How co-ordinated care got Tony to the church on time

Tony Whittle was diagnosed with multiple-system atrophy (MSA), a rare neurological disorder similar to Parkinson’s disease, in March 2013. It looked like Tony’s illness might prevent him from attending his son Joe’s wedding, as he needed an operation three days before the big day – but hospice and hospital staff made sure he made it to the church. 

Tony’s illness affected him gradually at first, but over the past 12 months he has needed more and more care. His wife Claire says: “MSA affects the body much like motor neurone disease. It becomes increasingly difficult to walk and move around, to self-care, to speak and to swallow.”

As Tony’s symptoms deteriorated, his GP referred him to Marie Curie, and a clinical nurse specialist from the Marie Curie Hospice, West Midlands came to see how they were doing. “That was the first big thing, the community hospice nurse coming in to us”, says Claire. “She helped source lots of things we needed and co-ordinated the other people who cared for Tony such as the physio and the occupational therapist. That was really, really helpful.”

Tony soon started going to the hospice as a day patient, something he really enjoys. Claire says: “It is very sociable – very jolly and very upbeat. There are some real characters there. They’ll go into the garden, have some lunch, do quizzes and have various visits. There was even a guy who came who brought his dog for pet therapy... it was brilliant.”

 “On that Saturday, the focus was all on Tony”

In May, Tony’s eldest son, Joe, got married. Tony was able to attend the wedding – despite undergoing surgery three days before – thanks to co-ordination between the hospice and the hospital and the dedication of hospice staff.  

Claire says: “Tony was really struggling with food. A dietitian visited the hospice and suggested fitting a peg, a kind of feeding tube that would make it easier for us to give him his food and medication. There was lots of co-ordination between the hospice and the hospital staff – consultant to consultant – to get the preparation and timing right. The operation eventually took place just three days before Joe’s wedding!

“We were cutting it fine but there was a big push from the hospice staff to get the operation done and get Tony to the wedding. On that Saturday, the focus at the hospice was all on Tony. One of the nurses used to be a hair dresser and cut his hair. They gave him a full shower and a shave and dressed him in his wedding outfit. They helped me get him into the car so we could get him to the hotel.

“All the medicines were there, all the feeding kit and a pump. The whole of the co-ordination of the care was to get us out and to the wedding. It was just unbelievable – doctors, pharmacists, nurses, support staff. It was brilliant.

“The wedding was really, really nice. All of Tony’s siblings were there and we have some great photos of the five of them. Joe was so appreciative and grateful that his dad was there, it was quite emotional."

Read more about Marie Curie Hospices and how we help people achieve the best possible quality of life.