For information on the meetings programme please see Meetings Programme 2018 Page in this section or e-mail the Group’s e-mail address
breathtakers2010@hotmail.com
30 January: Staying Positive and Dealing with feeling down. Dave Bertin of CHSS gave an excellent talk on approach to dealing with low mood – a common feature of long-term chronic conditions. He identified three main spheres of influence in terms of mood and well-being. First, professional services, such as GP, hospital, physios etc; second, interactions with friends, family, hobbies, faith groups etc; and third, self. He made the point that even with a chronic condition a very small part of someone’s time is taken up with professional services and very much more taken up with the other two. It was important to recognise that, and to try to build a positive attitude involving the friends, family, hobbies etc grouping. The key is to concentrate on the things that suit the individual, recognising limitations and working within these, but not being governed by them – setting goals that are achievable even if they are apparently modest. There was much discussion of these ideas throughout the presentation and these carried on through the tea/coffee time.
27 February: Research Update (Proteus Project). Dr Helen Szoor-McElhinney gave an excellent overview of the Proteus Project work which has involved a number of the Group’s members in helping to disseminate information on the Project – in particular focusing on the exhibit at the Glasgow Science Centre. This seeks to give a hands-on experience of the workings of the lungs, aiming to explain, in non scientific ways, the significance of science in advancing treatments in a medical context. A number of those from the Group involved in this work also spoke giving their impressions of the the Project and the launch of the Science Centre exhibit. Helen invited Group members to suggest research questions – even those apparently simple or mundane – that the Proteus researchers might address over the summer – designed essentially to allow patient input into such questions rather than these being solely researcher driven. Janet Smith, Programme Director of the Edinburgh Book Festival, also then spoke briefly about their interest in developing language which more directly conveys to the general public the significance of breathlessness. She mentioned, as an example, that something like pain was generally well understood and integrated into language – but an issue like breathlessness was less so – and that they were keen to address this language/cultural issue. Finally, Anya Smith and Jo Mair , two colleagues of Helen’s working on the Proteus Project, outlined how they hoped to develop the work noting that a key next step was to seek input from patients as to the type of questions/concerns they would wish addressed – aimed at developing protocols and procedures that meet these when developing treatments based on the thermal imaging technology. They asked the Group for volunteers to help with this work. Throughout, there was lively discussion and questionning.
27 March: Dr Pallavi Bedi, who continues to have a keen interest in bronchiectasis research – and who is well known to the Group through her research work at RIE – gave an excellent talk about some of her key research projects. After briefly describing the nature of bronchiectasis she outlined the objective classification system now being used to categorise bronchiectasis as mild, moderate or severe based on key patient symptoms/factors. She noted that the system was available on the web (www.bronchiectasisseverity.com). Dr Bedi then summarised two specific studies she had carried out. The first was a Lipoxin Study on patients with different severities of bronchiectasis, as well as people without the condition, to assess the potentially different neutrophil responses in relation to inflammation in these different groupings. The second, a longtitudinal study, looked at the likely effects of deficiency in serum lipoxin on severity of bronchiectasis. Both studies demonstrated interesting results which identified yet more detailed questions requiring study. Finally Dr Bedi summarised a range of further large-scale trial work and new treatments coming on stream – notably on inhaled antibiotics including improved delivery mechanisms. She confirmed that significant progress had been made, in recent years, in understanding the condition and leading to improved treatments and that she expected this trend to continue. There was a lively discussion both during and after the presentation.
24 April: Recent Development in Bronchiectasis. Professor Adam Hill, who heads up the Edinburgh bronchiectasis unit, gave an excellent summary of current developments in bronchiectasis. He detailed first the multidisciplinary team in the unit, mentioning in particular the grouping of research nurses helping to take forward the range of research projects being carried out in the unit – many involving volunteers from the Group for clinical trials. Professor Hill then referred to continuing developments in the treatment of bronchiectasis noting that updated guidelines were shortly to be agreed and publicised, with the aim of disseminating best practice in treatment. He also referred to similar developments in Europe. Following this, Professor Hill outlined some of the key results from a specific area of research carried out in the unit – in particular the functioning of white blood cells in the lungs in fighting bacteria causing infections. The work had demonstrated that in bronchiectasis patients these cells do not function effectively in fighting bacteria even though they are available in significant concentrations. This was why antibiotics were required to fight infections and to cut the spiral of inflammation, bacteria build up and exacerbation. More research was required – and in larger trials – to establish why these effects are occurring. Several questions followed in a lively discussion.
