Tag Archives: Patient Care

Tackling the growing burden of IPF

Sarah Agnew and Annette Duck, ILD specialist nurses based in the NorthWest of England – a region dealing with the greatest prevalence of Idiopathic Pulmonary Fibrosis (IPF) in the country – outline the challenges and the way ahead in tackling the impact of this deadly disease

More than 4,200 people are now living with idiopathic pulmonary fibrosis in the North West alone, the highest population of patients with this fatal lung disease in England, a network meeting of specialist respiratory nurses heard recently.1

Understanding this figure is critical because it’s a reflection of the referrals we then see in our services, says Sarah Agnew, ILD specialist nurse at Aintree NHS Trust. “However, our referral rate for IPF is only around 150-200 patients a year – so where are these individuals, and why aren’t they being referred to specialist centres?”

Whatever the situation, Sarah explains, there is a clear impact on service provision – both currently and in the future. “These patients should be seen by a specialist centre and having specialist input – particularly in hotspot areas – even if it’s just to get a confirmed diagnosis from a multi-disciplinary team as set out by the NICE Quality Standards2.”

With this in mind there is also a distinct possibility the condition is under-diagnosed, Annette Duck, independent ILD specialist nurse adds. “I suspect a number of patients are under the care of general chest physicians and are not referred to specialist centres where a true diagnosis would be made,” she stresses.

Overcoming diagnosis challenges

“So although things are improving, under-diagnosis, mis-diagnosis and a lack of awareness of both services and available treatment remains,” Sarah points out. Even among those individuals referred to specialist centres, around 20% will be given an alternative diagnosis – usually another ILD, or even COPD, she says.

Ultimately, Annette adds, these are complex conditions to diagnose even with specialist expertise and it is critical these patients are picked up earlier in the pathway. “We still have cases where patients are referred to us with evidence of significant disease progression but because of the length of time it’s taken to get to specialist care may be towards the lower end of the eligibility criteria for treatment – when we know people are less likely to tolerate the drugs – or indeed too advanced to receive medication.”

So one major challenge in diagnosis and care, both Annette and Sarah stress, is ensuring patients are referred from GP to general chest clinics into the specialist ILD multi-disciplinary team. “The red flag for GPs should be an individual presenting with cough, crackles and breathlessness on exertion,” says Annette. “We have to recognise that GPs are under a huge amount of pressure so we have to make it simple, we have to make it snappy, it’s got to be one of their targets.”

Tackling resource shortfalls

Then, it’s having the resource in place to manage the sheer number of patients coming through to specialist centres. Currently, Sarah explains, the ability – or inability – to access specialist respiratory nurses is “a big problem in the centres around England. There just aren’t enough to go around.”

So ensuring patients are sent to the specialist centre, having the resources to be able to see them in a timely manner and accessing the support required to be able to treat and manage these individuals is a significant problem, they note. “We should not have to compromise the care we give because we haven’t got the resources in place.”

One way to overcome this hurdle, say Annette and Sarah, is to ensure information is cascaded down from the specialist centres to those on the front line in primary, secondary and tertiary care. In my view, says Sarah, we need more ILD training in the UK to educate GPs, practice nurses, community nurses and palliative care services – not only about the need for early diagnosis and symptom checkers – but the level of local care and support required for people living with IPF. “It’s a team effort, we’re all in this together.”

Of course, the provision of education and information extends not only to HCPs throughout the care pathway, but to the patients and families themselves.

“Patients are understandably frightened and come into clinic wanting to see a healthcare professional who understands their diagnosis; they’re hungry and desperate for information about their disease and their future prognosis.”

The information cascade

Although the information given to patients is vastly improved compared to five years ago, a large number of individuals and their families are still attending clinic armed with very little understanding or knowledge of their condition or the services they are entitled to, Sarah adds. After diagnosis, it’s about empowering patients to go to their GP and tell them that they’ve got a serious condition and they need help – and how to access information and support in the community.

“Patient power is critical – if the individuals and their relatives stand up and start mobilising the patient voice it will bring IPF out from under the radar and ensure it is made a greater priority at government level.”

“But equally we can’t forget how far we’ve come,” they say. “This isn’t the time to take our foot off the accelerator and pat ourselves on the back, the key thing is to keep the momentum up and continue pushing forward.”


