00:00Hi, I'm Jade Boylan. I'm Matt Quine. And I'm Ailish Lace.
00:04Isle of Nora Diversity then, how was it formed?
00:06I mean, there's been a kind of, I think most of us have had an idea for getting a charity
00:12to support adults.
00:14Over the last few years, I was diagnosed in 2023 with ADHD and autism.
00:19I know all of us here are ADHD and have autism as well.
00:24And we've all very aware that there's kind of no support for adults over here.
00:29And I guess an email went round between a few of us that kind of had been talking about doing
00:36this for a while.
00:37So Jade and I both sit on the autism steering group for the autism strategy that the government have.
00:43Ailish is my partner and I know she does a lot of work at work as well.
00:46So I basically sent an email round to us and Selina and another person who wasn't able to kind of
00:52commit some time to it at the moment.
00:53But, yeah, we basically wanted to kind of get something off the ground.
00:59We'd all been talking about it for a while and we just thought now is the best time to kind
01:02of do it.
01:05Diagnosed autistic 10 years ago when there was still a pathway on Ireland.
01:11And so I was very, very fortunate that I managed to get that diagnosis for free, effectively through NHS Manx
01:17Care.
01:18And so, yeah, sometimes it can be quite obviously very frustrating and confusing to know why in the 10 years
01:23since we actually we have nothing now.
01:25We've gone backwards. We don't even have a better pathway.
01:28We just have none at all for adult diagnosis.
01:31And as Ailish said, it's really, I think, very affirming for people when they get a diagnosis because obviously that
01:36that piece of paper doesn't magically fix anything.
01:38But it definitely allows you to be kinder to yourself and it explains a lot, whether it's autism, ADHD, another
01:45neurodivergence.
01:47And, yeah, it can be really, really helpful.
01:49So we're hopeful that obviously via the Autism Strategy Steering Group and changes in government as well, that the pathway
01:56will happen sooner rather than later.
01:59There's real comfort in knowing that you're not alone and that you are not wrong or in one way or
02:09another, that there's nothing broken about you.
02:12It's complete like your brain is completely normal.
02:15It's just wired a little bit differently, you know, and meeting other people in that situation that you can relate
02:21to and you can relate to their experiences is really powerful.
02:23Yeah.
02:24And can bring real comfort knowing that you're not the only one.
02:27And that's been something that I've taken away from running these support sessions.
02:31What do you think about the idea, because I've heard it a few times floating around, the idea that ADHD
02:39and autism are being overdiagnosed now?
02:43No, it's just, it's not the case.
02:46Like, the statistics just don't back it up.
02:49You look at what the expected prevalence is.
02:54So there's a study in Sweden, which is done over, I think, 20 years, and they look at the expected
03:01prevalence of each is about 4%.
03:03The diagnosis rate in the UK is less than 1% for autism.
03:08We don't have the figures for the Isle of Man, but yeah, certainly the diagnosis rate.
03:13If you look at the mandate that was in Tynwald at the end of last, wait, we're still on April,
03:21so yeah, like last week, they've put their projected figures in there.
03:26And I believe it's something around 4,000 for ADHD and 2,500 or 3,000 for autism.
03:32And we know that we're significantly below those numbers.
03:35When the places like The Guardian had an article back in January or February saying that kind of the medication
03:45rate for ADHD in the UK had increased by 100% over 21 years.
03:50But if anybody had actually read the article rather than the headline, it also says that the medicated population had
03:56gone from something like 0.2% to 0.4%.
04:00And at the start of that study, the medication rate in the Netherlands was 1.9%, and that's gone up
04:07to 2.4%.
04:08So even if they'd gone up 500%, they'd be nowhere near what the medication rate in other more developed countries
04:16that are more aware of this and more helping there.
04:20So the people who are talking about being over-diagnosed are people who don't understand the subject at all.
04:29It's also worth noting that if you look at the curve for diagnosis and you separate it by gender, so
04:37the curve for male diagnoses in the last 10 years just is a slight increase over the last 10 years,
04:45whereas for women it's an exponential increase.
04:47And that is not because women are suddenly developing ADHD, autism and other neurodivergent conditions, it's because our understanding of
04:55those conditions has evolved significantly over that time.
04:58So if you separate it out by gender, the increase is not wild at all, it's just in line with
05:04the increase of population.
