Martha's Rule: A Lifeline for Patients and Families in the NHS
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Martha's Rule is a proposed healthcare initiative in the United Kingdom that aims to empower patients and their families with the right to seek a second medical opinion. Named after Martha Mills, a 13-year-old girl who tragically died from preventable sepsis, the rule is gaining traction and support, including the Parliamentary and Health Service Ombudsman and Healthwatch. Here, we look at Martha's Rule's significance and potential impact on the NHS and patient care.
The Tragic Case of Martha Mills
Martha Mills was a 13-year-old girl enjoying a family holiday in Wales when she sustained a severe injury to her pancreas after falling from her bike. She was admitted to King's College Hospital in London, a specialist centre for children with pancreatic issues. Despite several opportunities to escalate her care, Martha's deteriorating condition was not adequately addressed. She developed sepsis and passed away, a tragedy that an inquest later ruled could have been prevented with better care.
What is Martha's Rule?
Martha's Rule aims to serve as an extra safeguard for patients or their loved ones who want a second opinion about treatment options, particularly when there is a suspected deterioration or serious concern. The rule would shift the balance of power from medical discretion to the patient or their family, enabling them to trigger a request for a second clinical opinion directly.
Support and Advocacy
Rob Behrens of the Parliamentary and Health Service Ombudsman has expressed full support for the introduction of Martha's Rule. He emphasised the need for patients to be listened to, citing numerous cases where patients were failed by their doctors due to a lack of attention. Healthwatch also backs the initiative, highlighting its potential to save lives if implemented correctly.
International Precedents
Similar systems exist globally, including a measure in Australia known as "Ryan's Rule," named after Ryan Saunders, who died from an undiagnosed streptococcal infection. The rule allows patients or their families to request a clinical review if their condition deteriorates.
Future Prospects
Health Secretary Steve Barclay has tasked officials with exploring the feasibility of implementing Martha's Rule in the UK. The rule could be a significant step forward in improving patient safety and ensuring that the voices of patients and their families are heard.
Martha's Rule has the potential to be a transformative addition to the UK's healthcare system, offering a lifeline to patients and families who feel their concerns are not being adequately addressed. As the NHS continues to evolve, implementing such a rule could be pivotal in ensuring that no more lives are lost due to medical oversight.
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NHS Complaint Procedures
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The NHS values feedback, both positive and negative, as it contributes to service improvement. If you are unhappy about the care, treatment, or service you've experienced from the NHS or a GP, you are entitled to make your voice heard. Your feedback could instigate changes that benefit both you and others in the future, and there are many reasons why it is important:
Accountability
Healthcare providers are responsible for delivering a high standard of care. When they fall short, they should be held accountable. Complaints can serve as a mechanism for this accountability.
Quality Improvement
Feedback is essential for any organisation that aims to improve. By pointing out what went wrong, you can help the NHS identify areas for improvement. This can lead to changes in procedures, training, and resource allocation, ultimately raising the quality of care for everyone.
Patient Safety
If you've experienced a lapse in the standard of care, others may have too. By bringing attention to the issue, you could be helping to prevent future mistakes that compromise patient safety.
Transparency
Hospitals and GP practices benefit from being transparent about their successes and failures. Complaints can be a form of data that helps the public and the organisation understand how well it is performing.
Empowerment
Making a complaint can be empowering for patients and families. It gives you a voice and can help you feel like an active participant in your healthcare rather than a passive recipient.
Legal and Ethical Reasons
In some cases, complaints may lead to legal action or disciplinary measures against healthcare providers who have been negligent or have violated professional standards.
Resource Allocation
Complaints can highlight areas where resources are lacking. This could lead to increased funding or other resources being allocated to address the issue.
Public Trust
Maintaining public trust is crucial for a publicly funded system like the NHS. Addressing complaints effectively is an integral part of maintaining this trust.
Understanding Your Rights
Before you proceed with a complaint, it's crucial to understand your rights as a patient. The NHS Constitution outlines these rights, which include:
- The right to high-quality care
- The right to be treated with dignity and respect
- The right to confidentiality
- The right to complain and have your complaint investigated
Initial Steps to Take
Identify the Issue
Before making a complaint, clearly identify the issue you're facing. Is it related to:
- Medical treatment?
- Staff attitude?
- Waiting times?
- Facilities?
Clearly understanding the issue will help you articulate your complaint more effectively.
