The British Lung Foundation warned that patients with the incurable lung disease were being failed by what it called a broken healthcare system, including a lack of specialist nursing support.
“We need more specialist nurses with ILD training and expertise”
British Lung Foundation
It has published a new report covering what it called the “current crises” in ILD care and focusing on the most common form, idiopathic pulmonary fibrosis (IPF).
It highlighted that the National Institute for Health and Care Excellence’s IPF quality standards stated that all “people with IPF should have an ILD specialist nurse available to them”.
“ILD nurses play an essential role in helping people co-ordinate their care and understand their condition,” stated the report, which was published today.
It cited a study of 50 ILD patients who all considered that the specialist nursing service was very important to them, and 90% wanted to be seen at least every three months.
“People with IPF are being forced to spend their remaining time being shunted from service to service”
Yet, the charity said its own 2015 survey findings showed only 39% of people with IPF reported they had frequent contact with an ILD nurse and 36% of people said they had no access at all.
“Our 2015 survey showed that there are not enough ILD nurses to meet demand. For instance, in Northern Ireland there is only one nurse who is classed as an ILD specialist,” noted the report.
“We need more specialist nurses with ILD training and expertise,” it said. “This will improve the provision of information and support available to families and carers, particularly in managing acute episodes and palliative care.”
It highlighted that nurses who had contributed evidence to the report also felt that more needed to be done to make the ILD specialism an attractive career path.
“This could be done through tailored training programmes and incentives in regions that need more specialists,” said the report.
It acknowledged that ILDF was a “challenging field” requiring a range of knowledge and communication skills.
“ILD patients often have complex needs and co-morbidities, meaning nurses require tailored and extensive training to enable them to deliver optimal care,” it said.
“The number of people dying from IPF has increased six-fold in the last 40 years”
The charity also highlighted that there was currently no standard definition of an “ILD specialist nurse”, which often led to “considerable variation for both practitioners and patients across the UK”.
“National standards would help providers and networks provide effective training and resources,” said the report. “Additionally, it would help standardise the role across regions and workplaces.
“Standards should be written that embed best practice and ensure the roles are designed to work in the best interest of patients. It would also help create a clear career pathway,” the report said.
It called on the government to support existing ILD nurse networks across the UK with a focus on more training, write national standards and a career pathway for the role of an ILD specialist nurse and carry out research to establish an optimum ratio of patients to ILD specialist nurses.
Overall, the charity said its new report contained a comprehensive guide on how to dramatically improve access to services, treatment and support for patients with life-limiting lung diseases.
The report warned that patients who were dying were wasting “precious time” finding their way around an “ineffective and unnecessarily complicated” healthcare system.
Nurses urged to help find undiagnosed cases of lung disease
Patients with IPF have an average life expectancy of just three years after diagnosis. The condition affects around 32,000 people in the UK.
According to the report, many patients said GPs did not understand their disease, they had not had any clear information to help them and that diagnosis was delayed and, in some cases, dismissed.
Crucially, access to vital treatments was limited, including drugs that could extend their life expectancy, because of restrictive NICE guidelines, said the report.
The charity called for an end to a “postcode lottery” in IPF care, as well as fragmentation of services, by establishing local ILD networks across the UK.
These networks should bring together healthcare professionals, policy-makers, commissioners, charities and patients to improve local services, it said.
It also called for improved access to vital personalised treatments, diagnosis and support, including pulmonary rehabilitation, palliative care, drugs and oxygen – as well as specialist nurses.
Likewise, it said there was a need to ensure patient-centred communication and care as delivered, with dignity, personalised care and support for people to develop their own strengths.
In addition, the charity cited the need for better joined up working between services, commissioners and charities, and that an expert taskforce should be set up to develop a five-year strategy for tackling lung disease in England and Scotland.
Dr Penny Woods, chief executive of the British Lung Foundation, said: “We hear far too often from ILD patients how they struggle to get a diagnosis, as well as access to treatment and support.”
She said: “People with IPF are being forced to spend their remaining time being shunted from service to service and fighting for treatments that could help manage their condition or even prolong life.”
“Care and treatment could be better in many parts of the UK,” she said, but added that the charity recognised that this was partly due to the “long-term neglect of lung disease as a whole”.
Charity calls for end to ‘systemic neglect’ of lung disease
Dr Woods said NHS England and the UK governments needed to establish a taskforce for lung health “that will finally transform outcomes and care for these patients”.
The Royal College of Nursing backed the findings and recommendations in the charity’s report. Wendy Preston, head of nursing practice at the RCN and chair of the Association of Respiratory Nurse Specialists, said: “Prognosis for people living with IPF is worse than for many cancers.
“The number of people dying from IPF has increased six-fold in the last 40 years, and we have little understanding as to the reasons,” she said, noting that not enough was known about the disease.
“And there is no known cure – current treatment can only slow the scarring on the lungs and it is essential that holistic care is available that includes timely palliative care,” said Ms Preston.
“It’s clear more needs to be done in the fight against IPF, and we support the BLF’s call for a lung health taskforce to improve the outlook for patients,” she added.