No support for adult ADHD

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My partner has ADHD and autism. A few months ago my partner went to a few meetings with a local autism and ADHD service, I went to 1 meeting to take notes as I booked the day off work.

They said they will help support him with employment etc as he is temporarily off work due to illness and was a carer for his mother. They kept pressuring him in the summer to take their medication. He took it and had a very bad allergic reaction and it made him very ill. They kept phoning telling him needed to go back on it.

He wanted to some employment support this week and now they are saying they won’t support him as he refused medication so is no longer a patient. I have seen the email. I feel sad that because he won’t take medication because it made him ill he is being penalised. I keep hearing more about services not supporting people with these disabilities.

Are there any other services who can help or is this a funding issue everywhere? Thanks.

It seems odd that they would try to force him to take medication to which he had had an actual allergic reaction? Was the allergy confirmed by a medical professional, or is this just how he has chosen to interpret an initial bad reaction to the medication?

Lots of people do struggle with medication initially, and it can take a while to get the dosage right, but that's very different from an allergic reaction?

Medication does make a huge difference to adhd - probably more than anything else tbh - but not everyone can take it. I am no longer able to take it unfortunately.

What sort of employment support is he looking for? If he had an actual allergic reaction, could he get his doctor to certify this and then go back to ask for the support that he needs? Could he access an alternative medication instead?

He tried the medication for a while then told the doctor about the side effects who told him to stay off it.

He wants to get back into employment and they said they would help attend appointments etc.

I will help him get into employment as he is very intelligent and just needed some support. I know I can help him get something decent and not be written off or ignored by an autism service.

OK. So a bad reaction rather than an allergy maybe?

This is very common and it's surprising that the doctor just told him to stay off it and didn't offer any other support. I would be inclined to push back on that, personally. I speak from experience - it is really hard to manage adhd effectively without medication, though some people do have to and others choose to. But it doesn't sound like he should be giving up on the option just yet.

Who is offering the support service, exactly? Did he inform them that his doctor had advised him to stop taking the meds? It seems odd that they would advise him to ignore medical advice.

What sort of help does he think he needs to get back into employment, exactly? Not asking in an arsey way at all, just in case that's how it comes across. Just wondering what sort of help he feels he needs in case there might be other things that we can suggest that might help. Does he know what kind of work he wants to do? Does he have relevant experience/transferable skills? Which aspects of job hunting is he struggling with, and what sort of help was he hoping that the support service might provide?

So he wasn’t allergic, just bad side effects. Two different things that matter here.

Was they told the GP told him to stop taking them
due to the side effects? What did they say? They have many different adhd medications so did they offer a different type? Did he refuse?

Who is this mob that are telling him to take their medicine? Are they an organisation funded by the private sale of their meds or something?

It’s an NHS department. He told them a few times how ill he felt and they was not bothered at all. They just said medication is the only way to sort it. I suspect the nurse probably gets a bonus for getting people on medication like GP’s do for administering vaccinations.

Ah, the conspiracy theories come out. Do you honestly think that HCPs get bonuses depending on how many patients take medicines?

Sometimes medication can take a while to work, there are different medications and dosages that can be implemented but he would have to be engaged with his providers.

IPS can help people with MH issues find employment, you don't need a referral you can research them online.

Wish was true!! Ka-ching!!🤣

Which medication?

Sorry Op - but what a load of bullshit. 😂

Absolutely! I could retire......

I’ve recently started Adhd360’s medical. I was on Elvanse. Started at 20, then 30 then 50mg. I was fine on the first two doses but within a week of going to 50 I was in a terrible state, hyperventilating, hysterical, seeing conspiracy theories etc. I was on a cruise ship at the time in the middle of the sea and the gp on the ship reversed I come off it or risk being medically evacuated out in a helicopter! Within 3 dates I was back to normal. Got home yesterday and spoke to my adhd dr and I’ve been swapped to medikenet to try that instead? Could be worth requesting a different type.

So he had side effects not an allergic reaction. If he's going on about allergic reactions no wonder they are saying he won't engage. 2 totally different things.

I've a severe mental health condition and have been on countless meds. Some have done nothing, some I have side effects form and some have been fab. But the key point is, I went back each time and explained how I felt and they adjusted the dose. He had to engage with services to get help. He can't cherry pick what he wants from them.

(as for employees getting a back hander for a patient successfully taking the meds 🤣they wish! Wouldn't have to work 70 hour weeks then!!)

What are the criteria for receiving the support? Presumably they aren’t “service users must be taking medication in order to qualify” (and the NHS does not get bonuses for prescribing medication) so is it that they have given examples of where he hasn’t engaged with support already offered and therefore doesn’t meet the criteria for next steps?

