GAtherton

Patients meeting November 2018

Resources mentioned:

http://www.nacpatients.org.uk (Old patients website)

http://www.aspergillosis.org (New patients website in development)

by GAtherton

Patients meeting August 2018

Graham Atherton also spoke of the new patients advocacy group Aspergillosis Trust that is collecting 'selfies' of celebrities to support research and awareness of aspergillosis. If you know a celebrity, let them know.
We are also about to begin the redesign of the patients website we need your help!

Resources mentioned:

Hot weather - heatwave alerts from NHS England

How to cope in hot weather - NHS

https://www.blf.org.uk/British Lung Foundation website

by GAtherton

Patients meeting July 2018

Due to a last minute cancellation we had to change our program with little notice, but we dont think you can see the joins in what we talked about!

Beth again led the way and told us about progress with the wallet/purse information card designed for patients to carry in case of emergency, or just in cases where they need to be able to explain what aspergillosis is! She then moved on to a stunning new development in diagnostics that has just emerged. Diagnosing acute invasive aspergillosis needs to be completed as quickly as possible in order for treatment to begin so that the patent has the best possible chance of the best outcome. There are several barriers to this happening - some tests take a long time to run, others have to be done in batches dur to the high expence involved and still others need highly skilled operation and interpretation. If only there were simple devices on which we could spot a drop of blood and get a yes/no result in a few minutes. Well now there are! Two companies IMMY and OLM diagnostics have developed lateral flow devices (most people will be familiar with this technology used for home pregnancy testing) that will detect a fungal infection in 30 mins at the bedside. Simple to use, interpret and store these deveices are valuable additions to the clinicians toolkit.
 Intended for acute invasive aspergillosis this technology may see more uses in the future, possibly including screening for chronic fungal infections such as ABPA.

Last month Prof Malcolm Richardson launched a new project to be carried out in his department (The Mycology Reference Centre Manchester which is closely attached to NAC). They are going to look at the microbes that are found in the homes of people who have aspergillosis (i.e. the home's microbiome). If successful we might well be able to establish a link between the microbes in peoples homes and aspergillosis. 

We still need more samples so if you have aspergillosis please send us some dust - for further instructions and a kit send your postal address and aspergillosis type to graham.atherton@manchester.ac.uk.

Graham Atherton also spoke of the new patients advocacy group Aspergillosis Trust that is collecting 'selfies' of celebrities to support research and awareness of aspergillosis. If you know a celebrity, let them know.
We are also about to begin the redesign of the patients website we need your help!

Resources mentioned:

Hot weather - heatwave alerts from NHS England

How to cope in hot weather - NHS

https://www.blf.org.uk/British Lung Foundation website

by GAtherton

Patients meeting May 2018

Beth led the way this month involving patients in the design of a new concertina-style credit card sized multifunctional information leaflet that is intended for patients to show when needed. For example in the case of an emergency admission to tell the attending doctors some details about aspergillosis and its specific requirements, a little about the specific limitations of antifungal drugs and more. This was a very popular idea and consequently will be developed further. Beth then went on to discuss the hugely encouraging testing results of several new antifungal drugs that was announced at the Advances Against Aspergillosis conference in February 2018

Prof Malcolm Richardson launched a new project to be carried out in his department (The Mycology Reference Centre Manchester which is closely attached to NAC). They are going to look at the microbes that are found in the homes of people who have aspergillosis (i.e. the home's microbiome), and he showed us preliminary results that suggest that there is a lot of Aspergillus in the homes of those patients we have looked at so far, but we need to look at many more to establish a strong pattern. If successful we might well be able to establish a link between the microbes in peoples homes and aspergillosis. 

This study may seem an obvious thing to do but until very recently we did not have the technology to be able to do this. Advances in microbe identification techniques have made this possible .

BUT we will be able to do nothing unless you can help us! We need a pinch of household dust from the best microbe collector in your home - that is to say your vacuum cleaner dust bag. We will provide gloves, facemask and bag to do this so please don't send us any dust until you have received our letter - to get a letter contact myself at graham.atherton@manchester.ac.uk with your postal address and I will pass on your details to Prof Richardson - we need 100 samples to do the experiment!

Resources mentioned:

National Aspergillosis Centre (NAC)

 Manchester Regional Mycology Manchester Centre

General Data Protection Regulations 2018 (GDPR)

by 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