"Autism passport not being read"

I am an Autistic woman with ADHD. I was recently seen by Same Day Emergency Care (SDEC) followed by a few hours on the Acute Medical Unit (AMU); I was in hospital for about 17 hours. I was sent to SDEC by my GP with concerns regarding a headache with severe photophobia.

On this occasion, I had brought my Autism Health Passport, having previously experienced a traumatic period of care with SDEC (for which I previously submitted a PALS complaint). The passport was handed in at SDEC reception and added to my notes. Despite being added to my notes, only one member of staff in my entire period of care appeared to have read and followed any of the guidance in the document; this was a doctor I saw while in SDEC.

I am not aware of any other members of staff involved in my care having read the passport and making appropriate adjustments. Some examples of the issues I faced due to my passport not being read and followed were:

•The nurse who did my triage on SDEC firstly tried to stop my husband from accompanying me, going against the guidance.

•Several traumatic difficulties with cannulation – this is a key point in my passport and the difficulties could have been easily avoided had they read it first.

•I had to wait in the general waiting area for SDEC for several hours. This was a deeply sensorily unpleasant experience for me with the amount of noise, people, smells, and very bright light. The light level was particularly intolerable given the severe photophobia I had at the time. If someone had read my passport, they would see that this would be problematic for me and could have offered somewhere else to wait.

•For me it is essential to know what is happening and when. There was never any indication of how long wait times would be. There were some wait times on a poster in the waiting area but these were inaccurate. Agreed plans also changed suddenly.

• I was transferred to AMU and placed on a multi-bed ward. I was encouraged to sleep. Being there felt torturous: various strongly smells, unfamiliar environment, the constant beeping of machines, the radio on, the sound of other patients snoring or talking, and various staff members checking on patients every 20 minutes or so. Again, it is in my passport that this is deeply problematic for me.

In addition, the nurse who treated me in AMU was visibly confused that I could be Autistic but be an independent person. They asked me multiple times if I am independent, appearing confused each time I responded yes, and tried to direct questions to my husband.

The impact of these incidences is the following:

•Multiple panic attacks in the 72 hours after leaving the hospital (and still ongoing).

•Increased distrust in medical professionals.

•Increased fear of going into hospital.

Having complained over 18 months ago about the treatment of neurodivergent people in SDEC, and receiving reassurances that steps were being taken to make changes, I am really disappointed to find that many of the same problems persist.

In order to address the issues I experienced, I would recommend the following:

•Use the digital reasonable adjustment flag for incoming patients with additional needs (now a requirement in NHS England) to make all staff aware when a patient requires reasonable adjustments.

•All staff must read and follow reasonable adjustments, which includes communication styles, delivery of treatments, and environmental adjustments.

•Repeat any autism training for those on SDEC and AMU. This ought to include information on the wide variety of Autistic presentations; we can be very able in some areas and have high needs in others so you can never make assumptions.

•A review of wait times on SDEC to streamline processes and make wait times clear and accurate. People are much happier to wait when they know how long to wait for.

I fully agree with the investigations and medical treatments I received. I want to make it clear that I did not find anyone to be unkind or unprofessional during this most recent period of care. I am aware, as a healthcare professional myself, that everywhere is under severe staffing and monetary pressures. However, the vast majority of reasonable adjustments to do not require extra staff or money.