Would you stop paying for private therapy if you found out the NHS therapist disagreed?

[Reigncast]

I have read Mumsnet for years but this is my first post on this account. I had another account previously and was accused of being a troll, which I don’t want to get into, but I am genuinely not one.

I genuinely don’t know if I’m being ridiculous here and would really appreciate some outside opinions.

DS is 10 and is autistic/ADHD, with quite significant anxiety. He’s in mainstream school and has generally managed, but the last couple of years have been difficult, particularly around school, changes to routine, unfamiliar places and anything he thinks he might get wrong.

About 18 months ago we started seeing a private psychologist/therapist who specialises in neurodivergent children and anxiety. We also have a private OT.

The therapist has been, honestly, transformative for DS. Before we started, he was having meltdowns several times a week, refusing things he had previously enjoyed and becoming increasingly anxious about school. He was sleeping badly too.

There have obviously been ups and downs, but he is now much better at recognising when he’s anxious and talking about it. He’s gone back to doing things he had stopped doing. School have noticed a difference as well.

So I’ve always felt the money has been very well spent.

We have recently had an NHS appointment and this is where I’m struggling.

The NHS professional basically said they thought we may be accommodating DS’s anxiety too much and that some of the private therapy might actually be reinforcing his avoidance.

They suggested that rather than removing or changing things when DS becomes distressed, we should be encouraging him to tolerate more of the anxiety and learn that it is uncomfortable but not dangerous.

I understand the principle. I’m not saying the NHS person was talking complete nonsense.

But some of what they were describing as “accommodation” is exactly what the private therapist has taught us to do.

For example, if DS is extremely anxious about something, we might break it down into smaller steps. We might let him leave a situation and return to it. We might change the environment rather than insisting he pushes through. The private therapist’s view is that once DS is regulated, he’s much more capable of doing the thing.

The NHS view seemed much more along the lines of not allowing anxiety to dictate what he does.

DH is now firmly on the NHS side.

He thinks we should stop the private therapy, or at least pause it, and follow what the NHS professional has recommended.

I’m struggling with this because I don’t see how you can look at the difference in DS over the last 18 months and say the therapy isn’t working.

I know someone will say correlation isn’t causation and obviously I accept that. There have been lots of other changes as well. But I have been the person taking DS to these appointments, doing the work at home and seeing him when things go badly. I have seen what has changed.

And yes, I probably am very protective of him. Maybe I’m just too close to it.

The other complication is that the private therapist has known DS for 18 months. The NHS professional met him for one appointment.

But equally, I don’t want to dismiss NHS advice just because I have more confidence in someone I’ve been paying privately.

Please don’t turn this into a private vs NHS thing. We are incredibly fortunate that we can afford private treatment and I am absolutely aware how fortunate we are. I’m not suggesting private professionals are automatically better.

This is specifically about two professionals giving apparently conflicting advice about the same child.

Would you stop paying for a private therapist you trusted if an NHS professional told you that some of their approach was actually counterproductive?

Or would you ask them to speak to each other and try to work out where the disagreement is?

DH says I’m effectively paying someone to tell me what I want to hear because I don’t like seeing DS distressed. That really upset me, although I can see why he thinks it.

The private therapist isn’t someone who just agrees with me either. She has challenged me plenty of times and has actually told me to stop doing certain things for DS because I’m making him too dependent on me.

The phrase “reinforcing avoidance” has really thrown me because that’s now exactly what I’m worrying I have been doing.

But then I look at DS now compared with 18 months ago and think, how can all of this have been harmful?

And yes, I know someone will mention the cost.

It’s £185 a session and we currently go weekly.

Yes, I know £185 a week is a lot. We can afford it, before anyone asks. I’m not saying everyone should be able to do this.

But I also don’t want to throw away something that seems to be helping simply because we’ve been given an NHS opinion that conflicts with it.

What would you do? Get a second opinion? Ask the private therapist to liaise with the NHS professional? Stop altogether? Or carry on because DS is clearly doing better?

