"Pulmonary Rehab group met at Springs Leisure Centre"

**On 3rd March 2015, the Pulmonary Rehab group met at Springs Leisure Centre and invited us to hear about their experiences about health services locally. Members live with a variety of respiratory conditions. The quotes below are in their words. We would like to take this opportunity to thank them for their time, frankness and help with developing the Sheffield Respiratory Strategy. **

"The steroids are good- the 5 day ones. When it’s really bad I go to the doctor or practice nurse and they ask if I want to go on them. They do me good for that time.

I’m unconfident with managing my own health. At home I’m unconfident with managing my own health. I’d like an actual diagnosis about how long I’ve got left to live- I’d like to know. I’m uncertain about managing my own health. I go to see the consultant every 6 months it doesn’t help when I say I’ve been in hospital, there’s no record. When I see a junior doctor it’s like explaining again what’s wrong. It’s like explaining 9, 000 times. I’ve had no problems with my GP- the service itself is fine. It’s the organisation that’s at fault. I know we get access to our own notes at the GP; I’d like to access my own notes. They say I’ve got chronic COPD- but what does that mean? I mean in terms of lifestyle and longevity; no one’s actually explained this to me. I have become really unconfident in managing my own health. The waiting time in hospital- 2 to 3 hours- it’s not on. "

"The very first thing you need is antibiotics or steroids. After that, if they’re not working, you need reasonably quick access to hospital I would say. My experience of the Northern General hospital is that it’s absolute chaos. It seems to be so busy and there is simply not a lot of staff to be able to cope. The position I’ve been in before, in some ways it’s very difficult. You know what’s happening to you but you can’t simply phone the hospital; you have to phone to ambulance and that takes you to A&E, where you can be waiting 3 to 4 hours feeling like death warmed up. They send you onto a ward and you know after a couple of days where you’re going to end up. You can be hanging around in the hospital for a day and half. Once I picked up an infection and I can’t get rid of it, it pops back up every so often. You’re supposed to be getting better in hospital; you’re just getting worse and worse. I was in hospital 4 times last year and that wasn’t pleasant. I would imagine any one of these people can tell you, when you’re fighting for breath it’s frightening. A fan helps. The ward has lots of men and women- there’s lots of people and one fan. You get people screaming for help- does this sound good for today’s hospital standard? "

"I am quite happy with the treatment I get at my surgery. The Practice Nurse told me about the exercises. The exercises here have been a great help. "

"I feel like a bit of a phony, actually. I do get short of breath but it doesn’t stop me from doing anything. The surgery is excellent. I went for a check-up- that’s where it all started. I was in and out on quarter of an hour, and there were about 50 people. "

"I’m fairly lucky. I do get out of breath, but I’ve had no trouble dealing with hospitals. I get really out of breath in summer when it’s really hot. I use steroids when I’m coughing phlegm up. I go to the doctors and tell them I’ve got COPD and coughing up phlegm- I might have to wait a bit but they do see you. They are good in that respect. Because of my condition I do get in easier. I’ve been very fortunate. "

"I’m like these two gentlemen, I’ve been lucky, I always get seen. Last month I was in bed- I phoned the doctors and a specialist nurse was sent to see me just like that. I had my upper lung removed because of lung cancer. My surgery- if I had been the Queen I couldn’t have been treated any better. I’ve been very fortunate with my GP practice. At the moment I’m on new tablets to stop the scarring on my lungs. I get examined with third year students to help them with their exams. I think I’m just lucky- but not lucky to have this. "

"I feel the opposite. I kept seeing the doctor with pain in my legs- I’ve been to hospital- but I was checked for pain in my chest, not my legs. That’s it- done. They don’t know what they’re on about. I feel let down all the time. I had a stroke last year. The doctor told me the pain in my legs was arthritis; he turned round and said “deal with it”. All I’ve done is get waylaid. I work for myself and I kept pushing, but I can’t do it anymore. This lady got good treatment- I might have to wait 3 weeks to see my doctor. They push you away. If you go for something for a certain reason, if they pick up something else they say nothing, they miss things (at the hospital). They see them and they don’t explain. 25 years ago I had a test done for my breathing; I’ve had COPD for years. It wasn’t until 2 years ago someone said I have the chest of a 72 year old man. That’s all I can say, I’ll plod on until the day I drop. Am I just that odd case that gets missed? I had an accident at work and they said I’d gone to the wrong hospital. I drove all the way to Firth Park. I was shaking like a leaf and had lost my voice. I was sat in a cubicle gargling for 3 hours. A couple of days later I got an appointment at my doctors, I was put in a hospital bed for a week and half. "

"*Use of interpreter* He had a heart attack in the 1990’s. Since then he gets treatment. He suffers from asthma and type-2 diabetes. He’s happy with his relationship with his doctor. He will ring up and they’ll see him or send him to hospital. He has help at home. He has lots of issues but they’re under control. He was keen on doing exercise, which is why he comes here- for support. He needs support in terms of doing things he could before. He wants to be out there, he’s keen on learning new things. His other problem is asthma and chest pains, he uses a spray. Because he’s diabetic he is worse during the winter.

(In terms of whether his need for an interpreter has affected his care) His family speak good English, he’s alright from home. It is places like here, when his family are at work. There have been some delays if there’s no interpreter. If he needs to see a doctor straight away there can be an issue with interpreters- there’s language line. But there’s no delay to coming to the rehab due to interpreter. I’m booked for 4 sessions- this is his third. You can usually get hold of one within a week. "