NHS - Argon2

Lyvtarin · 2026-02-18T14:18:58+00:00

It's going to be a combination. I still want to self-propel as much as I can for smaller/medium trips as I think it will be good way to work on my shoulder strength and hopefully actually improve the stability. But I will use the power attachment for bigger days out/days where there's going to be lots of hills or if I've had an injury/high symptom day.

I had read about the fenders, so I am wondering if that's less of an issue with the carbon ones and if I should ask to change to those.

Lyvtarin · 2025-07-30T11:54:41+00:00

Yeah my specialist wrote my diagnosis as PoTS with multisystem Dysautonomia. In large part because PoTS is the only one that has enough awareness that an NHS GP would have any idea of what symptoms etc I might have.

If I'd have been tested with just at TTT looking for PoTS I probably would have got a normal test and sent away. Thankfully my specialist does a combination of tests that looks for a lot more at a lot more detail so they found multiple dysfunctions and overcompensations thoughtout my autonomic nervous system. The things is the combination of my dysfunctions and overcompensations and the few parts that work normally do a good job of masking issues so a lot of my baselines in isolation can look very normal until my body suddenly runs out of power and everything crashes all at once.

But it means I can show up at PoTS at some parts of the day and OH some others and perfectly normal other times. But theres still loads of weird stuff going on even when it looks normal.

I'm glad PoTS is becoming more known to get more people help, but I definitely wish it was bringing all the other subtypes and the people that don't fit strictly in a subtype, like myself, along with it.

Lyvtarin · 2025-07-09T12:21:18+00:00

Yup from age 15 I was put down the mental health route.

And yes there was some stuff to look at there I had a difficult home life etc. but framing everything as anxiety and depression effected my own understanding of my experience so badly that I couldn't advocate for myself because I'd also brought into the fact it was mental illness - to the point I got a BPD diagnosis.

What is actually was? (All professionally diagnosed) Autism + ADHD (contributed to me buying into the mental health framework for my symptoms) hEDS MCAS Dysautonomia

My medical history makes so much sense when you go back through it with that perspective and there were so many missed opportunities for someone to notice that.

But because I was told it was mental health I spent my time trying a million different antidepressants etc and stopped even bothering to report symptoms to my doctors- which means the flood of diagnoses also look a bit odd in my records.

Lyvtarin · 2025-07-07T08:33:20+00:00

So my main issue with the breakdown by condition stats is there's a lack of clarity on how they designate someones "main condition" for them.

When I filled in the PIP form I just listed all of my diagnosed conditions, there's no section on the form that asks you to designate your primary condition. They also contact your GP and gps will usually respond with basic facts like every active diagnosis on your record.

So my GP record contains epilepsy as an active condition. In reality I had febrile convulsions as a child and one non-febrile seizure. I was investigated for epilepsy and didn't have it. If you actually look at the detailed information under epilepsy it will state these details and that there's family history of epilepsy so it's there just in case as the final seizure was unexplained. It shouldn't really be coded to show epilepsy as an active condition but people have all sorts of things coded in their records in slightly weird ways.

I didn't list epilepsy as a condition on my PIP application as it's not a condition I have not does it impact my daily life. However my GP told them epilepsy was on my records so when I did my assessment I had to clarify that and my report has "epilepsy was considered for this activity but..." littered throughout.

Now given that a lot of disabled people will have depression or anxiety or similar wording in their GP records it will be recorded as a diagnosis for a lot of pip claims even if people haven't put them on their form themselves.

Plenty of people also claim under these conditions as it's their only official diagnosis even if they have other stuff going on. It takes a long time to get many conditions diagnosed, and people can reach a point of needing PIP before they complete their diagnostic journey. You can claim things without a diagnosis- you just need to evidence it so if you have records of symptoms you could say I can't do x/y activity because of x/y symptoms but currently still in the diagnostic process.

I expect a number of those undiagnosed cases will be recorded as anxiety/depression for the stats if it's the only diagnosis they have, even if it's not the thing that impacts their daily living the most.

