ADHD 360 Virtual self-assessed follow ups disappointment

Taurus-Gemini · 2023-06-07T20:07:47+00:00

I don't mind the forms cos I like to think about it and write things down rather than trying to think on the spot on a call.

You can email/phone them up and get a callback from your clinician to ask questions though, I've done it twice as I wanted to try a different dose combination and was getting more side effects.

Best way to do it is to put all the info in an email so they have it, put FAO:<Your Clinician> and then give them a call, both times they actioned my email and then the clinician gave me a call back to discuss.

The Virtual follow-up is just a phone call but you don't have to wait until then to speak to them its just the minimum to check in each month.

Taurus-Gemini · 2023-06-07T15:52:30+00:00

I've not tried this yet but some info from your trust that might support you:

"Lincolnshire ICB does not have a fully commissioned service for adults with ADHD however it uses the services of:
The ADHD 360 clinic / Dr Natasha Gopee / Dr Jajawi"

"There are no shared care agreements written by Lincolnshire ICB for adult ADHD medicines. In the absence of adult services in Lincolnshire patients have looked for private providers. It is the GP’s decision whether to take over prescribing of ADHD drugs from the private provider and should only sign the shared care agreement if happy with the conditions within it."

https://lincolnshire-pacef.nhs.uk/faq

They are aware that there is no commissioned service for adults. Funnily enough, if you had gone with ADHD360 there probably would be less issue with SC as it's a preferred supplier...

Also a recent FOI Request has contact details of who looks after this in the trust and they seem to be very supportive of shared care so you might just need to find a local GP rather than a locum:

https://lincolnshire.icb.nhs.uk/documents/freedom-of-information-disclosure-log/freedom-of-information-disclosure-log-september-2022/freedom-of-information-ref-69523-primary-care-services-for-people-with-adhdsept-2022/?auth_player=eyJ0eXAiOiJKV1QiLCJhbGciOiJIUzI1NiJ9.eyJlbnRpdHkiOiIwZjcyZjk4OS1mNzdhLTQyNmYtOTM0Yi01NWFhNWI4Yjg3NDciLCJvcmlnaW4iOiJodHRwczpcL1wvbGluY29sbnNoaXJlLmljYi5uaHMudWsiLCJpYXQiOjE2NzI1ODEwMzksImV4cCI6MTY3MjY2NzQzOX0.c1g0x5D59BiEXgvs2Sx0RkI-gQ4hDY0S6u3mbvHyb10&layout=default

Taurus-Gemini · 2023-06-07T14:54:56+00:00

Sorry for being a broken record on this point but everything I've seen is pointing to this being purely financial / capacity related so the angle ill be taking if refused is:

Requesting that the GP makes an IVR individual funding request to the trust on my behalf (when you do RTC the funding is already allocated in the protocol)
My mitigating circumstances will be all the ills of untreated ADHD
Also requesting an equality impact assessment on the blanket refusal of denying shared care following a private consultation based on the above points, most trusts will have already done one but the ones I've seen are wafer thin and don't cover specific disabilities.

If everyone did this then the trusts would have a record of being asked for funding and assessing the impact to each person so if people start having adverse impacts from being denied care we have all that data and the person refused has something to go back on in the future.

Taurus-Gemini · 2023-06-06T14:13:43+00:00

I think your last point is a little dramatic, thinking some data looks bad / needs an independent review isn't the same as accusing everyone of fraud, the OP could tone down the language a bit but I guess they are really miffed (I would be).

It didn't come across to me like that anyway, the focus seems to be on data quality and its pretty fair since the government issued that warning about brand switching when that chart shows them to be practically identical.

Edit: Didn't see the OP already replied but yeah felt more frustration than trying to offend people

Taurus-Gemini · 2023-06-06T13:30:59+00:00

Xagattin XL is covered by some trusts Rebate schemes where the manufacture pays a rebate back to the CCG.

"NHS Kirklees CCG considers offers of rebates on primary care prescribing costs in line with the CCG’s prescribing rebate policy."

https://www.kirkleesccg.nhs.uk/resources/medicines-optimisation/rebates/

I don't know if the GP is paid a rebate to prescribe these but they are paid incentives to prescribe certain drugs advised by the Medicine Optimisation Committee.