Direct Communication with the Service Provider
If you're unhappy with an NHS service, it's often beneficial to discuss your concerns directly with the service, either with the clinician or the service manager. Many issues can be sorted out swiftly at this stage.
Patient Advice and Liaison Service (PALS)
Before moving on to formal complaints, you may want to speak to the Patient Advice and Liaison Service (PALS) who can:
•Help you with health-related questions
•Help resolve concerns or problems
•Tell you how to get more involved in your own healthcare
PALS can give you information about:
•The NHS
•The NHS complaints procedure
•Support groups outside the NHS
You can usually find a PALS office in NHS hospitals, or you can search for your nearest PALS online.
NHS Complaints Advocate
If you're contemplating making a formal complaint, you can seek assistance from an NHS complaints advocate. They can guide you in drafting a complaint letter and may accompany you to meetings. However, they cannot complain on your behalf.
Informal Complaints
Verbal Complaints
Sometimes, issues can be resolved quickly through informal channels. You can start by speaking directly to the clinician or a manager. This is often the quickest way to address minor concerns.
Written Complaints
If you're uncomfortable speaking directly or the issue is more serious, you can write an informal complaint via email or a letter. Make sure to include:
- Your name and contact details
- A clear description of the issue
- What you would like to happen as a result
Formal Complaints
Identifying the Appropriate Body
You can complain directly to the NHS service provider (such as a GP, dentist, or hospital) or to the commissioner of the services. If your complaint involves multiple organisations, you need only file one complaint, and the organisation that receives it will coordinate with the others.
Time Constraints
Complaints should ideally be made within 12 months of the incident or of becoming aware of the issue. This timeframe can be extended under specific conditions.
Methods of Filing a Complaint
Complaints can be lodged verbally, in writing, or via email. If you're filing a complaint on someone else's behalf, their written consent will be required.
What to Anticipate After Filing a Complaint
- Acknowledgement: You should anticipate an acknowledgement and an offer for a discussion regarding handling your complaint within three working days.
- Investigation: Your complaint will undergo an investigation, and you'll subsequently receive a written response outlining the findings, apologies if warranted, and actions taken as a result of your complaint.
- Ombudsman: If you're not content with the outcome, you can escalate your complaint to the Parliamentary and Health Service Ombudsman.
Alternative Avenues for Feedback
- Friends and Family Test (FFT): A quick and anonymous method for offering feedback.
- Patient Reported Outcome Measures (PROMs): Specifically for patients who have recently undergone hip or knee replacement surgery.
Your opinion matters. If you're dissatisfied with the healthcare services you've received, you have the right to file a complaint. However, it's worth noting that the way complaints are made and handled is also important. Complaints should be constructive, specific, and based on facts to be most effective. They should be made through the appropriate channels and following the procedures set out by the healthcare provider.
For more in-depth information, you can visit the NHS website.
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Accessing GP Services: A Detailed Overview
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In May 2023, the UK government and NHS announced a multi-million-pound overhaul of primary care services to make it easier for patients to access their general practitioners (GPs). Here, we provide a detailed overview of what these changes mean for patients, from the technology upgrades to the role of care navigators.
Key Highlights of the New Plan
- Immediate Response to Patient Queries
Patients can now find out how their request will be handled on the same day they contact their GP practice. This eliminates the need for patients to call back later to find out the status of their query.
- Technology Upgrades
This year, a £240 million investment will be made to replace old analogue phone systems with modern digital telephony. This ensures that patients never encounter engaged tones when calling their GP practice.
- Online Tools
Easy-to-use online tools will be introduced to help patients get the care they need as soon as possible. These tools will be integrated with the clinical systems, allowing practice staff to identify patients and their information quickly.
- Urgent and Non-Urgent Appointments
If a patient's need is urgent, they will be assessed and given an appointment on the same day. For non-urgent cases, appointments should be offered within two weeks, or patients will be referred to NHS 111 or a local pharmacy.
- Role of Care Navigators
Receptionists will be trained to become expert 'care navigators' who gather information and direct patients to the most suitable healthcare professional. This aims to simplify and streamline the process for patients.
What This Means for Patients
- Easier Access to GPs
The new plan aims to end the 8 a.m. scramble for appointments by improving technology and reducing bureaucracy. Patients will find it easier to get through to their general practice team online or over the phone.
