Interstitial Lung Diseases Interdisciplinary Network
About Us
Mission Statement
Act
To act as a professional body that can influence and practice in ILD care throughout the UK
Support
To provide a supportive network for ILD network members to encourage information sharing, best practice and research collaboration
Influence
To influence improvement and developments in ILD care
Collaborate
To encourage collaboration with all interdisciplinary ILD specialists
Provide Opinion
To provide expert opinion to raise the standard and provision of ILD care
Promote
To support and promote equality in service provision for patients with ILD and their carers through the UK
Act
To act as a professional body that can influence and practice in ILD care throughout the UK
Support
To provide a supportive network for ILD network members to encourage information sharing, best practice and research collaboration
Influence
To influence improvement and developments in ILD care
Collaborate
To encourage collaboration with all interdisciplinary ILD specialists
Provide Opinion
To provide expert opinion to raise the standard and provision of ILD care
Promote
To support and promote equality in service provision for patients with ILD and their carers through the UK
Who we are
The Interstitial Lung Disease Interdisciplinary Network (ILD-IN) is a supportive and collaborative network for health professionals of all disciplines caring for people with interstitial lung disease (ILD).
Meet The ILD-IN committee
The committee oversees delivery of the objectives of the ILD-IN and acts on behalf of the membership. The committee consists of 13 members encompassing a broad professional spectrum incorporating specialist nurses, pharmacists, allied health professionals, doctors and researchers. Alongside interdisciplinary diversity, the committee has national and international representation.
The emeritus board are honorary members who advocate for the ILD-IN, provide strategic advice, identify and address risks and opportunities, share best practices and provide mentorship.
Click on each member to find out about their roles, interests and contact details.
Executive Board
Marium Naqvi
Organisation
Guy’s and St Thomas’ NHS Trust (GSTT)
Role
Co-Chair
Jenny Lynch-Wilson
Organisation
Hywel Dda University Health Board, West Wales
Role
Co-Chair
Janine Hood
Organisation
East Lancashire NHS Teaching Hospitals
Role
Secretariat
Joshua Burrough
Organisation
Wythenshawe Hospital
Role
Treasurer
Marium Naqvi
Research practitioner and highly specialist ILD pharmacistIn addition to her role as co-chair of the ILD-IN, Marium chairs the ILD Pharmacist Network. She is the project lead at GSTT for the NHS Digital funded implementation of a remote monitoring programme in patients with ILD. Research interests include the psychological impact of disease, adherence to therapy and the use of digital technology to improve patient outcomes and access to specialist care. To improve patient accessibility to specialist care, Marium is working across the London and the South East of England network to develop care pathways, guidelines for the management of ILD patients and provide education and training. Marium is an independent prescriber who manages a complex cohort of patients, including medication review, optimisation of therapies and managing the monitoring and supply of high risk and/or cost medicines.
Role:
Co-Chair
Organisation:
Hywel Dda University Health Board, West Wales
Jenny Lynch-Wilson
Lead ILD CNSJenny is Lead ILD CNS for Hywel Dda University Health Board, based in West Wales. She started her Respiratory career 25 years ago, initially on Respiratory wards/Cystic Fibrosis Unit in Llandough Hospital, and then as a COPD Nurse Specialist/oxygen nurse with CRRU. In 2013 she relocated with her husband and children to a small predominantly Welsh speaking village to live the ‘Good Life’ on a smallholding, now spending her spare time tending to their sheep/goats/ducks/geese/dogs!As there was no ILD service for patients within the Hywel Dda UHB , in 2017 she established the ILD CNS role, coordinated and presented at the regional ILD MDT in Cardiff to ensure the patients received accurate diagnosis and management. She now runs nurse led ILD clinics across the health board in Carmartheshire, Ceredigion and Pembrokeshire, and the ILD team has expanded to two nurses and two consultants. She has a passion for palliative care and the use of digital health platforms and tools such as PKB and telehealth for monitoring and improving patient care in the rural environment.
