💬 Healthwatch: Your Local Voice in the NHS

Living with a long-term lung condition such as aspergillosis, asthma, or bronchiectasis often means regular contact with hospitals, GPs, and community clinics.
Sometimes things work well — and sometimes they don’t.
That’s where Healthwatch comes in.

Healthwatch is an independent organisation that represents patients and the public.
It exists to make sure your experiences help shape the way NHS and social-care services are delivered.

🏛️ What is Healthwatch?

Healthwatch was set up by law to be the official voice of patients and the public in health and social care.

There are two levels:

  • Healthwatch England – works nationally to influence NHS and government policy

  • Local Healthwatch – works in every local authority area across England, gathering feedback from people using local services

Healthwatch is not part of the NHS, and it’s not a complaints service, but it does have statutory powers to:

  • Listen to people’s experiences of care

  • Report issues and make recommendations to the NHS, local councils, and care providers

  • Request responses from organisations it investigates

  • Escalate serious concerns to the Care Quality Commission (CQC)

Learn more on the Healthwatch website.

🌿 Why Healthwatch matters to aspergillosis patients

People living with chronic lung disease often face delays, limited understanding, or difficulties accessing ongoing support.
Healthwatch helps make sure those experiences aren’t ignored.

1. Raising the patient voice

You can share your experience of healthcare — good or bad — with your local Healthwatch.
They collect stories from across the community and use them to:

  • Identify patterns (for example, problems with accessing respiratory clinics or antifungal monitoring)

  • Produce reports and recommendations for local NHS decision-makers

  • Push for improvements to long-term care pathways and community support

2. Helping to improve new neighbourhood health hubs

As NHS care moves into the community, Healthwatch plays a key role in making sure new Neighbourhood Health Hubs are:

  • Accessible for people with limited mobility or oxygen needs

  • Located where public transport and parking work for patients

  • Designed with chronic-illness patients in mind, not just short-term care

You can feed in your ideas through Healthwatch about what’s working and what isn’t in new NHS community models.

3. Providing information and signposting

If you’re unsure where to go for care — GP, hospital, or new health hub — or how to complain or appeal a service decision, Healthwatch can point you in the right direction.
They offer clear, local information about:

  • NHS patient transport

  • The Healthcare Travel Costs Scheme (HTCS)

  • Local support groups and community services

4. Supporting patient involvement

Healthwatch works with NHS organisations to include patients and carers in planning and reviewing services.
If you’d like to get involved as a patient representative or share your experience of aspergillosis services, Healthwatch can help you join local working groups or consultations.

5. Spotlighting inequalities

Healthwatch highlights where certain groups are left behind — for example:

  • People with rare or complex conditions

  • Patients in rural or deprived areas

  • Those unable to use digital appointment systems
    This helps ensure people with chronic lung conditions are not overlooked when new community-care models are designed.

⚖️ What Healthwatch can — and can’t — do

✅ Healthwatch can 🚫 Healthwatch can’t
Collect and report your experience to NHS leaders Fix individual clinical problems directly
Influence NHS and council decisions Guarantee faster treatment or appointments
Provide advice on local services and support Replace legal or complaints services
Escalate major safety concerns to the CQC Act as your personal advocate in disputes

Even so, their influence can be powerful — many improvements in NHS access and transport have started with patient stories collected by Healthwatch.

📍 How to contact your local Healthwatch

Every local area has its own Healthwatch website and phone number.
You can find yours at:
👉 Find your local Healthwatch

When you contact them, you can:

  • Fill in a short online form to share your story

  • Ask to join a focus group or consultation

  • Request accessible information or help finding services

  • Subscribe to local updates and reports

If you’d like support from the aspergillosis community, NAC CARES can also help you write or submit your feedback.

💬 Why this matters

“Nothing about us without us.”
Healthwatch exists so that patients — including those with rare and chronic conditions like aspergillosis — can make their experiences count.

By telling your story and feeding back to Healthwatch, you help shape better care for yourself and for others who will face similar challenges in future.

by GAtherton

🏥 NHS Neighbourhood Health Hubs: How Community Care Will Work for People with Aspergillosis and Asthma

The NHS is changing how healthcare is delivered — with more care moving closer to home and fewer hospital visits.
A new model called Neighbourhood Health Services (or Neighbourhood Health Hubs) is being rolled out across England from late 2025, and it could make a real difference for people living with aspergillosis, asthma, bronchiectasis, and other long-term respiratory conditions.

🌍 Why care is moving into the community

The goal is to:

  • Bring care to where people live, not just in large hospitals

  • Reduce waiting times by shifting routine tests and reviews out of hospital clinics

  • Join up GPs, nurses, pharmacists, and hospital specialists into one local team

  • Focus on prevention, self-management, and early support

These reforms come from the government’s Healthcare on Your Doorstep announcement (September 2025), supported initially by £10 million across 43 pilot areas in England.

