Guard of honour for heroic firefighter who died after motor neurone disease battle
PUBLISHED: 16:19 18 August 2020 | UPDATED: 09:22 19 August 2020
Tributes have been paid to a highly regarded Suffolk firefighter who helped to pave over cracks in the healthcare system for families affected by motor neurone disease (MND).
Steve Gardiner, from Stoke Park, Ipswich, died at home on July 22 at the age of 61, with his family by his side.
A former lance corporal with the Royal Marines, Mr Gardiner will be remembered as a courageous and straight-talking person with a unique sense of humour and a schoolboy-style rebellious streak.
His death marks a huge loss for the county to which he made a significant contribution both for his role as a leading firefighter and for what he did to improve the care pathway for patients with MND.
Mr Gardiner was diagnosed with MND in September 2016, two years after symptoms of muscle twitching and weakness started to appear, and after a 14-month process of tests.
By this point Mr Gardiner had already stopped working and was struggling to get up and down the stairs.
Despite the life-changing nature of the condition, Mr Gardiner and his wife Beverley felt like they were left to navigate the early stages of the journey alone.
The absence of any formal system to flag up new MND patients to other relevant services meant the couple were left reeling from the diagnosis with nowhere to turn for support or guidance.
It was only when Mr Gardiner made contact with a friend who worked at St Elizabeth Hospice in Ipswich that the help they needed both practically and emotionally started to be put in place.
As it turned out, Mr Gardiner’s experience was not isolated, and a campaign was already underway at the local branch of the MND Association to stop patients being lost in the disjointed system.
For six years, Liz Cooper, then the charity’s regional care development adviser, had been fighting for funding for a new MND coordinator post for east Suffolk.
Eager to prevent others going through the same thing they had, Mr Gardiner and his wife agreed to throw their weight behind Ms Cooper’s campaign.
In July 2017, the couple bravely told their story to executives at the Ipswich and East Suffolk NHS Clinical Commissioning Group (CCG) and it was at this meeting that it agreed to fund the post.
Registered nurse Kate Barber came into role the following year and went on to become an invaluable advocate for Mr Gardiner.
It is her role to act as a central contact point for families between the 20 different health and social care professionals MND patients are likely to need support from throughout the disease trajectory.
Crucially, her involvement with families starts at the diagnostic appointment, where possible, and failing that within two weeks of diagnosis.
Ms Cooper said Mr Gardiner would be remembered for his contribution in helping to “improve the experiences of people living with MND in Suffolk, especially following diagnosis”.
With Mrs Barber in place, people with MND were no longer being allowed to “slip through the net”, she added.
The coordinator post is managed and based at St Elizabeth Hospice in partnership with the MND Association and the CCG.
Linda Laisure, quality patient experience and clinical lead at the hospice, said people with MND were now being referred to vital services such as dieticians and speech and language therapists sooner.
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The introduction of the post meant patients were also being linked to the hospice at a much earlier stage for palliative care to help improve their quality of care as well as preparing for the end of life.
“This earlier involvement has helped reduce the number of patients and families we are seeing in crisis situations having had little or no support coordinated prior to coming to the hospice,” said Mrs Laisure.
Mrs Barber’s appointment has been so successful that Ipswich and East Suffolk CCG has agreed to provide recurrent funding for the post.
Mrs Barber said: “MND is a disease that relentlessly robs the person of many things. My role is to ensure that it does not take away the essence of who they are and to enable and advocate for them.
“Steve’s legacy is that those affected by MND in east Suffolk will have a voice.”
The CCG’s chief nurse, Lisa Nobes, said Mr Gardiner spoke with “great passion” in 2017 and it was his account that helped motivate the CCG to invest in the new role.
She said families with MND were now getting “the support they deserve”.
“The news of Steve’s death is deeply saddening, yet his family should remain proud of the lasting legacy he leaves for people in Suffolk living with motor neurone disease,” she added.
MND causes the cells in the brain and nerves - called motor neurones - to gradually stop working, preventing messages from reaching the muscles. There is no effective treatment and no cure.
About 35 to 40 families are believed to be affected by MND in east Suffolk.
Mrs Gardiner, who gave up work to take on the role of her husband’s fulltime carer, described MND as a “terrible and heartbreaking disease”.
She paid thanks to St Elizabeth Hospice, the MND Association, the NHS community nursing team and Fuchsia Homecare for their “incredible” support.
She gave a particular mention to Mrs Barber who “took Steve and his stubborn ways in her stride and became a good friend”.
Before Mr Gardiner’s diagnosis, the couple had not heard of MND and it is Mrs Gardiner’s hope that more will be done to shine a spotlight on the condition going forward.
A celebration of Mr Gardiner’s life was held in Ipswich on Tuesday.
His colleagues from Princes Street Fire Station paid their last respects by performing a guard of honour outside the station as the funeral procession went past.
Mr Gardiner, who leaves behind two sons, five grandchildren and two stepchildren, joined Suffolk Fire and Rescue Service in 1991.
He worked until his retirement due to ill health as an on-call firefighter and crew commander at Princes Street and a part-time fire and security officer at PPG paint factory in Stowmarket.
Ipswich firefighters Aeneas Postlethwaite and Paul Quinton described their friend “Stevie G”, as he was affectionally known by colleagues, as an “integral part of our firefighting family”.
In a joint statement, they said: “He has been instrumental in shaping the careers of so many firefighters, not least our own, by instilling professionalism, dedication, practical firefighting ability and a great sense of humour. He proudly helped all those in need.
“These qualities remain within the crew at Princes Street today and will be part of Steve’s legacy in the fire and rescue service.”
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