UK/RESP-161434    Date of preparation: October 2016

Provide high quality care for people with IPF

inspiration-2-front-pageIPF World Week, which ran 17-25 September, saw a flurry of multimedia activity across the globe to raise awareness and knowledge of Idiopathic Pulmonary Fibrosis (IPF) – a rare and little understood fatal lung disease with escalating patient numbers and a substantial and disproportionate impact on individuals, carers, families and healthcare services.1, 2, 3 

This “social emergency”, says the European Idiopathic Pulmonary Fibrosis & Related Disorders Federation (EU-IPFF), raises the flag for greater awareness of IPF among key stakeholders and better access to care and services for patients – sentiments that were central to the ethos for creating the latest issue of Inspiration.4

Launched in IPF World Week, Inspiration 2 brought together leading clinicians, patients, carers and advocacy organisations to explore access to treatment, support and services for people living with IPF in the UK. As Professor Mike Morgan, National Clinical Director Respiratory, NHS England, explains in the foreword: “Inspiration 2 contains a stark view of the realities of IPF and the challenges we face to provide high quality care and support for all those affected. It would be nice to think that in England we can develop a system of care for such patients that will become the envy of the world.”

As one of 200 orphan lung diseases, IPF comes with a prognosis that is often worse than for lung cancer. Yet unlike the picture for cancer in the UK, where if a GP suspects a malignancy they must refer to a specialist within two weeks of presentation, no such targets exist for any respiratory disease other than lung cancer. As a consequence, it can still take up to two years for patients with IPF to be diagnosed after experiencing their first symptoms.2

For Fiona Ballantyne, a 49-year-old IPF patient who finally received her diagnosis in February 2016 after years of breathing difficulties, this was certainly the case.

Despite being referred for further tests in August 2014 after contracting pneumonia – and receiving subsequent steroid treatment – it wasn’t until Fiona’s consultant referred her for a lung biopsy in December 2015 that an accurate diagnosis was given.

In an interview in Inspiration 2 Fiona – who also received broad coverage in the Scottish press – revealed she felt “numb and scared” when she was first informed she had IPF, but remains optimistic for the future after recently being told she is too healthy for a lung transplant.

“It is great to be able to give the patient perspective in this second edition of Inspiration,” notes Ruth Sabella, Project Manager at the British Lung Foundation. “Throwing the spotlight on IPF is important in helping raise awareness and funds for research into this little known condition.”

Although a recent global survey of more than 120 people living with IPF found nine out of 10 patients were happy with the way their doctor informed them of their diagnosis, participants also suggested having access to information about the support, treatment and realities of living with IPF would have been helpful,5 a point echoed by Fiona in Inspiration 2. “In my view the information supplied to patients could be improved as most of my knowledge and understanding comes from my own research.”

Inspiration 2 champions the huge advances that have been made in IPF care and sets out the collaborative vision for the future, epitomised in the words of Professor Morgan: “In the past, people with IPF have had very little support. Although things have improved with the introduction of evidence-based treatment – including new drugs and rehabilitation – it is important these are correctly delivered to all those who would benefit.”

Many believe with the number of people being diagnosed with IPF in the UK steadily increasing year on year, government and policymakers need to start prioritising this condition as though it were a cancer.

Boehringer Ingelheim, working with pharmaphorum media, unveiled the first issue of Inspiration6 on Rare Disease Day 2016 to raise awareness of IPF and the need for early and accurate diagnosis of this devastating condition. Inspiration 2 evolves the story by exploring the current care and treatment pathway for IPF patients – and the hopes for the future.


  1. Navaratnam V et al (2011) Thorax doi:10.1136/thx.2010.148031 (http://thorax.bmj.com/content/early/2011/03/29/thx.2010.148031.full) (Last accessed September 2016)
  2. British Lung Foundation (2016) The Battle for Breath https://www.blf.org.uk/what-we-do/our-research/the-battle-for-breath-2016 (Last accessed September 2016)
  3. Action for Pulmonary Fibrosis (2016) Fit for the Future: Future-proofing care for patients with IPF http://www.actionpulmonaryfibrosis.org/research/fit-for-the-future-future-proofing-care-for-patients-with-ipf/ (Last accessed September 2016)
  4. Inspiration 2 (2016) https://www.boehringer-ingelheim.co.uk/content/dam/internet/opu/uk_EN/images/Inspiration2FINAL.pdf (Last accessed September 2016)
  5. Data on file. Boehringer Ingelheim. DOF NIN16-13 Think of Everything Global Patient Survey 2016 (Last accessed September 2016)
  6. Inspiration (2016) https://www.boehringer-ingelheim.co.uk/content/dam/internet/opu/uk_EN/images/IPFreport.pdf (Last accessed September 2016)