- Faster Response Times
Patients will know how their query will be managed on the same day they make contact. This is a significant improvement over the previous system, where patients often had to call back or wait for a response.
- More Convenient Options
The introduction of modern online booking and messaging systems will offer patients a convenient way to get the help they need, freeing up phone lines for those who prefer to call.
- Specialised Care
Care navigators will help assess, prioritise, and respond to patient needs. They will direct patients to other professionals within the general practice or other medical professionals, such as community pharmacists, who can best meet the needs of the patients.
The government's new plan to overhaul primary care services is a significant step towards modernising how patients contact their GP surgeries. With technology upgrades, specialised care navigators, and a commitment to faster response times, patients stand to benefit greatly from these changes. The aim is to make things more convenient for patients and make the workload more manageable for general practice teams, thereby improving the overall healthcare system.
The full plan can be accessed here.
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Unvalidated Laboratory Testing
Commercial laboratories can sell their diagnostic tests directly to the public, or they can be ordered by non-NHS providers of healthcare. The reasons given can sound very persuasive about how useful those test results can be - for example, testing for organic acids in your urine to check your nutritional status or testing for mycotoxins in your urine to assess if you have been exposed to excessive airborne mould spores. Unfortunately, these results are often useless for the purpose intended.
It is important that testing is validated for clinical use for the purpose it is being used for, for example:
- An Organic acid profile in urine is validated and used by the NHS for testing patients for very rare genetic problems that lead to an accumulation of an organic acid and a deficiency in certain cellular products. These levels are likely to be high and the result is clear and consistent from test to test. These tests are likely to be carried in in very young children who have inherited an abnormal gene. https://www.southtees.nhs.uk/services/pathology/tests/organic-acids-urine/.
- An Organic acid profile in urine is NOT validated to run on adults who have a normal genetic profile and have no signs or symptoms of metabolic disease. The results are going to need highly specialised doctors to interpret the results. If used for the purpose of, for example, assessing the nutritional status of a patient there is no evidence that the result will tell you or your doctor anything useful. Consequently these are very unlikely to be worth the cost.
If you are tempted to purchase one of these tests it is well worth checking this website for advice https://labtestsonline.org.uk/tests/unvalidated-or-misleading-laboratory-tests
Osteoporosis (Thinning bones)
Many people with aspergillosis are vulnerable to osteoporosis, partly due to some of the medication they take, partly due to their genetics and partly age.
There is a complete guide for the treatment of osteoporosis by the NHS at the National Institute for Health and Care Excellence (NICE) called Osteoporosis - prevention of fragility fractures and you can read it here.
However, you may prefer the easier-to-read guidelines offered by the Royal Osteoporosis Society which is comprehensive and excellent. There is even a helpline manned by a specialist nurse during office hours Monday-Friday.
There are lots of options for treatment available!
Understanding a Fever
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A fever, also known as pyrexia, is a common symptom that can occur in various illnesses and conditions. But what exactly is a fever, and why do we get one? It's important to understand this symptom, as it's often a sign that our bodies are fighting an infection.
What is a Fever?
A fever is an increase in your body's normal temperature range, usually in response to an illness or infection. While the average body temperature is typically around 36.5 to 37.2 degrees Celsius, a fever is generally agreed upon in the medical field to be a body temperature of 38 degrees Celsius or above.
Why Do We Get a Fever?
Fever is not an illness in itself but rather a symptom, often indicative of an underlying condition. It's essentially a defence mechanism of our bodies. When bacteria or viruses invade our systems, our immune system responds by increasing our body temperature. This elevated temperature helps the body to kill off the invading organisms, as many of them cannot survive in higher temperatures.
Moreover, a fever also boosts the body's immune response by stimulating the production of white blood cells, the soldiers of our immune system, and other substances that help fight off infections.
What Constitutes a Fever?
While it's important to remember that everyone's 'normal' body temperature can vary slightly, the NHS categorises a fever in adults as a body temperature of 38 degrees Celsius or higher. However, even a slight elevation in temperature may cause discomfort and is usually the first sign of an illness. Please note it's not always easy to take a temperature accurately. If you feel hot or shivery, you may have a high temperature even if a thermometer says your temperature is below 38C.
Normal Temperature Limits
While the average body temperature for a healthy adult typically ranges between 36.5 and 37.2 degrees Celsius, it's normal for your body temperature to fluctuate throughout the day. For instance, it tends to be lower in the early morning and higher in the late afternoon and evening.
