Who is looking after Scotland's lungs? - a roundtable discussion on lung health
Despite being Scotland’s third biggest killer, there is no national strategy for respiratory disease
Scotland has one of the highest rates of lung disease in the world, with the highest rate of male mortality from chronic obstructive pulmonary disease (COPD) in Western Europe and the second highest in Western Europe for women since 1993.
In lung cancer five-year survival rates, Scotland achieves 8.7 per cent compared to a European average of 13 per cent. It remains the biggest cancer killer.
Behind cancer and heart disease, respiratory diseases, collectively, represent Scotland’s third biggest killer, according to the 2014 National Records of Scotland.
Despite this, while stroke, heart disease and diabetes are supported by Scottish Government five-year improvement plans, Scotland has no specific respiratory strategy or framework.
This was the subject of Holyrood’s recent roundtable event in association with the British Lung Foundation (BLF) and Boehringer Ingelheim, which saw leading respiratory clinicians, researchers and NHS managers discuss a way forward.
The BLF’s chief operating officer, Steven Wibberley, said figures showed there was underfunding and a “lack of cohesion” across all four nations of the UK.
Compared to falls in the death rates from heart disease and stroke in Scotland, he said, deaths from respiratory diseases had seen “little change over the past 20 years in Scotland”. Research funding too, had not improved compared to areas like cancer.
“Even within cancer we don’t see it going into lung cancer, we see it going into breast cancer, and we see the benefit of that in improvement to survival rates in breast cancer that aren’t replicated in lung cancer.
“I think across the board that lack of investment and lack of profile happens across all parts of the UK. Why that happens is a more interesting and longer conversation to have,” he said.
The respiratory National Advisory Group (NAG), chaired by Peterhead GP Dr Iain Small, has had limited attention from government, and the Scottish Thoracic Society’s Dr Tom Fardon questioned who was best placed to lobby government on the respiratory community’s behalf.
The Scottish Parliament, surprisingly, doesn’t have a cross-party group for respiratory disease, but it does have one for asthma. “I think from a charity point of view, yes, we can lobby but what is it we’re lobbying for? Does Scotland does have a clear set of priorities for respiratory health?” asked the BLF’s head of Scotland and Northern Ireland, Irene Johnstone.
Professor Mahmood Adil of NHS National Services Scotland said intelligence was paramount in driving the agenda forward . Currently there is no comprehensive way of measuring the clinical outcomes or financial impact of respiratory disease, he said. There are 278,000 people in Scotland with diabetes, and the same number with asthma, Adil pointed out, but diabetes has detailed data.
With more data coming in from local authorities via health and social care partnerships it will be easier to create patient pathways with a holistic approach, he said.
Small said it was a question of what could be measured. “One of the problems respiratory has, right across all the conditions, is that we don’t have simple easy measurables yet,” he said.
Orkney’s public health director, Dr Louise Wilson, said data was only useful if it can “actually land in a meaningful way on people’s desks to help them make the decision” and drive further action.
“Data to intelligence is a journey,” said Adil, conceding most collected data and intelligence is about physical illness as opposed to mental and social wellbeing.
Glasgow’s health inequalities and improvement lead, Anna Baxendale, said looking at people’s physical mental and social wellbeing would mean early interventions. “It’s how do we take it back to intervention at a point when people are not necessarily on a disease pathway, but if they are on a disease pathway, how do we do it early enough?” she said.
Services, too, are not directed to those most in need, suggested respiratory consultant physician, Dr George Chalmers.
“We’re still a long way off matching the predictors of lung disease with the services for lung disease. The services for lung diseases are, by and large, a historical accident. They happen where hospitals are. They happen where large acute specialists are. There’s no strategy behind that, we’re not targeting areas of need,” he said.
Small added: “What health has always done, and guilty as charged, is concentrate on the physical bit. And to some extent, the psychological because that’s a big part of what I do in primary care as well.
“Maybe, just maybe, with health and social care integration there is an opportunity to start to say, here’s a population at risk, here’s a population who have early disease, what are the interventions we need to have available for those people so they take responsibility for themselves, to change and do something about that, and for us to help them with that.
“That’s way beyond a health centre. That can happen in a park, for goodness’ sake.”
Leading physiotherapist Elaine Mackay said her rehabilitation work had been focused on areas of need, but some patients had “zero expectations to have much help with their condition”.
Chalmers said a lot of his patients have an expectation of ill-health. “They grow up expecting, aged 50, to be breathless,” he said.
Paediatrician Lana O’Hara said this also had a knock-on effect on children. “The adult will say, ‘yeah, they’re coughing every night, they can’t run in the playpark but they’ve got asthma, so have I, and I’m the same’. It’s coming back to how do we address that standpoint in the parents,” she said.
Fardon said early disease is difficult to detect, with few coming forward for COPD testing.
“People don’t present because increasingly we’re a sedentary population, so if you don’t exercise, you don’t get breathless, you don’t know you’re more breathless than you were last year. You don’t reach your physical limit so you don’t know about it,” he said.
Recent initiatives on raising the profile of stroke was raised as an exemplar of what can be done to improve awareness.
