Taking Control Of Your Own Diet

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:

• What evidence is there for following a low protein diet for life?
• What has changed regarding the diet since I last was on diet?
• Where can I find recipes suitable for the low protein diet?
• Are there any cookery demonstrations I can attend?
• What protein substitutes are now available to me and how much would I need to take? Can I try them first?
• How do I know how many protein exchanges I start with and will my allowance change over time?
• How are my prescriptions set up? Do I need to pay for them? How will I receive my prescribed products? Can I get them delivered to my own home?
• How often do I need to take my phe blood spots? What phe levels am I aiming for? How do I find out what my phe results are?
• Can I have training in helping me to do my bloodspots?
• How often do I need to attend a clinic appointment? Will I get text reminders?
• What do I need to bring to clinic?
• What tests will happen at clinic appointments?
• How can I keep up to date with advances in PKU?
• Are there any websites/social media sites you would recommend?
• Am I at risk of developing any other conditions as I get older?

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:

https://www.nhsbsa.nhs.uk/dont-get-caught-out-penalty-charges/check-you-tick

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.