However, if your body temperature exceeds 38 degrees Celsius, it's usually a sign that your body is fighting an infection or illness. In the case of a very high fever of 39.5 degrees Celsius or higher, it's crucial to seek medical attention immediately, as this could indicate a severe infection.
Why Do We Shake During a Fever?
Fever often comes with chills or shivering, which can seem paradoxical when your body is overheated. This shaking is essentially a side effect of your body trying to increase its temperature. The process is triggered by the hypothalamus, our body's thermostat, which instructs our muscles to contract and relax rapidly to generate warmth, leading to what we recognise as shivering.
So, while fevers can be uncomfortable, they are often a sign that your body is doing exactly what it needs to do to fight off an infection or illness. However, it's important to monitor a fever closely and seek medical help if the fever is high, persistent, or accompanied by other severe symptoms such as confusion, difficulty breathing, or severe pain.
You can read more on the NHS.uk website here.
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Living with & Managing Chronic Illness
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As many of you know, chronic conditions like Aspergillosis require more than just medical intervention. Chronic illnesses necessitate emotional resilience, adaptability, understanding, and physical strength. Patient-centric strategies have proven successful in managing illness and improving overall well-being and health outcomes, irrespective of the condition. The journey can be challenging, particularly when first diagnosed, but having an illness like Aspergillosis doesn't mean enduring a life of constant suffering.
What do we mean by manageable?
"Manageable" does not mean that your illness will completely disappear or you will no longer feel its effects. Instead, it means that the symptoms can be controlled to such an extent that they do not dominate your life or altogether remove your ability to function. Managing a chronic condition involves developing a comprehensive and tailored approach incorporating medication, lifestyle adjustments, emotional well-being, and social support.
Chronic conditions require more than medication
Understanding Your Illness
Knowledge is power. Understanding your illness, its symptoms, triggers, and progression will help you manage it more effectively. Ask your doctor(s) questions, do your own research, and consider joining support groups where you can learn from others' experiences.
Acknowledging limitations
When we discuss acknowledging limitations while living with Aspergillosis, there's a metaphor that captures this struggle: The Spoon Theory.
The Spoon Theory, conceived by Christine Miserandino, is a valuable metaphor within the chronic illness community to explain the energy required to live with such conditions. In this analogy, 'spoons' represent energy units. Each day, a person has a finite number of 'spoons' and must budget their activities to ensure they don't run out of 'spoons' before the day ends.
So, how does this relate to acknowledging limitations with Aspergillosis?
Physical Limitations
With Aspergillosis, common physical symptoms like fatigue or breathlessness may require more 'spoons' than usual. Understanding your body's signals and resting when necessary helps you conserve your 'spoons'.
Emotional Limitations
Chronic illness can be emotionally draining. It's normal to feel uncertain and anxious about your condition. According to the National Institute of Mental Health (NIMH), people with chronic illnesses may be more likely to suffer from depression. Therefore, depression is a common complication of chronic illness.
Managing feelings of anxiety or depression requires 'spoons'. Acknowledging your emotional health and seeking help and support when you need it can assist in managing your emotional energy better.
Social Limitations
Every social activity costs 'spoons'. While it's crucial to maintain a social life, it's equally important to recognise when you might need to prioritise rest and recovery.
Work Limitations
The energy expended at work needs to be factored into your 'spoon' budget. Sometimes, it may require a conversation with your employer to adjust your workload or responsibilities to accommodate your health needs.
Understanding and applying the Spoon Theory to your life can be a powerful tool in acknowledging and managing your limitations. It's not about resigning yourself to these limitations but prioritising and becoming effective at working around them.
Each of you will have a different number of 'spoons' each day, and what may cost one spoon for some may cost five for another. That's why it's so crucial to respect and acknowledge our boundaries.
The power of exercise
Exercise plays an integral role in maintaining our health and well-being. Regular physical activity can significantly improve quality of life, boost mood, enhance lung function, and strengthen the immune system. However, the thought of exercise might seem daunting given the physical constraints of Aspergillosis. But it's about finding what works best for you.
Exercise that suits your abilities
Remember, the objective is not to exhaust yourself but to gradually improve your endurance and strength within your limits. Lower-intensity activities such as walking, stretching exercises, or chair-based workouts can be beneficial starting points. Even small activities like light household chores can contribute to your daily exercise.
