Today’s parliamentary event (12th July 2016) was led by Action for Pulmonary Fibrosis (APF). It is a charity that has firmly established itself as ‘the Voice of the Patient’ – with a strong vision: a world in which everyone living with idiopathic pulmonary fibrosis (IPF) has a better future.
IPF is a devastating, terminal lung condition. Published research estimates that there are 15,000 people living with the disease in the in the UK, but it is possible that the true number is more than double this figure. Without accurate data about the number of people living with the disease, the health service cannot make adequate plans to support their needs both now and in the future.
At this event, APF highlighted the importance of an essential collection of data, to ensure that every patient with IPF receives the care they need. The charity also hopes to empower the NHS to plan effectively to meet the needs of these patients. The launch encouraged all health care disciplines to share their own experiences of caring for these exceptional patients. We reflected upon how we could enhance pathways of engagement – with one another, and our patients.
The reception was the launch for APF’s latest report, Fit for the future: Future-proofing care for patients with IPF. This report identifies the challenges the NHS faces in continuing to provide high-quality care for patients with IPF. It considers the challenges related financial pressures, complex patient needs and a rapidly ageing population. The launch considered the report’s findings and sought to build consensus about the actions required at every level of care to provide a ‘future-proof’ IPF patient experience.
It was a privilege to attend today, to represent my patients, team and the fellow committee members of ARNS. I had the invaluable opportunity to share patient experiences with members of the varied charities, MP’s and health professionals. It was not surprising to hear that we are all facing similar challenges – with resources and time. The new IPF report highlights the need to accurately identify (code) our patients to enable evidenced based applications for essential MDT resources. In particular, the lack of interstitial lung disease and oxygen nurses were identified, alongside the recommended pulmonary rehabilitation and the essential palliative care services.
On a personal vocational note I was able to share the challenges I am facing working with with the Indian and Asian communities of Leicester. The word ‘breathlessness’ does not exist in the Hindi, Punjabi or Guajarati languages. There is no direct translation. The closest translation means ‘death’ or ‘coffin’. It is from experience and working through translators, (at patient assessments), that I have acquired this understanding.
Breathlessness is one of the most common symptoms reported by patients with IPF. Currently, I have no written patient information to help aid the understanding of this frightening experience for those patients within the Asian and Indian communities, who do not speak English.
The basis of my thesis is to create a translated (Hindi and Guajarati) patient information leaflet to explain breathlessness, its cause and how it can be managed. As a leader, and experienced nurse, it is my belief that this information needs to be culturally sensitive to be successful and that the involvement of the Asian and Indian communities, as the main stakeholders, is integral for this success. It is my aim that the leaflet will enhance patient empowerment and that its utilisation, (alongside well translated patient assessments), will enhance patient self-management skills and improved health care outcomes.
Today MPs Stephen McPartland and Maggie Throup kindly attended the launch. They both committed to raising awareness and improving the quality of life of these patients. They spent time listening to our experiences and were genuinely engaged with our concerns. Stephen McPartland expressed how he would support the notion of asking NHS England to introduce the mandatory collection of data relating to the number of people diagnosed with IPF by a multi-disciplinary team. This the reports claims will enable clinicians and managers to plan the optimum services required for patients with IPF.
If we truly understand the scale of IPF and those suffering from this terminal disease, the NHS can ensure that the appropriate resources are assigned to their care, and that the provision of their complex health and social care is met – now and in the future.
Interstitial Lung Disease Nurse, Glenfield Hospital, Leicester.
ARNS (Association of Respiratory Nurse Specialists) Committee Member
Read the report ‘Future Proofing Care for patients with IPF’ here