National Specialist Services

[flourella]

Hi.

 

I don't really post here, because I'm not very good at online conversations and can't give any advice that meets the standards of that given by so many of the regulars, so have nothing to offer anyone. But I read the threads in this section most days. I have a question now though and hopefully someone can help me. Sorry for the length of this!

 

I was referred to the ward at Springfield a few years ago and put on the waiting list for inpatient treatment with possibly some home visits beforehand, but ended up declining the opportunity. I have had several lengthy runs of therapy with local NHS services and live in charity-run supported accommodation, but have no ongoing support from the mental health team. Around 18 months ago I requested a referral to be assessed for autism, and was diagnosed in December 2021.

 

In light of this I asked for yet another re-referral to the mental health team to see if local services could offer anything different, even if it was just a repeat of their highest-intensity CBT but this time taking the autism into consideration. I have had several appointments since, seeing a nurse, psychiatrist, and clinical psychologist, and the only thing they will offer is another referral to the national services. The last time I spoke to them they said they would get in touch with them all to try and discuss my case before making any referral. They don't seem to have made any progress so I thought I'd ask here what people who might know about these things think.

 

One thing is that as well as autism I also have a new psychiatric diagnosis, Persistent Delusional Disorder. I was described as having a psychotic element to my OCD in 2011, but refused to go on the prescribed anti-psychotic medication (I don't take any medication for mental illness) and it was never really mentioned again. Nothing changed in these beliefs, though. According to this latest report I am psychotic and have poor or no capacity in regard to these "delusions", though I am still not being forced to take medication for them. So I don't, because I don't believe I am delusional! But I am worried that this and/or the fact I am now known to be autistic will preclude a referral to anywhere. The psychosis was not mentioned during my assessment at Springfield so I assume it was left off the referral, but it's been indicated that now I have an official psychotic disorder it will be mentioned this time. I have never been acutely psychotic, or hospitalised, and the latest report says I do have good insight into my OCD and autism. Does anyone have experience of treatment at one of these centres with psychosis? Or autism??

 

I live in the north west of England, so not close to any of the clinics. I would travel to any as an outpatient, even though that would mean I couldn't eat and drink all day and present other difficulties regarding dealing with clothing etc afterwards (at least at first! Trying to be realistic about my current state, but optimistic that treatment can make a difference in time).

 

I don't want to go and stay anywhere as it's just not possible with my contamination issues. I was kidding myself last time. I'd have to be cured on crossing the threshold. So being referred to Springfield again would only work if they will do all the treatment at home or as an outpatient. Do they offer this?

 

I'm not sure I would be accepted at the ADRU anyway because of bulimia and other quite bizarre eating habits I have due to the OCD and (alleged) delusions. But is CADAT a good option for outpatient treatment? I believe I live too far away for home visits to be a possibility.

 

OHSPIC is the one that really interests me. Partly because it's quite new and didn't exist last time, but mainly because the possibility of tailoring an approach which takes autism into consideration is mentioned in the FAQs. I can't see where any of the other services' websites mention autism at all. I'm concerned about the funding route, though. I have the impression that CCGs will turn down funding if any alternative is available, and being able to secure national funding for a different service offering treatment at the same level would give them great opportunity to refuse. Also the clinic might not have a great track record of success simply because it will have seen relatively few patients in the relatively short time it's been open, making it look less attractive in that way. Are my fears well-founded?

 

I don't know anything about the Hertfordshire one or the Priory, and for some reason don't have them in mind as real options. Perhaps because they aren't often mentioned here. I believe the Priory has an extra step to any referral(?) and also get the impression it is inpatient only(?). Does anyone know anything about either of them?

 

Thanks for any insight or information.

 

 

Edited May 31, 2022 by flourella

[Gemma@OCDUK]

Hi Flourella,

It sounds to me like you have a good understanding about what National NHS services are available. You're right that the benefits of OHSPIC is that they can tailor treatment, offer at home treatment and are specialists in the treatment of OCD. You would need your CCG to fund the referral, but if you are supported by your local mental health team then that should work in your favour.

The reason you would use as an argument for OHSPIC over the other clinics is that they can offer outreach nationally for when OCD affects someone at home. Has anyone yet made a referral for you?

Gemma

 

 

[flourella]

Thanks for replying.

 

I have read that Oxford will offer home visits in some circumstances, but I'm actually more interested in outpatient treatment, where I would visit the clinic. As difficult as that would be, I think it would be easier than letting someone into my home, at least at first.