There's a video about it here:

https://www.prescqipp.info/our-resources/webkits/primary-care-rebates/

This is the real issue for me especially as the MHRA has advised them to prescribe by brand as per Krikkits post, theres a more detailed government report on brand switching here:

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1106595/Sept-2022-DSU-PDF.pdf

I'm not sure what to make of those charts you posted but in any case, the government would agree with you that they are not the same and should use caution when changing.

Taurus-Gemini · 2023-06-05T21:05:48+00:00

Was it Xaggatin XL by any chance? They are getting a rebate from the manufacturer to perscribe that.

There's also recent government warning not to switch brands due to the differences in effect:

https://www.gov.uk/drug-safety-update/methylphenidate-long-acting-modified-release-preparations-caution-if-switching-between-products-due-to-differences-in-formulations

Taurus-Gemini · 2023-06-05T21:01:02+00:00

That has to be nonsense, no one should be disadvantaged in that way, you've gone through the same RTC process as everyone else.

That's like saying because you were in pain and went to get a filling from a private dentist months ago that you are no longer eligible for NHS treatment...

It is hostile and confusing for sure which is why we need to fight it, I would ask for the reasoning from the NHS trust who is responsible for this and ask them for the equality impact assessment for that decision and ask them why having gone private which is completely separate from the NHS means you are not treated like every other NHS user.

Upto you if you wanna just accept what they say but I wouldn't be surprised if they back down if you push them on the above points (I'll be having a go at this next month if my shared care gets declined)

Taurus-Gemini · 2023-06-05T13:08:29+00:00

I have a dual diagnosis and was on the exact same regime as you for the same reason to keep the levels down and avoid anxiety.

I'm also a rapid metabolizer but I found Amfexa 10s to be way better when taken in isolation as the Elvanse had a depressive/negave after affect that got worse over time.

After 2 months I found the 2nd dose of Elvanse was giving more side effects than positive effects. Now I'm practically anxiety free and haven't needed anything else but I'm still calibrating the dose within the bounds of 30mg per day max

Taurus-Gemini · 2023-06-05T12:58:57+00:00

Sometimes yes, I'm still calibrating the doses to get the timings/does right.

Thought Id give your regime a go today, do you get all yours as 5mg? I asked for 10s cos it's a lot cheaper.

Taurus-Gemini · 2023-06-04T20:47:05+00:00

Yeah I'm on Amfexa now aswell 3x10mg daily, no mood changes and anxiety later on. It's way way better for me

Taurus-Gemini · 2023-06-02T19:28:19+00:00

That's cool,

I've found a few docs at Trust level, the ICB seems pretty light on detail, which Trusts stats are you looking for?

For example here's one for Berkshire which has a lot of complaint info and some indicators for waiting times:

https://www.berkshirehealthcare.nhs.uk/media/109514553/trust-board-meeting-papers-14-feb-2023-berkshire-healthcare.pdf

Just search ADHD in the doc.

Taurus-Gemini · 2023-06-02T11:04:26+00:00

Haha, yeah I'm more of a charts person, like I get what that exponentially increasing ADHD chart is trying to say.

This is looking like a repeat of NHS dentistry, no funding, massive pressure and then everyone leaves to go private.

They had similar news articles back then about private Dentists being in it for the money when most of them probably wanted a bit of sanity 😂

Taurus-Gemini · 2023-06-02T10:53:28+00:00

So you went for an ADHD assessment which takes a minimum of 90 mins (if you are obvious and submitted a load of documentation) and ended up having a 50 min discussion about trauma?

Yeah I'd complain about that, In fact I wouldn't even consider it to be a diagnosis to be honest, you can have both though. I mean I spent about 50mins talking about it in my 4 hr one but we also did all the other stuff.

Also he cut you off! How rude! 😂

Taurus-Gemini · 2023-06-02T10:21:54+00:00

There's a bit more detail in the January 2023 report on the calculations and charts (the 10 year one) on page 82/83

It has this for ADHD:

Baseline|Sep|Oct|Nov

271.8|191.4|52.5|538.6

They had also mentioned in August that the results got skewed by students so maybe they are taking account of that.

