OCD treatment

[Rarewaxwing]

I'm going through a long battle to get my adult son the appropriate treatment for his severe OCD. We've just seen a specialist who recommended residential treatment at the Bethlem in London.

Does anyone have any experience with this hospital. Or other experience of what helped them or their child with OCD?

For context, my DS is autistic and had CBT with exposure therapy as a teenager. This was very successful. However, the Covid pandemic triggered his OCD again and it's proved impossible, so far, to get him the right treatment via the local mental health team. He can't study or work because of his condition.

I have experience of being referred to the NHS highly specialised services for OCD treatment, and have just started outpatient treatment at the Bethlem's sister clinic. They warned me when they assessed me that I'd be better having treatment as an inpatient and unfortunately they are already indicating that they might be withdrawing the outpatient therapy as an option after just two sessions. They aren't talking about alternative treatment at the ADRU at the Bethlem though, but on the OCD ward at Springfield. The ADRU doesn't take people who need nursing care due to their OCD, which I seem to in their opinion (regarding eating and drinking, and washing).

If you've spoken to a specialist, do you mean privately? If they are also working at the Maudsley or any of the NHS specialist OCD places, then they obviously think the ADRU would be appropriate for your son, but if they have no connection to any of those services, and your son struggles with basic self care, I would look into Springfield as well, and the difference between the two.

I was referred to Springfield 6 years ago but ended up refusing to go, and went through the assessment for CADAT this time last year. All the NHS England-funded, Highly Specialised Services meet once a month to discuss all their referrals and jointly make decisions regarding funding for each patient, so even though I haven't been referred to the ADRU in particular, I can describe the process and different funding streams and I believe it would be the same as what your son would experience were he to be referred.

Obviously I can't tell you anything about what it's like in the residential unit or how good the therapy is, so sorry if that's what you really want to know. Have you ever asked on the OCD-UK forum? I know there's at least one quite regular poster on there who has had treatment at the Bethlem.

@flourella - thanks so much for taking the time to reply. And I'm so sorry you are also suffering from OCD. It's such a cruel and debilitating condition. It makes me so cross when people casually refer to being 'a bit OCD' because they like things tidy or something. My son's life has come to a standstill because of this awful affliction.

I booked an assessment, privately, for my son with a consultant psychiatrist at the Maudsley and Nightingale hospitals. I'm hoping his report will help persuade DS's mental health team to refer him for tertiary care.

The psychiatrist suggested Bethlem would be most suitable for DS. I have long thought DS needs residential care, so I wasn't surprised by this. Although, actually, DS does struggle with eating, drinking and washing because of his OCD, so maybe that needs more consideration. It might be that he wasn't clear about that in the assessment. So I'll look into Springfield as well.

Thanks for the tip about asking on the OCD-UK forum. I've used their website for information, but never been on their forum.

Did you find it difficult to get a referral via the highly specialised service (HSS)? My son's local mental health team initially refused to refer him for CBT, so I ended up pushing for a referral direct to CADAT, which was refused. After that, DS was given one round of CBT, but it wasn't enough. I know that HSS funding usually requires two rounds of CBT at primary level, but I believe you can request tertiary/ specialised care if needs are severe.

I hope you get the right help to live your life without OCD being in charge. I sat through many sessions of CBT with ERP with my son when he was a teenager and saw firsthand how effective the treatment is. Not easy, I know, but it works.

I know of the person you've seen (never seen or spoken to him myself, like!) and if he's suggested the ADRU then he must think it would best meet your son's needs. He'd certainly know! But all the services at that level communicate with each other as I said: CADAT are only mentioning Springfield to me as an alternative and that is in a different NHS trust. So if your son was referred to the ADRU and Springfield would be better for him, they would work that out between themselves at some point, quite possibly at the assessment stage.

I was referred to Springfield in 2017 after my third round of CBT through local services. The first two lots were through whatever IAPT was called then, and the third was the highest level (step 5) offered by the local recovery team (secondary care). All three interventions were pretty long to be fair (shortest one 18 sessions), but utterly ineffectual.

