Hillsborough Man Talks About His Palliative Care For MND

John Finlay from Hillsborough talks about his paliative care from the South Estern HSC Trust

“All of a sudden you felt that arms had reached out to you, to hold you, and to stop you from falling any further.”

Those were the words of John Finlay who suffers from Motor Neurone Disease as he and his wife Karin praised the palliative care team as “unsung heroes.”

73-year-old John Finlay from Hillsborough received the devastating diagnosis that he had Motor Neurone Disease (MND) on October 2023.

Alongside his family and ever supportive wife Karin, John described the period after learning he had MND a “very trying. It was a difficult time and emotions were high.”

`The theme for this year’s Palliative Care Week is: ‘You, Me and Palliative Care’.  The theme was chosen to try and remind people about the different ways that palliative care can touch any of our lives and how it can benefit us if and when we may need it.

Following diagnosis, the Hillsborough couple were then referred to the Trust’s Palliative Care team as John recalled how he initially thought. He said: “When you hear the term Palliative Care you immediately think that time is running out and it is a bit frightening from that point-of-view.”

John and Karin’s uncertainty in terms of his care were soon put to rest with the expert assistance and guidance of Advanced Practice Palliative Care Dietitian Tracy Haylett and the Team.

John described just how important the Palliative Care team have become within the Finlay family. “The team come in and they are cheerful, they are bright and they make you feel good. I have been known to say I have another three, four daughters now because they look after me so well.”

“Tracy is brilliant. She will come in and scold me if I’m not doing the right thing,” laughed John. “I find it quite emotional talking about what the team do. I cannot emphasise how important they are. If we need them they are only a phone call away, what more can you ask?

“The team means everything.” 

Karin added poignantly how the couple, who recently marked their Golden Wedding anniversary with a ‘summer celebration of life’, “Had been on a spiral downwards for a year trying to get a diagnosis for John.”

“I’m not sure who initially referred us to the Palliative Care team but whoever it was I am eternally grateful.”

Karin said: “John had gone from a big, burly, DIY husband to somebody who was bent over at 90 degrees and had lost about three stone in weight within a year.

“When it came to the diagnosis you do realise that this is terminal. We both said, ‘life is terminal, we will just make the most of the time we have’.”

Karin added: “It wasn’t more than a few weeks after when the door-bell rang and in came the first of the Palliative Care team and that was Amy Blair the Physiotherapist.  All of sudden you felt that arms had reached out to you, to hold you, and to stop you from falling any further.

“Tracy was next at the door and was so gentle. Tracy asked could she come in and talk to John and offered so much assurance, advice and guidance.”

Karin added how Palliative Care Speech and Language Therapist Sophie Whitehead has also been instrumental to John’s care as she has provided support and advice as John’s swallow has deteriorated and has also been involved in banking John’s voice.

Specialist Palliative Care Occupational Therapist Bridin O’Hare has also been providing assistance to the Finlay’s with providing equipment such as a wheelchair for John, shower stool as well as providing emotional support.

Karin said: “Tracy is in an even more important role for us as the hospital had tried to put a feeding tube into John’s stomach and unfortunately that is not possible now. I work more closely with Tracy as she has been showing me how to adapt John’s diet, how to cut up his food to make it easier to swallow but as time goes on that will change.”

Karin described the Palliative Care Team, saying: “They don’t come in and talk about the gloomy side, they talk about the positive and I thank God for them.

“I just know that these arms are there to cushion us and support us and give us peace of mind. I want to thank them from the bottom of my heart.”

Advanced Practice Palliative Care Dietitian Tracy Haylett explained her role saying, “It is to support people who have eating difficulties and to very sensitively, just really encourage them to eat and drink as well as they can.

“I have been with John and Karin for almost a year now and when I call to the house, we’ll have a chat, have a cup of tea, it’s not me just buzzing in.

“The team builds rapport with their patients. We build a relationship because unless you have that you are not going to be able to encourage people to make the changes that they need to.”

Tracy described how she chose a career path in Palliative Care. She said: “My personality is very much suited to it. When I worked in a hospital I was always perched on the bed with the patients.

“I was always a chatty person. This role very much suits me and I’m very passionate about what I do. It’s the best job I’ve ever had.”

“It is a privilege to come into people’s lives, into their homes and I wouldn’t work anywhere else. The Palliative Care service is essential and we give 100 per cent.”