This is your guide to coping with the emotional and practical effects of hidradenitis suppurativa (HS). It offers ideas for how to manage difficult thoughts and feelings that come with living with HS, and will help you think about how to make choices that could improve your quality of life. It may be particularly helpful if HS is affecting your daily life and you are feeling upset by the condition.
HS is a chronic skin condition that can affect people physically, emotionally and socially. It causes abscesses and scarring on the skin, commonly around the groin, buttocks, breasts and armpits, although it can affect other areas as well. It is believed that between 1% and 4% of the population has HS. It is possible that many more may have the condition, but have not felt able to tell their doctor about their symptoms.
You can find more information on the NHS website about what HS is, what causes it, and how to manage symptoms.
On this page
Section 1 | Living with the effects of HS
Living with a chronic skin condition like HS is not just about managing physical symptoms and flare-ups. Living with a recurring, painful and sometimes visible condition can impact your emotions, social life and relationships. It can also affect the way you see yourself, the world and the future. Below are some of the more common experiences and reactions that people living with HS might have. Some may be familiar to you, while others may not.
HS is associated with a number of uncomfortable and unpleasant symptoms. How often and how badly these happen will vary from person to person, and from flare-up to flare-up.
- visible lumps and abscesses
- pain and discomfort
- discharge (pus) from the lumps, sometimes with an unpleasant odour
- infection (but remember that not all abscesses with discharge are infected)
- visible scarring
- unwanted side effects of the medicines used to treat HS, for example they may cause weight gain and fluid retention, or antibiotics may cause yeast infections (thrush)
- acne or unwanted excess hair (hirsutism)
- pain or discomfort because of treatments such as surgery
- difficulty sitting or moving about due to painful lumps
- fever, fatigue and sleep disturbance.
Shame and embarrassment: Because HS can be a visible illness with sometimes unpleasant symptoms, there may be times when you feel ashamed or embarrassed. You may have to deal with other people’s misunderstandings about the condition (the idea that it is contagious, for example) or be worried about what other people might be thinking (that the condition is in some way your fault because of your lifestyle or your personal hygiene habits). This may even have stopped you from telling your doctor about your symptoms, meaning a delay in getting a diagnosis and treatment.
Anger and irritability: You may feel angry about having this condition and about the limitations it puts on your daily life. You may also feel irritated when a new lump develops or when you have to deal with symptoms such as pain and discharge. For some people, it can take a long time to be diagnosed with HS. This can also lead to frustration.
Depression: Living with a chronic health condition can increase your chances of experiencing low mood or depression. You may have opted out of hobbies, social outings, or intimate relationships because of HS. At times you may feel bad about yourself and the future. Perhaps others have not always been kind or understanding about your HS. All of this can contribute to low mood and depression. If you are experiencing depression and have had thoughts that your life is not worth living, it is important to see your GP, tell a healthcare professional or attend your Emergency Department (A&E), particularly if you think you might act on these thoughts.
Anxiety: You may experience a range of worries that cause anxiety and stress. You may worry about the next abscess or about the condition getting worse over time. You may worry about how the condition is affecting you now or how it might affect your work life, family life and close relationships in the future. Also, you may feel worried and anxious about what other people might be thinking about you, whether you are right about this or not.
Feeling disappointed or disheartened: If you have had surgery and followed all of the medical advice given to you, but are still suffering recurrent symptoms of HS, you may feel disappointed and disheartened, and may begin to feel helpless.
How HS affects your day-to-day life
HS can stop doing things you enjoy doing. You may have avoided hobbies or social situations in case other people notice your symptoms. You might have turned down an opportunity at work, like giving a talk or taking the lead on a project. Maybe you avoid physical closeness with friends and family, or being intimate with sexual partners.
In the short term, this can work well because you do not have to face difficult situations like worrying about what other people think. However, over time this strategy can lead to isolation and boredom. It can make you feel worse physically and emotionally because you are missing out on opportunities for pleasure, fun, activity and achievement.
Your HS may also mean that you have to do things you would rather not do. These might include:
- Avoiding moving about due to painful lumps.
- Spending lots of time trying to cover up the abscesses or scars.
- Having to choose your clothes carefully (for some people tight clothes can affect their HS symptoms)
- Having to be careful about the products and cosmetics you use.
