An unacceptable variation in the organisation and delivery of care for patients with chronic obstructive pulmonary disease (COPD) in England and Wales was the stark conclusion of the latest audit of acute units from the Healthcare Quality Improvement Partnership (HQIP), released on Nov 19, 2014, to coincide with world COPD day. A lack of out of hours' services, particularly specialist, outreach, and intensive care unit services, and poor availability of smoking cessation programmes, were highlighted as core concerns; 37% of units had no smoking cessation programme. Compared with the last audit that the HQIP undertook in 2008, respiratory nurses were flagged as being under-resourced; the numbers had decreased to 2003 levels—with 11% of units having no specialist nurses. Nevertheless, improvements were noted in some areas, such as the availability of palliative care (rising from 50% to 87%) and delivery of non-invasive ventilation (NIV; 81% of wards compared with 74% in 2008). An increase in the number of respiratory consultants also occurred, from a median of 3 to 4 per unit. However, in view of the gaps identified, the report was aptly named “COPD: who cares?”.
COPD has been described as an invisible disease, but around 3 million people in the UK are affected, and it is responsible for 5% of all deaths in England and Wales. With an increasingly ageing population, care of the patient with COPD will become more complex and costly as patients present with more comorbid conditions and case numbers continue to rise. Indeed, the HQIP report noted a 13% increase in medical emergency admissions for COPD since the 2008 audit so, if not addressed, the current shortfalls in delivery of care in the acute setting will potentially be magnified. Of note, the report authors stressed the importance of addressing the gaps in care identified, rather than seeing the audit as a number-crunching exercise, and made a number of recommendations. These recommendations included increasing the availability of 7 days a week specialist, out of hours, and outreach care, enabling spirometric data to be shared and universally accessed by primary and secondary care services, continuing the improvements seen in delivery of palliative care and NIV, and having a fully funded and resourced smoking cessation service. These recommendations mirror some of those made by a report from the All Party Parliamentary Group (APPG) on Respiratory Health earlier this year that aimed to reduce the unacceptably high mortality rate from chronic respiratory diseases and decrease the UK£4·7 billion spent by the NHS every year to treat these patients. The APPG flagged the lack of measurable goals or incentives for stakeholders to meet NICE guidance as a key barrier to making any inroads to improving patient outcome and reducing costs. Such reports are helpful to benchmark progress and promote a sea-change in the way care is approached. The HQIP authors suggest that development plans should now be put in place by individual units to enable quality and multidisciplinary care to be delivered consistently throughout the UK.
Improvement of care delivery should drive down NHS costs, but these efforts should not overshadow the ultimate goal, which is to prevent patients from developing COPD. The disease continues to lurk in the shadows, and in view of the prevalence and mortality associated with COPD, there's a surprising lack of awareness amongst the general population of symptoms and the association with smoking. As a result, many patients are diagnosed late in their disease course and The Lancet Respiratory Medicine highlighted earlier this year that missed opportunities for diagnosis also exist in primary care practices. Furthermore, new drug development is scarce, with small tweaks of already approved drugs being commonplace, rather than any investment into new drug classes and targets. However, the COPD community has collectively raised its voice in recent years to promote more research and awareness of the disease, and reports such as those described above will help move the disease into the spotlight.
Naturally, realism is needed to balance the priorities of any health-care system, which is a difficult task within current budget constraints. However, given the likely long-term cost benefits, the hope would be that at least some of the recommendations of this latest report will have been met in the next audit so that the NHS can clearly be seen to care about delivery of quality COPD services.
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very interesting but when I was just recently in hospital part of my treatment was education not only on my condition but also more on self management
A felt ok till i read that :()
Great piece even tho grim reading.
Am great beliver in its down to them to fix us up .. must be a young thing one a think is a good thing an all as in my opinion am not alone thinking that
Thanks Cough. The Lancet is one paper that relates the facts. That is a great article. Unfortunately Copd is an area that is not so well served by the NHS (and the government who gives BLF a piddling amount for research. The budget has actually I believe, been cut!). Help via the GP comes too late for many and the average GP sometimes has only cursory knowledge of the disease anyway and until relatively recently often diagnosed many patients as asthmatic.
