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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.
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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 .
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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?
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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.
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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.
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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. https://www.autism.org.uk/about/health/hospital-passport.aspx

I use noise cancelling earphones and find them quite good.
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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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Survivor Room / MH probs are the main cause of sick days for NHS staff - The Independent
« Last post by Rob on August 25, 2019, 10:31:37 PM »
By Sarah Young, The Independent 25 Aug 2019

Mental health problems like stress, depression and anxiety, are the most common reason NHS staff in England take sick days, analysis of NHS Digital statistics shows. Workers took a total of 17.7 million days of sick leave between December 2017 and November 2018. Of these, almost a quarter or 4.2 million were taken due to stress, anxiety, depression, or other psychiatric illnesses. That was more than the next two most common reasons combined, which included musculoskeletal conditions and the common cold.

The Sheffield Health and Social Care Foundation Trust had the highest proportion of lost days to depression and other psychiatric conditions, with 38 per cent accounted for by those conditions.
The findings have prompted the UK’s largest healthcare workers’ union, Unison, to call on the government to invest more money into NHS services.
The union's deputy head of health, Helga Pile, said that having to contend with intolerable work pressure, bullying, and intimidation and violence from patients, were just some of the reasons so many NHS workers struggled with mental health.
“Chronic staff shortages mean NHS employees are routinely being asked to do more with fewer resources as they desperately try to keep the service afloat,” she added. “The Government urgently needs to invest in the NHS to cut staff shortages and reduce burnout, and workers suffering anxiety, depression and stress must get rapid access to mental health support services.”

More than half of workers across all industries say they are affected by poor mental health in their workplace, according to a recent survey carried out by mental health charity Mind. Emma Mamo, head of workplace wellbeing at the charity, said it was important for employers to support struggling employees and tackle work-related causes of mental health problems, particularly in the NHS.
“We know there can be particular barriers for healthcare staff when disclosing a mental health problem to their employer, such as fears about being deemed unfit to practise,” she said. “Those of us with mental health problems can and do make a valuable contribution to the workplace, it just means some of us might need extra support from time to time. “Healthcare staff can make a real difference to the experiences of people accessing NHS services.”

In response to the findings, a spokesperson for NHS England said it was is committed to taking care of its staff and offers “support, good occupational health, flexible working and a range of other measures”. They added: “Staff are the lifeblood of the NHS, and we are already offering the most comprehensive national mental health support offer to doctors of any health system in the world, and are committed to doing similarly with other staff groups.”

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Survivor Room / Re: Should I complain about A&E? *Trig SH*
« Last post by Vermilion on August 25, 2019, 06:03:44 PM »
I know that sepsis is difficult to spot sometimes, I thought I had caught a cold or flu. It was definitely sepsis though, it was later confirmed with a blood test at the b**n unit. By the time I got there I struggled to stand up and fell over. What I don't understand is why the nurse who assessed the b**n didn't realise that the infection was severe and obviously couldn't wait for so long y'know? I don't think that I was under observation if I was left in the waiting room and didn't see a nurse or doctor the whole time I was in there other than the nurse who assessed it, I was about 10 hours until I saw any medical staff after the initial assessment. As far as I could tell there were no doctors there until about 7am ish since not one person got called in. This isn't a MIU but an A&E and surely there should be a doctor there? I guess I just wanted to mention it so that they could make sure that it doesn't happen to anyone else. I just think that they could've at least been honest instead of bullshitting me so that I could've gone somewhere else. I feel like I'd never be able to trust the staff there because they lied to me, though I admit that could be just my irrational brain.

I understand that there's not a lot of things that can be done at A&E re autism but I feel that there was a lot of unnecessary sensory stuff going on. An example is the amount of noisy vending machines with flashing lights which added to the stress of the place. I know it wouldn't bother 'normal' people but it really got too much and it wouldn't do any harm to turn the noise and lights off. I did ask if I could wait in the foyer but then they claimed that they'd called me and I didn't hear them- I did explain that I needed to wait somewhere quieter due to autism but I'm guessing that the receptionist didn't tell them. I feel like a bit more communication could be helpful. I remember a previous visit when I was brought in by paramedics and I told them that I'm autistic and that I'd prefer to be treated at home, it wasn't possible but when they took me to the hospital no one was informed so I kept having to tell every nurse, doctor, crisis team etc. They do need to communicate better I think? I know that A&E is a busy place but I feel like they could have made it more bearable for people with sensory issues, is it reasonable to make suggestions about it?

Are my concerns valid? I know that I haven't exactly got a rational brain which is why I'm asking others about it. I really don't want to come across as an arsehole, I'm so grateful for the NHS, they've saved my arse a number of times but I just feel that things could be improved at A&E y'know? Maybe if I wrote to them I could also mention how good other services have been such as the b**n unit/GPs etc and just make some suggestions? Is that reasonable?
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Survivor Room / Re: Should I complain about A&E? *Trig SH*
« Last post by Lorien on August 25, 2019, 03:05:36 PM »
Sepsis is a huge deal in hospitals at the moment. They are more than over cautious as many people have died from undiagnosed sepsis. If there is even a slight chance 111 have to act as if there is sepsis. So it may be that they discussed it with you in these terms. I was injured at work last year and we called 111 for advice, they said because it was a head injury if a GP had not called in 2 hours they have to send an ambulance on lights and sirens. At 1hr 50mins we called them to say not to send one and we'd go by ourselves. They said we had to call 999 to cancel an ambulance.

From the perspective of someone who is both Autistic and works with young people who have non verbal autism and significant LD and challenging behaviour - there isn't much staff can do. They don't have access to quiet spaces nor the time and staff to create them. I have watched valiant efforts to strip out triage rooms to make them safe for young people because there is a risk to the young person, staff and other patients. But just finding a space is usually very difficult and usually takes the most time.

In my bag I keep a small bag of sensory toys, always have my ipod and a set of cards from stickman communications that help me communicate if I am finding it hard to speak. Maybe it would help you in those situations to have a set up that works for you to help you manage those environments when they are unavoidable?

Did you explain to the nurses that you were finding that area difficult? Once when I was probably (from later diagnosis) manic and being still was really uncomfortable the nurse from triage arranged that I could pace up and down in a certain area and when it was time to go through they would let me know.
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