- Missing work, school or college due to flare-ups.
- Changing or postponing activities you were looking forward to when the symptoms are bad.
Having to make these changes may lead to lots of different reactions such as feeling frustrated, overwhelmed or downhearted. On the other hand, you may have come to accept some of these adjustments.
How HS affects your thoughts and beliefs
People with HS say that they have other upsetting thoughts and beliefs:
- Thinking that you aren’t in control
- Thinking that you are helpless or that the situation is hopeless
- Thinking negatively about how you look and about your body
- Believing you cannot cope with the condition
- Assuming that you are going to get negative reactions from others, even before it happens.
The way we make sense of our experiences depends a lot on what we think about them. Positive, 'glass half full' thoughts may be really helpful for us to get through difficult times. In times of stress, however, our minds often come up with worst case scenarios and we see things in very black and white ways.
Here are some examples of thinking styles, which we all fall into at times, and are usually unhelpful.
Examples of thinking styles
Examples of thinking styles with anxiety
|Thinking-style||Thoughts associated with feeling anxious or worried|
|Thinking the worst
||'This flare-up is so bad that I’ll have to take time off. If I take time off, I’ll definitely lose my job.'
||'That person thinks I don’t wash properly or that I don’t take care of myself.'
||'I’ve got a new abscess and I haven’t had one in ages. That means I’ll definitely get loads of abscesses this month.'
|Jumping to conclusions
||'The doctor raised her eyebrows and I think she looked shocked when she examined me. That means I’m untreatable.'
Examples of thinking styles with low-mood
|Thinking-style||Thoughts associated with feeling low or depressed|
|Discounting the positive
||'My symptoms haven’t been so bad since I stopped smoking, but it’s probably a fluke and soon they’ll be back.'
||'I can't do anything right.'
|Pressurising language (should and must)
||'I should be able to cope with this by now. I must get on top of this.'
|Black and white thinking
||'I can only get on with life when I get rid of this condition completely.'
||'If only this didn't run in my family.'
Vicious and virtuous cycles
The ways that your body, thoughts, feelings and choices can be affected by HS are all linked. This means a change in one area can have a knock-on effect in another area. For example, the way we think about situations affects how we feel physically and emotionally, as well as affecting what we choose to do. Some of these thoughts, feelings and choices can help us (virtuous cycles) and some can keep us stuck (vicious cycles).
Example of a vicious cycle
Amy has been living with HS for 10 years. Early on, some insensitive people at college made rude remarks about a visible scar and made fun of her when an abscess leaked through her t-shirt. Since then she has socialised very little, except with people she knows very well, and waits until she is symptom-free before trying new things. As a result, she does not get to try new things very often and has never had the chance to find out whether new people she meets will be just like her old classmates at college or not. She often feels fed up and sometimes very low in mood. When she feels low, she often thinks ’I can’t be bothered. What’s the point anyway?’ and decides to stay at home.
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Section 2 | Looking after yourself physically
Explore areas of day-to-day life where you could experiment with making changes. Taking action for your physical wellbeing may help you to live your life more fully.
Eating well and exercising
Eating well and keeping active can help to reduce stress and physical tension. It can also help you maintain a healthy weight, which is particularly important for people with HS. Try to eat a well-balanced diet and do regular exercise if you can.
Think of an activity that is manageable for you and your current HS symptoms. Make sure it is an activity you enjoy. For example, you could try walking part or all of the way to work. If you have not been active for a while, you might need to take this quite slowly.
If you are having a particularly bad flare-up which affects your ability to move about more than usual, you may need to reduce your activity for a short time, building up again as the symptoms start to improve.
Sleep and rest
Allow yourself enough time for sleep and rest, but try not to worry if you are not sleeping well. Having a regular bedtime, and allowing time to wind down before bed can help. Try to resist any temptation to have a few alcoholic drinks at bedtime or to rely on caffeine during the day. This will only make you feel worse in the long run.
Changing smoking habits
For some people with HS, quitting smoking can help with some aspects of their condition. Quitting smoking can be very challenging and you may wish to seek some support from your doctor. As a first step, you might consider cutting down on the amount you smoke. If you would like to give up smoking, call our stop smoking service on 020 7188 0995, or call the NHS Smoking Helpline on 0300 123 1044
Designing a self-care routine
There may be certain things you can do to ease the discomfort of HS and manage the symptoms. These include applying a hot flannel to the affected area, taking any medications as prescribed, using any recommended treatments such as antibacterial washes, or making adjustments to your clothing. There may also be things to avoid, like certain lotions and skin creams, which may make your HS worse. Try to figure out which of these strategies works best for you.
