Preparing For Hospital Visits - Surgery and Appointments
Knowing that you may have to go to Hospital for any reason can scare the hell out of normal people, but when you're Aspergers it can send you spiralling into a Meltdown.
Hospitals are not the enemy! The Hospital might be bigger, with more sensory information to process, sick people and well it's just not a nice environment to be in general but it is a place that we have to go from time to time against our will.
For whatever reason you have landed yourself into hospital, through a referral from the GP or if you're unfortunate enough to be in A&E it can seem like preparing for the worst news you're ever going to hear in your life. But don't threat, as I have some helpful advice to avoid those anxiety attacks, Medical Jargon confusion and making sure you feel comfortable in a strange smelling environment.
Hospitals as I stated before are places with a lot of sensory information in a place with bright lights, strange smells, loud and constant noises from machines and lots of people in a small space can all aid in overloading your senses to the point where you need to leave.
Thinking about how you are going to get there and whether or not you can attend is the first step. If it is a problem or you need to rearrange your appointment you will have to ring the Hospital's Booking Office to change your appointment depending on your circumstances. The phone number will be near the bottom of your letter. It will have the opening and closing times for the booking office and they will rearrange your appointment for a time or date more suitable to you.
You need to be aware that you might be admitted or having several tests whilst at the hospital. It's awful and sometimes painful and not to mention embarrassing but it needs to be done. So things to look out for may be in the list below:
Keywords that scares the hell out of you may include:
Always ask if you don't understand, it seems silly and you feel stupid but we all have to do it as we don't have a medical degree.
If you know why you have been referred for whatever medical reason do some research on it in advance. It might make you feel better and also you will understand the terminology a little bit better and have a little bit more understanding.
Tip:
I would recommend some continuity, so if you have seen one Doctor and have a good relationship with them always ask if you can be referred to them rather than seeing someone new who might not have all the information they need. Sometimes Hospitals and even Doctors Surgeries are funny about it but you'll have to make a point of the fact you have Aspergers Syndrome and if you see someone you don't know you'll be extremely anxious.
I have been unfortunate enough to be in and out of Hospitals since I was 15 years old for many a different reason to do with different aspects of my Health and Wellbeing. In the last year my visits to different Hospitals has been down to the state of my health at the moment. I now know that I will have to have Minor Surgery as a Exploratory Test and that means preparing for something that I really don't like.
Hospitals as I stated before are places with a lot of sensory information in a place with bright lights, strange smells, loud and constant noises from machines and lots of people in a small space can all aid in overloading your senses to the point where you need to leave.
If you are a patient, it is going to be a little bit difficult to leave a ward without someone asking you where you are going. If you are in the situation where you have to stay in hospital or even if you have to wait in the hospital to see a consultant.
This has happened to me where you sit on a ward for more than an hour and I was gagging to go outside.
However this does depend on the type of referral you get, if it's a letter through the post, it will have the exact date and time of your appointment and begin to put certain coping strategies in place as well as thinking about how you are going to travel to hospital and other arrangements.
The first thing I would think about is Travel Arrangements.
- How am I going to get to the hospital?
- Do I need someone to take me?
- Will I need support while I am there?
- What sort of things do I need to take with me?
Understanding how you are going to get there, if you will need assistance and also general support whilst at the hospital is really important. This usually might be your carer or parent.
Thinking about how you are going to get there and whether or not you can attend is the first step. If it is a problem or you need to rearrange your appointment you will have to ring the Hospital's Booking Office to change your appointment depending on your circumstances. The phone number will be near the bottom of your letter. It will have the opening and closing times for the booking office and they will rearrange your appointment for a time or date more suitable to you.
The only problem with cancelling your appointment will be that your treatment or appointment will mostly likely be pushed back to later than you expected unless there is a cancelation nearer to the original appointment date. It is worth to note down the secretary of the consultant or doctor who you are seeing (You can get the number from the Booking Office or main switch Board of the Hospital) to see if you can rearrange the appointment to an earlier date. Usually they will transfer you back to the Booking Office but it is worth a try!
Travel Arrangements:
Hopefully you will have someone to take you to the hospital... again this will be your carer. If there is no one available to take you to the hospital it might be worth ringing the hospital and finding out if you can access patient transport to the hospital. I'd only use this service if you are going for Routine Tests (Ultrasounds in particular where your Bladder has to be full and going on the bus might not be the best option), minor surgery or are a day case at the hospital. If you are having other treatment like major surgery or routine surgery, it might be worth being admitted and staying in over night and then arrange to be picked up the next day.
Usually this situation will not happen and if you or your carer cannot attend the appointment, step 1 of rearranging the appointment is your best option.
Will I need someone there to Support Me?
Simple answer is yes!
The actual challenge of going for a hospital appointment is getting there. You will need someone to help you and support you and who ultimately understands the way you are feeling and thinking. With appointments you are asked a lot of questions about your health and your family's health. I have no idea what my family history is, so having someone there who knows it first hand might be helpful.
Also having someone with you is relaxing. You have someone to talk to and also distract you from what is going to happen next.
Also Doctors are very good at using medical Jargon or terminology while you stare blankly at them wondering what the hell they have just said to you. If you need to ask them to repeat what they have just said but simplified. If you can't do that the other person there will ask for you.
What will I need to take with me?
First things first, you will be asked for a list or to bring any medication you might be taking at the moment with you to the hospital.
After that it will be dependant on the type of treatment you are receiving when you get there. Coping Strategies are important!!!
Pack what you think you need,this might be a MP3 player, definitely a phone charger or tablet charger. I used to take my tour books of my favourite band with me so I felt comfortable or even your favourite pillow or cuddly toy from home!