🧑‍⚕️ What a “Neighbourhood Health Hub” looks like

A one-stop local health centre bringing together:

  • GPs and practice nurses

  • Respiratory nurses, physiotherapists, and pharmacists

  • Mental-health and wellbeing workers

  • Dietitians, occupational therapists, and social-prescribing link staff

  • Voluntary and community organisations (e.g. NAC CARES, Asthma + Lung UK)

Some hubs will connect directly to Community Diagnostic Centres (CDCs) – local sites providing CT, MRI, X-ray, lung-function and blood tests through the NHS England diagnostics programme.
The aim is for one joined-up team to share your records and plan your care locally.

🩺 How hubs work with your GP and A&E

The new hubs are designed to fill the gap between GP surgeries and hospitals – giving extra support when you’re too unwell to manage alone but don’t need emergency care.

Home → GP Practice → Neighbourhood Health Hub → Hospital / A&E

🏠 Your GP surgery

You’ll stay registered with your usual GP. They remain in charge of your prescriptions, results, and overall care.
Your GP can now refer you to a Neighbourhood Health Hub for things that need a wider team – for example:

  • Antifungal monitoring or blood tests

  • Lung-function or CT scans

  • Flare-up review by respiratory nurses

  • Fatigue or wellbeing support

🧑‍⚕️ The Neighbourhood Health Hub

You might go here instead of hospital for:

  • Same-day assessment of an infection or flare-up

  • Bloods, ECGs, or scans ordered by your GP

  • Physiotherapy, airway-clearance or rehabilitation

  • Medication reviews with a pharmacist

  • Appointments with dietitians or mental-health staff

  • Practical help from link workers (see below)

🚨 A&E (Emergency Department)

Still essential for serious problems such as:

  • Sudden or severe breathlessness not relieved by treatment

  • Coughing up blood

  • Chest pain, fainting, or collapse

  • High fever with confusion
    If unsure, call NHS 111 or 999 in an emergency.

🔁 When to use which service

Situation Who decides Where you’ll be seen
Routine check-up or repeat prescription You / GP GP surgery
Specialist review or complex medication GP / consultant Neighbourhood Hub
Mild flare-up needing same-day care NHS 111 / GP Hub or GP
Emergency or life-threatening symptoms NHS 111 / 999 A&E / hospital
Diagnostic tests GP / hospital referral Community Diagnostic Centre

All sites will share your digital care record so results and updates reach your GP and hospital team automatically.

🧑‍🤝‍🧑 Link workers and care coordinators – local help through your GP

Every GP practice and neighbourhood team now has link workers (also called care coordinators or social prescribers).
They’re there to help you navigate healthcare and community support. They can:

  • Arrange or advise on transport for appointments

  • Help complete travel cost reimbursement or benefit forms

  • Connect you with volunteer driver schemes or local charities

  • Find exercise, wellbeing, or peer-support groups

  • Support with fatigue, isolation, or anxiety

Ask your GP reception or Neighbourhood Hub to refer you to the link worker, or request a call-back via the NHS App.

🚗 Transport and accessibility

🚐 NHS Patient Transport Service (PTS)

If you can’t use public transport for medical reasons (for example, oxygen use, mobility difficulties, or severe fatigue), you may qualify for free NHS transport.
Your GP, link worker, or hospital can book this for you through the regional PTS (for example, NWAS in the North West).

💷 Healthcare Travel Costs Scheme (HTCS)

If you’re on a low income or certain benefits, you can reclaim travel expenses under the HTCS.
Bring your appointment letter and proof of eligibility, or ask your link worker to help with the form.

🚙 Community & volunteer transport

Each Integrated Care System (ICS) works with local councils and charities such as Age UK, Mind, or Good Neighbour schemes to run community minibuses and volunteer driver services.
Ask your link worker or hub team for local options.

🅿️ Accessibility

All new and refurbished hubs must include:

  • Blue Badge parking and drop-off zones

  • Wheelchair-friendly entrances and toilets

  • Seating and oxygen-safe waiting areas

  • Negotiated free or reduced parking in shared sites

🧭 At a glance

Issue What’s planned What to do now
Public transport Sites chosen to be local, but not always central Check routes before your visit
NHS Patient Transport Still available for medical need Ask GP or link worker to book
Travel-cost reimbursement Continue via HTCS Keep proof of benefit
Community / volunteer drivers Expanding under ICB–VCS partnerships Request info via link worker
Disabled parking / drop-off Required at new sites Confirm when booking

🪶 A message from the aspergillosis community

For many people with lung disease, “local care” only works if it’s accessible care.
Groups such as NAC CARES, Asthma + Lung UK, and Healthwatch are urging NHS leaders to:

  • Design transport and parking into every new site

  • Ask about mobility and oxygen needs when booking

  • Fund local volunteer schemes

  • Provide dedicated link workers at every hub and GP practice

If you struggle to reach appointments, tell your clinic or Healthwatch — your feedback shapes how services develop.

🧾 Questions to ask before your first visit

  1. 🚗 Is there Blue Badge or patient parking on site?

  2. 🚌 What public-transport links serve the hub?

  3. 🚐 Can the clinic arrange NHS Patient Transport?

  4. 💷 Can I claim travel costs under the HTCS scheme?

  5. ♿ Is the building accessible for wheelchairs or oxygen users?

  6. 💨 Are there rest areas for people who get breathless?

  7. 🧑‍🤝‍🧑 Can my carer or partner attend with me?

