To expect some reimbursement for this private app

[Flyingwiththekids]

We are going private for an ADHD assessment for our daughter, due to a five year nhs waiting list. We are clearing out our savings to pay for it as the GP and school have told us she will benefit from medication, she is really struggling at the moment. We don’t really have another option as she currently can’t do a full day at school because of her symptoms.

so we booked the app, husband booked the day off work, my daughter missed her last day of school, I chased the school to fill in their end of the paperwork and filled in my end. We turn up and the clinician isn’t there. Receptionist chases the doctor. No response. We keep asking, keep being fobbed off. Two hours later our appointment slot is over and the receptionist apologises but says she’s not sure what’s happened. Tells us to go away and write an email to explain what’s happened. I said I wanted to speak to a manager and my details are passed on and he gives me a call. He said he will ‘sort it all out’, and apologised, then the private consultant calls me and apologises and explains the system made an error so didn’t book it on her calendar and she’s rebooked us for a few days time.

Ive emailed and asked for some compensation for the error. The appointment cost us a significant amount of money. We booked with this company because they have glowing 5 star reviews, but feel all of the inconvenience is worth a part refund?

Absolutely agree with you. If I fail to attend my dentist appointment I would be charged. You attended, they messed up so yes you should receive some refund for this. Whether you will might be another matter but fight it. They will hope you will give up but don't. It's so hard to get these appointments.

I caused a somewhat similar situation as an anaesthetist and I waved my fee. It was a fairly small amount of the total cost though.

I know plenty of others who wouldn’t have though. It depends a lot on the individual and what they feel led to the scheduling conflict.

GP can only enter shared care if you pay the costs of private clinician overseeing titration. That’s expensive.

For anyone looking at trying to get an assessment read this NHS Choice Framework - what choices are available to you in your NHS care - GOV.UK (www.gov.uk) - you can choose a provider for your first outpatient appointment and change from a referral one provider to another if you are having to wait over 18 weeks. The provider has to have a contract with the NHS but your Integrated Care Board can give you a list and you can choose the one with the shortest waiting time.

Has the GP agreed to shared care specifically with who you are going private with. Someone I know has recently had this issue, was told they did shared care then once the diagnosis and a couple of months of meds was provided for a lot of money by the private company the GP said they didn’t accept shared care with that company so now they are stuck with spending hundreds a month on the medication or another few grand on the company the GP will accept

Don't be daft. You paid for a consultation, you're getting a consultation next week. Mistakes unfortunately happen.

They can’t/don’t ‘not accept’ a company.

What they don’t accept are private diagnoses done that don’t follow NICE guidelines. Any which you google and are offered video conference diagnosis appts for children for example. So they by default won’t accept diagnoses from that company but it’s not the company it’s the lack of following the correct guidelines for diagnosis.

This then gets re-told in this way by people (I have a friend who the same thing happened to) without them understanding or making clear exactly what happened. It’s not a lottery where GP surgeries pick whose diagnoses they’ll listen to, it’s to do with the way the diagnoses are carried out.

Much shorter way of saying what I said.

This is what you really need to be mindful of from a costs perspective OP.

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

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.

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

thanks for your reply.

We were told about right to choose, this still has a long waiting list. We are at breaking point so can’t wait.

Could you let me know who you went with? You can pm if you’d prefer.

my GP has agreed to share care with anyone who follows the nice guidelines and is a qualified clinician. The company we have used claims to be both and the doctor we booked is a specialist in children’s adhd. But I’m thinking it might be worth looking elsewhere based on the issues we’re currently having.

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

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.

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

Loss of a days annual leave and now having to book another days annual leave for the reschedule appointment.

No they haven’t told me anything yet. Just that they share care agreements with over a 1000 GP’s successfully and our GP has agreed to share care with a qualified clinician.

@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

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.

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.

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.’

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!

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

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.

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