Question 05 - Managing your treatments & therapies General Are you able to manage your own treatment or therapy? How do you monitor your condition(s), including mental health? How do you make sure your condition doesn’t worsen? How long does it take to check your skin for signs of infection or changes in skin that need to be reported to a nurse? Can you avoid becoming more unwell? Do you notice when your health changes – mental or physical? Can you manage your medication or home therapies (e.g. relaxation, meditation)? Medications Do you often forget to take your medication(s)? Do you need a pill organizer to remind you which medication(s) to take? Do you need an alarm or someone to remind you to take your medication(s) at the right time? Does someone need to supervise you to make sure you take the right medication? Have you ever taken an overdose on purpose? Relating to EB: Treatments Do you do any ‘home remedies’ to help with pain? (e.g. soaking feet in cold water) Does someone have to help you with your dressings or to apply ointments? How long does it take to change your dressings, including rest periods? Do you have to take pain relief before, after or during dressing changes? How much additional time do you allow for this, including time spent ‘coping’ with the pain? What are the treatments for your symptoms – pain relief, itch relief, dressings? Do you have to do anything special for your treatments? (e.g. cut a dressing to size) Who helps and how long does it take, including rest periods? Does it cause you pain or distress? Do you have to do anything special for washing your skin? (e.g. water temperature, checking for new wounds/infections) Who helps and how long does it take, including rest periods? Does it cause you pain or distress? Do you require emotional or psychological mental health support? (e.g. talking therapy) Do you require alone time? Do you have to attend specialist appointments in hospital or spend time in hospice care? Who helps, how long does it take (including rest periods) and how often do you go? Relating to EB: Symptoms Do you need help to lance blisters? Do you have blisters in ‘awkward’ places? How does itch affect you? What therapies and medications do you have to have and what are they for? (e.g. pain relief, food supplements, GI feeds, checking skin, ointments, baths, cool packs, using a fan etc.) Does having EB impact your mental wellbeing? Do you struggle to talk – physically or mentally? Do you need additional time to rest in between talking or moving around? Do you have eye problems (e.g. corneal abrasion) and need to spend time indoors or in the dark? Who helps and how long does it take, including rest periods?