05:05But going back to, obviously, earlier in This Week in Timworld, what you just touched on before, so Claire Christian
05:13has said that subject to funding approval, 2.8 million, would potentially go towards creating a new NHS diagnostic pathway
05:23for neurodiverse people over here.
05:25So that's, by 2027, I mean, obviously you hear all these years and dates and stuff, don't you?
05:32By 2027, so that's the full timeline, hopefully by 2029 we'll be fully in place.
05:39How do you feel about that?
05:41Because, I mean, it's frustrating because even though, yeah, you could argue that that's, you know, it's a step in
05:48the right direction and we're moving,
05:49but then within that time frame, it doesn't take away that people are still going to be suffering and still
05:55trying to search for answers within themselves, does it?
05:58No, it's both obviously brilliant news that the government and the healthcare over here are taking it seriously, but also
06:05incredibly frustrating.
06:06Because as you say, there's still so many people on Ireland without access to a diagnosis because they can't afford
06:14it,
06:14because private diagnosis can be quite prohibitively expensive.
06:18And, yeah, it's very tricky.
06:20I mean, I know it's probably seemed quite easy for the three of us.
06:23We are diagnosed whether we were private or not, but it is going in the right direction, I hope.
06:30And I really hope that, obviously, it's an election year, so we don't quite know who's going to be in
06:35certain roles.
06:36But I really, really hope that they keep pushing with this and that they do make it happen.
06:42Because, yes, three years feels like a long time, but that time is going to pass anyway.
06:46So if in three years, at the end of that, we have a pathway, then, yeah, it will be a
06:51success, hopefully.
06:53One of the things I think is key.
06:55I know one of the ministers, I think it might have been Joni Farragher, who was the one who'd actually
07:01raised it,
07:01had said that in a Facebook thread commenting on the pathway, that they're hoping that in the interim,
07:10people with a diagnosis can come away from paying privately for their medication,
07:14and that Manx Care will be mandating that GPs kind of take on shared care,
07:18which I think for a lot of the diagnosed people over here who are on medication, it's prohibitively expensive.
07:24It can cost upwards of £150 a month.
07:28So if you can turn that into, was it £375, £385 for a prescription,
07:33if that would help those of us that are lucky enough to be diagnosed.
07:38And then kind of for anybody who's not diagnosed, to know that there's something coming at least will hopefully help
07:46some.
07:46So just so I understand, so over here, even if you have been diagnosed through the GP,
07:55you still have to pay for your medication?
07:57Yeah, so not if you're, I don't know about if you've diagnosed through the GP before,
08:02but certainly anybody who went for a private diagnosis goes back to their clinician,
08:08they take them through a titation period to get them on their medication and then give them a private prescription.
08:13Now, I'm aware of a couple of people who have said that their GPs have taken on a shared care
08:19agreement,
08:20but I'm also aware of hundreds of people who are paying hundreds of pounds.
08:23So I pay privately for my prescriptions. I did attempt to get shared care with my GP,
08:29but there's no formal shared care agreement in place at the minute,
08:33which means that GPs do not have to agree to take on a shared care agreement,
08:38meaning that your prescriptions will be issued privately and paid for privately.
08:43So for me, that means roughly £150 a month just for the medication itself,
08:50plus a prescription fee of about £40, and that varies obviously depending on where you're going to
08:56for your prescriptions. Mine's through Aviva.
09:00And thankfully, I managed to get diagnosis and that through my workplace healthcare,
09:05but I know a lot of people are not in that position and not as lucky as to be able
09:10to access these services.
09:11So a private diagnosis can cost you anywhere up to and including over £1,000 or thereabouts,
09:19which not a lot of people have £1,000 in the bank to pop on a diagnosis, never mind £150
09:25a month.
09:26So it would be really good if, with the development of this pathway,
09:30if they could take on some kind of formal shared care agreement for those that are already diagnosed
09:36and yet to be diagnosed. It's also worth noting that this medication is not a nice-to-have.
09:43So it's wonderful. It has been life-changing for me and for many others.
09:49It's something that you can live without, but basically what I'm saying is I'm thriving now,
09:56whereas before I was coping.
09:58Yeah.
09:59You know?
10:00Yeah, that's what I...
10:01And it's not going to work for everybody, but if even one person can experience what it's like to thrive,
10:08that's really impactful.
10:09Mm-hmm.
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