How to get the most out of your dermatology appointment 

Atopic dermatitis (AD) is a complex medical condition, and no two eczema patients present with the same symptoms.  Nor do they have the same triggers, though there can be commonalities. It can also become a lifelong chronic struggle so you  need to become an expert in your own skin and be prepared.

Getting an appointment or referral can be hard enough with long waiting lists and a shortage of  specialists. But once you've got a date and time in the diary, the really hard work begins. If you’ve ever come away from a hospital appointment confused and with unanswered questions, you’ll know where I’m coming from. It’s happened to most of us.

No matter what country you live in, navigating any appointment with your specialist can be hard work. You need to make sure you get seen, heard and understood so you’re happy with the treatment path provided for you.

I’ve had atopic dermatitis and chronic eczema all my life and have found it hard to get the help I needed. For instance, there was no adult service in my county, so I had to fight to see further afield at an already overburdened Dermatology Centre.  Because it’s not life threatening,it feels like AD is not taken as seriously as it should be; from my own experience it can take over many aspects of daily life and also become central to mental health too. With this in mind I’ve put together these tips and suggestions to help you find your way to the right treatment.

Getting that referral

If you haven’t yet managed to get a referral to a dermatologist, much of what is shared below will also be relevant, regarding research and preparation for your visit to the GP. Familiarise yourself with the NICE patient guidelines for your condition to help you understand what treatment is available and also what you’d like to try.  You have a choice, so don’t be afraid to refuse any treatment you’re worried about and ask for something else. I recommend you take a proactive approach and ask for details on anything you’ve researched or a new  drug or treatment you’ve heard about, don’t always wait for your doctor to recommend it.

Preparing for your appointment

Have a goal in mind - This can be daunting as you may not know what questions you have or what treatment you want.  Start to note down what symptoms you struggle with the most, what areas of your body flare and cause the most discomfort. What would be your ultimate goal? What are your most troublesome symptoms? Atopic dermatitis can be doubly difficult as it waxes and wanes, flares and heals in cycles and may not be at its worst for your appointment. If you can prioritise objectives for your own health, it makes it easier to work with a specialist towards the management or healing goals you want.

Triggers, health and nutrition - Think also about what you think your triggers are.  If you think food might be causing you skin problems, there may be a dietician you can get referred to. Keep a food, mood and symptoms diary for a few weeks prior to your appointment and go armed with the results. By recording the times of day and the situations that cause you the most discomfort, or the places and activities that seem to cause flares or symptoms to increase, could help you work out how to avoid issues and uncover answers.

Mental health and therapy - If you are finding your skin causes you a lot of anxiety, this is also something you might be able to get extra help with. Tell your dermatologist that you are interested in therapy; past trauma, depression, anxiety and low mood can have a direct impact on your skin health. A 2020 study⁽¹⁾ in the Journal of Allergy and Clinical Immunology, looked into Atopic Eczema in adulthood and the risk of depression and anxiety. They found that adults with atopic dermatitis are far more likely to develop depression and anxiety.  There are many different kinds of therapy so find out what’s available and then think about what would work best for you. 

Getting the right help to guide you towards finding a more positive mindset can really help with management and healing. If you are living with a lot of shame, anger, guilt and frustration that could well be playing out on your skin. Think of it as a canvas of your overall health - everything is linked; gut, brain, skin microbiome – a science we barely understand but more studies are being done.

Pain management – There are many pain medications available, and they can come with side effects and be addictive if used long term. Ensure you know the risks associated with any medication and ask your specialist for advice. Ask about local pain clinics as these are often available and will give you an opportunity to explore group therapy with others who have similar challenges. You may also benefit from one to one therapy to help you understand your pain, what it’s trying to tell you and what you can do to help manage the pain, through changing your lifestyle, getting further help or making use of resources available to make your life easier. 

