Jump to content
  • Announcements

    • Kris

      Depression, Mental Health and Crisis Support   06/04/2017

      Depression, Mental Health and Crisis Support   Depression and other mental health difficulties are common amongst people on the autistic spectrum and their carers.   People who are affected by general mental health difficulties are encouraged to receive and share information, support and advice with other forum members, though it is important to point out that this exchange of information is generally based on personal experience and opinions, and is not a substitute for professional medical help.   There is a list of sources of mental health support here: <a href="http://www.asd-forum.org.uk/forum/index.php?showtopic=18801" target="_blank">Mental Health Resources link</a>   People may experience a more serious crisis with their mental health and need urgent medical assistance and advice. However well intentioned, this is not an area of support that the forum can or should be attempting to offer and we would urge members who are feeling at risk of self-harm or suicide to contact either their own GP/health centre, or if out of hours contact NHS Direct on 0845 4647 or to call emergency services 999.   We want to reassure members that they have our full support in offering and seeking advice and information on general mental health issues. Members asking for information in order to help a person in their care are seeking to empower both themselves and those they represent, and we would naturally welcome any such dialogue on the forum.   However, any posts which are deemed to contain inference of personal intent to self-harm and/or suicide will be removed from the forum and that person will be contacted via the pm system with advice on where to seek appropriate help.   In addition to the post being removed, if a forum member is deemed to indicate an immediate risk to themselves, and are unable to be contacted via the pm system, the moderating team will take steps to ensure that person's safety. This may involve breaking previous confidentiality agreements and/or contacting the emergency services on that person's behalf.   Sometimes posts referring to self-harm do not indicate an immediate risk, but they may contain material which others find inappropriate or distressing. This type of post will also be removed from the public forum at the moderator's/administrator's discretion, considering the forum user base as a whole.   If any member receives a PM indicating an immediate risk and is not in a position (or does not want) to intervene, they should forward the PM to the moderating team, who will deal with the disclosure in accordance with the above guidelines.   We trust all members will appreciate the reasoning behind these guidelines, and our intention to urge any member struggling with suicidal feelings to seek and receive approproiate support from trained and experienced professional resources.   The forum guidelines have been updated to reflect the above.   Regards,   The mod/admin team
tuesday

how should hospitals better care for ASD patients? discrimination?

Recommended Posts

tuesday   

im interested in hearing from people about how hospitals could better accommodate people with AS.

i had a traumatic experience at a hospital entirely due to my AS, recieved sub standard care, and now have long term health issues- all due to the lack of knowledge of the staff with whom i dealt. i have to have the op all over again, with it's lengthy recovery.

while the hospital has countless posters offering free translators for people who do speak english, there was no support for autistic patients (classified by the NHS as a long term condition with communication dificulties), nor was there any awareness of what it is, or problems autistic patients may encounter.

the referral letter states i have AS, and i introduce myself to staff as having it. it made no difference.

im trying to draw up a basic list of problems autistic people may encounter in hospital. most issues can be tackled with foresight, & better awareness amongst staff.

~for example- i had to book in at 10 am, sit in a crowded waiting room, until an op at 4pm. i dislike being around people, & have *severe* visual overload & visual crowding, so sat on the floor in a corridor. staff were dismissive of me when i asked for help. but the waiting room has specially wide chairs for people who are obese.

~i cannot understand many accents well, others are painful to my ears (eg scouse, spanish). i saw a spanish surgeon who raised her voice in anger when i asked to see someone else, politely explaining i couldnt understand her. i have echolalia, asphasia, ADD, & hyperesthesia which makes many noises (inc words or voices) painful. i still had to see her. she spoke to me with unconcealed anger.

~i have severe hyperesthesia, so light touch is painful, & touch on my arms makes me feel sick AND hurts. people kept patting me on my arms to 'calm me down'. yet hyperesthesia is common in AS, & my medical notes clearly state i have AS. when i eventually told someone to F off for doing it, i got the outraged 'you are UNACCEPTABLY RUDE' glares. but it hurts me, i find it hard to speak sometimes, im embaressed to explain things~ and was clearly giving off very uncomfortable facial expressions. i couldnt express myself well enough prior to taht to explain what hyperesthesia is, and know rom prior experiance that people generally think one is anyway, simply being rude, neurotic, attention seeking, blah blah blah.

there was an excellent article in the NY times last year, where airports recognised the unique needs of autistic travellers, & provided swift movement through ques etc. (google "testing autism and air travel")

ALL hospitals should have a similar awareness of autism, & strategy for ASD patients.

