On Friday, 16th June 2017 I was invited to speak at Medicine & Me: Living with Bronchiectasis, which was jointly organised by the Royal Society of Medicine, the British Lung Foundation and Bronch-UK in London. The event was really well attended and we were treated to a number of talks from experts in bronchiectasis from around the UK.
I focused on telling our story – how my little boys were diagnosed with bronchiectasis when they were aged six and four. I talked about how the diagnosis was difficult to get and how the they have had to adapt to doing physiotherapy twice a day and enduring lots of hospital stays when they were younger.Fiona Copeland RMS Video
The take home points for me from the afternoon where that all patients with bronchiectasis should:-
- Tell their ‘lung doctors’ about their other ailments as often they can help direct the doctor to correct treatment.
- You should get your sputum checked when you are poorly but also post antibiotic treatment and at least once a year when are well.
- You should continue to get their physiotherapy reviewed on a regular basis and to investigate whether pulmonary rehabilitation is an option.
- You should do physio twice a day even when feeling well. Ask your physio to show you how to do the ACBT techniques.
- Make sure you have a self management plan from your doctor (useful to show GP) – which should include that you when you are prescribed antibiotics that they are of a high dose for a minimum of 14 days. If your doctor is reluctant to prescribe these then explain that these are in the management of bronchiectasis guidelines.
Other help/ideas are available:-
- From the British Lung Foundation including a ‘Living with Bronchiectasis’ Leaflets, help lines, exercise videos and singing for breathing workshops.
- There is a useful British Thoracic Society Self Management Tool and other information on the www.bronchiectasis.me website
Chairman of PCD Family Support Group and Mum to two sons with PCD
19th June 2017 updated with videos 30th August 2017