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Survivor Room / Scars and family holiday
« Last post by Quickquestion123 on September 02, 2019, 09:17:43 PM »
I am going on holiday in a couple of weeks with my boyfriends family, I am 26. Right now Iím doing amazingly well and havenít self harmed since June. All my scars are at the top of my leg so never been an issue with having to tell people or cover up, however on holiday this isnít going to be easy. Iím basically looking for any advice on what you would do? I have some fairly big scars that are still red, risen and you can tell theyíve been sutured, I bought some veil makeup online and for all it fades them slightly itís still very obvious. I donít want to spend all holiday hiding my leg and wearing shorts I want to swim and sunbathe. What would you do? Do I cover it as well as I can and just crack on with things? Is it best to cover it so they canít see? Do I say anything? What do I say if they say something? None of his family know about any mental health struggles. Any advice greatly appreciated as none of my friends know either so nobody to ask for advice, thank you 😊
Survivor Room / Re: Should I complain about A&E? *Trig SH*
« Last post by Lorien on August 28, 2019, 12:11:17 AM »
Headphones 🎧 - I have Sony WH-H900 h.ear they have a lot of different settings. The main thing I really rely on is the feature that allows 1tap pause on the right ear up and hanloding your hand over it reduces the input volume for you to hear what else is happening. It also has 3 settings noise cancelling, ambient sound and off. Mostly I use ambient sound because I can hear what it happening, but it is dulled. I hear more of what is happening than with my noise cancelling ear buds, but it isn't loud and I can hear whatever I want chosse to hear. It is also possible to have a few notes to give to the staff to tell them to approach you because of your headphones. I can switch to ambient sound with no other music or audio book and be able to have a conversation.

I think my experience has been that mostly if I know what the difficulty is it is possible to find a way around it for most things. I also think it's been really beneficial to me to try to balance things when I think about them and meet people in the middle. As much as possible I am prepared for anything I might need to do that is hard, and before it was needed. I made sure that the basics of what I need from people written down, but it's probably not helpful to expect adjustments. I've found in lots of things low/no expectations makes a positive response more  appreciated and a negative one less frustrating.

NAS also do an

I know this might sound weird but have you done anything to help you get to know your Autism?
Survivor Room / Re: Medical Records
« Last post by Lorien on August 27, 2019, 11:35:37 PM »
That was helpful thanks. I am mostly wanting records from a period of time I was unconscious after an OD and when I had surgery. Neither time will be staff that I have any recollection of. I don't know whether to request records from times when I was just there for closing a wound and in that way, I'm only interested in what and when. So hopefully it would be OK.

Were they easy to access?
I read this a day or two back. Honestly, I've known a few people in various roles across the NHS and I'm not surprised to read an article like this based on what they've told me. These so-called 'austerity measures' brought in by the Tories are not only putting patients at risk but the staff as well. This is another reason that I'm considering giving feedback re my recent visits, maybe it'll give them some extra ammunition when trying to get extra funding.
Most NHS staff care about the patients and do try their best with what little resources they have.
Survivor Room / Re: Medical Records
« Last post by Vermilion on August 27, 2019, 02:49:20 PM »
I've had summaries of various medical notes and they tend to just say the basics such as why you had___ (was it self inflicted/accident) and what treatment was given. They'll also state whether any referrals were made to any follow-up services such as specialists. If the records are regarding a stay on the ward it will have details of the above but will also have details of your obs/meds/whether you ate or not and what you were like as a patient (were you one of those ones who refuses meds or are you prone to wandering and getting lost? Any behavioural problems? Etc).
How detailed that is will depend on who wrote the notes.

I will say that some things that I've read about myself have been embarrassing and I've been annoyed regarding other things because they're written so clinically it can come off as a little cold or uncaring. Just consider that it might be a little more difficult to trust staff and/or could make you feel upset .
Survivor Room / Re: Should I complain about A&E? *Trig SH*
« Last post by Vermilion on August 27, 2019, 02:35:39 PM »
Noise cancelling headphones are a good idea but I worry that I won't hear when I'm called in..

The 'complaint' would be feedback/suggestions with the only aim to make make things a little better for those on the spectrum. I think that I am getting frustrated that everything is so much harder because I happened to be born with autism. I'm thinking that if nobody mentions things then nothing will change y'know? I've had better experiences (though A&E will be chaos no matter what) and I was just going to make suggestions based on that. I was also going to mention how lovely the staff actually we're but I was just let down by the waiting time and the sensory overload was unnecessary stress; honestly, I have nothing but compliments re other NHS services (despite my frustrations with CMHT lack of funding) and this would be emphasised too.

I also think that 13 hours is a ridiculous time to wait regardless of the issue that your at A&E for. If they'll automatically investigate then there's probably no point in reporting it?
Survivor Room / Re: Should I complain about A&E? *Trig SH*
« Last post by Tucan on August 27, 2019, 09:51:09 AM »
A few of my autistic friends also use noise cancelling headphones and they are great. I tried a pair.
Survivor Room / Medical Records
« Last post by Lorien on August 26, 2019, 11:09:31 PM »
Has anyone ever accessed their own medical records?

Mostly things have been good in terms of s/h for a long time. But from times that they weren't there are a few patches where I'm not sure what actually happened. I'd actually like to know what happened and what was done particularly a stretch of a few days unconscious. It feels very odd not to know what happened in those days and asking family probably isn't going to happen.

I was wondering how much detail the records are likely to show. I know how to access the records but I don't know if it will achieve the gap filling I'd be wanting.

I also don't know if they will give me all of the physical health records from A&E, or if it is better to just select specific dates?

My diagnosis changed recently and it would be great to have a more distanced look at whether there are patterns in time I find difficult or not. But that is likely to to be the last 12 years which is a long time and a lot of times. I'd rather access information that is useful that have someone trawl through a lot of archives and not get what is useful.
Survivor Room / Re: Should I complain about A&E? *Trig SH*
« Last post by Basement Agent on August 26, 2019, 09:50:56 PM »
I think it depends on what you want to get out of it. If you do go down the complaints route, maybe keep it as feedback - succinct, keep most of the emotion out of it - fine to say disappointing, stressful. If there was something systemic note that, but I wouldn't necessarily get into the blame game as you just be hitting your head off a brick wall on that front. Unless you feel something was clinically negligent or there were seriously poor communication skills.

Disability access for invisible/nuerodevelopmental ones may not feature high on the agenda in institutions (in policy perhaps, but less so practice because of resources and change is very slow to the adapt to the ASD population). Have a look online and see if you can find a hospital that has been recognised for good ASD practice and suggest this as a model, that way your comments are constructive.

Something for future reference.

I use noise cancelling earphones and find them quite good.
Survivor Room / Re: Should I complain about A&E? *Trig SH*
« Last post by Lorien on August 26, 2019, 05:26:11 AM »
I've never heard of sepsis not requiring treatment in ICU and where an injury is involved often surgery. Are you sure that there wasn't a misunderstanding?

All A&E departments are required to treat people within four hours irrespective of the reasons for attending, so if it took that long to treat you then they will have had to investigate themselves.

If you feel like making a complaint will help then do, but it may frustrate you more. I've made 2 complaints ever. Both had multiple 'sorry we've exceeded our target as we are still investigating' the woman from the crisis team lied as much as possible and appeared to get a 'don't do that again' chat for the things they could corroborate and the oh her, a GP was 'spoken to' and given additional training. Neither made me feel better. But both caused more stress than ifv I had left it.
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