What support is he requesting to help him into employment? There are services available, and you might benefit from looking here for options in your area: https://www.turn2us.org.uk/get-support/information-for-your-situation/getting-into-work/uk-and-multiple-nation-wide-schemes
Ultimately whether they can assist will depend on what he’s seeking. Does he struggle to write a coherent CV or application form and require coaching on that? Does he struggle with timekeeping and need techniques? Can he attend interviews with adjustments? Support for adults with ADHD does often require people to have a level of insight into their difficulties and identify adjustments they personally think would benefit them.

Thanks to those who provided helpful solutions and personal experiences.

I am in Ireland so we do not have the nhs we have the hse here but I assume it is similar but nowhere have I ever gone to a support place and been told to take meds in fact my psychiatrist actively tried to talk me out of taking meds last time I was with him and he offered alternatives but absolutely nowhere tells you they will not support you if you are not on medications.

That said if you are sure this is what they are doing then get him to agree, get the meds posted or collected and just DONT take them they will never know.

he just needs to try different drugs till he finds one that works ok

What side effects were the problem? Lots report not liking how the meds make them feel, eg “not like myself”, “like a zombie” or whatever but the thing is that they just need to take them because their way (ie no meds) hasn’t worked.

It could be that a slightly different one is better. What he needs to do is go back to his gp and tell him the situation and try and get a different prescription or a re-referral.

As for bonus it’s true that in the uk gp’s get money for referrals (and perhaps other things i dont know) for example a smear test referral got them £30. Not sure of the rates now but it’s a thing.

I imagine that while the healthcare staff dont get anything it could be that the gp that referred him got something financial, and the stats the organisation keep about meds and successful job placements would look better if people who don’t get with the programme aren't counted so they want people that don’t fully engage off to keep the stats looking good…

There will be other medications he can try.

Access to Work are supposed to help with ADHD.

He could also look at support charities like ADHD UK.

It doesn't make sense for a service to refuse help unless he's on medication, unless all they are is a medication titration/prescription service, in which case it makes sense that they would stop seeing him if he does not want to continue that process. These do exist, so I wonder if he's got the wrong end of the stick somewhere.

What kind of help is he actually hoping for? IME, child or adult there isn't a huge amount of support offered after ADHD diagnosis. Research shows that a combination of medication, psychoeducation and therapy is the best combination for ADHD. (Therapy for adults is usually CBT whereas therapy for children could be OT and/or parent training).

CBT offered by the NHS is not ADHD specific, they just refer you to the standard CBT service which is usually 6 weeks. Psychoeducation is limited to a leaflet if anything at all. I would recommend that he starts looking for the info himself in whatever format he prefers - there are books, audio books/podcasts, self help groups or peer support groups, and videos although the quality of video information for ADHD on social media streaming platforms varies hugely. How to ADHD, and Russell Barkley are some good YouTube channels to try.

Following on the Access to Work comment, I've just used that service.

The jobcentre put me in touch with the Shaw Trust who help people back into work but rather than do any job, they work with you to what you want to do.
The employment specialists that I worked with totally understand neurodiversity and they put me in touch with a charity call Reliant Care which is based in Rayner's Lane and is a great facility for Nd people who may struggle with corporate environments.
I've always worked in administration and I've always been great at getting jobs.... Keeping them, not so much and generally because I don't fit in and/or haven't quite got to the standard of work required. Now I know it's because I live with ADHD and although I'm not autistic, I have many autism traits and Im not really suitable for the office environment.

Access to Work assessed my needs and approved the grant needed for me to start my job and get the tools I need to help me be my best.

I hope you guys can find something like the Shaw Trust because they are so good.

Don’t be so ridiculous! He would have been under the service that is there to provide medication, and if he chooses not to take it for whatever reason they can no longer help. It’s not a support service as such.

Yep, @Soontobe60 is correct
the NHS adult adhd services are about assessment / diagnosis / medication / optimising medication / referring back to GP

what support are u looking for ?
if not medication, this service is not suitable
employment support - Access to Work
Adhd resources / info - adhd uk Additude website
mental illness - nhs talking therapies
social functioning - ask GP about the social prescribers

work out what your problem / need is, and take it from there

it’s quite difficult to hear people say ‘ there’s no support’ when not being very clear about what they actually looking for ??

That's highly unethical. If someone doesn't want medication, for whatever reason, it shouldn't bar them from alternative treatment or support. I would query this, and take it higher if you don't get a satisfactory response with the first line of enquiry.