Doing 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 Facebook support group. 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:
Last Updated on June 19, 2019
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Finding an advocate
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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.
Phone your consultant’s secretary or a specialist respiratory nurse from your team (emails sometimes get buried). Use Relay if you struggle with hearing.
Contact the Patient Advice and Liaison Service (PALS) team at your local hospital. PALS will be able to help you answer questions and resolve any concerns you have about your healthcare.
Get in touch with an advocate via your local council or a disability organisation such as VoiceAbility.
Keep pushing until you get what you need.
For more information, see the NHS advice on getting someone to speak up for you
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Managing Chronic Pain
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Chronic pain is common amongst people with chronic respiratory diseases, and also amongst their carers; in fact it is one of the most common reasons for both to visit the doctor. At one time your doctor’s response might have been simple – check that the cause of the pain should clear up with intervention and then prescribe painkiller drugs to help the patient cope with the short period of pain. If the predicted period of pain is not going to be short they might continue to give you painkillers, but after a certain point we know that two things start to happen:
- The painkillers will start giving you side effects, some of which can be serious (eg. depression). The longer you are on the painkillers, and the higher the dose, the worse this can get.
- Some painkillers – especially those used to treat severe pain – start to lose their effectiveness if given over several weeks
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Nowadays doctors are more likely to try and encourage patients to remain active, to remain at work and, depending on the source of the pain, might well recommend strengthening exercises (improved muscle tone and strength case help support a painful joint). This also helps the patient to socialise, reduces anxiety and the risk of depression, and can even reduce the pain itself.
But wait! You might ask: Won’t moving a painful joint cause more damage and therefore more pain? If done under medical supervision this is unlikely, and overall the pain usually improves and the dose of painkillers is reduced.
Find out more at: NHS – Managing chronic pain
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But what about the chest pain often experienced by people with respiratory illness?
Firstly it is important to stress that all chest pain needs to be examined by a doctor as there are several possible causes and some causes need immediate attention e.g. heart attack!
Some chest pain comes from sore bones, muscles and joints so, as we cannot avoid moving our chests during breathing, we tend to reduce movement for a while and take painkillers until the pain is reduced. But, just as written above, your doctor may start to use a variety of approaches to keep your chest moving, build up the muscles to help prevent future pain, and reduce painkiller dose – the same as with any other joint pain.
Find out more at: NHS Chest pain
How can I reduce my dose of painkillers?
There are several techniques that will help you feel more in control of the amount of pain you are in – some are mentioned in the above link, managing chronic pain. Several exploit a little known fact about pain, which most of us will take some convincing of. Our pain is not generated by injury, it is generated by our brains as a defensive mechanism. That suggests that the amount of pain we feel is not inevitable, we might be able to control it a little by using our brains!
Not convinced? Try watching this video recommended by one of our patients, which helped her understand that we can do something to reduce our pain, and possibly even reduce our dose of painkillers.
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Plugs and Slugs
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People who have aspergillosis tend to cough up characteristic mucoid plugs often when being given oral steroids. These can take many shapes and forms and be different colours depending on what they contain – some can have hard objects within them, others can be very thick/hard on general consistency.
These can be a helpful sign for a diagnosis, so we thought is would be useful if we collected a small library of images for clinicians to refer to, which we will publish here. Patients could also use them to show to your doctor as examples of the kind of thing they are also coughing up.
Images have helpfully been donated by members of the National Aspergillosis Support UK Facebook group.
Contact us if you have examples you would like us to include.
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Living with CPA and ABPA
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Gwynedd was formally diagnosed with CPA and ABPA at the National Aspergillosis Centre in 2012. Below she lists some of the symptoms she experiences and what she has found helpful in managing the conditions.
These symptoms fluctuate and can be very insignificant until a flare-up occurs. Then they can be severe enough to alter what I can do in a day.
- Tightening of the chest and or upper airway.
- Inflammation can be felt as heat and a 'zingyness' in my chest.
- Pain and discomfort over my back in my lungs.
Self-help
- A healthy diet, as recommended by the dietetic society or as guided by a consultant or specialist nurse.
- Extra protein where one is underweight.
- Exercise is essential for my mental well-being and helps me with chest clearing.
My local respiratory consultant firmly believes in the benefits of Yoga and slower breathing to help with chest clearance and relaxation, which reduces inflammation and anxiety and aids the immune system.
