Autistic people wait years for diagnosis in some parts of England
Tag: nhs
Calling on all UK zebras –
Please take the time/energy to sign or share an ongoing government petition to action an effective care pathway for patients with EDS: https://petition.parliament.uk/petitions/212713
It took me seeing about 4 NHS doctors, two of whom were musculosketal specialists, over the course of 8 months before I gave up and paid out of pocket to see a private hypermobility specialist to get my hypermobile Ehlers Danlos Syndrome diagnosis, a year after I started presenting symptoms.
I know that I’m fortunate – it “only” took me a year to get diagnosed, I had the resources to afford a private appointment for my diagnosis, and I have the resources to continue to pay for private treatment by a physiotherapist specialising in hypermobility. I’m also lucky enough to have a GP who understands and believes me when it comes to all the weirdness that comes with EDS, and will take me as an expert in my own condition.
Most people aren’t this lucky. EDS is becoming more recognised and more and more people are recognising their symptoms and pursuing a diagnosis, but the NHS still hasn’t implemented a formal diagnostic process. Post-diagnosis, patients are just abandoned. Complications and comorbidities are poorly understood and diagnosis and treatment of the rarer ones such as mast-cell activation syndrome (MCAS) and craniocervical instability (CCI) isn’t readily available on the NHS, forcing people to crowdfund for further private diagnoses and treatment.
The NHS is failing EDSers, and something as simple and bureaucratic as an established care pathway would improve so many lives.
Even if you don’t have EDS, please share and sign – it’s an official government petition so you won’t get spam emails and it takes under a minute.
Link repost: https://petition.parliament.uk/petitions/212713
@cassolotl figured you might be interested in this?
You thought right! I’m in. I will tweet it and such also. 🙂 Thanks!
I know I say this a lot, but:
If there’s one thing I’d like the public to know about medicine in the US, it’s that it is not standardized. For the same condition, one doctor will recommend surgery, another will send you to physical therapy, a third one will put you on painkillers, a fourth one will give you steroids, and a fifth one will say “there’s no effective treatment but it will get better on its own.”
Each one of these doctors will say “this is the evidence-based standard of care, I have studies backing me up, and everyone who’s up-to-date with the research does it this way.” (The studies will be real, too. There’s just other studies showing other things.)
This isn’t true for every condition, nobody’s going to prescribe PT for strep throat*, but for something like chronic pain or mental health issues it’s especially important to keep in mind.
*I… think. I’ve worked with some weird doctors.
@slatestarscratchpad can you comment on this?
Agreed, though with some caveats.
(like: all doctors are weird doctors)
There are a few things that are really obvious and almost universally agreed, like the strep throat example.
But other things are total judgment calls. Should a depressed patient
be treated with antidepressants, therapy, or both? Well, it depends.
How bad is their depression? What kind of exogenous stressors
contributed to it? Are those exogenous stressors solveable? Is the
patient “psychologically minded”, ie smart and self-critical enough that
she can understand complicated therapy concepts like “self-esteem”?
Does she have poor coping strategies and self-defeating beliefs? Does she have an hour per week to devote to therapy? Has she had very
positive or very negative experiences with medication or therapy before
in the past? Is she taking ten medications already that would interact
with antidepressants? Does she have some other condition that the
antidepressants would coincidentally solve (eg if she is underweight, we
can give her Remeron which is an antidepressant that causes weight
gain). Does her insurance cover one but not the other?There is no
guideline that can possibly consider all of these factors, so it comes
down to the doctor consulting their Vague Intuitions. That means even
with a single perfectly-consistent doctor, they’ll prescribe different
things for superficially-similar patients. And if by chance doctors have
different Vague Intuitions, they’ll prescribe different things for the
same patient without either of them necessarily doing anything terribly
wrong.Other times the correct treatment is “the one you’re most familiar with”. With very rare exceptions, I only prescribe four benzodiazepines – Ativan, Xanax, Klonopin, and Valium. I know there are like two hundred others, but they really have no advantage over my four, and I’m not that familiar with them – I might get the dose wrong, or forget about a side effect. I know some other doctors who trained in weird places and are really familiar with Serax or something, and they should use Serax rather than switch to something they don’t understand. Likewise, as a psychiatrist I (claim to) understand all sorts of weird antidepressants, and I might give you a weird antidepressant perfectly tailored to your situation, but I don’t want a random primary care doctor prescribing clomipramine because he heard it’s good sometimes. I don’t even want a psychiatrist who specializes in schizophrenia and hasn’t really worked with clomipramine doing that. In return, I don’t use clozapine, even though I know it’s great, because I don’t have enough schizophrenia experience to use it properly (I also don’t have the support from labs and nurses it would take to monitor it well). If there’s a patient who really needs it, I’ll refer them to a clozapine specialist. But if they can’t go to the clozapine specialist for some reason, I’ll probably use one of the few antipsychotics I’m super-comfortable with. If I were a Dr House level genius, I would know all of these drugs and use them all confidently, but almost nobody is that great. In some fields, I’m not even good enough to fully know what I don’t know. There are two thousand different schools of therapy. I know about three of them well enough to feel comfortable practicing them, and another ten well enough to feel comfortable knowing when to refer someone for them, but if one of my patients could benefit from Gestalt Therapy or something else I have barely even heard of, they’re just screwed.
