For information on forthcoming meetings of the group please see here or for further information on the group email: breathtakers2010@hotmail.co.uk.
27 January Meeting: Discussion on future events – open forum. Mostyn Tuckwell, vice chair of the group, chaired an open forum where attendees had an opportunity to give their views on the group both reflecting on the 2015 meeting programme and offering views on future meeting topics. Views were also invited on possible other events that the group might set up. A lively discussion ensued with a range of thoughts and ideas put forward. In general there was a very positive feel to the contributions; suggestions ranged from group outings to subject matter for future meetings – including antibiotic use, the clinic and physiotherapy appointments.
24 February Meeting: Dr Ninian Hewitt – The Respiratory Managed Clinical Network. Dr Hewitt outlined how Bronchiectasis was now recognised as a condition in its own right presenting figures showing the rising trend in cases in recent years. Previously most suffering from a lung condition were diagnosed with either asthma or COPD. Ninian then outlined the role of the MCN – noting that the primary function was to coordinate and control the provision of clinical services for respiratory conditions. He went on to indicate that changes were due to be introduced shortly to give the MCN much more central control of such services, the aim being to provide a more joined up approach for patients – and hence providing more effective and responsive treatments. Ninian concluded by congratulating the Breathtakers group on the production of the recently launched, patient focused, website on bronchiectasis which had received many plaudits from a variety of professional people.
31 March Meeting: Dr Adam Hill – Recent Developments in Bronchiectasis. Dr Hill briefly explained the nature of bronchiectasis and then outlined a series of research studies and potential developments in the treatment of bronchiectasis. Many of these relied upon patient trials and he thanked group members for volunteering for these, noting that there was an ongoing need for such volunteering. He reported that numbers being diagnosed with bronchiectasis were continuing to increase, partly due to better diagnostic techniques and partly to better recognition of potential symptoms. Compared with conditions such as COPD and asthma, it still retained something of a Cinderella image in terms of research spend, but there were signs that this was changing. Continuing research was crucial; even quite small sums of money could help in conducting small, but nonetheless important, research exercises. A lively question and answer session ensued.
28 April Meeting: The benefits of singing. Sarah Ward, Kathy Stewart and Anne Ritchie from the Cheyne Gang led the singing session. Sarah briefly explained the initiative that she and Pauline Waugh have developed to promote the benefits of singing to those with chronic chest conditions. She further explained that a singing group – the Cheyne Gang – had been set up, meeting regularly in the Stockbridge area of Edinburgh. This was open to anyone with an interest. Subject to funding there were thoughts of setting up a similar group in the south side of Edinburgh and perhaps a third group. Kathy then introduced the group to some simple relaxation exercises before getting us to join in singing for ourselves. A few simple songs – some sung in rounds and in parts – were followed by the Beatles old favourite “Eight Days a Week”. Much laughter and huge enjoyment. Some group members – of advancing years – commented that this was the first they had sung since primary school! Almost certainly we will look to include a singing session in next year’s programme. Anyone interested in becoming involved with the Cheyne Gang can contact Sarah on e-mail address Sarah.Head@lothian.scot.nhs.uk
26 May Meeting: Developments in Europe. Dr James Chalmers, from Ninewells Hospital, Dundee, presented information on developments in bronchiectasis research and treatments in Europe noting that there is now a European patient based body seeking to identify the key requirements of bronchiectasis research across Europe – both from patient and clinician perspectives. Some 40 countries are involved in the body; a key starting point is the building up of a simple batabase of patients to collect key facts about bronchiectasis patients across countries. The aim is to have some 10, 000 entries by 2020 – which is estimated to be around half the total of bronchiectasis patients in these countries. An interesting point is that there tends to be quite high incidence of bronchiectasis in Spain and some Eastern European countries ie in hotter climates, which might be thought counter-intuitive. It is also clear, however, that the symptoms of the condition vary widely as indeed they do for patients in Scotland. A lively discussion ensued – throughout the presentation. Group members very much agreed with the views expressed in the research findings presented and generally felt encouraged that work on the condition was being undertaken on such a wide front – supported by EU funds.
30 June Meeting: Edinburgh Patient Partnership Supporting Assessment and Teaching (EPPSAT). Kirsty Egan, from EPPSAT, explained that the role of the Patient Partnership is to provide patients for trainee doctors when taking their exams. She said it was preferable to have patients with a medical condition – respiratory being good – although the doctors were not expected to diagnose any existing problems. They are assessed on how they interact with patients and their attitude and handling of the many situations that can arise. They run several different examinations at various times during the year and are always in need of patients. The examinations are usually carried out at the Western General Hospital. Free transport is provided together with lunch, and breaks throughout the day. A lively discussion ensued and the general feeling was that volunteering under this Partnership would be well worthwhile to allow trainee doctors to develop their skills for the future – particularly in treating future patients with chronic conditions. Two leaflets and a DVD were provided giving more information for anyone wishing to volunteer.
28 July Meeting: Developments in Clinic Research Studies. Dr Palani Velu gave a brief presentation on an auditing study being conducted in the unit on the effects of different approaches to the use of IV antibiotics – hospital, part hospital and part home, and wholly home. While there were some differences shown in terms of period to next exacerbation, re-admission to hospital etc, none of these were statistically significant. This demonstrates that home IV treatments are as safe and efficacious as hospital IV antibiotic treatment. Dr Palani Velu also invited comments on IV treatments more generally and whether any improvements could be made for patients. The main issue raised was the difficulty that elderly patients might have in carrying out home IV treatment, although it was also recognised that this issue was taken into account by the clinic in the training process and in deciding whether home treatment is possible. Dr Pallavi Bedi also briefly summarised the range of unit research studies, completed and ongoing. A lively exchange ensued and carried on over tea and coffee.
25 August Meeting: Anne Toye, Community Support Worker, Chest Heart and Stroke Scotland (CHSS), gave an excellent presentation on the work of CHSS and her role as a Community Support Worker in particular. She explained also the work on which CHSS is now engaged to improve communication with people from hard to reach sections of society. This involves a review of all health material to include more summaries, DVDs and webcasts, together with making material available in formats suitable for people whose first language is not English (including British Sign Language). This led to some questions and lively discussions – carried on over tea and coffee.
29 September: No meeting.
27 October: AGM. Business was transacted quickly – within 20 minutes. The treasurer reported that our funds were in a healthy position and it was noted that a portion of the balance would likely be used to purchase equipment for the clinic – subject to successful application for funding from a charity. No nominations were received for new committee members; the current committee had noted their willingness to stand for a further year and they were confirmed in office. There followed a discussion on CHSS matters and more generally on raising awareness and publicity for bronchiectasis. One idea which we will be pursuing is having advice material being relayed by TV screen in the waiting room – as currently occurs in some waiting areas in ERI eg A&E
24 November: British Lung Foundation. Nessie Blair of the British Lung Foundation (BLF) gave a presentation on the work of the BLF outlining the range of support and lobbying activities carried out by the BLF As a respiratory nurse herself in the past, Nessie explained that she had a keen interest in respiratory conditions and seeing the delivery of respiratory services improved. She outlined the main conditions on which BLF concentrate and she detailed some key partnership arrangements which have been built up particularly with the BLF Health Professionals Programme. Nessie also supplied a range of pamphlets and other written material which can be used on our clinic table. Following the presentation a lively discussion ensued over tea and coffee.
15 December: Christmas Party. Excellent gathering again – plenty of food, secret Santa and general chat.
The meetings programme for 2016 will be posted on a separate page of this website shortly.
Last Reviewed -13th January 2015