  8. 👩‍💼 Is there a link worker who can help with transport or forms?

  9. 🕓 Are there quiet waiting spaces to reduce infection risk?

Having these answers before your appointment makes your visit smoother and safer.

💬 Final thought

“Neighbourhood care” isn’t about replacing your GP or A&E — it’s about bridging the gap.
The new hubs aim to bring together your GP, hospital specialists, and community teams in one local setting, providing earlier help, fewer hospital journeys, and care designed around your life, not your postcode.

🔎 Behind the Headlines: Is this an NHS Expansion or a Shift?

Many people wonder whether this is new investment or a reshuffle of existing NHS services.

🧱 What’s really happening

  • The Neighbourhood Health Service is not a new tier of the NHS, but a redesign of how GP, hospital, and community teams work together.

  • The focus is on moving care out of hospitals and into local clinics, using the same staff and budgets more effectively.

  • Hospitals will still handle emergencies and complex cases, but routine tests, reviews, and education will move into the hubs.

⚖️ Expansion or movement?

Area Expansion Reorganisation
Buildings Some new or refurbished hubs and diagnostics centres Many reusing existing GP or community facilities
Staffing Some new link workers, pharmacists, and AHPs Most existing NHS staff redeployed across neighbourhoods
Funding £10m pilot investment + diagnostic capital No major long-term new funding yet announced
Patient benefit Easier access, joined-up records May reduce hospital appointments rather than add capacity

💬 What this means

For patients, it should feel like an expansion — more care, closer to home —
but in reality it’s a shift of where and how NHS services are delivered, not a large-scale increase in total NHS resources.

⚠️ Risks and opportunities

Opportunities Risks
Easier local access Risk of hospital clinics closing before hubs fully staffed
Joined-up records Depends on IT integration
Focus on prevention May feel like hospital services are being reduced
Better continuity Needs clear accountability (GP vs hub)

🧩 Summary

The new neighbourhood model is a reorganisation within the NHS, not a separate expansion.
It aims to use existing staff, buildings, and budgets more efficiently — giving patients with chronic conditions like aspergillosis and asthma easier access to care and support in their own communities.

by GAtherton

🌦️ Understanding Corticosteroid Mood Swings

Alison shared something that will resonate with many of us:

“Recognising that prednisone mood swings are very unpredictable is a good reminder as I feel like I am up and down so much of late. Yesterday’s swap to half hydrocortisone and half prednisone probably took a bit of adjusting too. Better day today though — I even got out to pick up my campervan that had been in for service. Felt really good to be driving it again and as the weather improves, I live in hope that I might get to use it this year!” 😊🤔

💭 Why mood can change on corticosteroids

Steroid medicines such as prednisone, prednisolone, and hydrocortisone affect many systems in the body — including brain chemistry.
When levels go up or down (for example when changing dose or type), it’s common to feel:

  • Irritable or anxious one day, low or tired the next

  • More emotional than usual — tears or frustration come quickly

  • Sleep disturbance, vivid dreams, or early waking

  • Short bursts of energy or restlessness, followed by a “crash”

These changes don’t mean you’re “losing control” — they reflect how sensitive the brain is to shifts in cortisol, the hormone steroids replace or supplement.

⚖️ Why switching between steroids can feel bumpy

Prednisone and hydrocortisone are both corticosteroids but have different potencies and timings:

Steroid Approx. equivalent dose (anti-inflammatory) Typical duration of action
Hydrocortisone 20 mg ≈ 5 mg prednisolone Short-acting (6–8 hours)
Prednisone/Prednisolone 5 mg Longer-acting (12–36 hours)

When switching or mixing them, the body’s rhythm of cortisol can temporarily feel off — like jet lag for your stress hormones. It often settles after a few days.

🌞 Tips that may help

  • Keep a simple mood or energy diary — it helps you and your clinician see patterns.

  • Take doses at consistent times, usually in the morning, unless advised otherwise.

  • Build in gentle activity or time outdoors — small wins, like Alison’s campervan trip, really lift mood.

  • Avoid caffeine or alcohol spikes if feeling restless or irritable.

  • Tell your clinician if mood swings are severe or prolonged — dose adjustment or slower tapering may help.

💬 In Alison’s words

“Better day today.”
Sometimes that’s the victory — one step, one better day, one bit of normality returning.

by GAtherton

🌿 Covid-19 and ABPA / Bronchiectasis: What Patients Need to Know

Many patients with ABPA, bronchiectasis, and asthma ask:

“If I test positive for Covid, am I at higher risk, and do I need antivirals or steroids?”
“Is Covid still a dangerous infection now that everyone has had it many times?”

Here’s what’s important right now.

🎯 Why you may be at higher risk

Having ABPA, bronchiectasis, or asthma doesn’t guarantee severe illness, but it does put you at higher risk compared to the average healthy adult. This means you are more likely to experience:

  1. More severe Covid illness – infections can trigger worse chest symptoms (wheeze, shortness of breath, cough).

  2. Secondary infections – bronchiectasis makes it easier for bacteria to grow in mucus after a viral infection.

  3. Flares of existing disease – Covid can set off asthma attacks or ABPA flare-ups.

  4. Slower recovery – fatigue, breathlessness, and extra sputum can last longer.

⚠️ Important: “Higher risk” does not mean you will definitely become very unwell. Many people with chronic lung disease still have mild Covid and recover fully at home.

