We know that some of you are finding the changes to your treatment, care and appointments challenging. The strict timing of appointments can make them seem rushed. Having fewer visits to the clinic mean you have fewer opportunities to chat with your healthcare team. Also, not having someone with you at appointments can be daunting for you and frustrating for your loved ones.
We have pulled together our top five tips for managing your treatment and care during the COVID-19 pandemic.
1. Plan for your appointments
Whether your appointment is a call, video call or face-to-face we would always recommend taking the time to think about and prioritise what you want to ask.
This helps you use the time efficiently and you are less likely to forget something important.
If you run out of time during the appointment, ask for a follow-up appointment or call with your doctor or clinical nurse specialist.
For more advice about remote appointments read our Ask the Nurse Blog about “How to get the most out of remote consultations”.
2. Be honest with your healthcare team
If you feel anxious or unsafe about attending a face-to-face appointment, tell your healthcare team. They may be able to reassure you about your visit. They may also have some flexibility to change the time or location of the appointment. In some cases, you might be able to have your appointment or blood test at home.
If you feel unhappy or frustrated about any aspect of your treatment or care, tell your team. They won’t know there is a problem unless you tell them. They can look for ways to better support you.
For more advice read our Ask the Nurse Blog about “Improving communication with your healthcare team”.
3. Don’t save up questions
Remember, scheduled appointments aren’t the only way to speak to you haematologist, GP or clinical nurse specialist. If you have any questions or concerns get in touch. They will be able to schedule an additional appointment, talk to you over the phone or schedule a time to get back in touch with you.
If you are struggling to contact your healthcare team on the phone, ask if there is anyone else you can speak to or if there are any other ways to contact them. You may find that hospitals have set up new ways to keep patients connected.
You can also get in touch with us through the Myeloma Infoline (0800 980 3332 (UK) or 1800 937 773 (Ireland)) or the Ask The Nurse email service.
4. Keep your loved ones involved in your treatment and care
If your appointments are being carried out remotely your partner can join your appointments as normal.
Although your partner, family or friends can’t go with you to the hospital or clinic they can still be involved.
They can help plan for your visit and help identify any questions you need to ask. They can join you virtually (e.g. on a video call) or you can record any discussions for your friends and family to listen to afterwards.
If your partner is still getting frustrated about not having the same opportunity to ask questions, you can give your healthcare team permission to talk directly to your partner about your health. This should mean that your partner can contact your healthcare team and ask any questions on your behalf.
5. Ask for extra support if you need it
Your health and well-being is important and although we are in the midst of a global pandemic help and support is available to you if you need it.
If you feel you need it you can ask about:
- A face-to-face appointment
- A referral to a specialist to help with your pain, mobility or mental health
- The help and support available to help you with everyday activities
- Support groups in your area
- An advanced care plan discussion