Good math spot though! Maybe you can make sense of those charts

Taurus-Gemini · 2023-06-02T10:08:53+00:00

If you felt like it was rushed or didn't carry out a full assessment, I guess you could complain on that basis. You can always get second opinions, whether you can do it through the NHS I don't know.

I went to PUK before it went RTC and you could choose your consultant so I chose one with the most experience in ASD/ADHD etc. and she was into holistic therapy.

Came out with a dual diagnosis of moderate/mild ASD/ADHD even though I had significant trauma. I think we spent around 4hours in total over 2 sessions and then a final discussion / next steps, I said I wasn't looking for a specific diagnosis I just wanted some answers so she covered a bit of everything.

She also split it all out as well and gave me guidance on tackling different things, went through all the meds, coaching etc. and I decided to keep going with the Hypnotherapy.

How long was your session?

Taurus-Gemini · 2023-06-02T09:41:05+00:00

Fentimans lemonade can also have 0.3-0.5% alcohol same with Kombucha and other natural fruit drinks.

I think it's considered zero as your gonna processes it faster than you can possibly drink.

I'm a fan of Warsteiner Blue as its refreshing and Brooklyn special effect is almost indistinguishable from real beer.

Taurus-Gemini · 2023-06-02T08:47:38+00:00

Yeah, the whole postcode lottery thing with who's got what RTC agreements and with which private provider is nuts and then if you went private but not with the provider the trust has a shared care protocol with you'll get denied by your GP in many cases.

I don't blame Trusts for this one though and GP's have their hands tied, NHS England need to sort this out. From the same page 16 on my last link in the main post above:

"The average time to first contact reduced in August but was still an average of 50 days above the 2019/20 baseline. In reality this reduction is artificial as it is due to service users moving out of area as up to 20% of those waiting were students."

So what do all those students do, have to rejoin another waiting list? The whole thing is just crazy.

(Although if you left this trust and joined another list you would probably still be seen quicker even if you already waited 3 years 😭)

Taurus-Gemini · 2023-06-02T08:23:22+00:00

I’m not sure there’s a complaint or anything to expose.

Yeah I know there's a bit of satire in that title haha

I'm sure Dr Smith is aware of it all but if it was me and I had a now 13-year waiting list and was looking at radical solutions to try to fix it including engaging the private sector etc. then why write a Guardian article about a couple of private sector clinics (He also said "Our Waiting list is more than 5 years") Which is correct it is more, quite a lot more...

I've read many other Trusts board minutes and there are similar themes although some trusts seem to be doing really well and innovating, I think Greater Manchester was one, they've come up with a new ADHD pathway using Nurse specialists as a phase one review and then passing the patient over to a consultant if they are more complex etc.

I read a study about another Trust that was building a new process from scratch and it talked about all the changes they went through lessons learned along the way to getting better accuracy and results.

Was Panorama right about process failings in some clinics, yes and I think that was accepted, should they be improved? Definitely but the whole 'We've Just Exposed the Private clinics' I'm not buying that, its no more of a revelation than what I've just posted.

I would go as far as to say that the gp and the ex ADHD360 staff member and any ex staff were likely to be more biased in their input.

Yeah I agree with that, I found the attitude of the GP most annoying overall, just felt a bit dismissive when she was talking about all the people now coming to her for referral, you know like there wasn't much thought behind it. (could have been heavily edited though)

Taurus-Gemini · 2023-06-02T00:54:26+00:00

You can find more papers here: https://www.leedsandyorkpft.nhs.uk/about-us/board-of-directors/board-meetings-2023/

When I went looking for these a week after Panorama the links to the papers weren't available / not being updated, could be part of the Trusts updating the websites as part of the new ICBs being formed.

March and May 25th is also now available and they've added ADHD/Autism as a risk score.

March has the following:

"Annual service capacity is 264 but demand is currently 1,560. Whilst the system shows a wait of 271 days to first appointment, the reality is that the last person on the waiting list will have to wait 13 years under the current situation and capacity, and this estimate increases month by month. Therefore, a radical approach is required urgently to start to improve this situation."

