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Medical appointments
These tips have been contributed by other parents, carers and professionals. We hope they will give you some ideas to try, but if you need further help why not post a question on our forums or talk to our site experts.
Take a step back
I have real problems with my daughter at hospital appointments or the dentist, doctor etc. I find if I take a step back she seems to respond better to the gentle encouragement of the nurses without me being around.
Take advantage of the anaesthetic
If going into hospital for any surgery be sure to check if there are any other procedures that can usefully be carried out under anaesthetic at the same time (e.g. dental work) as this could save the distress of further anesthetics.
Keep a summary
My daughter has frequent medical appointments with different consultants at different hospitals. Her medical notes are always 'lost in transit' so I’ve put a summary of her medical history on my iPad. It includes a list of professionals and medications, and it’s invaluable when we have an urgent admission. I can just hand it to the doctor.
Appts & Meds Tracking
A wipeable year planner works really well to keep track of hospital appointments and medications. For someone whose meds change regularly wipeable is invaluable. I also have a diary that I carry with me and co-ordinate wall planner and diary once a week.
Phone ahead
When my daughter has a doctor's/hospital appointment, I always ring them just before-hand to make sure that they are aware that she has autism and will not be able to wait for a long time, will find it difficult to cooperate etc. It sounds obvious, but it seems to make a difference for us.
Keeping on top of it
I got an A4 folder the with the dividers. I had a section for hospital consultant, physio, speech therapy etc and in each section I placed all appointment letters. I also put a sheet of paper where I wrote questions to be asked at the appointment. I took the folder to all appointments and would ask the questions, and would also write down the answers and anything else that was said, so the when I got home I would remember what was said. I don't use it so much now but I still keep the follow up letters in it, the ones you usually get 2 months after the appointment, saying what was said at the appointment and what is happening next.
Be organised
It is important to keep a diary to keep track of all the appointments and a notebook to write notes for any meetings beforehand, of questions to ask, and to make notes at the appointments e.g. of medication, treatment and also to make a note of the persons name and contact details - very important to keep track of this.
Information mine
I think the best tip is to talk and ask questions. I often ask the physiotherapist questions like "Have you seen how other mums cope with......" and "Do you know where we might start looking for......." She is a mine of information and will often point us in the right direction. On the flip side, we often get stopped when we are out with our son on his special needs walker and trike by people asking us where did you get this or how do you manage with.....
Other avenues
Don't expect doctors to hold all the answers. I always put too much anticipation in doctor's appointments as I hope they would be able to give me some insight and help. It might be a case of simply being realistic or that you may need to explore other avenues for help and answers.
Getting to the right specialist
I knew which specialist we needed to see. It took me 11 months to get an appointment with her because I followed the protocols. When I met her she told me that I should have emailed her directly and she would have helped me access her sooner. Give it a go.
Do both of you need to go?
When you have an appointment with professionals, find out beforehand if the person you care for needs to attend. If they do, try to take some one with you so that they don’t have to sit in with you during long discussions. Ask school/college if they can spare someone to help you or maybe a volunteer or even another carer (friends can help each other).
Make sure you see the consultant
I found out when attending hospital appointments if you want to see the consultant rather than the registrar you need to ask on arrival when you go to the desk. I thought it was just a case of pot luck.....now I always see the consultant by asking to have our notes put in his pile!
Ask for a copy
I always ask for copies of reports and minutes of meetings and keep them in a file. Also always ask to be copied in on any correspondence – it never ceases to amaze me that so many medical practitioners think it is acceptable to write to one another about children without the parent/guardians knowledge!
Is it the best time for you?
Don't be afraid to call the hospital/dentist regarding appointments for one that better suits you. Early morning or sometimes last appointment times are good as there is less waiting around.
List your questions
Before you go for appointments, write down a list of questions you want to ask.You'll be amazed how much you forget once you're in there.
Two heads are better than one
Take someone with you on appointments if you can, so you can concentrate on your questions and the other person can record the answers. If you go alone, you should try to take notes while you're in the meeting, but that is quite hard which is why having another person with you makes all the difference.
Every referral counts
Never turn down a referral. Sometimes when overloaded with appointments it can all seem too much but that one person could make all the difference and lead you in a totally different direction.
Telephone appointments
Try requesting a telephone appointment for follow up visits. So often our children are dragged out of school to sit around a hospital when the main thrust of the appointment is actually a discussion about management between the parent/guardian and practitioner.
Photo chat
When I take Paulo to see a new professional for the first time (optician, social worker, new teacher etc) I take a photo of the person and the environment (dentist surgery or classroom etc) so I can show it to him prior to future visits and talk to him about what to expect.
Bring it into play
John has lung problems and was constantly listened to by doctors. We bought him a cheap stethoscope to play with as a toy, then when doctors got their stethoscope, it was familiar to John.
Mary Poppins bag
I think it's important to always have little snacks and toys on you when going to hospital appointments. My bag has often been like Mary Poppins handbag! We have had some big waits and all day things and it can really help.
We need a break too......
Sometimes I would be presented with an itinerary for Beth to go to this department for this time and then that department etc and I had to put my foot down and tell them she is not a machine and would need to eat lunch sometime in the middle of all this! It would mean they would have to rearrange some appointments but they soon get the message if parents are firm, and you will find that the next time you are presented with a list of hospital departments to visit there will be an hour for lunch included.
Stand your ground
Read as much as possible about the person’s condition because the more medics think you know the more they will tell you. They will only tell you what they want you to know and will try and blind you with numbers e.g."her alkaline phosphotase is 162"..... Ask them what the normal range is, and what does an abnormal one indicate, what are the problems this might cause etc. Believe it or not, they won't tell you unless you ask. Don't let bossy nurses tell you what you can and cannot do as you are the carer/advocate.
GP's appointments
Always request double appointments at the GP’s because single ones are much too short for anything when it comes to special needs.
Watch the day and date!
Never have an op on a Friday – the doctors are not around so much over the weekend if you need them. Also, unless it is an emergency do not have an operation during August as this is when the new doctors start working so have much less experience.
Benefits applications
Keep dates of illnesses and names of consultants and letters, all are invaluable when applying for Disability Living Allowance (DLA).
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