To think this therapy program is unfair

[Happiestyearofmylife]

Nhs dbt program they are saying people have to have their camera on to take part. My dd is very self conscious and also has social communication problems. They say it’s because she could have someone else in the room with her but surely you could with the camera on? I understand it for the group bit but it also has a 1-1 bit where only her own problems will be talked about and they still want the camera on Aibu to think people shouldn’t not be allowed therapy over this?

My daughter has half her face on and half her face off - works for her...

So your daughter has EUPD and ASD and they are offering her things she really can't cope with. Typical NHS, if you're a square peg they will jam you in the round hole or you'll be left to fend for yourself. It's really not fit for purpose IMO and there's no reason for them not to be working face to face - we don't have to socially distance anymore so I don't know why that's being used as an excuse and it's not likely that people in therapy are going to be jammed in cheek to cheek anyway.

If you can afford it then I would recommend going private (expensive I know!!) but in my experience the care you get is on a completely different scale - they actually listen and treat you like an individual for a start.

So NHS trusts I know, including mine, continue to require social distancing, masks, etc etc.

OneinNine Yep that’s exactly what will happen the therapist has written her a letter and saying she won’t be able in the service again for at least six months if discharged. They had told her before that if she wasn’t ready she could ask to be referred back at any time.

@ SometimesRavenSometimesParrot the one to one is part of the dbt program. She has to do the group to get access to the one to one.

@Happiestyearofmylife has she tried minimising or covering up her image so she doesn't have to look at it on screen?

@AndyKaufmanIsAlive

It’s not fair on the other people in the group who have their cameras on.

This is absolutely no reason not to provide adjustments for disabled people. That's like saying blue badges aren't fair on non-disabled people. IT's pure discrimination.

But they wouldn't have put her forward for the group if she wasn't suitable.

If she needs specific requirements then she will have to do something different..you can't expect a group to change for one person when everyone else is doing the same thing. That's not fair on the majority. Comparing it to blue badges is ridiculous imo.

@Happiestyearofmylife

Nhs dbt program they are saying people have to have their camera on to take part. My dd is very self conscious and also has social communication problems. They say it’s because she could have someone else in the room with her but surely you could with the camera on? I understand it for the group bit but it also has a 1-1 bit where only her own problems will be talked about and they still want the camera on Aibu to think people shouldn’t not be allowed therapy over this?

OP says there's 1-2-1 component, I think she meant she can't only do the 1-2-1 or she can't have 1-2-1 in person or voice only with no camera.

OP I have heard really good things about DBT in terms of it being genuinely helpful to people with a diagnosis of EUPD. It can be really meaningful. I know this is a rubbish situation for your dd, I do have sympathy with what she's worried about and I'd struggle too with having a camera on for my own reasons but even if this wasn't an issue, there would be others that crop up because DBT is just challenging. There will be other ways it pushes her buttons and you need to be prepared for that.

The NHS isn't good on mental health and it really is one of those situations where I would really urge you to find a way to make this work together. It's not how it should be but refusing the help because it's challenging means no other help will likely be on offer. That really isn't the best thing for your DD overall.

I would also urge you to look up the work of Dr Jessica Taylor and investigate private therapy if it's at all affordable (I appreciate it isn't for many). She is pushing for labels like EUPD to be dropped and for people to have trauma-informed care instead. I would definitely do the DBT given that should do some good, but also just be reading around too. Schema therapy paid for privately (meaning it can happen in the flesh) also has really good success rates with EUPD.

I don't think anyone here would dismiss how much of an issue this is for your dd but so many people get zero help from the NHS so it's better than nothing. And I would stand by the fact that almost every other person attending is likely to be struggling badly with some aspect of what's being asked of them - it could be bonding if they all have to grit their teeth through tolerating those things.

Understand that this is a group treatment for people with difficulties that crucially involve other people. Being in the group is a core part of the treatment. If she can't do it by videocamera -although you haven't said why she couldn't if she covers up her own image- then she is best to wait to do it in person. It might be longer that is true. It would be very disruptive to the group for one person to not participate in this way. One person has camera off, everyone else will do the same

@Happiestyearofmylife can she identify the issue she has with video being on? For example my Autistic DS feels very uncomfortable with the unavoidable eye contact of looking directly at the screen, this is school and therapy video calls, none of this is psychological therapy. He's placed a teddy in front of him before, also looking off to the side to avoid that full intense feeling of eye contact. If it's her own image she feels uncomfortable seeing a post it to cover as PPs have suggested might be helpful. Could she have her video on but her face turned to the side? What about being able to step away for small breaks, where she can still hear but can't be seen? Would a fidget help? Would standing up on something like a wobble board and looking more over the top of or to the side of the screen help reduce the overwhelm. Sometimes there isn't anything that can make the situation workable, it's not something that person can ever cope with.
Other times there may be ways to make changes that reduce how overwhelming a situation is enough to make it workable.

@Fleek

OP I have heard really good things about DBT in terms of it being genuinely helpful to people with a diagnosis of EUPD. It can be really meaningful. I know this is a rubbish situation for your dd, I do have sympathy with what she's worried about and I'd struggle too with having a camera on for my own reasons but even if this wasn't an issue, there would be others that crop up because DBT is just challenging. There will be other ways it pushes her buttons and you need to be prepared for that.

The NHS isn't good on mental health and it really is one of those situations where I would really urge you to find a way to make this work together. It's not how it should be but refusing the help because it's challenging means no other help will likely be on offer. That really isn't the best thing for your DD overall.

