Ex-hospice CEO looking to set up Different Stokes support group at Corn Hall in Diss
After suffering a stroke four years ago, the former CEO of a children’s hospice is on a mission to provide desperately needed support for people in his situation.
Peter Ellis, 62, is putting together monthly meet-ups at the Corn Hall for stroke victims after learning of the dearth of support groups for people in south Norfolk.
In March 2018, Mr Ellis was enjoying his retirement at his home in Mount Street, Diss, after spending four decades as the CEO of Richard House and as operations manager on the cancer ward of a busy London hospital.
“I was doing some gardening when suddenly this horrible feeling came over me,” he said.
“I thought it would pass in a couple of minutes and it didn’t – then my left arm went dead and I realised I was having a stroke.
“It was the most scary experience I think I have ever had in my life.”
He spent a month at Norfolk and Norwich University Hospital, followed by a further five months at a rehab unit in Norwich, before he was finally discharged in August that year.
Throughout his recovery, he began having epileptic fits, while several falls led to him breaking his hip, pelvis and shoulder. He now uses a motorised wheelchair and is cared for by his husband, Duncan Dalais, 66.
“These are often the consequences of a stroke that people don’t appreciate,” he said.
“I can’t do any gardening, cycling, driving or playing the piano. All the things you expect to do in early retirement, you just can’t do any more.
“Coming to terms with it is a big thing – at first, you can’t accept it, and it’s something I’m still coming to terms with.”
What struck Mr Ellis was the lack of support for stroke patients once they are discharged from hospital.
“Once you are discharged, you are mostly left to get on with it alone,” he said.
“For people affected by cancer, there’s a lot available to them both in and after hospital care. Cancer care and services receive a lot of attention, and quite rightly.
“But stroke has a poor profile and poor care provision, certainly following acute hospital care.”
While undergoing his recovery at a specialist gym in Norwich, Mr Ellis was approached by Sandra Ross, another stroke survivor, who works as a regional co-ordinator for charity Different Strokes.
“I met Peter at the gym, and I knew he lived in Diss, so I asked him to come for a coffee. I asked him how he felt about setting up a group, to support people with strokes,” said Mrs Ross.
“There is nothing at all for people in south Norfolk and north Suffolk, so we wanted to get something set up.”
Mr Ellis added: “I know when I look around the community that there’s lots of people that have had strokes, so it surprises me that there isn’t a group to support them.
“This group is aiming to offer everything, from physios and medical support to tea and coffee. It will be led by itself – we’re open to any ideas, but I need people to help work with me.”
Anybody in the south Norfolk area who has suffered from a stroke and would like to be involved in the group should send an email to firstname.lastname@example.org.