Pulmonary Rehabilitation
These are programmes specifically designed for people with lung conditions. They involve a combination of exercises to improve lung function, education, and emotional support. Trained healthcare professionals supervise these programmes to ensure safety and efficacy.
Breathing exercises
Exercises like pursed-lip or diaphragmatic breathing can improve lung capacity and help manage breathlessness, a common symptom in Aspergillosis.
Yoga and Meditation
Gentle yoga poses combined with mindful breathing can improve flexibility, balance, and strength while also helping with stress management.
Staying consistent
The key is regularity rather than intensity. Even 10-15 minutes of exercise daily can make a difference. As your endurance builds, you can gradually increase the duration and possibly the intensity of your workouts.
Work with professionals
Always consult your care team before starting a new exercise regimen. They can guide you.
Listen to your body
Most importantly, listen to your body. If you feel excessively tired or experience difficulty breathing, it's time to rest. Remember, acknowledging your limits is not a weakness; it's an essential part of managing your health.
Mental health matters
Living with a chronic illness like Aspergillosis can be physically challenging, but it also exacts a toll on our mental health. Anxiety, depression, stress, and feelings of isolation are not uncommon. Acknowledging these emotions and finding ways to manage them is as important as managing the physical symptoms of the illness.
Understanding the Impact
Chronic illnesses can lead to a range of emotional responses: fear about what the future holds, frustration over physical limitations, feelings of isolation due to changes in lifestyle or others' inability to fully understand your experience. Understanding that these are normal reactions to your situation is the first step towards addressing them.
Communication
One of the most powerful tools in managing mental health is open communication. This could be with family, friends, a support group, or a professional counsellor. Discussing your feelings can provide relief and offer new perspectives.
Professional Help
Psychologists, psychiatrists, and therapists can provide strategies to cope with the stress, anxiety, and depression that can accompany chronic illnesses. Cognitive-behavioural therapy, mindfulness-based stress reduction, and other techniques can help you navigate your emotional journey.
Peer Support
We talk about this a lot, and many of you reading this will already realise the benefits because you attend our weekly meetings. Connecting with others who are dealing with similar experiences can be incredibly helpful. Support groups provide a platform to share experiences, learn from others, and gain emotional comfort from knowing you're not alone.
Self-care
Prioritise activities that you enjoy and that help you relax. This could be reading, listening to music, gardening, or any hobby that provides a sense of calm. Mindfulness exercises, yoga, and meditation can also be effective in reducing stress and promoting mental well-being.
Depression is not a weakness
It's not just the physical discomfort and limitations that pose a challenge. Still, the emotional burden carried with a persistent health condition can also be substantial. Thus, depression is a common complication of chronic illness. Still, it doesn't have to be a normal part of chronic illness. Depression can manifest through persistent sadness, loss of interest in previously enjoyed activities, difficulty sleeping, or changes in appetite. It's important to recognise that depression is not a sign of weakness or a normal part of living with a chronic illness. It's a serious but treatable condition. If you or someone you care for shows signs of depression, seeking help from healthcare professionals is crucial. Therapies such as cognitive-behavioural therapy, medication, or a combination of both can effectively manage depression. Remember, taking care of your mental health is a critical part of managing a chronic illness.
Remember, it's okay to have tough days. Your illness does not define you, and it's okay to ask for help when needed. Celebrate your achievements, no matter how small, and focus on the strengths that help you navigate your challenges.
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Learning to control antifungal drug resistance from the environment
Spores of fungi including Aspergillus fumigatus, the main species that causes aspergillosis, have been found to propagate the growth of strains of fungi that are already resistant to those antifungal medications most commonly used in medical clinics to treat aspergillosis. This can render the most common treatments for aspergillosis useless, which is a concern for doctors.
Where do these strains come from? Most experts suggest that the use of commercial fungicides by farmers exposes the fungus to pesticides that closely resemble the antifungal drugs used by doctors. This exposure is likely to enrich the numbers of resistant spores found in the environment ie in compost, soil, and of course in/on the plant material produced by the farmers e.g. food crops, and flowering plants.
Can we stop using these antifungal chemicals as pesticides? A multi-disciplinary meeting designed to bring together experts from all sides of the debate took place in London on 13th July and those representing the growers outlined how important it is that farmers use these fungicides to prevent crop damage and to produce enough food to feed us all! Completely stopping their use on crops does not seem to be an option.
