Your SpAce - Getting the most out of appointments

If you’ve recently been diagnosed with axial SpA, remember that it takes time to understand your condition and to get used to medical appointments. Over time it will get easier.
It’s normal to feel a mixture of emotions before and during an appointment. Some people feel anxious or overwhelmed, but preparing well beforehand can help with this. Preparing also gives you the best chance of getting the most out of your appointment.

Some hospitals have information about their staff and departments on their websites, and it can be nice to read this before an appointment to reduce any feelings of anxiety. Visit the hospital website and use the search function to find the rheumatology department information. Do remember the website information may not be up to date or complete.

Bear in mind you may not see the person named in an appointment letter on the day. In some hospitals, you may see a different healthcare professional who works with your consultant. For example, some teams include Occupational Therapists, Specialist Physiotherapists, Nurses, and others.

Research the practicalities in advance. Think about how you will get to the appointment, including public transport or parking, and where in the building it is. Aim to arrive early to give yourself a chance to mentally prepare for the appointment. Sometimes clinics can run late, or you’ll be sent for tests such as blood tests as part of your appointment, so allow plenty of time on the day.

If it’s an online or telephone appointment, ensure you have somewhere private to take the call and you’re able to focus, free from distractions.

A couple of weeks before, set aside time to reflect on what you discussed at your last appointment. You may like to look at your previous clinic letter to remind yourself. Consider how things have changed since and if there’s anything you’ve been struggling with.

Ask yourself what’s been going well since your last appointment. Even if you don’t share this on the day, it’s important to recognise when something’s going well and celebrate your wins.
If you’re taking medication for your axial SpA, think about how much it’s working and any side effects you’re experiencing. Think about the things you’ve been doing to support yourself between appointments. For example, what activity or exercise you’ve been doing.

Don’t forget to think about how your condition is affecting you at night and the quality of your sleep, as this can sometimes be overlooked. Similarly, how are your symptoms in the morning? And are they impacting your work or social life?

Consider other symptoms you experience that may be related to your axial SpA. For example, any skin issues, eye problems or gut symptoms? Do mention these on the day. Your team may be able to advise, and these symptoms may change what treatment options best suit you.

Finally, reflect on how you’ve been coping emotionally. Consider how your condition is impacting your mental health and discuss this if needed, as your healthcare professional can provide advice and refer for support.

If it’s been a long time since your appointment, it can be difficult to reflect back. You may find it useful to track your symptoms regularly to help with this, so do watch our video linked below to learn some practical ways to do this.

Speak to friends and family, as they may have suggestions or things they’ve noticed. Consider any questions you’d like to ask about the future. For example, if you want to start planning for a family, changing job, or have a big life change coming up.

Once you’ve taken the time to reflect, make a list of all the things you’d like to discuss, then mark down the top 2 to 3 priorities for you – this helps to ensure you discuss the most important things in the limited appointment time. Use our preparation worksheet linked below. It includes a space to list all your current medication and supplements, or you may prefer to keep your notes on your phone.

If your hospital sends you questionnaires or forms to complete, set aside time to do this beforehand. They help your team understand how you’re managing, and what medication options you’re eligible for.

You may like to ask a friend or family member to attend the appointment with you. Loved ones can help us remember what we want to discuss, may think of questions we wouldn’t have thought of, can help remember and process after the appointment, and can help in practical ways, such as providing translation or help with communication.

Do think about what you’d like to discuss at your appointment, as this may change which friend or family member you’re comfortable having attend. It’s also important to discuss with them beforehand about what you’d like from them. For example, would you like them to be involved in the discussion, or would you prefer they observed only?

Over time it gets easier to prepare for an appointment and you’ll find ways that work best for you. Do share your experiences and advice in the comments below, then watch our next video for advice on things to do during an appointment.

It’s important that you get what you need from your appointments to enable you to best manage your condition and the impact it has on your life. Unfortunately, there are time constraints on appointments, which is why reflecting beforehand and preparing your priorities in advance is so useful. If you haven’t already, watch our previous video on how to prepare.

Take your list with you, remembering what your priorities are and explain to your healthcare professional at the beginning of the appointment that you have key things you’d like to discuss. This will help you both plan how to use the time and ensure you both cover what you need to. In some circumstances, your healthcare professional may need to refer you to someone else or book an extra appointment to discuss further.

Your healthcare professional will take notes during and after the appointment. They’ll share these with you afterwards, usually by a clinic letter within a few weeks. You may like to make notes of anything urgent or key information during the appointment using our resource sheet or maybe using a notes app on your phone.

If you’re feeling overwhelmed with information, ask for any written information or a web link to further reading, so you can take time after the appointment to understand and processing things.

If during the appointment you feel something has been missed or you don’t understand something, ask the clinician to repeat or go over something again. You may like to keep a note and revisit it at a future appointment if needed.

Do ask if the hospital have an app or system you can use for recording your symptoms between appointments. This can help you prepare for your next one and make the most of your time with your healthcare professional.