29 May: How do we know treatments work? – a rough guide to evidence based medicine. Professor Nick Bateman gave an excellent presentation on the development of drug therapies and their effectiveness. He started with the early history of such treatments, noting that pre-1940’s treatments were largely taken on trust, with no systematic way to demonstrate effectiveness. Thereafter attempts were made to assess effectiveness for certain conditions, but largely on an ad hoc basis until the 1950’s. Drug regulation started to be taken seriously in the mid 19th Century, but at that time focussed on poisons. The major change was prompted by the Thalidomide disaster of the 1960s, with a more formal structure for licensing drugs based on safety and efficacy of drugs. Over time, both UK and EU Regulation strengthened controls leading to the introduction of drug licensing requiring much more direction on use, dosage, side effects and safety warnings. Professor Bateman then outlined the development of the current arrangements for use of medicines. He showed that drug costs now account for a very much higher proportion of NHS spend compared to 1948. A crucial factor now is assessing the patient value of drug treatments given the ever expanding demand, and is increasingly based on cost effectiveness.
He concluded that medicines are generally safe – given the rigorous control system – though no drugs can be completely safe. Cost effectiveness issues are a key issue for the NHS and patients have an important role in the process. Increasingly in future the use of large electronic sets of patient data will be key to improving health care. A lively discussion ensued – both during the meeting and afterwards over tea/coffee.
26 June: Professor James Chalmers was scheduled to give a talk on Developments in Bronchiectasis in Europe. Unfortunately he was called away at short notice to address a meeting in the United States. Instead we held a general discussion on the future of the Group – led by the Chairman. Broadly, those present welcomed the current format, possibly with more of the meetings devoted to members exchanging their experiences of how bronchiectasis impacts on them.
31 July: Changing Relationships. Hazel Waddell from Vocal gave an excellent presentation on the key relationships issues arising for carers, patients, family members and friends arising with health deterioration. Hazel explained that a whole range of emotions arise when the normal roles and responsibilities within a relationship are disrupted in such situations. These include guilt which often reflects underlying emotions such as anger or feelings of inadequacy or inability to cope. Being truthful in expressing feelings – in sensitive ways – and recognising when the carer needs time for themselves and key coping mechanisms are important. Hazel mentioned in particular concentrating on small positive things – perhaps three in the day – as one such mechanism. She also mentioned that Vocal run a range of different courses to assist carers facing such issues and that systems of support are tailored to individual circumstances. She indicated that anyone living in Edinburgh and Midlothian and caring for someone with a long term health condition could seek help from Vocal by calling them; details are available on their website. Several issues were raised in discussion and this continued on in the tea/coffee time.
28 August: Physiotherapy. Kim Turnbull gave a brief update of developments in reconstituting the bronchiectasis Managed Clinical Network (MCN) which is the main committee in NHS Lothian considering levels of service in relation to bronchiectasis. One development the MCN is keen to progress is a small card (business card size) that patients can carry with them recording key information re their bronchiectasis eg dates of infections, antibiotic usage etc. She asked a number of questions about what further information might be of value on such a card eg key contact details. Jo Pentland then gave an excellent review of the different chest clearance techniques starting with the active cycle of breathing, Acapella and, more briefly, autogenic clearance. The first two were demonstrated – with clear messages about technique also confirmed. For example a key issue in “huffing” is not to do this too strenuously; another is to carry out whatever approach the patient uses regularly – and not just at times of infection. Jo referred to the video clips demonstrating the various techniques included on the bronchiectasis website (www.bronchiectasis.scot.nhs.uk ) Various points and questions were considered throughout the session and lively discussion followed during the tea and coffee time.
25 September: What you can expect from your GP. Dr Ninian Hewitt gave an excellent talk on this subject followed by a lively discussion.
30 October: AGM and Discussion. The AGM covered the usual reports. It was agreed that £500 from Support Group funds would be donated to Professor Hill’s Trust Fund for bronchiectasis research. All existing Committee members were re-elected; Mrs Anne Mackay was elected onto the Committee and Mrs Margaret Carey was co-opted as a welcomer at meetings. Following the AGM there was a brief discussion about the future of the Group and the possible areas of interest for future meetings for the 2019 programme. It was agreed that we would reduce the number of meetings by not holding meetings in January, July and August.
27 November: CHSS Patient Requirements Research and General Discussion. Jill Adams of CHSS led a discussion of the key issues that patients require to support them in handling their condition. The key issues identified were; earlier diagnosis with possibility of GP referral for High Resolution CT scan; access to centres of excellence; ongoing review by specialists; and increased awareness and training for GPs about bronchiectasis. Allied to this there was a general discussion of issues to draw to the attention of the newly instituted bronchiectasis sub-group of the Managed Clinical Network within NHS Lothian – many points re-enforcing those summarised above. A lively discussion throughout.
11 December: Christmas Meeting. An enjoyable and well attended meeting. The programme for 2019 was briefly introduced after which there was general discussion over Christmas eats followed by an excellent quiz – thanks to Mostyn for constructing and hosting.
The next meeting of the Group is on 26 February 2019 when Professor Hill will be speaking on recent developments in bronchiectasis.