Category Archives: Diseases and Health 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.”

References

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.

References

  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

Idiopathic pulmonary fibrosis (IPF) – isn’t it time we sat up and paid attention?

This is how Dr Hilary Jones ends his foreword in Inspiration, a landmark report published on February 29th 2016 to mark Rare Disease Day and designed to raise awareness of the fatal lung disease Idiopathic Pulmonary Fibrosis.1

In the UK alone, more than 15,000 people have IPF,2 characterised by permanent scarring of the lungs and loss of lung function over time.3 Yet despite these relatively large numbers, the average time to diagnosis is one to two years following the onset of symptoms – partly because the symptoms of IPF are similar to those of other, more common, lung conditions like asthma and COPD.Half of patients with the condition will not live more than three years from diagnosis.4

What might make IPF stand out though is the distinctive crackling sound that a doctor might hear when they put a stethoscope to the chest of a presenting patient.4

Although classed as a rare disease, the scale of the condition is such that it is forecast there will be 20,000 hospital admissions related to IPF in 2020, costing the NHS £20 million,5 and patient groups Action for Pulmonary Fibrosis and the British Lung Foundation – which participated in the report alongside patients and leading clinicians – believe much more could be done to raise awareness of the need for early and accurate diagnosis of IPF.

Why is it important to sit up and pay attention?

The relief often felt by patients on receiving a diagnosis of IPF can be short-lived when they realise the prognosis may be as bad as, or even worse than, it is for lung cancer.6 There are limited treatment options and no cure. Worse still, no-one knows the cause. On top of this the number of people with IPF and other interstitial lung diseases is increasing every year.4 But awareness among GPs, and difficulties in diagnosis, mean this is likely to be just the tip of the iceberg.

This was the driving force behind the production of Inspiration.

Inspiration, developed by Boehringer Ingelheim and pharmaphorum media, is the result of a collaboration between patients, patient organisations and leading clinicians, and can be found here: https://www.boehringer-ingelheim.co.uk/content/dam/internet/opu/uk_EN/images/IPFreport.pdf

References

  1. Inspiration, Boehringer Ingelheim. Available here: https://www.boehringer-ingelheim.co.uk/content/dam/internet/opu/uk_EN/images/IPFreport.pdf [last accessed March 2016]
  2. The British Lung Foundation, and the British Lung Foundation report, Lost in the system – IPF: the patient experience in England (https://www.blf.org.uk/Page/IPF-report-Lost-in-the-System#ipf-report ) [Last accessed March 2016]
  3. NHS Choices Pulmonary Fibrosis (Idiopathic) http://www.nhs.uk/conditions/pulmonary-fibrosis/Pages/Introduction.aspx [Last accessed March 2016]
  4. NHS Choices Pulmonary Fibrosis (Idiopathic) http://www.nhs.uk/Conditions/pulmonary-fibrosis/Pages/Diagnosis.aspx [Last accessed March 2016]
  5. Navaratnam V et al “The Increasing Secondary Care Burden of Idiopathic Pulmonary Fibrosis: Hospital Admission Trends in England From 1998 to 2010,” Chest Journal, vol. 143, no. 4, 2013.
  6. Richeldi L (2015) Idiopathic pulmonary fibrosis: moving forward. BMC Medicine 13:231 http://www.biomedcentral.com/1741-7015/13/231 [Last accessed February 2016)

Guest Post: Time to throw the CDF sticking plaster in the bin by Kevin Grogan

Kevin Grogan
Kevin Grogan

Cards on the table. I don’t like the Cancer Drugs Fund, never have. In fact, having reported on it extensively, I have never spoken to anyone, on the record or off, who thinks the CDF, introduced as a temporary fix, is a good idea.

Since its launch in 2011, while some patients have had access to life-extending innovative treatments, it became very clear very quickly that the £200 million set aside for the CDF would not be enough to meet demand. Even raising that to £340 million could not prevent the removal of some therapies, leaving patients in limbo.

It was therefore welcome news to hear that the National Institute for Health and Care Excellence and NHS England have begun a 12-week consultation on draft proposals outlining new arrangements for the CDF. Plainly put, the proposal is that the CDF will become a ‘managed access’ fund for new cancer drugs to give early access to those which appear promising but which have “currently uncertain evidence bases which are insufficient to support a recommendation for routine commissioning”, NICE notes.

New cancer drugs will normally receive a clear ‘yes’, ‘maybe’ (CDF funding for a time-limited period), or ‘no’ funding decision within 90 days of market authorisation. NICE says it will enable patients to receive new treatments that cannot yet be recommended for routine use but which have genuine promise, while real-world evidence is collected for up to two years on how well they work in practice.  The new scheme would operate from April 2016.

Some people believe this is a step in the right direction but I fear that we may be facing the wrong way. If we are looking to have early access to medicines, perhaps we should cast our eyes in the direction of the aptly-named Early Access to Medicines Scheme (EAMS).