UK/RESP-161432 Date of preparation: September 2016

Greg Woodley, Marketing and Communications Director at Roy Castle Lung Cancer Foundation

Guest Post: #Beatboxcough

Greg Woodley, Marketing and Communications Director at Roy Castle Lung Cancer Foundation
Greg Woodley, Marketing and Communications Director at Roy Castle Lung Cancer Foundation

To everyone at Boehringer Ingleheim I would like to say thanks for supporting Lung Cancer Awareness month this November. We would also like to say a huge thanks to all those involved in the Beat Box Collective Cough Campaign for delivering a truly innovative and impactful campaign  which is really going to make a difference.    I’m the Marketing Director at Roy Castle Lung Cancer Foundation and it is some of the best awareness work I’ve seen.  We’re the only Lung Cancer charity in the UK and we’ve been fighting lung cancer for 25 years – I’d like to tell you a little about one of the biggest cancer challenges the NHS faces.  Continue reading Guest Post: #Beatboxcough

Guest Post: Asthma UK’s Andrew Proctor on “When simplicity can save lives”

Tackling asthma review DNAs with surprisingly easy measures can save lives – and clinician stress

Andrew Proctor - Director of Advice and Support, Asthma UK
Andrew Proctor – Director of Advice and Support, Asthma UK

When former star of The Apprentice, Stuart Baggs died in the summer from an asthma attack at just 27 years of age, it caused ripples across the national news. Media interest focused on his celebrity and relatively young age, but also that he didn’t have a severe form of the condition. The sad truth is that this wasn’t an isolated incident – three people die from asthma every day. We know that every 10 seconds someone is having a potentially life-threatening asthma attack. The National Review of Asthma Deaths published last year revealed that over half those who died were being treated for mild or moderate asthma, and many of these deaths could have been prevented with better routine asthma care. It’s frightening to witness a child, business colleague, friend or family member having an asthma attack, and utterly tragic when anyone loses a loved one through a preventable asthma attack.   Continue reading Guest Post: Asthma UK’s Andrew Proctor on “When simplicity can save lives”

Walking the talk on patient centricity

White Paper Front Page

Embracing patient-centric healthcare

The days of pharma merely developing and pushing pills are long gone as the sector embraces patient-centric healthcare. Quite how warm that embrace is varies from company to company but the importance of trying to see the world through the eyes of the patient is doubted by none.

While we still talk about molecules, clinical trials and regulations, the patient is slowly but surely being placed at the heart of everything we do. They are no longer passive participants but real collaborators.

The pharmaceutical industry has, I believe, along with governments and clinicians, come to realise that the paternalistic attitudes towards healthcare in the past, of believing that they know what’s best, will no longer wash. In the UK government’s consultation document, ‘Liberating the NHS: No decision about me, without me’, published in May 2012, declared that “genuinely shared decision-making is about giving everyone more say in decisions about their own care”.

Continue reading Walking the talk on patient centricity

Announcing: The ESC Grants for Medical Research Innovation


I am a clinical researcher at heart. And, for that reason, I love the opportunity of attending clinical conferences. They are an opportunity to hear the latest developments and innovations in patient care; discuss new data on compounds and medical devices / technology and meet friends and colleagues old and new.

Innovation is the lifeblood of pharmaceutical companies, and it is the driver of better patient care. It comes from all sources – academia, industry and governments. It can be incremental or ‘step-change’.

Today, we are in the middle of one of the world’s largest and most influential cardiovascular conference: the European Society of CardiologyESC Congress 2015

During medical congresses, experts from academia, often paired with scientists from pharmaceutical companies such as Boehringer Ingelheim, present their data from clinical trials. It is a welcome public opportunity to share the data and have it challenged by peers.

