AIBU to think this BBC response to complaints about the ADHD exposed programme on Panorama is inadequate

[waronadhd]

disclaimer: I am one of the people who has complained.

BBC recently responded to complaints made about the episode of Panorama called ADHD Private Clinics Exposed, where a journalist got diagnosed with ADHD by three private clinics, but not by an NHS assessment done by a consultant.

Their response:
https://www.bbc.co.uk/contact/complaint/panoramaprivateadhdclinicsexposed

AIBU to think this is not good enough? They sent a generic response to a much-complained about programme, and did not address my main gripes with it, which is about factually misrepresenting the NHS.

As mentioned by others, NHS Tees, NHS Esk, and Wear Valleys NHS Foundation all say that an adult ADHD assessment can take between 1-2 hours. Meanwhile North West London NHS Foundation Trust says an assessment can up to 90 minutes. This is not 3 hours, as the programme claims is what is necessary for a good assessment, implying that private clinics fall short of a target that is standard in the NHS.

The BBC also love to mention high rates of diagnosis in the private sector, but there are NHS clinics with much higher rates of positive diagnoses (95% at one clinic for example). Panorama is claiming that this programme has not resulted in any additional stigma for ADHD sufferers, but I don't think this is true at all. There have already been stories online of shared care being withdrawn.

In some parts of the country (Yorkshire for example) you cannot even get assessed for ADHD as an adult at the moment, unless you are acutely in danger of self-harm or harming others. This includes scenarios involving children with ADHD ageing out of childhood services and suddenly losing access to the medication they rely on when reaching 18.

This programme had the potential to highlight all the issues and failures in care that are happening in the UK regarding adult ADHD, in both the private sector and the NHS. Instead it presented a biased report of shoddy private clinics and an exemplary NHS service that is simply a bit overstretched, giving rise to even more stigma and negative attention to a disorder which is under diagnosed in women as is. I think it's depressing that the response to the complaint talks about people not enjoying the programme, completely ignoring the questions about factual accuracy and potential damage caused.

I am in Yorkshire and have an appointment on Friday to see my GP about my possibly having ADHD. I didn't know it currently wasn't being diagnosed.

Except ALL of that is untrue.

The issue is a lack of staff in the NHS, mental health trusts have ridiculous and scary staff shortages; there actually is the funding to expand services but literally can't get the staff. I'm not sure what the BBC are supposed to do about that?

Instead, the only takeaway is that some private clinics are falling short of the standard of appropriate care

I mean yes this is the point of the programme!

but the angle of this documentary is to show a bunch of TikTok videos and implying that they spread the idea that everyone has ADHD, which then leads to people who don't really have problems to pay their way to powerful drugs they don't need.

But this is a big problem. Some people are watching social media videos and nodding along into agreement to some of what are usual behaviours and seeking a diagnosis which some clinics are happy to give them. It is an issue for sure, but I think it's okay to acknowledge that people some are being drawn into this whilst also acknowledging that of course ADHD is 'real' and has a profound impact on people.

There are several issues at play imo, but personally I don't think the doc was harmful, but appreciate some others will.

Because there was SO much help for people diagnosed with autism in the past wasn’t there clarabe1 … before the many different autistic presentations were recognised, those with learning disabilities were just inundated with support.

Take your ignorance elsewhere.

This thread clearly wasn't for you.

Because I do think we need to be wary about private diagnosis, and what benefit there is to to the places doing it. There isn't the same regulation in a private practise as there is in an NHS one. I have anecdotally heard of people being prescribed medication after an hour.....medication that other medical practitioners don't necessarily agree is required. I also think that NHS funding and assessment is woefully inadequate, which is why private continues to thrive in many areas of the NHS

The NHS don’t have the staff. They are expected to be there for absolutely everything and the sheer volume of people has jumped massively that are seeking treatment. A school I’m a governor for at a local primary school has approx 250 children. The school currently have 50 new children who parents have contacted the school about re ADHD and ASD concerns. That’s the highest it’s every been and we are only one school. If this is mirrored across the country I’m not surprised they can’t cope.

Possibly, but it really only raises the question of why this wasn’t done before since it’s been known that this was an issue for years and years. There is a reason why schools are often more reluctant to accept reports done privately than by the NHS or LA EPs.

That’s not to say that all private diagnoses are wrong. But they are generally less reliable than NHS ones because money and reputation are a business incentive.

Sorry this makes no sense without context.

What timescale have parents contacted the school ? This academic year? Within the last two year? Within the last month? Define 'new parents'.

How many of these have resulted in referrals or diagnosis?

How much do the NHS spend caring for the elderly in poor health, or supporting those with long term health conditions, compared with helping the young?

