Film: Faces From The ICU
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The European Society of Intensive Care Medicine (ESICM) has produced this very moving short film. Faces From The ICU features patients, family members and staff talking about their experiences of the ICU, going beyond the scientific facts and figures to tell human stories from several different perspectives. To watch the video, find out more about what the ESICM does, or to share your own experiences, visit their site.
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Creative Writing Projects at the National Aspergillus Centre - Caroline Hawkridge - March 2013
https://www.slideshare.net/GTAtherton/caroline-hawkridge-on-creative-writing-projects-at-the-national-aspergillosis-centre-manchester-uk?ref=
| Date | Speaker | Title | Time Starts | Duration |
| Mar-13 | Caroline Hawkridge | Creative writing projects | 00' 20' 16secs |
Tribute to Steph Smith - October 2010
| Date | Speaker | Title | Time Starts | Duration |
| Oct-10 | Liz Smith | Aspergillosis - A Personal account - Steph Smith | 00' 34' 45secs |
... remove mould from my home?
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If you come across small amounts of mould in your home you may want to remove them yourself before they get any worse. Here are some of our tips for how to remove mould, and when to leave it to the professionals.
How do I advocate for myself?
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If you have concerns with how your condition is being managed, or any questions about aspergillosis and its treatment, you may find yourself needing speak up on behalf of yourself. Most people will be able to do this for themselves, or with help from family and friends, but some may need an independent advocate to help them express their wishes and make informed decisions about their condition. Here are our tips for advocating for yourself, or finding an independent advocate.
How do I remove mould from my washing machine?
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Washing machines might not seem like the most obvious place for mould to grow, but if they're not looked after properly they can provide the perfect conditions for the build up of mould and bacteria. Here are some of our tips for removing mould from your washing machine and keeping it clean:
Cleaning:
Either get a family member or friend without a condition complicated by mould to help you, or make sure you are wearing an appropriate mask and rubber gloves for the job.
Take out the dispenser drawer if possible and wash it in hot soapy water. If you can't remove it, clean it as well as you can and use a pipe cleaner or toothbrush to reach around the back.
Don't remove the rubber door seal but pull it back and clean underneath with hot soapy water and/or mould remover. Dry it thoroughly.
Using either a cup of bleach or a washing machine cleaner, put your machine on for the longest, hottest spin cycle - some machines even have a cleaning cycle. Make sure you check your manual first as some companies discourage the use of certain products in their machines and it may invalidate your guarantee if you use them.
If, after cleaning the drawer and seal thoroughly and running several cleaning washes, there is still a smell of mould you may have a clogged drain or filter, or mould growing behind the back of the drum. To solve this problem you may need to seek professional help.
Prevention:
Once you have cleaned your washing machine you should consider the following tips to prevent the build up happening again:
Only use the recommended volume of detergent/fabric conditioner, as residues left over can provide perfect conditions for mould to grow.
Between washes, leave the door and dispenser drawer open to allow air to circulate around the machine.
Dry the rubber seal after each cycle.
Check the drawer and seal regularly, and run a cleaning cycle once a month.
NOTE Disinfectants containing quaternary ammonium salts, bleach, alcohol & hydrogen peroxide have recently (2017 study on heavy occupational exposure) been implicated as a risk factor for increasing the incidence of COPD. We don't yet know why it does this or if it is a hazard to domestic users, but assuming it is caused by the fumes released, ensure you clean in a well ventilated area and wear waterproof gloves to prevent skin contact. Cleaning products containing these chemicals are used very widely - if in any doubt check the list of chemicals contained in any product (bleach is often referred to as sodium hypochlorite). Quaternary ammonium salts go by several different chemical names so if in doubt check against the list published here under 'antimicrobials'
If you can't find an alternative disinfectant and don't want to use one of the irritant disinfectants listed above then you might follow guidelines suggested by the US EPA which suggest just using a simple detergent and thoroughly drying the wetted surfaces.
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How do I get vaccinated?
Illnesses such as the flu can be very dangerous for aspergillosis sufferers. To prevent yourself from becoming unwell we recommend you have the following vaccinations, as well as any other standard vaccines recommended in your country:
How do I do a disability assessment?
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In order to claim government help for living with a disability you will have to complete a disability assessment. This can be a stressful and demanding experience, so we have gathered some helpful tips from those who have already been through the process.
Keep all of your medical records and letters and make sure you have access to online records and appointments. On the day of the interview, take a copy of all the paperwork with you, so you can refer to it if needed.
Try and keep a diary of all of your symptoms and the effects that they have on your life for a few months before your assessment. Symptoms that may have become routine for you are still severe and need to be mentioned. "Mention every little niggle".
Speak to Citizens Advice, or the equivalent in other countries, as they are experienced in navigating the large amounts of paperwork and helping you prepare for the interview. Often people are in a difficult emotional state when trying to fill in assessments, and having the support from a third party is a big help.
When asked about your symptoms and how your condition affects your life, think about how you are on your worst days. A 'good' day to you almost certainly still involves many wearing symptoms, so make sure you don't accidentally gloss over anything.
If you're in the UK, look at subscribing to the Benefits and Work website. They have guides to applying for UK disability benefits, and some of our patients have found their diary templates and wording examples very useful.
Look or ask for tips from others on the Aspergillosis public and private Facebook support groups. Also join groups such as The ESA DLA UC & PIP Survival Guide, or the equivalent in other countries.
If you don't get all you need from your first interview, appeal. Some departments have targets to reach for the first interview, but on appeal you may be more likely to succeed. Even if that's not the case, you will be better prepared the second time around.
Ensuring aspergillosis is recognised as a severe health condition: As aspergillosis is such a rare condition, those drawing up disability guidelines may not be familiar with the disease. The more people know about aspergillosis, the better! The best way to do this in the UK is to get in touch with your local MP and ask them to check with the Minister of State for Disabled People, Health and Work, to ensure that aspergillosis is included as a long-term, incurable, debilitating condition. Refer your MP to the National Aspergillosis Centre for more information. The more people advocating for aspergillosis patients, the more well-known and understood a condition it will become.
For more information:
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