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.

@WearingMyTherapistHat Agree entirely. And that has been my personal experience also.
Was it ethical for the NHS contact to tell me the NHS don't offer counselling as there is "No evidence to suggest it works" and that "It's like a doctor giving you a sweet and you thinking it's a tablet"?
Which of course is absolutely not true.
What they are offering doesn't work!!

Well the criticism of many in America is that therapy is indulging some delusions but that may not be the case here.

Where I agree with the NHS consultant is that you need to be aware the uncomfortable isn’t dangerous. I suffer from OCD and once upon a time it was out of control with my obsessive cleaning and intrusive thoughts of contamination. My exercise was to resist cleaning for a few minutes eventually to buildup a longer time scale so that I knew no cleaning excessively was not going to kill me.

No I wouldn’t stop paying for private therapy if the NHS therapist disagreed especially if your son is doing really well and you have seen positive changes with your son.

We had similar when we tried camhs, DD hated them and I found them not to be ND affirming. We stuck with the private therapist in v similar circs. Still going. So I would keep the private .

Stick with the therapist and your DH needs to get on board if you have seen great improvements in your son stick with it !

I have been in your position and would trust the therapist who is actually helping your DS, ie the private one.

Our MH trust does offer psychotherapy, although it may be time limited to 40 sessions or a year. However, the waiting list is 2 - 3 years.

DD2 has had it twice. Unfortunately, the NHS therapist didn’t believe DD2 has ADHD - suggesting HCPs make private diagnoses for the money, or people self diagnose after watching Tik Tok. DD2 pointed out, she was diagnosed 10 years ago, before ADHD became a thing, by one of the trust’s own psychologists!

I would continue as you are if it’s working. If you can lower his anxiety he will be more likely to engage and more open to change/ trying new things .
Its good to reflect and think actually could we push a little harder but i wouldnt stop doing what you are doing

It’s working by the sound of it, with any type of interaction with a MH professional it’s also how the patient feels about the therapist. Your DS obviously feels very comfortable with the person they have been seeing. It’s not even about who is the better therapist it’s about trust and just how much the patient can interact with at the best level for the best outcome.

I wouldn’t change.

maybe it would be helpful to understand what each of their specialisms is and then think about whether those specialisms in general pull against each other or can be complementary. Also, whatever either of them say is only ever advice. You are not mandated to follow any of it particularly if it isn’t working.

If you feel like the current private professional is both helping and is helping reduce the avoidance you could speak to her about this advice that you’ve had from the NHS practitioner and see whether she can help you reconcile this seemingly conflicting advice.

I would go to your private therapist to explore the dilemma you have posted here. Your NHS therapist has only seen your child once and will base what they are saying on a limited amount of info. Was it possible to get across in that session the progress that had been made.

Also consider that what your child needs will change overtime. A highly stressed and dysregulated child needs to feel less stressed and regulated first, once regulated, they are able to face more challenges. So it might be that the two therapists are not two different - but are describing different points on the journey. The NHS person saw your child after all the good work of the private one, so what they suggest will reflect that. I would unpick it with your private therapist (and take DH along too).

Agree very much with all this

I think you should ask your private therapist for a plan of when and how they would expect your son to need less of the accommodations. Basically how are you going to move on from the current low demand, lots of scaffolding approach - which has been great but perhaps isn’t going to be possible as he gets older.

If they say, we will aim to work towards reducing the accommodations gradually in XYZ steps then great. If they say never, I’d be concerned.

It may be a case of reaching the top of a long waiting list in the meantime having had to do something yourself. I know we've been in that position a few times

It would be worth unpicking why your DH has responded the way he has.

I don't suppose the private therapist's a woman and the NHS one a man?

I would continue to work with the private therapist. I have found my current NHS experience to be rather lacking when it comes to my children. I am going to be starting down the private path for my children as the NHS seems to have a one size fits all approach which is really not helpful when it comes to autism, ADHD etc. You have already seen a whole lot of progress. It would be a shame for it to be essentially wasted and things possibly regressing as a result of such a change. Also, you have been with the private therapist for eighteen months now... they will know your son much, much better than an individual who has only seen him once. The NHS individual will likely just be wanting to go with the easiest, more straightforward option for various reasons. Please go with what you feel is right for your son.