Given that it seems that there will be antifungal-resistant spores in the environment we live in for the foreseeable future we need to:
- know where they are
- know how to avoid inhaling them
Where might patients come into contact with most antifungal-resistant spores?
Farmers use antifungal pesticides on many crops including:
- Fruits: Apples, grapes, peaches, strawberries, and tomatoes
- Vegetables: Potatoes, onions, corn, and soybeans
- Grains: Wheat, corn, and rice.
- Nursery crops: Roses, trees, and shrubs
Researchers have found antifungal-resistant Aspergillus fumigatus spores on many of these crops or the soil around them, at low levels (0 - 10% of samples).
Is this level of antifungal-resistant spores increasing?
When scientists looked at spore numbers they found that the number of resistant spores increased during the growing season as antifungal pesticides were applied to the crops, but this resistance did not survive the winter (1) and levels were back down to where they were the previous year.
It is apparent that handling crops, or the soil around them is a potential way to come into contact with some spores that are resistant to antifungal medications given in the clinic.
What is the likelihood of these spores causing an antifungal-resistant infection?
Researchers (1) have looked at how resistant the resistant spores are to the level of antifungal medication they will be exposed to in a patient and found that the proportion of the isolates that were resistant to the levels of antifungal medication used in patients was 1-4% - so very low.
Which crops are worst affected?
The most common material found to contain antifungal-resistant material was plant material waste originating from cut flowers and flowering bulbs and other types of waste produced in the industry in The Netherlands (2), so it is clear that composting can promote the growth of resistant spores. Ways to prevent this from happening are under development.
Other materials tested were household waste, wheat grain, poultry manure, cattle manure, horse manure, maize silage & fruit waste and of those antifungal-resistant spores were found only in fresh household waste.
Other researchers across the world (3) have detected antifungal-resistant spores in a range of crops and soils. Highest numbers of resistant spores (or perhaps in places where most research has been done) tend to be in India (rice), China (maize, some house plants, potato), USA (wheat, roses, apples), The Netherlands (orchids), Spain (onions, strawberries), Colombia (carrots) & Italy (grapes).
These were not exhaustive studies and we know that Aspergillus fumigatus (i.e. not antifungal-resistant) itself is found on far more plants/fruits/vegetables, so it stands to reason that if they are treated with antifungal pesticides then it may be possible to isolate resistant spores from them. It is clear that although there is a risk of inhaling antifungal-resistant spores from this plant material, the risk to the domestic consumer is low. Nonetheless, out of an abundance of caution, it might be best to take a few precautions:
a. Avoid handling cut flowers and flowering bulbs from The Netherlands
b. After purchase wash fruit and vegetables prior to storage in the home
c. Dispose of household waste in a timely manner
Action is being proposed and taken nationally and internationally to reduce the risk to aspergillosis patients in particular of inhaling antifungal-resistant spores of A. fumigatus and other fungi (4). Research is ongoing to learn more about what are the causal factors responsible for the increase in resistant spores, which are the main risks to human health and what we can do about it.
In time we should be able to prevent the growth of resistant isolates, ensuring that we have useful antifungal medication for years to come.
1. Effects of Agricultural Fungicide Use on Aspergillus fumigatus Abundance, Antifungal Susceptibility, and Population Structure
Authors: Amelia E. Barber https://orcid.org/0000-0002-3399-1037, Jennifer Riedel, Tongta Sae-Ong, Kang Kang, Werner Brabetz, Gianni Panagiotou, Holger B. Deising, Oliver Kurzai https://orcid.org/0000-0002-7277-2646AUTHORS INFO & AFFILIATIONS
DOI: https://doi.org/10.1128/mbio.02213-20
2. Emerg Infect Dis. 2019 Jul; 25(7): 1347–1353. doi: 10.3201/eid2507.181625
Environmental Hotspots for Azole Resistance Selection of Aspergillus fumigatus, the Netherlands
Sijmen E. Schoustra, Alfons J.M. Debets, Antonius J.M.M. Rijs, 1 Jianhua Zhang, Eveline Snelders, Peter C. Leendertse, Willem J.G. Melchers, Anton G. Rietveld, Bas J. Zwaan, and Paul E. Verweij
