In 2021 Joshua graduated from UCLan with a first-class BA Hons in Film and Media Studies. He has created documentaries, films and is an avid script writer.
Joshua shone in the ‘Music and Me’ podcast series hosted by broadcaster and journalist Jonny Gould. During his podcast, Joshua shared his experience of Duchenne and living life to the full, as well as his love of jazz, the South Korean horror genre, watching Stanley Kubrick movies and the life of Miles Davies.
During a recent support call between one of our Support Officers, Sam and Liz, Josh’s Mum, they discussed what had happened to Josh and the family were keen to share his important story with you.
Josh hopes that other people in the Duchenne community are made aware of complications arising in choice and placing a DNACPR.
A heartfelt thank you to Joshua, Liz and Jason for allowing us to share their personal experience with you.
If you are affected by this story, please contact the Action Duchenne Support team info@actionduchenne.org to arrange a time to talk.
Living life to the fullest – by Liz Waywell
Just before Christmas Josh was admitted to hospital with dangerously low sodium levels, because (trying to keep him well and hydrated) I had been giving him too much water and he was put on restricted fluids.
This led to constipation, which caused water retention and a temporary catheter was fitted. After six weeks and delays, it was finally removed, only for a urine infection to take hold.
He was admitted to Intensive Care Unit (ICU) at our local hospital for a week, with Urosepsis (when a urinary tract infection spreads to your kidney). With great care and pure determination from Josh, he has been home for six weeks now and with a new nutritional regime, he is getting stronger every day.
His time on ICU
During that time on ICU, with Josh very poorly, I was taken aside by one of the ICU consultants. She said she didn’t know me or Josh, but after speaking to Josh’s respiratory consultant, she would never forgive herself if she didn’t discuss placing a DNACPR (do not resuscitate or ventilate) on Josh.
Obviously devastated, but unable to do anything about or discuss it with Josh, I would have to address this when Josh was discharged. To my dismay and disgust, upon leaving ICU a piece of paper was slipped into Josh’s belongings.
This was an official do not attempt cardiopulmonary resuscitation (DNACPR) form, which I had not seen before or agreed to. On returning home, I have found that doctors can place a DNACPR on someone, without their or their family’s permission, if they deem it the right thing to do.
Since speaking to his respiratory consultant, he had not agreed to a ‘blanket’ Do Not Ventilate, but a case by case, with discussion. Through our fantastically supportive GP, we have found that the DNACPR is only at the hospital and not anywhere in the community.
Advocacy and making decisions
Having a conversation with Josh, something no parent should have to do, we discussed everything and every outcome, so he could decide for himself.
His wishes – he does not agree to DNACPR – have been put on his GP records and we are making it clear to any health care professionals we come across.
As he said, they do not know him and his strength and powers of recovery (he was incubated twice, 5 years ago when he had pneumonia and recovered to go to University and obtain a First!).
We have made a complaint to the hospital and want the DNACPR taken off and his wishes put on record there which is still in process.
In short, a consultant has seen Josh has Duchenne and written him off. On two previous occasions when Josh has been at A&E, two different consultants who had never met us, came up and said as Josh had Duchenne, had we considered DNACPR.
Everyone we have spoken to is appalled and frightened that this has happened to Josh, but can happen to anyone.
Liz
‘Looking to the positives because that’s what you do‘
With the support of his loving family and Community Neuromuscular team, Joshua is getting stronger everyday. During lockdown Joshua lost strength in his arms, he is working incredibly hard with the physiotherapists to build the strength in his thumb to be able to drive his new wheelchair independently, which has been specially adapted to allow him to drive it from the base.
As with all things post-COVID there is a lengthy wait for parts but it is on its way! The family have also chosen a new Wheelchair Accessible Vehicle (WAV) which will enable Joshua to have more privacy on journeys and reduce the need to use public facilities when out and about.
In the coming months Joshua will be sharing his experiences, knowledge and passions with you in a series of blogs for Action Duchenne. We are absolutely delighted to be welcoming him to our wonderful team of contributors.
Joshua will also be sharing his knowledge and lived experience in an online workshop as part of our All – through Support project later this year.
It is only through continued support from our amazing donors that we can help more children, young people and adults living with Duchenne across the UK and globally. If you or your family have received our support, please help us to help others.
Science on Tour – a parent’s perspective
