I often think what is the worst aspect of dealing with a rare (mostly unheard) of Progressive disease… it’s not the disease.

How I am treated by health/social care is far worse then dealing with a life threatening incurable disease. I live in daily pain, I’m losing my vision, I’m having regular TIAs, Complex respiratory issue. The list is endless, yet I rarely cry that my body is failing but I’m frequently left in tears at the inhuman way I am treated and left to needlessly suffer by professionals.

@NadineDorries I am a patient in EUPT. We need a public inquiry. The trust runs on a culture of abuse and has not learned any lessons. I have been a patient since 2009. This is a trust wide problem. Currently having to go through a JR to get any care needs. There is 0 accountability. No lessons are learnt. I can give you 100s of examples of abusive care and practice. Doesn’t matter the evidence the trust lie and twists truths. Changing documents. Falsifying care plans. There is a systematic issue within the trust.