Diagnosed with Motor Neurone Disease (MND) in 2019, outdoor-lover Ian Flatt explains the difference support from Saint Michael’s Motor Neurone Disease Clinical Nurse Specialist has made to his life and how it has helped his family.
“We’re a fabulous family – very close, open and honest. I’ve always been a very active person and have loved teaching the girls to kayak, surf and fully enjoy the outdoor life, especially during their younger years whilst we lived in Devon. I’ve also enjoyed many outdoor activities; scuba diving, white water rafting, bungee jumping and learning to pilot a glider and light aircraft. We’ve always had that outdoor life with our girls with lots of socializing and time spent abroad.
“In 2018, things started to change. The year before, my hands started cramping and by April 2018 my energy levels started to go. I had very little stamina, and I was losing weight. I struggled to work for months. Get up, get a shower, go back to sleep…every day for months. But I didn’t tell anyone straight away. We told our daughters, Isea and Charley “Daddy’s a bit tired”. I was constantly tired and constantly in bed. There were lots of tests – cancer tests, lung tests and heart monitoring – this went on for almost a year.”
“I was ultimately diagnosed with MND in March 2019 and to be honest it was a relief – now I knew what I had to deal with. No more guesswork.
“What we learned was that the fatigue in particular was a build up of carbon dioxide as my respiratory system was failing and I didn’t have the strength to expel the carbon dioxide.
“When we got the diagnosis I wanted to know exactly what would be happening to me and what my prognosis was. I felt now that the mystery had been solved I needed to be in control and to be in charge of my family’s future. Initially it was difficult to obtain the straightforward and honest answers I needed, due in part perhaps to the nature of the disease and the individual progression this can take. I was told the average for my condition with the complication of respiratory compromise could be 12–18 months, whilst on the other hand I was told the average could be 3-5 years. This was incredibly frustrating as my initial way of dealing with the news was by seeking certainty and absolutes, which of course on reflection was slightly optimistic.
“I immediately started sorting the practical things out, like finances, Power of Attorney and finding support for my wife Rachael. Of course, we were both thinking: “How are we going to tell the girls?”
“When we told the girls, obviously it was a shock. Isea was and is, very engaged in the process on the surface wanting to support me and her Mum whilst struggling with and hiding her own feelings from us ‘as she didn’t want to be a burden’. Charley found it incredibly difficult to acknowledge that I was ill and her coping mechanism was not to talk about it.
“I met the physio from the Leeds MND Team and part of the conversation was ‘the more you use your muscles, the quicker you lose them’, I said I’d rather use them and enjoy my time than sit around for the sake of an additional few months. I set myself a target of walking a mile a day. These are my choices. The big thing for us both was setting goals and challenges and things to look forward to.
“We were asked if I had been referred to Kate Adams (Saint Michael’s MND Clinical Nurse Specialist) by one of our local physios. I remember the consultant mentioned hospice care, which in my head meant palliative care, I said I didn’t need any of that as I’m dying at home in my own bed!
“However, after a short while I did want to speak to Kate, and that was the beginning of our journey with Saint Michael’s Hospice. When we met Kate she acted as a conduit between us and the Leeds MND team. She’s a doer, a solution provider, helping us with challenges that we had no experience of or indeed knowledge of how to resolve. Within a couple of sessions she felt like a family friend.
“Kate brought the hospice pre-bereavement support worker Frances Coad in for a couple of sessions, who was fabulous.
“I have always told my girls ‘Fight the battles you can win.’ I believe you need to put your energy into the things that are productive. All we need to do now is enjoy whatever we can do in the time we have. The rest is inevitable and we can’t do anything about that.”
“Frances put in a referral to Just ‘B’ for Isea for pre-bereavement support. I can’t tell you how incredibly beneficial that has been for Isea and for us. She was given lots of support and tools to help her which has been crucial. She would talk about things much more openly with me about MND but initially didn’t talk to me about how she was feeling, as her instinct was not to offload to us so as not to upset us. Just ‘B’ once again really helped with that by reassuring Isea on how important her feelings and well being were to all of us.
“Isea’s always been very conscious of how we all feel – we call her the United Nations. So for her to have someone outside of the family to open up to was so helpful. The support has been there for all the family and I know that it will be there when Charley needs it too.
“I’ve always been a planner and a numbers person but I had noticed early on that I had started to struggle. The psychologist with the Leeds MND team explained it in a beautiful way, ‘Think of a brain like an orchestra – you’ve got the string section, the percussion section and so on…It’s still all there but your conductor has gone on holiday’! The strategic planning part of my brain, the concentration, and memory have been affected in varying degrees.
“Kate and Vanessa’s (Saint Michael’s Physiotherapist) help means there are no barriers. They help us get over every barrier we’ve come across. There has been a succession of ideas and solutions combined with real care and thoughtfulness.
