How to Raise Concerns about your NHS care How to Raise Concerns About NHS Care: A Guide for People with Adrenal Insufficiency If you or a loved one with adrenal insufficiency are concerned that you are experiencing, or have experienced inadequate or unsafe care in the NHS, it’s important to know that you have the right to raise immediate concerns at the time (via Martha's Rule) or to make a complaint (after the event). This guide will help you understand the process, stay empowered, and access support. Why Complaints Matter: People with rare and invisible conditions like adrenal insufficiency are sometimes misunderstood or overlooked in healthcare settings. This can be distressing and even dangerous. Speaking up helps improve care — not just for you, but for others too. What is Martha's Rule? How to Use Martha’s Rule How to Make a Complaint The Patient Advice and Liaison Service (PALS) How MPs Can Help with NHS Complaints The Emotional Impact of making a complaint FAQs Useful Links Martha’s Rule: A Lifeline for Patients with Adrenal Insufficiency in England What is Martha's Rule? Martha’s Rule is a patient safety initiative that allows patients, families, and carers to request an urgent clinical review from a different team if they feel someone’s condition is worsening and their concerns are not being heard. It was introduced across NHS hospitals in response to the tragic death of 13-year-old Martha Mills in 2021. Martha developed sepsis while in hospital, but despite her parents repeatedly raising concerns about her deteriorating condition, those concerns were not acted upon. Her parents, Merope Mills and Paul Laity, campaigned for change so that no other family would be left powerless in a similar situation. Key Goals of Martha’s Rule: Empower families and patients to escalate concerns without needing medical knowledge. Ensure timely intervention when a patient’s condition deteriorates. Promote open communication between care teams and families. Prevent avoidable harm by formalising access to second opinions. Since its rollout, thousands of calls have been made under Martha’s Rule, leading to hundreds of potentially life-saving changes in care Martha’s Rule empowers patients, families, and carers to request a rapid clinical review if they feel someone’s condition is deteriorating and their concerns aren’t being addressed. Why It Matters for Adrenal Insufficiency Addison's disease and adrenal insufficiency are rare conditions that are not always easy to diagnose, and that health care professionals, particularly those outside of the endocrinology specialisms, might not be aware of, or might have little experience of dealing with. People with all types of adrenal insufficiency require a time critical steroid replacement medication regimen, including the adjustment of their glucocorticoid dosage when they are under physical or severe emotional stress (Sick Day Rules). If they experience low cortisol, they are at risk of adrenal crisis, a life-threatening emergency that requires time critical administration of hydrocortisone. Adrenal crisis can present with vague symptoms like fatigue, nausea or confusion, which may be missed or misinterpreted, particularly in busy hospital settings. Martha’s Rule gives you the right to escalate concerns—even if staff seem unconcerned. How to Use Martha’s Rule Recognise the signs If you or someone you care for has adrenal insufficiency, be alert to: Sudden fatigue or weakness Dizziness or low blood pressure Nausea, vomiting, or abdominal pain Confusion or altered consciousness These may signal an adrenal crisis. Trust your instincts. Raise Concerns with the Care Team Speak to the nurse or doctor in charge. Clearly state:“I’m worried this could be an adrenal crisis. Can we escalate care?” If you feel dismissed or the response is inadequate, proceed to step 3. Request a Rapid Review via Martha’s Rule Hospitals implementing Martha’s Rule will have clear signage or leaflets explaining how to request a review from a different clinical team. This might involve: Calling a dedicated phone number Speaking to a Patient Liaison or Safety Officer Using a ward-based escalation protocol You do not need medical knowledge—just a genuine concern. Tips for Patients and Carers Carry a Steroid Emergency Card and ensure it’s visible to staff. Document symptoms and timeline to support your concerns. Be persistent but respectful—you are advocating for safety. Know your rights: Martha’s Rule is designed to support you, not to challenge staff. NHS England: Martha’s Rule Information for Patients What about Scotland, Wales and Northern Ireland? Scotland Scotland has piloted local schemes similar to Martha’s Rule. While there isn’t a nationwide rollout yet, some hospitals have adopted systems that allow patients and families to escalate concerns about deteriorating conditions. These are inspired by models like Call 4 Concern, which had previously been trialled in the UK Wales Wales has taken concrete steps toward implementing Martha’s Rule-like systems. For example, Ysbyty Gwynedd Hospital in Bangor launched the Call 4 Concern