Navigating healthcare services

Accessing support for Long Covid can feel overwhelming. Many people face long waits or find that services in their area are changing.

At Long Covid UK, we are here to help you understand how the system works, what you are entitled to, and how to advocate for the care you need.

Please note: We provide information and support, but we cannot offer individual medical advice. If you are experiencing a medical emergency, please call 999.

What support is available

Because Long Covid affects multiple systems in the body, care is often spread across different departments. Depending on your symptoms and where you live, your "pathway" might include:

  • Your GP Practice: For initial assessments

  • Specialist Clinics: Dedicated Long Covid clinics (where available) or "symptom-led" clinics (e.g., Cardiology for heart racing, or Respiratory for breathlessness).

  • Community Rehabilitation: Physiotherapy, Occupational Therapy (OT), and fatigue management.

  • Mental Health Support

How to access NHS support

  • Your GP is the "gatekeeper" to further NHS care. To make the most of your appointment, we recommend preparing a Symptom Log.

    Your GP can help by:

    • Ruling out other underlying conditions through tests.

    • Referring you to specialists or a local Long Covid service.

    • Providing documentation for employers or the DWP (fit notes).

  • If a local clinic has closed or doesn't exist, you should be referred to "symptom-led" services.

    • If you experience... Heart racing, dizziness, fainting. Ask for a referral to... Cardiology or Syncope clinic (for PoTS assessment).

    • If you experience... Shortness of breath or chronic cough. Ask for a referral to... Respiratory services or Breathing Pattern Retraining.

    • If you experience... Brain fog, memory issues, headaches. Ask for a referral to... Neurology or Neuro-rehabilitation.

    • If you experience... Severe exhaustion after activity. Ask for a referral to... Fatigue Management or Occupational Therapy.

    • If you experience... Digestive issues or sudden allergies. Ask for a referral to... Gastroenterology or Immunology/Dietetics.

  • Health services are devolved, meaning the "rules" change depending on where you live. However, in all four nations, your GP remains the primary starting point:

    • England: Managed by Integrated Care Boards (ICBs).

    • Scotland: Managed by local NHS Boards.

    • Wales: Managed by local Health Boards.

    • Northern Ireland: Managed by Health and Social Care (HSC) Trusts.

  • If you feel you are being dismissed or are stuck on an endless waiting list, you are not alone. Contact PALS (England) or your local Patient Advice body if you wish to make a formal complaint about your care.

Preparing for health appointments

Taking steps to prepare for your health appointment can help ensure you get the most out of your visit, especially when dealing with Long Covid. Here’s how to get ready, to know your rights and what to do if you still have questions or concerns afterward.

Useful organisations providing more information about Work, Benefits and Finance are also listed below.

Top tips

    • List your symptoms, how often they occur, even if they seem unrelated. Think about how they impact your daily life (home, work, relationships, hobbies, interests). It may be helpful to review the many resources on the Symptom Management page as part of this process.

    • Keeping a symptom diary can be really helpful. You can use a simple paper diary or apps like Bearable, Guava and Visible to keep a digital record of your symptoms and share with your healthcare team. Devices like Fitbits, Apple Watches and Garmin devices may also be useful.

    • Write down any questions or concerns you have about your health.

    • Bring a list of all medications, supplements, and treatments you’re currently using.

    • Think about the most important things you need to say and prioritise these. 

    • Gather your GP health record, test results, and notes from other healthcare providers. If you want to see a copy of the data that the NHS holds, you have the right to request your medical records by doing something called a Subject Access Request.

    • Include any documentation of your Long Covid and related health issues.

    • Schedule your appointment for a time when you usually feel your best. Many appointments can be changed to tele-health to make it easier to attend the appointment. Booking a double appointment will also allow you more time and may be helpful.

    • Rest well before and plan for some downtime after your appointment. Radical rest (doing absolutely nothing) or listening to relaxing sounds or music or doing breathwork, meditation or listening to a yoga nidra can all be helpful.

    • Bring snacks and water (and electrolytes if you find them helpful) to keep your energy up.

    • Bring a facemask (and maybe a spare) so that you have some personal protection as masks are not a requirement in most hospitals and clinics. The best protection is an FFP3 (or next best an FFP2) mask which provides better protection than surgical masks when fit well.

    • If you have specific needs that will help make your appointment more accessible, such as having a remote appointment by telephone, somewhere quiet or flat to lie down, phone ahead to see how your needs might be accommodated.

    • If you are housebound or bedbound, you may find it useful to have this recorded or coded on your medical record as it may give you access to at-home tests or services such as vaccines. Talk to your doctor to discuss this.

    • You may want to consider if you are eligible to apply for financial support to help pay for aids, equipment or medication for managing your Long Covid.

    • Consider bringing a friend, family member, or advocate to help communicate your needs and remember the details.

    • If needed, arrange for a translator.

    • Organise your thoughts with a template, including sections for symptoms, medical history, questions, and concerns. Organisations like Long Covid SOS and Standing Up to POTS both have useful templates you can use or adapt.

