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Metabolic bone disease transition for parents and carers

What is transition?

Transition is a process of moving from one place or stage of life to another; moving from primary to secondary school is a transition your child will have already made. As your son or daughter is approaching their teenage years we will be encouraging them to be more aware of their healthcare needs and take more responsibility. Our transition process begins around 12-13 and does not end until they have been successfully transferred to adult services.

When will they go to adult services?

We expect that they will be ready to transfer between the ages of 16-18 but some may be chose to move earlier.

Young adults vary in their approach to their own independence and have different needs. We aim to work as a team to co-ordinate the transition process so that it is tailored specifically to your child.

Where will my child receive their adult care?

This is a choice to be made by your child in partnership with you and the bone team. There are services for young adults with metabolic bone disease within the Sheffield Teaching Hospital NHS Trust; these are based at the Northern General Hospital. This clinic specialises in young adults.

Alternatively, you may prefer to transfer to a doctor that is more local to you. Please discuss this with your consultant at one of your child’s appointment.

Co-ordination of care

We aim to work together and transition your child as a team. For example if you see our team physiotherapists, the physiotherapists will contact the physiotherapists in the adult service to ‘hand over’ care.  It is possible that your child is seen by other professionals at Sheffield Children’s Hospital, for example an orthopaedic surgeon. We will liaise with them too.

Preparing for transition

We understand that the thought of change may be daunting. We endeavour to support you throughout the process.

Naturally, parents have an important role in this process; you are your child’s best advocate. You can help them prepare at home by encouraging them to talk to us about any worries they have and share with them your own valuable experiences. For example: how to book appointments; how to find out information or learning the names for regular medicines (for example paracetamol).

What happens next?

Your child will be invited to an adolescent clinic from the age of 12. The adolescent clinic will take the form of the usual clinic with the bone team (doctor/physio/OT), but with an additional review with our specialist nurse and another team member before the appointment. We would prefer if your child could manage the nurse review on their own; but understand if they are not ready for this step. The nurse will run through some questions designed for their age and stage; the first few are below.

Getting ready for transfer

There are some aspects of your child’s health that you may not have considered before now. Discussion may open up some new questions or health concerns. As they get older we hope that your child becomes more independent during their appointments whilst still maintaining partnership with you.

To give you an idea, here are the goals for early transition:

  Transition Skills
Beginning Transition I understand the differences in healthcare between children’s and adult hospitals.
I understand the need for my transition plan.
Early Transition I understand the medical terms/ words and procedures relevant to my condition.
I know what each member of my team at SCH can do for me and which person to contact if I had a question or problem.
I am confident to be seen on my own for some/ all of each clinic visit.
I know someone I can talk to when I feel sad or fed-up.
I understand what I discuss in clinic is confidential and private.
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Please note: this is a generic information sheet relating to care at Sheffield Children’s NHS FT. These details may not reflect treatment at other hospitals. This information is not intended as a substitute for professional medical care. Always follow your healthcare professionals’ instructions. If this resource relates to medicines, please read it alongside the medicine manufacturer’s patient information leaflet. If this information has been translated into another language from English, efforts have been made to maintain accuracy, but there may still be some translation errors. If you are unsure about any of the guidance in this resource or have specific questions about how it relates to your child, always ask your healthcare professional for further advice.

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