The History of the

national Lung Cancer

Forum for nurses

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Recognising that lung cancer nurse posts had been created with very little strategic

planning or forethought into what the role required, a small cohort of Lung Cancer

Nurse Specialists employed throughout the United Kingdom got together with Lilly

Oncology to identify the needs of lung cancer nurses, with consideration to those

who worked in isolation, new to post and performing similar roles. The first National

meeting was held in Liverpool and had 40 attendees, these included, Tessa Fitzpatrick,

John McPhelim and Gill Walton, who all still support the Forum with as much enthusiasm

today as they had at the very beginning.

The 40 attendees unanimously agreed that a national body was needed to provide a voice on

strategic and clinical issues and to share best practice and that membership to the Forum be

open to any specialist nurse who spends more than 50% of their working week or clinical

activities in caring for patients with lung cancer patients. From this meeting the National Lung

Cancer Forum for Nurses was established in July 1999 and a committee formed. The first

constitution was developed with the objective that the NCFN was to provide a network and

support for nurses. This included education, professional development, audit and research.

Initially the Forum was free to join.

Over the years the Forum grew from strength to

strength. With increasing numbers of lung

cancer nurses joining there became a need for a

designated secretariat to support the committee

in the day to day running of the Forum. In 2004,

Dawn McKinley joined the committee as

secretariat and continued in this role until her

BTOG workload became too much for her to

support both groups. Red Hot Irons took

over the secretariat responsibilities in 2014.

Over the years the NLCFN has become

recognised as an influential voice of

Lung Cancer and Mesothelioma

management and the committee

members represent the Forum

on a wide variety of national and international groups (see opposite).

Along with other healthcare professionals, charities and interested

parties these strategic groups shape, improve and develop lung

cancer and mesothelioma care.

Following the Calman hine report in

1995 (Doh), which emphasised the potential value

of site-specific specialist nurses in improving the care

cancer patients received, the number of lung cancer nurses

increased significantly. This was further endorsed by the

improving outcomes in Lung Cancer document (nhse 1998),

which identified lung cancer nurses as a core member of the

multidisciplinary team.

Chairs of the committee

years Chair/s

1999 - 2000 Darinda Palmer (Claxton),

Claire Henry - co chairs

2001 - 2002 John McPhelim,

Andrew Wilson - co chairs

2003 Andrew Wilson

2004 - 2005 Tessa Fitzpatrick

2006 - 2008 Maria Guerin

2009 - 2010 Liz Darlison

2011 - 2013 John White

2014 - 2016 Diana Borthwick

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The AnnuAL ConFerenCe

In 1999 the first annual conference took place in Liverpool. The conference had six speakers, one

sponsor and a total of 40 nurses attended. This meeting was primarily a developmental meeting

where today's NLCFN was born.

The annual conference has grown year on year through learning, developments in lung cancer

and feedback from the delegates (see figure 1).

The committee starts planning the programme in January. They are guided by the feedback

received from the previous year’s conference, both positive and negative; to make sure the

conference is packed with educational, current and interesting topics. The committee approaches

key opinion leaders and experts as speakers.

Great care is taken to select a venue which is easily accessible, can accommodate the delegates

and plenary programme and exhibition and meets the requirements of corporate governance for

sponsors and exhibitors.

Figure 1: recorded Conference attendance

year speakers sponsors LCns

1999 6 1 40

2004 6 20 119

2005 6 22 109

2006 9 38 120

2007 10 39 120

2008 6 43 115

2009 14 55 109

year speakers sponsors LCns

2010 10 60 120

2011 16 60 113

2012 14 67 94

2013 14 60 124

2014 28 61 138

2015 26 94 138

• British Thoracic Oncology Group

• British Thoracic Society (BTS)

• BTS Lung Cancer/Mesothelioma Advisory Group

• Cancer Nursing Partnership

• Global Lung Cancer Coalition

• International Association for the Study of Lung

Cancer (IASLC)

• IASLC Allied Nursing and HCP Society

• International Thoracic Oncology Nursing Forum

• Lung Cancer Europe

• Macmillan ERG

• Mesothelioma UK

• National Cancer Registration and Analysis Service

• National Institute for Health and Care

Excellence

• National Lung cancer Audit

• NHS England CRG

• National Optimum Lung Cancer Pathways

(NOLCP)

• Roy Castle Lung Cancer Foundation

• Scottish Lung Cancer Nurse Specialist Forum

• United Kingdom Lung Cancer Coalition

• United Kingdom Oncology Nursing Service

• Welsh Lung Cancer Nurses Forum

organisations on which the nLCFn is represented

Data unavailable for 2000 - 2003

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edinburgh2003glasgow

2011

newcastle2009

harrogate2008

york2002

Liverpool1999

sheffield2000

nottingham2005

Birmingham2007 & 2016

Windsor2015

Brighton2006

London x 22010 & 2013

Bristol x 22001 & 2012

Chester x 22004 & 2014

Figure 2: national Lung Cancer Forum for nurses Conference Locations

History of NLCFN 2_Layout 1 02/11/2016 11:28 Page 5

The nLCFn AnnuAL AWArD

It was following one of the early conferences that the family of John

Lloyden, a patient who was sadly diagnosed and subsequently died of

lung cancer, fund raised to provide the first annual award. His grateful

family wanted to give back something to the lung cancer nurses who

supported them throughout their experience. They continued to fund raise till

2007 when the Forum took over the funding of the award and the name was

changed to the NLCFN Annual award.