✅ Current Covid treatments in the UK (2025)

  1. Antivirals / monoclonal antibodies

    • People with conditions like ABPA, bronchiectasis, or severe asthma may be eligible for medicines such as Paxlovid or Molnupiravir.

    • These must usually be started within 5 days of symptoms or a positive test.

    • Access is through the NHS Covid Medicines Delivery Unit (CMDU), often arranged via NHS 111 or your GP.

  2. Steroids

    • Oral steroids (prednisolone) are not routinely given for Covid unless oxygen levels drop, or you already take them for your lung condition.

    • If your asthma/ABPA flares, follow your specialist’s guidance on when to start rescue steroids.

  3. Antibiotics

    • Covid is viral, so antibiotics don’t treat it directly.

    • But if your doctor suspects a bacterial infection (e.g. in bronchiectasis), they may prescribe something like doxycycline.

🧾 Practical steps if you test positive

  • Call NHS 111 or your GP: Tell them you have ABPA/bronchiectasis/asthma and ask about referral for antivirals.

  • Monitor symptoms closely:

    • Use a pulse oximeter if you have one (seek help if oxygen ≤94%).

    • Watch for worsening breathlessness, chest pain, or confusion.

  • Keep safe at home: Ventilate rooms, use masks if possible, and wash hands often — though once exposed, focus mainly on monitoring and treatment.

🚨 When to seek urgent help

  • Severe shortness of breath

  • Oxygen levels ≤92–94%

  • Chest pain, confusion, or sudden collapse
    → Call 999

❓ Is Covid still dangerous in 2025?

Why it feels less dangerous now

  • Vaccination and immunity: Most people have had jabs and multiple infections, so later bouts are usually milder.

  • Variants: Current strains spread more easily but often cause less pneumonia than the original virus.

  • Better treatments: Antivirals and steroids (when needed) are widely available.

Why it can still be dangerous

  • Vulnerable groups: People with lung disease, weakened immunity, or older age are still more likely to need hospital care.

  • Exacerbations: Even mild Covid can set off asthma or ABPA flares, or worsen bronchiectasis infections.

  • Long Covid: Some people continue to develop fatigue, breathlessness, or brain fog lasting weeks to months.

  • Hospital admissions: Lower than during the pandemic, but NHS hospitals still see severe cases every winter.

👉 In summary: For most healthy people, Covid now feels like a bad cold or flu. For people with ABPA, bronchiectasis, or severe asthma, it can still be a dangerous infection — which is why monitoring and access to antivirals remain important.

✅ Key message

With ABPA and bronchiectasis, you are more vulnerable to complications from Covid. Most people still recover at home, but you may be eligible for antivirals. Steroids are only used if your underlying condition flares or if your oxygen drops. Stay alert, act quickly if symptoms worsen, and reach out for NHS support as soon as you test positive.

by GAtherton

🌿 Coping with Exhaustion When Tapering Prednisolone

Coming off prednisolone can leave you feeling unusually tired. This happens because:

  • Your body’s own adrenal glands have been “asleep” while steroids did the work.

  • As the dose drops, your body needs time to start making its own cortisol again.

  • Tiredness and low energy are the most common symptoms during this adjustment.

✅ Tips that may help

1. Pace yourself

  • Don’t expect full energy straight away.

  • Break tasks into smaller chunks, with rests in between.

  • Use a “little and often” approach for activities.

2. Prioritise rest and sleep

  • Listen to your body: extra rest is part of recovery, not weakness.

  • Try to keep a regular bedtime routine to support natural hormone rhythms.

3. Gentle movement

  • Light activity (walking, stretching) can actually boost energy and mood.

  • Avoid pushing too hard — overexertion can worsen fatigue.

4. Balanced diet

  • Aim for regular meals with protein, whole grains, fruit/veg.

  • Stay hydrated — dehydration makes fatigue worse.

  • Limit caffeine or sugar “quick fixes” that lead to energy crashes.

5. Monitor stress

  • Emotional stress increases your body’s demand for cortisol.

  • Try calming activities: breathing exercises, mindfulness, or gentle hobbies.

6. Stay in touch with your team

  • If exhaustion is severe, worsening, or you develop dizziness, faintness, low blood pressure, or nausea → contact your doctor urgently.

  • These can be signs your body is struggling with adrenal insufficiency, and your taper may need adjusting.

⚠️ Important reminders

  • Never stop prednisolone suddenly unless your doctor tells you to.

  • Carry a steroid card or alert bracelet if you are tapering — in case of emergencies.

  • If you get unwell (infection, surgery, severe stress), you may temporarily need a higher steroid dose.