Shortly after the third one, I asked to be referred to a national-level service (had learned about them from a couple of TV documentaries) and they did it really quite quickly. I wasn't given a choice as to which one. I had the assessment and was put on the waiting list. I didn't actually meet the HSS criteria because as well as two rounds of CBT, you also have to have trialled a minimum number of medications. But the very day of my assessment Springfield offered me a place on their waiting list via the HSS funding route, with the intention of having me start medication whilst there. I didn't realise at the time that this was a condition of my acceptance! But I ended up not going anyway, because I can barely eat and drink in my own home so living elsewhere, with other people, sleeping in a bed used by however many others, is simply not feasible. I was kidding myself.

This time, I originally asked if local services could repeat step 5 CBT but taking into account my newly diagnosed autism, but they said they still couldn't offer therapy at the level I needed. Again, they agreed to refer to a national service very quickly; I don't know if I've been lucky there. I talked them into referring me to CADAT because it is outpatient. This time funding took ages to sort out because the panel wouldn't give me central funding for outpatient treatment due to the medication issue. Bizarrely they relax this rule if the patient can't take medication for medical reasons, but don't consider OCD a medical reason! So my funding this time has come via my local ICB, which is I think the stream you'd have to go through if your son hasn't had enough rounds of CBT. I was worried they'd be awkward and refuse to pay, but the specialist services panel confirmed I hadn't been awarded central funding on a Monday and I got an email from CADAT confirming I was on their waiting list on the Thursday, so very quick and easy.

I'm sorry that your local services refused to refer your son to CADAT in the past. And to not even want to offer any CBT and ERP for OCD, when it's the only NICE-recommended therapy for it . Was that due to his autism? To be honest, I've had the impression that my local team have been glad to move me on elsewhere because I am supposedly such a complex case(!). I'd definitely show them whatever reports you have from the private assessment and make sure to emphasize the credentials of the psychiatrist you saw. But it is really positive that therapy has helped him so much before. That bodes well for him! Is he in contact with local services already or is that the first thing he has to do? It's so fantastic you are being so supportive and proactive in helping him.

I thought you might guess who I meant! I'm really pleased we were able to get an assessment with him (after a seven-month wait). Hopefully, his report will push the local team to refer DS to ADRU.

It's reassuring to know that the assessment at the Maudsley will consider the appropriate setting for DS. Thanks for that information.

So sorry you had to go through three rounds of ineffectual CBT. That must have been such hard work and so dispiriting when it didn't resolve anything. But it's interesting to hear that your referral went through in spite of you not meeting all the criteria. My DS really doesn't want to take the antipsychotic he's been given, but we've been told he won't get funding if he doesn't. This may be true of the funding team - I don't know - but it seems very unfair, especially as (according to the professor who did the private assessment) the Maudsley don't care either way. And yes, it's silly that OCD is not considered a medical reason for refusing meds!

Do you think you'll be able to accept a referral to Springfield this time? I do hope you can. None of this is going to be easy (I know that's an understatement), but imagine being back in control of your life instead of OCD controlling you. It will be worth it in the end.

In answer to your question about why it's been so difficult to get CBT for my DS: I know that our local services are overstretched and the health team regularly close their services to new patients. However, I also think DS's autism diagnosis has played a part. There have been comments from professionals that suggest they see his OCD as part of his autism, or as too difficult to treat because of his autism. However, the professor was very clear that DS's autism was no barrier to treatment; it simply meant he might need some adaptations.

The fact that DS was helped with CBT before is what gives me hope. This was delivered by a therapist who trained at the Maudsley: she was brilliant. You'd think this history would have made the community mental health team more inclined to refer DS for CBT, not less.

Anyway, I'm making myself such a pain in the arse to the CMHT that they'll be grateful to offload DS in the end! I'm so angry and upset that DS has lost years of his young life stuck at home, unable to study, work or have friends. It's so unfair when there is a treatment pathway clearly laid out in the NICE guidelines. DS has now lost hope and doesn't have the skills to advocate for himself, so it's my mission to get him the help he needs. I won't stop until he does.

In answer to your question about local services: DS is already under the local community mental healthcare team, yes. So it's just a matter of persuading the team to refer him on to specialised care. Of course, once I achieve that, I will have to persuade DS to go, which won't be easy if it's residential care. I know this will be incredibly hard for him. But I think he'll see that this is his chance to lead a happier life.

Good luck to you with your treatment 💐. I know how much courage it takes to face up to OCD fears. Have you seen the documentary on Bethlem made in 2013? I watched it yesterday and was encouraged by the progress the patients made. It also gave me more realistic expectations. I have a fantasy that DS will come back from residential care restored to his pre-OCD self and, of course, it won't be like that at all. But the hospital sets people on the right path and all of them continued to make progress after leaving.