Anxiety is a side effect of ABPA & CPA as both conditions are debilitating, and fluctuations occur seemingly with no warning. It is not unreasonable to feel anxious about this diagnosis. Treatments help, as do lifestyle changes.
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Rare disease patient journey to diagnosis
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A map aspergillosis patients may be all too familiar with!
https://twitter.com/eurordis/status/1269906129364156416
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Ear, Eye and Nail Aspergillus infections
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Ear, Eye and Nail Aspergillus infections
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Otomycosis
Onychomycosis
Fungal Keratitis
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Otomycosis
Otomycosis is a fungal infection of the ear, and the most frequently encountered fungal infection in ear, nose and throat clinics. The organisms responsible for otomycosis are usually fungi from the environment, most commonly Aspergillus niger. The fungi usually invade tissue that has already been damaged by bacterial infections, physical injury or excess earwax.
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Symptoms:
- Itching, irritation, discomfort or pain
- Small amounts of discharge
- A feeling of blockage in the ear
In rare cases, Aspergillus infecting the ear may spread to bone and cartilage, causing a severe and life-threatening disease. This is more frequently caused by Aspergillus fumigatus than Aspergillus niger, and is associated with underlying immunocompromisation, diabetes mellitus or patients on dialysis.
A diagnosis of otomycosis is confirmed by taking debris from the infected ear, culturing it on a special agar plate and using microscopy to establish the causative organism. If the infection is deep, a biopsy should be taken for fungal culture and identification. If there is a suspicion of the infection becoming invasive, CT and MRI scans can be used to see whether the fungi has spread to any other sites.
Treatment involves carefully drying and cleaning the ear canal, using microsuction. Aural syringing should be avoided as it can lead to the infection flaring up in deeper sites of the ear. Depending on how complicated the infection is, you may need to further treat with antifungals applied to the ear. Treatment should continue for 1-3 weeks and oral antifungal therapy is only required if the antifungals applied to the skin do not work, or the condition is invasive.
With good ear canal cleaning and antifungal therapy, otomycosis is usually cured and does not relapse.
Click here for more information on otomycosis
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Onychomycosis
Onychomycosis is a fungal infection of the nail, most commonly the toenail. Fungal nail infection is common in the general adult population, with a rate of about 5-25% and increasing incidence in elderly people. Onychomycosis makes up about 50% of all nail disease. There are a wide variety of fungi that can onychomycosis, but T. rubrum is responsible for about 80% of cases in the UK. Aspergillus species, amongst many other fungi, can occasionally cause onychomycosis. Some infections are caused by more than one fungus.
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Symptoms of the infection will vary depending on the type of fungus involved, but thickened nails and discoloration are common.
Some of the contributing factors causing this disease are occlusive footwear, extensive water contact with nails, repeated nail trauma, genetic predisposition and concurrent disease, such as diabetes, poor peripheral circulation and HIV infection, as well as other forms of immunosuppression.
Diagnosis of the causative fungus is achieved by scraping the nail (the material under the nail is the most rewarding material). Small pieces of this are then inspected under a microscope and grown on special agar plates to determine the species responsible for the disease.
Treatment depends on the causative species and the severity of the disease. Antifungal cream or ointment applied to the affected nail is effective in some milder cases. Oral antifungal therapy or surgery to remove the nail may be required. Treatment can last from 1 week to 12+ months, depending on the case. Cure is possible, but takes a long time, as the growth of nails is slow.
The nail fold can also become infected – this is called paronychia, and is usually caused by Candida albicans and other Candida species.
Click here for more information on onychomycosis
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Fungal Keratitis
Fungal keratitis is a fungal infection of the cornea. The most common causative agents are Aspergillus flavus, Aspergillus fumigatus, Fusarium spp. and Candida albicans, although other fungi can be responsible. Trauma, especially if associated with plant material, is a common antecedent to fungal keratitis. Contact lens fluid contaminated with fungi can also cause fungal keratitis. Other possible risk factors include topical corticosteroids, traditional medicines and higher external temperatures and humidity. Bacterial keratitis is more common in contact lens wearers and the western world, whereas in India and Nepal and some other countries, fungal keratitis is at least as common as bacterial keratitis. There are estimated to be over a million cases of fungal keratitis annually worldwide, mostly in tropical countries.