“The team just know what will make my life easier without me even saying anything. My personality means that not being able to find solutions would be so frustrating and I really admire the way they have got to understand my personality. Kate in particular instinctively knows when to push and when to leave me to be stubborn!”
“I am treated as an individual not as an illness. It’s so special, it’s like having my own personal guardian angel. I told Kate ‘You’re like Nanny McPhee – there when I need you.’
“For example, my neck muscles aren’t as strong as they used to be so I wear a collar. Back in the summer I remember saying: ‘Kate, it’s blooming warm in this collar.’ 24 hours later there’s a knock on the door with a new collar with a frame which lets the air through. Small things, but so important!”
"Their help means there are no barriers. They help us get over every barrier we’ve come across. There has been a succession of ideas and solutions combined with real care and thoughtfulness."
“Another example was she noticed I was struggling with cutlery and she just turned up with a box of special cutlery and said: ‘I wonder if you’d like to try this.’
“Things which I thought were an inevitable part of my condition can be solved. Their care is so personalised for us as a family.
“Alongside the medical and emotional support Kate is extremely experienced and knowledgeable in sourcing equipment and where applicable, funding. She organized my stair lift with the MND Association, which included the funding for the installation and part rental, she also referred us to North Yorkshire County Council and Harrogate Borough Council to secure some funding for a wet room conversion. At this point, we had no idea these funding streams even existed.
“The Hospice has a holistic approach. Vanessa came and spent time getting to know me, she developed individual exercise routines to work on different parts of my body to combat the changes or alleviate discomfort. They say: ‘What do you need, how can we help, what do you want from this?’ Then they come back with ‘This is what we think, based on what you’re telling us. How do you feel about that?'”
“When you hear hospice care you immediately assume you are at the end of the journey. But they don’t help you die – they help you live!
“It is easy and perhaps understandable for people to focus on my medical condition however, Saint Michael’s Hospice has really understood that this is not our priority. The emotional safety and stability of our family is paramount, to this end we feel that Saint Michaels Hospice and Just ‘B’ have picked us all up and wrapped their arms around us in a collective hug.”
Rachael said: “Kate helps with emotional support, practical support, personalised for Ian and us as a family. It feels like the support is tailored around the individuals. Just ‘B’ have helped Isea prepare for whatever the next stage might be. She is in such a better place, she is able to laugh and talk about the situation so much more openly – Just ‘B’ have helped her to do this.
“Charley has only recently been able to talk to me about things that are going on with Ian. But Kate and the team haven’t pushed any support on her, they have allowed her to come to them when she is ready.”
Ian added: “Rachael and I went to Paris in 2019, for our anniversary, we had such a great time. When we came back and caught up with Kate, we discussed that I was a little bit weaker on my legs. Kate said ‘why don’t we get you a wheelchair?’, I was horrified.
“But then I had a think. Kate put in the referral and helped us navigate the process. She even came with us to choose the chair and of course, I don’t know what I need from a chair. All of a sudden Kate’s there asking about neck support, and head rests, all I asked was ‘How fast does it go?’.
“I live in Green Hammerton, a rural area and most chairs are OK on tarmac, but you can’t take it on grass, can’t take it on gravel…so what’s the point?
“Kate and the occupational therapist got together and did research with other people with MND to talk about their wheelchairs. Eventually we found ‘the one!’ A proper off-road wheelchair which we call the Tangerine Dream Machine. It’s just a brilliant piece of kit.
“Being restricted and confined because I couldn’t go out to the places I love would have made our journey far more unpleasant. So to have that chair means we can go where we want to. Things like that add so much to life. I find it relatively easy to adjust to the things this illness brings, it’s just a progression. What would make it incredibly difficult for me is not having the solutions.”
"I am treated as an individual, not as an illness...The emotional safety and stability of our family is paramount, to this end we feel that Saint Michaels Hospice and Just ‘B’ have picked us all up and wrapped their arms around us in a collective hug."
“Before lockdown, Kate floated the idea of attending an MND support group at the Hospice, it didn’t sound or feel like it was something I would enjoy. But I really enjoyed it, meeting different people. It really unlocked something in me. We are so fortunate in our circumstances. For months everything had been focused on me and suddenly, meeting all these other people with MND and their partners/loved ones, I felt like I wanted to support others.
“It inspired me to set myself a challenge. I want to raise funds for Saint Michael’s Hospice and the MND Association. So as a family we planned a little walk, I want to do a 100 mile trek following some of our favourite routes across the Dales, maybe covering 5-8 miles a day. I’ve always loved a challenge and I need to test myself, I want to do this for myself and for all the people who have supported and helped us. And Kate will be there too by our side.
“I’ve wanted to do this as soon as I can because there will be a point when I can’t. As much as I hope Kate and the team know that we appreciate them, I want to do something which shows it.”