âś… Best Practice for Taking Blood Pressure at Home

Taking BP at home can be very helpful, but only if it's done correctly and consistently. Here's how to make sure the readings are accurate and meaningful:

1. Use a Validated BP Monitor

  • Choose an upper arm cuff, not a wrist or finger monitor.

  • Make sure the cuff is the right size for the arm (not too tight or loose).

  • Devices that are clinically validated (e.g., British and Irish Hypertension Society, BHF or NICE recommended) are best.

2. Timing Matters

  • Take readings at the same time(s) each day — typically:

    • Morning (before meds, breakfast, and activity)

    • Evening (before bed)

  • If taking just once daily, do it in the morning.

3. Prepare Properly:

  • Sit quietly for 5 minutes before measuring.

  • No coffee, smoking, or exercise for 30 minutes beforehand.

  • Sit upright, back supported, feet flat on the floor (no crossing legs).

  • Rest the arm on a table at heart level.

  • Be calm and quiet (no talking or watching TV).

4. How to Measure:

  • Take 2 readings, 1 minute apart.

  • If they’re very different, take a 3rd and record the average of the closest two.

5. Record the Results:

  • Keep a written or digital log (eg. Blood_Pressure_Diary):

    • Date & time

    • Reading (systolic/diastolic)

    • Pulse

    • Any symptoms (e.g. dizzy, headache, breathless)

Example:

Tue 8:00am – 132/78, pulse 72 – Felt fine

âť— Extra Tips for Reliable Results:

  • Avoid taking BP when in pain or upset — it can falsely elevate the reading.

  • Don’t obsessively repeat it all day (this can cause "white coat at home" effect).

  • Show the log to the GP/consultant — ideally with at least 5–7 days of morning & evening readings.

by GAtherton

“What I Wish Every Doctor Knew About Aspergillosis”

A quick guide for junior doctors and general clinicians from patients living with Aspergillus-related conditions.

🦠 1. Aspergillus Isn’t Rare – It’s Just Underdiagnosed

  • Aspergillus is everywhere — in air, soil, compost, buildings.

  • For people with asthma, bronchiectasis, COPD, TB damage, or immune issues, it can cause serious illness.

  • ABPA, CPA, SAFS, and invasive aspergillosis are all real, distinct, and increasingly recognised conditions.

🧩 If a patient has persistent cough, breathlessness, mucus, or lung cavities — consider fungal disease.

🔬 2. The Right Tests Make All the Difference

When symptoms don’t improve or don’t match classic asthma/COPD patterns, ask for:

  • Aspergillus-specific IgE

  • Total IgE

  • Aspergillus IgG

  • Sputum culture & fungal PCR

  • HRCT chest (not just plain X-ray)

These tests are often missed unless someone thinks of them. Many patients go undiagnosed for years.

💊 3. Standard Inhalers Don’t Help Much – And Sometimes Make It Worse

  • Patients may not respond well to bronchodilators or inhaled steroids alone.

  • Fungal disease may need:

    • Oral corticosteroids (ABPA)

    • Antifungals (itraconazole, voriconazole, etc.)

    • Physiotherapy and airway clearance

    • Long-term follow-up

Think beyond asthma — especially when patients say their treatment isn’t working.

🧭 4. Aspergillosis Doesn’t Only Flare in Autumn

  • Symptoms can worsen any time of year.

  • Triggers include damp housing, indoor mold, infections, and environmental exposure.

  • Delaying treatment because it’s “not autumn” can be dangerous.

🧠 5. Listen to Patients – They Often Know Their Condition Better Than Anyone

  • Many of us have lived with this for years and have been misdiagnosed or dismissed before.

  • We aren’t trying to self-diagnose — we’re trying to help you help us.

Respecting lived experience builds trust and improves care.

🏥 6. The National Aspergillosis Centre (NAC) in Manchester Exists

  • If you're unsure how to proceed, they are a world-leading centre of expertise.