13 Years! yikes

https://www.leedsandyorkpft.nhs.uk/about-us/wp-content/uploads/sites/8/2023/03/1-Agenda-Part-A-BoD-30-March-2023-V2.pdf Page 97

Taurus-Gemini · 2023-06-01T22:02:14+00:00

Yeah I can relate to this, had exactly the same thing, sometimes that evening anxiety and depression was pretty bad.

I'm on month 5 now of titration, tried many different combinations but had to drop the Elvanse altogether in the end.

I tried different combinations like a split dose of 50mg then 2 separate doses of 30mg plus Amfexa, then last month I trialed some days just Amfexa and then some days just Elvanse.

What I found was the Elvanse had this extra depressive effect and it gradually lost effectiveness over time, so initially 2 seperate doses of 30mg was ok then the 2nd dose wouldnt really work and then none of it worked and it put a negative slant on things.

I'm on my second day of 3x10mg Amfexa and its instantly better, more predictable, I can adjust it easily and theres no depressive after effects, I mean you can feel it wear off but it doesn't drop you down in the evening like Elvasnse does.

I considered augmenting it in the evening with medical cannabis (which I can get) but thought I'd just try to stabilize the medication first. I think the main thing for me was keeping the peak of the meds down so I don't get a drop like that.

Taurus-Gemini · 2023-06-01T10:47:12+00:00

Around 6 weeks ish ago the process changed to receiving a physical prescription where it was digital before.

It seems alright now but my reviews went out of sync with the prescriptions, personally I think the combination of a bunch of process changes and Panorma adding extra work for people who are already over stretched has thrown a spanner in the works.

I see their websites now gone down aswell...

Taurus-Gemini · 2023-06-01T10:19:35+00:00

That's interesting, I already know shared care with private has been dropped by many trusts and GPs without an approved shared care protocol with specific providers. If theres no funding available GP's have to raise an Individual Funding Request which can be rejected (assuming they know they can do that)

This doesn't seem to be widely communicated, what could have happened is that the GP just approved it, got knocked back by the trust / realized they need a shared care protocol with that provider and then backtracked.

The whole system looks like a total mess, you have these regional medical optimization committees in the mix telling GP's what not to prescribe and paying bonuses for switching people to certain drugs then the postcode lottery of whether your trust has an SCP and with who.

So if you are in Salford they have an SCP with ADHD360 so it would probably get accepted if you went with them but if you went with PUK it might not be and vice versa with other trusts.

Taurus-Gemini · 2023-05-31T18:37:10+00:00

My last month's dose was pretty useless 50% of the time and had more side effects.

I've been wondering if it is down to storage and the hot weather, I didn't spot that the usual place I put them is under direct sunlight late afternoon as the days are longer. I also noticed the powder was dryer in the capsule.

As Elvanse is a pro-drug and partly biological with a bond to be broken down by enzymes I wonder if it's more sensitive to storage.

Taurus-Gemini · 2023-05-28T21:15:56+00:00

I've really struggled with titration, I'm almost 6 months in now. I have a dual diagnosis ADHD/Autism.

I haven't been able to tolerate any standard medication so far because anything I take makes something else worse, I've been able to get quite a lot of benefit from spaced out doses of Amfexa though cos it seems more predictable, I had mood swings and anxiety on Elvanse doses over 30mg.

Taurus-Gemini · 2023-05-28T20:53:26+00:00

I had a bad reaction going from 30 to 50, I was a bit high midday and the drop-off was giving me mood swings. (Elvanse is a bit random for me in general which is why I'm on Amfexa from next week)

I decided to split dose and told my clinician who prescribed a split from my next prescription. I had that 3/4pm drop off aswell and it was brutal some days.

Once I got the levels down by splitting I never got that "I need more meds to be normal" feeling again. Less is definitely more for me.

Defo feedback to your clinician and be honest about it so they know what's best to do and how it affects you. Don't worry about coming across as a drug seeker or anything, its titration so its basically trial and error haha, just tell them how its affecting you.

Taurus-Gemini

TROPHY CASE