Are ADHD waiting lists ever going to improve?

[MaddenA]

I've been told I could be waiting 7 years. Nearly bought medication a few months ago but panicked when I read about possible side effects so bottled it. Moment of madness. I'm desperate. How can it take 7 years for an assessment? I wish I could afford private.

We had to do this for grandson... cost 1200. Well worth it tbh.

I work for CAMHS (now known as CYPMHS (Children and Young People's Mental Health Service) in large northern city. Current waiting list for ND assessment is 10 plus years. Lots of factors for huge increase in referrals - schools insisting on diagnosis, parental awareness, pandemic highlighting symptoms for families, self diagnosis etc. There are over 2k of referrals yet to be triaged and then put onto the waiting list. The situation is dire and funding is a massive issue and will get worse as the NHS trust has been told to make huge savings.

If going down private assessment route please, please make sure assessment is robust and follows NICE guidelines and will be accepted by NHS and education etc. Families are paying for sub par assessments which then cannot be accepted by the NHS when requests for ADHD meds are made. ND assessment for both adults and children is a huge problem and crisis in the NHS currently.

The vast majority.

Essex and partnership university trust published their diagnosis rate a couple of years ago in response to a FOI request: 95%

https://eput.nhs.uk/media/dzzk021d/eput-foi-22-2575.pdf

There is screening to get on the assessment waiting list. Given such high conversion rates it’s almost certainly far too severe and still the waits are scandalous. The issue with ADHD assessment waiting lists is a lack of capacity, not horrendous numbers of chancers.

You clearly have no idea what ADHd really is

They don't, I started a thread about it the other day:
https://www.mumsnet.com/talk/_chat/5035931-do-you-know-anyone-who-paid-for-an-adult-adhdasd-assessment-and-was-told-they-dont-have-it?reply=134033230

More people getting an autism diagnosis will be impacting lists too. Myself and my children were referred for adhd diagnosis by the nhs after they did our autism diagnosis as traits showed up during the process.

Private clinics are fine when they run along the same lines as NHS clinics. You really ideally need face to face appointments and a QB test (not the less detailed ‘QB check.’

You need a psychologist or medical doctor involved.

There is so much ill-informed and downright insulting bullshit on this thread. ADHD is a debilitating condition which can cause incredible difficulties for people.

There are lots of adults getting diagnosed because we have more awareness of ADHD and how it presents and people are seeking answers for their difficulties.

This is especially true for women.

Yes there are people watching TikTok content and deciding they have ADHD because they're a bit disorganised but what I've read here is such crap.

Having a late diagnosis is very difficult and confusing. You start questioning everything about yourself and some also feel embarrassed about sharing their diagnosis because they know that people will be judging them and assuming they're desperate for a label.

Fucking bullshit.

I think adult diagnosis can be very self-validating as imposter syndrome high and it will aid the person to stop questioning themselves all the time. If it was any other condition, you’d get diagnosed. Especially with all the ignorance that abounds as seen here and in the media. “We’re all a bit adhd” etc. No, no we’re not. We’re all
forgetful at times. Or anxious. That doesn’t mean we have what can be a very debilitating condition.

I want to tell people about our diagnoses but the ignorance means they often glaze over or show a lack of comprehension when you mention it. Family will Google it and then bring up the usual rubbish online about it being made up etc. So we can’t talk about it with them. It’s pretty shocking when you consider that. It has led to us being distant with them and friends. Again, another sad impact.

It’s also helpful for the partner of the person to know their loved one has a condition. As someone said here, it can influence how you engage with the person and can make certain behaviours easier to manage. More needs to be done to get people the diagnosis they need.

I’m sure it suits Tory rhetoric to blame self diagnosis instead of better diagnostics, better awareness, underfunding and Covid fallout.

For me (a late in life diagnosis) there was 1) a huge desire to try the meds and see if they help me with the memory and motivational issues that have plagued my professional and personal life (they do) and 2) an explanation for the absolutely insane things I've done over the years, despite being pretty successful and reliable on paper. Realising that huge impulsiveness is part of my make up has actually helped me rein that part of me in.