Improvements have been made but the above article does echo a lot of what I've heard before. 'Individual units to enable quality and multidisciplinary care to be delivered consistently through the UK', has been bandied about for quite a while. Heard it at a seminar about four years ago. Sorry to sound negative Cough and I know the budget stretches only so far but how does cutting research help. 'COPD, who cares', huh?
Sara xx
No one cares except BLF and other lung charities and us all of course. I still say the main issue is the lack of information in the media about copd and the causes. Most smokers I have spoken to have no idea what it is or if they are at risk. Most ex-smokers don't know they can still get it even many years after they have given up. Everyone has heard of lung cancer haven't they?
Typical of this is an article I read recently in one of the national papers giving 3 reasons for a cough - it mentioned bronchitis as a cause of a chest infection and it talked about emphysema but put it in the rare category along with lung cancer and TB! Nowhere was there a mention of Chronic Bronchitis or COPD being a cause nor advising anyone to get checked for this. This lack of information is killing people and I wish BLF and other lung related organisations would push much harder for this information to be made common knowledge. It must be possible... x
Makes you wonder why Copd is so neglected. Possibly because it becomes more apparent and crippling in the later years for most sufferers!?? Most of us know how the elderly are often viewed!
Thanks bf. I agree with you but I also think it's to do with the 'blame' game. It's your fault for smoking etc. though in reality even non smokers can get it and general pollution plays a part too. But then again there is lots of publicity about obesity and I can't see the difference in the 'blame' game stakes. x
Ah yes, the blame game. Maybe the government who has raked in many billions over the years from the tax on the sale of tobacco (and still do) should put more of that money into research of tobacco related illnesses. They have, and do, fill their coffers with said taxes while preaching of the dire results of smoking and pollution. Hypocritical or what!?
Very interesting and I agree that more certainly needs to be done for COPD/lung diseases across the board. I also heard on Sky News today that TB is raising its ugly head more and more now. None of these diseases are very rare and even sarcoidosis is becoming more common it seems.
The only rare thing Pete has is cardio sarcoidosis and nobody but the Brompton really want to do anything about that either. Doctors do not generally know what to do about lung disease it seems and that is wrong. Too many are dying through lack of care and early diagnosis. COPD is a real threat to many and the advert we get on t.v. saying that a persistent cough could be lung cancer is just not good enough. A persistent cough needs checking out as it could be many things.
Medical profession - please wake up and stop treating lung disease as just being smoking related because it isn't. Take care all and wrap up warm. xxxx
You're right about this not always being a smoke related decease. My PR chaps mum has COPD Stage 2. Never smoked but worked in a glass factory. I met a chap in Wilko's the other day with a canula. We got chatting and it turns out he worked in a bus garage. They used to run the buses up for half an hour so he used to breathe in all those fumes. He tried to claim compensation but lost. I smoked for 40 years but spent time working with fibreglass. Another job was crop spraying and recently 14 years mucking out stables. Another theory of mine is that a few of us had lung problems when we were children and this maybe made us more susceptible to lung diseases in later life.
Pete also worked in a Bus Garage and had to have the buses running in a confined space but he already had sarcoidosis by then. He worked for a Cargo Airline at Heathrow many years ago and would load and unload the belly of an aircraft containing all sorts of things with no protection at all. He did smoke yes, but not everyone does/has. We had an elderly friend whose husband had COPD through working on building sites with cement dust etc. Governments and the medical profession should stop treating lung disease as being almost solely smoking related.
Hope you and the other dragon are doing ok Puff. xxxx
Many thanks Cough. Its often apparent on the forum how much clinical care and awareness vary in different parts of the country.
Im glad they highlight the problem of late diagnosis - there could easily be protocols for regular spirometry screening at GP level for smokers and ex-smokers so that ppl can be diagnosed at the mild stage and be educated about diet, exercise and smoking cessation and then be able to lead a near normal life. The BLF calls those undiagnosed with the condition the Missing Millions.