Also see your GP for any type of sedating medication if you know your anxiety will lead you to a meltdown. It's better to be sedated before you go into the hospital in the first place. Also plan ahead and have a bag on stand by with bits and pieces that you will need if you are required to stay in hospital for a night or more.
*NOTE*
With Minor Surgery or Major Surgery you will need to not eat or drink for up to 6 hours before your procedure. If you have taken any medication before going into Hospital make the Nurses or receptionist know before you are admitted. It will then be put into your notes and also will inform any staff taking care of you.
Also see your GP for any type of sedating medication if you know your anxiety will lead you to a meltdown. It's better to be sedated before you go into the hospital in the first place. Also plan ahead and have a bag on stand by with bits and pieces that you will need if you are required to stay in hospital for a night or more.
*NOTE*
With Minor Surgery or Major Surgery you will need to not eat or drink for up to 6 hours before your procedure. If you have taken any medication before going into Hospital make the Nurses or receptionist know before you are admitted. It will then be put into your notes and also will inform any staff taking care of you.
If you know you are going to be in for a while:
Comfy PJ's (I usually go for soft and snuggly!), Wash bag including clean tooth brush and toothpaste, shower gel(your favourite might make you feel better), sponge or shower puff, Hairbrush, Shampoo and Conditioner, sanitary stuff (just in case as you never know) as well as Comfy clothes and underwear.
Also pack all the things you will need as a coping strategy as mentioned above.
IMPORTANT:
TAKE ANY MEDICATION YOU ARE TAKING AT THE TIME WITH YOU.
I can't actually stress how important that it is as it is important from a medical point of view.
Also inform the hospital of any dietary requirements that you may have Wheat,Gluten and Lactose Free (Allergies), Vegetarian, Vegan etc.
IMPORTANT:
TAKE ANY MEDICATION YOU ARE TAKING AT THE TIME WITH YOU.
I can't actually stress how important that it is as it is important from a medical point of view.
Also inform the hospital of any dietary requirements that you may have Wheat,Gluten and Lactose Free (Allergies), Vegetarian, Vegan etc.
Planning ahead, even if the decision is rushed will save you a lot of heartache and trouble on the other side!
When you are at the hospital for any visit, Routine, Emergency or Surgery these things might need to be addressed. It may seem over the top or scary but it needs to be taken into account.
Keywords that scares the hell out of you may include:
- Blood Tests
- Surgery
- Exploratory tests (minor Surgery)
- Sedation
Always ask if you don't understand, it seems silly and you feel stupid but we all have to do it as we don't have a medical degree.
If you know why you have been referred for whatever medical reason do some research on it in advance. It might make you feel better and also you will understand the terminology a little bit better and have a little bit more understanding.
Tip:
I would recommend some continuity, so if you have seen one Doctor and have a good relationship with them always ask if you can be referred to them rather than seeing someone new who might not have all the information they need. Sometimes Hospitals and even Doctors Surgeries are funny about it but you'll have to make a point of the fact you have Aspergers Syndrome and if you see someone you don't know you'll be extremely anxious.
Changing into Hospital Clothing:
I HATE THIS!!!!! I officially can not stand those gowns or the fact that you have to wear paper underwear when I'd rather wear my own. Even if you are on your period you still have to wear those paper underwear if you are going into theatre.
They are horrible and sometimes I even wonder if someone died in it before they washed it and put it on me. Unfortunately you can't not have your own clothing on for whatever reason and the Doctor, Nurse or even Surgeon will not take no for an answer even if you say hey I'm Aspergers.
In this case it might mean just going with the flow, I'm sorry to say this but it's the only thing we cannot avoid. Also knowing that you will have to have wear it might cause some sensory problems to occur including your skin itching and feeling like you have bugs crawling under your skin.
I would just have to say not to think about where the gown has been in the past and take comfort in the fact it's been washed. You can always have a shower afterwards to get rid of any discomfort and make you feel like you again.
If you want to find out any more information about preparing for an Operation follow the link below:
http://www.nhs.uk/Conditions/surgery/Pages/the-day-of-the-operation.aspx
Also go to National Autistic Society to find out more about My Hospital Passport Scheme via this link:
http://www.autism.org.uk/living-with-autism/out-and-about/my-hospital-passport.aspx
If you need any assistance filling out the form, ask a family member or parent to help you.
I HATE THIS!!!!! I officially can not stand those gowns or the fact that you have to wear paper underwear when I'd rather wear my own. Even if you are on your period you still have to wear those paper underwear if you are going into theatre.They are horrible and sometimes I even wonder if someone died in it before they washed it and put it on me. Unfortunately you can't not have your own clothing on for whatever reason and the Doctor, Nurse or even Surgeon will not take no for an answer even if you say hey I'm Aspergers.
In this case it might mean just going with the flow, I'm sorry to say this but it's the only thing we cannot avoid. Also knowing that you will have to have wear it might cause some sensory problems to occur including your skin itching and feeling like you have bugs crawling under your skin.
I would just have to say not to think about where the gown has been in the past and take comfort in the fact it's been washed. You can always have a shower afterwards to get rid of any discomfort and make you feel like you again.
If you want to find out any more information about preparing for an Operation follow the link below:
http://www.nhs.uk/Conditions/surgery/Pages/the-day-of-the-operation.aspx
Also go to National Autistic Society to find out more about My Hospital Passport Scheme via this link:
http://www.autism.org.uk/living-with-autism/out-and-about/my-hospital-passport.aspx
If you need any assistance filling out the form, ask a family member or parent to help you.
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