poconnor<p>It begins: my first phone call from the surgery to confirm if I absolutely need my monthly <a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PKU</span></a> medicine “only it’s a bit expensive”.</p><p>Apparently, they plan to call to check this with me every month.</p><p>Going to head this off at the pass by getting my Clinic to write them a letter, and send them the <a href="https://pkutalk.com/tags/NSPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NSPKU</span></a> documents explaining pku to <a href="https://pkutalk.com/tags/GP" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>GP</span></a> surgeries 🤞🤞🤞</p><p><a href="https://pkutalk.com/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LivingWithPKU</span></a> <a href="https://pkutalk.com/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>RareDisease</span></a> <a href="https://pkutalk.com/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillness</span></a></p>