Finally, do.you think confidentiality is important in your role as school governor?

There are several issues with the program.

1. There are already too many ignorant people that think ADHD doesn't exist, it's "naughty child syndrome " etc. , not they can always quote this as "proof". There are a lot of misconceptions around ADHD and it's presentations and very often even professionals (teachers,gps,doctors,SWs,police etc) miss it, dismiss it or are completely ignorant about it. Something like this won't help.

1. It was bound to be biased and an inaccurate view from the point where one side was aware of it and one isn't.

1. It doesn't show the desperation created by long waiting lists, being told it's all in your head, dismissiveness and struggles when you try to go through NHS.

1. "Honest" is subjective, not just that , but details,presentation , non verbal communication etc can make a massive difference .

1. When it comes to ASD for example, some trusts decided not to even consider referrals until complete breakdown (between child and parents,child and school etc) . It's boiling point or nothing. Just because a child and their life/mental health haven't hit rock bottom doesn't mean they don't have ASD. The threshold being too high does not negate the condition.

1. It does nothing to address the "real issue" they were investigating, just creating more stigma, more roadblocks for people struggling , more loopholes for LA's and HCP to get out of providing support to those people.

All in all, it was a shitty thing to do.

I'm sorry but this is exactly why the private clinics also have high numbers. By the time people approach them and are willing to part with £1k, they've often researched and suffered in silence for many years.
The panorama documentary was so so bad. And I'm someone that agrees were overdiagnosing. In both sectors!

This is a really excellent summary about ADHD, I'm trying to copy and paste the paragraph about controversy because I think that's especially good but my phone won't do it.

www.pbs.org/wgbh/pages/frontline/shows/medicating/interviews/barkley.html

I can see that neither the NHS nor education system have the resources to deal with a population that are 30% neurodiverse, if all of those require specialised individual input. There may be an answer but it's not there yet. I suspect it will end up being a menu approach where learning environments have various adaptations and options rather than individual care plans.

I have real concerns that in these types of situations, money talks, and that it's yet another layer of privilege that the middle class is benefitting from to lever resources and advantages for their own offspring.

I say this as someone relatively middle class with neurodiverse children who have a host of conditions which we can't afford to get private input for. I honestly dread to imagine how families with no private resources cope - it's unbelievably hard even with options. My kids have had no special considerations as such but they have had time off school. I've never demanded anything from the school because I'm from a family of teachers and I can't bear to be awkward.

We've not gone down the road of private diagnosis simply because ultimately I feel my children will have to adapt to social norms to thrive rather than be raised with an expectation that the world will adjust to them. I wasn't sure of the benefits of a diagnosis without any support resources. And these don't exist yet really.

They've been in and out of CAMHS with serious mental health conditions though - would that have been avoided or mitigated by acknowledgement or treatment of neurodiversity? Would it have been better and cheaper for society as well as better for them and us as a family? All unanswerable questions now.

It's a really hard decision and I don't condemn anyone taking a different path for themselves and their kids. We as parents are in one giant experiment with our kids, when the pace of change of technology has swept the carpet from under us. This panorama programme is desperately unhelpful in that it supports the fascistic "I'm alright Jack" mindset which Mumsnet seems obsessed with these days (in contrast to the early days where it was much more supportive and understanding I thought)

@RafaistheKingofClay The only reason why LAs don't like to accept private reports, is because reports are what feeds an EHCP. This policy is not legal.
LA EP reports are incredibly woolly and very often spend the majority of the report going on about the child's strengths. We've had 2 of those now and I have seen many others.
This means when the ehc draft is being made, Section F is also not specific because there's nothing specific in the reports. A specified Section F equals an expensive EHCP.
There's an agenda in this policy. Very few professionals would risk their licence to diagnose a child with something they're not confident they have. EPs also by an large conduct standardised testing, there's no way to actually change this result whether it's a private or LA report. It's the fact private EPs make specific recommendations that LAs don't like. At our appeal bearing the judge only looked at our private report. The LA one wasn't deemed thorough enough.

My NHS diagnosis for ADHD took about 20 minutes, I had filled in the forms and he just asked some questions and agreed a trial of meds for me. This was a general psychiatrist and not an ADHD specialist.

@BertieBotts thanks for sharing that article- it’s excellent

Thank you for complaining. I didn't watch the programme but hated the premise of it and the accompanying articles, as if everyone who has got a private assessment is making it up. DD2 (14) has just been diagnosed with a detailed private face to face assessment from a specialist paediatrician with 30 years' experience in the field, and lots of information provided from family and school.

