What should I do if I feel my heart failure symptoms or concerns are not being taken seriously? 

Living with heart failure requires a strong, trusting partnership between you and your medical team. However, there may be times when you feel your symptoms, such as increasing breathlessness, fatigue, or swelling, are being dismissed or attributed to other factors like age or ‘just being tired.’ Feeling unheard is not only frustrating but can also be clinically dangerous if a flare-up is missed. In the UK, the NHS is built on the principle that patients should be active partners in their care. If you feel your concerns are not being taken seriously, you have a right to advocate for yourself and seek further review. Understanding how to communicate your needs effectively and knowing which escalation paths to take is essential for your safety and peace of mind. 

What We’ll Discuss in This Article 

• Identifying why your concerns might feel overlooked 

• Preparation strategies for more effective consultations 

• The role of ‘The Second Opinion’ and how to request one 

• Using PALS (Patient Advice and Liaison Service) for support 

• Escalating concerns within the hospital or GP surgery 

• The importance of objective data (The 2kg Rule) in self-advocacy 

• Knowing when to use the formal NHS complaints procedure 

Effective Communication and Preparation 

Sometimes, concerns are not addressed because of a ‘communication gap’ during a busy 10-minute consultation. 

How to make your voice heard: 

• Use Objective Data: Instead of saying ‘I feel worse,’ use specific numbers. Say, ‘My weight has increased by 2kg in 2 days,’ or ‘I can no longer walk to the end of my garden without stopping.’ 

• The Three-Point List: At the start of the appointment, say: ‘I have three specific concerns I need to discuss today.’ This prevents your main worry from being pushed to the end of the time slot. 

• Bring an Advocate: Having a family member or friend with you can help ensure your points are made and that you have a second set of ears to record what the doctor says. 

Escalating Your Concerns in the NHS 

If you have tried to communicate clearly and still feel unheard, you have several options within the UK healthcare system. 

1. Requesting a Second Opinion 

You have a right to ask for a second opinion from a different GP or a different consultant. 

• How to do it: You can ask your GP for a referral to a different specialist. While there is no legal right to a second opinion, it is rarely refused if you explain that you feel the current treatment plan is not addressing your symptoms. 

2. Contacting PALS (Patient Advice and Liaison Service) 

Every NHS hospital has a PALS office. They are there to help resolve issues and provide a bridge between patients and clinical staff. 

• What they can do: They can attend meetings with you, help you get answers to questions about your care, and explain the hospital’s processes for escalating concerns. 

3. Speaking to the Practice Manager 

If your concern is with your GP surgery, ask to speak with the Practice Manager. They are responsible for the running of the surgery and can often facilitate a longer appointment or a review of your care with a different doctor. 

The Role of Pumping Marvellous and Charities 

Patient-led charities like Pumping Marvellous or the British Heart Foundation provide excellent tools for self-advocacy. 

• Symptom Trackers: Using a professional tracker from a charity can give your concerns more ‘clinical weight’ when you show them to a doctor. 

• Peer Support: Talking to others in support groups can help you understand what is ‘normal’ and when you are right to be firm about your symptoms needing a review. 

Formal Complaints and Professional Standards 

If your safety is at risk or you have experienced a total breakdown in care, you may need to follow the formal NHS complaints procedure. 

• The Process: Each NHS trust has a formal complaints department. Writing a formal letter triggers a required investigation and a written response. 

• The Ombudsman: If you are not satisfied with the local response, you can take your complaint to the Parliamentary and Health Service Ombudsman. 

Conclusion 

You are the world’s leading expert on your own body. If you feel that your heart failure symptoms are changing and your current team is not responding, you have a clinical and responsibility to advocate for yourself. Whether through better preparation, seeking a second opinion, or involving PALS, there are multiple pathways in the UK to ensure your heart is properly cared for. Do not be afraid to be firm, clear communication of your symptoms is the key to preventing a minor issue from becoming a major hospital admission. Your heart’s stability depends on a team that listens to you. 

Emergency Guidance 

If your symptoms are worsening rapidly, such as gasping for breath at rest or new chest pain, and you feel you are being ignored by a non-emergency service, do not wait. Go to your local A&E or call 999. In a crisis, your priority is your immediate safety, and the emergency teams are trained to assess heart failure flare-ups quickly. 

Authority Snapshot 

This article was written by Dr. Stefan Petrov, a UK-trained physician with experience in emergency care, surgery, and intensive care units. Dr. Petrov has assisted many patients in navigating the NHS to ensure their voices are heard and their clinical needs are met. This guide follows the standards for patient advocacy set by the NHS Constitution and the General Medical Council (GMC).