Role:
Secretariat
Organisation:
East Lancashire NHS Teaching Hospitals
Email:
janine.hood@elht.nhs.uk
Janine Hood
Respiratory Advanced PractitionerJanine has been a nurse for 33 years and has worked in the field of Respiratory Nursing for almost 25 years. During that time her passion for, and experience in Interstitial Lung Disease (ILD) care has grown. She completed the MSc in Advanced Clinical Practice in 2015 and is a full time Respiratory Advanced Practitioner for East Lancashire NHS Teaching Hospitals, based in Secondary Care. She intends to take early retirement and return on a part-time basis in May 2023. Since 2013 Janine has been improving services for ILD patients in East Lancashire; the local ILD service has grown from a local DGH with no subspecialty in ILD to now being part of the Lancashire & South Cumbria Regional ILD Network. This is a Specially Commissioned service to enable the MDT to take place to confirm diagnoses and then prescribe anti fibrotics without the need for local patients to travel long distances. She is the lead ILD Nurse for the Network. Janine’s daily work is very much outpatient focused with 3 clinics per week, 2 MDT’s and managerial responsibilities. She works within a very busy respiratory service and until recently was working in the pleural service and covid follow up clinics too. Janine has been a member of the ILD-IN committee for an extended period due to covid and currently holds the position of Secretariat and her tenure will be over in 2024.
Joshua Burrough
Respiratory PhysiologistJoshua is a Highly Specialised Clinical Scientist with a special interest in Interstitial Lung Disease. At Wythenshawe Hospital’s North West Lung Centre he works closely with one of the country’s biggest specialised ILD teams, performing diagnostic and disease monitoring assessments with our patients. He is a keen patient advocate as well as having a longstanding passion for clinical research both in the respiratory field and other areas of medicine. Alongside his clinical role and ILD-IN commitments, he has a particular interest in education and training development. He is an honorary lecturer and teaching lead for the national Practitioner and Scientist Training Programmes and as part of his commitment to clinical excellence, he has recently completed the Mary Seacole Leadership Programme with the NHS Academy. He joined the ILD-IN with the hope of providing scientific input to the network as we help to shape and influence the direction of ILD care within the UK. The role of clinical scientists is often greatly under recognised and he hopes to raise awareness of the key part we play in the ILD patient pathway. He is originally from Newcastle and the Geordie accent seems to be his most widely recognised trait (aside from the mighty Newcastle United Football Club).
Committee Members
Maria Koulopoulou
Organisation
King’s College Hospital
Role
Specialist Respiratory Physiotherapist
Cátia Paixão
Role
Physiotherapist & Researcher
Doria Barbonchielli
Role
Lead ILD Specialist Nurse
Katie Zakis
Organisation
Manchester Foundation Trust
Carmel Mcinerney
Organisation
University Hospital Limerick Group
Sarah Mulholland
Organisation
North Bristol NHS Trust
Rosie Boorsma
Organisation
East Sussex Healthcare NHS Trust
Laura Fabbri
Organisation
Margaret Turner Warwick Centre for Fibrosing Lung Disease
Kerry Mills
Organisation
Hereford Medical Group
Role:
Specialist Respiratory Physiotherapist
Organisation:
King’s College Hospital
Maria Koulopoulou
Highly specialist respiratory physiotherapistMaria is an experienced clinical-academic respiratory physiotherapist with an interest in pulmonary rehabilitation and management of chronic respiratory conditions; she has a particular interest in interstitial lung diseases, and she is keen in promoting and advocating for a tailored-based, patient focused ILD service model pathway, including pulmonary rehabilitation and education for patients with ILD diagnosis.Maria is the clinical lead of the pulmonary rehabilitation service at King’s College Hospital - a role, which inspired her to value a great deal specialist clinical leadership skills, such as service effectiveness, patient-focused care, and quality improvement strategies. Maria is a confident clinical lead with a wealth of knowledge, experience and skills in directing, shaping and developing a service both from a clinical and strategic planning perspective. She is keen is utilising these skills and knowledge to contribute towards service and quality improvement implementations that can benefit the ILD treatment pathway. Having led the King’s PR service during the Covid-19 pandemic, she has appreciated the value of technology in supporting clinical services; a careful assessment and evaluation framework is required to judge the clinical and cost effectiveness value of any technological implementation vs or in addition to traditional service pathways.Maria, has successfully completed Master- level modules at UCL in the field of respiratory and cardiovascular medicine, and in 2015 she completed an MSc by research course at St George’s university of London (an RCT investigating the effects of inspiratory muscle training in ILD). She is an active member of the ERS, ILD-N and BTS; she is a peer reviewer in respiratory journals in her field of expertise, and has presented her work in national and international conferences.
