Tag Archives: NICE

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

Diabetes: New NICE Guideline on the management of Type 2 diabetes

This year NICE has been updating the clinical guideline on the management of type 2 diabetes. Boehringer Ingelheim has welcomed and contributed to NICE’s extensive consultations on the draft guideline and acknowledges that NICE has now addressed many of the issues seen in the initial draft. The current updated guideline published this month[i]  now reflects a much more pragmatic approach to patient centred care and is representative of current glucose lowering therapies. I am pleased that the new clinical guideline will help to improve the care of patients living with type 2 diabetes.

Since 1996, the number of people living with diabetes in England has more than doubled to 3.2 million. [ii] It is estimated that 2.7 million people are currently diagnosed with diabetes and a further 500,000 people have the disease but do not know it.ii If trends continue, this number will rise to 4 million people by 2025.ii Poorly managed diabetes is the cause of 20,000 early deaths per year[iii] and diabetes accounts for around 10 percent of the annual NHS budget, or about £10 billion a year.ii

As documented in our health policy briefing which I helped to launch in Parliament earlier this year,[iv] Boehringer Ingelheim has been calling for all relevant diabetes guidelines to adopt an individualised approach to patient care that enables patient-centred prescribing in line with the principles of medicine optimisation. Previous draft guidelines have appeared to be heavily focussed on short-term cost efficiencies and failed to acknowledge the importance to patients of hypoglycaemic episodes and weight gain associated with type 2 diabetes.

I am pleased to see that the new NICE guideline does favour a more individualised approach to patient care. This will help to ensure that medicines are tailored to the individuals’ needs and circumstances, and that patients are offered the effective treatments they deserve.

What do you think about the new guideline on the management of type 2 diabetes? Please leave a comment here and tell me what you think.

Professor Klaus Dugi, Managing Director / Medical Director Boehringer Ingelheim UK & Ireland

 

[i] NICE (2015) Type 2 diabetes in adults: management

[ii] Diabetes UK (2014) State of The Nation: Challenges for 2015 and beyond

[iii] HSCIC (2012) National Diabetes Audit 2011-2012. Report 2:Complications and Mortality

[iv] Boehringer Ingelheim (2015) Health Policy Briefing

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

NICE and the Value of New Medicine

The great and good of the National Institute for Health and Care Excellence are today at their annual conference in Liverpool, so now feels like a good time to look at how the agency has developed since its launch in 1999 and its plans going forward.

NICE says its Health Technology Assessment (HTA) guidances and clinical guidelines help health and social care professionals deliver the best possible care based on the best available evidence and make the best use of their money in the NHS. However, the agency’s efforts to balance clinical and cost effectiveness and the methodology used in its HTAs regularly come under fire, especially by companies who have seen their treatments turned down for use on the National Health Service. One of the reasons for this is often that whilst NICE seek expert clinical and patient opinion, it can sometimes seem as if the patient’s voice is heard as a whisper compared to the weight of academic science taken in to consideration during the process. Continue reading NICE and the Value of New Medicine