And like the report says, being able to share spirometry results between the different care levels would be hugely helpful.
We in Kent are lucky - East Kent anyway, not sure about the west. We have a specialist community team where you can get access to an out of hours team if you have an exacerbation (assuming it has come on in the week in time to make that arrangement).
Loads of pulmonary rehabilitation on a rolling programme.
Multi-disciplinary (ie docs, consultants, resp nurses, physios etc) education days happen regularly with patient representatives sitting on panels (I've done this so i know how good these days are, and well attended by health practitioners.)
Another report - will it make any difference? Trying not to be cynical
COPD has never had a high priority but whenI read local health-care planning ; it seems to have a much lower profile than it did. As you are most probably aware, I lost my mum to lung cancer last year; she had severe copd following twice having TB when I was young. I was hurt to learn that the Nurse Practioner who initially visited her when she became very ill, apparently said, she can't go to hospital because we have to divert elderly people with copd away from hospital. Mum was placed in a residential home for respite care. She deterioated & about 3 weeks later was admitted to hospital as a medical emergency.; there she was diagnosed with terminal cancer & discharged home for palliative care. I don't think an earlier admission would have saved her life; in her own words she said ' I am 92 & had a good innings.' My point is without the hopsital admission & tests, she would not have been diagnosed; therefore wold not have been given the care & pain control she was. It seems to me that in order to correct the outlier respiratory death status that were occuring , the solution was stop them coming into hospital. Sorry Peeps, i am quite sad , angry & anxious writing this. Love Magsx
Thanks for this, coughalot! A very interesting article. I have thought for a long time that COPD does not have the recognition it should have from GP's; my own GP actually told me she didn't really know anything about it! I admire her honesty but this honesty could have been followed by a referral on to someone who does know something about it! Articles like this are very rarely seen by the general public and so they are unaware of the trials and tribulations associated with COPD. More articles like this are needed in daily newspapers. Thank you again.
Thanks for your reply juney. I would like to see a Horizon programme or something similiar on mainstream TV. You see so many food ones etc. so why not COPD? It would benefit a lot of people and other lung diseases would naturally come into this.
I would like to see BLF and other lung charities getting together with programme makers and get it done.
How about it BLF? Is this in the pipeline? xx
at least this article addressed COPD. No mention of the rest of us, which of course, adds to the disgrace of the situation. If The Lancet can't see that provision for ALL lung conditions is grossly deficient there really is no hope.
Yes I understand what you are saying Standing and I agree with you. However copd is by far the most common lung condition and funding should be on a par with other common illnesses such as cancer and heart problems. Maybe if COPD was given more publicity and funding then other less common lung problems would follow? x
Definitely agree with you, coughalot! TV probably even better than newspapers as bigger population of viewers! I think you have done a great job here by introducing the article in the first place! BLF should take note, as you say.
How about Pharmaceutical companies doing that too? Prescription drugs are the third biggest killer after heart disease and cancer and the tax-payer has shelled out £1 billion in the last decade on patches and gums which have at best a 6% success rate. At least smokers pay more in revenue than they cost the NHS.
Great post! With all options to look at but as it states there are constants on spending which knock it all back? In a good way they are increasing palliative care but if they can not let it get to that stage earlier they could move the funds to support?
My so called Lung specialist seems to know it all in theory. But makes a statement without taking in all the factors? The fact that I questioned him with "If my lungs were 90% functional with PH at it's present level you would expect me to be able to do A B C Etc." To get the reply "Yes" so with my lungs only being 57% and the paralysed diaphragm and fibrosis with my other heart conditions I have, would that not make it less easy to do A B C? to get the reply "That's why we stopped you going to PR as you are exercise intolerant?" Just leads to more confusion and frustration.
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xx
Blackpool and now. just waiting.
Just waiting to go to theatre
just another quick question
Dance - don't just exercise
