Our experience of Oreo was similar to that of @jojo28 .
Our child was 16, and we were finding it hard to find any care for someone under the age of 18. However; Orri offered this service, so we signed up.
At first we found them very professional, but that soon changed. They weren’t able to grasp the difference between a 16 year old and an adult. At 16, your capacity to consent to medical treatment is presumed. However; despite being able to consent, a 16 year old is still very young and reliant on support from parents, and is likely to need parental support when dealing with complex medical matters. Oreo staff did not understand this and treated our child as a fully formed adult from the start, excluding us from any role in his care. This is very different from the approach taken by CAMHS at this age - CAMHS get the balance right by involving parents in the assessment process and bringing parents into consultations towards the end, having given the 16 year anniversary ld the chance to have a private consultation and pre-agree what information can be disclosed to parents.
Orri did not involve us in the assessment process at all, which meant they failed to elicit important information because our child did not realise it was relevant and should be disclosed. For example, they did not find out our child had an EHCP and was at a SEN school, with professionals already involved with whom they needed to communicate. They did not realise our child was already having 1:1 therapy, and so our child ended up having two 1:1 therapy sessions in a week, which was too much, and our child started to feel very depressed and pathologised.
We said from the outset that therapy would need to be online because our child was unable to commute due to their SEN. However; when our child came out of their assessment session, we were told (rather than asked) that the therapy would be face-to- face. We explained this would not be possible, because our child ‘said something’ in the assessment which meant the sessions needed to be face-to-face. This closed comment basically shut down any further conversation about it, because we could not ask for further explanation without violating our son’s privacy. We went home wondering exactly what had been said to necessitate this?
This was the first of many closed statements that dismissed parental concerns out of hand. Having previously had a social services child in need plan (not unusual for SEN families - there are two types of intervention - child in need and child at risk, and this was a child in need plan), I found the behaviour mirrored that of domineering social workers, which I found very distressing.
In order to minimise the chance of non-attendance, we made certain conditions to him attending face-to-face -
travel straight from college and no rush hour travelling. This was agreed, yet when we were offered time slots, they were unable to offer anything that fit this criteria.
We did our best to travel train our child, but ultimately our prediction was correct - our child had an Autistic meltdown because they couldn’t face the thought of coming to their appointment to be weighed, and so I emailed Oreo to say that from now on, all sessions needed to be online.
. Is it really a surprise that a vulnerable 16 year old might find travelling to a weigh-in distressing and may be unable to do so without their parents on hand to provide support? In my opinion it isn’t, but evidently it was to Oreo, who created huge pressure to resume the F2F sessions. This pressure included the counsellor telling me to instruct their home-to-school transport taxi to bring him to Orri, then refusing to believe me when I said it was not possible. I then had another Orri staff member create pressure to resume face to face in the near future, despite me having explained that the risks associated with an Autistic meltdown on public transport were too high.
They even had a conversation with our child’s school where they suggested that a good developmental target for him to learn to travel to Orri independently. The poor kid was having a difficult enough time dealing with the ED, the last thing he needed was further pressure to learn how to travel there independently - there are easier ways to travel train!
Despite the fact that the failure of the F2F sessions was entirely Orri’s fault because they were the ones who insisted upon them, they did not offer to refund us for the £90 nurse weigh-in sessions that would no longer be happening.
The first line treatment for ED is family therapy; however they were very shifty when asked why we hadn’t been offered this - the reasons kept changing and didn’t make sense, and I felt they had an agenda of keeping our child’s parents out of the therapy sessions.
They did not send me a copy of our child's diet plan, and when I emailed asking to discuss it, they ignored me. Exactly who did they think was food shopping and cooking for this 16 year old who still lived at home? Our child later explained that they had asked permission to send the eating plan, but they did so in a conversation where he was asked too many questions at once, and couldn’t process the information to come up with an answer. A sensible dietitian would have come back to this and explained why it would be helpful for their parents to discuss the plan, agreeing boundaries around the information to be shared, but no such attempt was made.
The therapist who was counselling our child was the worst of the lot. She was vile - it was very clear we were being judged by her, and we didn’t understand why. At one point I said to her - ‘I feel you are treating me as though I am a safeguarding risk to my child! and rather than seek to address the communication problem, she immediately shut down the conversation. I later found out that, were we ever to progress to family therapy, this would be the person facilitating it. I informed Oreo that there wasn’t a snowballs chance in hell that I would be sitting down for family therapy with that vile woman.
