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21
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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Survivor Room / Re: Should I complain about A&E? *Trig SH*
« Last post by Rob on August 25, 2019, 01:28:31 PM »
NHS Direct are only giving an opinion based on what information they have, and it's not the same as a face to face diagnosis. Sepsis is not something that you can catch, it's an eventual reaction to an existing infection which will have started with your SH, and that's why it's not easy to diagnose early on - but it can then happen quickly. Whilst you're in the hospital, you are actually under observation and any deterioration would be noticed. Apparently there is some software currently trialling at some hospitals that flag up sepsis possibilities quicker, but that's not available everywhere yet. The bottom line is that it's not easy to spot early on as the symptoms are pretty much the same as what you might expect from a normal infection, and that you were far safer in the hospital environment than you would have been at home - in fact the outcome could have been very different had you not gone to hospital.

Hospitals are busy and staff overworked with patients waiting on trolleys. In an ideal world things would be different, but with finite funding it's a case of getting through as best possible.

Perhaps if you worded things more as an observation rather than a complaint, as an autistic patient that developed sepsis?
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Survivor Room / Should I complain about A&E? *Trig SH*
« Last post by Vermilion on August 25, 2019, 11:33:45 AM »
I'm pissed off with the local A&E after I waited 13 hours to see a doctor when I had sepsis from an infected b**n despite NHS direct saying that it was a medical emergency. I even asked the nurse if it would be much longer and she clearly lied, if she had just been honest with me I could have gone somewhere else which also have been much less stressful- it's not like A&E is a wonderful place for autistic people. I do feel that there are things that they could do to help people with autism, there was so much sensory overload for me I had a meltdown and it's not the first time it's happened at that hospital. While I will not go to that hospital again (unless I'm rushed in via ambulance and have no choice) I do feel like I should inform them of these things for the sake of others who have no option but to use that hospital. I understand that emergencies can happen but I was also an emergency because I could've died from sepsis.

Thing is that I'm so grateful for the NHS that I feel guilty about putting in a complaint. The b**n unit I was transferred to have been amazing as was the doctor I eventually saw at A&E but I do feel like I waited at too long for treatment and maybe that the duty of care wasn't met.

What do you think? Should I write to them or am I just being unreasonable?
28
Research Topics / Re: Body Modification and Self Harm
« Last post by Taryn on August 14, 2019, 01:52:11 PM »
Hi everyone,

I've finished writing up my study so I've included a copy of a summary of the research below.

I will be sending a more detailed version to an academic journal. Hopefully it will be published so that other researchers can see the findings. I'm also planning to write about using instant messaging to complete interviews in more detail and send this to an academic journal too, as this is a new way of completing interviews.

Thanks for all your interest in this study.

