Outpatient Appointments in Adult Medicine

What’s it like? I hear you ask.
What happens? I hear you ask.
This is our story.
Both myself, Julie, and my husband, Samuel, are autistic. We are adults. We are in our thirties. I regularly get asked to attend outpatient appointments for different long term health conditions. Both myself, Julie, and my husband, Samuel, attend together because I like to know another person is there witnessing the appointments.
Before the outpatient appointment I ring ahead. I let the department, which ever one it maybe, know I am autistic and would like a double appointment as a reasonable adjustment to allow me more time to process the information.
On the day of the appointment myself, Julie, and my husband, Samuel, arrive at the reception we are often told the reasonable adjustment was rejected and it is only a single appointment.
We are called into the room with a consultant. The consultant has managed to be told I am autistic. Straight away the consultant turns to my husband and begins to speak.
Asking why is she here? Why has she been referred here? And often who are you?
My husband who finds speech hard manages to mumble I am autistic too.
The consultant stops.
The consultant looks at us both.
Then the questions begin again.
Why are you here?
I begin to explain.
How do you know that is a symptom?
I begin to explain.
But you have autism how do you know it isn’t just your mind playing tricks on you?
Here I stop. I pause. I freeze.
I begin to doubt myself. I begin to question myself. In side I am in knots.
The consultant continues talking but I am frozen inside. I no longer hear a word. I glance to my husband his eyes tell me he too is frozen. Lost for words. Not sure what to do. Dithering inside like me.
We are both stuck. Here in a room with a consultant who clearly doesn’t know much about autism and has an opinion of what autistic people are like.
We leave the room disheartened and confidence thwarted.
The scenario I have described above is sadly a regular occurrence in our life. It is rare we experience anything else.
We support one another the best we can but there are times when we are both lost for words and only our eyes can communicate with one another.
We do not have anyone else who can support us. We are deemed as able to manage as we have one another.
So back to the opening questions.
What’s it like? An outpatients appointment in adult medicine is distressing, overwhelming and judgemental.
What happens? Assumptions are made about your ability because you have disclosed you are autistic.
It seems disclosing you are autistic means all your symptoms are silenced and you are left to feel like you are a time waster. It leaves both me and my husband wondering why we make the effort to try to speak and why we make the effort to describe symptoms when they appear.

An Open Letter to Claire Murdoch and Ian Trenholm

Dear Claire and Ian,

Re proposals about using CCTV in ambulances

I apologise if you find the tone of this letter inappropriate, but I find what I am having to respond to in the contents of this document I was reviewing for work, ‘inappropriate’. I assure you my views are considered.

Every week, I sit in various meetings with people such as yourselves, who have the power to change things, and I ask the same question, “How do we know autistic people and people with learning disabilities in long term segregation are safe?”. Every week, I watch people roll their eyes, ignore me or give me a half smile.

This morning I got a message from a friend of mine who is in long term segregation. There are almost 100 people in long term segregation. The person concerned has been there over a year – in a room, with only a mattress. The person is watched 24/7 on CCTV. They hate the CCTV. They see it as breach of their Article 8 right to privacy. They are right. It does breach their rights, but, for some reason, CQC allow it.

Anyway, I am assured that this person is safe. But this morning I find out they aren’t safe, exactly as I have told you, time and time again. They’ve been subject to sexual abuse for the last eight months! Eight long, horrifying months of abuse!

Guess how much of it was caught on CCTV? None of it!

Now this isn’t surprising is it?! Whorlton Hall had CCTV in it. Many units I was in had CCTV. The only thing that CCTV was ever used for was to criminalise. CCTV criminalised my friend – it didn’t save them from abuse. Instead it abused them.

And now I find you plan to ‘watch and record’ us while we travel in an ambulance when we are at our most vulnerable. How would you like to be recorded, for everyone to see, when you are at your worst?

You see last week, I read a document about changes to ambulance transfers to make them better… one of the main solutions was to record us on CCTV. What a joke that draft document is.  Here’s why.

First of all, I’d like people to stop talking about me/us like we are a parcel out for delivery. Change the language to reflect the fact we are human.

This is a cage you transferred me in.

Second, there is nothing in the document about how autism or learning disability will be considered or supported. We make up a huge amount of the population of inpatient services. We spend the most time in hospital – usually more than 5 years. We are often transported hundreds of miles away from home. Why haven’t we been considered?

I was transferred probably more than 50 times. I have had to sit in a cage in those ambulances. I felt like a dog being taken to a dog pound. My legs were tied together, my hands cuffed behind my back, trying desperately to remain seated on a narrow, wooden bench, no seat belt. I’ve had to shit myself and piss myself and then sit in it for hours because you wouldn’t stop for me to go to the toilet. I had to sit with a bright light shining on me, cage rattling up the motorway experiencing the most awful and painful sensory overload because you didn’t consider my autistic needs, let alone my human needs. AND NOW IT IS SUGGESTED THAT THIS BE RECORDED ON CCTV? Seriously.

Yes people! The NHS and CQC want to install CCTV in ambulances! They want to record what I’ve just described. Apparently, the CCTV is being installed for our own safety. It didn’t keep me safe, it didn’t keep my friend who has been locked in a room for a year safe.

What will happen is that the CCTV will be used to threaten us and criminalise us. My friend above has been criminalised, but their abuse went unnoticed. When they, or I, or you kick off because we have been subjected to inhumane and degrading treatment (in our most vulnerable moments), staff can call the police and show them what bad people we are on the CCTV. And even more, when the CQC come calling, staff can show them some contrived scenes especially acted out for the benefit of CCTV that show what lovely, caring people staff are.

CCTV is not the answer to stopping abuse. The answer is paying the work force properly. Putting in place actual trauma informed care and services. Supporting people in their own homes. Treating people with dignity and respect.


CCTV is a breach of our human rights. Full stop. Let’s not legislate to further breach our rights!

We already have a reduced ability to advocate and challenge the system. If you are worried about patient safety then know that CCTV will only increase the power differential.

I appreciate CCTV feels like an easy fix. However, let’s start from the position of people’s human rights. Then it’s really clear that the addition of CCTV in ambulances is diluting rights.  It can’t possibly pass the proportionality test: is it lawful, legitimate, proportionate?

Please don’t put CCTV in ambulances. Kindly review how it is used – and abused – everywhere else.


Let me finish by asking you 3 questions:

How can this guidance justify CCTV as the least restrictive option?

What other alternatives that don’t breach peoples’ rights have been considered?

Why aren’t other alternatives mentioned/used?

Ian and Claire, Rightfullives would really appreciate a meeting to discuss this. We have some insights which we feel are important and need to be considered.


Best regards,


Alexis Quinn – Rightfullives

Self Advocacy- what is it and what’s happening to it

A guest blog by Jenny Carter

Self advocacy is where people with disabilities speak up for themselves.  This doesn’t need to be verbal communication the person can use other ways to communicate but communication is important to self advocacy. Self advocacy enables people to advocate for there rights needs and want they want explain to others what there rights are and enables people to stand up for their rights.
Continue reading “Self Advocacy- what is it and what’s happening to it”