Adult Care in UK

[fionac66]

Hi - as you may know we have been working with the NHS to try to get a fully funded adult PCD Service which allows adult patients to be seen by a PCD specialist at least once a year for an 'MOT' with access to physiotherapy, ENT experts, fertility advice, dieticians and counselling. We need to provide yet more evidence to show why this service is required - so if you are an adult PCD patient living in the UK and you feel that your care isn't as good as it should be then can you contact us with your story? We will of course anonymise any information that you give us but it would be great to hear from you. Please email me by Thursday, 28th July 2016 Fiona at [e-mail]

[Dibble1]

Hi Fiona

Would a response from a soon to be adult service user help? D x

[fionac66 in reply to Dibble1]

Yes please - eg has transition been good , what concerns do you have about future care etc thanks

[Nutzruz]

Hello Fiona. I'm a 16 year old. I will be undergoing a transition into adult unit very soon and find this scary as I already know they don't care as much and it will be a lot different. I was found with PCD when I was a couple weeks old. My mum knew something was wrong and had to fight for the nurses to get a doctor to take a look. There definitely needs to be a change. It isn't as rare as people think. People go unfound and I almost did. Its the ignorance of all nurses and doctors. Hope this still matters