(keep in mind that when a doctor says they’re “comfortable” with a certain treatment, they don’t just mean “I heard about this one time in medical school and mostly remember it”, they mean “if I screw this up, you will die, but don’t worry, I’m confident I know it well enough not to screw up.” This can be a high bar, and not always a level of confidence everyone can maintain about everything)
Still other times, doctors have different values and experiences. I usually trust my patients, and I believe informed people who understand the risks and benefits should have the choice about what to do with their own bodies. I also coincidentally have met a lot of people whose lives have been devastated from having the medications that helped them taken away by gatekeepers on grounds of “we’ve got to fight addiction!” So I am more likely to prescribe (and especially continue) potentially addictive substances than some other doctors I know are. I have had generally good luck with these, so I continue to prescribe them. I think a doctor who works in an area devastated by drug addiction, and who was more temperamentally conservative and less temperamentally libertarian, would be more careful with these, as would a doctor who got unlucky and their first benzo patient became a junkie and overdosed and died. Some doctors value patient satisfaction/comfort more or less compared to getting results. Some doctors are more worried about the risk of side effects that haven’t been discovered yet and so more conservative about supposedly-provably-safe medications. Some doctors value patient autonomy more or less compared to giving the most effective treatment. Some doctors value being absolutely sure something works more or less compared to being willing to try promising experimental treatments. Guidelines aren’t always going to help here.
(a particularly common place I see this come up is in pain management. If there’s a condition that will go away on its own after two weeks, but be really painful until then, how aggressively do you treat it? What if the aggressive treatment has risks or side effects? You can find a doctor with basically any conceivable philosophy on this question.)
And finally, is this really that surprising? Or is every profession like this? Will two financial advisors always recommend the same investments? Will two computer programmers always write programs with the same structure? Will two lawyers always try the same argument? I think it’s pretty common in skilled professions for there to be multiple different ways of handling something, none of which are wrong. Medical students often get asked to make lists of the top five things to do in a certain situation, and often everyone makes a different top choice but has approximately the same five choices on their list. I think this is normal and not necessarily incompatible with people being basically reasonable.
I don’t want to claim there aren’t a lot of doctors who are incompetent, or who disagree with the guidelines just because they’re contrarian. I often disagree with the guidelines just because I’m contrarian (did you know the sleep guidelines say melatonin doesn’t work?), and I am very likely incompetent in some ways I don’t currently understand. But it’s not 100% that.
I’m reblogging this because it’s important context and I don’t want my original post to sound like “care isn’t standardized because doctors are all just stubborn jerks.” Two doctors who are both caring and knowledgeable can still have very different recommendations, and that’s important for patients to be aware of.
“Thousands of patients in NHS mental health units are injured every year when they are restrained by staff, according to new figures which campaigners have branded “horrifying”.
A total of 3,652 patients suffered an injury through being restrained during 2016-17 – the highest number ever – according to data from 48 of England’s 56 mental health trusts. The figures raise serious questions about the effectiveness of the government’s drive to reduce use of techniques which critics say can be traumatic for patients and even endanger their lives.
“Whilst this dramatic increase may be partly explained by improved reporting, the scale of injuries is horrifying. This is also, no doubt, in part due to the stress that many trusts are under, with bed occupancy close to 100% and often relying on agency staff,” said Liberal Democrat MP Norman Lamb. He was the health minister in the coalition government which in 2014 ordered NHS mental health trusts to reduce their use of restraint.
“This amounts to a serious and unacceptable breach of people’s human rights,” he added. “What is most shocking is that some of those against whom restraint is used have suffered abuse in their lives. For them, restraint amounts to an assault, which can be frightening and can completely undermine trust.”
The trusts where the largest number of injuries occurred were Southern Health (534 incidents), Merseycare (493) and South London and the Maudsley (255).
The NHS does not publish annual figures for the number of patients injured due to restraint. But these new statistics are much higher than any previous studies. For example, a survey Lamb undertook last year found that 554 injuries to patients occurred at 22 trusts.
Overall, restraint was used 97,000 times in 2016-17, although some trusts have hugely reduced the number of times they deploy such techniques. Around 2,600 staff were also injured during the use of restraint, with the Greater Manchester trust recording the highest number – 276.
Alison Cobb, a senior policy and campaigns officer at Mind, the mental health charity, said the increase was “alarming”.
