A&E

CMB

Who else finds it impossible to be at A&E? A chief consultant told me many years ago that no one with a neurological disease should be in A&E. I have consulted with Prof Duncan Young (retired) who worked on changing ICU. He agreed that A&E has too much noise etc for the sick. But also for me, the benches are too hard. I have case against A&E. Scope should take this up as a campaign. If you find A&E uncomfortable, it breaks the Equality Act, and you can complain through PALS. I cannot go to A&E.

Oxonlady

Hi @CMB, I've been in hospital a lot recently but sometimes I have said to the ambulance crew "I'm too ill to go to A&E". Invariably I am left in my wheelchair for hours in the waiting room, with no one to help me. After waiting for 10-12 hours to see a doctor, I am sent home, feeling much worse than before and my legs more swollen from being in the wheelchair all that time.

Several times I've had to be admitted in the last three months, to have IV antibiotics. But in order to be admitted to have to put up with many hours in A&E. It's not at all satisfactory. 

CMB

I identify with you completely. I'm so sorry. Recently, waits are due to COVID. Paramedics cannot take you anywhere else. If you complain through PALS, you may get somewhere, but this is for those with neurological disease who may have muscle spasms or numbness. You don't say if you have one. I also think there should be a space for those who need comfort in A&E. This is not about waiting time. It is about equality.

CMB

This would apply to anyone with a deformity, shaking, and PTSD. The benches are hard and it is noisy there. I need pain relief if I am taken there. I never go there voluntarily,

emberkid

I'm autistic and have a very hard time with sensory input.  Loud noises, crowds of people and bright fluorescent lights can all cause me to have a meltdown, which can look violent and frightening if you don't understand what's happening for me. 

I've been in A&E a number of times, often for things like concussions that I caused myself while in the midst of a meltdown.  When I arrive at the hospital, many times I'm already extremely overstimulated and nonverbal, just from the meltdown that sent me there in the first place, and waiting rooms with bright lights and noisy patients and doctors only exacerbates the problem.  It's a special kind of torture for me.

CMB

I understand, overstimulation and bright lights and noise. This is why Scope needs to campaign for change at A&E, so that the Equality Act is not broken, nor first do no harm. Are you able to contact your hospital through through PALS? You can ask Scope for help. I hope you will make contact.

Oxonlady

I have complained to my local hospital many times, saying that the waiting room is not suitable for disabled people. I specifically said that if you are stuck on a wheelchair without any assistance, you have no way of accessing toilets or anything else. 
They said I could ring reception to ask them to alert a nurse but this takes some time and doesn't happen quickly enough. There's nothing to guide disabled people as to what they should do if they need assistance. 
I suggested that a "disability nurse" should do frequent checks, asking people in wheelchairs if they need anything. Though this doesn't help people with invisible disabilities. 
In practical terms, nothing has changed. 
I don't know what else to do. 
Maybe there do need to be official guidelines issued about hospitals providing a better environment and facilities for disabled people. It will have to be from someone with greater authority than I have because all I have said to the hospital has not yielded significant enough changes. 
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CMB

Scope needs to campaign on this so that there is equality in A&E. Contact Scope. I have but no reply yet. I feel for you but to some degree everyone in A&E experiences this. There are call bells I discovered in August. I'm so sorry but just now I am in bed in great pain with an injury. Please contact Scope and draw their attentention to this post. I wish you every success in your endeavours. Thank you for joining the thread again. You need to state the Equality Act and First Do No Harm.

Oxonlady

Hi @CMB, sorry to hear about your injury and being in pain.
Has the pain improved at all during the day? Take care. 

CMB

No, it has got worse and my arms and legs now tingle. Thank you for asking.

SueHeath

Morning @CMB i hope your okay, have you had medical assistance with your injury.

Oxonlady

Hi @CMB, have you seen a doctor about your injury? You could either speak to your GP today or call NHS 111?
All the best. 

CMB

I know the drill. I appreciate your concern.

CMB

SueHeath said:

Morning @CMB i hope your okay, have you had medical assistance with your injury.

Yes, but I need more. Thank you.

SueHeath

Please phone the Doctors or 111 to see if they can help @CMB just to make sure this is normal for your injury, i would do it this morning don't wait.

CMB

I am an excellent manager of my very rare and complex health. If I need hospital, I will speak with an emergency call dispatcher. I have pain relief, I do appreciate your concern.

SueHeath

Good to hear that @CMB just worried me when you mentioned tingling in your arms and legs. 
This sounds like something you get or was expecting.

Tori_Scope

How are you feeling today @cmb?

CMB

I am OK thanks. I have slept a lot as it is part of the healing process.

jesselizabeth07

A&E was very interesting experience for me, I have severe anxiety and I would say I am quite autistic and undiagnosed medical PTSD, so I was rushed in cat 2, bleeding to death, I had to wait outside because A&E was packed, I was being overstimulated, i waited around 5 hrs and finally put on the ward where my heart rate was 140 and my temp was 40.2 and I was being checked every hour…all well now with 3 pints of blood. 

CMB

Tori_Scope said:

How are you feeling today @cmb?

Why haven't you picked this up to campaign? Those of us with neurological disease suffer discrimination each time we need A&E. I am bitterly disappointed.