Advocacy. It gives those who need it a voice, and it’s a powerful thing. When you’ve got a rare medical condition like PKU, it’s also very important. At it’s heart, advocacy is all about helping people to be heard about the issues important to them, helping to gain access to information, treatments and to have their voice heard when important decisions are being made that directly affect their lives.
In the UK we have the NSPKU doing a fantastic job of stepping up and giving the PKU community a voice, but patients have a role to play in advocacy too. Patients play an integral role in their own care, and according to Laura Landro, The Informed Patient columnist for the New York Times, patients can often improve their treatment outcomes by speaking up and advocating for themselves.
Being your own advocate might sound intimidating, but it isn’t as hard as you might think. You can advocate for yourself by:
- Seeing clarification when you don’t understand something
- Do your own research
- Be assertive – ask the tough questions you want answers to and expect an adequate response. Getting answers helps you to trust your clinic team more and may give you closure, hope or inspiration
- Reach out for help when you need it. Don’t feel guilty about ‘bothering’ your metabolic team. It is their job to support you.
- If you’re struggling then speak up. Report your symptoms to your clinic. Apart from enhancing your level of care, it also helps clinicians to paint a broader picture
- Keep track of your own treatment
- Get involved in patient organisations. The NSPKU has been running an excellent awareness campaign this year and more voices make a louder noise that is harder to ignore!
What are your tips for advocating for yourself?