If you’ve ever left an appointment feeling uncertain or unheard, you’re not alone. Navigating the healthcare system can feel complex and rushed, even for experienced patients.

Self-advocacy is about taking an active role in your own care, understanding your rights, and knowing how to navigate the system safely. It doesn’t mean you’re being demanding; it means you’re informed, prepared, and empowered to make your voice heard when it matters most.

Contents

1. What Stops Patients Speaking Up?
2. Understanding Your Rights and Responsibilities as a Patient
   • Your Rights
   • Your Responsibilities
   • Other Things You Should Know – Jess’ Rule, Martha’s Rule, second opinions, ReSPECT, DNAR
3. How to Speak Up as a Patient or Advocate
4. What to Do Next If You Still Don’t Feel Heard
5. Getting Advocacy Support When You Need It
6. Navigating System-Wide Challenges
   • Managing Long Waiting Lists
   • Dealing with Appointment Cancellations
7. In Summary: A Collaborative Mindset
   

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DISCLAIMER:

While I am a practising doctor, the information on this site is for educational purposes only. It does not take into account your personal circumstances, which can significantly affect medical decision-making and treatment. This content therefore does not constitute medical advice, and should not be relied upon for diagnosis or treatment. Always consult a qualified healthcare provider regarding any health concerns.

This article was written on the 01/12/2025 using up-to-date sources at that time. Please be aware that medical information and guidelines change often.

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What Stops Patients Speaking Up?

Sometimes, even when people want to speak up, it can be difficult. There are a few things that can get in the way:

• Time pressure – short appointments can feel “rushed”, or can make it difficult to discuss all your concerns.
• Fear of being seen as “difficult” – many worry they’ll upset or annoy clinician’s by asking.
• Limited awareness – patients may not always have all the information they need about their care, options, or how to advocate for themselves.
• Health or cognitive challenges – often, when we see our doctor, it’s when we’re not feeling well. It can be difficult to speak up for yourself when you’re feeling this way. Pain, fatigue, mental health conditions, language barriers and more, can all make advocacy more difficult.

Recognising these barriers are a useful first step I knowing how to tackle them.

Understanding Your Rights and Responsibilities as a Patient

The National Health Service (NHS) belongs to everyone in the UK. To get the best care, it helps to know your rights as a patient – and your responsibilities to the staff and services that support you. This is detailed in full in the NHS Constitution, but here are the key things you need to know as a patient.

Your Rights

Your Right	What This Means for You
Access to NHS services	Everyone can use NHS care free-of-charge (with limited exceptions) and cannot be refused on discriminatory grounds. Access is based on clinical need.
Dignity, respect & safety	You should receive high-quality care in a clean, safe, and respectful environment.
NICE-approved treatments	If clinically appropriate, you have access to treatments recommended by NICE.
Clear information	You must be told about your treatment options, including risks and benefits.
Confidentiality	Your information is kept private unless there is a safety or legal reason to share it. You also have the right to be informed how your data will be used, and to request that it is not used beyond direct care (e.g. for research / planning).
Access to your records	You have a right to see your own health records and to request correction of factual inaccuracies.
Consent	You can accept or refuse treatment or examinations.
Choice of GP practice	You can choose your GP practice and request specific clinicians where possible.
Right to Choose	If you’re being referred by your GP for specialist-led treatment (including mental health assessment/treatment), you have a right to choose who you’re referred to at the point the referral is made. There are some exceptions to this, e.g., if you’re serving in the armed forces. Click here to find out more.
Involvement in decisions	You should be included in decisions about your care.
Transparency if something goes wrong	If a “safety incident” happens (where harm has been caused), the organisation must be open with you: tell you what happened (or could happen), apologise, and offer support if harmed.
Complaints	Complaints must be acknowledged in 3 working days and properly investigated.
Ombudsman review	If unhappy with a complaint outcome, you can escalate to an Ombudsman. There are two options: Parliamentary and Health Service Ombudsman or Local Government Ombudsman
Judicial review	You can challenge unlawful decisions, by asking for a judge to review it (judicial review).
Compensation	If you have been harmed by negligence, you will receive compensation,

