Question 01 - Contact details of healthcare professionals Expand Provide the contact details and date of your last appointment for all health professionals you have seen in relation to your EB, including: GP Psychiatrist, psychologist, occupational therapist Carer – details of informal carers (e.g. parent) can be included in Question 15 Social or support worker (including DEBRA EB Community Support Manager) Hospital consultant(s) and/or EB nurse Other health professionals for other (non-EB related) health conditions It’s okay to only provide the year and month or approximate date if you do not know the exact date of your last appointment.
Question 02 - Your health information Expand a) Your health condition(s) List all current physical and mental health diagnoses (formal and informal), including the year it started. These should be listed starting with the most recent diagnosis and working backwards over time. The following is an example: Health condition(s) or disability Year started Depression 2020 Anxiety 2004 Fatigue - extreme tiredness 2000 EB Simplex Formally diagnosed in 1993 but present since birth You do not need to expand on these in this question; you can do this in questions 3-15. If you have not been diagnosed, explain why and list the primary symptoms associated with your condition(s). You will be asked to provide evidence to support your undiagnosed condition(s). b) Your medication or treatment List all paid-for and/or prescribed medications, tablets, treatments, therapies and dressings. It is helpful to include any additional prescribed medications you are not taking due to side effects. You should also include any non-prescribed treatments and home remedies that help your condition, such as soothing footbath, silver socks or sitting in front of a fan to cool your feet.
Question 03 - Preparing food Expand This question is asked to understand your ability to safely make simple meals; it does not consider your cooking skills. Your condition(s) may affect your physical or mental ability to make yourself regular, cooked food every day. Answer in relation to yourself only, not including other members of your household. General How much extra time do you need for preparing and cooking food and why? (e.g. pain relief, cannot use hands well) Do you have a special diet? What can’t you do? (e.g. lift dishes out of the oven) Why? Do you need to sit down, use a stool or another aid? Does your illness or medication affect your ability to make or prepare a meal? Do you tend to buy pre-prepared food or ready meals? Are you able to afford the cost of three meals a day every day? Preparing food Are you able to open packaging? Are you able to peel, chop and carry food? Are you able to use a cooker, hob or microwave for cooking or heating food? Do you need to use aids or appliances to perform any of the above? Cooking meals Does the heat in the kitchen affect you? Do you need someone to cook for you? Do you need help following cooking instructions? Do you often lack the motivation to make meals? Do you become distracted when cooking? Does it take you longer than is recommended on a recipe to make a meal? Relating to EB Are you able to carry or lift heavy dishes/pans? Does pain mean you are likely to drop hot pans? Do you have to use adapted utensils? Do you have to take any special foods or food prepared a certain way? Do you have to take any additional supplements? Does cooking cause blisters or skin fragility? Do you have a gastrointestinal (GI) feed? If you are unable to do something, it is important to explain why and what you have to do to overcome the challenge or if you avoid it. Think about how differently you do things compared to someone without EB.
Question 04 - Eating & drinking Expand General How often do you need to eat and drink? Do you often miss meals or not get enough to drink? Do you refuse or forget to eat and drink? Do you need someone to remind you to eat and drink? Do you have an eating disorder? Does your medication cause side effects that make it difficult to eat and drink? Does eating or drinking cause you anxiety or panic attacks at home or in public? Eating and drinking Do you have smaller meals more frequently or adjust your mealtime patterns? Do you eat with others to avoid this? Do you have to follow a special diet (e.g. soft foods)? Do you have to avoid certain foods (e.g. coeliac)? Do you require foods to be at certain temperatures? Are you able to cut your own food? Who else needs to help you or how much longer does it take you? Are you able to put food in your mouth yourself? Are you able to chew and swallow? Does it take you longer to do this? Relating to EB Does eating or drinking cause you pain? Do you suffer from reflux? Are you at risk for choking and therefore need to be supervised? Do you need more calories for wound healing than an average person (mention your dietician and their advice, if relevant)?
Question 05 - Managing your treatments & therapies Expand 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?
Question 06 - Washing and bathing Expand General Does your condition(s) mean you do not wash or bathe as regularly? Do you need to sit down in the shower – either because you cannot physically stand or because your medication causes you to feel lightheaded? Do you require any adaptions, such as a stool, bath board or handrails? If you do not have adaptions, do you balance on bathroom fittings? (e.g. holding the sink or edge of the bath) Do you need reminding to wash or bathe? Do you need someone to stay nearby to supervise in case of a fall? Are you able to wash your hair and all parts of your body? Relating to EB Does someone have to help you bathe or remove dressings in the bath or shower? How long does it take to wash your skin, including rest periods and time spent checking for blisters/infections? Do you have to apply any special creams or ointments during or after your bath or shower? Do you have to do anything special to dry after a bath or shower? (e.g. pat dry) Who helps and how long does it take, including rest periods? Do you have to use any special fabrics or soft towels? Do you require pain relief during or after your bath or shower? Does removing and changing your dressings cause you pain and distress?
Question 07 - Managing toilet needs Expand General Are you able to get on and off a toilet seat? Are you able to clean yourself after using the toilet? Does your medication(s) cause incontinence? Do you have to have an aid to help manage incontinence? Who helps and how long does it take? Do you require any toilet adaptations? (e.g. cushioned seat, handrails) Do you hold on to furniture or sinks or position yourself carefully and/or slowly? Is your sleep interrupted because you have to frequently use the toilet at night? Relating to EB Does it take you longer to get to the toilet? How long does it take to go to the toilet? Do you have an issue with constipation or with a long time sitting that could cause skin damage? Do you experience pain due to any blisters around your bottom area? Do you experience distress when passing a stool due to pain or bleeding? Do you have to check, remove or change dressings after each toilet use? How do you clean your bottom area after each toilet use? Who helps and how long does it take, including rest periods?