👉 Key message:
Tiredness during tapering is very common. Self-care, pacing, and staying in close contact with your healthcare team can help you get through this phase more smoothly.

by GAtherton

🧾 A Patient’s Guide: How to Raise Concerns About Possible Vitamin or Mineral Deficiencies

🌱 Why this matters

People with chronic lung conditions such as aspergillosis, asthma, bronchiectasis, or ABPA often feel fatigued, weak, or run down. Sometimes these symptoms are partly caused by a vitamin or mineral deficiency (e.g. iron, vitamin D, B12). But testing is not automatically offered in the NHS unless there are clear reasons.

Knowing how to raise the concern makes it more likely your GP will take it seriously and order the right tests.

🩺 Why GPs won’t “just run a full panel of tests”

  • Cost and resources: Lab tests are expensive. Panels covering 10+ nutrients aren’t routinely funded.

  • Evidence-based practice: Guidelines (like NICE) advise testing only if there’s a clear clinical reason — not just curiosity.

  • Safety: Too much of certain vitamins (like iron or vitamin D in sarcoidosis) can be harmful if taken unnecessarily.

So rather than asking for “a panel,” it’s best to highlight specific risks or symptoms.

🔍 How to suggest you may have a deficiency

  1. Link to your symptoms

    • Fatigue, pale skin, shortness of breath → ferritin (iron)

    • Muscle weakness, bone pain → vitamin D & calcium

    • Tingling, memory issues → B12 & folate

    • Frequent infections → vitamin D, iron, zinc (though zinc is rarely tested on the NHS)

  2. Refer to your condition or treatment

    • Steroid use: raises risk of osteoporosis → vitamin D & calcium testing often justified.

    • Antifungal medication: can affect liver function & absorption → may influence nutrient status.

    • Sarcoidosis: special caution with vitamin D → specialist testing sometimes needed.

    • Kidney/liver disease: changes how nutrients are processed.

  3. Use guideline evidence

    • NICE, BNFC or patient charities often recommend when a test is justified.

    • Bringing a leaflet (e.g. SarcoidosisUK on vitamin D) can support your case.

  4. Frame it as safety, not curiosity

    • Instead of “I’d like a full vitamin panel,” try:
      “I’ve had ongoing fatigue and a self-test showed my ferritin was low. NICE guidelines mention testing ferritin in these situations. Could we check that?”

🛒 What about over-the-counter (OTC) tests?

You can buy some blood spot kits privately from Boots, Superdrug, or online (Thriva, Medichecks, Forth). These can give helpful information — but they’re not a replacement for GP care.

Test Available OTC? Notes
Ferritin (Iron stores) ✅ Widely available Good first check if you have fatigue or anaemia risk.
Vitamin D (25-hydroxy) ✅ Widely available Most popular; bone/muscle health.
Vitamin B12 / Folate ✅ Available online Useful if you have fatigue, memory issues, neuropathy.
Magnesium, Zinc, Selenium ⚠️ Some private labs only More expensive; less reliable finger-prick accuracy.
Omega-3 index ⚠️ Niche Measures fatty acid balance.
Calcium ❌ Not OTC Needs venous blood in hospital.
Active vitamin D (1,25-dihydroxy) ❌ Not OTC Needed in sarcoidosis; specialist only.

⚠️ Important:

  • OTC kits vary in quality; stick to UKAS-accredited labs.

  • GPs may not act on private results unless they cross NHS thresholds.

  • Self-supplementing without medical oversight can be risky — e.g. iron overload, or vitamin D worsening sarcoidosis.

⚖️ Why this approach matters

  • Helps your GP match your request to clinical guidelines.

  • Reduces the chance of being dismissed as “just worried.”

  • Protects you from the risks of self-supplementing without knowing your true levels.

✅ Key Takeaways

  • Don’t ask for “everything” — focus on the nutrients most relevant to your condition, treatment, and symptoms.

  • Use published guidance or patient resources to back up your request.

  • OTC tests exist for iron, vitamin D, and B12, but they’re not a substitute for GP advice.

  • Testing is about patient safety (avoiding both deficiency and harm from unnecessary supplements).

by GAtherton

Winter 2025–26: Flu & Other Respiratory Viruses. Bad Flu Season coming?

Information for people living with aspergillosis (ABPA, CPA and related conditions)

What the evidence says right now

Signals pointing to a tougher flu season

  • Southern Hemisphere “preview.” Australia saw higher-than-usual flu notifications in early 2025 compared with 2024, which often foreshadows a busier winter in the UK and Europe. That doesn’t guarantee the same for us, but it’s a warning sign. ausvaxsafety.org.au

    • By September 2025 the numbers of cases in Australia had reached similar levels to those seen in 2024 www.health.gov.au

  • Co-circulation of viruses. In recent winters, influenza, RSV and COVID-19 have circulated together, increasing pressure on people at risk and on health services. WHO continues to flag this pattern in seasonal updates. World Health Organization

  • UK picture (late Sept 2025). UKHSA reports flu and COVID-19 at baseline/low levels for now. Activity can rise quickly as weather cools and schools/universities return. GOV.UK

  • Vaccine effectiveness (VE). Last season’s European interim VE against influenza A was ~32–53%, which is moderate—helpful at preventing severe illness and hospitalisation, especially in higher-risk groups. Effectiveness varies by age, strain and match. PMC

  • Timing. After Southern Hemisphere signals and based on past seasons, an earlier start (late Oct–Nov) with a Dec–Jan peak is plausible, though not certain. Local surveillance will confirm if that pattern emerges.

