Committee BlogsArticles from the ARNS Committee
July saw the inaugural meeting of the Respiratory Nurse Research Consortium (RNRC) in Manchester. The consortium is a collaborative venture between ARNS (Association of Respiratory Nurse Specialists) and Edge Hill University, with an overall aim to empower respiratory nurses to speak with a single voice on research issues, enabling an influencing, lobbying, and consultative forum. With a dearth of respiratory nurse led research and no clear respiratory nurse research strategy, the RNRC aims to mobilise and aggregate the collective experience, knowledge, and capacity for respiratory care research nationally. Anecdotal evidence and consensus opinion amongst those who care for respiratory patients agree that the current clinical situation for the majority of nurses does not facilitate the participation in, or undertaking of, high quality research (Sherrington, 2011). This is often reflected in the lack of quality nurse-led research and it’s dissemination at major conferences. Respiratory nurses are the ideal leaders of research which could potentially improve morbidity and mortality for respiratory patients, but a lack of co-ordination and common agendas has negated against taking this forward in the past. This situation has several facets:
- Dearth of nurse-led, nurse-focused published research.
- An uncoordinated approach exists resulting in potentially wasted and duplicated effort, and poor allocation of time and resources.
- Most research results from academic study – usually small scale, local and often not disseminated/published appropriately.
- Nurses have the relevant research questions and clinical expertise, but lack resources – mostly protected time and the necessary research skills – to conduct quality research.
The RNRC aims to facilitate nurses to lead on research which is relevant to them and their patients, through co-ordination, mentorship, and collaboration.
With representation from across the UK the first meeting brought together senior respiratory nurse clinicians and academics to scope the vision and remit of the RNRC. Research support mechanisms and expertise are currently not easy to access; the research consortium will endeavour to change this by providing a hub of research expertise and resource which is readily available to respiratory nurses and potential collaborators. Building on the findings from the ongoing Delphi survey on respiratory nurse research priorities, the aim of the consortium is to facilitate collaborative research, led by nurses, which will guide, inform, and progress the care delivered to respiratory patients across the UK. For further information, or if you would like to become involved with the work of the RNRC please contact Dr Carol Kelly at firstname.lastname@example.org
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
On being asked to write a blog on what impact the award has had well… the first thought that came to my mind was the invaluable recognition from peers.
General practice nursing is unique: roles and scope of practice vary and although practice nursing is the most rewarding clinical area that I have ever experienced, the downside is that it can also be an isolating and lonely area to work in and professionally develop. For example, I am the only respiratory nurse in the practice and have very limited opportunities to share ideas and network amongst like-minded enthusiastic practice nurse colleagues!
I experienced long winded and at times torturous experiences throughout my professional doctorate which has, in fact, taken almost three years longer to complete than originally planned. At times, I questioned whether my research project, which centred on researching the barriers to accurate spirometry assessment and interpretation for the chronic disease management of COPD, was really worth it and whether or not it would have been easier to throw the towel in and look for other opportunities to develop my remit within general practice nursing.
When the awards were announced, I applied as ARNS had supported me with a bursary towards my course fees and I wanted to give something back to demonstrate that I had used the generous bursary to continue with my studies. I was overwhelmed when I was informed that I had been shortlisted for the award, and was given a much needed boost in the fact that my application had been read and considered worthy for shortlisting by peers.
Being shortlisted was a turning point and gave me the motivation to continue with my research. It’s subsequently difficult to describe just how much it meant to me on winning the award. Having worked as an isolated practitioner for so many years, and being one of few general practice nurses in Wales who have a keen respiratory interest, the feeling that my peers considered my research worthy, of interest to others, and relevant in furthering knowledge in the chronic disease management of COPD was brilliant. I am passionate in the care of patients with COPD and to have my research publically acknowledged by peers made me realise that I could effect change in the long term management of COPD services within general practice.
Since winning the award, my increased confidence in clinical practice has continued. I have a raised profile locally and contribute to the local improvement of respiratory services by participating and teaching within local respiratory groups. I am preparing to publish my research findings and am planning on cascading the findings throughout the locality and Wales; my long term aim being to improve spirometry within general practice and in the long term improve the chronic disease management of patients with COPD. I feel my profile has also been raised within ARNS and I am keen to continue supporting the association and representing the voice of general practice nurses in the future.
