Tips from parents

patient and parent

Thanks to members of the Sheffield Parent Carer Forum who have worked with us to prepare some tips for parents/carers bringing children into hospital for appointments or ward stays.

The tips have been compiled with children with disabilities and/or special needs in mind, but should be useful for all parents and carers. If you’d like to contribute a tip, please contact us.

Be prepared

  • If your child has frequent emergency admissions have a hospital bag packed and ready to go.
  • Make a list of what you need to take with you – don’t forget your mobile phone charger and something to read.
  • If it is a planned admission ask if it is possible to visit the hospital ward beforehand so that your child knows what to expect. If this is not possible, ask for pictures to be sent home.
  • Familiarise your child with some of the medical equipment. Ask to borrow equipment from the hospital (blood pressure cuff, oxygen mask etc.) or improvise – use a soft clothes peg to simulate an oxygen monitor clip for example.
  • Before you go for appointments, write a list of questions you want to ask. It helps to prioritise the important things and stops you forgetting.

Make the most of technology

  • Put a summary of your child’s medical history and appointments on your phone or iPad.
  • Use your mobile phone to take a photo of the labels on your child’s medication so that you have a record of the dosage. It helps stop the confusion between ml and mg.
  • Take a portable DVD player for your child to watch while you wait to be seen.
  • Have a video on your mobile phone of your child when they are healthy and happy. Use it to show clinical staff the difference in your child when they are well and unwell.

Appointments

  • If your child finds waiting very difficult ask for the first appointment in a clinic.
  • If the waiting time is going to be too long for your child to cope with ask the nurse at the check in desk for a pager/bleep so that you can go for a walk or to the cafe. If this is not available, leave your mobile phone number.
  • If you know that your child will need a blood test ask for some ‘magic cream’ to put on at home to save waiting time in clinic. The same applies to eye drops for ophthalmology.
  • If you have a lot of questions to ask, see if it is possible to send them by post or email to the doctor before the appointment.
  • If possible, video any worrying new symptoms that you wish to discuss e.g. a new type of seizure.
  • Ask if it is necessary for your child to attend every appointment. If they have to, try to take someone with you so that your child doesn’t have to sit through long discussions and you can concentrate on what is being said.
  • Ask to be copied in on any correspondence (reports, meeting notes, and letters to GPs) – this will help to keep you informed.

Admissions

  • If it is a planned admission ring ahead and explain your child’s condition and what they will need to make their stay as stress free as possible.
  • Find out exactly what will happen so that you can prepare your child.
  • If your child is most likely to be admitted in an emergency situation, think about visiting the ward when they are well (perhaps after an outpatients appointment) so that staff can meet them when they are not in crisis.
  • If you know that your child is going to have a general anaesthetic think about other procedures that could be done at the same time (e.g. dental work) and ask if it is possible.
  • Start planning for your child’s discharge and recovery as soon as they are admitted.

On the ward

  • If your child is likely to become very agitated or would find an open ward too noisy, then ask for a single room – these are limited but staff will try to accommodate your request if at all possible.
  • It can be very warm in hospital so wear loose comfortable clothes and take sandals or flip-flops.
  • At night on the wards it can be quite bright and noisy. Eye mask and headphones for you and/or your child might help you sleep.
  • Wards have parent rooms where you can make yourself a drink (bring your own tea, coffee and milk). Bring a travel mug with a lid if you want to take hot drinks back onto the ward.
  • If you end up staying on the ward for some time and can’t get home to freshen up, it is sometimes possible to use a shower in the parents’ accommodation – ask a member of staff for details.
  • Bring your own pillow/cushion.

Communication

  • Create a visual schedule of the hospital visit (bus > hospital > waiting room > doctor > x-ray > treat > home). Ask your child’s school or speech and language therapist to help with this.
  • Ask staff for an easy read version of the ward information pack. The Easyhealth website has lots of easy read leaflets for conditions and procedures.
  • If your child has a one page profile explaining their likes/dislikes and how to support them or a communication passport, then take it with you.
  • Some condition specific support charities produce alert cards for you/your child to carry.

Something Special

The BBC filmed an episode of ‘Something Special’ here at Sheffield Children’s Hospital in 2010 and many children find it reassuring to watch before coming for an operation.

The episode shows Justin following the story of a little boy called Ciaran as he comes to TAU, meets some doctors and nurses, has an anaesthetic for an ear operation and enjoys his toast before going home. Mr Tumble also has some adventures around the hospital as he searches for Grandad Tumble, who has been staying on one of the wards.

The entire programme is augmented with signing in Makaton.

You can watch the episode for £1.89 on YouTube or it appears on the DVD compilation ‘Something Special – Hello Mr Tumble’, currently on sale in the BBC Shop for £4.75.

If you have a specific request or if you need any further advice, please contact PALS.

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