When Ron was diagnosed with Idiopathic Pulmonary Fibrosis in 2014, he was given three to five years to live. During this emotional time, Ron and Maxine reached out to St Barnabas and received support before his lung transplant and afterwards.
Ron says: “It was a very depressing time for us. I can just remember crying all night. We were planning a future together, and we felt robbed.
“I reached out to St Barnabas and completed a self-referral through the website. I made a phone call, and they saw me within a couple of days, and within a couple of days after that, they accepted me.
“Since then, I’ve accessed most of the services at St Barnabas. I’ve done Tai Chi; I’ve had sleeping classes because I had a lot of sleeping problems at the time. We’ve gone through relaxation and wellbeing together, and at the moment, I’m doing singing lessons.”
Karen McCay, Senior Clinical Services Manager, says: “At St Barnabas, we are committed to providing personalised care and support through a whole system approach. Rather than asking what’s the matter with you, we ask what matters to you. We then offer the care and support that is right for each individual person.
“We see you as a whole person, rather than a list of symptoms and problems.”
Ron continues: “When you see the same person time and time again, she gets to know you. Not like when you sometimes go to a doctor’s and they don’t really know you. My nurse can spot if I’m going down, if I’m low, if I’m well. She has actually noticed my low mood before and then contacted the doctor on my behalf, saying I think this patient needs to go on to anti-depressants.
She gets to know you as a person, which I think is a great benefit on your journey.”
Maxine adds: “I think it was important that if we didn’t want to do something, if it wasn’t quite what we wanted or we couldn’t see it at the time, she would leave it and then come back to it later. So, she very much respected how we were feeling at the time.”
After receiving vital support from St Barnabas, Ron was discharged, but after receiving a lung transplant, Ron reached out again to the Hospice.
Ron says: “I was suffering low mood and guilt. I went into a slight depression. I contacted the Hospice again and they offered me further support after transplant.”
Maxine says: “We were probably both at our lowest. I thought, as Ron had had his transplant, the Hospice won’t be able to help again – and that wasn’t the case. Sue, our nurse, came in and asked us ‘where’s your support, tell me what you’ve been through’, and we were both offered counselling.
“What the Hospice have done, is seen us a couple and they’ve focussed on me as well. They allowed him space, and they also allowed me, my space, to offload how I was feeling. As a carer, we believe that we have to remain strong, but it was okay for me to not be okay and to be upset that my life wasn’t what it was going to be.
“They were the only ones that offered that support to me. I can’t thank the people that have been involved for me enough because I don’t know where we would be as a couple and whether we would be in the good place that we are now.”
The St Barnabas team also supported Ron and Maxine with the ReSPECT form, a document that outlines a patient’s preferences for care and treatment in the event of an emergency when they are unable to communicate their wishes.
Maxine says: “It’s a form that is incredibly hard to do, for anybody, but it made us focus on what Ron really wanted. We found that quite comforting that we’d had the chance to talk about that with the nurse, who was very understanding about how to do it. That helped us enormously.”
Ron says: “The service they’ve given me over the years has been absolutely fantastic. I’ve had so much support. I’d like to thank the whole team from the bottom of my heart for being there. Not just for me, for both of us.”
Maxine adds: “Without them, we wouldn’t be here. Without St Barnabas, we wouldn’t have got through it. I know if, and when, anything happens to Ron, that St Barnabas will be there to support me, and that is invaluable.”
St Barnabas Hospice is a local, independent charity, providing free support to over 12,000 people like Ron and Maxine, each year, in Lincolnshire.
If you would like to make a donation, fundraise for the charity, or find out more about the services it provides, please visit: https://stbarnabashospice.co.uk/