Role:
Physiotherapist & Researcher
Cátia Paixão
Cátia Paixão is a physiotherapist who holds a Ph.D. in Rehabilitation Sciences from the University of Aveiro (Portugal). During her Ph.D., Paixão conducted a home-based physical activity programme for people with interstitial lung diseases (ILD). During this journey, she got passionate about the ILD world. Her clinical and research interests include the study of interstitial lung diseases, non-pharmacological interventions, such as pulmonary rehabilitation, physical activity and self-management as well as outcome measures.Currently, she is working as an Assistant Professor at the School of Health of Piaget of Viseu (Portugal) and at the School of Health of the Polytechnic University of Coimbra (Portugal). Paixão is also a research member of the Lab3R-Respiratory Research and Rehabilitation Laboratory and the Institute of Biomedicine (iBiMED) of the University of Aveiro (Portugal) and a member of the European Respiratory Society, American Thoracic Society and the Portuguese Pulmonology Society.
Role:
Lead ILD Specialist Nurse
Doria Barbonchielli
Interstitial Lung Disease (ILD)Doria serves as the Lead ILD Specialist Nurse for both University Hospital of Llandough and University Hospital of Wales. Additionally, she holds the role of Research Manager.Doria obtained her MSc in Advanced Practice and is a Prescriber. She is an integral part of the ILD MDT that serves all of Wales' NHS.Doria's daily focus revolves around her role as a Nurse Lead in ILD clinic, where she acts as an independent prescriber managing a complex cohort of patients.She also serves as a Research Manager and Sub-investigator, actively contributing to the advancement of knowledge and treatments in the ILD field. Her commitment lies in staying at the forefront of research and innovation to improve outcomes for her patients.Doria's nursing journey began in the dynamic environments of A&E and Intensive Care in both Italy and Cardiff, where she refined her clinical skills and developed a strong passion for respiratory care.Transitioning into the specialised field of ILD, she has dedicated herself to providing compassionate and comprehensive care to patients facing these complex conditions.Outside of her professional endeavors, Doria is multilingual, fluent in Italian and Iranian, enabling her to effectively communicate and connect with patients from diverse backgrounds
Organisation:
Manchester Foundation Trust
Katie Zakis
ILD Specialist NurseKatie works in the specialist ILD service at Wythenshawe Hospital, part of the Manchester University Foundation Trust, which is among the largest ILD services in the UK, serving Greater Manchester and Cheshire. Her daily role is mostly clinically focussed, seeing new and follow-up patients in clinic, supporting a network of nursing teams and developing and expanding the nursing service which leads on antifibrotic prescribing and palliative care. She also provides education to respiratory colleagues across primary and secondary care.Katie is a non-medical prescriber, and is working towards an MSc in Respiratory Practice. She has presented research nationally and internationally about innovations in ILD nursing. She has a special interest in palliative care, and is a member of the UK Palliative Care ILD Group (UP-ILD).
