Health and medical


3 Medical appointments

Prepare questions before appointments

Before attending medical appointments it can be helpful to try and write down all the questions you want to ask the doctors, along with what objectives you realistically want to achieve from the appointment.

Benefits applications

Keep dates of illnesses and names of consultants and letters, all are invaluable when applying for disability benefits.

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.

GP appointments

Always request double appointments at the GP because single ones are much too short for anything when it comes to special needs.

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 such as "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. 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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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/guardian's knowledge!

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!

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 someone 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).

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.

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.

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…

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 of medication, treatment and also to make a note of the person’s name and contact details - very important to keep track of this.

Keeping on top of it

I got an A4 folder with 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.

Phone ahead

When my daughter has a doctor's/hospital appointment, I always ring them just beforehand 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.

Appointments and 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.

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.

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 (such as dental work) as this could save the distress of further anaesthetics.

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.

Ask questions before

See if there is a way to forward your questions to your doctor ahead of time. Does he or she have access to email or phone appointments?

Get the details

If it is a yearly check-up or for vaccinations, find out exactly what will happen so you know what to expect and can prepare your child.

Do paperwork in advance

If there is any paperwork that you need to complete, find out if the forms could be emailed or sent to you first, so you can do it at home. This makes for one less thing to do when you arrive at the office.

Practise

Practise what will happen during the doctor’s appointment. Use dolls or role-play with a toy doctor’s kit. This is another way to help your child anticipate what is happening.

Visual schedule

Create a small visual schedule of the doctor’s visit (car – waiting room – talk to doctor – park – home)

Stay calm

Try to do a calming and relaxing activity prior to the appointment. Try to avoid rushing, so you and your child are not agitated coming into the office.

Provide demonstrations

If your doctor is comfortable, have him/her explain and demonstrate what they are about to do, on themselves or you first. Use the concept of my turn, your turn.

Expect the unexpected

There are going to be parts of a doctor’s visit that are not comfortable not matter how you plan for it and there is a possibility that your child will get upset (for example, shots and blood work). Be the reassuring voice; explain to your child what is happening.

Reward your child

Arrange for a reward or special activity after the doctor’s appointment. This is to celebrate a successful trip to the doctor!

Familiarise with medical equipment

Familiarize your child with what it feels like having various types of medical equipment used on him. If you can, purchase a real blood pressure cuff so your child can get accustomed to the strange sensation of it inflating around his arm. We have used a clothes peg to simulate the slight pinching feeling associated with an oxygen monitor that gets put onto a patient’s finger.

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Using these tips

These tips have been contributed by members of our online community. We hope they will give you some ideas to try, but if you need further help why not post a question to the community or talk to one of our community advisors. If you have any concerns about your health or the wellbeing of someone you are caring for, please consult a doctor or qualified professional.