Tag Archives: NHS

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

Guest Post: My experience working with BI as an NHS Fellow

Fran Lowery
Fran Lowery

I am currently employed by the NHS working as a Cancer Services Manager at Royal Devon and Exeter Foundation NHS Trust (RDEFT) in Exeter. I was seeking a leadership development opportunity and applied for a 1-year NHS Fellow post with BI through the NHS Leadership Academy. Following a successful interview I started working with BI two days per week from 1 July, starting a fantastic opportunity to work with pharma to benefit patients and develop my leadership skills.

Over the past two months I have been warmly welcomed into BI by a variety of teams including the Brand Managers, Account Managers, training team, Public Affairs & Patient Advocacy and Market Access, Pricing and Outcomes Research. I have met a wide range of staff to discuss and understand the issues which BI faces, and offer advice or information aiming to help from an NHS viewpoint. I’ve been involved with a number of really interesting pieces of detailed work. This has included reviewing the commissioning process for one of BI’s medicines which is due to be launched soon. I have also being involved with service improvement days to review the business planning process. Taking the opportunity to review strategic documents and comment on them from an NHS perspective has been useful to try to help to align the language used by the NHS with BI.

Continue reading Guest Post: My experience working with BI as an NHS Fellow