Needing suggestions for guidelines about ASD & hospitals

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I'm a woman with mild Asperger's and a long history of mental health problems exacerbated by not being diagnosed ASD til recently. I'm part of a local authority working group that's helping write new guidelines/standards for how people on the spectrum should be treated by government services. We are adapting a document that was used to give local schools an 'autism friendly award'. The first users of the finished document will be our local NHS mental health services, but local general hospitals etc will also eventually use it.

I'm looking for suggestions. We've a lot of stuff on sensory issues already included, plus things like giving inpatients a place to calm down in alone, ensuring admitted patients aren't bullied and staff appreciating that special interests and rituals can be an adaptive coping strategy.

Do you have any other ideas about how mental health services like counselling, home treatment teams and inpatient care can be made more autism friendly? What about other government services?

This would be more appropriate (and get more attention) in the General Autism sub-forum.

They should be made aware that group sessions or group counseling may not be appropriate ways for an autistic person to be able to express themselves. Many mental health wards in hospitals force all the in-patients to attend group sessions one or more times per week. Clearly this is not going to benefit someone with social difficulties that exacerbate whatever other mental problems they may have.

Give instructions in written format as well as verbal.

Allow patients the option to email doctors.

Allow for the option of text appointment reminders.

Thank you all for those really useful suggestions.

(I'll repost this in the General forum.)

Better to ask a moderator to move it than double post.

moved to general discussion

What a worthwhile project you are doing - there is a tremendous need for education in this area, and it could potentially be life-saving.

Although the topics are different, there is some overlap between the issues of your project and this one where we discussed barriers to good health care affecting women, though the issues broadly affect everyone on the spectrum in one way or another. I made it about women because there is a large body of research over time suggesting that women face more barriers more often though; gender-based diagnosis is a huge issue.

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Thanks B19 for directing me to that thread. I particularly like the ideas of a 'Health Passport' and a 'Worksheet' to take to an appointment. And different sensitivity to pain definately needs to be included.

B19: We're really getting things moving here now. This area used to be without services for most people with an ASD...there was little provision for anyone vaguely high functioning. Already the situation here is a lot better than it was when I was trying to get diagnosed.

(And thank you Alex for moving the thread so quickly.)

They should write EVERYTHiNG down. I find they will usually be clear about the medical things, but at the end of the appt they quickly say "make an appointment for x weeks time, and you'll need some bloods. Here's a form". I'm never sure who to make these appointments with or what they are for specifically. I feel as though the whole conversation gets muddled in my head- what were the blood tests for again? Did he say I need the make the appt, or will they send it out to me?

Also, I think doctors should not rely on patients with ASD to pass on any information- it may disappear! I was given an important letter for my GP after having surgery, but found it months later in a pile of paperwork :/. I think this is why I recieved no follow-up or wound checks.

It's very complicated nowadays because they have different teams for everything, with different phone numbers and times you can make appts, get blood results etc. Aaaarrrrrgggggghhhh! I have no idea how most deaf/elderly/vulnerable people navigate this. I think some of them think dealing with the beaurocracy isn't worth it and put up with their ailment until crisis point, (I know I do), which costs the NHS far more in the long run. They think it makes patients go away, (their team has one less thing to do), but it really makes them come back with a vengeance!

Also, GP receptionists can often be grumpy, awful women who only do ticky boxes, so they aren't much help if you forget what a doctor said you need or can't be clear about something. They also need to listen to the patients! I have auditory processing issues and can't use the phone. In the past (before diagnosis) they have been extremely rude/unhelpful and offered me telephone consultations only. However, since I finally got the diagnosis they have been instantly more helpful. I think they should take the word of the patient about what they can/can't cope with, rather than waiting for the paper to confirm it. Basically, they can't get away with bad behaviour when the person has a "real" diagnosis, but think they can fob off anyone who "just" has mental health problems. All difficulties should be treated equally and anyone who DOES have hypochondria should be treated for it, not told to go away!

The most important thing is that doctors receive training about autism, especially in the way pain manifests differently (it is NOT imagined- they may be in severe pain without showing any signs of it), and that some medical conditions are very common in autistics (severe bowel disease, epilepsy, heart disease etc) and should be thoroughly investigated as common tests often miss the problem (there is often some abnormal/rare variation of a condition) so mortality rates are vastly increased. In fact, I would urge them to look out-of-the-box more often than not as the whole point of ASD is that the brain uses unusual pathways, so the body will too.