I'm sure there are some dodgy clinics which have sprung up lately but to paint the NHS as the gold standard or say that private diagnoses are rubbish is just nonsense. Plus the fact we couldn't even get a referral to CAMHS, good luck with seeing anyone in the NHS about mental health of under 16s. If we did there would be a five year wait and she would then be too old! And from reading lots of other people's experiences of CAMHS, they vary from great to appalling. We are now trying medication as we have tried everything else for over three years, so to say that people just pop up at an online clinic and get drugs is insulting.

Aha now I'm on the computer I can copy and paste the bit I wanted :)

From linked article above:

There is controversy about ADHD, I believe, partly because we are using a medication to treat the disorder, and people find that to be of concern. But there's also concern because ADHD is a disorder that appears to violate a very deeply held assumption that laypeople have about children's behavior. All of us were brought up believing, almost unconsciously, that children's misbehavior is largely due to the way they're raised by their parents and the way they're educated by their teachers. If you wind up with a child who is out of control and disruptive and not obeying, that that has to be a problem with child rearing.

We can thank Freudian thinking and Watson's behaviorism, and other ideas that are part of our common knowledge, for making us believe that behavior problems are learned. Well, along comes this disorder that produces tremendous disruption in children's behavior, but it has nothing to do with learning, and it isn't the result of bad parenting. And therefore it violates these very deeply held ideas about bad children and their misbehavior.
^^
And as long as you have this conflict between science telling you that the disorder is largely genetic and biological, and the public believing that it arises from social causes, you're going to continue to have tremendous controversy in the mind of the public.

The BBC Rory Bremner ADHD and me programme in 2017 highlighted how problematic it is to get an NHS diagnosis in the UK and spoke of the stigma and lack of understanding in UK about ADHD in adults.

What the panorama programme was highlighting is how the increased understanding of adult ADHD and the inappropriate misinformation on TikTok and other social media has led to an insane increase in people thinking they have ADHD.

And the NHS cannot cope with demand so private clinics have stepped in, driven by money. And ALL experts in Adult ADHD have been complaining for years about how these private clinics or just individual private practitioners have been exploiting the ADHD 'trend' on SM and giving invalid diagnoses and prescribing controlled drugs.

And that needed to be addressed and publicised.

The programme did not cast doubt on ADHD as a diagnosis. It highlighted the reality where ADHD is largely understood and currently promoted on social media, the NHS cannot keep up with demand and money-making private companies are stepping in to exploit all of it.

@BertieBotts what an excellent post.

This is really upsetting. OP good for you that you complained! Rightly so!

I am a mature student and have just been advised my uni mental health advisor to go down the route of getting assessed for ADHD. I have suspected I have it ever since I got with my DP who has it and is constantly teasing me (good naturedly) about the very obvious ADHD symptoms I have. Luckily I'm at uni so can go down the DSA route to getting diagnosed as I don't think I would bother even trying with the nhs route.

It's so upsetting that these sort of programs seem to point fun at the fact that this is actually a real issue that effects peoples day to day lives tremendously. There is soooooo much stigma around ADHD being basically made up and it seems to be a very misrepresented mental health problem. I myself have been diagnosed over the past ten years with; depression, then anxiety, then borderline personality disorder, then paranoid personality disorder, then bipolar.... all of which never really suited what my symptoms were which is why they kept changing their minds on what they thought was wrong. Now I've finally had two mental health professionals that work with people with ADHD suggest that it seems very likely that that is actually whats wrong and it makes so much sense to me now. It's so upsetting that doctors don't even think to venture down this route and are so quick to slap other labels on because they can't imagine ADHD would create any 'serious' symptoms, and god forbid a anyone suggest a woman might have ADHD.

I'm so glad I missed this program, I think it would have made my blood boil.

@Colourfingers2 I wonder if it's all a government conspiracy then seeing as they can successfully diagnose ADHD through MRI scans.. they must all be in on it!

@Colourfingers2

which drug treats personality disorders please?

While I don’t believe that ADHD etc were invented to fuel a drug market, I do think that we need to start questioning why there is such an increase of ADHD/autism etc in society. Because while there were undoubtedly people with these conditions before diagnosis became a more common thing, the fact is that everyone seems to now be seeking a diagnosis. So what is it that is fuelling this apparent increase in neurodiverse conditions. The environment perhaps? Something else?

We need to ask why, because haing something in our environment for instance which brings about a. Higher instance of neurodiverse conditions needs to be seriously looked at in order to prevent the cycle.

Because the number of people now seeking a diagnosis has changed. And our response to behaviours has altered. It’s no longer acceptable to consider a child to be naughty or just lively, we have to question whether they have a disability.

We’re going to reach that point soon which genuine.y autistic people fear, where actually, everyone will be considered to be on the spectrum.