I genuinely don’t know if I’m being ridiculous here.

Is the NHS therapist a specialist in adhd/ autism? It could be that they are correct but normally treat patients who are NT? Maybe the private specialist has identified additional barriers that need to be addressed first (such as facing things when more regulated) that the NHS person hasn't fully taken into account?

The NHS is frequently wrong. If he is improving under the private therapy, I’d continue.

Given what you say about the improvement you’ve seen, I’d stick with the private therapist. There probably isn’t a single right way or wrong way but you seem to have found an approach that works for you and your DS.

They say it’s reinforcing his avoidance, but you’ve said he’s actually gone back to doing some of the things he’d previously been avoiding. So why do they think that?

If things were working (and you say the school has noticed improvements as well) I certainly wouldn’t be making significant changes based on someone who has met him once.

ETA - I’ve had NHS therapy several times, and each time found it extremely tick box and standardised. I’m sure it’s evidence based and works for a lot of people. But it won’t work for everyone (I mean, no treatment for anything is 100% successful) and I didn’t find a huge amount of flexibility within it. This may be what you’re coming up against - a generic way of working vs potentially a more personalised approach from a private therapist

There's not one definitive method for treating things like this - there are schools of thought and there are approaches that tend to be helpful, but it's never going to be 100%. If you're happy with his progress under the private therapist, stick with it. The NHS therapist is probably thinking about the difficulties of working in tandem with a different professional they don't know who might be telling him one thing while he's hearing something else with the private therapist - which I agree could be unhelpful and not very conducive to progress for your child. But they don't know him well yet and you're already happy with the private treatment approach, so I would tell the NHS therapist that.

I absolutely agree that increasing his tolerance for distress is going to be useful for him, even as a ND kid who might struggle with it more than others, though (although I don't imagine the private therapist would disagree with that! But is probably thinking at it through the lens of ND more). Sounds like that's what you're doing anyway though, albeit more slowly than it seems the NHS therapist would have.

I have an autistic son and do what you do, ie leave and return, break down into steps etc. Those accommodations make our life bearable. I wouldn't be listening to anyone who's met my son once, especially over someone who's worked with him for 18 months.

I'd stick with the therapist who is helping him. Sometimes you have to work with what you've got. You can only change what is ready to change and it doesn't have to be a cold turkey approach and fuck how much distress it causes.

Obviously I'm not saying enable him either but Rome wasn't built in a day. If he trusts his existing therapist, he's making progress with them, I'd stick with them. The relationship is worth a hell of a lot in therapy.

My NHS therapist suggested I pull activities out of a jar when feeling suicidal. My private therapist has helped me far more than that ridiculous woman has. Just because they're NHS, doesn't mean they're automatically right.

Nope. Nhs therapists are not always as clued up as they like to think. You've seen it's working and it's clearly not reinforcing the avoidance if he's back doing things he used too

I would trust the private therapist more than the NHS one

Therapists often have different approaches.

it’s not an nhs vs private thing.

maybe try the new approach (put dh in charge of this) and see how it goes?

then if it doesn’t work (I suspect it won’t) dh can sort it out

My understanding is that working with ND patients can be very different to working with NT patients and some of the usual approaches taken with NT patients are shown not to work well with ND ones.

If the NHS therapist isn't a ND specialist then I would be very sceptical about their advice.

I am ND (Asd and adhd properly diagnosed) as are my kids.

the private therapist is right the NHS is giving you non ND affirming guidance imo.

you have to accommodate and break it down. Otherwise they become dysregulated they burn out.

why are you seeing NHS and private at the same time ?

what are qualifications of each therapist ?

This is what I was trying to say but more succinct. Spot the autistic !

The level of training about neurodiversity in NHS mental health services is patchy to say the least.

I would not make an assumption that either NHS or private is better…. It’s entirely based on the individual.

As you say you have seen an improvement I would continue with the private one. The NHS one might only be a small number of sessions anyway.