 

i did not encounter any awareness, yet this is a major, new, teaching hospital. it's neurology dept does internationally recognised, and groundbreaking research into AS. sadly, this is not reflected in the hospital. some staff had never heard of aspergers or autism when i mentioned it, one spoke to me as though i was a sub normal child :/

 

i was regarded as ~racist (when i asked to see an english dr because i cant understand some foreign accents, though the hospital has no prob;em with people who choose to live in england and not speak english),

~fussy (when i asked if there was a bed in a quieter position~ to recover from an op, i'd been placed opposite the doors to the ward & nurses' station- im painfullly sensative to noise and visual movement),

~selfish when i asked for an early appointment (because i cant wait in waiting rooms) etc

and staff made their disapproval very clear to me. at best i was spoken to as though i am of sub normal intelligence. i am not.

do you have any ideas of basic standards youd like to see? NICE and the dept of health are in consultation atm, so it seems a good time to raise this.

sorry this is so long, and thanks in advance : )

 

 

Share this post


Link to post
Share on other sites
justine1   

Hi

 

I work in a hospital and whilst I completely understand where you are coming from(I have two sons with ASD) it is very unrealistic to meet every single person/patients needs.

 

I do believe most staff do try and make reasonable adjustments for patients where possible. Looking at the issues you have I personally cannot see what they could have done differently.

 

The issue of overcrowded waiting room: Possibly could have put you in a private room but this is costly and some hospitals don't even have the facility to do this. The other option could be that you were asked to come in at a time closer to your op time,however again how would you know for sure when this will be? Surgeons are also consultants,they have op lists to stick to but also have to do ward rounds and cover for emergencies. If you went in at 2pm and your op was scheduled for 4pm who is to say an emergency would not come up and cause delays.

 

With the accents,again I understand. My son Sam had difficulties when being assessed as his assessor had an accent that he struggled with. There are many English dialicts which we as NT people even struggle to understand but this cannot warrant requesting certain staff. My brother has Aphasia as well so for most appointments he takes his wife with him, prehaps next time you can take someone who knows how to best communicate with you. There are communication boards you can get online to take with to hospital or even create a communication book to take with for staff to read. It used to be ok for females to request female staff to care for them but now this is not always possible with the changes over the years there is almost an equal amount of female nurses as there are male. Likewise most consultants/surgeons are from abroad as there are not enough english people to fill the posts.

 

Again with your sensitivity to touch you could include it in a book or even make yourself an ID type bracelet stating your sensitivity. It is a natural reaction for caring staff to comfort patients and this generally does include touch, just because your file states you have AS does not mean they are to know this. Despite the fact I have two sons with ASD if a patient comes through the door where I work I will not know how to treat the patient as they are an individual.

 

Always call the ward or department you are going to prior to going or email them with details of your diagnosis and how it affects you. Don't look at what the hospital could have done differently but what you could do next time. ASD is just one of many,many disabilities so as I say it would be very hard to meet everyones needs and to understand each individuals preferences, especially if it is just for a day procedure. Prehaps if you were on a ward your experience would have been different as they had a longer time to get to know you.

Share this post


Link to post
Share on other sites

This is a difficult one. Hospitals are generally busy, busy places with crowded waiting rooms and staff rushed off their feet often doing the work of 3 - 4 people. This means hospitals cannot make allowances for every possible individual's needs.

 

Although I sympathise with you, did you not know that hospital waiting rooms are crowded and noisy? If you have to go through this again, perhaps you should plug your ears to muffle the sounds slightly or an iPod and just look around and take note from which direction names are being called. It's not much difference really from boarding a crowded train or walking through a busy shopping mall. Would you complain to the management of the shopping mall and request they make it a silent zone to suit you?

 

Knowing hospital consultants like I do, they do not have time to read a whole set of casenotes before they see you: they just read the appropriate referral letter from your GP or referring doctor. If your conditions are not mentioned in the referral letter, the consultant is not going to know, let alone give you special treatment. S)he just does not have the time. Ok, there is no excuse for this consultant shouting at you but remember, you do have the right to request a second opinion from someone else. If you have problems with accents then you know that you need to sharpen up your listening skills and focus.

 

It is easy to apportion blame especially when you had a bad experience but - had everything gone well and smoothly, would you have written to the hospital to express your satisfaction and gratitude...?

Share this post


Link to post
Share on other sites
sesley   

maybe you need to contact your local Hospital adminsitration/management/PR and ask them about policys for people with special needs,like ASD and explian the difficulties and different challenges,like sensory and crowds and understanding language.and ask them if they have autism awareness policys

Share this post


Link to post
Share on other sites

I worked at our local hospital and they had a Disability nurse who was able to offer advice to different departments on how to best manage a particular disability. I would start by looking on line at your local hospital services.