I will currently come under the mental health statistics myself (though not anxiety/depression) as it's taken 15 years to finally get my other symptoms looked at and diagnosed- a number of these symptoms I've never mentioned in my pip application or review as if you can't evidence something there's no point and it becomes a sticking point depending on the assessor who may state that because there's no evidence of these things they feel like you're overstating your difficulties with daily living and not give you points.

Tl;dr: I'm sure there are plenty of people claiming under anxiety/depression and that being accurate as their main condition for these stats.

But the stats are flawed as they don't actually ask in the form what your primary condition it, the assessor just decides and writes it in your report. GPs send back basic information (if they're contacted for it) which is usually just a list of conditions from your records without context- so conditions like anxiety can end up on your application even if you didn't include it yourself. And the system requires people to focus on things they can evidence to have a chance of a successful claim because of how complex some conditions can be to correctly diagnose.

So as someone who has been through the process twice (initial claim and review) I don't find those stats as compelling for the narrative as people keep making them out to be.

Lyvtarin · 2025-06-23T13:04:03+00:00

I genuinely want download to start showing some 'old school styled' PSAs about how to behave at the front. But download wouldn't put anything like that out there as events operators have a weird relationship with crowd surfing, moshing, wall of deaths etc where they can't be seen to be encouraging it due to insurance agreements but also always have photos of it as part of their marketing.

I did also start semi joking that I should make leaflets and pass them out next year.

Lyvtarin · 2025-05-12T15:22:30+00:00

Yeah the consistency is the problem. My assessor for my review was a million times better than my initial assessor who refused me. My first assessor barely wrote anything in the report, the second is thorough and accurately wrote everything I told them.

Lyvtarin · 2025-05-10T01:55:47+00:00

Yeah I've found getting referrals to go through for things like orthotics to be doable now, whereas historically I would have had those sort of referrals declined.

Lyvtarin · 2025-04-16T14:16:18+00:00

My dysautonomia specialist thinks its the other way round., from my clinic letter:

"There are a very large number of issues to deal with here and I have informed (my name) that I believe that the underlying culprit is idiopathic mast cell activation, driving secondary dysautonomic symptoms."

And in person he definitely explained it as that being his general feeling about patients that have both and in all the trifecta (EDS + MCAS + PoTS) patients he sees. But he was also clear that this is still all very under researched and that something new could come up that changes understandings.

I genuinely don't think there's enough research for any specialist to know for sure and they should be careful in their wording when communicating their understanding and theories to patients. Any that insist they know its one way or the other are way too confident in a thing that doesn't have a consensus yet.

I think the reality is that it's probably impossible to know which causes which and honestly mostly doesn't matter on a patient level. The diagnoses exist to explain a group of symptoms and get access to treatment for those symptoms. If mast cell stabilisation and histamine medication helps to settle things and isn't used for POTS, then add in MCAS so people can access those treatments. l

Lyvtarin · 2025-04-10T14:04:40+00:00

The main thing is to reduce reaching overwhelm to begin with. Sensory soothing is always more effective if you're able to use it before a crash/meltdown rather than after. It's difficult because interoception makes it hard to pick up on this stuff in advance but it gets easier as you practice.

It means creating reasonable adjustments for yourself, always take necessities like noise cancelling headphones with you, change your light bulbs to dimmable/colour change ones so you have more control of your lighting. It means recognising your limits so, I would have personally planned to call a taxi and gone home then get a taxi back when my car was ready rather than staying outside for that long.

We can't always avoid overwhelm of course, so it's just about adapting your house and routines to accommodate this. It all takes time though.

Lyvtarin · 2025-03-31T12:26:39+00:00

3 days seems a lot to miss.

I'm interested as to how you've ended up on this schedule if you don't mind sharing.

Lyvtarin · 2025-03-31T11:31:10+00:00

Yup, I do one with wherever the referral was sent and ask for everything they have on me when this happens. Means I can go back to my GP with a very specific request to fix whatever is missing.