Take advice from your healthcare professionals and learn from your own experience. Using this information, draw up your own HS self-management plan. This may help you feel more on top of your HS and better able to manage.
Learning to relax
Learning how to relax can help the mind and body. You can try out different things until you find one that works for you.
Tips for relaxing
- Listen to relaxing music or recordings of ambient sounds, like waves crashing or rain falling. You can download free apps on your smartphone, or CDs of white noise or other relaxing music are widely available.
- Spend 5 minutes focusing your attention on the rhythm of your breath.
- Use meditation practices, or prayer if you are religious, to relax.
- Imagine being in a peaceful scene, such as a beach or woodland – notice what you can see, hear, touch, taste and smell.
- Gently tense and relax different muscle groups in your body until your body feels physically relaxed – for detailed instructions, search for Progressive Muscle Relaxation (PMR).
- Stop rushing around during the day and leave plenty of time for your planned activities.
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Section 3 | Looking after yourself emotionally
Living with a chronic illness can have emotional as well as physical effects. This is common and understandable. If you are experiencing some or all of the emotional effects described earlier, you are not alone.
Being frustrated, anxious or low is not a sign that you are not coping or are not a strong person. Many people feel this way when they are managing a condition day after day. Remember, looking after yourself emotionally is as important as looking after yourself physically.
Understanding what you are feeling
It's good to try to understand what you are feeling first. These steps should help:
First, try to become aware of the particular feelings or emotions you are experiencing. Noticing them and being able to name them (sad, grumpy, irritable, anxious, overwhelmed, stressed, happy, excited, and so on) is a good first step. There is no need to try to change them. Just feel your emotions exactly as they are.
Next, ask yourself what triggered the feeling. Was it a thought, a memory or an image? Maybe it was something someone said or did, or a physical sensation. Once you know the triggers, it can be easier to understand and manage your feelings.
Finally, write them down, exactly how you felt them.
Coping with difficult feelings
Talk to a trusted friend or healthcare professional about how you are feeling. They may have suggestions about how to cope. You could also join a support group for people with HS.
Think about times in the past when you have managed difficult feelings during tough times. What strategies did you use? Were they helpful (in the short term or the long term)? Could you use them now?
If these emotions make you feel bad, you may wish to get rid of them. Sometimes people try to get rid of unwanted feelings by using food, drugs or alcohol, or by using other strategies, such as keeping very busy. While these strategies may help in the short term, they often have unhelpful consequences in the long term.
Getting rid of feelings (positive or negative) is actually very difficult, so using your energy in this way may not help you. Instead, try just noticing your feelings without trying to change them. This is part of a practice called mindfulness.
How mindfulness can help
When you are upset or feeling physically unwell, it is common for your mind to come up with lots of different, sometimes strong, feelings. Your mind may also come up with different thoughts, images and memories. Often we can get caught up in reacting to these thoughts and feelings. Or we get stuck trying to get rid of them, often without much success. As an alternative, try taking a curious attitude towards whatever you are experiencing right now, including thoughts, feelings and sensations. Just notice them without judging them or trying to change them. This approach is called mindfulness.
Being mindful of your experiences is a very different way of paying attention, and it takes practice. There are many books, free YouTube videos and online audio tracks, CDs and apps about mindfulness that you can explore to see if mindfulness works for you.
Exercise: Try these steps for being mindful
- Focus first on your breath.
- Pay attention to the natural rhythm of your breath.
- Notice the rise and fall of your chest and stomach.
- If the focus of your attention shifts to parts of the body that are uncomfortable, or are affected by HS, gently invite your attention back to the breath, focusing instead on the part of the body in which you feel your breath most intensely.
- Notice how the breath feels coming in and out of your nose.
- Don’t be concerned if you notice that your mind has wandered off. Briefly note what grabbed your attention (a thought, feeling or sensation), and then bring your focus back to the breath.
