National Aspergillosis Centre (NAC) Patient & Carer Support meeting: June 2021
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Our support meetings are informal and designed to provide participants to chat, to ask questions and to listen to some expert opinions on a variety of subjects related to aspergillosis in some way - you can often ask questions too. No one need go away without their questions having an answer from the NAC team.
This month we had a talk from National Aspergillosis Centre Team's Graham Atherton with an update on the COVID pandemic and its implications for aspergillosis patients in the UK, Beth Bradshaw of NAC talks about lung function tests and Chris Harris gives us our weekly exercises for 10 mins.
View full Video here
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COVID Vaccination Side Effects
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Most people suffer few or no side effects from either vaccine other than having a slightly sore arm for a day or two or feeling a few aches. Doctors are recommending that we take paracetamol to relieve those symptoms.
The UK government has now published more detailed information on side effects and all three vaccinations currently in use in the UK (a third vaccine named Moderna has recently started to be used). You can read this information at the links below:
You can also report any suspected side effect.
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Aspergillosis monthly patient & carer meeting
????Don't forget that 1pm this Friday (9 April) is our monthly patient & carer meeting.
Hosted by NAC staff, we will present an update on Covid-19, discuss any changes to our service and give a talk/presentation on an aspergillosis related topic.
Discussion and questions are actively encouraged, and this is another great opportunity to meet other patients and carers with aspergillosis.
There are 3 ways to watch:
2) Watch live on Facebook:
COVID Vaccination - hesitating?
What is an MDT?
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I have been told I am to be discussed at MDT, what does this mean?
Don't panic! Most patients with complex conditions like aspergillosis will hear the term 'MDT' at some point in their journey to diagnosis or afterwards.
But what does it mean?
MDT stands for Multidisciplinary Team and is often associated with the care of patients with cancer or suspected cancer; however, MDTs are also used to inform the decision-making process in the care of patients with other conditions, particularly those that are complex.
Okay, so who is in this team, and what do they do?
This team is far more impressive than any sporting team out there. A Multidisciplinary Team brings together a range of clinicians and specialists, all of whom bring their professional expertise in diagnosis, treatment options, and individual patients' overall care - ensuring a joint approach to care.
In the context of the aspergillosis MDT, the team meet once a week, and the core members are:
- Doctors
- Nurses
- Physiotherapists
- Pharmacists
- Laboratory staff
One of the doctors or nurses in attendance will always be the referring clinician. This ensures a patient-centred approach as there is an advocate for the patient who knows their personal circumstances and wishes.
What do they discuss?
This is dependent on the individual case. The team will review (and where possible compare) CT scans, X-rays, laboratory results and medications. They will discuss referral letters, look at the patient history and take into account discussions with the patient.
Does this delay my treatment or diagnosis?
In short, no.
Being told you need to be discussed at MDT may feel like it is delaying treatment or answers; however, MDTs are held weekly and are an essential element in managing complex conditions to ensure the best possible care and treatment in line with national guidance and best practice.
Will I get to know the outcome?
Yes, the team's conclusions and recommendations will be fed back to you at your next appointment, or earlier if necessary, for example, if you need to change medication or have more tests.
When will I be discussed at MDT?
Patients can be referred to the MDT at any point in their journey, be it while a diagnosis of aspergillosis is being considered, or if changes occur and alternative treatment options need to be discussed.
You can find more detailed information produced by the NHS on MDTs here.
If you want to access additional support materials about aspergillosis, click here.
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Aspergillosis Weekly Support Meeting
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Here at the National Aspergillosis Centre, we understand how difficult it is living with a rare disease. Add in a global pandemic, increased social isolation and the fear of contracting Covid-19, and you have a perfect recipe for anxiety, stress and loneliness.
That is one reason why every Thursday at 10am (UTC) we run virtual support meetings via Zoom. They are free, everyone is welcome, and it is a fantastic opportunity to chat with other patients, carers and NAC staff.
Peer support is an invaluable tool when you are diagnosed with a rare disease like aspergillosis. It can help you realise you are not alone and provides an understanding environment to express feelings and concerns. Many patients attend our meetings who have been living with the disease for a long time, and they often share their experiences and personal tips for living with aspergillosis.
Why not come along and join us via the link below:
https://us02web.zoom.us/j/405765043
The passcode is 784131.
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An aspergillosis diagnostic journey
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Aspergillosis is a rare and debilitating fungal infection that is caused by aspergillus mould. This mould is found in many places, including soil, rotting leaves, compost, dust, and damp buildings. There are several variants of the disease, mostly affecting the lungs, and diagnosis is difficult because symptoms are like those of other lung conditions.
