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.
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