Challenging your thoughts
Thoughts pop into our minds all through the day. They can be pleasant, unpleasant or neutral. The mind is a bit like a storyteller or a narrator, commenting on what is going on. Sometimes the mind comments in helpful ways, drawing our attention to interesting or pleasant things, reminding us of happy memories from the past, or alerting us to things we have planned to do in the future, like phoning a friend or going to the post office. During times of stress, however, the mind can be less helpful. It might interrupt us with unpleasant memories from the past or scary predictions about the future. Confusingly, these thoughts are not always facts, even though they may seem convincing.
You can respond to your thoughts with 2 steps. First, notice your thoughts. What is your mind saying? Second, you can either challenge the thought - or be mindfully aware of it.
You can challenge your thoughts by asking yourself the following questions.
- What makes me think this thought is true?
- Is there anything to suggest that this thought may not be true?
- Is there another way of looking at this?
- Based on the evidence for and the evidence against this thought, what is the most logical or balanced alternative perspective?
- If a friend I cared deeply about, or someone else with HS, had this thought about themselves, what would I say to them?
No one can stop unwanted thoughts from coming to mind but challenging your thoughts can help you to see things from a different perspective, which may help you feel better able to deal with them.
How thought-challenging can work
Amy was invited on a holiday in the sun with some close friends, as well as some people she didn’t know well. She immediately had the thought, ‘As soon as they notice my scars and abscesses, they’ll think I’m disgusting and avoid me. The holiday will be ruined. When Amy’s close friend, Shabnam, heard that she was thinking of dropping out of the holiday because of these worries she suggested trying out some thought challenging. Shabnam had found this helpful when she was trying to overcome panic attacks a couple of years before. Although Amy was unsure, she decided to give it a try. When she noticed the negative thought, she worked through the steps (mentioned previously), which she kept in her wallet. She came up with a couple of alternative thoughts – a logical one and a compassionate one:
Amy's logical thought
‘Even though it is likely that they will notice my scars, it is not necessarily true that they will find them disgusting and I can’t know for sure whether they will avoid me until I go there and find out. As well as that, half of the group are people I do know and like, so the trip won’t be totally ruined, even if it’s not as I had hoped.’
Amy's compassionate thought
‘It’s understandable that I’m worried about how other people might perceive me because of the horrible experiences I have had in the past, and it’s OK to have a wobble and feel like backing out. But the kindest and best thing I can do for myself is to focus on the people I do like and trust, and think about all the good things I can get from this holiday.’
Being aware of your thoughts
If challenging your thoughts in this way does not work for you, or if you would like to try something different, you could use a mindful approach to thoughts. Try these steps:
- First notice the thought that has popped into your mind.
- Try not to judge the thought as good or bad. Just notice it.
- You could even thank your mind, the storyteller, for its contribution to your day.
- Then ask yourself, is this thought a helpful one? If so, perhaps pay attention to it and act on it.
- If it is not a helpful thought and your experience tells you that these thoughts make you feel bad and keep you stuck, just observe the thought instead of reacting or responding immediately.
- It might help to imagine the thought being a headline on the kind of newspaper that prints exaggerated and sensationalised stories.
- Then let the thought pass, like leaves on a stream or cars passing by outside your window.
The risk of becoming over-aware
Being aware of your body can help you to make wise choices, but being over-aware can make it hard for you to focus on other things. This can mean you miss out on fully enjoying the good things in life. Being over-aware can also cause you unnecessary worry and distress, which can make your symptoms feel worse. It can help to put your feet flat on the ground and simply notice how it feels. You can also try focusing on what you can see and hear in the world around you.
How making a plan can help
Deciding what to do and planning to lead a fuller and happier life takes work. You will need to establish what your goals are and then think carefully about how best to achieve them. This section gives some hints and tips on how to start planning your course of action.
1 | Do what matters
When you're having a hard time physically or emotionally, it can make you feel like opting out of doing things, such as exercise or socialising, for example. Avoiding these things may seem to help in the short term, but can lead to missing out on the things that really matter to you in the long term, like close relationships or good health.
Try to ask yourself what things matter to you most. Perhaps it is family, friendships, your health, your work or your hobbies, for example. Try to do something most days that keeps you moving in the direction of what matters to you most. Usually there is more than one way of doing this, so you might need to try out new approaches if your old strategies no longer work.