I really couldn't possibly go into hospital voluntarily, so if CADAT decide I'm not suitable for treatment as an outpatient they'll effectively be discharging me from all the HSS services, because I will have to refuse to go to Springfield. They review after six sessions, so I've got four left before I know what will be offered to me. I'm pretty pessimistic, unfortunately. I've had something else going on that's related to OCD/mental health but sort of separate to the treatment at CADAT, and it has made things worse than ever. It's all going wrong for me. But never mind that(!). I'm glad you have hope for your son and I think you should

I saw the documentary about the Bethlem when it was on. There was another on at around the same time called OCD Ward, which was about Springfield. That was on ITV but I don't know if it's available to watch anywhere now. A psychiatrist I saw had mentioned something about a ward before that, but not in any detail or as a serious proposal. It's a bit ridiculous that years later I had to ask the mental health team if I could be referred to one of those places I'd seen on the telly! Doing their job for them.

Repeating myself in part, but regarding funding: if the CMHT will refer, your son should be offered an assessment even though he doesn't meet all the HSS criteria, because I have been, twice, as described above. I am less clear on how the assessments are funded compared to the therapy, but I am 99% sure mine were referrals through the HSS route. Then the chosen service assessed me and all the services discussed my case. When I was awarded HSS funding for Springfield it was because they felt they could be flexible about the medication criteria because they could start me on something while under their care, as I said. I'm not sure if they still take that line with some or all patients, or if the ADRU ever has done (with that being a bit different to a medical ward). I also don't know how they view patients not fulfilling the criteria regarding number of previous rounds of therapy. But if the HSS panel won't approve funding and your son's OCD is assessed as being severe enough to warrant treatment at that level, they will apply to your ICB to try and secure funding that way.

ICBs have no set criteria for this, they just have to be convinced that it is a good use of their money and that there's nothing offered locally that would be more appropriate (and less expensive!). The recovery team here have been trying to get me to take an SSRI and antipsychotic for years and my local ICB didn't hold that over me and say that they wouldn't fund therapy at CADAT until I'd tried absolutely everything available locally including the medications. I had had three lots of CBT though... that is a difference in our cases and I don't know if the ICB might insist the CMHT give your son another round of therapy before they'll cough up for the ADRU or wherever. But this is all supposition. The important thing is to get the ball rolling and you have great evidence now to demonstrate that he does need specialist intervention. All the best and I will be thinking of you both so if (when?!) you get the good news that a referral has gone in, I hope you will update. And if you have a question you think I could answer I will try, but I know I go on a bit and my posts are probably rather off-putting! This is quite a niche area though so I had to reply in case no one else did.

@flourella - I'm very sorry you can't accept in-patient care, but I understand how difficult this must be for you. I hope CADAT can find a solution.

I may well find DS refuses in-patient care as well. But that's a worry for another day.

I'm not at all surprised that you had to ask the mental health team to refer you to CADAT or Springfield. I assumed that my son's team would know all about specialist care and the referral process, but they didn't. I think they are probably used to referring people to IAPT, but it's far less common to refer to tertiary care. So I'm in the position of having to become an expert myself so I can advocate for DS (am very used to this!).

I'll look out for the Springfield documentary as that would be useful for me to watch.

What you say about ICB funding is exactly what OCD Action told me that the CMHT should have done when HSS funding was refused last year. The CMHT didn't seem to realise this was an option. At least I know this now and can point it out to them.

I'm hoping that I can argue that DS shouldn't be made to complete another round of CBT locally because his OCD is too severe for that. But I'm aware that may be a battle. However, as you say, I now have great evidence at hand 🙂.

Thank you so much for everything you've posted. Your posts are not off-putting in the slightest! On the contrary, I really appreciate the time you've taken to respond. I promise to update when I have any news.

And very best of luck with your treatment. I understand that it must all feel impossible, especially if something else is making it worse. But please don't lose hope. You just need the right help.

Thanks for the good wishes.

Just coming back to confirm that my referral to CADAT, made at the end of 2022, was through the HSS stream despite me not meeting all the criteria. Here's a screenshot of part of the letter I was sent from CADAT via email at the time. My exact circumstances in relation to the criteria (as taken from the OCD-UK website) were:

• A profoundly severe condition as measured using the Yale Brown Obsessive Compulsive Scale (YBOCS). I score 36.