I would also urge you to look up the work of Dr Jessica Taylor and investigate private therapy if it's at all affordable (I appreciate it isn't for many). She is pushing for labels like EUPD to be dropped and for people to have trauma-informed care instead. I would definitely do the DBT given that should do some good, but also just be reading around too. Schema therapy paid for privately (meaning it can happen in the flesh) also has really good success rates with EUPD.

I don't think anyone here would dismiss how much of an issue this is for your dd but so many people get zero help from the NHS so it's better than nothing. And I would stand by the fact that almost every other person attending is likely to be struggling badly with some aspect of what's being asked of them - it could be bonding if they all have to grit their teeth through tolerating those things.

This

I did 2 years of DBT. Changed my life - but the rules were very strict and served both to keep the group working effectively and maximise positive outcomes. If you missed more than 2 sessions in a row, you were out. If you refused to engage with the group, same. If you didn't do the homework etc.

I know having the camera on is hard, but it is needed to protect everyone else in the group. I would have found it impossible if I had felt that there was someone unseen watching and listening to me without being present.

If she is not ready to engage, then she is not ready. But DBT is incredibly challenging and will make you uncomfortable - that is part of the process. You learn distress tolerance skills to keep you safe and then you start to challenge the maladaptive behaviours developed to deal with the difficulties of living. It IS exposing and difficult and I remember sobbing while people "made" me do things i "couldn't" do, but it worked.

I have not self harmed in 9 years, no suicide attempts in 10. I wouldn't fit the DSM criteria now.

Just to add that it is the therapeutic relationship built with the 1-1 therapist which helps the most, is the most painful and challenging and relies MOST on interpersonal connection. You cannot do this with a blank screen. I had no idea what my therapist looked like for the first 3 months as I couldn't make eye contact, but I was there.

@ClumpingBambooIsALie

How do I know that black square isn’t a bloke wanking off whilst I cry about what happened to me?

How do you know that's not happening offscreen anyway?

I was referring to a perceived threat that a patient might feel if they are unable to see all participants. There is a risk with everything that is done virtually of course. We put as many safeguards into place as possible and have to get everything signed off by governance. In my team we carefully assess everyone prior to attending a virtual group and that includes asking who is going to be in the house with them etc etc. We have had to stop some of our usual interventions because they are too risky to do virtually. We have additional staff on virtual groups to help observe patients because it’s so hard to monitor what’s going on. If a patient was behaving inappropriately we can respond to that or even instantly block them from the group if needed and follow it up. Our patient assessments and risk assessments have been robust enough to prevent this over the last year or so. As clinicians we are limited in what face to face interventions we can do by Public Health England and how our trust is able to impose them due to estates, staffing levels, clinicians being CEV themselves etc. As pp have stated it is virtually impossible to deliver some therapies effectively over the phone. You need to be able to see the patient’s reactions and body language. It’s incredibly hard if not impossible over the phone to work out if a pause is because someone has zoned out, is thinking and needs time to answer, is trying to hold back tears, is looking blank and needs the question re wording, if they think someone may have walked past and is fearful they may be overheard, if the person has left the phone and gone to answer the door, is eating or drinking or even if the person has died! It doesn't work and so potentially you may actually be harming the person rather than supporting them..

On Zoom, you can turn off your own image on the screen so you can see everyone else but not yourself, whilst still keeping your camera on.

[quote esloquehay]@Oscailandoras, OP confirmed that her daughter has ASD...🙄[/quote]
No, she has EUPD. A personality disorder, not a neurological condition.

@AlphonsoTheMango The OP has also stated ASD.

[quote 1DoesNotSimplyWalkIntoMordor]**@AlphonsoTheMango The OP has also stated ASD.[/quote]
Ah, you're right. I went through and didn't see that the first three times I read the OP's posts!

Thanks!

She has eupd and asd. We have an appointment with a private psychiatrist due to concerns that the eupd one isn’t correct but for now sadly the cmht will treat her as a patient with eupd.

Hate to pester but I'm still wondering your response to the suggestions of attending whilst minimising or sticking a post it over her image.

Those are good suggestions, @NutellaEllaElla. I'm uncomfortable with seeing my image on screen so I can see where it would be helpful to someone who feels the same way.

I think you're doing the right thing to get a 2nd opinion from a private psych. I know it's been acknowledged that many women with ASD are misdiagnosed with BPD/EUPD, I would want to be sure she was receiving the correct support. I too am skeptical of BPD/EUPD diagnosis for many reasons I won't go into here (bit along the lines of Jess Taylor). I dont think history will look kindly on this particular diagnosis, or how MH services often treat people given it.

Thank you for all suggestions I don’t think the therapist would let her be in the dark. As they see they need to see her clearly the post it note could work though

We have an appointment with a private psychiatrist due to concerns that the eupd one isn’t correct but for now sadly the cmht will treat her as a patient with eupd

Even if the private psychiatrist overturns the EUPD diagnosis (which is hard to do as EUPD often exists alongside other conditions and she’d need a clear rationale behind changing a diagnosis) the CMHT may not accept that and still treat her as a patient with EUPD. Why do you feel she’s been misdiagnosed?

It’s not uncommon for patients to have a list of conditions such as EUPD, ASD, functional neurological disorder, OCD, chronic low mood, Generalised Anxiety Disorder etc. If the CMHT want to treat EUPD first it suggests her EUPD symptoms are the ones that stand out as hindering her progress or endangering her most at present.

It might help your DD more if you focus on getting her private therapy for EUPD rather than trying to challenge the diagnosis in the hope the NHS will offer different therapy. Places for group therapy are very limited, particularly DBT. If she’s not ready for group therapy online I’d work on strategies to help her feel ready and able to have her camera on, or she’ll lose out on the therapy. CMHTs are overwhelmed with patients and struggle to retain staff at present so it may be some time before they can accept a re-referral and offer an alternative.