GAtherton

Patients & Carers meeting May 2017

Dr Susana Marinho is the Consultant Allergist at the North West Lung Centre, University Hospital of South Manchester and was the first full time consultant of this type in the NHS when appointed in 2009.

Susana was asked by National Aspergillosis Centre director Prof David Denning to comment on the role of salicylate allergy in the treatment of respiratory disease & sinusitis as it can worsen several asthma & other symptoms when taken in the form of aspirin and is often treated partly by putting the patient on a diet consisting of foods low in salicylate.

It turns out that aspirin can worsen asthma symtoms but this is not usually caused by an allergic reaction and that has implications for which alternatives to aspirin (Non-steroidal anti-inflammatory drugs (NSAID)) could be used to help treat respiratory disease. Consequently if a respiratory (or sinusitis) patent reports an allergic response to aspirin referral to an allergist is important to help work out whether it is a true allergy, a pseudo-allergy and which groups of NSAIDs are likely to be acceptable instead.

The levels of salicylate in food and the amount absorbed are unlikely to reach levels that are going to contribute to a sensitivity reaction and there is no evidence that a low salicylate diet has any clinical advantage, so Dr Marinho discounts the usefulness of such a diet except in very rare circumstances.

Resources mentioned:

• NHS Choices: Allergy Services UHSM
• Salicylate sensitivity
• UHSM Merger with other GT Manchester Hospitals

by GAtherton

Patients & Carers meeting April 2017

NOTE: the sound quality of this recording is very poor but many of the slides have good notes and there are linkouts to other content so it is worthwhile persevering.

Dr Paschalis Vergilis is the latest addition to the National Aspergillosis Centre team who comes here after extensive training in the US including the highly prestigious Mayo Clinic in Minnesota. Paschalis describes his first research project which is an attempt to treat fungal balls in the lung in situ by direct instillation of one of the newer antifungal drugs.

Last month Nigel, Pam & Adam presented a singing session as a taster to see if we had sufficient interest to run a choir. In the meantime we have raised the idea of promoting singing via Skype too. We have decided with the patients group to push forward with the latter and hope to make progress with the former.

Katie Holmes is a student at University of Manchester doing a project in science communication. She opted to explore the levels of awareness of the impact that damp in our homes has on our health. She is comparing the opinions of a student population with that of a group of our patients and has produced a very good video intended to promote awareness in both groups.

Resources mentioned:

• Paper on instillation of an antifungal drug into lung cavities contining aspergilloma
• Virtual Choir of thousands (Eric Whitehead)
• Hidden dangers: Damp in the home (Katie Holmes)
• Use of musical melody to promote regular breathing (Pam & Nigel Jay)

by GAtherton

Patients & Carers meeting March 2017

The act of singing promotes breath control and exercises the muscles needed for breathing so it is directly beneficial for people who have chronic respiratory health problems. It also promotes wellbeing, social interaction and is fun! Nigel & Pam Jay are professional musicians who held a simple introductory session on singing for our patients & carers, plus a few staff. Six people also attended via Skype.

The intention is to provide every patient with the opportunity to try singing as part of a group, even if they live remotely and can only participate via Skype. If sufficient numbers start to attend regular sessions then we may even have a social choir! This recording gives us an idea of what is entailed.

Graham Atherton then brefly talks about the power of us having a purpose in life even if (or especially when) we have a chronic illness. Purpose can add 7 years to all of our lives.

Resources mentioned:

• Youtube video of meeting
• Virtual Choir of thousands (Eric Whitehead)
• Sense of purpose webpage
• Unlock the power of Purpose video
• Purpose blog
• Which foods are good for gut bacteria
• Kefir

by GAtherton

Patients & Carers meeting February 2017

Manchester University runs a 1-year taught Masters Degree in Medical Mycology that is available to students from all over the world. As part of their studies we invite them to meet our patients group in order to give them experience of what living with some of the most serious fungal infection is like. The students introduce themselves to the community by each giving a short talk about themselves, their countries and their studies. Given the diversity of the applicats backgrounds there is always a lot of interested discussion after each talk.

The group then discussed the new smartphone APP designed to help diagnose and advise on health symptoms and the impact joining a singing group would have on our health

Resources mentioned:

• Youtube Video of Delsa Ghorbani singing in the Iranian version of X-factor.
• Babylon Smartphone Health APP 
• Singing for health (BLF information)

by GAtherton

Patients & Carers meeting January 2017

Tim Entwistle is a researcher working on the impact of a healthy diet on the health of chronically ill people. Tim works in the Heart and Lung Transplant Unit at the University Hospital of South Manchester.

Resources mentioned:

• Benefits of Mediterranean diet for chronic lung disease (British Lung Foundation)
• Mediterranean diet (Patient.info)
• Is garlic an everyday superfood?: the facts (NHS information website)
• A-Z The health benefits of many foods
• European Confederation for Medical Mycology
• Manchester ECMM Centre of Excellence

by GAtherton

Patients & Carers meeting December 2016

Resources mentioned:

• National Institute for Health Research
• Patient partnering with NIHR
• NIHR bid awarded to Manchester
• European Confederation for Medical Mycology
• Manchester ECMM Centre of Excellence

by GAtherton

Patients & Carers meeting November 2016

Resources mentioned:

Fungal Infection Trust

Manchester Fungal Infection Group

Medicine for the mind 

Science to Life

Mast cell activation syndrome

by GAtherton

Patients & Carers meeting October 2016

Resources mentioned:

• In-host adaptation and acquired triazole resistance in Aspergillus fumigatus: a dilemma for clinical management.
• Fungal Aflatoxins Reduce Respiratory Mucosal Ciliary Function.

Youtube video of cilia

Fungal Infection Trust website

by GAtherton

Patients & Carers meeting September 2016

Resources mentioned:

Breathworks

• www.breathworks-mindfulness.org.uk
• www.breathworks-mindfulness.org.uk/research
• www.breathworks-mindfulness.org.uk/mindfulness-courses
• www.breathworks-mindfulness.org.uk/online-courses
• Soundcloud.com

Scottish Medicines Consortium https://www.scottishmedicines.org.uk/ National Institute for Health and Care Excellence https://www.nice.org.uk/get-involved/stakeholder-registration James Lind Alliance http://www.jla.nihr.ac.uk/about-the-james-lind-alliance/ James Doubleday Manchester fund http://www.doubledayfund.org.uk/ European Lung Foundation http://www.europeanlung.org/en/

Other relevant information resources

• The Stress Management Society
• NHS Choices: Understanding stress & its management
• 10 stress busters
• Cognitive behavioural therapy
• Kelly McGonigal: How to make stress your friend
• Mindfulness a description by Prof Mark Williams
• BBC Breakfast TV: What can mindfulness do for chronic pain?
• 3 minute breathing space presented by Prof Mark Williams
• Be mindful online resources

by GAtherton

Patients & Carers meeting August 2016

Resources mentioned:

• The Stress Management Society
• —NHS Choices: Understanding stress & its management
• 10 stress busters
• Cognitive behavioural therapy
• Kelly McGonigal: How to make stress your friend
• Mindfulness a description by Prof Mark Williams
• BBC Breakfast TV: What can mindfulness do for chronic pain?
• 3 minute breathing space presented by Prof Mark Williams
• Be mindful online resources

by GAtherton