Preparing for Your Health Appointments and Understanding Your Rights
1. Gather Your Information:
- 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.
- 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.
2. Collect Your Medical History:
- 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.
3. Conserve Your Energy:
- 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 provide 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.
5. Bring Support:
- Consider bringing a friend, family member, or advocate to help communicate your needs and remember the details.
- If needed, arrange for a translator.
6. Use a Template:
- 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.
7. Verify Your Provider’s Knowledge:
- 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
1. Describe Your Symptoms:
- 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.
2. Ask Questions:
- 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?
3. Take Notes:
- 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.
4. Advocate for Yourself:
- If you feel your concerns aren’t being addressed, politely ask for more information or explore the possibility of a second opinion.
After the Appointment
1. Review Your Notes:
- 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.
2. Keep Monitoring your Symptoms
- See what happens to your symptoms as you start to put the treatment plan into place. Does anything improve or get worse?
3. Follow Up:
- 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.
4. Seek More Support:
- 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.
4. Know Your Rights:
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.
If you’re still concerned:
- 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
Support Groups:
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.
