I hope in sharing some of these thoughts with you it may help you to feel more empowered in requesting support and changes to make it a more equal service for you to access.
In a previous post 'Autism Friendly healthcare' I have outlined some of these adjustments more aimed at healthcare staff. I wanted to aim this one at autistic patients/ service users and their family/ support network, however feel free to have a read of my other post, Ill put the link at the end of this post.
The Equality Act of 2010 states that reasonable adjustments must be made for people with disabilities to help them to access services. This includes Autistic people
So what is meant by the term reasonable adjustments?
Quite simply it means putting steps in place to make it just as easy for those wi
th a disability to access healthcare as those without a disability. It incorporates a whole range of disabilities but my focus is on autism.
It is also important to remember that it may not be possible for your exact requests to me met due to a number of uncontrollable factors however in expressing what you find challenging it can help staff to adapt and support your needs in a different way. There is no risk in asking!
So firstly, Hospital Alerting
This is something you can discuss with your GP, medical or nursing team or if you are lucky enough to have a dedicated Autism Team contacting them directly. This can save you having to remind people that you are autistic every time you attend the hospital, whether this is a planned attendance e.g. an outpatient appointment or planned admission or not so planned such as presenting in the Emergency Department. In the trust I work in it means that when any 'alerted' patient enters the hospital as a patient the Autism team are made aware and subsequently contact the area the patient is in to ensure reasonable adjustments are being put in place ensure that your visit is as smooth as possible.
At present this is something that not all NHS trust will offer however 'The National Strategy for Autistic Children, Young People and Adults: 2021 to 2026'* outlines one of the strategies aims as:
'We know that autistic people often need adjustments to their healthcare for this to meet their needs, but that currently professionals cannot always identify that people are autistic or the adjustments they may require. That is why NHS England/ Improvement (NHSE/I) are developing 'digital flags' in patient records so healthcare professionals across the NHS are aware that someone is autistic and can tailor the support the provide accordingly. NHSE/I will work with 12 early adopter sites across regions to test this reasonable adjustment flag this year.'
So keep your eyes out as this may be something that isn't available at present but in the coming months may be on offer to you.
Secondly, something that may be beneficial to know about is Hospital Passports
This may or may not be something you are familiar with but they can be such a useful recourse for both you personally but also for health professionals caring for you. Some trusts may have their own version of a hospital or health passport or you may prefer to use the National Autistic Society I will link this at the bottom of this post along with the NAS guidance of filling out a health passport**.
The aim of a Hospital/ Health passport is to aid communication between you the patient and the healthcare staff caring for you. I would recommend completing your hospital passport at home when you are feeling well. If you are anything like me, you are probably in the best position to be able to think about it logically about this when you are in a 'safe' place and feeling well. Of course you can ask someone to support you in filling this out.
It is completely up to you how much detail you put on your passport, of course the more detail you put the less you have to communicate for people to understand you when you are maybe anxious or unwell or in pain. Some information is just basic details (name, date of birth, etc). There is a place to explain how you best communicate, to outline your sensory needs, how you may show pain and any thing else you feel is significant. It doesn't all have to be writing. You can include drawings, diagrams, photos etc.
I would really recommend having two copies of this. One you can ask to be kept in your hospital notes and one to keep for yourself. Hospital notes aren't always available when a visit is not planned or planned last minute so having one that you can supply can be really helpful!!
Thirdly, Easy Read Information
All hospitals should provide easy read information. Although designed primarly for those with an intellectual disability they can be helpful as they are written in a format that could be read in a similar way to a social story. They will often include images which can be really helpful in preparing yourself for an unfamiliar environment or procedure.
I will attach a Link*** at the bottom to the page to a site that provide easy read information and videos, the sight requires you to sign up as a member (for free) to give you full access). However do ask at your local hospital for their local easy read documents if you feel this would be a helpful resource.
Finally, and arguably the most important of all Communication!
I have touched on this already but I think it is so important to highlight that communication is key. As health professionals we want to make your visit or stay in hospital as easy and stress free as possible but sadly we are not able to read your mind (although this would be so so helpful sometimes!). Communicate what it is that may trigger you to become more anxious, and how we can help (or what we may do that would not help!). Let us know how you might show you are in pain. Nobody will be offended by you asking.
Communication can look differently to each individual so think about how it works for you. Is it though someone else communicating on your behalf, via email or phone ahead of your visit, though your hospital passport.
To finish off this post I thought it might be helpful to share some physical examples of what reasonable adjustments could look like in a hospital environment. This list is by no means exhaustive but something to start your thinking off...
Advocacy and Support
- Asking for someone to attend appointments with you
- Adjustments to ward visiting times
- Agreeing permission for someone to speak on your behalf
Anxiety
- Discussing appointment times (e.g. first thing in the morning)
- Regularly updating me about what is going on (e.g. why I am waiting)
- Give as much notice as possible to any changes (environment, appointment time)
Sensory
- Ordering food from a children's menu (if adult patient) as food may be plain and more familiar.
- Keeping main lights off, or wearing sunglasses when an examination light is being used
- Wearing noise cancelling headphones
- Alternative quiter places to wait to main waiting area
Physical
- Please tell me before you touch me
- Arranging visits to a ward to see the physical environment before planned admission.
Communication
- Please deliver information to me directly, clearly and slowly
- Please write down important information as when I am overwhelmed I may forget
- An Agreement in place that X can communicate on my behalf (or be contacted on my behalf)
- Please allow me additional time to process information
If you are super keen and want some more reading these are some links to information I have referenced or refereed to in this post:
Autism Friendly Healthcare - https://guidetogrowingupautistic.blogspot.com/2021/07/autism-friendly-healthcare.html
*The National Strategy for Autistic Children, Young People and Adults: 2021 to 2026 - The national strategy for autistic children, young people and adults: 2021 to 2026 - GOV.UK (www.gov.uk)
** NAS Hospital/ Helath Passport:
National Autistic Society: Health passport - Health_Passport_A4_2020.pdf (thirdlight.com)
=National Autistic Society: Guidance to filling out a health passport - Health_Passport_Guide_A4_2020.pdf (thirdlight.com)
*** Easy Read helpful recourses:
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