Regular appointments with your rheumatology team are very important to monitor your axial SpA (AS) and ensure it’s as well managed as possible. COVID-19 has seen lots of changes to GP surgeries and hospital clinics while the NHS adapts to look after everyone affected by the pandemic. We have asked consultant rheumatologists how their practice has changed and what advice they can give to patients for their virtual appointments.
Privacy
When you have a telephone or video call appointment scheduled, ensure that you have somewhere quiet and private to talk. As you would in a face-to-face appointment, you will be discussing personal and medical details, so it’s important you’re somewhere comfortable and free from distractions. When first speaking to someone on the phone, check who it is so you know what to expect from the appointment and to know you’re speaking to the correct person.
Contact details
It’s important to check your doctor has the correct details for you, including your telephone number, address and email address. Contact them before your appointment to ensure your details are up to date. If you prefer to be contacted on a particular phone number, for example mobile instead of landline, then you can ask that this is recorded on your notes.
Be prepared
Taking ten minutes to prepare for your appointment can help make the most of the time you have. You can download our prompt sheet here and use it to clarify what you would like to discuss. Things you may want to consider include:
- Have a list of your current medication to hand
- Note down if you have seen any other healthcare professionals or had other medical issues since your last appointment, including blood tests and scans
- Make a note of how you’ve been feeling since your last appointment
- Jot down if you have been experiencing any medication side effects
- Try to narrow down the main one or two issues you would like to discuss so you can prioritise them in your appointment
- Complete and note your BASDAI score (using the MySpA app or www.BASDAI.com)
Prioritising
It’s helpful to narrow down what you would like to discuss and prioritise any issues you’re having, to ensure you discuss what’s most important to you. If you’re having difficulty prioritising a particular area or symptom, sometimes your BASDAI score can help. If you look down the different scores out of ten for different areas, there may be one or two that are higher than the others. These are the areas you may wish to focus on with your healthcare team.
The BASFI score asks questions in a similar way to BASDAI, but looks at your ability to complete different activities. This can also be helpful when you’re considering how you’re feeling and looking at potential issues you would like to discuss. You can complete the BASFI score on the MySpA app or on www.BASDAI.com.
Working differently
During the COVID-19 pandemic, there has been a huge shift within the NHS to help provide care to everyone affected. Many rheumatology departments have moved so that healthcare professionals can move onto wards to directly care for patients, in what is a very challenging situation, so we thank them for their hard work and continued care.
Understandably, people with axial SpA (AS) still need access to help and advice. The rheumatology services offered across the UK during this time have varied, so we’ve spoken to consultant rheumatologists about how they are now working and what advice they would give to patients.
Professor Karl Gaffney, Consultant Rheumatologist and axSpA Service Lead at the Norfolk and Norwich University Hospital, explained that his department is able to look after patients remotely through telephone appointments. They have continued to see new patients over the phone and ordered investigations remotely to continue caring for their patients. Monitoring symptoms through the BASDAI score is possible over the phone and has enabled them to be able to prescribe biologics for some patients without the need for a face-to-face appointment.
Dr Antoni Chan, Consultant Rheumatologist and axSPA Service Lead at the Royal Berkshire Hospital described that virtual (video or phone) appointments last around 15-20 minutes. Before the appointment, a clinician prepares by reading through their previous notes and reviewing any scans or blood test results. When both the practitioner and patient are well prepared for the appointment, it is generally more focused than a face-to-face appointment. Dr Chan explained that virtual appointments work particularly well for people with axial SpA (AS) because they tend to be well motivated, proactive and used to completing outcome measures such as the BASDAI. So the practitioner is supporting the patient in their self-management and is there to advise on changes if they are needed.
Face-to-face appointments
During a telephone or video consultation, you or the practitioner you’re speaking to may decide that you need to be seen in person. This will be guided by the symptoms you’re experiencing and your level of risk for COVID-19. Face-to-face appointments may be needed if you have joint swellings that need to be assessed, if you need a treatment, such as a joint injection, or if you need your movements measured at your annual review. It is also patient choice, so you should be able to discuss your needs regarding virtual or face-to-face appointments with your healthcare team.