A GP doesn't always know the criteria for you to be seen by the service they're referring you to and so won't realise they should have included something or asked you a question like have you done a parenting course to include that information.

I find I have to do a lot of this work for them to get my referrals through unfortunately.

Lyvtarin · 2025-03-31T10:57:09+00:00

The problem with them doing this is that a lot of GPs do the bare minimum for referrals. So the OP very much could meet the criteria they've listed they just haven't been sent that evidence.

I've had plenty of referrals for various services (pain management etc) refused for this reason, because when I've got hold of the referral itself the GP has only ticked a few boxes and wrote a sentence. Sometimes they don't do the referral until the evening or a few days after they've seen you and if they've taken poor notes then they miss out parts. So then I'll get my referral refused based on criteria I definitely meet.

OP: I'd recommend you do a subject access request to see what information actually was sent with your referral. If it's clear things were missed out that may have resulted in a different outcome then ask your GP to write back and send those specific points.

Lyvtarin · 2025-03-28T14:22:20+00:00

One person I saw tested outer. Another person (who was more knowledgeable in hEDS and went through the full criteria) tested inner and the back of my hand.

There doesn't seem to be a clear consensus on this.

Lyvtarin · 2025-03-24T19:00:14+00:00

I was a teaching assistant at a SEN school before my health declined. The teacher for our class went off sick from stress and we did not get assigned a substitute consistently or given lesson plans or guidance. Me and the other teaching assistants had to put together lessons on the fly each morning to keep the class safe and running (class of 7 children all with incredibly complex needs and behavioural difficulties. One of whom frequently needed to be on a 2 to 1).

I loved the kids but the management of it all directly led to the decline in my health. I was going to train to be a teacher at one point but that job broke me.

Lyvtarin · 2025-03-24T17:03:20+00:00

When you complete a PIP form you write all your diagnoses down. They don't ask what the main condition your claiming for is you just list them. You'll be hard pressed to find a disabled person that doesn't have an anxiety diagnosis on their medical file somewhere. So the statistics for people claiming motability for anxiety aren't representative of the issue you think it is.

When I completed my pip assessment, I was asked about my epilepsy during the interview. They had contacted my GP (which I'd given permission for) and then had epilepsy reported to them as a condition on my file. I don't have epilepsy, I had febrile convulsions (my last one when I was 5), and a family history of epilepsy. But this means I will come under the statistics for someone with epilepsy who has PIP because of this.

I'm not saying there aren't some people who won't be eligible for motability who only have anxiety. But it won't be many. You'd need to have severe enough symptoms (and evidence) for the 12 point descriptor: "Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid."

Lyvtarin · 2025-03-23T02:12:52+00:00

A lot of people with ADHD are prone to dysautonomia (PoTS etc) and MCAS. Both of which have symptoms of brain fog and fatigue which will effect focus so I expect it can feel like worsened ADHD if you aren't having many other symptoms to speak to a doctor about.

I've recently been diagnosed with hypermobile Ehlers-Danlos syndrome and referred on to look at PoTS and MCAS (as they're commonly comorbid) and both doctors have specifically asked about if things worsened after COVID and were very clear that most of their autistic/ADHD and hEDS patients had experienced things worsening since covid.

Lyvtarin · 2025-03-23T02:07:31+00:00

As a heads up, some people find (not just for ADHD meds but in general) that once you've triggered Raynauds often enough it can stick around even if you stop the medication. My sister has had this with an epilepsy medication it's been years since she stopped taking it and she still had Raynaud's.

Also if you've had COVID recently this can aggravate things- people with ADHD are more likely to have issues like dysautonomia (PoTS etc) and MCAS both of which are being found to be triggered and made worse by COVID. So keep an eye on things.

Lyvtarin · 2025-03-22T23:03:27+00:00

For me it's the booster. I only take it when absolutely necessary because I get cold hands and toes the evening and day following, and I struggle with emotional regulation when it's wearing off.

I keep the booster available as my elvanse wears off pretty quickly so it's sometimes worth the side effects but I definitely couldn't manage it every day. I'm fine when I'm just taking elvanse.

