Moving on up
Most of you will have been going to the children’s hospital since you were a baby. You probably know everyone quite well. It is a really scary thought that from around the age of 16-18yrs that your doctor is going to start to say those dreaded words “It's about time we moved you to adult care!”
This shouldn’t be a sudden jolt out of the blue but should be part of a long journey that starts in your early teens. Hopefully by the time those dreaded words are uttered they won’t seem so bad because you will have been planning for such a time as this!
Here are a few tips that hopefully will help!
From the age of about 12-13yrs or earlier if you want to – ask your nurse to explain to you exactly what is wrong with your heart.
Once you have understood this – (it may take several visits to the nurse to understand things but don’t worry the nurse won’t mind) then go through your medicines and try to understand their names and why you take them.
By the time you are 15-16yrs of age try taking responsibility for taking your own medicines and remembering what time to take them and how many times a day.
Have a go at ordering your own prescriptions from your G.P’s and collecting them from your local pharmacy. This may seem a drag but if you are confident at doing these things then your parents will be less anxious about you going to university or moving out of the family home when you get older.
From the age of 14-16yrs try going in to see the doctor on your own without your parents. This could be just for a couple of minutes to begin with and your parents can be brought in at your request. They will also find this difficult as they will be used to taking control. Reassure them that they will still know all that has been said – but this process is important so that you gain confidence in talking to doctors and nurses yourself.
Don’t be afraid of asking to speak to the doctor or nurse in confidence about something that you do not want to discuss in front of your parents. Your wishes will always be respected. However if you are under 16yrs of age and discuss something that makes the doctors or nurses fear for your safety in some way then they may have to tell someone in order to protect you from harm. If this was the case then they then they would tell you who they would need to tell and why. It would have to be really bad for this to happen so please don’t be afraid to discuss things in private with the nurse or doctor.
Ask the team who look after you at the children’s hospital which adult hospital they will be referring you to. If you are coming to Manchester Royal Infirmary visit our virtual tour and be introduced to the team who will be looking after you including Linda Griffiths (Nurse Specialist in Adult Congenital Heart Disease). You can always contact Linda directly and she will arrange for you to visit the Manchester Heart Centre (Visit our virtual tour of The Manchester Heart Centre).
Your parents can go to www.manchesterheartcentre.gov.uk to find out lots of information as well.
If your care is being transferred elsewhere then discuss with the Cardiac Liaison Team at your children’s hospital and try to organize a visit before you move your care.
Cardiac Liaison Team at Royal Liverpool Children’s Hospital |
0151 252 5291 |
Mary Murray Gill McBurney and Amanda Howarth |
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Cardiac Liaison Team at Royal Manchester Children’s Hospital |
0161 922 2434 |
Mark Heyhoe |
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Click here to read information about the health passport click here.
