Sometimes in life you meet people who feel like forces of nature. This is certainly true in the case of IPF member Dani Czernuszka-Watts!
Driven, determined, compassionate, Dani is an effervescent bundle of energy whose passion for sport and for her role as an ambassador for the Spinal Injuries Association (SIA) is infectious.
Dani has been an IPF member since she sustained a spinal cord injury (SCI) playing for Reading Rams in October 2017.
As Dani explains, “My rugby club has been fantastic in how they have supported me since my injury, even going as far as to build a platform so I can continue to watch matches free from obstruction.
“No one ever wants injuries like this to happen, but as mine happened on a rugby pitch the Injured Players Foundation has also been with me since day one.
“When you’re lying in hospital, vulnerable, and thinking the whole world is closing in on you, the IPF was there for me. I met so many people in my spinal unit who had no support at all.
“The IPF gave me a future and helped me to live an independent life, providing funding for house adaptations and equipment. They opened my eyes to a life that still existed when I thought it didn’t.
However, like many people who sustain SCIs, Dani’s journey has still been far from smooth.
She draws on all her reserves of strength to battle debilitating pain on a daily basis. Perhaps even more overwhelming has been the emotional pain she endured at losing a child after she was advised to terminate a very much wanted pregnancy due to a complication connected to pelvic congestion syndrome, a recommendation which later turned out to be unfounded.
It is a situation Dani never wants anyone else to experience and it has been a driving force behind her determination to ensure people living with SCIs have access to medical experts with the required knowledge of SCIs to receive the best advice for each individual.
“The termination is a decision I will never come to terms with or ever get over,” explains Dani. “I was sobbing as I was put to sleep, and I was sobbing when I woke up. You just go with advice doctors give you as you assume they know best.
“However, later an expert urologist told me there was actually a relatively simple fix to the issue I was experiencing, so a termination wasn’t the only option. I’d never blame anyone as they were simply giving me advice according to their knowledge.
“The problem was, they hadn’t sufficient knowledge about patients with SCIs. One of the many reasons I wanted to become an ambassador for the Spinal Injuries Association was to fight for equality in care, to ensure people with SCIs are treated by medics with the necessary expertise.
"I’ve had to battle a system that's not delivering the same healthcare I could access before I was a disabled woman. I believe that comes from a lack of knowledge.
"In the past, I've also been denied MRI scans because of accessibility issues. Before I was in my wheelchair I found no barriers, why should I face barriers now?”
The word resilient does not feel adequate when trying to describe how Dani, like many IPF members, has navigated life since her injury and traumatic life-changing events.
She has refused to let injury prevent her from living the life she wants to lead, often inspiring others as she goes.
She has sailed around the Caribbean using an adapted wheelchair to improve the boat’s accessibility, completed the London Marathon to raise funds for the Injured Players Foundation and represented GB at para ice hockey, most recently at the first women’s para world championships in Slovakia where they came fourth.
The latter, we might add, was achieved alongside being mum to three children under the age of 10 – Lillie-Rose, Freddie and Isla Rose. One marvels at Dani’s time management and plate-spinning abilities!
It is perhaps Dani’s role as an ambassador for the Spinal Injuries Association which motivates her most. In November she celebrated a momentous moment in history when she headed to Downing Street with the SIA.
Dani accompanied the Chair and Vice Chair of the All Party Parliamentary Group (APPG) for Spinal Cord Injury, Andy McDonald, MP, and John Glen, MP, SIA leaders and fellow ambassador Zoe Fox to deliver SIA’s first ever petition calling on the Prime Minister to adopt the recommendations of the APPG for Spinal Cord Injury’s inquiry report, Fragmented to Coordinated: Building a National Strategy for Spinal Cord Injury.
Speaking about this defining moment at Downing Street, the culmination of months of work from so many people connected to the Spinal Injuries Association and beyond, Dani said:
“I'm very proud of the whole community that has been involved in this movement.
“It was overwhelming to see such an important report being handed in. So many people have committed so much of their lives to achieving this moment, particularly Dr Dharshana Sridhar, who has been the driving force behind this campaign. She is honestly like a superhero in this movement. Also, everyone with SCI who shared their own experience as part of the report, without them, nothing can change.
“You never think you're going to be on the steps of Downing Street. You only ever see it on the news, so it was a very surreal moment like being on a film set. You knock on the door, then a person opens it and takes your sealed letter straight to the Prime Minister’s office to put it on their desk.”
The petition is supported by almost two hundred signatories representing the voices of consultants, clinicians and healthcare professionals from NHS Trusts, Specialised Spinal Cord Injury Centres, the Royal College of Nursing, people with lived experience, charities and Parliamentarians.
The aim is to reflect the growing national call for a coordinated, person-centred spinal cord injury strategy, with the APGP stating they will continue working with Government and the NHS to ensure every person with a spinal cord injury receives the specialist care and support they deserve. The full letter to the Prime Minister is available to read
Dani explains: “Every two hours in the UK, someone's life changes forever due to a spinal cord injury. It could be through a car accident or everyday situations. It happens to all ages, in all walks of life. 65% of those people understandably go on to report serious mental health struggles."
“To not already have a national strategy in place to support people in this situation is unbelievable really".
“In simple terms, the national strategy we are campaigning for is about connecting the dots to protect people, not just with spinal cord injuries but everyone who has a neurological condition.
“Part of that is ensuring people receive the right medical care in the right places by experts trained to deal with these conditions.
“We’re trying to link with a number of charities who support people with Parkinson's or MS or stroke for example.
“So, this is not just about improving outcomes for spinal cord injured patients, it's about setting a precedent for how the UK treats long-term neurological and complex conditions such as brain injury or MND, as we all suffer from the fragmentation of the system."
“Handing this petition in to Downing Street was a huge step forward, powered by our community. We are definitely moving in the right direction. Our thanks go to every supporter who helped us reach this moment.”