£185 a session seems extremely high I assume they are some kind of experienced and qualified psychologist?

It’s not about wrong or right, it’s what’s right for YOUR CHILD.

for all you know the therapist may be getting him towards increasing his tolerance levels at some point now that he’s far more stable.

It’s exactly what I would do as a therapist, build trust, get functioning, build in systems to cope and exits when he can’t, build resilience, and eventually move towards learning to tolerate ‘some’ anxiety and increasing that tolerance.

From what I have heard from ND DD2, NHS therapists in our local adult MH service, apply treatments for NT patients to ND patients - they don’t understand what they are doing!

If I were you, I’d believe the private therapist over an NHS one, when one has 18 months experience of DS and the other one appointment!

Agree with PPs that there are different schools of thought and it's not NHS vs private, however the cynic in me does wonder about the benefit of your son not improving much for the private therapist, as it keeps you coming back. The thing is, if you dont challenge the anxiety, if you're not careful, his world will just keep shrinking.

Are they conflicting though? Both strategies could be valid. If ds has resumed some activities are there other things or parts of those he is resisting or avoiding?

Run, run as fast as you can from the nhs therapist! It really sounds to me like they have no experience of working with ND patients and that can be so harmful.
it sounds like your son has made lots of progress and it also sounds like your therapist understands. It is completely true that you can’t get anywhere while disregulated, so working slowly is essential.
I would also question if there was perhaps any misogyny involved here? Just because I have seen this with a friend recently where their ND child’s anxiety was basically blamed on the mum meeting too many of the kid’s needs.

The way you have put it, each therapist seems to be offering one half of a truth that spans both approaches. Obviously you need to be encouraging him to confront the anxiety to the extent that he is able to, but equally you need to be finding work-arounds to avoid him encountering more anxiety than he can handle.

I imagine both therapists would agree with that, and that your actual difficulty with the NHS therapist is that s/he feels that you haven't got the balance quite right.

The difficulty is finding the sweet spot - the exact level of challenge that helps your son without overwhelming him. As his mum, it wouldn't be surprising if you were too immersed in his distress to be able to locate that sweet spot accurately. You probably err on the side of insulating him a little too much from his anxiety.

Can you try to enlist your DH's view and the NHS therapist's view to help you interrogate your own perception of what your DS can tolerate? It really isn't either/or. It is about the correct balance for your son.

We are limited, on this thread, in how we respond, because we don't know your son. The danger is that posters here (including me)will give responses based on generalities or on their own children. It might be better to speak to each therapist about the input of the other therapist and see how each of them would propose to integrate the two aproaches in your indvidual case.

I don't understand why he's seeing both? Anyway, the private has known him longer so I'd continue for now and see what the NHS one suggests. Just because a therapist suggests something, (unless it's not in the patients best interest not to follow the advice of course -not talking about the OT for instance) doesn't mean you have to follow that advice. Ultimately you know your child and if you've seen a vast improvement then I'd stick with the one that's helping at the moment.

It doesn't sound like you are reinforcing avoidance though. Breaking a task down or coming back later isn't avoidance. Plus with Autism the overwhelm can make it impossible to 'just push through' anyway.

What are the trainings of the private and the NHS professionals? There's a whole host of mental health trainings, some of which would be more appropriate for your son, some less so.

What is the experience of both therapist, how many clinical hours have they got behind them?

Speak to each professional at your next apt, explain that their advice conflicts and listen to how they respond. Can your private therapist acknowledge the NHS person's point. Can they explain why they have a different view for your DC? And vice versa.

Most importantly, what does your DC want to do? Realistically you are going to need to pick one or the other. The NHS person is correct that avoiding anxiety reinforces the thought process - this is a congnative approach.
However, existing in a state of heightened anxiety is disabling, an unwell person can't be expected to be thrown into the deep end and not drown. Breaking anxiety provoking things down into chunks is systematic desensitisation, which is another valid approach.

It might be good to clarify the approaches each therapist is using e.g., CBT, mixed approaches, ACT, etc