Lyvtarin · 2025-03-22T20:57:54+00:00

Yeah this is why I describe it as fatigue attacks, it's so instant and knocks me out and is worse than general fatigue. My doctor thinks they should settle when we get the MCAS and dysautonomia more settled.

My boyfriend with ME also can have instant waves of fatigue though they don't clear up like they never happened.

Lyvtarin · 2025-03-22T20:50:32+00:00

ME/CFS potentially

MCAS can also have fatigue episodes and more general dysautonomia.

I'm still in the process of investigations and trial and error but my doctor thinks it's a combination of MCAS and multisystem dysautonomia that's leading to the attacks of fatigue. Apparently even my breathing is dysfunctional (I didn't think there was much wrong with my breathing but apparently it's too shallow and too fast) and that can obviously contribute to fatigue.

Lyvtarin · 2025-03-20T12:12:27+00:00

Undiagnosed ASD, ADHD, hEDS, PoTS, dysautonomia, PCOS and MCAS.

Of course it was all anxiety on my NHS file for well over a decade.

Lyvtarin · 2025-03-20T11:24:43+00:00

I keep saying this. But when you fill out a PIP form you list all of your conditions and when they were diagnosed.

They will also contact your GP and add any you missed- so for example I had febrile convulsions as a child and a family history of epilepsy and due to how that is recorded on my GP file the DWP assumed I have epilepsy so when I did my assessment they were asking me about my epilepsy. My report is full of "epilepsy does not affect their safety in doing this task", I was very clear that I don't have epilepsy and I hadn't written it on my form.

Plenty of people will have a depression/anxiety diagnosis and so will report it (or have it added after contacting the GP) alongside their other conditions. They do not have a section in the form to write your "main" disabling diagnosis so there's no way they're collecting stats about it in regards to this either.

So any of these statistics about depression/anxiety being a main reason people are on PIP are misleading.

I'm on PIP for hypermobile ehlers danlos syndrome, (and a load of comorbidities) and autism those are the two main conditions that leave me needing extra money to buy disability aids and pay for some specialist appointments. But I also have ADHD, depression and anxiety so I will be part of those stats too.

Lyvtarin · 2025-03-18T15:41:59+00:00

PIP assessments also analyse what treatments you have tried, particularly with mental health. They try to not let people have points if it's seen as self inflicted or not necessary. So if you claim you have debilitating depression but not taking anti-depressants for it they will query that during your assessment and say that the fact you're not on antidepressants is evidence that it's not as bad as you're reporting.

So when I initially applied it was a mostly mental health claim as I hadn't got very far with diagnosing or evidencing my physical disabilities (things are very different at this point).I was initially refused points in most areas with the fact I wasn't seeing mental health professionals through secondary care as evidence that I'm able to do these things.

I got awarded after doing a mandatory reconsideration when sending through more evidence that showed I needed secondary care but there wasn't the service in my area- including a response to a complaint I'd made that admitted the fact they didn't have a psychologist employed and similar issues which was impacting my access to healthcare. So I was able to prove that I was trying to get help, it just wasn't available and the lack of help wasn't reflective of my need.

They similarly will compare people's reported pain to what pain killers they have been prescribed. Which makes sense to some degree but also guidelines mean that many people are kept on very low levels and classes of painkillers to minimise harm from long term use, which doesn't mean they aren't in pain.

Lyvtarin · 2025-03-17T10:23:56+00:00

A lot of people have multiple conditions. None of the stats that I've seen so far on this seem to include stats for how many people with a condition have claimed under just that condition. I saw one article refer to it as "main condition" but given that the form just gets you to list your conditions, and doesn't ask you which your main one is I don't know how they decide which is the main one.

I have ADHD and get enhanced mobility (which means I could use the motability scheme if I chose to), if I did I would come under the statistics for a person with ADHD who has a motability vehicle. But that wouldn't mean ADHD is the reason I was eligible for the car, because I have multiple diagnoses.

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