At the end of the appointment, ask if they have an advice line you can call between appointments if needed or they may have an email address or app you can use. It’s important you understand who you can contact, how you can reach them, and what they’re able to assist with.

So how do you make the most of your time with healthcare professionals? Share your advice and experiences in the comments, then watch our next video about after and between appointments.

In this video, we’re talking about what to do after and between medical appointments. If you haven’t already, watch our previous videos on preparing for and what to do during an appointment.

Now, you may want to set aside time immediately after an appointment to give yourself a chance to process it and make notes, and then do something relaxing or fun if you found the appointment stressful.

Over the following days, you may like to take time to reflect. You can make notes with our reflection worksheet on how you felt the appointment went, anything you didn’t cover, and any follow up questions you have. You could also talk things through with a friend or family member if needed.

Sometimes you’ve been looking forward to an appointment for a long time, but you leave feeling like you didn’t get what you wanted or needed from it. If the appointment didn’t go as well as you’d hoped and you were unable to share this during the appointment, the first step is to reflect on exactly what didn’t go well or was missing. Is it something that could wait until your next appointment? If not, it may be best to contact the clinic helpline or email address, or your healthcare professional’s secretary. Share with them what you felt didn’t go well or was missing, as this will change how they’re able to help.

You may be offered a telephone conversation or follow up appointment to discuss if there was anything missed. Or you may be referred to another healthcare professional if they’re best placed to help, for example to a physiotherapist or Occupational Therapist.

If you’ve had concerns about being listened to or feel there’s an issue with the patient-clinician relationship, a good place to raise this is with the hospital Patient Advice and Liaison Service, or PALS. They have lots of ways they can help.

You could also visit the NASS website or call the Helpline if you have general questions about managing your symptoms or the treatment options for axial SpA.

Once you receive your clinic letter, do contact your healthcare professional if there are any mistakes or if you’re unsure of anything. Keep these clinic letters somewhere safe, as they can help you prepare for your next appointment, and you may like to use them to share information with other healthcare professionals.

You may have a long time between appointments, so consider tracking symptoms to make it easier to reflect on how you’ve been coping. Some people do this on paper or use an app. Visit our video linked below to learn some practical ways to do this.

It’s important to have support to manage your condition during the sometimes long time between appointments. Activity, exercise, and self-management techniques are all a key part of this. Visit our other Your SpAce modules for some bitesize, practical tips. Then join one of our online meetups to meet other people with the condition to share experiences and advice.

Many patients with spondyloarthritis find that their symptoms change from day to day, week to week, or month to month. This can be really difficult to get over to your clinician at your clinic appointment if you’re only seen every few months, or indeed, once a year. To help your clinician understand what your symptoms have been like between appointments, many people find that tracking their symptoms is really helpful. There’s lots of options out there nowadays to be able to track your back pain, fatigue symptoms, or other joint-related symptoms like swelling. We will link a number of options below that might be useful for you and do discuss it with your clinician.

I think the best thing you can do to prepare for your appointment with your healthcare professional is about a week before the appointment, take a piece of paper and jot down any questions you may have and also any changes you’ve had to your condition or to your symptoms. As that can be really helpful to unpick in the consultation. Be sure to also bring along any blood test results or any other investigations you’ve had elsewhere, for example with your GP, as sometimes your healthcare professional may not have access to these results in hospital. Remember to obviously dress in comfortable clothing that can help facilitate examination, that can be really helpful. And finally I think the biggest thing is just to be honest and open with your healthcare professional, because actually having that open conversation and understanding what really is affecting you and how your disease is affecting you, can really help make better clinical and treatment decisions.

Hi, my name is Mo, and I’m an Extended Scope Physio at Newcastle Hospitals and a member of the AStretch Committee, a group of physios with special interest in axial SpA. To get maximum benefit from your rheumatology appointments, we want you to ask questions and we need you to tell us what is important to you. It’s all about shared decision-making. Recent NHS initiative talks about ‘ask three questions’, as there may be choices around and about your treatment. What are my choices? What are the pros and cons of each choice and each option for me? And how do I get support to make sure that I make the right decision for me? It is important to us to know what is important to you. If it helps, bring a friend along with you to your appointment.

If you have an upcoming appointment in your clinic, then it’s important to remember that your healthcare professional is here to help you. In order for you to get the most out of your upcoming appointment, please take some time to reflect, think, and write down what you wish to discuss at this appointment. This could include your symptoms, such as pain, fatigue, reduction in sleep or ability to work. Or you may wish to discuss about results of recent investigations such as blood tests or scans. Or to discuss about the treatment that you’re receiving and proposed future treatments, as well. In second half of your consultation, it will be useful to discuss what your goals are following treatment. This could include following treatment with medication or other interventions, such as physiotherapy, and also exercise. And how these can affect your symptoms to improve them, including your pain, your fatigue, and how to improve your sleep, and also work. If you’re able to prepare along these lines, this will ensure that you get most out of your upcoming appointment and it’s beneficial for both yourself and also healthcare professional.