This year will be special for us though. As I’ve mentioned before, Boehringer values partnerships. This year, we are supporting the ESC with an independent grant to launch an initiative geared towards encouraging researchers with innovative ideas to tackle thromboembolic diseases. At this congress the ESC will be launching the ‘ESC Grants for Medical Research Innovation’ programme that will offer four grants of up to 400,000 euros each to researchers through a unique and competitive process.

Continue reading Announcing: The ESC Grants for Medical Research Innovation

Diabetes: 3.2 million reasons to focus on patient care

On Monday this week you may have seen in the news that the number of people diagnosed with diabetes in the UK has soared by 60%1 in the past decade. It was also mentioned that the spending on diabetes drugs has increased during that time and we can all appreciate that the financial resources available for paying for drugs in the UK are not limitless. It is important that money is spent on pharmaceutical clinical trials to assess safety, efficacy and more importantly the complications of diabetes which can be associated with substantial costs.

Barbara Young, the chief executive of Diabetes UK, said the government needed1 to act to prevent new cases and improve treatment for those already affected. She said: “Diabetes already costs the NHS nearly £10bn a year, and 80% of this is spent on managing avoidable complications.  So there is huge potential to save money and reduce pressure on NHS hospitals and services through providing better care to prevent people with diabetes from developing devastating and costly complications,” she added.

So the focus cannot be simply on the laboratory blood glucose values for a patient with diabetes but should be on providing treatments that reduce the risk of diabetes related complications.

In addition, pharmaceutical management should be on clinical guidelines that support an individualized approach to diabetes care.

Continue reading Diabetes: 3.2 million reasons to focus on patient care

Innovation Beyond the Pill or Innovation of a Pill

Pill Capsule --- Image by © Royalty-Free/Corbis
Pill Capsule — Image by © Royalty-Free/Corbis

In my first post, I talked about the topic of innovation and offerings ‘beyond the pill’. Today, I would like to share two pieces of news with you that I have very recently come across.

Innovation Beyond the Pill or Innovation of a Pill

Innovation beyond the pill is of high interest to many in the pharmaceutical and wider healthcare industry, but did you see the recent news on innovation of a pill? The US FDA approved, for the first time, a pill produced by 3D printing. The way I understand it, rather than having ink in a cartridge like the printer you may have at home, this 3D printing technique uses drug substance in a cartridge and produces a pill which is more porous than conventional ones. This pill dissolves more quickly on contact with liquid, making it easier to swallow. I consider this a truly patient-centric innovation!

Patient Centric Innovation

In this context, I also learned that researchers at the School of Pharmacy of University College London are working on a technique to 3D-print pills in different shapes, from pyramids to doughnuts, using a technique known as “hot melt extrusion”. While different shapes may be cute and interesting, there is of course a deeper intent behind this. Different shapes of pills can result in a different time pattern of release of drug substance in the gut which again may be applied to the benefit of patients.

What I also found interesting was an article in the current edition of the New England Journal of Medicine, titled “Innovation as Discipline, Not Fad” by David A. Asch and Roy Rosin. The authors describe techniques called “Vapor Test”, “Fake Front End”, and “Fake Back End” to explore in a more quick and dirty fashion whether novel and innovative approaches would be accepted by the community or not. I have asked my team to read the article and to brainstorm whether one or more of these techniques would be applicable to what we do in pharmaceutical industry and to explore whether we could apply this to the benefit of our customers and therefore ultimately also to our company. Perhaps, you find this article and the described techniques also to be of interest in your respective context. If so, do start a discussion in the comments section of this post – I’d love to hear your thoughts!

The health care environment in the UK is rapidly changing, but I am optimistic that true innovation will continue to be rewarded!

It’s never just ‘a bit of Asthma’

Doctor : Patient meeting

Like many of you, I woke up last week to the very sad news that the high profile apprentice star Stuart Baggs’ death was due to an asthma attack. At first I was sad, for him and for his family and friends. Then a creeping frustration came over me, a frustration that despite all the focus and attention poor asthma care and treatment has received over the past few years, people are still not taking asthma seriously, people still don’t realise it is a killer. On the radio, the aptly named Dr Brian Hope mentioned that fatal asthma attacks can affect anybody with asthma, whatever severity their disease has been assigned. He stated that symptoms generally become more noticeable in the days leading up to an attack and that people really ought to know how to manage their symptoms.

Continue reading It’s never just ‘a bit of Asthma’