Adult ADHD - agonising wait for titration - please help

[kokomako]

Hi

I was diagnosed with ADHD in November 2023 following a long and horrific ordeal with my local CMHT. They have "lost" my case/details on two separate occasions which has caused severe delays. I had my initial CMHT appointment in Dec 2021 with a nurse practitioner but then didn't hear anything for months, I rang in July 2022 for an update and was later contacted to say that my application had become "lost" in the system - apparently the original nurse practitioner hadn't completed the correct forms so I was supposed to have another appointment but it was never arranged. So I was assigned a new nurse practitioner and they had to start a brand new case. That nurse practitioner was great and managed to argue with the powers at be to get my place on the waiting list backdated to Dec 2021 as it should have been.

At some point between 2022 and 2023 I was assigned a clinician at the inpatient mental health hospital and had an appointment with her in May 2023 where she told me I needed to go home and complete some forms. (They actually were the same forms I completed in 2021 which they had obviously lost, but I digress). I completed all the forms & returned them via email in early June 2023. I was told by the clinician over the phone that my diagnosis and subsequent titration would all be done in 4-8 weeks.

When I rang in August for an update having heard nothing from them I was told by a receptionist that they were still waiting for my forms, to which I responded that I'd sent them via email in June. A few days later my clinician called me to say that my email had "slipped through the cracks" but they had located it after my call and were now progressing my case. However it was around this time that the methylphenidate shortage was causing problems and they told me my titration wouldn't begin until December.

By January I still hadn't heard anything from them, rang for an update and they said my titration was now delayed until April due to the ongoing shortage. But that I would be contacted in April for an appointment. This tipped me over the edge and I ended up submitting a formal NHS complaint about the errors made in my case and the delays. The CMHT eventually responded apologising for the mishandling and said "Medication appointments will be offered once the supply issues have been resolved."

I rang the clinician on Tuesday 16th April for an update and she told me I won't be having an appointment in April because apparently titration has been "approved for children but not for adults" and to stop contacting them because they will contact me when an appointment is available. She was extremely curt with me and showed no compassion whatsoever, which tbh, wasn't present before I made the complaint but I think the complaint has made it even worse and I'm probably hated within the team. But foolishly I thought complaining might have sped my case up.

AIBU to think that this entire thing is ridiculous? The timescales have been pushed back so many times and every day waiting is like a living hell. My case is severe - I genuinely struggle to function on a daily basis. I can't complete tasks and I had to leave a well-paid job as I just couldn't cope. I've since taken up an agency job but I am struggling with that as I have to do 37 hours over 4 days and I really struggle getting into work on time. I also lost my Mam very unexpectedly 4 weeks ago and since she died I've found that my symptoms have been even worse than they've ever been before. I can't focus on anything I need to do.

Also, I applied and was rejected for PIP due to a lack of evidence. I emailed the clinician in December to ask if she could give me written confirmation of my diagnosis as I was only given my diagnosis by her over the phone in November. My email was ignored so I actually have no concrete evidence of my diagnosis. I should've mentioned it on the phone on Tuesday but the call was really rushed and I was so upset that I forgot to ask.

These are the questions I have that hopefully someone will be able to answer:

1. if I contact my GP will they be able to provide written confirmation of my diagnosis - maybe they can check medical records and print them or write a letter?
2. if I obtain written confirmation of my diagnosis would I be able to take this to a private psychiatrist for them to commence my titration? To be honest I don't think I can even afford to do this but I want to know what my options are.
3. Is there anyone within the NHS I can contact to ask about this "titration approved for children but not adults" thing? I am suspicious about it as I have read on ADHD forums about adults starting titration with the NHS in the last 1-2 months so wondering if it is specific to my trust, and if so, why. I would like to know the clinical reasoning behind it. IMO the consequences for adults of not being medicated are far worse. Children have the support of parents. Adults have nothing. My finances, physical health and relationships have all been completely destroyed by my ADHD. I am in a huge amount of debt from when I had a breakdown last year and gave up work and I am still not earning enough as I need to be due to my condition.
4. after my Mam died I was off work for 3 weeks as I physically was unable to go into work. I tried twice and ended up getting sent home because I couldn't stop crying and couldn't function. However since I'm agency I'm not entitled to bereavement pay so I took the first two weeks as unpaid. Third week I got a fit note thinking I could claim SSP for that week however apparently you don't get paid for the first 3 days so I ended up getting paid £39 for that week. As a result it was absolutely essential that I Returned to work this week but I was still really struggling. A close friend of mine who also has ADHD and is medicated (privately) gave me 14 methylphenidate tablets (Concerta 27mg). I took one on Monday and it was an absolute lifeline. It completely quietened the millions of thoughts that are flying around my head at any given moment. I was able to get ready, get into work on time and do my entire shift absolutely fine. I've taken one today as well and managed to get housework done that I haven't been able to do in months. After my mam died I was so unable to function that I couldn't even do laundry - I resorted to wearing dirty underwear inside out the day after as I had none clean. Sorry if that's TMI, but that's how bad it is. My friend giving me the methylphenidate is obviously a one off due to the fact I was at rock bottom but I intend to use it on the days I need it most over the coming weeks.