“Physical restraint can be humiliating, terrifying and even life-threatening,” she said. “It should only be used as the last resort, when there is no other way of de-escalating a situation where someone may harm themselves or others.”
The Crisis Prevention Institute (CPI), which obtained the figures under Freedom of Information laws, also found that 13% of trusts do not have any restraint policy in place, even though government guidance in 2014 said all providers of mental health care should draw one up.
Martyn Dadds, the CPI’s managing director, said: “Worrying levels of restraint are still taking place, with resulting injuries, despite years of government recommendations designed to reduce these practices. It’s critical that staff are properly trained and that NHS trusts have adequate policies in place to ensure that the most vulnerable members of society, as well as staff, are protected.”
Statutory guidance is needed to improve both standards of training, especially in de-escalation techniques, and the recording of the use of restraint, Dadds added.
The figures come just before Croydon North Labour MP Steve Reed’s mental health units (use of force) bill, which aims to reduce use of restraint, returns to the Commons on Friday. It was inspired by the death of his 23-year-old constituent Olaseni Lewis, who died after being restrained at the Bethlem Royal mental health hospital in Kent in 2010.
Denis Campbell,
Figures reveal ‘alarming’ rise in injuries at mental health units
Restraints are always assault tho

The absolute state of the British government.
It’s not like you didn’t see it coming. Socialized medicine doesn’t work.
The majority of universal healthcare systems work just fine as long as they’re funded properly. The NHS has problems because we have a government that consistently cuts the healthcare budget, not because the healthcare system is “socialised” (it’s not, in fact it’s being privatised increasingly and that is where a significant amount of the underfunding and overwork issues are coming from).
https://www.theguardian.com/society/2018/mar/09/nhs-cuts-and-privatisation-have-brought-no-benefits
Also, the Daily Mail is a borderline far right tabloid and should only ever be taken with the largest pinch of salt.
Capitalist countries love to undercut any and all forms of socialism -domestic or abroad- and then point to the crises they create like “This is why socialism doesn’t work” while capitalism slowly fails around us
They most def found the taxpayer money to fund the wedding…
The daily mail is a right wing shit rag. The NHS in England & Wales is being crippled deliberately by the fascist tory party so they can speed up the privatisation process. This means people are left to die, the NHS is on the brink of an engineered collapse. Fortunately in Scotland the SNP controlled Scottish government has retained most control over the Scottish NHS, which is properly funded and flourishing! The English insist on voting for fascists though…
i honestly dont know what i would do if healthcare was free here. i feel like i’d go to the hospital and they’d put me in the government funded sickness scanner and they’d be like “holy fuck dude, you got like, syndromes and shit. how are you even walking around right now” and i’d be like “i dunno, i didn’t wanna bother anybody about it”
Asthma patients ‘missing out on basic care’ – BBC News
Really bad place to try to pinch pennies

Mom gets real in Facebook post about why the anti-vaxxer movement is so dangerous for her daughter.
Also, if you’d rather make dead kids than have the possibility of your own kid become autistic you are garbage
Vaccinate. Your. Fucking. Children.
Honestly, just vaccinate your children, for themselves and others around them like above.
Herd immunity is a huge part of how we came so far as a society. Don’t be a fucking medieval asshat. Vaccinate. Your. Kids.
Vaccinate your kids you stupid stupid people
No.
Then keep them away from the rest of us. I also hope you never have children, because that should be considered abuse.
I have children. They aren’t vaccinated. I wasn’t vaccinated. Nor were my brothers and sisters or cousins. Vaccines do not prevent diseases. Modern sanitation and plumbing. Every country that still has these diseases are the ones that are underdeveloped. They bring them vaccines and it only makes them sicker since their immune systems are already weak. I also know several moms who are nurses who don’t vaccinate.
Have fun possibly burying your kids, forcing them to endure painful diseases, and/or doing the same to other people’s kids, you selfish, pigshit ignorant moron. I’ll be blunt: you’re a shitty, incompetent parent who’s willing to possibly sacrifice your kids for scam artists who keep getting disproven, just so you can feel like a speshul mommy who’s unique and superior.
Seriously, you look at this post about a suffering kid and all you do is stamp your feet and say *no!“ like a little toddler. I feel sorry for your kids, being raised by a stupid, selfish, immature brat who’s fucking delusional enough to think organic acai bowls will magically cure everything because you want to play magical nature Disney princess, instead of actually taking care of them.
insulin should be provided free to every diabetic.
I couldn’t stop laughing earlier, when I was looking up the postcode for the Chadwell Heath office and these Google reviews came up.
“If you plan on accessing GP services, register elsewhere.” 😂😩
(Yeah, previous experiences with the original location made me sorry to see they’d taken over that other practice when I really needed to find another doctor. No wonder they were accepting new patients, both times…)
And I would guess that most of those ratings/reviews are from people who are, indeed, way more used to trying to deal with NHS services.
In any case, it ain’t just me.
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