Following the amazing response to a recent post 'what I wish every teacher could know' a similar post has been requested but with a focus on health care professionals. This is a topic I feel so passionately about and am so pleased to be able to write a post on. For those that don't know me I have just finished my degree in nursing (specialising in child's health). This has given me a unique view to the other side of healthcare.
I have been so pleased to be involved in the steering group of the Autism Service at Derriford Hospital and am so excited to see where this work goes in the coming months and hopefully years.
This post will be mainly focused towards health professionals and how you can best support autistic patients/ service users. But also helpful for autistic individuals to have a read. Some of the things suggested later in this post are reasonable adjustments that you have the right ask for under the Equality Act 2010 which states that reasonable adjustments must be made for people with disabilities to help them access services. This includes autistic people!
I also wanted to add in about supporting and making the most of autistic collueges. I think that this is relevant to more than just in healthcare and also will be too much for one post so I will do this in a sperate post soon.
Understanding the patient experience:
A clinical environment whether that is a community or hospital setting can be a really challenging place for autistic people for a number of reasons. There can be challenges around sensory overload, unpredictability, change in routine, etc
Imagine the following scenarios...
'You are feeling unwell so present at your GP practice. Before you have even got to this point you have probably been on the phone trying to get an appointment explaining how you are feeling to a stranger. Once you arrive at the practice you are in a waiting room. There may be others there, children crying, the radio on, reception staff answering calls. This can be a lot of noise. On top of this you are trying to keep an eye on the board or door to know when it was your turn to be called. You end up clock watching, your appointment is late. Eventually you are called in where you are asked questions, it may be that the health professional you are seeing needs to examine you. five minutes later the appointment is over. You are so overwhelmed that you forgot to ask the questions you wanted to. On top of all of this you are not feeling 100%, this can be confusing and add to sensory overload.'
'You have an accident while out walking. The only option is to head to A&E to get it checked. When you arrive it is busy. The signs aren't very clear as to where you need to wait etc. You don't know where or when you will be seen. The waiting room is busy, people are sat closely together. Some people have strong smelling perfume. Others are being called before you despite arriving after you. You are eventually called. You are seen in a busy bay. Doctors and nurses come in and out all asking questions. You are eventually given a plan and sent home with advice to come back if you are worried. What does that mean, I am worried now, that is why I have come in'
'You are admitted to a general ward with an appendicitis. You are in a bay with five other patients, all strangers. The ward is constantly busy with visitors coming and going, other professionals doing their rounds, nurses coming to deliver care to you etc. There may be a ward routine but it isn't yours. Meal times are at different times to home. The food is different. The bedding is cold and itchy. The ward is a hot environment with little ventilation. You are in pain and this is overwhelming. You are on medication that tastes odd and makes you feel a bit sick. All of a sudden a slot has become available in theatres and with very little notice you are taken away to theatres.'
These three examples are things that could easily be experienced by autistic individuals in a GP practice, Outpatient clinic, Emergency department, Minor Injuries unit, ward etc.
Sensory overload can be a big trigger of shutdowns or meltdowns within healthcare. The smells can often be overwhelming with the environment being kept so clean. Food can smell different to home, medication can smell very strongly. The same can be said for taste. Pain can really exacerbate the sense of overload. Lights can often be bright and often in the wonderful NHS things like flickering lightbulbs aren't a priority to be fixed!
Hospitals can be really unpredictable. Healthcare staff are working with a number of patients trying to prioritise care. This can be really hard on an individual that needs structure and routine.
What can you do to help:
Take your time to get to know the individual, building trust. Remember if you have met one autistic patient you have met ONE autistic patient. Each will need slightly different adaptations. Having said that the following can be a good place to start...
- Be clear in your language. Use direct terms such as this will hurt but it won't take long.
- On the note of communication allow additional time for processing. It may be helpful for the individual if you offer to write things down so they can refer back to the plan that has been formed etc.
- Be aware when it comes to physical touch. For some this can be over stimulating. Clear communication is yet again key, understand your patient, it may be necessary to limit physical touch e.g ask them to pull up their top so you can see without the need to touch.
- Try and be accommodating when it comes to timing. Work with the individual patient, explain to them that things might change and that we can't predict that but we will try our best to do X at this time.
- Be accommodating to support networks. During COVID this has been really tricky but if there is a way to accommodate someone to advocate for the individual this can really help both you and your patient.
- Where possible reduce sensory input. This may mean if an option, putting the patient in a side room rather than in a busy bay. Think about the lay out of the bay, is there a bed space that is slightly more tucked away?
- If discussing a planned hospital admission, try and facilitate individual to come and visit hospital, ward etc to become familiar. If this isn't possible consider taking photos of key areas such as the treatment room, toilets etc.
- When planning community/ outpatient appointments try to keep it to the same person seeing the individual. This allows for trust to be built.
- Again with community/ outpatient appointments think about the time of day. If you can avoid this individuals lunch time etc that can help with not breaking up their routine for the rest of the day.
- Try to be on time!! This may mean that it is best to see these patients first on your list before you are able to fall behind. If this isn't possible try and get a message to them to say you are running X number of minutes late.
- If in an environment where the patient will need to be in a waiting area think about the environment. This there a quieter area to wait. Explain to them how they will know its their turn etc.
- Whatever the environment be aware of reasonable adjustments and how this may look in your setting. Patients may already have a hospital passport* which can be really valuable when discussing what has previously been helpful or not so!
- Be autism aware. There is training out there, I would really recommended the free online training offered by e-LFH**.
I am aware that this has been a very whistle stop tour of autism in healthcare. I could add so much more but wanted to keep it clear. However I am so passionate about this topic and very happy to chat further!
Hannah :)
Further Recourses:
*National Autistic Society: Hospital Passport - My health passport (autism.org.uk)
** Autism Awareness (e-LFH) - Autism Awareness - e-Learning for Healthcare (e-lfh.org.uk)
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