GAtherton

Patients & Carers meeting December 2017

Rachel presents the Aspergillosis Community Christmas Quiz 2017, you might like to do the quiz yourself by just watching this video - the answers are at the end. Let us know your score at admin@aspergillus.org.uk.

Chris Harris (NAC Manager) mentions the changes we have made to sample packaging following information from our patients & carers in this group in an earlier meeting that indicated the packaging was difficult to use.

Don't forget that there are several ongoing projects including an event at the upcoming conference Advances Against Aspergillosis in Lisbon, Portugal on 1-3rd February 2018.

Resources mentioned: 

Advances Against Aspergillosis Conference

http://www.aaa2018.org

Aspergillus website www.aspergillus.org.uk

by GAtherton

Patients & Carers meeting November 2017

Graham, Beth, Rachel & Chris make up the Patient support & involvement team at the National Aspergillosis Centre. There are several ongoing projects including an event at the upcoming conference Advances Against Aspergillosis in Lisbon, Portugal on 1-3rd February 2018.

Paul Bowyer leads much of the clinical research at the National Aspergillosis Centre and University of Manchester. The group recently applied for funding to set up the worlds first gene knowckout library for the fungl pathogen Aspergillus fumigatus. 

Resources mentioned: 

Advances Against Aspergillosis Conference

http://www.aaa2018.org

Manchester Science Festival

www.manchestersciencefestival.com

Aspergillus website 

www.aspergillus.org.uk

by GAtherton

Patients & Carers meeting October 2017

Beth and Rachel are newcomers to the National Aspergillosis Centre team and will work closely with Graham Atherton

Graham Atherton then provided feedback on the impact our work on greater awareness for aspergillosis has during Fungal Awareness Week 14-18th August, followed by a discussion on our most recent patients survey and how we can improve our service at the National Aspergillosis Centre.

Resources mentioned: 

Neutrophils in action (video)

http://www.aspergillus.org.uk/content/swollen-hyphae-germinate-lung-and-induce-net-formation

http://www.aspergillus.org.uk/content/neutrophils-migrate-through-aspergillus-infected-lung-slice

http://www.aspergillus.org.uk/content/neutrophils-internalise-conidia-living-lung-slices

Cancer cells being forced to kill themselves 

http://www.cellimagelibrary.org/images/43705

Manchester University NHS Foundation Trust

https://mft.nhs.uk/

Advances Against Aspergillosis Conference

http://www.aaa2018.org

Manchester Science Festival

www.manchestersciencefestival.com

Aspergillus website www.aspergillus.org.uk

by GAtherton

Patients & Carers meeting September 2017

Matt Harris is a Pharmacy Technician in the Pharmacy at University Hospital of South Manchester. He agreed to give this patient group a talk and discussion on antifungal drugs and how they are distributed at UHSM.

Graham Atherton then provided feedback on the impact our work on greater awareness for aspergillosis has during Fungal Awareness Week 14-18th August, followed by a discussion on our most recent patients survey and how we can improve our service at the National Aspergillosis Centre.

Resources mentioned: 

Fungal Disease Awareness Week

•  http://www.fungalinfectiontrust.org/fungal-diseases-awareness-week/fungal-disease-awareness-week-august-14-18-2017
• http://www.fungalinfectiontrust.org/?p=1410&preview=1&_ppp=361598fb8e  
• http://www.fungalinfectiontrust.org/?p=1408&preview=1&_ppp=eb213dd47f  
• http://www.fungalinfectiontrust.org/?p=1405&preview=1&_ppp=2c6c9cd3cb  
• http://www.fungalinfectiontrust.org/?p=1403&preview=1&_ppp=3bf130de72 
• http://www.fungalinfectiontrust.org/?p=1400&preview=1&_ppp=f56f987e85   

UHSM Pharmacy Patient Helpline (0161 291 3331)

Aspergillus website www.aspergillus.org.uk

by GAtherton

Patients & Carers meeting August 2017

Many of the people who attend our clinics have allergic forms of aspergillosis for example allergic bronchopulmonary aspergillosis (ABPA).  ABPA is characterised by high levels of IgE in the blood which causes many of the allergic symptoms that are so difficult to live with. Treatment with steroid medication (e.g. prednisolone)  has been used for decades to reduce the amount of IgE in the blood of ABPA patients and thus reduce symptoms, but those who have taken steroids will know that those drugs have a number of unpleasant side effects too eg weight gain, high blood pressure, bruising, blurred vision and many more (see NHS corticosteroid information )

Luckily doctors have started to find ways to cut down on both IgE levels and steroid dose. Many of our patients with ABPA will be given an antifungal medication which will usually reduce IgE and then allow steroid dose to be gradually reduced with your doctors help.

