Transition was good. Everyone was friendly, helpful and caring
Support
As you take more responsibility for managing your health day to day, you will continue to have lots of support around you to do so. Alongside your healthcare team it can help to talk to your parents/carers or friends. There are also charities and organisations that understand your condition. They can all provide support in different ways.
Your healthcare team will be able to give you support and advice and talk through any questions or worries you have. They can help by:
- Teaching you about your illness, its treatment and any possible side effects
- Making sure you know when to get help and who to contact in an emergency
- Making sure you know about support networks available
- Making you aware of the importance of a healthy lifestyle.
On weekdays (9-5pm) you can contact the children's metabolic team on:
Metabolic Nurse Specialists Phone (non-urgent): 0117 342
6260
Phone (Urgent): 07867 644634 Email:
ubh-tr.metabolicCNS@nhs.net
Metabolic Dietitians Phone: 07795 684774 Email:
ubh-tr.IMDdietitians@nhs.net
Metabolic Secretary Phone: 0117 342 1693
If you need to talk to someone for illness advice and management outside these hours (such as at weekends or bank holidays) then you can phone 0117 923 0000. You should ask to speak to Paediatric Speciality Registrar for Metabolic Medicine (Bleep 6734). Please ask the registrar to seek advice from the on call Metabolic Consultant
When you move to adult services you can contact the adult teams directly. Do get in contact using the above contact details if you have any questions or are unsure who to contact though.
On weekdays (9-5pm) you can contact the Adult Metabolic Team at Bristol Royal Infirmary on:
Adult Metabolic Dietitian: Phone: 0117 342
7360
Adult Chemical Pathology Secretary: Phone: 0117 342
7708
Adult Appointments: Phone: 0117 342 6543
Alongside your healthcare team there are organisations that can provide both support and information. You might find the following ones helpful:
There are a number of organisations that support specific metabolic conditions including:
Having a metabolic condition doesn't just impact your physical health but can affect your mental health too. Metabolic Support UK have information and can help support you in looking after your health in both ways.