    • Check if your healthcare provider has experience with Long Covid. If not, bring information from reliable sources to share with them.

    • There is a one page overview on Long Covid written for doctors that was published in the British Medical Journal which can be a good place to start a conversation. There is also a useful one page guide on orthostatic tachycardia published in the same series.

    • For more detailed information you can check the UK Long Covid guidelines published by the National Institute for Health and Care Excellence (NICE) and/or the US Long Covid guidelines so you know more about what to expect at a Long Covid appointment.

During your appointment

    • Talk about your symptoms, which parts of your body they are in, how they might change or have evolved over time, and their impact on your daily activities.

    • Sometimes talking about the frequency and intensity of your symptoms can help doctors understand your experience better. For example, saying something like “I’ve had a migraine every day for the last four weeks with a 9/10 severity.”

    • Many people find that symptoms can come and go in an episodic way. Using words like ‘episodic’, ‘relapsing/remitting’, ‘consistent’ can also help you clearly explain your Long Covid experience.

    • Share any patterns or triggers you’ve noticed from your symptom diary or wearable devices. Whilst they are not as accurate as research tools they can still be a very useful starting point to guide further investigation.

    • Be honest about how your symptoms affect your life. Have you had to reduce or stop certain activities? How has this affected you? If you bring someone with you who knows you well, they can also share their experience to reinforce the impact that Long Covid is having on you. Clear communication helps your healthcare provider understand your situation better. You deserve to have your concerns heard and believed.

    • If you don’t understand something, ask your healthcare provider to explain it further.

    • Inquire about the latest research or treatments that might help your condition. Some people might want to ask whether there are opportunities to get involved in Long Covid research studies. Long Covid Support has a patient-led Research Involvement Group on Facebook which connects people who had a Covid infection with researchers who are studying Covid.

    • Either you and/or your advocate might find writing down important points during the meeting help you better remember what happened. Some people find voice recording the appointment helps save energy. If voice recording is something that would help you, ask if you can do this at the start of the appointment.

    • Make sure by the time you leave you know what has been agreed and what the next steps are. For example, what should you expect at the follow up appointment and when will this be? Do you need to be referred on to a specialist for more in depth investigations?

    • Write down important information during the appointment or ask your support person to do so if you need to save energy for whatever reason.

    • Request copies of any new test results or medical records.

    • If you feel your concerns aren’t being addressed, politely ask for more information or explore the possibility of a second opinion.

After your appointment

    • Go over any notes you took during the appointment whilst they are still fresh.

    • Make sure you understand the treatment plan and next steps.

    • If you forgot something or realise you didn’t mention something you can always share this after the appointment or at the follow up appointment.

    • See what happens to your symptoms as you start to put the treatment plan into place. Does anything improve or get worse? 

    • If you have additional questions or concerns either in general or after starting treatment, contact your healthcare provider. The NHS website has information on medicines.

    • Schedule any follow-up appointments or tests as recommended.

    • If you’re not satisfied with your visit, there are a number of organisations you can contact for further support.

    • Join Long Covid support groups and online communities for additional help and information. Long Covid Support has an online peer support community on Facebook called the Long Covid Support Group which anyone with Long Covid and/or their carers can join.

  • These are rights that apply to people using NHS services in the UK.

    • Access to Care: You have the right to NHS services that are appropriate, meet your needs, and reflect your preferences.

    • Information: You should be informed about your treatment options and their risks and benefits.

    • Consent: You have the right to accept or refuse treatment; no treatment should happen without your consent.

    • Respect and Dignity: You should be treated with dignity and respect, and protected from abuse.

    • Complaints: You can complain about the services you receive and have your complaint investigated and responded to by using the Patient Advisory Liaison Service (PALS). You can find your local PALS service here.

    For more detailed information about your rights, refer to the NHS Constitution for England.

    • You can contact your doctor (general practitioner, GP) or GP Practice Manager. Your GP practice should have a Patient Participation Group, consisting of patients and carers, the practice manager and one or more doctors.

    • Your local Healthwatch, (there is one in every area of England). They are a champion for the public in all things relating to healthcare.

    • The following link provides more information as to how patients can have a say in their local healthcare services.

    • You can also write to your local MP and request that they advocate on your behalf.

Helpful resources

Managing your Long Covid health journey

  • Build a Network: Connect with others who have Long Covid through support groups or online forums.

  • Stay Updated: Keep up with the latest research and treatment options.

  • Focus on Self-Care: Prioritise good food and drink, rest, and gentle movement as you’re able staying within your own threshold to prevent a crash (post exertional malaise or PEM). See the section on ‘PEM’ on the Symptom Management page.

  • Communicate Openly: Keep open lines of communication with your healthcare team about your progress and any new symptoms. Long Covid Care have a website to help you talk about your Long Covid with healthcare providers.

Remember, you are not alone. There are resources and support systems available to help you manage Long Covid and advocate for your health needs and you have a right to be heard and understood.