As care in the community gets better, fewer people need to go into hospital. But it’s still so important that those who do, get good treatment and are cared for well.
When we go to the meeting of the COPD and asthma audit next week, we want to be able to share your stories of hospital care. That way, your experiences can help shape the next audit.
Please could you share a sentence about your experience of hospital care, when you’ve been admitted because of your lung condition?
If you don’t have COPD and asthma we still want to hear from you. Although we won’t be able to use your stories in next week’s meeting, it’s still helpful for our other work at the British Lung Foundation.
Thanks for your help everyone!
Bethany
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BethanyBateman
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recovery. I was admitted to a geriatric ward, with a lung condition. The other patients were elderly and confused. I wasn't able to sleep and glad to escape when i was better.
I have had very excellent care in Bassetlaw Hospital, but unfortunately I would never ever go back to Doncaster hospital, the treatment I received there was disgusting. But Any other hospital has been brilliant
My asthmatic daughter used to have open access to the children's ward at Bassetlaw Hospital thirty years ago. But it's shut to new nighttime admissions now .....it must be a worry for parents and children with lung and other health problems.
Very good care on the respiratory ward at Kent and Canterbury hospital, despite the hospital being under pressure from funding cuts. Triage ward a bit of a nightmare though with nurse with virus coming to take my details.
The nurse said I would be hard pressed to get anyone without a virus as all the team had had flu. I felt it surely wasn't beyond their capabilities to send those who had got past their viruses to the respiratory patients rather than nurses who were currently sick but they didnt seem to have thought of that
Have had good experience in Kent and Canterbury last autumn saw a fab doctor who inspired confidence , also the other docs I have recently seen for emergency meds and the little nurse in the triage was supportive too , seem to get better insight , information, and feel more supported than my GP
When I was in James cook I had been on bipap and I am on 1litre rest 2 litres ambultary there were nurses there from RAF camp one day and when I was on nebulisar she put my oxygen up to 6
I have very severe COPD. My answer would depend on which hospital. I have had horrendous experiences in one and, once I vowed never to go in there again, nothing but wonderful care at another. The problem being that my local ambulance service will not transport me to the one 26 miles away and I have to rely on my husband to take me when I think hospitalisation is needed.
At the first, I was admitted with what I now know was very high CO2 readings. They put me on a general ward (even though I am on oxygen 24/7) and after 5 days, no arterial blood gases and no X-rays I was diagnosed with meningitis and told I would be having a lumbar puncture! I signed myself out. The time before I was admitted with what I now know was a pneumothorax and was again not offered any tests and kept on the general ward but was told I had 'probably pulled a muscle coughing', even though I have no cough. I signed myself out that time too but only after wetting the bed due to a 20-odd minute wait for a commode.
Good grief, that's horrendous Toci. Thank goodness your husband is able to drive you to the other hospital - but terrible that you have to rely on him being able to do that.
I go to Wonford Hospital, Exeter. I've had two admissions because of lung problems. The first time I was admitted with severe dehydration (had been put on restricted fluids). CO2 retention was diagnosed and I have a BiPAP machine. The second time was an emergency admission and broken heart syndrome was diagnosed.
On both occasions the care and treatment given by medical and nursing staff was excellent. The domestic staff were also very caring. I couldn't fault it. Ok it was noisy and nights were disturbed but they were busy and it was understandable.
My only negative comment is that the second time, the staff were Italian, Spanish or Portuguese. Their English was good enough to deliver treatments and drugs but not good enough to ask patients how they were, how they were feeling. There was something missing from the care.
I'm afraid the first sentence there had me baffled - "as care in the community improves"? Not where I live. There is little point in starting from a false premise; hospitals this year have been pushed to crisis point, elderly care being so poor that patients who no longer need active interventions cannot be discharged as there is nowhere available to place them. I had just one day in hospital last year - cancer procedure not lung related - they do the best with what is available.
Care in the community is an aspiration DM. NHS England think it will save money but it will cost a huge amount. It will only be good if enough money is available to fund it.
I'm really sorry to hear that Dragonmum. Because I work with people across the UK, I do get to see a lot of really excellent community care. But sadly you're right - it's definitely not available everywhere. I always knew the term "postcode lottery", but I don't think I ever appreciated how extreme it could be until I started working at the British Lung Foundation.
I was taken to A&E from the mental health unit suffering from shortness of breath and low sats. 8 hrs later I was found a bed in what can only be described as a unused storage room!! Next day discharged. No treatment. Mental health team put in a complaint about my lack of treatment.
Admitted with Bilateral Pneumonia and Septicaemia over Christmas. To the Glenfield Respiratory unit. Hospital care was excellent, follow up post discharge was also good. Food was awful.