Why forecasts are uncertain (and what can improve outcomes)

  • Vaccine uptake. Higher uptake = smaller peaks and fewer hospitalisations. GOV.UK

  • Strain match. If circulating strains stay close to vaccine strains, protection is better; drift reduces it. PMC

  • Public behaviour. Ventilation, masks in crowded indoor spaces, and staying home when unwell still reduce spread. NHS Covid

  • Population immunity & health-system readiness. Recent infections and prior vaccines help; NHS readiness also matters.

What this means if you have aspergillosis

People with ABPA/CPA or bronchiectasis can have more severe or longer-lasting symptoms from flu, RSV, or COVID-19. Practical steps:

  • Get your vaccines when invited.

    • Flu vaccine (annual) and the autumn COVID-19 dose if you’re eligible. These don’t eliminate risk but reduce severe illness and hospitalisation. Flu  Covid

  • Act early if you become unwell.

    • Watch for fever, sore throat, cough, breathlessness, increased sputum, chest pain, or a fall in home SpO₂. NHS Covid  NHS Flu

    • Seek medical advice promptly—early antivirals (for COVID-19, and occasionally for flu in high-risk people) are time-sensitive.

  • Keep your baseline care tight.

    • Continue airway clearance, inhalers/other prescribed medicines, and your personalised action plan.

    • Ask about a rescue plan (who to call, when to test, when to increase treatments).

  • Reduce exposure where you can.

    • Improve ventilation, avoid poorly ventilated crowded spaces during peaks, consider masking indoors when rates rise, and hand hygiene.

Bottom line

  • Many experts anticipate a busier-than-average flu season in the UK/Europe this winter, but outcomes are not fixed. What we each do—vaccination, early help if ill, and sensible precautions—can make a big difference.

by GAtherton

🧾 Vitamins & Minerals in Aspergillosis: What Patients Should Know

Living with aspergillosis (ABPA, CPA or other forms) and its treatments can affect your body’s levels of certain vitamins and minerals. Some of these nutrients are important for bone strength, energy, and the immune system.

But ⚠️ taking supplements without advice can be harmful. Always check with your doctor or specialist team before buying or using vitamins or minerals.

🌟 Common Deficiencies in Aspergillosis

1. Vitamin D & Calcium

  • Why important: Strong bones, healthy immune system.

  • Why low: Long-term steroids and less sunlight.

  • Problems if low: Weak bones, higher risk of fractures, tiredness.

  • ⚠️ Too much can cause kidney damage — only take on medical advice.

2. Magnesium

  • Why important: Muscle strength, energy, nerve function.

  • Why low: Some antifungal or reflux medicines reduce levels.

  • Problems if low: Muscle cramps, weakness, tiredness.

  • ⚠️ High doses can upset the heart and kidneys — medical supervision is essential.

3. Iron

  • Why important: Carries oxygen in the blood.

  • Why low: Chronic illness, poor appetite, blood loss.

  • Problems if low: Tiredness, breathlessness, pale skin.

  • ⚠️ Aspergillus uses iron to grow — taking iron when you don’t need it can make infection worse.

4. Zinc

  • Why important: Healing, immunity, skin health.

  • Why low: Chronic illness or poor diet.

  • Problems if low: Slow wound healing, infections, taste changes.

  • ⚠️ High zinc can block copper absorption and damage health.

5. B Vitamins (B12, Folate, B6)

  • Why important: Energy, blood health, nerve function.

  • Why low: Poor absorption, weight loss, some medicines.

  • Problems if low: Fatigue, pins and needles, anemia.

  • ⚠️ Over-supplementation can also cause problems — needs testing first.

6. Vitamin A

  • Why important: Keeps lung lining healthy.

  • Why low: Poor diet, chronic illness.

  • Problems if low: Weaker lung defences, more infections.

  • ⚠️ Too much vitamin A can be toxic (especially to the liver).

7. Vitamin K

  • Why important: Normal blood clotting.

  • Why low: Gut bacteria disruption from antibiotics/antifungals.

  • Problems if low: Easy bruising, bleeding gums, nosebleeds.

  • ⚠️ Vitamin K can interfere with warfarin and other blood thinners.

🩺 Safe Steps for Patients

  • ✅ Ask your doctor about vitamin D and calcium checks (especially if on steroids).

  • ✅ Routine blood tests can check iron, B12, folate, magnesium, zinc.

  • ✅ Take supplements only if prescribed — many interact with antifungal medicines.

  • ✅ Don’t buy “high-dose” vitamins or minerals online or in shops without advice.

  • ✅ Ask your team about a dietitian referral if you are struggling with appetite or weight.

  • ✅ Bone scans (DEXA) may be needed to monitor steroid-related bone loss.

