In the UK, 1 in 10 people suffer from breathlessness.
Despite this, limited treatment options exist for breathlessness and currently, very little research into it.
Background + aims
To address the urgent need for a deeper understanding of and research into breathlessness, we've have partnered with the James Lind Alliance (JLA) to complete a Priority Setting Partnership (PSP). This partnership brings together people that experience breathlessness and the healthcare professionals that care for them to contribute their ideas to shape the direction of future research.
The ultimate goal of this PSP is to identify, prioritise and publicise the 'Top 10' unanswered research questions from the people affected by breathlessness, to drive research funding where it matters most.
What's the timeline?
Work on this PSP began in May 2023 and is expected to continue until at least December 2024. The first survey will be launched in November and will be live for three months, with the second survey launched July 2024.
The resulting Top 10 priorities list will be finalised in September 2024 and published by December 2024.
Outreach for survey two includes the use of the £10 incentive voucher which will be offered to the groups we find hardest to reach to boost response rate. This form of advertising will be used to reach under 30s and people from minority ethnic groups.
Administration
This project is being led by Dr Erika Kennington, Head of Research and Innovation at Asthma + Lung UK, supported by Priyanka Punja, Patient Partnership Coordinator at Asthma + Lung UK and guided by Suzannah Kinsella, Adviser for the James Lind Alliance.
Dr Erika Kennington
PSP lead responsible for the organisation and management of the project.
Priyanka Punja
PSP coordinator responsible for project support and administration.
Suzannah Kinsella
As a facilitator and researcher, Suzannah has involved the public and stakeholders in health and social care policy and service discussions. She has worked with complex and sensitive issues such as genetic technologies, organ donation, changes to health services and use of health data . The discussions she designs help to generate constructive and insightful conversations that lead to better outcomes.
During her career, Suzannah has been Head of Engagement at a social research agency and held the same position at the Cabinet Office agency the Central Office of Information (COI). At the COI she worked with government policy makers and NHS bodies to both commission and deliver public and stakeholder engagement. Suzannah joined the JLA team as an adviser in April 2019.
Steering group
The steering group are a committed and proactive group of patient, carer and clinical representatives that oversee the PSP, organise and complete its activities, and are ultimately accountable for key decisions made. Members bring with them knowledge of breathlessness, an understanding of the patient, carer and clinician populations and access to networks of patients, carers and clinicians.
Patient and carer partners
Donna Key
Donna, diagnosed with asthma aged 2, is a 58-year-old wife and mother of a medical student. From the age of 8 Donna has been regularly admitted to hospital following shortness of breath and asthma attacks. Donna has been admitted to hospital in the excess of 70 times which includes the high dependency unit and intensive care unit, she has subsequently been ventilated and is thus classed as severely asthmatic. Since taking prednisolone daily for 30+ years Donna is steroid dependent and has osteoporosis. Biological medications have helped and Donna is on her third (Benralizumab), after previous medications (Xolair and Mepolizumab) have worn off or had too many adverse side effects.
Donna worked as an insurance underwriter until age 29 but lost her job because of the amount of time off work due to sickness and after having her son at 28 weeks Donna did not return to work, both due to her son’s poor health and her own health worsening.
Megan Lewis
Meg is a patient in her 30’s living with Hypersensitive pneumonitis and 48% lung function. With symptoms that were atypical in the lead up to diagnosis. She has worked clinically within the NHS for the last 7 years and has now moved into Public Health as well as being asked regularly to support with education around respiratory health, in particular Hypersensitive Pneumonitis. Living in Wales, she still enjoys walkies with her three border collies and seeing what she can still do with her diagnosis.
Melissa Holston
Melissa lives with severe asthma and is a bereaved COPD carer. Melissa has a professional and educational background in classics, storytelling and artistic direction and is a passionate practitioner of the arts, both established and emerging.
Graham Ryott
Graham has had asthma since the age of 4. Over the course of his life he’s tried many new treatments. Graham’s condition is now well controlled through a combination of tablets and inhalers. He was an active member of a local Asthma UK campaign group in his 20s and is now involved with several groups and committees associated with Asthma + Lung UK and the Primary Care Respiratory Society. His daughter also has asthma so Graham is interested in many initiatives to help parents of children with asthma, including improving air quality. Graham is a research chemist and has worked on many research projects with several academic institutions in the UK.
Ruth Webb
Ruth Webb is 73 years old and was diagnosed with COPD in her mid-50s after experiencing pleurisy and pneumonia followed by a prolonged series of lung-infections. She had suffered from throat and lung infections from her late-20s, throughout her teaching/lecturing and inspecting/advising careers. These were made worse by her often continuing to work when doctors advised her to stay at home and rest/recover. One lung specialist speculated, when she was in her early-50s, that she had a resident pneumonia in her right lung, which has more scarring than her left, and which doesn’t process oxygen efficiently.