Your Responsibilities

Your Responsibilities	What This Means for You
Provide accurate information	Be honest and clear about your symptoms, medical history, medications, and any concerns so clinicians can give you safe, effective care.
Keep appointments (or cancel in good time)	Attend your appointments, or cancel/reschedule as early as possible. Missed appointments increase waiting times and costs for the NHS (missed GP appointments alone cost the NHS around £216 million annually).
Treat staff and other patients with respect	Speak and act respectfully. NHS staff have the right to work without fear, violence, or discrimination.
Follow agreed treatment plans	Take medications as prescribed and follow advice. If you’re struggling or experiencing side-effects, speak to your clinician rather than stopping on your own.
Participate in public health efforts	Engage in vaccination programmes, screening tests, and other public health initiatives that protect you and your community.
Give feedback to help improve care	Share your experiences – good or bad. Your feedback supports service improvement and ensures a better NHS for everyone.

Other Things You Should Know

Jess’ Rule – this is a new primary care (GP) initiative. If a patient visits their GP three times with the same or worsening symptoms, the GP team is encouraged to “reflect, review, and rethink” the case. Click here to read more about how this works in practice.

Martha’s Rule – this applies mostly in hospital (inpatient) settings. It gives patients – or their families / carers – as well as all staff the right to request a rapid, independent review if they worry the patient’s condition is deteriorating and staff do not seem to be responding. There are 3 core parts:

1. Patients will be asked at least daily how they are feeling, and whether they feel their condition is getting worse.
2. All staff are able to ask for a review from a different team at any time if they are concerned a patient is deteriorating, or they feel their concerns aren’t being responded to.
3. Patients, families, and carers are also able to ask for a review at any time – it acknowledges that the people who know the patient the best are more likely to recognise early signs of deterioration.

Right to a second opinion – though this is not a legal right, you can ask for a second opinion from a different specialist team, if you’re unsure about your current management plan. To do this, speak directly with your specialist team, or with your GP (as they can refer you to a different specialist team for a second opinion).

ReSPECT process (Recommended Summary Plan for Emergency Care and Treatment) – an important UK-wide future planning tool, that allows patients to make personal recommendations for their care and treatment if a future emergency were to occur in which they weren’t able to express or make their choices. It covers important topics such as:

A Do Not Attempt Resuscitation (DNAR) decision is a medical decision made by senior clinicians about whether CPR (cardiopulmonary resuscitation) would be clinically appropriate if a patient’s heart or breathing were to stop. Though patients and their family members should always be involved in decision making, the final decision lies with the responsible clinician.

Doctors are not legally required to offer treatments that would not work, would cause more harm than benefit, or would not be in the patient’s best interests – it is a common misconception that relatives must “agree” to a DNAR. If you disagree with the decision, however, you can ask for a second opinion and review.

How to Speak Up as a Patient or Advocate

Speaking up and advocating for yourself can be nerve-wracking, but here are some top tips to make it a little easier:

1. Be prepared – click here for a full guide.

2. Ask questions

• Don’t hesitate to ask for clarification or repeat information.
• Use phrases like:
  • “I don’t feel I’ve explained this well – can I try again?”
  • “This feels worse/different to me – could we review it?”
  • “What are the next steps, and when should I come back?”

3. Be clear about what matters most

• Focus on your most urgent concerns first.
• Use the “Ask 3 Questions” method to help you be more proactive in your care. Examples include: What are my options? What are the pros and cons? What support is available?

4. Use support and escalation systems

• Hospital “speak-up” policies (like Martha’s Rule)
• Patient Advice and Liaison Services (PALS) at your local hospital
• Advocacy organisations if needed

5. Request a second opinion if unsure

• Speak with your specialist or GP to arrange a second opinion if you feel unclear about your diagnosis or treatment plan.

