To expect some reimbursement for this private app

This really isn’t true.

As an aside, private psychiatrists can (and do) prescribe things ‘off label’ that the NHS would never do either.

I absolutely am not.

The post that you are quoting is in direct response to someone else’s post stating that shared care was refused because they didn’t deal with that provider or something along those lines. I was explaining that that isn’t the case.

Shared care has been pushed out in almost all areas near me, whoever the diagnosis is done by. The aim I believe is to remove it entirely. But that is not relevant to the OP because she’s already had it confirmed by her GP that they will accept shared care.

My concern for her is her lack of understanding of what it entails financially.

You’re implying that they will accept states care if nice guidelines are met. That is incorrect.

If they’re prescribing it meets guidance.

If the situation had been reversed and you hadn't attended the appointment you'd have lost all your money.

I agree with you @op that there should be some compensation for the time and stress etc.

You’re joking right?

Would you ask an NHS department to pay for your childcare and petrol under those circumstances? Or would you chalk it up to being just one of those irritating inconveniences that are a part of life, and attend the rescheduled appointment without expecting any freebies or discounts?

Compo nation, honestly 🙄

OP you are clearly struggling with your child’s behaviour and I have been there and I feel for you so much.

But the arguably worse position is that you DO get the diagnosis, and you try the meds and they work like a dream. But you can’t keep up with the costs of shared care (only you know if this is the case). They absolutely WILL refuse to prescribe if you can’t keep up with the private appts - legally they must be overseen by the psychiatrist and if you can’t afford these, the meds cannot continue to be prescribed.

With shared care and a stabilised dose, I have still paid at least £1000 a year just on the minimal review appts. In reality my child is severe and I’ve paid tens of thousands over the last 6 years as doses need tweaked, new things have been tried etc. But if it was straightforward that is what I would pay for 2 x 6 monthly reviews per year.

ADHD meds aren’t the golden snitch, you don’t catch it and all the issues go away.

What is far more likely is you’ll get sucked into things getting ‘a bit better’, trying a new dose, needing a review etc.

If you can ONLY afford the diagnosis, unless your clinician can tell you in writing that they’ll by some voodoo magic get you onto NHS care fully immediately (it won’t happen) then I urge you to save your money. You’ll be left with more questions than answers. Every answer and everything you try is another few hundreds of pounds down the drain.

Worth it if you can spare the money but if you really don’t have it, it’s not a process I would start.

It’s completely about the diagnosis.

If the diagnosis hasn’t been done to NICE guidelines, shared care will not be accepted.

Because you’re medicating something that isn’t diagnosed acceptably to the NHS.

If you had read my previous post though, you’d have seen that prior to this one I wrote a lengthy post about titration and what shared care actually entails.

However, the fact remains that if the diagnosis doesn’t meet NICE guidelines, you’re not getting shared care for the meds whether the psychiatrist requests it or not.

Shared care with a private clinician is not cost free. You really need to do more research.

This isn’t true.

it’s not about diagnosis.

GP’s aren’t able to oversee titration, this is the issue. If the person is qualified to prescribe they’re qualified to diagnose. That isn’t the issue with shared care.

I wouldn't expect a reduction, but we all know "the system made an error" is BS.

Hi OP,

I am the clinical lead for an NHS ADHD clinic for YP and I also do some private assessments for a larger company (not right to choose). Never had any issues having reports recognised in the NHS (although you understand the shared care protocol and have this in place already which is great). There is a medication shortage but I don’t think any of my cases have actually experienced this at a significant level. Maybe just where I’m based though.

I think this is really tricky- could you ask the company for their policy on compensation/refunded services for missed appts on their side? It should’ve been in the terms and conditions you signed up to. The issue I’m seeing here is that if it was me as a clinician, and I didn’t consider this to be my error but an admin error of a company that used my services, there’s no way I’d be doing a discounted or free appointment. A 2 hour parent interview is way more than just that appointment. In a good assessment the lead clinician would be working for a day to analyse and think about everything, I can’t afford to do that for less. I would think the only way to gain a discounted rate would be the fee for administrative services.

