GAtherton

Patients meeting April 2018

Unfortunately the audio-visual facilities let us down in this meeting and we could not project slides for our speakers, so some had to quickly resort to using paper flip charts!

We also have a major technical difficulty when trying to stream this meeting out onto the internet as the service we have used for many years had been withdrawn without warning, so we were unable to broadcast this meeting live. 

Despite all of our difficulties Rachel Orritt gave us a very detailed talk on what range of foods are healthiest for us to eat and why. 

Chris Harris raised a very important issue that had come to the attention of our clinical staff whereby we are often unaware if one of our patients attends a hospital for treatment unless they (the patient) tells us. This also applies to those people admitted to Wythenshawe hospital where we are based in Manchester! David Denning asked us to discuss these issues with our group in an attempt to come up with a workable solution.

Resources mentioned:

NHS Food and Diet advice for healthy living 

by GAtherton

Patients meeting March 2018

This month was intended to begin our new series of meetings based around research involvement of all patients with the Biomedical Research Centre - Manchester (BRC) that is funding some of the research we do at the National Aspergillosis Centre. This research is carried out with part of the £29 million 5 year grant made available to several Manchester health research centres in 2016. Unfortunately we have had to postpone this meeting, which we hope will become a regular event 3 times per year. This series of meetings will hopefully begin at our meeting in April.

Instead we had had NAC Science & Medical Comms Team report back on what activities were carried out at the 8th AAA last month (and will report further on some of the hundreds of new research developments that were described at that event).

NAC, like many other NHS units looking after patients who can become critically ill, has to consider when is the best time to approach a patient and their family about what the patients wants if they become seriously ill and require cardiopulmonary resuscitation (CPR). CPR is potentially lifesaving but can be a very robust procedure that can damage the chest of the recipient if they are elderly or frail  in some way and it is common to give some patients an option on whether or not to receive CPR when doctors consider that the cost to the patient outweighs the possible benefit. There is clearly a time when asking a patient to make the decision on whether or not they wish to receive CPR is appropriate, but particularly in the case of aspergillosis patients when is the best time and how should it be done? Chris Harris leads the discussion.

Illness due to living in a damp home is a common complaint and aspergillosis patients can be especially vulnerable. Graham Atherton talks about a recent research paper that tries to understand the range of symptoms ​ thought to be due to exposure to damp & mould in the home and to classify them into a useful progression of symptoms. Dampness and Mould Hypersensitivity Syndrome incudes progression to Multiple Chemical Sensitivity (MCS) and can be reversed if caught in time.

Resources mentioned:

WORLD ASPERGILLOSIS DAY 2018

8th Advances Against Aspergillosis, Lisbon, Portugal.

National Aspergillosis Centre, Manchester, UK

​Clinical Diagnosis of the Dampness and Mold Hypersensitivity Syndrome: Review of the Literature and Suggested Diagnostic Criteria.

by GAtherton

Patients meeting 8th AAA, Lisbon February 2018

This month's meeting took place at the 8th Advances Against Aspergillosis international meeting in Lisbon, Portugal. The purpose of the meeting was to support aspergillosis patients & carers in Portugal, invited to the meeting but also non-specialist clinicians so the first part of the meeting tells the audience about the National Aspergillosis Centre in Manchester, its development, its clinical services and patient support much of which is also available to Portuguese patients, carers and clinicians. We then have a talk from Beth Bradshaw on how we try to help our patients & carers avoid pitfalls when accessing information & support on the internet and last but not least Rachel Orritt launches the new World Aspergillosis Day which will recur every year on February 1st.

Resources mentioned:

WORLD ASPERGILLOSIS DAY 2018

8th Advances Against Aspergillosis, Lisbon, Portugal.

National Aspergillosis Centre, Manchester, UK

Aspergillosis Support Facebook Group

Skype group

NAC patients support resource

by 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