What to Do Next If You Still Don’t Feel Heard

If, despite the above, you still don’t feel like your concerns have been listened to or addressed, here’s what you can do next:

1. Clarify – Politely restate your concerns and ask for a review of your symptoms or situation.
2. Consider advocacy support – Friends, family, or trained advocates can attend appointments with you and help ensure your voice is heard.
3. Escalate internally – Ask to speak with a senior clinician, nurse-in-charge, or GP partner or practice manager.
4. Use formal support – Contact PALS for help mediating or clarifying next steps.
5. Make a formal complaint – If unresolved, you can escalate to the Parliamentary & Health Service Ombudsman or Local Government Ombudsman.

Getting Advocacy Support When You Need It

If you’re finding it hard to speak up and advocate for yourself, then someone else can advocate on your behalf.

Friends and family are great options – and they can come along with you to your appointment.

If friends and family aren’t able to help, then you can ask your local council to find an advocate for you. You can find your local social services here.

The following charities all offer support on advocacy, too:

• POhWER work in some areas within the UK. Click here to find out more.
• The Advocacy People offer support to some areas within the South of England. Click here to find out more.
• VoiceAbility work in various areas across the uk. Click here to find out more.

If the above charities don’t offer support in your area, search “advocacy + (insert your area)” on the internet to find options for you.

Also, if you would like help speaking up about your care in relation to a specific health condition or diagnosis, lots of charities offer advocacy support. For example, local Minds offer advocacy support for mental health.

Navigating System -Wide Challenges

Managing Long Waiting Lists

Waiting lists are a reality in the NHS, but there are safe, effective ways to move things forward:

1. Keep your GP updated if your symptoms worsen. Waiting times are based on clinical need. If your condition changes, you may be re-categorised.
2. Ask if there are alternative providers with shorter waits, as under “Right to Choose”, you may be able to attend a different hospital or provider.
3. Use Patient-Initiated Follow Up (PIFU) pathways if this is this available to you. Many specialties allow you to self-book follow-up if your condition flares. This prevents you getting stuck waiting for a routine review slot.

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💡 Tip: Did you know you can use NHS 111 or eConsult/Patchs (through your GP practice website) for timely advice if appointments are delayed or symptoms change. These services can help you get guidance, triage your concerns, and prepare for your next consultation. Read more about how to navigate the NHS here.

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Dealing with Appointment Cancellations

Cancellations are incredibly frustrating, and disappointing. These steps can help:

1. Ask to be added to the short-notice cancellation list. Many clinics or surgery lists will offer same-day or next-day slots if someone else cancels.
2. Check if virtual appointments are available, as these may be offered more quickly than face-to-face ones.
3. Ask for a timeframe for when to expect the next appointment. If this passes, then contact the department again – politely but firmly.

In Summary: A Collaborative Mindset

Speaking up as a patient is not about confrontation – it’s about partnership. Clinicians want to help you; they are committed to your safety, wellbeing, and best outcomes. Understanding your rights, being prepared for appointments, and knowing how to escalate concerns helps you and your healthcare team work together effectively. Remember, you are never alone: support, advice, and advocacy services exist to help you navigate the system and make sure your voice is heard.

If you’ve ever had to advocate for yourself or a family member, what strategies have worked for you? What helps you feel confident in making decisions about your care?

Leave a comment down below! I’d love to hear from you.

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Do you have a medical background and are passionate about health education? Or are you a patient who is keen to share their experience to help others?

We’re looking for writers to contribute to our UK-based medical education blog, helping to create a shared understanding between the public and healthcare practitioners.

What we’re looking for:

• Clear, engaging writing
• Accurate, evidence-based content (for clinical writers)
• Honest, relatable patient perspectives (for patient writers)

Interested? Head over to the “Write for Us” page (or click here)!