This new short fun film has been written by our Associate Member, Education for Health’s, Chief Executive, Monica Fletcher OBE and Jane Scullion, Trustee and Respiratory Nurse Consultant University Hospitals of Leicester NHS Trust, to mark the charity’s 30th anniversary.
“We hope this film will provide a fun way for those who care for children with asthma to get across an important message about effective inhaler use and encourage these children to take part in a whole range of activities and enjoy life to the full,” said Monica.
The two-minute film can be viewed here: https://www.youtube.com/watch?v=Ae5lTVJTaHw
Other World Asthma Day initiatives supported by the IPCRG: World Asthma Day 2017 - IPCRG supports the Unmask My City campaign
Jaime Correia de Sousa represented the IPCRG and primary care perspectives at a Strategic Technical Meeting on the Management of Chronic Respiratory Diseases (CRDs) with the World Health Organization in Geneva 5-6 October 2015 and members of the Federation of International Respiratory Societies (FIRS). The meeting was focused mainly on diagnosis and treatment of asthma and COPD, access to medicines and technologies for CRDs.
There was substantial consensus about the need for strengthening systems to improve diagnosis, recognising the need for simple affordable methods. The group also reviewed the essential medicines list and the WHO PEN protocols (Package of Essential Noncommunicable Disease Interventions for Primary Health Care in Low-Resource Settings), recommending changes to enhance care for people with COPD and asthma.
We will update this information with further news when it becomes available.
Five IPCRG members contribute to the World Health Organization (WHO) Global Alliance against chronic Respiratory Diseases (GARD):
Jaime C Sousa elected as Primary Care representative on the planning group,
Niels Chavannes elected as Scientific representative on the planning group
Kristine Whorlow elected as Patient Organisations representative
Osman Yusuf elected as Country representative
Monica Fletcher, Chief Executive of one of our associate members, Education for Health, elected as Allied Health representative
To view our 2012 annual report click here
On 28 November 2013 Rupert Jones represented the IPCRG at an event organised by the European COPD Coalition (ECC) and the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) under the auspices of the Lithuanian Presidency of the Council of the European Union (EU) to raise the profile of COPD, research about best COPD assessment and care and the involvement of patients and primary care in setting and measuring standards.
Lessons to address the poor state of COPD care in Europe and research in Horizon 2020
To mark World Chronic Obstructive Pulmonary Disease (COPD) Day 2013, the European COPD Coalition (ECC) (1), and the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) (2) organised an event (3) under the auspices of the Lithuanian Presidency of the Council of the European Union (EU). The conference entitled “What role for diseases and patients in shaping Horizon 2020? A COPD case study of patient involvement” discussed the EU Framework Programme for Research and Innovation – Horizon 2020, and standards of care for COPD, with a patient’s perspective.
COPD (4) was taken as a case study, since this chronic lung disease is marked by increasing prevalence among the European population and isone of the leading causes of premature deaths worldwide and yet, awareness of the COPD is largely insufficient.
The degree in which Horizon 2020 – the financial instrument implementing the Innovation Union: an EU initiative aimed at securing Europe’s global competitiveness- is fit to accommodate disease specific research featured high during the debate. “Given the prevalence and societal and economic burden of COPD, there should absolutely be some kind of ring-fencing of funds for specific diseases such as this that has been underfunded to date. In such areas, researches would otherwise find it hard to compete with larger, more established research fields. Additionally, prevention and patient priorities have been neglected for far too long and should be moved up dramatically in the agenda,” said Mike Galsworthy, from the University College London’s Department of Applied Health Research.
“The clock is ticking when it comes to tackle the acute deficiencies in the way that COPD is treated across Europe. Patients themselves should be given a larger role in shaping research, for instance, in prompting actions – i.e. to be better integrated in EU projects – so that policy-makers and healthcare professionals do not trip over the same stone again when delivering care to patients,” pointed out Isabel Saraiva, COPD patient from the Portuguese Association of people with COPD and other Chronic Respiratory Diseases (RESPIRA).
EFA’s report ‘Minimum Standards of Care for COPD Patients in Europe’ (5) was launched during the conference. “As the EFA’s paper highlights, people suffering of COPD and patients of respiratory diseases in Europe have been enduring for decades large disparities in the standards of care received. To overcome these inequalities, patient-driven standards on prevention, diagnosis, care and rehabilitation have to be better measured. There is an urgent need to use this data to drive and improve patients outcomes,“ stated Rupert Jones, General Practitioner for the International Primary Care Respiratory Group.
Over the course of the event, EFA’s booklet ‘Enabling Air Travel with Oxygen in Europe’ (6) was presented as a case study for ongoing discrimination against patients with chronic respiratory diseases.
Notes to editors
(1) The European COPD Coalition (ECC) is a not-for-profit association under Belgian law, based in Brussels, whose role is to advocate for political action to be taken at the European level to reduce the burden of the disease through collective action and campaigns, seeking the development and implementation of a comprehensive EU public health policy on COPD. ECC aims to be a key facilitator of COPD health policy initiatives at European level. The ECC works with all parties interested in fighting COPD and public health officials to boost awareness of chronic obstructive pulmonary disease (COPD) and decrease the morbidity and mortality caused by this respiratory illness, through advocacy and policy development.
(2) The European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) is a non-profit network of allergy, asthma and COPD patients organisations, representing 35 national associations in 22 countries and over 400,000 patients. EFA is dedicated to making Europe a place where people with allergies, asthma and COPD have the right to best quality of care and safe environment, live uncompromised lives and are actively involved in all decisions influencing their health.
(3) This event displayed a wide range of speakers, like Members of European Parliament, researchers, health care specialists, COPD patients. It also included a lung testing (spirometry) for free at the venue.
(4) Chronic Obstructive Pulmonary Disease (COPD) is the only major chronic disease whose incidence is on the increase and is expected to be the third leading cause of death worldwide by 2030 (exceeded only by heart diseases and stroke). You can learn more about the incidence of COPD here.
Pakistan Primary Care Respiratory Group arranged an Academic activity regarding Pulomanry TB on 19th Oct 2013. General Prectioner, Family Physicains, chest physician from the district of Peshawar participated at the meeting. It was chaired by the President of the society Dr Hakeem shah. In the seminar information was provided regarding Pulomanry TB, its causes, presentation, treatment regimen, DOTS Program, causes of Drugs Resistant Tuberculosis in the society and its prevention.
In the end General Secretary Dr Asif Safi stated thanks to all the participants at the meeting for their interest in these academic activities carried out by the Pakistan primary Care respiratory Group Peshawar Kpk pakistan.
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To celebrate World COPD day on November 20th 2013 we invite you to look at 3 IPCRG resources:
- A film from Uganda describing the FRESH AIR survey - click here to view
- Two findings from our UNLOCK programme - click here to download the first, and here for the second
- Tackling the tobacco epidemic click here to see our stop smoking resources
And remember, it’s not too late to submit your abstract to our 7th World conference in Athens, May 2014 – click here for details on how
Making the case for primary care in the ERS White Book, launched Sept 2013, written by IPCRG President Niels Chavannes and Executive Officer Sian Williams.
The chapter summarises the potential positive impact of primary care practitioners on the burden of respiratory disease in Europe, and describes how they could improve access to care and health outcomes. In particular, we should support the calls of the WHO and the Non-Communicable Disease (NCD) Alliance to take action now to combat chronic lung disease. Primary care needs to be made stronger, with less variation of investment between countries and faster progress towards the goals of the 62nd World Health Assembly (WHA62) resolution.