I am currently undiagnosed but do have experience of the UK mental health system. One of the biggest problems for me is people not appreciating the "patchiness" or variability of my issues. For example, my communication varies from being highly articulate when well and on a topic where I feel confident to having a pronounced stutter and issues with "speech blocking" when I am distressed. This can be very frustrating at times, particularly when someone has seen me present differently on a previous occasion and just doesn't get why I can't get my words out on a different day. Also, I come across as intelligent (for example I am studying a degree via distance learning and getting mostly firsts in my assignments), which makes it difficult for people (myself included) to comprehend the struggles I often seem to have with day-to-day living. Finally, although I am often the first to notice when my mental health is deteriorating, I have difficulty persuading people that this is the case until things get very serious, which I think is partly due to my presentation not always corresponding to how I feel inside. This is something I have observed in other people with autism so may be worth taking into account, with more emphasis placed on what we are saying rather than how it is said.

Hi Pandanus,

I am an administrator for a UK national autism charity and we have award winning paperwork for this very purpose. I would be happy to discuss this with you if you are still looking for input?

Would you mind me sending you a PM?

Thanks.

I would be very interested in this, Davvo7. Happy for you to send it to me (or post it here?)

Finally found a thread on hospitals needing guidelines, I think a few haphazard people in the professions they are in need concurrent guidelines to tie in with their walk in patient clinics for those only registered in more than one borough.
I'm currently at a hospital I've been at since childhood, and I've been going there off and on for the past seven years for this that and the other, mainly for oral conditions.
I find that the Max Fax dep, is limited in their choice of consultants and the only real exception is a friendly receptionist who I think I've known since I had my first ever op there. All under the same department.
I think training in all areas need to be stepped up, just on a patient one to one note, I've had lots of persistently agonizing problems lately with my specialist. Who claims to us all, that he is a well known member of the department and hospital. False. He has the bare minimum of years required for a surgeon to operate fully and solely on a patient, and I don't think he should be allowed to practice unsupervised given the sheer hell and stress, he's put me under.
I had a procedure to remove wisdom teeth but one was a coronectomy, and you need loads of expertise to carry one out successfully, of course he wouldn't answer for any of it.
The post op bleeding, the in surgery bleeding, from my nurse telling me, no fragments were removed before suture, and no light irrigation and filing of the jawbone/socket was performed. He ignored the fact I had dry socket, he made major errors on trimming down the root below the buccal crest and is now saying my root has migrated. Wrong again.
I can account for that from routine x-rays, one taken a month after the op, the last one was five months after, and well, the root looks exactly the same. I also had enamel shard. Hence, why the discussion moved to x-rays briefly and more lies of where he'd perceived my treatment and aftercare to be.
The review was a complete mess and shambles, and yes I tried to see the head of it and he doesn't operate, only consults, in prevention not cause. I hate this bastard,and his female auxiliaries and I have to see him again after more in depth analysis of my roots and positioning of the nerve, London based, but that he's likely to put that one right.
If he's getting paid enough money, you'd think he'd put his research into practicing a bit better and not try and be so full of himself when he clearly has no operative clue. Admitting as much to me from last referral, for other side, where it looks like he wants to further his concepts and guinea train again in joint succession.
I would like to opt for another second opinion, and I don't just mean the final outcome, I mean advice from another specialist surgeon who knows what they're doing, but there are disadvantages, main one being I don't drive.
Something this simple is holding me back, from locating other surgeons in other hospitals and in regards to my condition this is major, as I can easily take hours finding my way to a place. The Nhs are getting so short staffed they're literally using butchers, men of complete arrogance and incompetence to do a proper job. When will they stop being so ignorant and big-headed? Its running peoples lives!
I would like to find a qualified dentists opinion id there are any who can relate to this procedure, as well as root removal, or filling and what they should think needs to be done.

One suggestion for anyone struggling to get their needs met by hospitals is to quote their responsibilities under the Accessible Communications Standard, which is in place for health and social care settings. They must communicate with you in a way that's suitable for you and allow you to communicate with them in a way that's appropriate for you e.g. not solely reliant on phoning up and explaining yourself verbally over the phone. They have legal responsibilities under this so it's a good way to introduce autism-related needs.

Re: dentist, have you tried finding out about learning disability/special needs dentists, as they may be used to autistic patients.

Are there such standards in the U.S.? I have a family member with severe communication difficulties. It would be so much easier if the doctors would write things down or conference in a family member of her choice during appointments if desired. The doctors never do this, so there's often confusion after the fact as she tries unsuccessfully to explain what happened. It's so stupid, because the confusion ultimately creates more work for everyone, including the doctors and/or staff.