Health: transition to adult care
Turning 18 means your child will be transferred from paediatric to adult care teams across endocrinology, dietetics, mental health services and all other specialists they see. Although this should happen automatically, delays at this stage can mean gaps in care and missed referrals.
Managing referrals to adult care teams
The PWS Consensus Guidelines contain detailed recommendations from expert clinicians about transition to adult care. Please ensure your GP, Endocrinologist and Community Paediatrician refer to these.
Each clinician you see should make a referral to an adult team if ongoing care is needed, well in advance of your child turning 18:
- Spinal surgeons
- Dietitian
- Speech and Language
- Physiotherapy
- OT
- Respiratory
- Cardiology
- Gastroenterology
Special care needs to be taken to ensure smooth transition in the following areas:
Endocrinology
It is essential that people with PWS transition to the care of an adult endocrinology team.
Adult endocrinologists are needed to oversee hormone replacement and growth hormone therapies.
The PWS Consensus Guidelines include guidance on the endocrine care young adults should receive
https://www.pwsa.co.uk/PWSBestPracticeGuidelines
Community Learning Disability Team
We recommend that everyone with PWS should be under the care of a Community Learning Disability Team as an adult.
This is a multidisciplinary team including LD nurses, psychologists, and many other specialisms.
Your community paediatrician, GP, or CAMHS should be able to refer you.
It is quite common for people with PWS to be told that they do not meet the threshold for these teams. If that happens, contact our support team for assistance.
Mental Health Services
Many people with PWS require ongoing psychology and psychiatry input for medications. Often this is more suitably met under LD mental health teams (see above) than generic adult mental health teams that are not always equipped to understand the impact of the complexities of PWS on mental health needs.
Consent and managing your child's care
Once someone becomes an adult, parents lose the automatic right to oversee and manage their child's health records, appointments and prescriptions unless special arrangements are put in place.
If you don't have an LPA (Lasting Power of Attorney) in place, your young person will have to record their consent for you to do this.
Your GP surgery is the best starting point for getting these arrangements in place. We've set out the steps you need to take here:
GP Practice
Arrange an appointment with the GP practice.
Request that you are:
- recorded as the main carer
- added to GP records as someone information can be shared with
- copied into appointments where appropriate so none are overlooked or missed
- included in medication discussions
- noted as the primary contact/nominated person/Next of kin
Your young person will need to consent to you continuing to manage their care to put this in place.
Check that your young person is on the learning disability register.
Ask whether the surgery can record reasonable adjustments under the NHS Flag system. Reasonable Adjustment Flag - NHS England Digital.
NHS App
Ask your GP to link your profiles and add proxy access for you to manage appointments, prescriptions and oversee records for your child through the NHS app.
Information:
Ask her consultant and hospital and any other health professional to ensure you are notified of appointments and letters as her nominated person.
Pharmacy
Make sure the chemist has you on record as the person supporting your young adult so that you can continue to manage their prescriptions.
Lasting Power of Attorney and Court of Protection Deputyship
Most people with PWS will continue to need significant help managing their health and care throughout their lives. For this reason we advise that everyone with Prader-Willi syndrome should have an LPA for health and welfare or a Court of Protection Deputyship in place once they are an adult.