Organisation:
University Hospital Limerick Group
Email:
carmel.mcinerney@hse.ie
Carmel Mcinerney
Respiratory Advanced Nurse PractitionerCarmel is the Respiratory Advanced Nurse Practitioner (RANP) within the University Hospital Limerick Group (UHLG), Ennis Hospital, Ennis, Co Clare, Ireland. She worked as a CNS in the Respiratory Department at this hospital since 2006 initially seeing general respiratory patients. This was the first respiratory CNS post in the hospital so she set up the service for Non-Invasive Ventilation, COPD, Asthma and Interstitial Lung Disease. The respiratory service has grown over the years and Carmel manages a caseload of respiratory patients with symptoms suggestive of Asthma, COPD and ILD in her role. Running three nurse –led clinics a week seeing new and review patients. Clinical work – Carmel originally qualified as an RGN/RCN in Temple Street Paediatric Hospital and St Vincent’s Hospital Dublin. She then went on to complete her Midwifery Studies in St Munchins Maternity Hospital, Limerick. From an education aspect she has undertaken her Post Graduate Diploma in Respiratory Care, her Masters in Advanced Practice Nursing where she got an Honours Degree, her Nurse Prescribing in Medicinal Products and her nurse prescribing of medicinal Ionising Radiation.Patients are referred to Carmel through the respiratory service and general practitioners that may have asthma or COPD and all diagnosed ILD patients. Limerick is one of the six expert ILD centres in Ireland and Carmel has setup a satellite clinic for the ILD patients in the Clare area. She manages this service with her respiratory nurse colleagues in Limerick seeing a large number of patients monthly. Patients are pleased to have good links with the respiratory nurse team including pulmonary rehabilitation and oxygen services.Public Service: Carmel is a member of ANAIL (the Irish Respiratory Nurse Group) She is an active member of the ANP national group also.Teaching – Carmel provides ILD support for respiratory nurses and health care professionals within the UHLG through local training sessions. Carmel has spoken at many national conferences on ILD and the impact of ILD on patients. She spoke recently at the patient information day organised by Irish Lung Foundation Association (ILFA) talking to patients about symptom management.Carmel has recently been appointed as adjunct clinical lecturer at the University of Limerick which is the academic partner of UHLG, providing education to the undergraduate nursing programme and the Masters Programme.
Organisation:
North Bristol NHS Trust
Email:
sarah.mulholland@nbt.nhs.uk
Sarah Mulholland
Lead respiratory pharmacistSarah joined the Trust in 2012 and the Bristol ILD (BILD) team in 2015. Sarah supports a team of nurses, pharmacists and pharmacy technicians to provide initiation, monitoring and supply of antifibrotics and, more recently, immunosuppressive medications. Sarah is committed to delivering compassionate care, ensuring patient safety and optimising treatment outcomes for patients with ILD. Sarah welcomes collaboration, questions and opportunities to make a positive impact in the management of ILD.
Organisation:
East Sussex Healthcare NHS Trust
Email:
rosemary.boorsma1@nhs.net
Rosie Boorsma
Senior Respiratory Specialist Nurse (ILD Lead)Rosie is a community respiratory specialist nurse. She has worked for the last 6 years prescribing oxygen and assessing patients with a variety of respiratory diseases. As the daughter of someone with ILD, Rosie was very passionate about filling the gap in support for patients with ILD. She established two support groups in East Sussex and is now part of establishing a new ILD service for the area along the Sussex coast between Seaford and Rye. She has created a Pulmonary Fibrosis handbook for patients and joined the ILD-IN to continue the development of care for this group of patients.
Organisation:
Margaret Turner Warwick Centre for Fibrosing Lung Disease
Email:
l.fabbri@imperial.ac.uk
Laura Fabbri
Clinical research fellowLaura is a respiratory doctor, she completed her medical training at the University of Perugia (IT) with postgraduate training at the University of Modena and Reggio Emilia (IT). She is a PhD student at the Imperial College London and runs ILD clinics at the Royal Brompton Hospital. Through a patient-centred approach, her research focuses on interstitial lung diseases, particularly pulmonary fibrosis. Laura advocates for patient and public involvement in research and aims to increase awareness of pulmonary fibrosis and improve early disease diagnosis.
Organisation:
Hereford Medical Group
Email:
Kerry.mills4@nhs.net
Kerry Mills
Lead Respiratory Nurse and Co Clinical DirectorKerry currently works in Primary Care as lead Respiratory Nurse and Co Clinical Director at Hereford Medical Group, Primary Care Network, which delivers services for 50,000 patients in Hereford City. Kerry has been involved in respiratory care for 25 years and prior to working in the GP surgery was lead CNS for Respiratory for the acute trust, with a specific interest in ILD. Was involved with implementing the collaboration with tertiary colleagues in Birmingham to ensure patients received care closer to home. Kerry remains very passionate about raising the profile of ILD and early diagnosis in clinical practice and continues to deliver education and training for local and national colleagues to keep ILD on the agenda.
