COVID Vaccination Side Effects
[et_pb_section fb_built="1" admin_label="section" _builder_version="4.16" global_colors_info="{}" theme_builder_area="post_content" custom_padding="7px||7px||true|false"][et_pb_row admin_label="row" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"][et_pb_column type="4_4" _builder_version="4.16" custom_padding="|||" global_colors_info="{}" custom_padding__hover="|||" theme_builder_area="post_content"][et_pb_text admin_label="Text" _builder_version="4.16" background_size="initial" background_position="top_left" background_repeat="repeat" global_colors_info="{}" theme_builder_area="post_content"]Now that the rollout of the second COVID vaccination (using the Pfizer/BioNTech and Oxford/AstraZeneca vaccines) are well underway in the UK attention in our aspergillosis patient communities has turned to the potential for side effects caused by these medications.
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.
Full details of the UK COVID-19 vaccine program are given here.[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
How to manage breathlessness
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Recording from 15 April 2021, when our specialist physiotherapist Phil Langridge gave a talk to our aspergillosis patient and carers support group on breathlessness.
-----Contents of video----
- 00:00 Intro
- 01:05 Meaning of breathlessness
- 03:19 When to seek help (Safety net)
- 04:09 Causes of breahlessness
- 06:53 Things that can be done to help with breathlessness
- 17:19 Techniques to help with breathlessness - Mechanics
- 21:44 Techniques to help with breathlessness - Positions for recovery
- 24:09 Techniques to help with breathlessness - Timing
- 29:27 Techniques to help with breathlessness - Worry
- 32:09 Techniques to help with breathlessness - Other
- 41:04 Take home points
- 43:16 Q&A
You can read more about managing breathlessness here.
The British Lung Foundation has a wealth of information on breathlessness here. [/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
Indoor Air Quality at Home (NHS guidelines )
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Indoor air quality is of significant importance to the health of occupants of a building, be it a home or a place of work. There are multiple potential reasons why the air in a building can become unhealthy and many possible sources of pollution, some of which can be relatively easy to remove while others are not. In fact, indoor air is often more polluted and much more damaging to our health than outdoor air.
This problem was highlighted by the Royal College of Paediatrics and Child Health (RCPCH) and the Royal College of Physicians (RCP) in their report published in 2020. In it, RCPCH & RCP highlighted the impact that poor indoor air had on the respiratory health of children of all ages including asthma, infection, rhinitis and even low birth weight and difficulty sleeping.
The report indicates that increased and better use of ventilation is key to preventing harm to children's health but not at the cost of household warmth.
The inside story: Health effects of indoor air quality on children and young people 2019
Read full details of the report here
Importantly this call for attention to indoor air pollution was met by the UK government health advisory body the National Institute for Health and Care Excellence. An extensive review of the field led to the publication of the new NHS guidelines intended for a range of professionals and audiences:
• Building control, housing and maintenance staff
• Healthcare professionals
• Public health professionals
• Planners and regulators involved with residential developments
• Architects, designers and builders
• Private property managers and private landlords
• Housing associations
• Voluntary sector
• Members of the public
These guidelines now guide a GP for example on what best practice might be if they have a patient asking them for help with damp in their home.
These guidelines are an important improvement for the UK as prior to 2020 clinicians really had little help on what might the best way to advise and help patients. Even though they may believe that a patients' home is damp they would not have known where to get help with improving the home, might not have known what the expected symptoms might be or how serious the impact on health could be. These guidelines provide NHS approved guidance on all these subjects and many more including advice for both homeowners and rental properties.
If your GP or any other health professional is struggling with how to help you, direct them towards this document.
NICE Indoor air quality at home guidelines
Other sources of information on damp homes
European Lung Foundation
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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 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 [email protected]
There are a number of activities happening on the day, you can find out more here.