service in April 2023. This allows patients, relatives, or friends to contact the Critical Care Outreach Team directly via the hospital switchboard. The service has led to ICU admissions, treatment adjustments, and positive patient feedback, aligning closely with the goals of Martha’s Rule. Northern Ireland While the initiative has been praised and its results shared with devolved governments, there’s no formal adoption or pilot programme underway in Northern Ireland. How to Make a Complaint Try and Resolve it Informally Speak directly to the staff involved or the service provider (e.g. GP practice, hospital department, or ambulance trust). Ask to speak with the Practice Manager or Ward Manager, or in the case of an ambulance trust, Google your trust followed by "complaint" (e.g. London Ambulance Service Complaints) to bring up their individual process. You can also contact the Patient Advice and Liaison Service (PALS) at the hospital - they offer confidential support and may help resolve issues quickly. Formal complaints procedures can be long and take a lot of time and energy, so it is worth investing in the 'informal' stage to see if a resolution can be reached. PALS The Patient Advice and Liaison Service (PALS) is a free, confidential NHS service in England and Wales, that supports patients, families, and carers. It acts as a friendly first point of contact if you have questions, concerns, or need help navigating NHS services. What PALS Can Do for You Listen to your concerns and help resolve issues informally and quickly. Explain NHS procedures, including how to make a formal complaint. Provide information about NHS services, patient rights, and support groups. Help you communicate with NHS staff or departments if you feel unheard or misunderstood. Signpost you to advocacy services if you need help making a formal complaint. When to Contact PALS If you feel something went wrong with your care but want to try resolving it without making a formal complaint. If you’re unsure how to raise a concern or who to speak to. If you need help understanding NHS processes or accessing support. How to Contact PALS In person: Most hospitals have a PALS office — ask at reception or check the hospital’s website. Online: Use the NHS PALS search tool to find your local service. By phone: Call your hospital switchboard or NHS 111 and ask to be connected to PALS. What about in Scotland, Wales & Northern Ireland? Scotland: Rather than PALS, Scotland has the Patient Advice and Support Service which is delivered by the Citizens Advice network. It offers a similar service to PALS. Wales: As well as having PALS in several of the Welsh Health Boards, there is also Llais (previously known as the Community Health Councils) that offer independent complaints advocacy. Northern Ireland: PaLS in Northern Ireland is not related to patient support. However, both the Citizens Advice and also the Health & Social Care (HSC) complaints procedure are available for patients in Northern Ireland. There is also a recently updated (July 2025) Model Complaints Handling Procedure (MCHP) from the Northern Ireland Public Services Ombudsman. It is a chunky document but Section 3 is Key Information for Service Users, and includes a quick guide to the Complaints Procedure. Make a Formal Complaint If the issue isn’t resolved informally, you can make a formal complaint: Who to complain to: The NHS organisation where you received care (e.g., GP surgery, hospital trust or ambulance trust). How: In writing (email or letter), by phone, or using an online form on the provider’s website. When: Ideally within 12 months of the incident. What to Include in a Formal Complaint Your Contact Details: Full name Address Phone number and/or email NHS number (if known) Patient Details (if you're complaining on someone else's behalf): Their name and contact details Your relationship to them Written consent from the patient (if they are able to give it) A Clear Description of What Happened: What happened: Describe the incident or issue clearly and factually. When it happened: Include dates and times if possible. Where it happened: Name the hospital, GP practice, department, or service. Who was involved: Include names or roles of staff members if known. Why You Are Concerned: Explain how the care was inadequate, unsafe, or distressing. Mention any impact on your health, wellbeing, or trust in the service. If relevant, highlight how your condition (e.g. adrenal insufficiency) was misunderstood or mishandled. What You Would Like to Happen Next eg: An apology An explanation A review of procedures or training Reassurance that it won’t happen again Any other resolution you feel is appropriate Supporting Evidence (if available): Appointment letters Emails or messages Medical records Notes or a diary of events Escalate if Needed If you're unhappy with the response: You can escalate your complaint to the Parliamentary and Health Service Ombudsman (PHSO). They will review whether the NHS handled your complaint fairly and thoroughly. For NHS complaints, you can go directly to the PHSO, but you may also choose