Orri - anyone with experience of them?

[explainthistomeplease]

DD 25 is thinking of using the people at Orri to help her with her stubborn ED. Any views is or experienced? Thanks

Hi - I’ve just signed up to mumsnet and read this thread as I was also looking at Orri - sounds very expensive. Having an extremely tough time with daughter and AN plus OCD. Feel helpless- complicated. Daughter has been an inpatient via NHS but I honestly think that’s damaged her even more. So sad.

DenimStork am so sorry you’re going through this too. We tried Orri for 6 weeks after Christmas. It didn’t work for us but I was really impressed by their approach- it surfaced a lot of isssues for us (including DDs long term manipulation of her weight so it transpired her BMI was lower than Orri’s threshold) which was hard at the time but probably necessary. She is now under adult psychiatric services. Orri was v expensive but supportive. However like a previous comment mentioned, there is a lot of group work and some of the other participants are very unhelpful/manipulative which was less helpful. Online BEAT is great - their Developing Dolphins course for carers is very well run. Also FEAST is an international support organisation for families that has a lot of online advice. Sending you strength. It’s so tough.

My dd starts with Orri this week. She found it herself and impressively her programme is being designed around her needs - online and 121 rather than group work. I am hopeful it will be right for her and will update here! it's so hard - my dd came home for 3 days only over her Easter hols and stayed at uni to work the rest of the time - she can't be out of her routine - we also didn't make her birthday trip to Paris - for the same reason. It's hard on everyone. Wishing you luck and strength! x

Thank you both for your support- I’m not great on this technology (tend to stay away) but I really appreciate your replies. My Easter break was pretty awful - lots of disregulated emotions from her which were in the extreme at times. I’ve signed up to Nexus to talk to someone (through BEAT) and will follow up on other suggestions. The NHS did have some online support for inpatient families which I tried but TBH it was rather heartbreaking. Thanking you again.

I hope things get better - i only came on here to see if anyone knew about Orri. But I am glad I did - it helps to kmow we aren't alone - and I also need to follow up
with Beat so thankyou for reminding me!

@DenimStork see if you can hook into Orri's group sessions with other parents online. It was really helpful to us to know there were other perfectly sane people out there going through the same things. It's done through Zoom. Very helpful. We've taken a break from it but may return to it. Also they offer family therapy between parents and carers and the patient.Tho I must say I didnt find that very helpful

I have found Orri much more helpful than many other interventions but not a miracle for my eating disorder. HOWEVER I am in my 40s and have had an ED since my teens so my expectations were realistic. The really good elements of Orri are that it is

• available (unlike most nhs options for most people)
• kind
• personalised
• flexible

Big issue is that the cost means most people can only do 6-12 weeks when objectively most eating disorder treatment needs much longer than that.

I spoke with Orri yesterday and they seemed lovely- good listeners and have sent me some info to look at and pricing. Extremely expensive but I’ve been expecting that. I agree 6-12 weeks is probably not enough time for some people. It upsets me that some companies make a huge amount of money off very sick people, and that sadly our NHS in my view feels pretty broken especially in relation to mental health.

In an earlier post I contacted Nexus via BEAT to talk to someone for carer support and sadly they wrote back yesterday to say:

Unfortunately, due to the current high demand for our services, and limited funding in your area, we are currently unable to proceed with your referral. I'm sorry for this disappointing outcome. if, and when we receive more funding, we will be in touch.

Wishing everyone who has been on this thread to stay positive and hopeful (including myself!).

I’m still looking into it. The cost of course is as you all say is through the roof!!
i know from speaking to friends often in inpatient hospital treatment it gets very competitive / nature of the illness but throwing a whole lot of people with eating disorders in a room can be difficult! Would you say this is similar at orri? The hiding food etc etc or a more ‘adult’ / less playing tricks and kidding staff environment? (Sorry I don’t know how to word this correctly!)
im worried to throw my DD into this in case it causes more problems

@DenimStork and @afewtoomanychoices My DD is still undr Orri's care, so let me address a couple of points purely from a personal pov. Twelve weeks was never going to be enough for DD. She has two full time 6 week blocks and now goes in twice a week, and i can't see that changing or the foreseeable. She is combining taht with working part time. Her employers have been great letting her reduce hours (and pay).
As for the atmosphere, you're right @afewtoomanychoices - there can be poor behavior from some patients. DD often texts 'it's all kicking off at Orri' - as some girls - usually younger (DD is 26), and often those who have led quite privileged lives. There might be 'hunger strikes' or cliques forming. But DD says staff do a good job of separating girls whose behaviour is like that. And for balance there are also mature people, who are determined to get better. DD tends to stick with the older crowd because i suppose that's what she is.My DH worries a lot about learned behaviours spreading. But I don;t think this has happened for DD.
Dd didnt go to a fee paying school, but I liken it to going to an expensive private school in terms of cost comparison

Could anyone give an approximate cost for a 6 week online course? They don’t give prices on the website. Thank you.

I can't, but I have spoken to DD about online, and she says for her at least it wouldn't be as effective. In the early days it's about eating together and the support that brings. But I fear my DD had quite an entrenched ED. Everyone is different! Best have a chat with Orri

Thanks @explainthistomeplease - we’re not in the UK but my person has had in patient treatment before and it was a disaster. I don’t think being with others works for them at all because of the competitiveness and also the quite harsh approach that was taken by that service. You’re right-I probably need to speak to them directly.