3. Azole-resistant Aspergillus fumigatus in the environment by cburks817 · MapHub
4. Nat Rev Microbiol. 2022; 20(9): 557–571.
Published online 2022 Mar 29. doi: 10.1038/s41579-022-00720-1
Tackling the emerging threat of antifungal resistance to human health
Matthew C. Fisher,1 Ana Alastruey-Izquierdo,2 Judith Berman,3 Tihana Bicanic,4 Elaine M. Bignell,5 Paul Bowyer,6 Michael Bromley,6 Roger Brüggemann,7 Gary Garber,8 Oliver A. Cornely,9 Sarah. J. Gurr,10 Thomas S. Harrison,4,5 Ed Kuijper,11 Johanna Rhodes,1 Donald C. Sheppard,12 Adilia Warris,5 P. Lewis White,13 Jianping Xu,14 Bas Zwaan,15 and Paul E. Verweij11,16
NAC CARES Team Joins European Lung Foundation (ELF) Patient Organisation Network
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The National Aspergillosis CARES Team are excited to announce its membership in European Lung Foundation (ELF) Patient Organisation Network. This collaboration marks a milestone in the team's commitment to enhancing the lives of individuals affected by aspergillosis.
Founded in 2000 and working in partnership with the European Respiratory Society (ERS), ELF is a patient-led organisation that works internationally to bring patients and the public together with healthcare professionals to improve lung health and advance diagnosis, treatment, and care.
The ELF Patient Organisation Network is a hub for respiratory patient organisations throughout Europe, fostering knowledge exchange, collaboration, and advocacy initiatives to improve respiratory health and well-being across the continent. Membership of the network provides the CARES Team with access to invaluable resources, expertise, and opportunities to positively impact the lives of those living with aspergillosis.
As an active participant in this network, the NAC CARES Team will contribute expertise, raise awareness at both national and European levels, and help drive positive change. In addition to knowledge sharing and advocacy, the ELF Patient Organisation Network offers opportunities for networking and collaboration. By connecting with like-minded organisations, the team can establish partnerships, share experiences, and collaborate on joint initiatives to create a more supportive environment for individuals living with aspergillosis in Europe.
You can read more about ELF here: https://europeanlung.org/en/
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NAC CARES Virtual Challenge - We've Made It From Lands End to John O'Groats!
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We're pleased to announce that the NAC CARES Team has successfully completed our virtual journey from Lands End to John O'Groats. Over the past few months, our team has walked, cycled, and run an incredible total of 1744km (1083.9 miles)! Starting on February 1st, World Aspergillosis Day, we set ourselves 100 days to complete the challenge, but, we completed it ahead of schedule, on May 12th, 5 days sooner than anticipated.
Our virtual expedition has been a grand tour of the UK, from the stunning cliffs of Lands End in Cornwall to the rugged shoreline of John O'Groats in Scotland. We virtually journeyed through England's diverse landscape, passing through picturesque countryside, vibrant cities, and historic towns. From the iconic signpost at Lands End to the bustling streets of Bradford, the rich cultural heritage of Huddersfield, the dramatic landscapes of the Peak District National Park, the green spaces and cultural landmarks of Sheffield, and the legendary Sherwood Forest - each place a unique story in our broader narrative.
Crossing the border into Scotland, we continued our journey through the Scottish Highlands, with its breathtaking panoramas and rich history. We passed through the charming village of Fort Augustus, navigated around the famous Loch Ness, and made our way through the Cairngorms National Park, known for its diverse ecosystems, unique flora, and rare wildlife.
Our journey culminated at John O'Groats, traditionally acknowledged as the extreme northern point of mainland Britain, marking a triumphant conclusion to our endeavour.
But the importance of this journey extends far beyond the physical accomplishment. This effort was a symbol of unity, resilience, and determination, resonating with the values we uphold in our battle against fungal infections. We embarked on this challenge to raise much-needed funds and awareness for the Fungal Infection Trust, an organisation dedicated to advancing research, promoting awareness, and improving treatments for individuals affected by fungal infections.
We want to express our gratitude for all the support we have had throughout this journey. However, the fight against fungal infections doesn't stop here.
If you have not yet made a contribution or if you feel moved to give more, please do so via our fundraising page:
https://www.justgiving.com/campaign/LEJOG-for-Aspergillosis
Thank you for your part in this journey and for standing alongside us in this vital cause. We celebrate the difference we've made together and anticipate the positive impacts we will continue to make in the future!
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