📌 Key message

People with aspergillosis are more likely to have low levels of vitamin D, calcium, magnesium, iron, zinc, and B vitamins.
These can affect your energy, bones, and immune system.
👉 Supplements can help — but only when checked, prescribed, and monitored by your healthcare team.

by GAtherton

🌟 Biologics and the Future: A Toolkit for Severe Asthma, ABPA & Beyond

Many people with severe asthma or Allergic Bronchopulmonary Aspergillosis (ABPA) now have access to biologic medicines — treatments that block very specific signals in the immune system. For some, the results can feel miraculous. For others, the effect may fade or never fully take hold. But the exciting news is that science is building a toolkit of biologics that can be matched more closely to each person.

✨ Why biologics sometimes stop working

  • Biologics like tezepelumab (which blocks TSLP) can give dramatic improvements, but in some people the benefit doesn’t last.

  • That may be because the immune system “switches pathways” — other signals (like IL-5 or IL-13) start to dominate.

  • It doesn’t mean treatment is over — it means we need to try a different tool in the kit.

🧰 The current toolkit

Each biologic blocks a different “messenger” (called cytokines) in the immune system:

  • IgE blocker (omalizumab): helps in allergy-driven asthma/ABPA.

  • IL-5 / IL-5R blockers (mepolizumab, benralizumab, reslizumab, and soon depemokimab): reduce eosinophils (a type of white blood cell) that cause inflammation.

  • IL-4 / IL-13 blocker (dupilumab): controls type-2 inflammation, also helpful in eczema and nasal polyps.

  • TSLP blocker (tezepelumab): targets an “alarmin” high up in the pathway, useful across many asthma types.

  • IL-33 blockers (in development): another upstream “alarmin” that could help in the future.

🚀 What’s new and coming soon

  • Depemokimab: a long-acting IL-5 treatment, given only twice a year.

  • Inhaled anti-TSLP: same target as tezepelumab, but in inhaler form.

  • IL-33 blockers: still experimental, but promising because IL-33 is involved in fungal allergy and ABPA.

💡 What this means for ABPA

  • ABPA involves allergy (IgE), eosinophils (IL-5), and other signals like IL-33.

  • That’s why some patients respond to omalizumab, others to mepolizumab/benralizumab, others to dupilumab, and some to tezepelumab.

  • In the future, doctors may be able to choose the exact biologic (or even combination) that best matches your immune profile — just like targeted cancer treatments today.

🧩 The Biologic Toolkit (summary table)

Target Signal Biologics How it Helps Relevance to ABPA
IgE (allergy antibody) Omalizumab Calms allergic reactions Useful when IgE is high and fungus/allergy is a trigger
IL-5 / IL-5R (eosinophils) Mepolizumab, Benralizumab, Reslizumab, Depemokimab (6-monthly) Reduces eosinophils that damage lungs Helpful in many ABPA patients with high eosinophils
IL-4 / IL-13 (type-2 inflammation) Dupilumab Reduces mucus, inflammation, and steroid need Good in patients with eczema or nasal polyps alongside ABPA
TSLP (alarmin, upstream trigger) Tezepelumab, Inhaled anti-TSLP (in trials) Blocks an “early alarm” that activates many asthma pathways Early evidence: big improvements in some ABPA patients
IL-33 / ST2 (alarmin) Itepekimab, Astegolimab (in development) Switches off another early “danger signal” IL-33 is strongly linked to fungal allergy → promising for ABPA

🫁 COPD, Bronchiectasis & Mucus Plugging

  • COPD: Some biologics (like anti-IL-5) show benefit in patients with high eosinophils, and IL-33 blockers are being tested. Not yet routine NHS use.

  • Bronchiectasis: Biologics mainly help when asthma/ABPA overlap is present. Airway infections remain the bigger challenge.

  • Mucus plugging: Dupilumab can reduce mucus production. Other biologics may help indirectly, but airway clearance techniques remain essential.

💷 Why new medicines are expensive

  • Developing a new drug takes 10–15 years and can cost over £1 billion.

  • Most drugs fail — profits from a few successes must cover all the failures.

  • Patents give companies a period of exclusivity to recover costs, after which cheaper copies (generics or biosimilars) appear.

📊 Open market vs NHS

  • In the US (open market), companies set prices, and insurers or patients decide if they can pay → faster access, but very high costs and inequality.

  • In the UK (NHS), the system is funded by taxpayers. NICE weighs up cost vs benefit before approving drugs → slower access sometimes, but once approved, everyone gets it fairly.

🧬 Rare diseases and fungal infections

  • For rare diseases like ABPA and CPA, the market is too small to attract big pharma on profit alone.

  • Organisations like GAFFI (Global Action for Fungal Infections) and DNDi (Drugs for Neglected Diseases initiative) work with universities, charities, and governments to develop antifungals.

  • Examples:

    • Olorofim (F2G, UK biotech): a brand-new antifungal class, developed with public and charity support.

    • Rezafungin: a long-acting antifungal supported by government and public funding.

  • Without these partnership models, fungal drugs for ABPA/CPA would likely not exist.

🌈 The takeaway

  • Biologics are transforming treatment for asthma and ABPA — and new ones are coming.

  • If one biologic doesn’t work, others may.

  • COPD, bronchiectasis, and mucus plugging may also benefit in future.

  • New drugs are costly to develop, but the NHS negotiates to keep access fair.

  • For rare diseases like ABPA/CPA, partnerships and advocacy are crucial to get new drugs developed at all.

