It may be quite daunting to attend a clinic for the first time on your own or if you haven’t been for a long time.
Most metabolic centres now have an adult metabolic team so you will no longer need to be seen in the paediatric hospitals. You may be attending just to find out what is new in PKU or you may have already made the decision to return to diet. Remember you can always bring someone with you to clinic. Usually, in the clinic setting you will be able to see a doctor, and a dietitian.
It can be helpful to write down questions you have before you go, for example:
Always remember, if anything doesn’t make sense, ask for a further explanation.
Unless you have a condition which makes you exempt from paying for prescriptions all adults in the UK need to pay a prescription fee. 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:
Most companies now have a home delivery service that you can use to your advantage. Protein substitutes and low protein foods can be delivered straight to your home or workplace. For example, Vitaflo provide a home delivery service called Vitaflo at Home.
Finding your way around a kitchen can be tough if you’ve never cooked before and always relied on someone else cooking for you or used convenience foods. Similarly, if you aren’t used to cooking with low protein ingredients because you haven’t been on diet for a long time, it can be overwhelming. Having a bank of delicious recipes that you are confident to cook will help to make the low protein diet easier.
Choose 2 or 3 staple meals and practice them to perfection. Getting in the kitchen and feeling confident about what you are making could result in cooking low protein meals becoming a new hobby or even passion.
Batch cooking and meal planning can also help to make the low protein diet easier. Make a plan of your meals for a week and write a shopping list based on this. If you know what you’re having each day in advance, there is less chance of eating too many phe exchanges because you haven’t got the right food in the cupboards to make a meal!
There are plenty of tasty low protein recipes available here, for you to start getting used to this change in your diet.
For more information about how you can Live Life Well with PKU, click here.