The cost depends very much on what you do and how much you engage. I think it was about £300 per half day online before extra sessions (e.g. assessment, family therapy etc). V expensive but the quality of support was high. My person found online helpful and it allowed them to avoid getting caught up in some other people’s dramas - which would have been harder to avoid if in person. They valued being in the comfort of their own room too. But Orri didn’t work for us - our person was too ill to benefit properly - so we only did 6 weeks. Good luck - this is an awful illness and it rages its toll on everyone 😢

Well, I spoke with Orri and was given prices as per below: In Person In Person - Full Day Treatment is based on a minimum average of 3 days attendance per week. Daily fee - £599

Online Online – Full Day Online – Part Day (Morning or Afternoon) Treatment is based on a minimum average of 3 part or full days attendance per week. Daily fee -£499 Part day - £326

Additional Support Per week online - £299 oer week in person - £420

There is more detail in the leaflet which outlines what you get for the money - but as you can see v expensive.

After looking into this my D is not ready to participate and I can’t force her , not to mention the cost but I hope to figure something out when she is more accepting of help so in the meantime just me supporting ( and GP monitoring) the latter being quite useless as mental health and ED is something they receive next to no training with. I think her stint in inpatient with the NHS was quite damaging psychologically- empathy was not present from staff who were v judgemental and frankly the experience was v frightening for her and us all.
i hope you’re all making positive progress your loved one.

Thanks all - that’s very helpful. The cost is eye watering. I think my person would have to be fully committed before I’d even think about it. They are functioning but the ED is always there in the background making their life very stressful. I feel desperately sad and worried for them but no intervention has worked in the past. Family based therapy and inpatient time was useless and probably did more damage than anything. Similarly to a poster above I found many of the so called clinicians involved cruel and punitive. Mindlessly following protocols instead of treating the person in front of them. No understanding of how tortured these poor people with EDs are. Thanks - it’s good to be aware of other kinder options.

Hi there. My daughter has just started with adult services after 2 years of intermittent FBT and 2 years of going it alone (ie. CAMHS unable to provide support) and feeling quite lost. Adult services are taking a completely different and much more compassionate approach. Clearly I’m not involved now but the therapist will speak with me and my DD is showing the first signs of being willing to engage. She is working through the MANTRA work book with her therapist - you can get it on Amazon so it might be worth looking at the approach. There are YouTube videos to support parents of adults with AN. Also look for Jenny Langley’s online sessions for parents and carers.

Hi! New on here. Thanks so much for this @explainthistomeplease. I will go visit them soon, if you have any further tips I'd greatly appreciate it. My daughter is 19 and not totally on board unfortunately...thanks!

@cbs1971 I would say your DD has to be 💯 behind treatment. My DD instigated it. But only after 7 years of being affected by her ED. And although she's discharged now (well, it works more like she's discharged herself!), there are still persistent and often serious issues. She felt tho that at least she was eating regularly, and had tools at hand.
So I would caution against hoping for miracles. Improvement yes, miracles no
X

Thank you so much @explainthistomeplease xx

M dd is a few weeks into online Orri and is finding it incredibly helpful. The therapists are really smart (so is dd!) and absolutely get her particular form of ED. I would say tho that motivation is key. It's intense - dd has around 3 x sessions a week - but she is committed. Early days but she looks and sounds better and is beginning to manage her triggers. Good luck - it's so distressing watching a dd self destruct. xxx

Thank you so much @Fuerte60 for the feedback. I am hopeful 🙏Will do an assessment with them this week. Thanks!

Hi,
This thread is a bit old, but I wanted to add my experience with Orri. My 21-year-old son has ARFID, and he asked us to help him get some treatment for it.
We were relieved that he had asked for help. When your child is an adult, it can be challenging to help them without coming off as pushy and patronising. We reached out to Orri and were impressed with their seeming transparency. The costs were expensive but clear. We had several phone calls with the team and were copied into emails to our son (who does not live with us). However, as soon as the money left our account, our communication stopped. We had no oversight over how the treatment was going; worse, we were not told when he was not attending the appointments, even though we had paid for them. I wrote and spoke to them, stressing that I respected my son's privacy but that it was only fair that I knew if he was engaging with the programme. I had a call with a member of his team who reassured me they would start to give me updates about his engagement. I have not had any correspondence from them since that call, except, of course, a further bill for payment of more sessions. Are those for sessions he missed and rebooked? I will never know.
So my warning is specific. If you are the parent paying for the treatment of your adult child - beware, you may be bitterly disappointed.

Thank you @jojo28 for your feedback. We just started with Orri and I do see how whilst the services and care they offer are solid and good, it is a business at the end of the day. Our DD is fighting us on all fronts, I'm not sure how successful her overall attendance will be in the end and I do wish for us paying parents there'd be better safeguard protections in place.
I hope your son is doing better!

Hi cbs1971,
I wish you and your daughter all the best with the treatment. Previous posts have been very positive from the patient's point of view.
I have written to Orri to express my dismay. I will let you know how it goes.
I am not sure about my son, as he currently refuses to talk about it. I have found parenting an adult child very tricky! Sometimes, I can't sleep because I worry about his well-being; other times, I accept that it is his life and that I have to have faith in him and my parenting and let him work things out. But it is agonising at times!😩