Bethany - I went into the hospital March 9, 2017 - hospital is in Mattoon, IL, USA - about 20 mi from my house. Ambulance came for me and helped me get into my daughter's car - she took me to Hospital. We waited about 6 hours until I was put in ICU and checked, then it was 10:30 before I was taken to a room. I learned later that if I had gone in the ambulance, I would have received faster attention.
I stayed in hospital two days and received excellent care. Drs determined that I had pneumonia. I was released with 5 days dose of antibiotics.
I have had three hospital visits, two admission one A&E.
The two admissions where non infection.
The first in a different city was the worse, taking twenty minutes to stabilise my breathing. At this point one doctor was prepared to let me home with the equipment and medication, the other doctor won I was kept in for three days in AMU.
The second A&E no treatment sent home with box of antibiotics despite not having any signs of infection.
Third admission at local hospital again mentioned being sent home with equipment and medication, to no avail kept in nebs twice daily, three days.due for discharge on Saturday no one could understand notes, kept in two more days, doctor not to pleased on Monday.
Received follow up visit from Respitory team.
I believe non infection patients should be offered the choic to be treated at home. Not only will this free beds but would allow the patients to judge with the respitory nurse whether this could be a long term treatment. With rescue meds to suit.
As you mentioned care in the community, today while shopping a chap approached me, ask about blue badge, as we got talking he as emphysema on oxygen 15hrs a day, no Ambulitory. One thing he mentioned was lack of information, which should include benefits.
I could relate to what he was saying, because it was only after my first hospital admission that the pace picked up both types of ECG, pulmonary rehablitation, oxygen non of which would have happened without a hospital admission, the appears to a assumption that if you don't see you GP more than usual then you must have things under control.
I performed a task at my GPs, ( stand up take coat of, flu jab , stand up put coat back on, short of breath) did the same at pulmonary rehablitation assessment for blood pressure, nurse noticed shortness of breath arranging for oxygen assessment, concluded 2lpm Ambulitory.
I believe I could have been on oxygen at least a year earlier.
There needs to be better local guidelines to help people with the full impact of a lung condition so people can be offered help sooner or before it is to late as in respect benefits.
The chap I spoke would most likely have met the criteria for DLA/PIP if known.
Not all carers, community nurse are understanding of respitory conditions.
It needs to be the right people doing the fight job, not one size fits all.
Postcode Lottery is so true from reading peoples experience's on here.
My local hospital in Kingston upon Thames have given me no reason to do anything more than thank them,on two occasions. For this I'm forever grateful.Perhaps cover during the weekends is a little stretched but then maybe that's always been the case.
I spent 8 days in hospital the chest ward Asthma readings were good was told I may have bronchitis, emphysema or COPD, was sent home when my pf improved after IV steroids, antibiotics 4 hourly nebs but was never told what caused my flare up or what it was I had even at clinic follow ups
I cannot fault the care I received by all the staff in hospital after a hip op then care in a NHS rehabilitation centre, iI was the only patient on oxygen, and had use of a condenser which had to be moved to the dining room and lounge when I did. There were some difficult patients but were all treated with respect and nothing was too much trouble for them.
I've been in three hospitals. St Richards Chichester, a couple of inpatient admissions plus masses of tests and regular meetings with my consultant. All completely positive, everything runs well, I feel properly looked after and the staff are all lovely. Southampton General, I was whizzed down there in an ambulance. I had a brain abscess, had a brain operation straight away and another a week or so later as the antibiotic hadn't worked. I was there for a month. I didn't really know what was going on most of the time, my last week I was more human! The bits I remember I was well looked after. A neuro ward is not easy for the the staff but they were all very patient, I couldn't read so the catering staff had to read the menu to me every day. Brompton, day trip and a week as an inpatient. This was enjoyable, as at the other hospitals the staff were super. London is obviously a bit of a draw for foreign nurses and there were quite a few Spanish, Portuguese and Filipino nurses. They all had perfectly good English (I mention this only because someone else mentioned the opposite) and everything went well, I had masses of tests. My hospital treatment has been entirely positive, but in every case as an inpatient I was keen to get home.
I was admitted for shoulder surgery into Chase Farm Hosp. Ended up in HDU for 4 days due to lungs collapsing. HDU excellent care after taking a bad turn was on on IVU antibiotics 1 hr nebuliser high oxygen etc. Eventually transferred to main ward where the care was awful. I clearly heard the nurse that came with from HDU say she's on 2 hr nebs IVU antibiotics until tomorrow then orally. Well only given I IVU and empty bag left in over night. Only once given nebuliser whilst on main ward. When I asked about nebs and antibiotics all they said is 'we don't work like HDU' surely someone with pneumonia needs to be given correct treatment. My infection lasted for 3 mths and still don't feel brilliant now still very breathless when I walk. Now having to have ct scans and heart tests.
