Depending on the hospital you attend, the process of moving from paediatric to adult metabolic services will start at different times, but it can be as soon as your early teenage years. It may seem like a daunting prospect to leave the paediatric team you know so well but it will be a gradual process. You will be introduced to the adult team and they will set goals to help you start to take control of your low protein diet. This could include dealing with your own prescriptions, cooking for yourself, asking the home delivery company to call you rather than your parents or booking your next appointment in by yourself. Questions in clinic will be directed at you as opposed to your parents to help you build your own independence.
When you move to the adult clinic make a list of things to take to your appointments e.g. blood phe results you have recorded, the medical products you take, a copy of your prescription etc. It’s also helpful to take a list of any questions you have, for example:
How often will my clinic visits be?
Will I receive text reminders?
How often do I need to send in my blood spots?
Can I check my blood phe results online?
What are my target phe levels?
What tests will I have at clinic visits?
Will I have blood tests at every clinic visit?
How will I be kept up to date with any new products, medicines and future developments in the management of my PKU?
What could happen if I stop my diet?
Can I have a baby if I have PKU?
When attending the adult clinic for the first time, you, of course, can still take someone with you and if you are unsure of anything, just ask.
Up until you are 18 years of age (or 19 years of age if you’re in full-time education) your prescriptions will be free. After this you can buy a pre-payment certificate online. This is currently £10.40/month. You can purchase 3 or 12 months at a time. If you claim free NHS prescriptions when you're not entitled, you could face a £100 penalty charge, even if it's by mistake. To see if you’re eligible, follow this link:
Setting calendar alerts in your phone to order and collect prescriptions can help to ensure you don’t run out of product.
To make things easier for you, some of the companies who produce specially manufactured low protein foods and protein substitutes have home delivery services, who will deliver your product to your home and remind you when your stock is low. Speak to your metabolic dietitian about setting up these services.
Living away from home for the first time is an exciting prospect and planning in advance will be the key to success!
Informing the college/university of your PKU before you arrive may mean you can request a larger room to accommodate your supplies, have a fridge in your room or more space to store your food. If you require verbal or written support in order to explain your additional needs, your metabolic team can support you with this.
Think about if you wish to tell your new friends about your PKU and if so, how you will explain this. For some ideas on how to start the conversation, see Explaining PKU to Others.
If you have not done so before;
Practice cooking your favourite recipes from scratch.
Have a supply of suitable low protein snacks to hand. Click here for some easy low protein recipes.
Plan out a few weeks of meals, so you know what you need to prepare next.
Write out shopping lists before getting to the supermarket.
Batch cooking can be a useful tool to keep you on track. For more information on this, click here.
Speak with your metabolic team as to whether you should change your GP to where your college/university is located. If you need to register at your new location, your metabolic team can send a letter once you have registered in advance to explain your requirements and ensure your new GP is provided with an up-to-date list of your prescriptions. If you use a home delivery company, you will need to inform them of your new address.