 

Do Springfield not do a full course of treatment at home or as an outpatient? They did suggest last time that they would want to see me as an inpatient, but that I might need a few visits initially to get me to the point where this was possible (though I don't think it ever will be); however, that doesn't necessarily mean that they never treat people just as outpatients.

 

Does OCD UK not have any information on treatment of OCD with the comorbidities I mention? I also have a fair few other conditions as well, but they are related to OCD so things like health anxiety, trichotillomania, etc. I'm worried that the diagnosed psychosis will mean they'll all refuse to even assess me. Or is that only for patients in acute psychosis, or with symptoms including formal thought disorder, disorganised speech, that sort of thing (which I have never experienced)? I'd really like to hear the experiences of people who have similar, quite complex issues if possible.

 

The referral hasn't yet been made. I'm waiting to hear back from the recovery team with whatever they have learned since our last appointment. Do you think any of the clinics will even have a conversation about the specific case of a patient not yet referred?

[Gemma@OCDUK]

Hi Flourella,

OHSPIC would very much tailor their treatment approach to your situation, so they wouldn't offer home visits until you were ready to. My understanding of the Springfield is what you referenced, that they can offer some outpatient support, again I imagine it will vary on a case by case basis.

I don't know of any information on OCD treatment with the specific co-morbidities you mentioned. Treatment should really be individual so there won't be one approach for everyone even with the same difficulties. The benefit of specialists in OCD is that they will have worked with others who have experienced similar problems and will adapt their approach when it is needed. 

I also can't see why your health professionals will not be able to discuss the best options for you with the specialist clinics. It sounds like they are taking the right steps.

Gemma

 

[Indecisive7]

Hi Flourella,

I was referred to and assessed at Springfield and offered an inpatient place there but then decided to go to the Anxiety Disorders Residential Unit instead. 

The ADRU and CADAT do have 'Exclusion criteria' including a diagnosis of a psychotic condition that requires treatment in its own right, so I think that that could cause issues unless your CMHT have decided that your Persistent Delusional Disorder would not disrupt CBT treatment and/or doesn't require treatment in its own right. 

On the other hand Springfield's inpatient referral criteria include one of: complex comorbid conditions (including psychotic conditions), diagnostic doubt, altered sleep patterns OR risk to self so you should definitely be accepted for treatment with them. Their referrers guide also mentions that they can arrange for patients who are too unwell to be admitted to have outpatient treatment at home before being admitted for inpatient treatment. I'm not sure whether they can offer Outpatient treatment alone.

I don't know whether the Oxford clinic has any exclusion criteria or not but it might be worth contacting them to see. I imagine one advantage of OHSPIC would be that you know that you definitely would not be required to attend inpatient treatment at the end of your outpatient care as they do not have an inpatient unit. 

Good luck with getting the referral sorted with your CMHT and with your treatment!

Edited May 31, 2022 by Indecisive7

[flourella]

Hi Indecisive7. Good to hear from someone who has undergone treatment at one of the centres. How did you find it? I hope it made a difference to you.

I suppose I'll have to wait and see what they each make of the delusional disorder. I haven't actually seen the referral criteria you outline. I thought I'd read that Springfield don't take patients with a diagnosis of an acute psychotic disorder, though I obviously wouldn't say that's what I have and neither would the mental health team. The psychiatrist did say he would have me take medication for it ideally, but that he won't make me. So if he's happy to have it left untreated hopefully the national services will be, or at least one of them, so I have a chance! 

It's complicated because I had these supposedly delusional beliefs and OCD when I was a child (and the bulimia from late teens) but they were entirely separate until my early 20s, when I got messages transmitted into my mind confirming worries I already had about a particular environmental danger. That's when my contamination fears started and all the rituals regarding hand washing, eating and drinking, etc. I think that there is plenty to work on in terms of the time spent washing, the limitations on my ability to store food and drink in my home, and my being unable to use plates and cutlery, etc, without having to go near the beliefs that led to the development of those problems. And I still have other OCD themes such as checking, counting, intrusive thoughts of horrible things happening, etc, that remain unrelated to the delusions, so I'm hoping at least one of the clinics will agree that there is enough OCD stuff to work on without having to "cure" the "psychosis".

The lack of an inpatient option is definitely one of the positives of OHSPIC for me. That's the one I really want to try, but I've read threads here where at least two posters say they have struggled to convince their CCGs to fund it.

Anyway, thanks for replying, and your good wishes.

Edited June 1, 2022 by flourella