Good luck!

So in light of all of this, and for what it’s worth no I don’t think you’re entitled to money off - i would however, given how tight things are financially, use it as a solid reason to push for absolute clarity on the cost burden going forwards - so something along the lines of:

‘I was recommended this company and to attend the appointment we had to do XYZ. The impact of having to rearrange with no notice means we have lost ABC.

I am less confident in the service as a result of this - whilst it may have been a diary error in the eyes of the business, it has caused us significant inconvenience. Consequently, I would greatly appreciate it if you could clarify so that there can be no further misunderstandings what you anticipate the next steps after this appointment to be, to ensure that we are able to plan accordingly.

Part of my reason for choosing you as a provider is your success stories regarding shared care - could you therefore please explain to me the timeframe and likely cost implications post diagnosis (assuming a diagnosis is made) to get to the point of shared care, and how this will look for us on an ongoing basis.’

With regard to shared care...
Depending on the age of your daughter she will require medication review appts either 6 monthly or 4 monthly (younger children have more frequent reviews). This is to adjust medication in view of growth and weight and also to monitor blood pressure, heart rate, growth and weight. This is all set out in the NICE guidelines. The drugs given are controlled drugs with known possible side effects of loss of appetite and heart issues. Your GP is unlikely to do these reviews so check with them.
With regards to the assessment just check it will follow NICE guidelines and be ICD10 compliant. Too many parents opt for a 'cheaper' assessment which then isn't accepted by Health or Education as it does not hold up to scrutiny.
I've worked in CAMHS for many years and there is a crisis countrywide in capacity for ND assessments. My Trust is now pushing Right to Choose but even with the private providers there is an 18 month waiting list.
It is awful that families are being pushed to pay privately for assessments or wait years and years for an NHS assessment.

You're probably better off off posting in legal and I've no idea if our get anywhere, but it's probably reasonable to try and recoup any "costs" duplicated:

• if you have the option to buy or sell annual leave, it will be easy to calculate the value of a day
• the childcare for other DC
• travel/parking

Anything else, e.g. missing end of term annoyance, you probably just have to let go.

But I don't agree with pp that it's just one of things when you're paying for a service.

@Bedroomdilemmas113 the last time there was none available in the whole country, I’m currently unable to drive so can’t go anywhere (failed corneal transplant)

this was the recommended alternative drug, both my DC are young adults and more able to cope with minor dose alterations than younger children and are fortunately not at uni for the summer

I think they should compensate your for the inconvenience and a gesture of goodwill, but how were you out of pocket?

We ring (seriously) 50-100 pharmacies each month just to get the meds.

I would do that rather than mess with what they’re taking, we have had to juggle scripts/get them split to match what various pharmacies have in that month, but it’s been possible.

Have they told you she will be diagnosed after that appt? If they have, they’re not following NICE guidelines.

Please don’t listen to the horror stories, we used a private company for DC after the long delay for DC1, I checked that they would be recognised by our Local heath provider ( the Dr was a previous camhs consultant for our NHS trust) we were assessed, prescribed and presented to our local monthly meeting and seen by our community team who shared gp care all in 2 months. Best £1400 ever spent

The real issue at play currently is lack of medication availability, for the last 2 months our pharmacist has been unable to source any of the medication both my DC take under any name and we’ve been forced to use a different medication which has thrown both of them out as its release points and size are completely different

This happens fairly often and happened when they were taking their GCSES and A levels which was a nightmare time

This is the most useful post explaining this I have read.

So many parents approach us about shared care, we now say no to all.
When the assessments came back they were 1-2 hr assessments by a ‘clinician’ of who knows what standing and skill level.

thank you for this post - it’s heartbreaking to see parents put through this.

As a previous poster has suggested, the NHS should be offering you other options if unable to see with certain timeframe. Our wait list exceeded the locally set threshold, and families are offered a choice of attending a private assessment (which we pay for) which is about 30 miles away, or staying on our wait list. Some prefer to wait as they already have an established relationship with our OTs and SLT's and some choose to travel