Through EAMS, some patients have been receiving highly innovative cancer therapies before they had a licence and the scheme is complemented by a new NICE technology appraisal and NHS England commissioning process. It is currently funded by pharmaceutical companies and while such a financial arrangement is not sustainable long-term, it seems to me that this type of model  – with the government, pharma companies, NICE, the NHS and yes, patients –  working together to ascertain the real value of a medicine is one that is worth developing further.

The new CDF scheme is scheduled to begin at the same time as Sir Hugh Taylor’s Accelerated Access Review will present its report and recommendations. An interim report, published in October, set out five propositions to speed up access to transformative health technology and interestingly the first of those is “putting the patient centre-stage”.

Sir Hugh said patients were “vital at every step of the innovation pathway and that they needed to be supported to better understand and drive forward decisions about their treatment and care”. His team are looking at a structure that will “systematically facilitate patient feedback on and awareness of innovative products, as well as give innovators better opportunities to hear from patients about the innovations they want and need”. Could the same be said about the CDF? Nope.

The other four propositions are ‘getting ahead of the curve’, ’supporting all innovators’, galvanising the NHS and ‘delivering change’. Admirable sentiments and the interim report is the result of input by over 600 people and organisations working right across the development pathway, including clinicians, patients, the life sciences industry and researchers. You can read the interim report here.

Sir Hugh says he will work with his review team “to flesh out these propositions in ways that will be effective and will make a real and lasting difference to patients, system users, business and the NHS”.  We wish him well.

“Real and lasting”, something that the CDF will never be. As with other old sticking plasters, the best place for it is the bin.

About the author

Kevin Grogan has almost 20 years experience as a journalist writing about the pharmaceutical and healthcare sectors and was most recently senior news editor at PharmaTimes before going freelance earlier this year. He currently writes for a wide variety of publications on both sides of the Atlantic, advises companies about their communications strategies and often appears on television and radio to discuss the pharma industry. A fluent Spanish speaker, he likes Manchester United and listening to old men with funny voices, mainly Bob Dylan and Leonard Cohen.

Follow him at www.twitter.com/kevinatgrogan

3 ‘Must Dos’ for better partnerships between the NHS and Pharmaceutical Industry

The Lonely Road

Working with the NHS as a Strategic National Account Manager for Boehringer Ingelheim can be a joy, a frustration and sometimes a lonely experience. It’s great to be able to celebrate projects that improve patients’ lives, but there are other times when people make a negative judgement about working with a pharmaceutical company on preconception and that’s really frustrating. The lonely times come as a result of working alone to drive projects through a myriad of internal and external processes. It’s that principle that drove me to try something different.

 What we’ve learnt from partnering with the NHS

Earlier this year, I partnered with the Leadership Academy by undertaking the Mary Seacole Leadership postgraduate certificate course. During this I learnt about the work that the Leadership Academy had done with another pharmaceutical company on the Fellowship programme. I thought that the principle made a lot of sense and started to gain approval to run the same programme at Boehringer Ingelheim. Continue reading 3 ‘Must Dos’ for better partnerships between the NHS and Pharmaceutical Industry

How we made Twitter #COUGH

Background to our campaign

Profile V3Wednesday 18th November was World COPD day. BI UK’s respiratory team, in conjunction with PR Agency WE Consulting, wanted to raise awareness of the signs and symptoms of chronic obstructive pulmonary disease (COPD) by attempting to “make Twitter #cough”.

To raise interest in and conversations about COPD (both to increase awareness and to encourage earlier diagnosis), particularly around World COPD Day, we  developed a campaign to run across Twitter with the aim of creating a spike in mentions of the word ‘cough’ by using #cough in all tweets. When we measured the number of tweets sent across a time frame, and showed them in a graph, they mimicked the sound wave of a cough. Continue reading How we made Twitter #COUGH

Health Policy Briefing Document launches at Reception in Parliament

Parliamentary launch of BI Health Policy Briefing
Parliamentary launch of BI Health Policy Briefing

Tuesday 20th October 2015 saw the Communications Team launch BI’s health policy briefing document in the Strangers Dining Room at the House of Commons. The policy document has been developed by the team to outline specific asks of the recently elected Government on issues such as NICE, the Pharmaceutical Price Regulation Scheme (PPRS), Specialised Commissioning and in the therapy areas where we major.

Coinciding with the State Visit to Parliament by the President of China, there was a moment when it looked like people weren’t going to be able to gain access to the building, but we remained calm and welcomed over 50 guests to our reception. These were made up of a wide range of our stakeholders, including MPs from all sides of the House, Lords with an interest in Health, staff from the Department of Health and NHS England – including the Chair of NICE and the National Clinical Director for Diabetes – and a range of clinical stakeholders who had come to hear what we had to say, along with representatives from patient organisations with whom we have been working closely over the last few years. Continue reading Health Policy Briefing Document launches at Reception in Parliament

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”

Announcing: The ESC Grants for Medical Research Innovation

R&D_001

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