Gwynedd Mitchell is 62. She has two adult children and lives with her husband in Wales. Gwynedd is no stranger to health problems; she has extensive allergies, has suffered breathing difficulties from six weeks old, and as a child, she was diagnosed with asthma and suffered frequent attacks. But in 2012, she was left shell shocked when she was diagnosed with three aspergillosis variants, allergic bronchopulmonary aspergillosis (ABPA), chronic pulmonary aspergillosis (CPA) and three aspergillomas (a ball of mould in the lungs).
This is her experience of the aspergillosis diagnostic journey.
Aspergillosis Monthly Patient & Carer Meeting
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Aspergillosis patient and carers meeting, today (Friday, 5 February) at 1 pm.
We understand how difficult it is at the moment with the ongoing national lockdown and this is part of the National Aspergillosis Centre's efforts to provide ongoing support for all patients (not just those of the National Aspergillosis Centre) and carers with aspergillosis.
This month we will be talking about:
- Sars-cov-2 (Covid-19) vaccines and the recent developments
- Immunodeficiency
- Recapping on the global success of World Aspergillosis Day which took place on Monday 1 February
- The importance of getting any new lumps, bumps or ongoing symptoms checked in support of World Cancer Day
- There will also be time for general chat and questions.
The meeting is run by the National Aspergillosis Centre (NAC) staff. It is a great opportunity for any patients and their carers, family or friends to come along, ask questions and talk to other patients and NAC staff.
You can join the meeting for free on Zoom by clicking here, or using the meeting ID: 811 3773 5608.
The code to join is 784131.
If you want to know more about aspergillosis, the symptoms and who is at risk, click here:[/et_pb_text][/et_pb_column]
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World Aspergillosis Day 2021
World Aspergillosis Day (Feb 1st every year) progresses every year and this year was no exception.
Social Media
We are only partway through the social media activity so this number will rise but as of the end of the day on 1st Feb the #WorldAspergillosisDay hashtag was shared 4.9k times & achieved an incredible reach of 806.6k - so up to that point over 800 000 people had seen content tagged with #WorldAspergillosisDay.
Medical Mycology involvement
Medical doctors are probably one of the most important groups we need to reach to be able to influence awareness of aspergillosis and to #ThinkFungus. We are extremely impressed that Medical Mycology groups in France, Brazil, Vietnam and Ghana held highly informative meetings on aspergillosis attended by hundreds of people, all in support of World Aspergillosis Day. Doctors and scientists from 4 different continents of the world have learned about aspergillosis, when to look for it, how to look for it, how to treat it. This is a step-change in awareness worldwide.
In the UK a major Wellcome Trust funded group met on World Aspergillosis Day on Zoom to discuss future aspergillosis research projects,
Patient Involvement
The National Aspergillosis Centre patients groups staged a session entitled 'Shortening the Patients Journey' designed to draw out and identify those aspects of the patient's journey undergone before they were diagnosed with aspergillosis. For some it was relatively quick - only a year or two in one case, but for most, it is a long journey with an ill-defined start, a series of stages in the dark with many twists and turns before they finally reach the end and are treated for aspergillosis, usually with very positive results that improve patient quality of life, sometimes markedly.
The Aspergillosis Trust, a patients advocate group generated lots of interest too, with supporters tweeting from all over the world.
The National Aspergillosis Centre CARES team devised a memorable contribution to make the day for their creative patients and carers - Aspergillusocks!
Pharmaceutical Industry Educational Involvement
Pfizer, who manufacture voriconazole can up with this informative graphic to mark World Aspergillosis Day.
World Aspergillosis Day, 1 February 2021
World Aspergillosis Day is almost upon us!
The aim of World Aspergillosis Day is to raise awareness of this fungal infection that like several other fungal infections worldwide is often under-diagnosed. Diagnosis of aspergillosis is difficult and requires specialist expertise (eg UK National Aspergillosis Centre, a European Confederation of Medical Mycology Cente of Excellence), but it also frequently occurs alongside much more common illnesses such as asthma, tuberculosis, COPD. Fungal nodules occasionally get mistaken for lung tumours.
To mark WAD 2021 the National Aspergillosis Centre will hold a symposium for patients & carers. The theme is ‘Shortening the Patient Journey’ and we will hold a discussion on everyone’s journey to getting am aspergillosis diagnosis. We will try to identify how we can all help shorten the journey.
There will also be a chance to contribute to what the list of research aims as defined by patients and carers should be. We aim to get our researchers to add some of them to their projects.
The event will be held on Zoom and will be free to attend. If you would like to join us on the day, you can access the details via Facebook.
Or by emailing admin@aspergillosisday.org
There are a number of activities happening on the day, you can find out more here.