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ymptoms are usually like other types of keratitis, but perhaps more prolonged in duration (5-10 days):
- eye redness
- pain
- excess tears or other discharge from your eye
- difficulty opening your eyelid because of pain or irritation
- blurred vision
- decreased vision
- sensitivity to light
- a feeling that something is in your eye
The best way to diagnose fungal keratitis is to take a scraping of infective material from the cornea. Any fungal agent in this scraping is then grown on a special agar plate for identification. Along with culturing the organism, microscopy is required due to the wide variety of potential causative fungi.
Antifungals applied directly to the eye in the form of eye drops are essential for the treatment of fungal keratitis. The frequency at which they are administered depends on the severity of the infection. In severe cases this is hourly, and can be reduced in frequency after 1 day as improvement is documented. Topical antifungal therapy has a 60% response rate with retention of vision if keratitis is severe and a 75% response if milder. For severe infections, oral therapy is also advised. The antifungal treatment given depends on the causative species. Therapy is usually continued for at least 14 days. Surgical debridement is essential for severe disease.
Fungal keratitis is associated with a ~5- fold higher risk of subsequent perforation and need for a corneal transplant than bacterial keratitis. Recovery of sight is higher if the diagnosis is made early.
Click here for more information on fungal keratitis
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Training an immune system to recognise & help eliminate invasive aspergillosis
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A German research group at the University of Wurtzburg, led by Jurgan Loffler and Michael Hudacek has adopted a completely different approach to treating aspergillosis, instead of developing antifungal medication they have opted to 'train' the immune system of immunocompromised patients to recognise and attack the infection better in the hope that this will improve mortality.
This technology has been copied from cancer research, where we know that some cancers escape attack from the host's immune system and this allows cancer to grow. Researchers are successfully 'retraining' the host's immune system to attack the cancer cells more effectively.
The group took cells from a mouse's immune system (T-cells) that normally attack infecting microbes in order to eliminate infections and boosted their ability to find Aspergillus fumigatus, which is the main pathogen that causes aspergillosis. These cells were then given to mice infected with Aspergillus a mouse model system intended to simulate acute invasive aspergillosis in human patients.
The result was that of those mice that had invasive pulmonary aspergillosis and had no treatment, 33% remained alive whereas for those mice that were treated with the booster T-cells (CAR-T) 80% survived.
This result shows much promise for the treatment of aspergillosis. These experimental results need to be repeated in a human host but it is clear that this approach could form the basis for an entirely new way to treat aspergillosis, including the chronic forms of aspergillosis such as chronic pulmonary aspergillosis (CPA) and maybe even allergic bronchopulmonary aspergillosis (ABPA).
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ISHAM Award for Prof Malcolm Richardson
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Founded in 1954, the International Society for Human and Animal Mycology (ISHAM) is a large worldwide organisation that represents and supports all doctors and researchers that have an interest in Medical Mycology - which includes aspergillosis as well as all fungal disease.
Fungal diseases are generally not given the attention that they deserve from medical authorities so it is vital that diagnostics and research are supported internationally, especially where health services, so the work of ISHAM is particularly valuable.
The immense contribution of medical mycology diagnostics specialist and former Director of the Mycology Reference Centre Manchester Prof Malcolm Richardson to the work of ISHAM has been recognised at the recent ISHAM conference in New Delhi, September 2022.[/et_pb_text][/et_pb_column][/et_pb_row][/et_pb_section]
Mycology Reference Centre Manchester Director (retired) Prof Malcolm Richardson Honoured
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The British Society for Medical Myology (BSMM) has a long and distinguished history in the advancement of education and the promotion of research in all branches of medical and veterinary mycology over the last 69 years (www.bsmm.org), so it is a great honour to be elected to be its President. Prof Richardson follows an illustrious list of fellow medical mycologists who have served as President of BSMM since 1964.
Professor Malcolm Richardson built and ran the highly specialised mycology laboratories at the Mycology Reference Centre Manchester since its inception alongside the National Aspergillosis Centre at the Manchester University NHS FT in 2009 until his retirement in 2020, and still serves the centre as its Consultant Clinical Scientist in Medical Mycology. He has an extensive list of publications, positions and achievements - for more details click here.
Prof Richardson commented "I feel very honoured to be elected as President, having been a BSMM member for 50 years", and it is particularly fitting that the Presidency comes to Manchester as the annual scientific meeting of the BSMM is to take place in the city in May 2023.
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