to involve your MP if you feel it would strengthen your case or if you're facing delays. How MPs Can Help with NHS Complaints 1. Supporting Your Complaint MPs can write to the NHS organisation on your behalf to raise concerns or request a review. They may help escalate the issue if you’ve exhausted the formal complaints process and still feel unheard. Their involvement can sometimes prompt a more thorough or timely response. How to Involve Your MP Find your MP: Use www.parliament.uk to search by postcode. Write a clear summary of your complaint: What happened When and where What steps you have already taken Why you’re dissatisfied with the response What you’d like the MP to do (e.g., write to the NHS Trust, refer to the Ombudsman) Include supporting documents: Letters, emails, complaint responses, or medical notes (if relevant). Be respectful and concise: MPs receive many requests, so clarity helps. When It’s Most Helpful If your complaint involves systemic issues, such as repeated failures in care for people with adrenal insufficiency. If you believe your rights under the Equality Act 2010 have been breached. If you’ve experienced delays, lack of transparency, or poor communication in the complaints process. Tips for Writing Your Complaint Be factual: Stick to what happened, when, and who was involved. Stay objective: Avoid emotional language, even if the experience was upsetting. Be polite: A respectful tone helps your concerns be taken seriously. Be clear: State what outcome you’re seeking (e.g., an apology, service improvement, or explanation). The Emotional Impact of making a complaint We understand how painful it can be to feel dismissed or neglected — especially when living with a rare, life-threatening condition. You are not alone, and your voice matters. Support Services Available Patient Advice and Liaison Service (PALS): Available in most hospitals to help resolve concerns informally. See above for alternatives and equivalents in the devolved nations. NHS Complaints Advocacy: Free, independent support to help you write your complaint and attend meetings. Search online for “NHS complaints advocacy [your area]” or contact your local Healthwatch. Healthwatch England: Offers advice and can direct you to local support. Your GP Practice or Hospital Website: Often includes a complaints section with contact details and forms. FAQs Q: What if I’m too upset or overwhelmed to make a complaint?A: It’s completely understandable to feel overwhelmed, especially after a distressing experience. You don’t have to go through the process alone. You can ask a trusted friend, family member, or carer to help you write and submit your complaint. You can also access free, independent support through NHS Complaints Advocacy services, who can guide you through each step and even accompany you to meetings if needed. Q: Will making a complaint affect my future care?A: No. NHS services are committed to treating all patients fairly and without discrimination. Making a complaint should not negatively impact your care. In fact, raising concerns can help improve services and ensure that your needs — and those of others with adrenal insufficiency — are better understood and met in the future. Q: Can I complain anonymously?A: Yes, you can submit a complaint anonymously. However, doing so may limit the ability of the NHS to investigate the issue thoroughly or provide a personal response. If you’re concerned about confidentiality, you can discuss this with an NHS Complaints Advocate or the Patient Advice and Liaison Service (PALS) before proceeding. Q: What if I need urgent help while waiting for a complaint to be resolved?A: If your health or safety is at risk, don’t wait for the complaint process to conclude. Contact your GP, NHS 111, or go to A&E if necessary. Making a complaint does not delay or restrict your access to care. Your wellbeing remains the priority. Q: Can the ADSHG support me with my complaint?A: Unfortunately, the charity does not have the resources to be able to support individuals with complaints relating to their care. However, you may wish to use information from our website and our leaflets/publications to help inform and share information about adrenal insufficiency. You may also want to suggest that the organisation you are working with (GP practice, hospital department) reach out to the charity if they have questions on training, awareness or protocol. They can contact [email protected] Useful Links NHS England Complaints Guidance NHS Resolution Complaints Policy (2025) HSC Model Complaints Handling Procedure (2025): Quick guide to the Complaints Procedure - Northern Ireland Whether you're newly diagnosed or have lived with the condition for years - please join our community and support our cause! You'll receive the latest expert advice, guidance and ADSHG news, whilst being part of our inspiring and supportive community. Become a member today! Join the ADSHG Connect on social media! Follow us on X/Twitter, Bluesky, Facebook, Instagram, LinkedIn, Threads, TikTok and YouTube. 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