However as I understand it they begin titration on 5mg or something like that. By the time I start titration I'll have taken all 14 of the 27mg methylphenidate so the 5mg isn't going to have an impact on me at all. Is it worth me telling the CMHT about this so that they can tell the prescriber who might take that into account and start me on a higher dose. Or will that just get me in trouble?

Have you started on meds? I was diagnosed last June and was told titration began when I started taking meds (which was September). It's the period whilst they monitor the meds you take and adjust them until they find the right dose that works efficiently.

I have my first review next week when I expect them to up my dose as the current has no effect anymore.

My understanding that the wait for the assessment is not titration, it starts when you begin taking meds.

I had a nightmare waiting for my assessment too, with lost emails, etc. Luckily (or not), I'm under EIP so they expedited it after 18 months of being lost in the system.

Hi @OldTinHat - sorry, I think I may have used the term "titration" incorrectly. I think some people use it colloquially describe the commencement of medication.

So no, I haven't started on any meds yet. After I sent the complaint they invited me in for an ECG/medical in January to make sure all is okay before they put me on the meds and everything came back fine. Just waiting for an appointment to start meds.

So pleased your case was expedited and you managed to get on the meds. Have you found that they've helped you? xx

This is why there is such a long waiting list to get diagnosed

I live in one of the the quickest areas in the country and the one thing they do to speed up the process is as soon as the psychiatrist says you have been diagnosed he takes you there and then to get your weight,height and blood pressure done by one of the nursing staff.
After you are returned to the psychiatrist to discuss meds and providing that your blood pressure is ok you leave with a prescription

There is no separate appointments for blood pressure
Not separate appointment to discuss meds

I have just found out that the NHS constitution for England states

"You have the right to:

• start your consultant-led treatment within a maximum of 18 weeks from referral for non-urgent conditions"

Can I apply for my case to be expedited on this basis as my diagnosis was provided on the 14th November 2023 which is 22 weeks ago?
If so, can I get my GP to do this?

I am also considering emailing the consultant psychiatrist for the trust if the GP can't.

It's refreshing to hear that at least some Trusts know what they are doing. Why isn't the process standardised across all Trusts?
The entire process at my Trust is inefficient and illogical. They keep blaming the delays on the medication shortage but the reality is if they hadn't repeatedly lost my data and made me attend pointless appointments to provide information I've already provided then my case would have been resolved before the shortage began. Also, I had my ECG almost 5 months ago and am still not medicated - by the time I'm medicated it could be 6/7/8+ months since my ECG, so the ECG is essentially redundant?

I don't know where you are but I am in the North East and imo the trust is just not fit for purpose. The hospital I go to is infamous for patients dying / ending their lives whilst in inpatient care there.

kokomako

I think certain NHS hospitals do things that work and you wonder why they are not done by everyone

Last year I had to go to A&E in a different area. Pure accident, knew I might have broken a bone.

Limped into A&E and my heart sank. There were so many people.

Registered at the front desk then instead of sitting and waiting (usually 3-4 hours in my local A&E to then get a nurse who goes over what is wrong and then wait another 3-4 hours for a doctor to decide what to do) I was directed to a desk to the side of the waiting room where a nurse typed in my details and what had happened and what I thought might have happened.

As i thought i needed an X-ray to see if i had broken anything that was where i was immediately sent.

Xray done pretty promptly and back in the waiting room I had about a 20 minute wait to see a doctor with the results and within an hour I was out the door with crutches.

The nurse I saw immediately after booking in funnelled people from what I could see into different areas. Urgent problems, were immediately taken for treatment. Those that knew what was wrong were sent for any tests etc they needed immediately and those that didn’t know were seen and then sent for X-rays/blood tests etc.

There was a doctor who seemed to be in charge of making sure patients were not waiting around and had all the appropriate tests before they saw the doctor.

It was the only A&E dept I have ever been to where I didn’t feel that time was wasted

It’s the only time I have ever been asked what I thought was wrong and my answer was acted upon immediately

Why can’t other A&E departments operate the same way.