Taryn
~~~~~~~
Experiences of Body Modification in Women with Experience of Self-Harm.

This report is a summary of a research study looking at the experiences of body modification (piercings and tattoos) in UK women with experience of self-harm behaviours. The research looked at how these women made sense of the links between self-harm behaviours and body modifications. This report talks about what is already known about these topics, then how the study was done, what was found, and what this means.

What do we already know?
Earlier research has found that self-harm behaviour is linked with a range of mental health difficulties. Self-harm behaviours are linked to a higher risk of suicide. Self-harm behaviour is more common in young adults, especially women. Some people use self-harm behaviour to cope with painful feelings. Self-harm behaviour can be used as a way of telling other people about these feelings.
Self-harm behaviours are similar to body modifications (piercings and tattoos) in some ways. Both self-harm behaviours and body modifications are common in women and younger people. Both self-harm behaviours and body modifications cause damage to the body in some way.
The current advice for coping with self-harm behaviours is that people who use self-harm behaviours could try different, less harmful, ways of doing this if they do not feel that they can stop the self-harm behaviour at the moment. The advice suggests trying things like pinching, squeezing ice or drawing on the skin. Some researchers think that body modifications might be used in place of self-harm behaviours.

Why do this study?
There has not been much research looking at self-harm and body modification behaviours together. The research that has been done has found that for some people who self-harmed by cutting, they stopped this behaviour when they got body piercings. This might mean that the action of getting a piercing could replace the need to self-harm by cutting. So, getting a piercing could be a way to cope with upsetting feelings. That research did not look at why people got the piercings or how they felt about them.
This study wanted to find out how people who had experience of self-harm behaviours felt about getting body modifications. This study wanted to find out what these people thought about the links between these behaviours.

What happened?
A poster about the study was shared in groups on the social media site Facebook that offer support to people who use self-harm behaviours. A page about the study was set up on Facebook with a copy of the poster and more information about the study. Friends of the researcher shared the poster on their personal Facebook pages and on Twitter (another social media site). Mental health charities in the local area and across the UK were emailed and asked to put up a copy of the poster. A post was put on the ‘Research Topics’ board in the discussion forum on the website of the National Self-Harm Network.
Eight women from across the UK took part in the study. They were between the ages of 18 and 45 years old. They talked about their feelings about body modifications and self-harm behaviours with the researcher. They also talked about any links they thought there were between these behaviours. Most of the people that took part talked to the researcher using instant messaging services like WhatsApp or Facebook Messenger. One person talked to the interviewer on the telephone. Each person talked to the interviewer once.
The researcher looked for important themes that came up in each talk. These were put together with the themes from other talks to make main themes. Themes that came up in lots of the talks might mean that lots of people have similar feelings about these topics. The main themes were linked with what psychologists already know about self-harm behaviours and body modifications.

What was found?
Two main themes came out of the talks: Coping Strategies and Body Modifications as Protective.

Coping Strategies
“I was going through a lot of negative feelings and pain was something that gave me a nice feeling.” – Emma
The women talked about using self-harm behaviours as a way of coping with their feelings. Some of the women said they got body modifications for the same reason. This was sometimes after they had experienced a very upsetting event. They said the self-harm behaviour was a way of controlling and coping with the pain they felt and that it helped to take their minds off other things that were going on.
The themes showed there were some differences between body modifications and self-harm behaviours. The women said their body modifications, especially tattoos, had a meaning for them. They did not say that self-harm behaviours had a meaning. They said they usually thought about getting a body modification before they got one. They said the self-harm behaviour was more often carried out when they felt strong emotions. They did not usually plan to use self-harm behaviours.

Body Modifications as Protective
“I thought I'd self harm but instead of it being cuts and people asking why I did it. I have people complimenting the art I have instead of judging the cuts” – Becky
Most of the women said they got body modifications instead of using self-harm behaviours. Some people said getting body modifications meant that they felt they had less need to use self-harm behaviours to cope with their feelings.
Most of the women said they had the same feelings when they got a body modification as they did when they used self-harm behaviour. Some people said they got body modifications after they decided to stop using self-harm behaviours. These people said it was important that they could feel pain but not cause it themselves.
Getting body modifications might be different to using self-harm behaviours. Getting body modifications could help to lower the urges to use self-harm behaviours. Getting body modifications cannot be thought of as a replacement for self-harm behaviours as there are some differences. For example, people have to pay for body modifications but don’t have to pay when they use self-harm behaviours.
The women said other people reacted in a better way to body modifications than they did to scars from self-harm behaviours. For some of the women the meaning of the body modifications was a reminder of things that were important to them or made them feel good. This might mean getting body modifications makes people feel like they need to use self-harm behaviours less often.

What does this mean?
These findings are important for people who work with people who use self-harm behaviours. If they can see a body modification, they could use this to talk about how the person was feeling when they got it. Getting a new body modification could be a sign that someone is feeling like they want to use self-harm behaviours. They should talk about this together to see if they need more help.

Are there any problems with the study?
All the women said they had experiences of body modification and self-harm behaviours. This was not checked in any way. This might mean that different people were talking about different behaviours.
All the women said they used self-harm by cutting behaviours. Different self-harm behaviours were not talked about or were talked about less often. This might mean the findings from this study do not apply to different self-harm behaviours.
None of the people who took part in this study had more ‘extreme’ body modifications like scarification or sub-dermal implants. People who have these more ‘extreme’ body modifications might have different experiences to those who took part. This means some of the findings from this study might not apply to people with these body modifications.

What next?
More research should be carried out in this area. All the people who took part in this study were women. They might have different experiences to men. More research should look at the experiences men have.
More research should look to see if the findings from this study apply to people with different forms of body modifications. Other research should also look to see if the findings apply to people who use different types of self-harm behaviours.

How will this information be shared?
All the women who took part asked for a copy of this summary. This will be sent to them by email.
A copy of this summary will be posted on the Facebook page for the study. A copy will be posted on the National Self Harm Network website. The Facebook support groups will be contacted to check if they are happy for a copy of this summary to be posted on their page. A copy of the summary will be sent to the charities that helped to tell people about the study so they can share this summary with the people they support.
A written report about the study will be sent to an academic journal. If this is published this will mean other people working in this area will be able to see the findings.
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Survivor Room / Re: Br****
« Last post by Rob on August 12, 2019, 09:47:45 AM »
 ::)
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Survivor Room / Re: Br****
« Last post by terrified heart on August 12, 2019, 09:11:33 AM »
A deal?? That’s the first Brexit deal anyone has managed  ::P:
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