Make a list of questions to ask

You don’t need to spend hours on this, just get an idea of what treatments you might be able to access. If you’re not sure, visit the NHS website and find the NICE guidelines for AD. Ask about the treatments you’d like to be considered for:

• Current Treatments – Guidance on the usage of topical steroids changed last year to advise only short term use. If you are worried about these creams, speak to your dermatologist about other treatments available. I am now 3.5 years into topical steroid withdrawal and healing well but this is not something I would recommend lightly. It’s not easy and won’t be relevant to everyone but if you notice more frequent rebound flares and potency of topical steroids increasing with less and shorter healing effect, discuss this with your dermatologist.
• Food Allergy skin prick tests – These can help to identify allergies which could be affecting your skin, breathing and atopic conditions.
• Patch tests for contact allergies – This is helpful for identifying allergens from your environment such as dust, perfumes, preservatives, chemicals etc.
• UVB light therapy – Can help some patients but is a big time commitment, requiring regular short visits, but can offer a great deal of short term healing and relief to some.
• Potassium Permanganate – A special treatment for oozy or wet eczema. This treatment needs specialist supervision so is not always offered but can help certain stages of atopic dermatitis healing.
• Respite care – If you’re really struggling, some specialist centres offer respite care beds where you can spend an extended time learning from specialists about what dressings, creams, treatments etc. might work for you, and some even come with an overnight stay.
• Paste bandages and wet wraps – These can be very effective at treating stubborn patches that will not heal. You should be able to get advice and guidance on how to do this at your dermatology clinic.
• Dietician referral – Eating a healthy and varied diet can make a huge difference.Working with a dietician could help you discover whether you have food sensitivities, allergies or need to avoid high histamine or salicylate foods, for instance. Food can be complex for atopic dermatitis patients, but certain foods can make things worse by causing extra inflammation and stress on the digestive system. Similarly, if you are constantly worrying about what food you eat that could be causing you stress that may affect digestion. It’s all about finding a healthy balance.
• Clinical psychologist – If you think your mental health is suffering and you are experiencing anxiety, depression etc. ask for some therapy.  There is no shame in working with a therapist and it can be very eye opening  to help you understand how you see yourself and your condition and uncover unhelpful and incorrect beliefs about worth, shame, guilt etc. 
• New treatments - Ask what treatments you are eligible for e.g. Immunosuppressants, Biologics, JAK inhibitors and get all the information you need to help you make the decision. Don’t be rushed into a clinical trial, make sure you’re ready and understand what’s involved and the potential risks. (Link to one of Rob’s blogs about clinical trials)
• Emollients – These can vary greatly from creams to thicker stickier emollients, and some may work better for your skin. E.g. Some people are even sensitive to paraffin, the base for most moisturisers for atopic skin, however there are now paraffin free alternatives and your specialist will be able to advise you.
• Blood tests - Testing for deficiencies and underlying conditions may be something you could consider. If you can get these done it could help rule out any undiagnosed deficiencies or irregularities or that may be having a knock on effect on your skin.
• Prepare your evidence - Take with you any pictures of your skin during flares or any reactions you’re worried about.  We all know how annoying it can be when you get to the day of your appointment and your skin looks great! You need to be firm and explain how hard you find your skin condition and having photographic evidence will really help.  Take photos in a good light or get a friend to take them so you can get good quality close up images. Also keeping a diary of what your skin is like can offer insight into what’s going on.

When agreeing on a new treatment

Ask as many questions as you can to ensure you’re happy about starting a new treatment, e.g.,

• When was this drug first approved? 
• What are the known side effects? 
• How long should I take it? 
• How should I wean off? And can you advise how to go about weaning off a treatment.
• How long till it starts taking effect? 
• What outcome should I expect?

I also ask, would you be happy to use this drug? It can help you feel they are being genuine and understand concerns you may have. You want to find the solution that fits your current situation. For instance, if you are risk averse you should choose a safer option. If you are desperate and feel you have run out of options, you may choose a new drug or clinical trial.

How to educate your dermatologist

Most dermatologists are very busy and realistically they may leap to the first response and the easiest solution. What we want to achieve is an open, frank and respectful dialogue with our specialist so that we can all work together towards a beneficial outcome.

