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Lung disease patients failed by system

Charity calls for new taskforce

Jo Carlowe

Monday, 18 September 2017

Patients with incurable lung disease are being failed by a broken health system.

This is the message from the British Lung Foundation which is calling for the formation of a health taskforce to combat idiopathic pulmonary fibrosis (IPF). 

In a new report, published today, the BLF says the government needs to prioritise respiratory services and have a plan for all lung conditions.

The report warns that people dying of IPF are wasting “precious time” trying to find their way around an “ineffective and unnecessarily complicated healthcare system”.

A map for better care: making effective care pathways for people with interstitial lung disease (ILD), highlights the crises in ILD care.

The report focuses on the most common ILD, idiopathic pulmonary fibrosis (IPF). A condition, with an average life expectancy of just three years after diagnosis, which affects around 32,000 people in the UK.

According to the study, many patients claim their GPs do not understand their disease, with diagnosis sometimes delayed or dismissed. Moreover, drugs that could extend life are out of reach, due to “restrictive NICE guidelines”, the report states. 

A map for better care makes several recommendations. These include:

  • Ending the postcode lottery and fragmentation of services by establishing local ILD networks across the UK bringing together health care professionals, policy-makers, commissioners, charities and patients to improve local services.
  • Establishing a Taskforce for Lung Health in England and Scotland (following recent taskforces for cancer and mental health) to produce a five-year strategy for tackling lung disease.
  • Improving access to personalised treatments, diagnosis and support, including drugs, ILD specialist nurses, oxygen and palliative care.
  • Ensuring jointed up working between specialist centres, broader respiratory services, commissioners, patients and charities.
  • Ensuring patient-centred communication and care, defined as: affording people dignity, personalised care and supporting people to develop their own strengths.

Professor Toby Maher, British Lung Foundation chair in respiratory research, NIHR clinician scientist and consultant respiratory physician at the Royal Brompton Hospital, said: “As a consultant respiratory physician, I see how neglected problems in the healthcare system affect patients. It is frustrating that because of inflexible guidelines I am unable to offer over a third of my IPF patients life-prolonging drugs approved for use in their disease. Every day, I meet individuals, with limited life expectancy, who could have been referred, diagnosed and consequently treated much earlier if the system was more responsive to their needs.

“This systemic failure is well known. The British Lung Foundation’s Battle for Breath report last year revealed that the mortality rate for people with lung disease is roughly the same as it was 10 years ago.

“I sincerely hope policy-makers and healthcare professionals will now come together to put these recommendations into practice.”

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. 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 their life.

“Care and treatment could be better in many parts of the UK. We recognise that this failure is part of the long-term neglect of lung disease as a whole. Current and future lung health patients need NHS England and governments to establish a taskforce for lung health that will finally transform outcomes and care for these patients.”

Responding to the report, expert respiratory nurses at the Royal College of Nursing have echoed the charity’s call for a taskforce to improve understanding and treatment.

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. Only one in five people will live for more than five years after diagnosis, and it kills about 5,300 people each year in the UK - that’s 33% more than the number of people killed on Britain’s roads.

“Not enough is known about this devastating disease. 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. 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.

“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.”

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