 

📖 Glossary of Acronyms

ABPA – Allergic Bronchopulmonary Aspergillosis
A lung condition caused by allergy to Aspergillus fungus, leading to inflammation, mucus plugging, and lung damage.

CPA – Chronic Pulmonary Aspergillosis
A long-term lung infection with Aspergillus fungus, usually in people with existing lung disease.

COPD – Chronic Obstructive Pulmonary Disease
A group of lung conditions (like chronic bronchitis and emphysema) that cause breathing difficulties.

NHS – National Health Service
The publicly funded healthcare system in the UK.

NICE – National Institute for Health and Care Excellence
The body that decides which treatments the NHS should fund, based on cost and benefit.

QALY – Quality-Adjusted Life Year
A way of measuring the benefit of a treatment: how much it improves both the length and quality of life.

IL – Interleukin
A type of messenger protein (cytokine) used by the immune system to trigger inflammation. Different ILs have numbers (IL-4, IL-5, IL-13, IL-33).

IgE – Immunoglobulin E
An antibody linked to allergies. Very high IgE levels are common in asthma and ABPA.

TSLP – Thymic Stromal Lymphopoietin
An “alarmin” (early danger signal) that tells the immune system to start reacting. Blocked by tezepelumab.

ST2 – Suppression of Tumorigenicity 2
The receptor for IL-33. Drugs like astegolimab block this pathway.

GAFFI – Global Action For Fungal Infections
A non-profit organisation pushing for better care, awareness, and research into fungal disease.

DNDi – Drugs for Neglected Diseases initiative
An international group that develops treatments for rare or overlooked diseases (including fungal infections).

EAMS – Early Access to Medicines Scheme
A UK programme that allows patients to use promising medicines before full approval.

FDA / EMA / MHRA – Food and Drug Administration (US) / European Medicines Agency (EU) / Medicines and Healthcare products Regulatory Agency (UK)
The agencies that approve and regulate medicines.

by GAtherton

Steroid Use and Your Eyesight: What Patients Need to Know

Steroids (such as prednisolone, inhaled corticosteroids, eye drops, or steroid injections) are important medicines for conditions like asthma, allergic bronchopulmonary aspergillosis (ABPA), and other inflammatory illnesses. But they can also affect your eyesight — sometimes in subtle ways day-to-day, and sometimes with long-term risks.

This guide explains what may happen, why vision can fluctuate, and what you can do to protect your eyes.

How steroids can affect the eyes

  • Cataracts
    Long-term steroids may cause a type of cataract at the back of the lens (posterior subcapsular). This can cause glare, blurred vision, or difficulty seeing in bright light.

  • Glaucoma (raised eye pressure)
    Steroids can increase pressure inside the eye, potentially damaging the optic nerve if untreated. This is more common with steroid eye drops, but tablets and inhalers can also contribute.

  • Central Serous Retinopathy (CSR)
    Fluid may build up under the retina, causing blurred or distorted central vision. Usually reversible when steroids are reduced or stopped, but it can recur.

  • Blood sugar and fluid changes
    Steroids raise blood sugar and shift body fluids. This can temporarily alter the eye lens, making vision sharper one day and blurrier the next.

  • Delayed healing and infection risk
    Steroids can make eye infections worse or delay healing after injury or surgery.

Why vision changes from day to day

Some patients notice that their glasses seem to “work” differently depending on their steroid dose. Reasons include:

  • Time of day: Vision may blur a few hours after taking a dose, when steroid levels peak.

  • Dose level: Higher doses cause more fluctuation; tapering can also make vision variable.

  • Delivery method:

    • Tablets: most likely to cause daily swings.

    • Eye drops: may raise eye pressure within hours.

    • Inhalers: usually small risk, unless high dose over many years.

  • Other factors in asthma/aspergillosis: Nebulisers, oxygen, antifungal medicines (like voriconazole), fatigue, and infections can all add to vision changes.

What patients can do

Day-to-day management

  • Drink plenty of water to help with fluid balance.

  • Eat regularly and limit sugary snacks to reduce blood sugar swings.

  • Use good lighting and take regular breaks from close work.

  • Try to take steroids at the same time each day for more predictable effects.

  • Keep a diary of when blurred vision happens in relation to your dose.

Eye care

  • Tell your optician and GP you are on long-term steroids.

  • Ask for regular eye checks (pressure and cataract screening every 6–12 months).

  • Don’t rush to buy new glasses if your prescription seems to keep changing — vision often settles once steroid doses stabilise.

  • Lubricating eye drops can help if dryness is a problem.

When to seek urgent help

  • Sudden or severe blurred vision

  • Dark spots, flashing lights, or distorted shapes

  • Eye pain, halos around lights, or redness

  • Rapid worsening of eyesight

These could be signs of glaucoma, cataract progression, or retinal changes and need prompt medical attention.

Key message

Not everyone on steroids will notice eyesight problems, but it is a well-recognised side effect. The changes are often temporary and reversible, especially the day-to-day fluctuations, but long-term use does carry risks.

By being aware, monitoring regularly, and working with both your doctor and optician, you can catch problems early and protect your sight.

by GAtherton