I’m definitely with the nhs therapist on this. My dd is autistic and we worked hard to get her to understand that she needs to fit in with the world not the other way around. Her therapists taught her coping skills and mechanisms rather than walking away. It did pay off as she’s an independent adult now. We did not allow dd to avoid things, but we did find ways to make them more comfortable basically

It's not always possible to "not allow" an autistic child or teenager to avoid things though. E.g. going to school. You can say they have to go, you can incentvise or punish, you can apply increasing pressure but you can't actually force them through the door. This is why so many children with Autism are missing in education. The only way my two with SEN can attend school is if school meets their needs.

I have evidence of both youth and adolescent camhs and neurodevelopmental camhs with my daughter who has ASD. Here is my opinion/some things to think with your h about:

• Was the person you saw a psychologist or a mental health worker making an assessment for further treatment? If not a psychologist, anything other than safety advice (eg hide the knives) you can ignore imo. My experience has been of the rubbish health visitor variety and they have made me cry with implied, unhelpful criticism more than once.

• the NHS Y&A psychologist (not neurodevelopmental) was very good but the strategies she tried to put in place with DD did not stick or in retrospect strike a chord with DD. We did some family work with her which was good at getting us to communicate better.

• the current neurodevelopmental psych she is seeing is having a completely different effect on DD. It seems to be all about getting to know herself and her triggers and she is coping SO much better with life than previously. This is all asd-focused.

Basically if the NHS stuff is not the neurodevelopmental team of ACTUAL PSYCHOLOGISTS and the current private stuff is working, do not mess with it. That's my advice.

It's very annoying the way the NHS does this. They immediately advise clients, who have usually been in private therapy for a long time while being on the waiting list for NHS therapy, to stop the private therapy. The client has been finding the private therapy helpful, and has built up a good relationship with the private therapist who now knows a lot about the client and has been working at a deep level, but the NHS therapist communicates the message that their way is superior. The client has waited a long time for it and it's free so usually they terminate the private therapy and do the NHS one. Six weeks later after a cursory course of CBT they are discharged and have nothing. It verges on unethical in my view. If you go to see a private therapist when you are already in a therapy they usually advise you to complete the other therapy and then come back if needed because they understand how harmful it can be to interfere in an existing therapeutic process.

camp private therapist here too. Seems to be helping, so the main reason to stop would be cost.

NHS mental health services are woefully under resourced and unfortunately, IMO, it affects performance and people skills of the people providing the help. What services are they offering for DS?

Would seek to ‘have it out’ with DH, privately. Some of the things he has said about you are nasty. Especially if you have done way more parenting and the work to seek help for DS.

If his worry is that the private therapy is too costly, understandable.

Longer term psychotherapy absolutely does work. But it’s impossible to quantify. Many people have found therapy transformative in profound ways, but they can’t be transposed into figures on a spreadsheet for an NHS management meeting.

@WearingMyTherapistHat I know I did - it gave me hope for the first time in years.
CBT was never going to work - I mean, can it ever work on longstanding and deep trauma?
Also, is it normal to feel absolutely exhausted afterwards? I remember coming out of sessions feeling so drained! But in a good way if that makes sense?

im not trying to be awkward, but why did you consult an NHS therapist if the private therapy was going well? Because having more than one therapist at a time is quite damaging, often because they have different approaches (as you’ve discovered). It’s best practice to stick to one therapist, especially as in your (son’s) case it’s working, and when it’s finished have a break before embarking on a different treatment, if needed.

Because private therapy is costly and we try many avenues to try to help our DC?

Yes, completely normal to feel drained. Your nervous system is dumping a load of cortisol that’s been spiked by anxiety, which is fatiguing. But also, neurologically, your brain is creating new neural pathways. For example, trauma flashbacks that are experienced in the frontal regions of your brain slowly become encoded and re-routed to the memory region towards the back as they are processed. The brain is a very calorie-greedy organ and it uses a lot of energy when you’re trying to get it to think differently about things.

When we talk of therapy being ‘work’, it’s as much physical as it is mental. And it can feel hard!

Also when it's your kid rather than you, the NHS feels like the most 'official' route and you want to do the right thing by your kid.