The gooD PrACTiCe guiDe

In the first six years that the Forum was running it became evident that lung cancer nursing

was becoming more established. The nurses were developing services and projects that

promoted patient care. The Forum, as part of their ethos to share good practice, produced the

first Good Practice Guide. Two further Good Practice Guides have been published in 2009 and

the latest guide in 2014.

Integrated Lung Cancer Nursing: A Good Practice Guide (2004)

Leading the Way to an Ideal Lung Cancer Service (2009)

Excellence and Innovation in Specialist Lung Cancer Nursing Services (2014)

AnnuAL WorkshoP WiTh LiLLy onCoLogy

In 2004 Lilly Oncology approached the Forum committee and suggested developing a Workshop

for Lung Cancer nurses to develop a national project to further improve patient care. Initially

referred to as the ‘Lilly Workshop’ and with a name change in 2011 the success of this NLCFN

Annual Workshop speaks for itself.

The NLCFN Annual Workshop gives lung cancer nurses the opportunity to lead on a national

project and present this at the Annual Conference.

During the early years the Workshop attendees were split into two groups to produce

two smaller projects. Since 2008 however bigger projects were undertaken and in 2013

saw the first Workshop members’ efforts rewarded at the World Conference on Lung

Cancer in Australia when the ‘Guidance for the Supportive and Palliative Care of Lung

Cancer and Mesothelioma Patients and their Carers’ was accepted as a Poster

presentation.

History of NLCFN 2_Layout 1 02/11/2016 11:28 Page 6

Annual Workshops to date:

year Project Title/s

2004 1. Fail safe Chest X-Ray system: Patient Satisfaction Survey

2. Lung Tracker Job Description

2005 1. Template business case for securing the LCNS role

2. Telephone audit tool

2006 1. Nurse Led Follow Up Guidelines

2. Post operative patient survey

2007 1. Quality indicators; Prevention of hospital admissions audit

2. LCNS core Job Description

2008 A Good Practice Guide on the Prevention of Unplanned Hospital

Admissions

2009 Guideline for Lung Cancer Nurse Specialist’s to Communicate

Key MDT Decisions to Patients

2010 Palliative Radiotherapy guideline & Holistic Needs Assessment

Tool Solitary Pulmonary Nodule Guideline

2011 & 2012 Guidance for the Supportive and Palliative Care of Lung Cancer

and Mesothelioma Patients and their Carers

2013 Understanding and Reducing Admissions to A&E; The Role of the

Lung Cancer Nurse

2014 Improving Survivorship through pre-habilitation at the start of

the journey

2015 A Framework to support the Lung Cancer Nurse Specialist in the

development and evaluation of nurse-led clinics

2016 Can the early intervention of the Lung Cancer CNS improve the

patient experience, pathway, and outcomes for those admitted via

the emergency route on first presentation?

History of NLCFN 2_Layout 1 02/11/2016 11:28 Page 7

reseArCh inTeresT grouP

This was developed in 2009. The recognition that audit and research are fundamental in

developing lung cancer services resulted in the development of the NLCFN Research Interest

Group (RIG). In 2011 the NLCFN RIG introduced a small grants scheme which was launched to

support lung cancer nurses to undertake research projects. The Research Interest Group is led

by Professor Angela Tod from Sheffield Hallam University.

ThorACiC surgery grouP

In 2009 a further sub group of the NLCFN was developed to support those nurses who work in

the surgical field of lung cancer. To date, the thoracic surgery group (TSG) has produced essential

documents to improve the care of patients undergoing thoracic surgery including:

• Guideline to prepare and support patients undergoing lung resection

• Guideline for telephone follow up for patients undergoing thoracic surgery

• Patient information for enhanced recovery

More recently, the project work from the RIG and TSG groups have been put forward as

abstracts at the British Thoracic Onocology Group and poster presentations at the World

Conference on Lung Cancer. The groups have been instrumental in developing services, audit and

research within lung cancer nursing and made United Kingdom Lung Cancer Nurses gain global

recognition.

The neWsLeTTer

The newsletter is produced 3 times a year. The editor is one

of the committee members and NLCFN members are

encouraged to write news items on new developments,

educational items, feedback from attendance at national and

international conferences or general lung CNS new items.

The newsletter has grown from strength to strength and is

sent out via email to all members.

The WeBsiTe

The website was initially managed by a committee member.

It has educational materials and information and is an arena

for discussions. The general public can access the website’s

educational and information pages but NLCFN members have access to the other areas which

include details on conferences, member information and other educational materials. It is

currently managed by Red Hot Irons as part of their operations team role.

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History of NLCFN 2_Layout 1 02/11/2016 11:28 Page 8

The TrusTees AnD BeCoMing A ChAriTy

The organisation became a Charitable Incorporated Organisation (CIO) on

19 January 2015 giving the organisation more protection. The trustees meet twice

per year and occasionally by email/teleconference. The role of the trustees is that

of the governance of the organisation. The trustees of the charity are:

Lorraine Creech (Chair)

Alison Leary

John White

Dr Michael Peake

Diana Borthwick

The National Lung Cancer Forum for Nurses is a charitable

incorporated organisation - charity number 1160011

VAT Registration number: 237 6753 78

Correspondence Address: Unit 2 Warwick House, Fairview Industrial Estate,

Kingsbury Road, Curdworth, Warwickshire, B76 9EE

Telephone: 01675 477607 Email: info@nlfcn.net

Web: www.nlcfn.org.uk Fax: 01361 331811

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