Make sure they know what your goal is for your skin and what’s most important. It can be a good strategy to work on one thing at a time towards a healing goal.

Make notes to refer to and if you have found studies you’d like to discuss, take copies with you to share. Whilst your dermatologist has been seeing patients with atopic dermatitis for years, he/she hasn’t lived in your skin. You know your body and your own lived experience better than anyone. If you think they are not listening to your concerns, tell them. You have a choice how your skin is managed; you do not have to follow any treatment you’re not happy with. Be questioning and inquisitive and ask for alternatives.

Making sure you get taken seriously

If you feel like your specialist isn’t listening or dismissing your concerns, be firm and ask them directly for the treatment you would like. This is your skin, and you should be able to advocate for what you need.

• Make a list of questions before your appointment
• Take a notepad and pen to take notes
• Ask for clarification of any terms you don’t understand. For instance, words like excoriation, nodular prurigo, pompholyx can be confusing.  Ask for the spelling of the word and note it down so you can look it up afterwards. 
• Take a family member or friend for support – this can really help, just  having a second pair of ears. They can be there just as your wingman/woman and not take part or you could brief them beforehand if you think they will have good questions to ask too. Or simply if you don’t feel strong enough, they can ask questions for you.
• Make sure you don’t get rushed and review your questions to ensure you asked them all. Appointments and clinics can be very busy and often feel rushed. Use all of your allotted time and make the most of your appointment.

If you still leave feeling your concerns have not been heard, here’s what to do

• Get your dermatologist's email address – If you have questions left unanswered or further queries after you’ve left, most specialists will respond to you via email.
• Ask to see a different dermatologist. There is no shame in doing this, we should be able to choose the professional we work with, if their manner isn’t the best. Some specialists can be very blunt and it might be that a more sensitive dermatologist will be able to offer you better support.
• PALS – The Patient Advice Liaison Service is an NHS confidential advice, support and information resource where you can request a referral to a different centre or specialist.
• Make an official complaint – obviously a last resort but if you really feel unheard and are not happy with your treatment this is something you could consider. If we don’t speak out no one will know you’re experiencing issues and you may not be the only one struggling.

Learning from others

What’s important to remember is that you are not alone. According to eczema.org 1 in 5 children and 1 in 10 adults experience AD at some point in their lives.  A smaller percentage of these go on to experience life long and more chronic skin problems. So it makes sense to try to connect with other fellow eczema people. There are many ways to do this, via blogs, social media groups, and forums.

• Patient advocates - Find trusted patient advocates and ask them about their treatments and what they’ve found works. Obviously, they can’t advise you, but it can help to hear positive feedback on a treatment you’re considering. There are a lot of them out there on Facebook, Instagram, bloggers and Vloggers on YouTube. Get searching!
• Social media – There is a lot of activity on social media around atopic dermatitis and eczema and it can be hard to find the information you need and also very triggering for many patients. If you find it difficult seeing people share pictures of severe eczema then this might not be the right place for you to research. However, you may find people who understand what you’re going through and who can offer you support and friendship in what can be a lonely condition.  E.g. How do they manage the itch, sleep better at night, manage exercise when sweating hurts so much. Just remember, it is a particularly uncomfortable and life limiting condition and the passion, anger and fear can come across on social media channels. Limit your exposure and follow people you resonate with.  You can often learn about treatments that could help you be open minded but realistic.

Take control of your skin condition

I hope these pointers have been helpful at assisting you to become the patient advocate in your condition. Arming yourself with information can help give you peace of mind, knowing you are doing the best you can for yourself.  Acceptance and understanding can help you live with atopic dermatitis and help others find answers too.

It’s taken me years to get there, but I finally find myself on a healing path that I’m happy with but it took time and effort to really dig into what motivated me and research to learn more. Get proactive and take control of your skin healing.

References

Ref 1 - https://pubmed.ncbi.nlm.nih.gov/31479767/