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Medical appointments & medicines
These tips have all been sent in by other parents, carers and professionals in the learning disability community. We hope they will give you plenty of ideas to try, but please remember Netbuddy is not responsible for the information provided or any of the activities suggested.
Natural pain relief
When our hospital pain team prescribed valium, with their approval we tried this instead and it worked brilliantly, they were amazed to see it stopped our sons post op spasms and they now recommend it: lemon balm tea, mag phos Martin and pleasance spray. Westmead childrens hospital are now looking to trial it.
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.
Swallowing bitter pills
My daughter takes a very bitter-tasting AED. I import empty capsules from the US (can't find any in the UK) and put the pills inside the capsules. That way, the pills dissolve in the stomach not the mouth & are more easily swallowed with food. One doctor was concerned the capsules might stop the medication being absorbed at the correct rate, but my daughter's paediatrican is happy with it. If you want to try this, check with your paediatrician first. www.capsuline.com
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.
Photo appointment
We send out a photo appointment letter for people with learning disabilities. This gives details of the department and the professionals who will be involved in the assessment.
Letter (279.0 KB)
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.
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 hoped 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 some one 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) then I take a photo of the person and the environment (dentist surgery or classroom etc) so I can show it to the Pabs 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).
Just in case
We keep a list/chart of drugs that Layla takes and put it where we keep the drugs so in the event of being unavailable, someone will be able to see what drugs are needed to be administered and the amounts and times.
Use all of the dissolving tablets
Tanya has medication in dissolvable tablet form and I have found that it is easier to put the tablets in an oral syringe, then draw the water up into it rather than dissolve the tablets in a cup of water. This ensures that all the medication is administered rather that some being left behind in the cup.
Liquid medicine syringe and bottle stopper
When you get near the bottom of a bottle of liquid medicine, instead of pouring it into the lid or a spoon (and making a sticky mess!) draw it up into the syringe to measure it, then you can get a bottle stopper device which fits into the top of the bottle and stays there, so you can accurately measure using a syringe straight from the bottle.
Tablet splitters
You can get tablet splitters, useful for cutting tablets exactly into two or four pieces (but very sharp so be careful).
Patches can help dribbling
For excessive dribbling we use Hyoscine Hydrobromide patches. It's like a small plaster which stays on for 3 days and is very effective.
Help with drooling
Charlie drools a lot which was a problem because his clothes were constantly wet around the neck and his mouth and hand got sore. He used to pull off hyoscine patches. About 12 months ago he was prescribed glycopyronium, not licensed in the UK but is in the US. He takes it 3 times a day and it has really helped reduce the secretions. It’s not a miracle cure, but it might help.
Swallowing medicines
Here’s what worked for us:
I crushed the tablets into some marmalade.
When she started on thyroxine tablets (which are very small) I taught her to put it at the back of her tongue and take a big mouthful of milk to wash it down. We put her tablets in one of those little measuring pots (they come with cough medicine etc.) and now she can swallow several quite large tablets at once with no problems.
Antibiotics, I bought some white chocolate buttons, poured out the medicine and balanced one chocolate button on the spoon too, so to get the button she had to take the medicine too.
No touching
For anyone who has dressings, stomas etc and who is prone to fiddle and pick we used all in ones (babygro's/rompers, Fledglings www.fledglings.org.uk make all sizes) and made access points where necessary using Velcro.
Boosting the immune system
Angela was susceptible to catching every little virus around as her immune system was poor and she was continuously ill. It was suggested that I put her on a daily dose of Vitamin C. I found Holland and Barratt supply Vitamin C in syrup form and we found this to be tremendously successful as have many of our friends.
Oxygen therapy
Oxygen therapy - The pipes get condensation when they are too long and cold. Keep the pipes short and wrap in a towel in winter to keep them dry. Keep the pipes short and warm
Nebuliser
We made a nebuliser stand out of a Microphone stand. We used some elephant tubing instead of a mike. We position it near to Laurie while she sleeps.
Keep it balanced
Beth had a stroke with weakness in the limbs of one side of the body. We involved both sides of the body equally to promote ‘whole body integration concepts’ e.g. put clothing on randomly on both sides, hold whichever hand is nearest when crossing a road (not just the unaffected side).
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