Benefits of virtual appointments
Generally, only a small percentage of people need a face-to-face appointment, because the majority of people have found that virtual appointments actually enhance their care. There is more flexibility in appointment times and patients are reporting that they don’t need time off work, they don’t need to travel a long distance for their appointment and they don’t need to arrange childcare. A virtual appointment may also lead to a future face to face appointment if this is deemed necessary by both the practitioner and patient.
Dr Chan described an unusual benefit of a virtual appointment; one patient was unable to return home from Spain due to COVID-19 lockdown, but he was still able to attend his appointment by video and there was no need to delay.
Challenges of virtual appointments
Virtual appointments can be more challenging for communication. For example, over the phone your practitioner can’t see your facial expressions or body language, so you have to be very open and honest with them how you’re feeling. This can be helped by using video for the clinics. If you have difficulties with communication, then a face-to-face appointment may be more beneficial for you.
Patient experiences of virtual appointments
While there has been no formal audit of feedback from remote appointments for people with axial SpA, Professor Gaffney explained that a survey of patients enrolled in the Norfolk Arthritis Register reported good support from rheumatology teams during the COVID pandemic. Dr Chan explained their patients have given fantastic feedback for the care they have received during virtual appointments and hopes that the service will remain in the future. Clinics will be offering a mixture of face-to-face, telephone or video appointments to suit patients.
Technology for virtual appointments
If you’re having a video call appointment, it can be helpful to test your technology before the appointment:
- Check your internet connection
- Test the camera and microphone on the device you will be using (e.g. phone, computer, tablet)
- Adjust the settings on your camera and microphone so you can see and hear well
- During the call, check that your doctor has your telephone number so they can phone if you have any technical issues during the video call
Check your surroundings to ensure you have good lighting and there is no bright light shining from behind you towards the camera.
Support between appointments
It’s important that you have access to support between appointments. Ask your rheumatologist or physiotherapist if there is a Helpline number for the rheumatology department that you can use to speak to someone for advice between appointments. Some hospitals have specific lines for patients with axial SpA (AS) and some have one for the whole rheumatology department.
If you are unable to speak to someone for advice and support, please call the NASS Helpline and we’ll help as best we can. The Helpline is open Monday-Friday, 10am-4pm on 020 8741 1515.
Physiotherapy appointments
Physiotherapy services have been similarly affected, so many hospitals are offering telephone or video appointments with physiotherapists for advice. As with appointments with your rheumatologist, it’s important to prepare well for your physiotherapy appointment and prioritise what you would like to discuss. You should still have the option to see your physiotherapist face to face, so do speak to your healthcare team to discuss this.
NASS self-management
During COVID-19, we understand that self-managing your axial SpA (AS) has become even more important and it has been challenging for some people. NASS has been holding weekly Facebook live videos and creating resources to help you learn different ways to manage your symptoms and speak to experts for advice. All our information is available on the new My AS My Life section of our website.
Summary
- Virtual appointments are convenient for patients with positive feedback
- Preparation is key
- It’s important to ensure your doctor has the correct contact details for you
- For virtual appointments, check your internet connection, camera and microphone before the appointment
- Virtual appointments won’t replace face-to-face, but can enhance them
- Patients are still able to choose if they would prefer a face-to-face appointment
- Self-management remains very important and NASS is here to support you
Zoë Clark is an osteopath living with axial SpA herself and has joined the NASS Helpline team to help with the unprecedented demand over COVID-19. You may have seen her blog posts previously written for NASS and she spoke at the latest parliamentary meeting in January and appeared on Channel 5 News. She’s joining the NASS team to help you keep active and feeling well during this difficult time of isolation.
Zoë is available on the Helpline each day, so if you’d like to have a chat then please get in touch and we can arrange a call. She’ll also be sharing some of her top tips and answering any common questions, so please let us know in the comments if there’s any particular advice you’d like.
The Helpline is open 1000-1600 Monday to Friday on 020 8741 1515 or you can email zoe@nass.co.uk
