Charlie’s story

“I have noticed a change in myself since coming to St Clare – the difference the care has made has been unbelievable. Finding St Clare and being able to access this support means a lot, and I look forward to coming along to Day Therapy.”

15 years ago, I was diagnosed with Chronic Obstructive Pulmonary Disease (COPD). It has been a long journey for me since then, but finding St Clare has helped me to reclaim my independence.”

“My disease began to get worse as time went on. I think when you’re told there is ‘nothing they can do for you’ anymore – no cure for your illness – your brain goes numb in that initial moment.”

“But, I’ve never been scared of anything, ever. I’m not scared of dying either, so after that initial period of shock, I came to terms with what was going to happen to me almost straight away. I knew that there was nothing I could do about it; I couldn’t stop it. I just wanted to carry on as best as I could.”

“I’ve experienced a lot since my initial diagnosis. For about ten years, I was housebound – I couldn’t get out at all. I suffered severe depression not being able to do the things I wanted to do. I’ve had to have major surgery many times, and in some cases I wasn’t able to have surgery because of my COPD.”

“However, I’ve had very good treatment for my COPD. One day, my consultant I was seeing asked me if I would be interested in going to a hospice.”

“When I first heard the word ‘hospice,’ I was shocked. I thought it meant I didn’t have long left – but I didn’t think it would be that quick! At the time, I didn’t realise that hospices actually offer support to people right from the point of diagnosis.”

“I agreed with my consultant to give it a go, and then I got a call from St Clare. I met with one of the nurses and signed up to attend their Breathlessness Group which is part of the Day Therapy service. It was every Monday morning, for six weeks.”

“The moment I walked through the doors of St Clare, I was made to feel welcome. Everyone is friendly and says ‘Hello’, and everyone goes that extra mile for you.”

“One of the symptoms of COPD is breathlessness, and feeling short of breath.”

“I knew quite a bit about how to manage my breathlessness, but at St Clare I learned about things I didn’t know, like breathing exercises which really helped me. Now, I use the techniques I have learned at home as well.”

“When the six weeks were over, I spoke to Emily, the Day Therapy Manager at St Clare, and asked if there was anything else I could come to at St Clare. She mentioned a ‘men’s’ Day Therapy group that meets on a Wednesday, and we agreed that I’d give it a try for a further twelve weeks.”

“Day Therapy at St Clare is absolutely brilliant because you’re talking to people who know exactly how you feel and what you’re going through.”

“It’s that group support that helps so much. To be quite honest, most blokes aren’t very sociable, and we don’t like to talk about how we are ill and all that. But, it only took one of us to start talking, and then we all started! It brings everything out and allows us to express ourselves – whilst also getting me out of the house and socialising with new people.”

“We do a lot of mental exercises, and some relaxation therapy which does help you to feel more relaxed. It’s mostly the group support that makes the difference, though, and talking through things.”

“Our group facilitator, Jane, encourages us to pick out a postcard or a piece of fabric, for example, and we talk through things. She’ll ask things like, ‘why did you do that,’ or ‘what does that remind you of,’ which is really good. It’s like a guided conversation.”

“There’s a lot of stress when you know you aren’t going to get better, but everyone at Day Therapy is the same. There’s even a couple of people who have the same diagnosis as me, so we have that shared experience together.”

“Day Therapy brings a lot of joy. It’s quite funny at times! A bit of laughter can really help a lot.”

“The most important thing I have found at St Clare is the staff. They are fabulous. Jenny, the nurse, helps me with my pain medication, and sits there and listens to me so she can support me. She asks the right questions and she’s interested in how I am feeling.”

“When we have lunch at the hospice – and the food is amazing! – the staff even come and bring us our lunches as we sit at the dining table all together. They take our plates away, bring us afters, and then make us tea. It’s absolutely fabulous!”

“Even the office staff and the receptionists are so friendly. Every time I come in or leave the hospice, everybody at Reception says goodbye – even when they don’t actually know me!”

“I have noticed a change in myself since coming to St Clare – the difference the care has made has been unbelievable. Finding St Clare and being able to access this support means a lot, and I look forward to coming along to Day Therapy.”

“I might wake up and be in a real bad mood, but once I come to St Clare I’m in a good mood within about ten minutes! And I go home in a good mood. The emotional therapy can almost take away the pain you’re feeling.”

“Coming to St Clare gets me out the house, and has allowed me to take back my independence.”

“When I was housebound, I got into a bit of art and painting. I was flicking through the TV one morning and I saw this programme about painting and I thought – I could do that.”

“I’ve always been good at drawing, so I asked my Missus if she would be able to get some of the paints for me. She went down the road and came back with watercolours for me. I used to watch the painting programmes every day. My wife took me out in the car to take some photos of landscapes and things like that, and I started painting them, eventually moving on to painting from my own imagination. 10 years later, I am still painting!”

“There was so much that I wanted to thank St Clare for, so I decided to donate one of my paintings to the Hospice.”

“I have done many exhibitions, including at the Civic Centre in Harlow, and I have sold quite a few of my paintings. But I wanted to give one as a gift to St Clare to give something back.”

“Everything St Clare has done for me hasn’t cost me a penny, and I couldn’t receive better treatment than at the Hospice. I just wanted to give something back, and they now display my painting in the Day Therapy area which is great.”

“Coming to St Clare hasn’t been what I expected. Hospices are nothing like what they used to be. There’s no reason to be afraid. To anyone who is thinking about accessing St Clare’s care, I’d say ‘Just go and have a look – it’s a different world now!’ If you don’t like it, you don’t have to go – but if you do then you will get the best care there.”

“I remember when I first came to the Breathlessness Group, one of the nurses took me to go and see the Inpatient Unit because I had never been down there. Blimey – talk about first class! I want to go there when I need care at the end of my life – the rooms are brilliant.”

“There’s no reason to be afraid of hospices. And I don’t know why people are afraid of the word ‘death’, because we are all going to die eventually. Some of us get illnesses, and some of us don’t, but we are all going to die one day.”

“At the end of the day, St Clare has been a life-saver for me. This place has done me a world of good, and I’d recommend their services to anyone.”

– Charlie

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