CanaryPod: Topple Uncaged – Antonia’s story, part two

THIS PODCAST CONTAINS LANGUAGE AND CONTENT SOME PEOPLE MAY FIND OFFENSIVE AND UPSETTING. THE VIEWS EXPRESSED IN THIS EPISODE ARE THE OPINIONS OF THE HOST AND GUESTS. THE GUESTS GAVE THEIR FULL PERMISSION FOR SHARING THIS INTERVIEW.

Welcome to series two of #ToppleUncaged!

Every week, The Canary will be bringing you an innovative podcast for the media landscape; hosted by me, Steve Topple.

In the second of two special episodes, I meet Victoria Cheney, mother of Antonia Payne-Cheney.

Antonia’s story

Her daughter’s story about battling chronic life-threatening illness, the NHS and the state is remarkable. It is one of hope, trauma, resilience and a family’s love.

I spoke to Victoria at length about Antonia’s journey and her current situation. She went from being an outgoing, active teenager to almost dying several times. Along the way were countless diagnoses and, what they both feel is clear medical neglect. You can listen to the second part of my exclusive interview below. Also, click here to listen to the first part.

Continue reading to find out more about what has happened to Antonia and how you can get involved.

https://www.thecanary.co/wp-content/uploads/2019/08/NEW-VICTORIA-PART-TWO-DRAFT-MP3.mp3

Listen on iTunes here.

The story continues...

In article one, I discussed Antonia’s story. You can read in more detail about the multitude of illnesses that she lives with, including hypermobile Ehlers-Danlos syndrome (EDS), mast cell activation syndrome (MCAS), postural orthostatic tachycardia syndrome (POTS), gastroparesis and craniocervical junction syndrome:

Antonia and her mother Victoria

It is hard to express the levels of “trauma” (as one psychiatrist put it) that medical professionals and the state have subjected Antonia to. Her illnesses have been ignored; care packages abandoned; experts in her illnesses not listened to; branded as a ‘drug seeker’; and her mother accused of making up her conditions. It has gone as far as Antonia accusing one consultant of physical assault. She now lives with post-traumatic stress disorder (PTSD) due to her experiences.

It is perhaps best to let Victoria’s voice speak about this. Below is an extract from an email she wrote to Baroness Blackwood. Victoria gave permission for The Canary to publish this. Blackwood is parliamentary under secretary of state at the Department of Health and Social Care. She also lives with EDS.

A damning testimony

As Victoria said to Blackwood:

You wrote... imagine being pushed from pillar to post with no one knowing what is wrong with you – steadily getting worse – that is so true – but imagine having that experience – being diagnosed by experts and being treated – getting on a path to better health and wellbeing and then due to a system acting wrongly – having your protocols by those experts and treatment plan taken away.

There being an insistence that you attend a hospital that not only does not accept the illness exists but actively blocks all referrals to other hospitals – a hospital that... made you really ill from their lack of understanding and states that they do not care about your quality of life.

A hospital where you were assaulted by [a] consultant overseeing you but their legal team and senior clinicians have made it impossible for you to... [bring] a case despite you reporting [it] to the GMC [General Medical Council], police and safeguarding.

Imagine having been treated so badly with your EDS – bullied in the extreme having to fund raise for lifesaving su...