For some time it has also been possible to have an injection of a medication known as Xolair and that can very effectively reduce IgE levels, however it is not often used to treat ABPA as it is really designed to treat severe asthma. Xolair can also sometimes suppress a patients’ immune system a little too much and cause more frequent lungs infections and for many patients that is difficult to manage.

Happily there are new drugs in development that work in a similar way to Xolair so will reduce the need for steroids but these new drugs are specifically aimed at IgE caused by fungal infections. Consequently they should be much better suited to treat ABPA or even severe asthma with fungal sensitisation (SAFS) as both are caused by a reaction to fungal infections caused by Aspergillus. The National Aspergillosis Centre are one of the centres participating in a trial of these new drugs and suitable candidates for the trial will be approached in clinic, or if you want more information contact our clinical trials manager at azad.aziz@manchester.ac.uk. Azad gave our patients a talk on this trial at our latest patients meeting (Friday August 4^th) so you can also listen to the recording (see link below).

Aspergillosis patient Neil gave an illuminating talk in the same meeting on the benefits of having a feeding tube (PEG) fitted to allow supplementation of your normal diet. This is used when a patient is unable to put on weight and it too thin or is losing weight. Neil has put on 13 pounds in a few months thanks to his PEG and strongly recommends anyone who is asked to consider having a feeding tube to proceed with no misgivings. Thank you Neil!

by GAtherton

Patients & Carers meeting July 2017

NB apologies for the poor quality of sound in this presentation - we have another faulty wire in our recording system.

Parul Chandorkar  is Master of Science in Microbiology, Department of Internal Medicine VI, Medical University of Innsbruck, Austria currently visiting  the National Aspergillosis Centre (NAC), Manchester, UK to gain some experience of the clinical diagnosis and treatment of aspergillosis. 

Parul is studying for her PhD at the prestigious Medical University of Innsbruck by perfecting and refining a laboratory 'model' system which we will be able to use to study how Aspergillus spores are able to infect our airways. Her 3d system replicates the tissues and immune system present in our airways, amazingly reproducing how the hair-like cilia that line our airways rapidly beat to move mucus and all the spores that are stuck to the mucus up and out of our lungs. At the moment Parul is working with normal airway cells but of course once perfected she will be able to use cells from a patients with aspergillosis and investigate how we might be able to prevent or slow infection of those cells. Once we know how the cells and airways of an aspergillosis patient differ from people who do not get aspergillosis we may then start to work out how we could repair the damaged immune system. Fantastic work that also prevents us having to do animal work - all these cells come from human volunteers.

Graham Atherton then went on to talk about identifying gaps in aspergillosis patients & carer care across Europe and setting up a patient board to consider priorities for the European Lung Foundation. An informative paper written by another group of patient with rare illness who now run patient priorities projects with ELF is found here - this is what we aim to do for aspergillosis patients.

by GAtherton

Patients & Carers meeting June 2017

Dr Azad Aziz is the Clinical Trials Manager at University Hospitals of South Manchester NHS FT (UHSM) and the National Aspergillosis Centre (NAC), Manchester, UK. 
As such he coordinates and runs all of the wide range of trials we are conducting at NAC and there are many more to come. Azad introduces some of these trials in this talk and also talks about the importance of patient and carer input into the setting up and running of each trial and how they can be involved. 
We already have patient volunteers for one or two trials we are running but will need more for each new trial, so we will be setting up a group of prospective volunteers in order that we advance our research and the development of new drugs and diagnostic techniques as quickly as possible. It seems that we will be able to work with patients & carers from all over the country by using Skype to allow them to participate in meetings from their own home.
Graham Atherton then went on to talk about setting up a a 'Patient priorities' project with the European Lung Foundation.

Resources mentioned:

• National Aspergillosis Centre
• European Lung Foundation (ELF)
• ELF Priority Projects
• Handheld fans for breathlessness research

by 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