  • They support patients across the UK and provide diagnostic advice and treatment plans.

  • Consider reviewing any clinic letters from NAC or contacting them for guidance.

  • National Aspergillosis Centre - Wythenshawe Hospital

📄 Optional “One-liner” for Doctors to Note:

“Consider Aspergillus-related lung disease in patients with chronic respiratory symptoms and underlying airway disease, particularly when symptoms are recurrent, severe, or unresponsive to standard therapy.”

by GAtherton

Harnessing the Power of a Symptom Diary: A Guide to Better Health Management.

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Managing a chronic condition can be a challenging journey filled with uncertainties. However, there is a tool that can help patients take control of their condition and help them understand potential triggers and how lifestyle factors may impact their condition.  This tool comes in the form of a symptom diary, a personal record that tracks information relevant to the patient, such as symptoms, ad hoc medication usage, exacerbations, food intake and activities. 

Key benefits are:

  • Empowerment and control are at the core of why keeping a symptom diary is beneficial. It offers individuals a sense of ownership over their health, allowing them to monitor and manage their condition, rather than feeling overwhelmed by it. This proactive approach is not only beneficial for the patient's sense of well-being but also contributes to research and future planning. Documenting symptoms can help better understand the condition, aiding not just the individual but also the broader community by contributing valuable insights into chronic illness management.

 

  • Another benefit of maintaining a symptom diary is its ability to foster improved communication between patients and their medical teams. By providing a detailed account of symptoms and their impacts, a diary ensures that important information is communicated effectively, allowing for a focused discussion during appointments. This enhanced communication can lead to more informed and focused care, concentrating on what truly matters to the patient's health and well-being.

 

  • Beyond facilitating better dialogue, a symptom diary promotes self-awareness through monitoring and reflection, patients may notice patterns in their symptoms, identifying what exacerbates or alleviates their condition. This awareness is crucial in managing chronic illnesses like aspergillosis, as it empowers patients to make informed decisions about their health.

 

  • A symptom diary can also play a role in developing personalised treatment plans. Each entry can help the clinical team better understand the patient's condition, enabling in some circumstances the creation of a treatment strategy that is as unique as the individual. This tailored approach can improve health outcomes, making a difference in the patient's quality of life.

Starting a symptom diary involves a few key practices: maintaining consistency in entries, attention to detail, and regularly reviewing the diary to identify trends or changes. What to record in a diary includes the date and time of each entry, detailed symptoms, ad hoc medication usage, environmental exposures, dietary intake, physical activity, mental health, and sleep quality. 

In conclusion, a symptom diary is a powerful tool in managing chronic conditions, offering benefits such as improved communication with healthcare providers, increased self-awareness, empowerment, and the facilitation of personalised treatment plans. By taking control of their health information, individuals can navigate their journey with confidence and clarity, paving the way for a better quality of life.
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by Lauren Amphlett

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

  1. Acknowledgement: You should anticipate an acknowledgement and an offer for a discussion regarding handling your complaint within three working days.
  2. 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.
  3. 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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by Lauren Amphlett

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 ÂŁ240 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. 

What can you expect from a good GP practice: A handy guide published by the Care Quality Commission (CQC) is available here. 


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by Lauren Amphlett

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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by GAtherton

How to exercise with aspergillosis

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Recording from 29 April 2021, when our specialist physiotherapist Phil Langridge gave a talk to our aspergillosis patient and carers support group on exercise.

-----Contents of video----

-----Contents of video----

  • 00:00​ Intro
  • 04:38​ Exercise, physical activity and fitness
  • 06:59​ Why should we exercise
  • 09:51​ Why don't we exercise
  • 18:14​ Goals
  • 29:37​ Success measures
  • 32:09​ Where to access help
  • 37:03​ Progressing exercise
  • 44:21​ Pain and exercise
  • 47:33​ Resources
  • 48:16​ Q&A

Further resources:

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by Lauren Amphlett