• Two trials of serotonin reuptake inhibiting medication (SSRI) for a minimum of 3 months each in maximum recommended dosage and without substantial improvement. I took fluoxetine for a relatively short period in 1998 or 1999. I can't recall what dose I was on. I have been prescribed various other medications since, but have never taken any of them and have always been completely honest about this.

• Augment the SSRI with another medication, frequently with an anti-psychotic medication or sometimes Clomipramine. Nope!

• Two trials of CBT involving exposure and response prevention (ERP) without significant improvement. I'd done three quite lengthy rounds up to the highest intensity offered locally.

Despite the above, I was referred and assessed under HSS. Hope you can use this to challenge them if they say the same thing as they did last year.

That's really helpful, thank you! My son scores 34 on YBOCS, so very similar to you. And it's very useful to know that you didn't meet all the requirements yet still received funding. I will mention this if I need to.

I'm also going to point out that there is another form of funding that CMHT can apply for in addition to the HSS. I don’t want to accept another round of CBT locally. I think it's unlikely to help DS and will just further delay proper treatment. He's suffered enough delays already.

I'm spending this afternoon putting together all the evidence. Your contribution will really help - thank you. It's very kind of you to have looked out your original referral.

The CMHT psychologist is visiting tomorrow morning to assess DS, so I will have a chance to put my case then. He's never actually met DS, although DS has been under the mental health team for six years. So I hope that this meeting will be a turning point.

I hope that tomorrow's appointment is not too taxing for either of you and that the psychologist gives you a proper hearing and goes away to discuss it all with the team. Also that he doesn't come out with things like: "we can't try the HSS route because your son doesn't meet all the criteria so there's no chance", "ICB funding for this sort of thing doesn't exist", "we need him to try the antipsychotic we've suggested before we look at anything else", "he doesn't need this sort of specialist treatment because we have our own therapists right here", or any other such rubbish. Also that he has at least heard of such provision and you're not starting from scratch educating him about it!

You surely have the knowledge and evidence now to state your case and counter any obstacles they might claim are in the way. Good luck!!!!!

Thank you: I have answers to all those statements if he does make them! Am just summarising everything on a Word document. It's a bit like revising for an exam 😏.

Is your answer to the first statement "well, flourella on Mumsnet said..." and then tell him what I've said, but using far fewer words? 😅

Exactly that! I'm name-dropping the Prof and you 😆!

Hello, sorry to hear your son is struggling so much. It's a disease from nightmares.

I have never been to the Bethlem, but I was in the priory north London under Prof Veale (who I'm assuming that's who you've seen!) in the OCD unit and it was life changing. I was there for 10 months. (Prof now works at the Nightingale, not Priory). I have met others who have been at the Bethlem and only have good things to say, it's gruelling beyond belief undergoing treatment but recovery is possible. As the pp said, at Bethlem you need to be able to among your own meds, food, care needs etc as it's pretty independent living. If he's not capable then inpatient at Springfield is better where there's 24/7 care.

@flourella - I've PM'd you with an update :).

@Zimrun - thanks for replying. You're right about it being a disease from nightmares: it's so cruel.

Yes, it's Professor Veale who did my DS's assessment. I'm so happy to hear that your treatment under him was life-changing for you. This is what I'm finding so frustrating - that there is treatment available that my DS should have access to!

I hope you're thriving now. But wow, ten months! That is important to know: that it takes time to overcome these thought patterns.

It's great to hear that others who've been at the Bethlem only have good things to say about it. Prof Veale warned DS that the treatment would be very hard, but I'm not sure how much DS took that on board. He probably doesn't believe anything will happen anyway, as he's lost hope of having any treatment.

Having said that, he seemed cheerier after the meeting with the psychologist today, so maybe it's given him a glimmer of hope.

We have another meeting in a couple of weeks' time, so I have yet to see if DS will be referred for funding.

I hope he does have a glimmer of hope and can hold onto it. Really, there's nothing to lose from trying the treatment.

I hope he gets the funding and agrees to go.

If you want to ask any specific questions about the treatment fire away or send me a PM.

@Zimrun - thank you. I really appreciate you taking the time to reply and share your own experience. I'll update when I get any news.