To add, my elderly mum is absolutely undiagnosed adhd herself - not even slightly masked - and it's helped me understand some of her more difficult behaviours over the years.

Buy a private assessment. It doesn’t have to be in the UK. A friend of mine got assessments done for herself and her entire family while on holiday in Spain.

The pp has a point about screens. The attention element of ADHD is one that lots of people feel they can identify, particularly for their children. The rise in screen use means attention levels in schools are atrocious, so when teachers raise this, parents then have concerns that this may be an ADHD issue and many go on to seek further assessment via the GP. It is obviously not always that they do have ADHD, it is 'just' an attention need.

This is such a frustrating, myopic view of the situation. It benefits the powers that be though doesn’t it!

Don’t blame us for the NHS, blame greedy people having the audacity to make a GP appointment. Don’t protest supermarket price gauging, fight amongst yourselves and blame those complaining when you could survive perfectly well on bread and water. Blame failures of the NHS mental health service on the people getting referred for those services…

as to OP, is ridiculous and it’s not just affecting ADHD. You can use Right to Choose for an assessment - it took me a year from assessment to diagnosis and then a further 4 months to titration. Much better than the 3 years I was initially quoted.

Not just screens. It’s normal for young children to want to run around and not sit down. In private schools this is mitigated by having PE and sports everyday (sometimes more than once) & by combining academic subjects with PE

See, this is the sort of thing I despair of

But then you need the meds.

And only a pysch can initiate the prescription.

I paid for a private assessment from a company that is ratified by NHS, which means you can transfer to shared care - GP creates NHS prescriptions (saving you a small fortune) and you have to pay for clinical checkups twice a year privately (a few hundred pounds.

Seriously, I wish I had known to do this decades ago. It has changed my life.
The assessment cost about £800 - which is a lot, and yet nothing over the course of a lifetime, if it leads to a future without the exhausting daily battle with ADHD. There was a 9 month waiting list even for the private assessment. If you can find the money, book with an NHS recognised clinic (happy to PM details of mine). My argument was - we find money for holidays, Christmas and birthdays so why not my day to day health? And ironically, I've been able to increase my working hours already, as I am so much more focused and energised. I suspect it will pay for itself pretty quickly.

Many Spanish psychiatrist prescriptions are recognised in the UK (some even work for the NHS). Just need to find the right person.

How do you buy meds? Even with a prescription I’ve had months long waits but can’t find it anywhere

Pretty sure I have undiagnosed ADHD, I work in mental health and several colleagues (including clinical) I work closely with have mentioned it as a possibility (probably too polite to say likelihood!).

I've not persued a diagnosis because I have had the pages and pages of forms sat there for ages and still haven't been able to complete them 🤦‍♀️

I have heard so many people saying they think they have it and listing off a load of random reasons that don't sound like adhd at all. It's frustrating.

But you're guilty of this too. You think other people are making it up, because they're not affected the same way or as bad as you are. You don't believe them, in the same way you're scared you won't be believed.

ADHD can affect two different people very differently. One person might have extreme issues with memory, another person's worst symptom could be their RSD, another could be executive dysfunction, another could be lack of focus.

There's no right or wrong way to have adhd. people may be less or more affected than you. It doesn't mean their struggles are less valid than yours.

I can't stand it when people gatekeep adhd and just assume everyone else is making it up because other people's experiences aren't exactly the same as their own.

I'm diagnosed with adhd. It doesn't make any difference to me if the next person also gets a diagnosis or thinks they have it. I'm happy for them if understanding adhd means they can make sense of their life.

I very strongly suspect my DH has ADHD.
he hates most tech and spends less time on a screen than most people I know (in fact it is a bone of contention that he "hasn't seen" because it doesn't occur to him to check any emails to do with school/kids/work etc)

I feel like he "zones out" during most family meal times. We can have the same conversation 3 days in a row as if it is new info. DC used to get upset that he literally had no idea at all what they had discussed at the dinner table and he would get defensive about it. Even stuff the rest of us have had complete hysterics about. Now I've read and (tried) to understand more about it, some of the things that can be frustrating, make more sense in context.