Martin Davies
After studying Industrial Electronic Engineering, he has worked in design, manufacturing, sales and marketing and the latter as a Company Director. His career was cut short by a critical illness in 2008 which resulted in a stay in hospital for six weeks, three of which in intensive care, which ultimately led to his retirement. He was diagnosed with Bronchiectasis after several admissions to hospital with pneumonia in 2017.
Martin is now 72, he has a son, a daughter and two grandchildren and will celebrate his 50th wedding anniversary with his wife next year! As a Patient Partner with Dorset Healthcare, he sits on the Quality Governance Group and for NHS England and is a PPV for Major Trauma and Burns CRG. Martin is passionate about improving health for future generations and is grateful that his life has been saved twice by the compassion and dedication of so many clinical teams.
Clinical partners
Beverley Bostock
Beverley works as an Advanced Nurse Practitioner in long term conditions in general practice in Gloucestershire and is an independent prescriber. She is a PhD researcher with Edinburgh Napier University, looking at improving mastery of asthma in adolescents. Bev is the Asthma Lead for the for the Association of Respiratory Nurses (ARNS) and Chair of the ARNS Respiratory Diseases committee. She also sits on the Executive Committee of the Primary Care Respiratory Society. She has an MSc in Respiratory Care and an MA in Medical Ethics and Law.
Bev was a member of the Topic Expert Group which developed the Asthma Quality Standards for NICE and sat on the National Review of Asthma Deaths. She is a member of the National Severe Asthma and FeNO working groups and is a National Severe Asthma Champion. She is a regular speaker at conferences around the United Kingdom and is a member of the International Coalition of Respiratory Nurses. Bev is Editor in Chief of Practice Nurse Journal and has been a Queen’s Nurse since 2015, a title awarded to nurses who have demonstrated a strong commitment to high quality, person-focused care.
Dr Charlie Reilly
Dr Charles C Reilly is a NIHR Advanced Clinical Academic Fellow, Consultant Physiotherapist King’s College Hospital and Adjunct Senior Lecturer within the Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King's College London. Dr Reilly’s clinical and research expertise focuses on the pathophysiology and non-pharmacological interventions for chronic breathlessness.
Prof Jaclyn Smith
Jacky Smith is a Professor of Respiratory Medicine at the University of Manchester, an Honorary Consultant in Respiratory Medicine at Manchester University NHS Foundation Trust and the Director of the Manchester NIHR Clinical Research Facility. She set up and runs a multi-disciplinary team translating neurophysiological mechanisms in cough and facilitating the development of novel therapies.
Dr Katherine Hickman
Katherine is a GP Partner in Bradford and Chair of the Primary Care Respiratory Society, Respiratory Lead for West Yorkshire Health and Care Partnership and Primary Care Lead for NRAP. Outside of work she enjoys cooking, camping and outdoor swimming and has recently rediscovered her love for singing and joined a choir.
Dr Kyle Pattinson
Kyle Pattinson is an Associate Professor at the University of Oxford and an Honorary Consultant Anaesthetist at Oxford University Hospitals NHS Foundation Trust. His research focuses on understanding the neural mechanisms of breathlessness perception (primarily investigated with functional magnetic resonance imaging) and in clinical translation of these findings to develop better treatments for breathlessness.
Dr Rachel Evans
Dr Rachael Evans is an Associate Professor and Consultant Respiratory Physician at University of Leicester and University Hospitals of Leicester (UHL) NHS Trust. Rachael leads and is part of several national and international grants to investigate the diagnosis and treatment of breathlessness, and clinically runs a combined cardiorespiratory diagnostic service.
Dr David Lo
Dr David Lo is an Associate Professor at the University of Leicester, and an Honorary NHS Consultant at the Leicester Children’s Hospital. His clinical and research interests are in the treatment of childhood respiratory diseases, with a focus on difficult asthma and preschool wheeze. David currently holds an Advanced Research Fellowship award from the National Institute of Health and Care Research (NIHR), and is the Paediatric Epidemiology group secretary for the European Respiratory Society.
FAQs
We’re asking these questions as it would be really helpful for us to know more about you so that we can ensure we’re hearing from the wide diversity of people affected by breathlessness across the UK. These questions are not mandatory and so you don’t have to answer them if you would prefer not to.
No, unfortunately there isn’t the option to save your response and come back to it. You can however open the survey to have an initial read through, close it and take some time to think about your questions, and reopen when you’re ready to submit. Your answers will only be submitted when you have completed sections 1-4 of the survey, so we would recommend only starting to type when you are ready and have a reliable/stable internet connection.
For example if I myself experience breathlessness, and I also care for someone that experiences breathlessness?
It’s fine to submit questions that come from these different perspectives whilst completing the survey, and you won’t need to submit the survey more than once to do so. Simply add any and all questions you have during the survey for these to be included in the study. You don’t need to state from which perspective your question is from.