When last having an operation for none COPD condition, my short stay in hospital was a terrible experience of long waits, the admission staff were very good, but I was left without drinks i.e water and toilet care due to staff shortage overnight, incorrect drip procedure and sent home with water infection due to lack of fluid and doctors not having urine sample tested. I have to stay in as I live alone and have COPD which requires post operative observation. I was on a four bed high dependency unit and noticed on the bed chart, written over weight nil by mouth so I was starved for forty eight hours nearly till I got home. I was infact asked by the hospital to make a formal complaint. But refused as the process only adds insult toi injury and takes years to resolve.
I find if your hospital stay is pre-arranged it is much smoother. Firstly you are on the respiratory ward straight away and your consultants are aware you are in.
On my last visit I had a long line put in and had a refresher on home IVs. After a few doses the area above my longline entry became inflamed, red and sore. It was late at night and the junior doc put a flush in and didn't take it out. When the nurses brought the Mero I refused to put it through. The doc came back and put in a cannula. The CF nurses the following day were not pleased he hadn't sorted it and were pleased I had stuck up for myself.
2 junior docs tried to put in a new longline and in the end a doc from the cf unit came. He was calm and full of confidence. With the aid of ultrasound it was put in very quickly.
I went home and completed the IVs - much better.
Going through A and E is a nightmare and I really wait until I am very ill as I know what's coming. It's really not the place for chronic illness. You explain history and symptoms so many times and can be there for hours.
Then, often, dependng on the bed situaltion you go to an assessment ward. History and symptoms again and again. Six junio doctors I had and one wanted to take me off all inhalers until I saw someone from respiratory. Well you can imagine that didn't go down well.
A respiratory consultlant, not necessarily your own, should visit assessment wards daily.
You get moved at all hours through the night.
It is not all bad obviously and the main thing is you end up going home in much better condition. It can be frustrating though.
When I was little physiotherapy was the mainstay of treatment but now you very rarely get a visit from a physio.
I still think we are very lucky to have our beloved NHS, especially when I see some unfortunate people in some countries who walk miles whilst ill to get the very basic of treatment.
I used to hate it in times gone by when the 'king pin' consultant would have his enterage with (it was invariably then a him). I soon learned to speak only to him and blot out everyone else, otherwise it would have been intimidating. There was something to be said about the system though - all the team knew exactly what the plan was.
One sentence is a bit restrictive - I was admitted to my local hospital just before New Year, I received one dose of intravenous paracetamol to bring my temperature down and then no further treatment for 3 days then 2 days later I was discharged from 'the old ladies ward' (because it was the only bed available) which was too soon and 2 weeks later I had to ring Papworth who prescribed more antibiotics and steroids.
The minute I begin breathing in cold air, my lungs tighten up and I get asthma. So hospitals (which, where I live in Australia, have very cold air-conditioning) are basically out for me. It doesn't matter how many warm clothes I wear, if I am breathing in cold air, I get sick. Recently, I had to have day surgery and was very concerned about having an asthma attack whilst under the anesthetic. I also had uncontrolled asthma at the time due to a recent chest infection which had finished but left me with a "fragile/asthmatic" chest. My doctor and anesthetist were fantastic. They gave me Ventolin through a nebuliser and brought in one of those blankets where hot air is blown through it. It absolutely helped. They listened and they acted. I was completely impressed and grateful.
When taking relatives to hospital, I always bring jumpers and coats for me and jumpers and woollen blankets for them. I place the jumpers over their feet and blankets over them as the cotton blankets provided by the hospitals are not helpful to people who are cold and lying in bed. The one thing my Dad often said was how cold he felt in the hospital and he had no problem with the cold usually. Keeping a normal temperature is a big help in fighting disease. Often my Dad's temperature dropped below normal but when I ensured that he was covered with warm blankets and woolen socks his temperature picked up.
Thank you Bethany for the positive reply but you haven't commented on the coldness of the wards which leads to unnecessary suffering in patients who are confined to bed. The cotton blankets we have here do not help to heat up patients and, as an asthmatic, I appreciate heat around my chest when I have a chest infection compounded with asthma. Being warm enough would certainly help the healing process - which is why I would have to be unconscious before being admitted to hospital. A few years ago, I nearly died with an asthma attack which was brought on by a chest infection. I chose not to be admitted to hospital as I knew I would get worse in a cold environment. I was lucky enough to be able to make that choice but I am certainly grateful for doctors and nurses who listen and help to keep you warm as they did with my day surgery.
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