“Everybody on that street in Glasgow knows what a heart attack is, and now what a brain attack is, but going into hospital with an exacerbated state of COPD, that’s neither here nor there, but the mortality associated with an exacerbated COPD within a year is three times what it is for going in with a heart attack,” said Fardon.
Raising awareness also has preventative benefits, which may fit into the ethos of the recently published National Clinical Strategy. With both community-based prevention and self-management included, chair Pennie Taylor asked if it was more of “a wishlist” than anything else.
Is the system doing enough to support people to self-manage, asked Wibberley, which is well established in ashtma but less so for other respiratory diseases.
“I’m pretty sure the system isn’t doing that,” replied Small.
COPD patients with intermittent acute attacks often go to hospital when they don’t need to, he said.
Fardon disagreed. “We see in Ninewells about eight to ten a day, so big numbers, we don’t do a lot different in hospital than the management that happens at home, but what we do do is make sure they take the medicine they’re prescribed, because we give it to them, and care for them. We nurse them and we keep them in bed. Bed rest. And we give their family and care and support network some rest. That is incredibly important,” he said.
However, not all hospitals are equally expensive, he pointed out. Wilson said the new integration authorities have respiratory beds “in their commissioning gift”, adding, “will it be articulated in those strategic commissioning plans” due in April?
Small said: “If health and social care integration is going to solve all of this, and I still do believe that from time to time, then I would see a model where I, as a general practitioner, can contact my local care manager and say Mrs Buchan is sick and needs a few days rest, and so does Mr Buchan, and a bed would appear in a local nursing home, community hospital or whatever where Mrs Buchan could go.”
Again, smaller community hospitals are in the new clinical strategy, but Fardon said there were rumours of smaller hospital closures in Tayside following the recent closure of Brechin.
Respiratory nurse consultant Phyllis Murphie said she had seen good models of integrated working in Northern Ireland, “links between respiratory physicians and GPs, GPs with special interest and teams of nurses with specialist nurses and AHPs, physios all working together in a seamless, joined up way.”
Similar models have been tested in Glasgow and Dundee, the group heard. Managed clinical networks (MCNs) across the country hold learning events, but there remains no national strategy.
Murphie, who is the vice chair of the NAG, said the group had been trying to draw together a national respiratory improvement plan. “We’ve not got anywhere near making a start on that. We have the will, but we do not have the way,” she said.
Wibberley said a delivery plan in Wales was beginning to show some benefits. “In Wales the government was willing, it wanted to receive that and wanted to engage with the respiratory community to co-develop that. That’s the position we need to get to,” he said.
Attempts to create a respiratory alliance in England had been less successful, the group heard.
Every MCN in Scotland sends a clinician and a manager to sit on the NAG, with representation from the three main respiratory charities in Scotland – the BLF, Chest Heart and Stroke, and Asthma UK. What is needed, it was agreed, was more genuine engagement from government.
“That’s why we’re here. We want to form a partnership in respiratory health and we don’t feel we have one,” said Fardon. This should also include public health, pharmacy and informatics, he said.
With a collective voice, what could be achieved in lung health in Scotland?
“We need to work upstream,” said Adil. “If you want to influence the politicians and policy makers, the CMO and others, we need to have a value-based proposition. If you achieve this secondary or primary prevention, this is an investment. This is where the game is.”
Baxendale pitched for a national smoking cessation campaign. “We know certain things work. If we have national campaigns around smoking cessation, more people turn up at smoking cessation services and even stop smoking. We haven’t seen a national campaign for the last three or four years,” she said.
Murphie called for equitable access to pulmanory rehab and quality end-of-life care.
Mackay said investment is needed in training because of the number of practice nurses close to retirement.
Researcher Lynn Morrice said access to data was essential. At the moment, she said, it costs a fortune. “Actually, access to primary care data is very expensive, and it’s very fragmented,” she said.
“The nightmare situation which is currently happening is we’re paying private companies huge amounts of money to mine our data and sell it back to us,” said Chalmers. Adil said the NHS had been “too humble” at using its extensive collected data.
“We can’t answer every question but if there’s a common question we must provide you that information. This is the reason we exist,” he said.
“Presumably, it’s up to the respiratory community to think what are the big questions,” said Johnstone.
Digitisation of the Community Health Index (CHI) number has opened up all sorts of opportunities for using data effectively, argued Small.
“My first big ask is we end up in a Scotland where people got an early and accurate diagnosis of their respiratory disease,” he said. He also suggested medicine optimisation was key, something the Chief Medical Officer has also talked about.
“If we spend less money on inappropriate therapies, we can easily afford to spend more money on appropriate therapies. I am absolutely sure of that,” he said.
Lung health, not lung disease must be the focus, it was agreed, which brings in other factors like air pollution.
“We make the active choice to eat what we eat, but we as individuals, right here in this city, don’t have a choice of what to put in our lungs in the next half an hour,” said Small.
“The question is who is looking after our lungs?” asked Chalmers. “The government should be looking after our lungs through air quality, communities should be looking after our lungs through the prevention model, through exercise, healthcare professionals should be looking after them through diagnosis, treatment and information. I think if we ask those questions of the government, they have a big responsibility too,” he said.
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