Emeritus Board
Geeta Vekaria
Senior Interstitial Lung Disease Clinical Nurse Specialist, Imperial College Healthcare NHS Foundation TrustILD IN Emeritus Board Member: joined April 2024Ex-Committer member: joined ILD IN Jan 2019 and has successfully completed roles as a Treasurer, Secretary and Co-Chair 2021-2023.Geeta is a highly motivated Interstitial Lung Disease (ILD) Senior Clinical Nurse specialist (CNS) at Imperial College Healthcare NHS Trust, since January 2021. She has passion for all things ILD and supporting patients/colleagues by working collaboratively. She demonstrates a high degree of autonomy, complexity, decision making skills, analysis and synthesis of complex problems and provides innovative solutions. She is a Non-medical Independent prescriber and has accreditation for Advance clinical Practice e-portfolio route.She has previously worked in a dual role; ILD CNS and Clinical Research Nurse (CRN) working at University College London Hospital NHS Foundation Trust. She’s fortunate for career pathway to have clinical experience and research skills intertwined. She undertook an empirical study for her dissertation in IPF for her MSc Advance Practice pathway at Kings College London University. She started her career in Respiratory over 20 years which involved COPD reviews for GP practices across London followed by working with Air products as a Clinic Nurse Advisor for Home Oxygen Service provider. In her Community Respiratory Nurse post with Waltham Forest Respiratory Services she managed COPD, Asthma and Oxygen patients in clinics. She recently also worked at National Service for Health Improvements as Respiratory Nurse Specialist advisor supporting Asthma and COPD patients remotely.
Helen Morris
Wythenshawe hospital, Manchester, UKHelen Morris is Lead Interstitial Lung Disease specialist nurse of the Manchester ILD service at Wythenshawe hospital and has led the ILD Specialist Nursing service from 2013. The nursing service won the Nursing Times respiratory team award in 2018.Her role includes the clinical assessment of new ILD patients in a day-case environment, counselling new patients’ choice of medication and providing appropriate support and monitoring. She provides a satellite ILD nurse-led clinic in the North of Manchester linking secondary and tertiary care. She developed and supports a shared care network of Specialist nurses and Advanced practitioners to provide patients with pulmonary fibrosis care closer to home.She has an extensive respiratory background working as a sister on a respiratory ward, a COPD specialist nurse in the community providing hospital at home, community response and delivering pulmonary rehabilitation. She has worked in a community matron service and was involved in developing this service in Central Manchester.Helen has a degree in Nursing practise and an MSc in Respiratory practise. Former chair of the ILD-IN committee, current ILD lead for the association of respiratory nurses and nurse member of the BTS lung registry steering group. She has spoken at conferences across the UK and in Europe and provided ILD education locally, regionally, nationally and into Europe and presented posters at ERS, ILD IN and ARNS.
Sandra Olive
Consultant Nurse, Respiratory Medicine, in a large NHS teaching hospital, Norfolk & Norwich University Hospital (NNUH), which provides elective and non-elective care for a population of approximately 1,000,000 across a mixed, largely rural region.Subspecialty clinical interests in interstitial lung disease and oxygen management, with leadership roles in the Specialist ILD Service, quality improvement and clinical education. Works with UK ILD charities and other partnership organisations to advocate for patients and carers living with ILD. Interested in collaborative working with related specialties, including palliative care and community, to improve access to the appropriate clinical care and support.Research interests include patient and carer perspectives and supportive care in the context of progressive lung disease.Active member of the British Thoracic Society and currently a member of the BTS Emergency Oxygen Guideline Group. Member of European Respiratory Society, ILD-IN and ARNS.
Professor Anne-Marie Russell
My primary research interests are in patient centred mixed methods focussed on symptom experiences, supported self-management approaches, quality of life and patient reported measures in ILD.I commenced an appointment at the university of Birmingham / UK having on 1st January 2024 as the Jenny Jones chair of nursing science. A clinical academic, I work with the interdisciplinary team at the Birmingham Regional Interstitial Lung Disease Service and am developing links with rheumatologists within the region. I collaborate nationally and internationally with clinical academics in ILD contributing to international guidelines through the American Thoracic and European Respiratory societies and publish predominantly in open access peer review journals working with patient partners in research. I am a scientific advisory board member of the European Pulmonary fibrosis Foundation and Emeritus board member of the ILD Interdisciplinary Network.
