwell, with staff implying that they could die. I couldn't understand the urgency but was made to feel there was no choice but to go in. When we arrived it quickly became obvious that they had the wrong information and were dismissive of my concerns they were basing their decisions on wrong information. My child then had to be weighed in front of staff further raising their anxiety. I never got an apology or an explanation for the mistake.

A brilliant service for a teenager, very supportive and great that appointments were available locally too.

In order to receive treatment for anorexia you have to ensure that you have lost enough weight or services won’t listen to you. They brush you off like nothing matters, to the point where you feel like there is no point in trying to get better because they say you’re not ill enough. It disgusting that those with severe mental illnesses are treated based on their physical appearance. I’ve tried and tried to get help and been failed on many occasions

Our GP has been amazing but with in the Eating Disorders Team we've never even been given a name. The nurse we've seen has been amazing but it is difficult to understand the emails and it would be great if information was bullet pointed and if we could have information detailing the process and next steps. It doesn't appear that staff are overly skilled when communicating with young people.

I have seen the criteria shared with GP referrers and as I dont meet it there is no point in going through the referral process. Being rejected for support after asking for it is just another thing I cannot cope with when I know it boils down to my body size. It's a cruel reality that to recover from this I need to let go of BMI and weight yet the very service that I need uses it as a core measure of entitlement. It is not conducive to recovery to work in this way and I am yet to believe it is cost effective either.

I refuse to play into what my ED thoughts already believe is true; you can live when you are small enough to deserve it. I am in no mans land where I am not well enough to function and not thin enough to deserve support. I wonder how long this can go on for and I am not the only one in this situation.

Despite Beat telling me that I am seriously ill and being diagnosed with Bulimia Nervosa, Depression, Anxiety and OCD I do not fit the criterion for any services offered by NSFT.

I have been assessed by Wellbeing who don't treat eating disorders and my questionnaire scores were too high for their service for my other mental health problems. I was also referred to the IDT in crisis when I was suicidal and was told that I was not high enough risk and that I was too chronic and untreatable for a service despite being in recovery for 8 years prior to my relapse nearly 2 years ago.

I have only once in over 20 years had a CPN briefly so have never really fitted criterion for any services in this area. I will never fit the criteria for the eating disorder service in Suffolk as my diagnosis means that my BMI will never be low enough. I have friends who have accessed it and funding means that it is purely a service to fatten people up and as soon as a target BMI is reached they are discharged with no follow up which then just leads to relapse.

My only saviour has been the Eating Disorder Recovery Group run by Suffolk Mind but now that is at risk of losing its funding and our extra funding to help us through the covid period ended some time ago so our first week without a group was eating disorder awareness week. It was so good to be able to meet weekly and now we're back to fortnightly on zoom.

Does Suffolk want more deaths from eating disorders before they are prepared to address this unmet need? If I hadn't have been able to afford private treatment in the past I would be dead now and being self employed covid has meant that this is no longer an option so if it hadn't been for charities it is highly probable that I would no longer be here. I deserve an NHS service as do other people who suffer from eating disorders in Suffolk.

Spoke to Ipswich IDT and was diagnosed with binge eating disorder but that my BMI wasn't big enough to or small enough to see the eating disorder team, and that in any case, there is no service or help for adults with binge eating disorder in my area of Suffolk - despite the youth team having this support for binge eating.

Why do you cover all the other eating disorders but not binge eating disorder? Surely it wouldn't cost much to add this help?

All I can say is thank god for Suffolk minds eating recovery group or else I wouldn't probably be here. This is a peer support group and we chat with people with all eating disorders no problem. We do a bit of life skills and just chat. But this is not treatment and shouldn't be viewed as such.

The IDT signposted me to talk to BEAT but they couldn't really advise except refer me to NICE guidelines for binge eating disorder. Which essentially says get help as soon as you can. CBT can be beneficial but you need the help of a professional to help get to the cause of the behaviors and use CBT. This is something the IDT refused to help me with.

So they've given me a label but told me they can't and won't help me with it. I can't imagine a more cruel situation I could be in with this. Its absurd and devastating and my mental health is in decline because of the mental health team who ironically say their number one thing is to do no harm.

I guess once I'm at death's door or my BMI is big enough for them then they might intervene but seems like the logical solution of early intervention is going to ever happen here.

When I was at a very low bmi I received their service but now I am no longer at that threshold I can’t get any help. The only solace I’ve found is mind ED group who now have also struggled to get funding.

My anorexia is worsening and yet I can’t get help until I’m nearer death bmi wise. What about my suicidal ideation? It would seem the service doesn’t care unless 1. You Want help and 2. Are under a very low bmi. The Conundrum that these two things often are not compatible because at a low weight the ED takes over and sufferers often don’t want help. Surely the Eating Disoder team should know this better than anyone?!

It is an underfunded service full of bureaucracy and people not listening to the needs of suffers of EDs. The site looks like a mess, has weeds outside the reception, and is in need of brightening up. Waiting time is often longer than the life span of those who are struggling with suicidal thoughts. Care from the service is ok but that’s only if you can access the service. Staff are friendly but do not base their assessments on how you think and feel but instead base it on bmi (need retraining).