26 February Physiotherapy – Regular and Often: Wendy White, Community Physiotherapist, spoke about chest clearance emphasising the need for bronchiectasis patients to do this regularly as an essential part of the self management of the condition. Wendy also stressed the importance of ensuring that the lungs are kept moist by drinking plenty of water – which helps with clearing mucus and breathing – and of exercise to aid and improve lung function. Also covered in the slide presentation were the various methods for chest clearance including the autogenic drainage. The Group then engaged in an active cycle breathing exercise involving the correct method of inhaling and exhaling, followed by gentle huffing – designed to allow deep seated mucus to be removed. Wendy also demonstrated the most effective way to use acapella and flutter devices. She mentioned the value of a Pulmonary Rehabilitation course, noting that bronchiectasis patients can request referral to such a course. A lively discussion ensued with lots of further questions asked both in the main session and over tea/coffee.
26 March 2019 Update from Bronchiectasis Managed Clinical Network (MCN): James Wildgoose – Chair of the Support Group – gave a brief update of the work on the Bronchiectasis subgroup of the Respiratory MCN. The aim of the MCN is to ensure that patients in Lothian receive both a good and uniform standard of care – across all locations. This covers both primary (ie GP) and secondary (ie hospital) care. All the key clinician interests are represented – medics, specialist nurses, physiotherapists, pharmacists as well as NHS Lothian HQ staff. James noted that an important area of work involved updating and disseminating guidelines for treatment. Further he noted that plans were proceeding to update the Self-Management Plan and to produce a pocket-sized fold-out card giving key messages and reporting information for patient use. Finally he noted that the MCN were committed to the updating of the website (this site) and to other initiatives – including the proposed trial of a patient support help-line – being considered with the support of Chest, Heart and Stroke Scotland (CHSS). There was general support from the meeting for these initiatives; a wide-ranging discussion followed.
30 April 2019 Yellow Card Scheme Scotland: Alexander Kiker and Louise Summers from the Yellow Card Centre Scotland gave an excellent account of the Yellow Card scheme which is designed to identify side effects of drugs – and to identify whether action is required in their continuing use. In extreme cases drugs are removed altogether but more commonly the response involves greater care in use particularly for example in target populations. Alexander explained that the Scheme was set up in 1964 in response to the thalidomide episode. The side effects of drugs are specified on the patient information leaflet which accompanies all drugs and these are classified by level of severity as identified in the extensive drug trialling required before they are available for prescribing. The Scheme has been extended and improved over the years; it is now part of an EU wide system and has links beyond Europe. There are now many routes to reporting side effects – including mailing, telephoning, electronic reporting and smart phone APP. Both Louise and Alexander encouraged greater reporting of side effects particularly in relation to newer drugs, denoted by a black triangle, given limited experience of use. There were questions throughout the presentation and afterwards over tea/coffee. (More information is available on the Yellow Card Scheme website www.yccscotland.scot.nhs.uk. Information on reporting side effects can be obtained on website www.mhra.gov.uk/yellowcard)”
28 May 2019: Research Update – to be added
25 June 2019: Bronchiectasis Research: Professor James Chalmers from Tayside gave an excellent presentation – and interaction with those attending – covering some of the main findings from recent research trials. While much remains to be investigated in relation to different forms of treatment for bronchiectasis, a lot of progress has been made in the last few years with some quite promising lines of further enquiry being considered, some following from work on cystic fibrosis. He referred to the vicious cycle of mucus build up, infection, inflammation and airways damage that characterises bronchiectasis, noting that intervention at each of these stages is likely to be helpful – and increasingly available – in an effort to break the cycle. He emphasised, however, the continuing importance of self-management particularly in the form of chest clearance. Specifically he mentioned that the one area of treatment that consistently produced the best results in terms of improved quality of life is regular exercise which greatly facilitates chest clearance. While the reasons for people developing bronchiectasis remain uncertain there is an increasing view that it might be associated with childhood asthma; studies have shown that bronchiectasis patients tend to exhibit greater allergic reactions than others. The Group were closely engaged in asking questions throughout James’ presentation and the discussion continued during the coffee and tea time.
24 September 2019: CHSS – recent developments: Paul Okroj and Hannah Macrae gave a very informative presentation of the changing nature of support for peer groups in which CHSS is currently engaged. Paul started by outlining the ambitious goals surrounding the mission statement “No Life Half Lived” involving a doubling of the coverage of patients/carers over the planning period. He emphasised the central importance of listening to the needs and wishes of patients with chest, heart and stroke conditions and responding to these – an inherent part of the changes being made in CHSS. He also highlighted the crucial role that volunteers play in carrying forward the work in a very crowded voluntary sector environment – and also the views of groups such as our own and the many others countrywide. Hannah Macrae then gave a presentation of the different models of support for groups now being considered and tested – ranging from light touch where groups are largely self sufficient in carrying out their functions through to those requiring more specific assistance. Throughout the presentations there was lively discussion and exchange which carried on through the tea/coffee time.”
29 October 2019: Recent Developments in Bronchiectasis : Professor Hill gave an excellent presentation on the latest British Thoracic Society Guidelines for the treatment of bronchiectasis. This included the whole range of activity from initial diagnosis through to treatment and self management – including for different levels of severity of the condition. Past infection, rheumatoid arthritis, inflammatory bowel disease and immunoglobulin deficiency are known links but in around 50% of cases no cause can be identified. He also emphasised the central importance of regular chest clearance in the self management of bronchiectasis noting that several different approaches were available for doing this; advice from physiotherapy was important in finding the right approach for each patient. Pulmonary Rehabilitation – available to bronchiectasis patients referred by the hospital or their GP – was particularly helpful both in chest clearance and in improving general lung health. Professor Hill indicated that the new guidelines were aimed at ensuring best practice in the diagnosis and treatment of bronchiectasis is disseminated widely. He noted that while much more work required to be done in researching the condition – particularly in mounting large multi-centre trials – a lot of progress had been made over the last 20 years, much through research work carried out at RIE and other centres, and now enshrined in the updated guidelines.”
26 November: AGM and discussion: The chairman and secretary both confirmed that Group had a another successful year – and thanked all those on the Committee for their work during the year. The Treasurer reported that the Groups finances remained in good shape – the final balance as at 31 October standing at £1849.82. This reflected a fall of £410.76, due mainly to a transfer of £500 to Professor Hill’s Trust Fund for research and the costs of the membership survey – set against continuing increases in income (mainly from teas and coffees and the smarties tubes). No new nominations for Committee Members were received; the existing Committee indicated their willingness to continue and the meeting confirmed. Following the AGM the chair then briefly outlined the results of the membership survey. Most respondents preferred the Tuesday meeting date and to continue with 9 meetings per year (current number). Parking was not seen as a major issue since most attendees travelled by public transport. A number of suggestions were made re programme for 2020 and this led to a wide-ranging discussion which continued over tea and coffee.
10 December: Christmas Meeting: A very successful Christmas meeting with a brief discussion of future programme – still a work in progress given some uncertainties on availability of key speakers. There then followed tea/coffee and Christmas fayre ending with a quiz hosted very effectively by the Vice Chair. Over 30 people in attendance; generally felt to be one of the most successful of our Christmas meetings
The next meeting of the Group will be on 25 February, 2020. Further details of the full programme for 2020 will be announced in due course – and included on the 2020 programme page of this website.
This page was last updated on 14 December 2020.