 

You could ring the help desk and ask for this service. If none is available I would write or speak to PALS (Patient Advice and Liaison Services) and set out your concerns and ask how they can help you.

 

When I have had an appointment for my son I have got my husband to go ahead and explain his difficulties. I think most outpatients can be accommodating. Do you have an advocate who can help?

 

Wards are far busier but with your disability I think that pre operatively a side room should be allocated to you. I would recommend every one to have an advocate with them and write down your concerns as listed above so there is no misunderstanding.

Share this post


Link to post
Share on other sites

im interested in hearing from people about how hospitals could better accommodate people with AS.

 

i had a traumatic experience at a hospital entirely due to my AS, recieved sub standard care, and now have long term health issues- all due to the lack of knowledge of the staff with whom i dealt. i have to have the op all over again, with it's lengthy recovery.

 

while the hospital has countless posters offering free translators for people who do speak english, there was no support for autistic patients (classified by the NHS as a long term condition with communication dificulties), nor was there any awareness of what it is, or problems autistic patients may encounter.

the referral letter states i have AS, and i introduce myself to staff as having it. it made no difference.

 

im trying to draw up a basic list of problems autistic people may encounter in hospital. most issues can be tackled with foresight, & better awareness amongst staff.

 

~for example- i had to book in at 10 am, sit in a crowded waiting room, until an op at 4pm. i dislike being around people, & have *severe* visual overload & visual crowding, so sat on the floor in a corridor. staff were dismissive of me when i asked for help. but the waiting room has specially wide chairs for people who are obese.

 

~i cannot understand many accents well, others are painful to my ears (eg scouse, spanish). i saw a spanish surgeon who raised her voice in anger when i asked to see someone else, politely explaining i couldnt understand her. i have echolalia, asphasia, ADD, & hyperesthesia which makes many noises (inc words or voices) painful. i still had to see her. she spoke to me with unconcealed anger.

 

~i have severe hyperesthesia, so light touch is painful, & touch on my arms makes me feel sick AND hurts. people kept patting me on my arms to 'calm me down'. yet hyperesthesia is common in AS, & my medical notes clearly state i have AS. when i eventually told someone to F off for doing it, i got the outraged 'you are UNACCEPTABLY RUDE' glares. but it hurts me, i find it hard to speak sometimes, im embaressed to explain things~ and was clearly giving off very uncomfortable facial expressions. i couldnt express myself well enough prior to taht to explain what hyperesthesia is, and know rom prior experiance that people generally think one is anyway, simply being rude, neurotic, attention seeking, blah blah blah.

 

there was an excellent article in the NY times last year, where airports recognised the unique needs of autistic travellers, & provided swift movement through ques etc. (google "testing autism and air travel")

ALL hospitals should have a similar awareness of autism, & strategy for ASD patients.

 

i did not encounter any awareness, yet this is a major, new, teaching hospital. it's neurology dept does internationally recognised, and groundbreaking research into AS. sadly, this is not reflected in the hospital. some staff had never heard of aspergers or autism when i mentioned it, one spoke to me as though i was a sub normal child :/

 

i was regarded as ~racist (when i asked to see an english dr because i cant understand some foreign accents, though the hospital has no prob;em with people who choose to live in england and not speak english),

~fussy (when i asked if there was a bed in a quieter position~ to recover from an op, i'd been placed opposite the doors to the ward & nurses' station- im painfullly sensative to noise and visual movement),

~selfish when i asked for an early appointment (because i cant wait in waiting rooms) etc

and staff made their disapproval very clear to me. at best i was spoken to as though i am of sub normal intelligence. i am not.

 

do you have any ideas of basic standards youd like to see? NICE and the dept of health are in consultation atm, so it seems a good time to raise this.

 

sorry this is so long, and thanks in advance : )

 

 

I will NEVER take my son to an NHS hospital again to be honest, when my son had a breakdown they ignored us as parents, they didn't try to treat him, they shouted at us, and then they demanded we leave the building "We mend broken bones here,not minds..." I tried standing ground to get my son help they brought an admin in and they all said leave the hospital now or get thrown out, they told the MH Nurse who I called in to do as he was told, despite him advocating my son should not be sent home without support....so we left with no support and no treatment and were forced to use SS emergency help instead, they hadn't a clue what to do ! Only 3 months after did we get an MH Consultant in and they prescribed medications.....Although my son has a nurse allotted to him via education there is still no viable contact I could use if he had another issue, we can just hope the current medication holds but NHS ? no fear ! I was more traumatised than my son at the end of 35 hours of sheer hell frankly. I've never come across such hostility and ignorance in my life.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


×