Winner – ARNS Respiratory Rising Star 2015
Visit to Parliament for the British Lung Foundation Parliamentary Launch of Tackling emergency presentation of lung cancer: An expert working group report and recommendations.
On the 3rd November 2015 I was lucky enough to be invited by the British Lung foundation to represent the Association of Respiratory Nurse Specialists (ARNS) to hear about their key recommendations from the working group to tackle the poor lung cancer patient outcomes in the UK.
As a specialist respiratory nurse it is important that this work is recognised, promoted and supported to ensure that all lung diseases are highlighted, whilst I am not a Lung cancer CNS it’s important that respiratory care is to recognise and remains in the spotlight within parliament to improve outcomes for all our patients.
What I was unaware of, before I attended the launch was that, compared to the European average, cancer survival in England is low. Lung cancer is the UK’s biggest cancer killer, accounting for more than 1 in 5 of all cancer deaths. Dr Penny Woods, Chief Executive of the British Lung Foundation states that “despite claiming so many lives, lung cancer has not been given the prioritisation of other common cancers such as breast and prostate, something which is necessary if we are to tackle to poor patient outcomes that make the UK one of the worst places to have lung cancer in Europe, if not the world”. Dr Tom Newsom-Davis, Chair of the Expert Lung Cancer Working Group, and Jane Ellison MP, Parliamentary Under Secretary of State for Public Health were among those presenting the recommendations and why they are essential.
In 2013, around 34% of all lung cancer patients were diagnosed via emergency routes, compared with 20% of other cancers. This was surprising to me as someone who does not work in this field, I have always assumed that patients were identified and treated quickly and appropriately. This is not what is happening. Many patients are going to their GPs too late when their persistent cough is troubling them. The GPs are finding it hard to communicate with secondary care and to also get access to CT scans.
The key recommendations aimed to improve this are:
Recommendation 1. Funding for a National campaign (such as Be Clear on Cancer, Detect Cancer Early or Be Cancer Aware) be maintained or increased, in order to raise awareness of the signs and symptoms of lung cancer
Recommendation 2. A commitment be made to rapid adoption of a targeted evidenced-based lung cancer screening programme, as deemed effective by the UK National Screening Committee, in order to reduce the number of lung cancer patients diagnosed late and via emergency routes.
Recommendation 3. Lung cancer risk assessment/clinical decision support tools be tested and the most effective be made available in all primary care practices. Appropriate support be provided to enable GPs to utilise these tools at practice level and, where possible, a scaled-up version should be made available at CCG level.
Recommendation 4. If proven effective and feasible, rapid access outpatient pathways should be introduced to prevent unnecessary emergency admissions.
Recommendation 5. A timed pathway for patients with suspected lung cancer admitted as an emergency, from time of initial presentation. This would include:
• Seeing a member of the Acute Oncology Service of Lung Team within 24 hours
• A CT scan conducted within 48 hours
• Review by the lung multi-disciplinary team (MDT) within a week
• Being seen by a member of the lung MDT within a week
Recommendation 6. GPs be able to make direct access referrals for CT scans for patients with suspected lung cancer
Recommendation 7. All chest X-Rays and CT scans be formally reported within four days. The individual requesting the x-ray must acknowledge and act upon the result. Local mechanisms should be in place to ensure scans which suggest a possible diagnosis of lung cancer trigger referral to a Specialist Rapid Access Lung Cancer Clinic.
Recommendation 8. Direct telephone or email access between GP practise and secondary care consultants to speed discussion about high risk cases.
Recommendation 9. Centralised systems be set up, either at GP federation, CCG or regional levels, in order to ensure data can be shared.
Recommendation 10. A Clinical Nurse Specialist (CNS) be available to all patients undergoing investigation for suspected lung cancer
Recommendation 11. All patients diagnosed in an emergency setting be seen within 24 hours by an Acute Oncology Nurse, who then acts as the patients key worker until they are safely handed over to the appropriate CNS.
As Dr Penny Woods states, ‘it is time for lung cancer patients to be prioritised and for the stigma associate with the disease to be overcome’.
Improved communication, access to services and referral pathways and improved links to Clinical Nurse Specialists will go a long way to improving the outcomes for Lung cancer patients in the UK.
As a specialist nurse I found this key recommendation to be the most powerful for me. We know that CNS’s make a significant difference to the care and lives of our patients and it was great to see that recognised in this document and that the need for more specialist nurses in this area is vital.