Geraldine Burge
Geraldine Burge retired ILD specialist nurse at University of Birmingham NHS Trust of 43 years’ service: trained at Westminster hospital before starting postgraduate courses in cardio thoracic medicine, Jungian psychology, palliative care and teaching. Geraldine has worked as a Research nurse in interstitial lung disease since 2002 completing studies of Interferon gamma, Pirfenidone and Nintedanib before becoming one of the first NHS ILD clinical nurse specialists. She worked for NICE 2009, scoping exercise for IPF, 2011-2013 NICE IPF Guideline Development Group and again reviewing the guidance 2016. She runs the local ILD patient support group and works as a volunteer for Action for Pulmonary Fibrosis Charity, and British Lung Foundation Health care professional. She has been the Chairman of the nursing group of the European Respiratory Society Assembly 9.03 (1997-1999.), whilst working with the ATS nursing group reviewing abstracts for their congresses. Geraldine also worked as secretary to Assembly 9 (2009-2012) sitting in the European School of Respiratory Medicine; and work on ERS Research Fellowship grant committee. She has sat on numerous Advisory boards for ILD. Geraldine was a founding director and chairman of the Interstitial lung Disease Interdisciplinary network ILD-INN.2015-2018 and currently the West Midlands regional ILD-INN lead.Lastly Geraldine continues to care passionately about improving the lives of those with ILD but supporting nurses and health care professionals as she is no longer patient facing. The essence of nursing is not in the doing, it is about being open to whatever arises and through care and compassion that we afford dignity, respect, and value to all.
Where we began
The ILD-IN developed over several years, starting as an informal group of specialist nurses who provided peer support, ad hoc educational study days and shadowing opportunities for newly appointed nurses working in ILD care. In 2015 the group formally launched the ILD-IN with a committee of interdisciplinary healthcare professional to consolidate the principles of ILD care management.
INTERSTITIAL LUNG DISEASE – INTERDISCIPLINARY NETWORK LIMITED was limited by guarantee in March 2016. This was, in part, thanks to our founding sponsors Action for Pulmonary Fibrosis, Boehringer Ingelheim, Codel Software, and Roche Pharmaceuticals.
Future Evolution
The ILD-IN is committed to supporting the needs of ILD professionals in a landscape of evolving clinical practice. As the demands on ILD services continue to outgrow the resources at our disposal, we offer a collaborative foundation for discussion amongst those on the frontline of ILD care. Through our own initiatives and collaboration with key stake holders we help to shape the narrative around the future of ILD care nationally.
We listen to our members. Join us today to be part of the future of the ILD-IN.
What's Been Happening
Take a look at our social wall to stay up-to-date on the latest events and news in the industry.
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We’re working on something REALLY exciting with the incredible Chef Alain Roux and @PFTrust. Honoured to be invited to the home of the late Michel Roux and to experience his legacy through the eyes of his son ♥️
Delighted to share our review of recent advances in antifibrotic therapy in progressive pulmonary fibrosis #PPF has been published @ILDIPFDoc_NI
Nominations for awards are open - nominate a colleague or your healthcare professional!
Register now 👇🏻
For many years there has been little interest and research into sarcoidosis by pharmaceutical companies. That is now changing! There are now four clinical trials specifically designed for sarcoidosis actively recruiting in the UK at the moment: https://buff.ly/46H1hBA
Reminder bursary applications to attend the ILD-IN annual conference are open! Deadline is 19th July at 12pm. Apply now!
Bursary applications are now open to all members. This includes registration, one-night accommodation and admission to the gala dinner. Apply before 19th July at 12pm!
Join us on this webinar. Special collaboration Southeast Asia and global speakers who will talk about ILD and other respiratory diseases.
@Katerin27451987
@ILDIPFDoc_NI
@PilarRiveraOrt1
@ACorlateanu @sialengcheng @atit_pd @ers_ild
📣ILD-IN AWARD NOMINATIONS📣
We are delighted to be hosting the ILD-IN Awards sponsored by @rotherhamresp and supported by @ActionPFcharity and @patientMpower. There are 3 categories: 1. Patient nominated 2. Rising Star 3. Innovation. Get nominating!!