2 | Do things you enjoy
Look out for opportunities for fun, laughter and pleasure. This could mean meeting a friend who makes you laugh, watching a repeat of a comedy show you know you find hilarious or making time for things you really relish, like an afternoon of watching football or a soak in the bath. Also, try to do things that will give you sense of satisfaction when you are done. Try to notice whether these activities have an effect on how you feel in your mind and body.
3 | Making changes: Goal setting and problem solving
Making changes, such as quitting smoking or taking steps towards losing weight, can be difficult. Many people don’t know where to begin. If you are in this situation, try to set a specific goal. Goals are easier to achieve if they are SMART.
If you notice that you keep on encountering barriers to your goals, and are struggling to overcome them, it may help to use a problem solving approach.
Problem solving is a step-by-step way of overcoming barriers to your goals, and can work in many situations. Using these steps can help when you feel overwhelmed and do not know where to begin. They are particularly useful if you are facing multiple problems. You may find it helpful to do this together with your healthcare professional, who may have some helpful ideas from their professional experience to add to your own thoughts.
Exercise: Make a SMART goal
Specific – What exactly do you plan to work towards? When, where, how, with whom?
Measurable – How will you know you have achieved it?
Achievable – Try not to set goals that are so ambitious that you set yourself up to fail. This is usually unhelpful and disheartening.
Relevant – Is this goal meaningful and important to you?
Time-limited – Decide when you want to have achieved the goal by. Is it a short-term, medium-term or long-term goal?
Write your SMART goal down. Share your intention to work towards this goal with a trusted friend, family member or healthcare professional. When you achieve your goal, give yourself a reward – something you would enjoy, like a cinema trip or a favourite meal. If you have a setback and do not manage to achieve your goal, try not to give yourself a hard time. Think about what got in the way so you can be prepared if you encounter this barrier next time. If you think you may have set an unrealistic goal (one that was too difficult), reset your goal, making it more achievable. Then re-commit to the goal, rather than giving up on it.
Exercise: How to problem solve
Here are the key steps:
- Define the problem. What exactly are you up against? Try to complete this sentence: ‘The problem I am facing is__________’.
- Prioritise. If you have several problems, write a list. Choose two or three problems from the list and order them from least important to most important. Put a circle around the one you have chosen to work on. If you find your mind wandering to the other problems, gently remind yourself that for now you are focusing on just one problem at a time.
- Ask yourself ‘Is this a problem I can do something about, or is it outside of my control?’ Some problems cannot be solved by individuals, despite their best efforts. Public transport being on time, the weather or the choices and behaviours of other people are examples of things that are outside of your control. If you believe that there is something you can do about the problem you are facing, continue following the steps below.
- Make a list. List as many possible solutions to the problem as you can. Write down everything from the most simple to the most farfetched and funny. This will help you to start thinking flexibly and considering lots of options.
- Choose one. Take a step back and review the solutions you have come up with. Which one do you believe will help you to move closer to solving the problem? Try to choose something from your list that is both manageable and realistic.
- Make a plan. Decide when, where, and how you will carry out the solution you have chosen. Try to be as detailed as possible. Write it down and put it somewhere you can see it.
- Beware of jumping ahead or getting side-tracked! It is common to start off enthusiastically with these steps and then get distracted by other things. To give yourself the best chance of success, put a reminder in your phone or tell a friend what you are planning to do. Also, it is common to unintentionally skip some steps and jump into doing things. Try not to fall into this trap. The steps are an important tool for helping you approach problems effectively and for helping you learn from what went well and what did not go so well.
- Now do it!
- Review how it went. Did it go to plan? Did it move you closer to solving the problem? If it did not go to plan, perhaps you can break the solution down into smaller, more manageable parts, or go back to the list to choose another option.
- Repeat. If the problem is not yet solved, go through these steps again.
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Section 4: Communication and relationships
Living with HS can be difficult to explain to others. This could cause difficulties with work colleagues, with friends or in intimate relationships. However, trying hard to avoid talking about your HS can be a source of further stress for you, as well as a source of confusion for others. Remember, even though your mind might be trying to convince you that people would be unkind, or reject you if they knew, this may not be true.