By far the worst part of the whole business was their abuse of my personal information. There were two further diagnostic appointments, one with a psychologist and one with a psychiatrist. When our child wasn’t present, I confided in the psychologist that the diagnosis of Anorexia had made me very low in mood and I sometimes had thoughts of not wanting to be here. Unbeknownst to me, this informal conversation was documented in my child’s notes.
Our child then had the psychiatrist appointment, and a clinic letter was emailed out to us and the GP. Now, our child doesn’t bother checking their emails (something else they weren’t aware of because they failed to include parents in the assessment) and after I’d reminded our child to read it several times, I then asked if they were happy for me to read it on their behalf. The answer was yes, so I opened the email, and to my horror, the psychiatrist had listed as an ‘aetiological factor’ (causative factor) for our child’s ED ‘mother has been suicidal in the past’.
As You can imagine, I was absolutely horrified - what mother would want their 16 year old to read that??!!? It was totally inappropriate to include it, because my permission hadn’t been asked (so, it was a data breach) and furthermore, documenting informal comments is no substitute for taking a proper familial medical history, which they could have asked us for at any time, but chose not to.
I raised a complaint about this, yet despite conceding it was a data breach, they didn’t issue a corrected letter and I had to put in a second complaint in order to secure that.
This episode severely damaged our relationship with the Orri team, and the persistent micro-aggressions we experienced meant the relationship was unable to recover. We had a meeting where I explained the importance of communicating with us so we could support our child’s recovery, and they agreed to given us regular written updates that were pre-agreed with our child, but this never happened. At one stage I drafted in our schools SENCO, to explain why, as a 16 year old with SEN, our child was more vulnerable than they realised and more parental involvement was necessary, yet still nothing changed.
The final straw was when our child finally told us what is was that they’d said the necessitated the F2F sessions - they were questioning their gender identity , and had told Orri that they were concerned about how I’d react. Suddenly it all made sense - behaving like social workers, treating us with suspicion, the feeling we were being judged and treated as though we were a safeguarding risk, the refusal to offer family therapy - this was all being done because they take a gender-affirming approach and judge anyone they perceived as having a different view. At this point I was finished - I did not trust these people to behave in a way that would support family relationships; so I cancelled the remainder of the package and wrote them a highly litigious letter, which resulted in us securing a full refund,, which just shows you they knew they had really ballsed things up, because their refund policy is as tight as a ducks arse under water.
We transferred our child’s care to the Family treatment Service in Wimbledon, where we’ve had a completely different experience. We were put straight into family therapy, it has been incredibly helpful, and the therapist is very affirming of our family, saying we are among his favourite clients because the communication between us parents and our children is excellent and the love and appreciation we all have for each other is evident. The therapist also says that my husband and I provide a very stable base that our children benefit greatly from.
Gender rarely comes up in conversation - the only time it has come up was at my instigation - and our child told us that they were happy working through things slowly with their school counsellor, and didn’t feel the need to make any changes at this time.
I’m pleased to report that with the Family Treatment Centre’s approach, our child is now getting better, I actually look forward to our family therapy sessions - they are helpful in so many ways, you have the safe space to discuss things that you would otherwise have difficulty raising because should your child react badly you would’t know what to say next. Everyone considers it their safe space where they can be a braver than usual when they communicate.
Anyway, my view on Orri is that their service is not suitable for clients who require family support to access therapy, because they take patient confidentiality to an extreme and will not provide necessary feedback that allows you to support your child.
To me this seems like a major failing because surely the majority of ED patients require an enhanced level of parental support; hence why the gold standard to ED treatment is family therapy, which facilitates the delivery of appropriate familial support?
Their are ways me can strike a happy medium between confidentiality and providing enough information for a family to require practical support e.g. to inform travel planning or shopping for food (how you go about this is detailed in the National ED Guidance and also CQC information), but they do not seems to consider this necessary, relying upon the patient to share everything with you.
It is also necessary to share information because, when therapy is being paid for my parents, parents are entitled to be kept in the loop as much as is reasonable able possible so they have the assurance that the therapy is a good match for their child and this was money well spent. After 6 weeks in treatment we still hadn’t received any meaningful feedback, and I had no idea whether I had made the right choice for our child. If they are unwilling to provide regular feedback, then they shouldn’t be charging 4 figure non-refundable sums up front, OTs asking too much and is rather exploitative of vulnerable families.