Improving communication with people around you
As a first step, consider finding ways to explain your condition to people that you feel comfortable with. Practice saying the sentences in advance with a friend, family member, healthcare professional or some else with HS. Keep your explanation short and to the point. This will help to dispel any myths people might hold about your condition, such as ideas that it might be contagious or due to poor personal hygiene. It will also make it easier to explain your condition to people you are not as close to, such as work colleagues.
Example of explaining a symptom
Andrew is a 32 year old man who has been living with HS for about 15 years. He has a particular difficulty managing the odour related to his HS. Despite his best efforts, there are times when this odour is noticeable to others. For many years, Andrew was so embarrassed by this that he would try to get out of the situation as quickly as he could. However, after many missed opportunities, he came up with another way of managing. When the odour became noticeable and other people were around, he would say with a grin, ‘Before you give me a bar of soap, I know I don’t smell of roses. I have a medical condition’. He discovered that most times people reacted with a nod and a smile. But there were sometimes a few who didn’t know how to react, or were rude and unfriendly.
Improving communication with your partner
People with chronic skin conditions can and do form and maintain close, intimate relationships even though at the outset they might have believed that this was not possible. Even though it may seem difficult at first, try to be open about your condition and how it affects you physically and emotionally.
If you are worried about your partner discovering that you are having a flare-up, and being shocked or put off by it, try to be upfront and tell them about it. This may take some of the pressure off. Being upfront in this way will also allow you and your partner to make adjustments in your physical relationship for your comfort and wellbeing. This might include changing the position in which you have sex or postponing sex until your flare-up has subsided.
Try to think broadly and flexibly about what intimacy means for you and your partner. There may be times when cooking a special meal together or curling up on the couch with a favourite film can create intimacy and closeness when you are bothered by pain or inflammation.
Try not to make guesses about what your partner may be thinking or feeling. If you are unsure, perhaps you could ask them.
Improving communication with healthcare professionals
You also may wish to improve communication with your healthcare professionals. For some people, going to see their GP, nurse or consultant can be anxiety-provoking or embarrassing. Other people feel so bad about taking up too much of the doctor’s time that they don’t bring things up or they say that everything is fine when it may not be. This can mean that you don’t get what you need from the meeting and it also prevents your healthcare professional from having a full understanding of your needs.
Try to prepare for your consultations in advance. Write down the things you would like to discuss. Remember that you can bring up the impact of the problem on your life as well the medical side of things. When you arrive at your consultation, it is a good idea to look at the list with your doctor or nurse so you can decide how best to use the time. They may invite you back for a second consultation if all of the topics cannot be covered in one slot.
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Section 5: Getting help, support and useful information
Living with HS can be a challenge. The effects of HS are not just physical – HS can affect your emotional, social and interpersonal wellbeing. How you think about your HS, how you feel about it and what you choose to do or not do because of it, are all linked and contribute to how much HS impacts on your life. This means that understanding your thoughts, feelings and reactions can help you to make choices that will keep your life moving in the direction you want it to go. This is not always easy. This information has offered some suggestions about how to manage life with HS. Some may suit you better than others.
You may wish to choose a few strategies to try out, perhaps with the support of someone you trust. If, after trying some of these suggestions, you continue to feel stuck or very distressed by your experience of HS, talk to your healthcare professional about getting some additional support.
Organisations offering support
Guy's and St Thomas' hidradenitis suppurativa service specialises in diagnosing and managing HS. We are able to offer you the best in support and guidance, because we understand how debilitating and life changing this condition can be.
The HS Trust is an excellent source of information, support, and advice about HS. The charity is dedicated to the raising of awareness, understanding and support.
Changing Faces is a UK charity for everyone with a scar, mark or condition on their face or body that makes them look different. Changing Faces offers advice, support and psychosocial services to children, young people and adults.
If you have any questions or concerns, please contact your clinical nurse specialist (CNS) using the details given on your CNS contact card or medicine booklet. These details can also be found at the top of your clinic letter.
Ref number: 3945/VER3
Date published: November 2021 | Review date: November 2024
© 2021 Guy’s and St Thomas’ NHS Foundation Trust
A list of sources is available on request
This information has been produced as part of the IMPARTS programme. IMPARTS stands for Integrating Mental & Physical healthcare: Research, Training & Services which is an initiative to integrate mental and physical healthcare in research, training and clinical services at Guy’s, St Thomas’ and King’s College Hospitals, as well as South London and Maudsley NHS Foundation Trust.