Question 08 - Dressing and undressing Expand General Do you find it difficult to dress yourself? Do you require help getting dressed and/or undressed? Who helps and how long does it take, including rest periods? Do you lack the motivation to dress yourself? Do you find it difficult to decide appropriate clothing for the time of day or weather? Are you able to keep your clothes clean? Relating to EB If you do not have nails, do you find it difficult to manage with buttons? Do you need help with zippers, buttons or laces? Who helps and how long does it take – including rest periods? Are you restricted to wearing certain fabrics, which makes you choose clothes carefully? Do you have to alter your clothes or how you wear them? (e.g. inside out, cutting neckline) Do you have to do anything special to make sure clothes are soft enough for you to wear? If applicable, are you able to wear a bra or do you have to make any adjustments for this? Do you have to do anything special to wear socks or shoes? Are you able to wear socks and shoes? Does this cause you any additional pain or distress? Do you have to wear clothes over your dressings? Does removing clothing cause pulling on your skin or bleeding? Do you cut or soak your clothes to remove them? Do you have to change your clothes multiple times a day? Do you worry about your wounds making you smell or getting creams and ointments on your clothes?
Question 09 - Communication Expand You will be assessed about your ability to speak, hear and understand others in your first language. General Does your condition(s) or medication(s) make it difficult for people to understand you? Do you have anxiety when speaking to people? Are you able to understand other people? Is it hard for you to concentrate when speaking to people? Are you easily confused when something is explained to you? Do you feel confident you understand body language or verbal queues? Are you visually or hearing impaired? Relating to EB Do you have blisters (or a tracheotomy) that make it painful to speak? Do you have any eye problems that make it difficult to maintain eye contact or use your eyes normally? Does your pain affect your ability to pay attention to others in a conversation?
Question 10 - Reading Expand General Are you able to read information that is a standard text size? Are you able to read road signs? Are you able to read both indoors and outdoors? Are you able to read and understand your utility bills? (e.g. gas/electricity bill, bank statements) Are you able to follow simple written instructions? (e.g. taking your medication) Relating to EB Do you have any eye problems that make it difficult to maintain eye contact or use your eyes normally? Does your pain affect your ability to understand what you read or have read?
Question 11 - Socialising Expand General Are you confident meeting new people or do you need someone with you when you meet people you do not know? Are you able to judge situations where someone may or may not be behaving appropriately? Are you able to make friends? Do you feel anxious in social situations? Do you try to avoid meeting new people or interacting with others? Do you feel anxious when having to call people you do not know? (including agencies such as the DWP or social services) Do you try to isolate yourself even though you may feel lonely? Relating to EB Do you find it difficult to talk with others about your EB? Do you avoid talking to others about your EB? Are you anxious others are judging you because of your EB? Are you able to leave your home independently to mix with others? Do you avoid going out? How has EB impacted your ability to mix with others? (e.g. can’t keep up with friends, can’t attend the same places, need extra support, time to change dressings, smell of the dressings, can’t eat in front of others, require regular treatment/medicines, feel drowsy/tired/in pain, people don’t understand the condition, etc.) Do you feel stared at because of any visible wounds? Does this make you avoid going out?
Question 12 - Financial decisions Expand General Do you understand the value of money? Are you able to purchase items from a shop or restaurant - either in-person or online? Do you know how to budget for and pay your bills? Do you know how to save and budget for future purchases? Do you need help from someone to make bill payments? Are you able to budget and make sure you have enough money to buy essential items? (e.g. food) Do you have problems that stop you from paying any bills? Are you overly generous with your money and give it to others when you cannot afford to? Do you need someone to help you visit shops to make payment or to count change? Relating to EB Do you have to ask for money from family or friends to purchase your prescription medication(s) or dressings? Do you feel a lack of independence if you rely on someone else to help with money decisions? Do you find it hard to physically manage money? (e.g. putting in/taking out of purse/wallet)
Question 13 - Travel Expand General Are you able to plan and follow a route to a place you know? Are you able to plan and follow a bus or train route to a place you do not know? Are you able to cope in places that you do not know? Do you struggle to leave the house because of stress or anxiety? Do you require someone to go out with you – either to somewhere you know or do not know? Are you stressed or anxious when planning travel? If your journey is disrupted, are you confident planning and going an alternative route? Do you find it difficult to cope with large crowds or loud noises? Do you require encouragement from someone else to go out? Do you struggle to understand public transport routes? (e.g. train, bus) Do you require journeys to be accessible? (e.g. lifts, ramps, etc.) Relating to EB Do you have trouble getting people to understand and allow for your EB? (e.g. difficulty walking) Do you worry about the length of travel in anticipation of pain and/or not knowing where rest breaks might be located? Do you require additional considerations because of your EB? (e.g. wheelchair) Do you worry or feel anxious that someone may knock into and cause a blister whilst in public? Are you worried other might judge you whilst in public and on public transport? Does moving around and travelling cause you additional pain? Do you have to take additional medication(s) or bring extra dressings on your journey/trip? Do you feel a lack of independence if you rely on someone else to help you travel? Does it take you longer to travel, including rest periods? Do you experience increased pain overall due to increased stress and anxiety? What would help with travel that you don’t currently have and how would it help? (e.g. blue badge so you can plan where to park)
Question 14 - Getting around Expand General Are you able to stand without help? Are you able to walk without stopping and without help? Relating to EB What do you have to do to ‘save your feet’? (e.g. planning only essential walking to limit damage) How often are you in pain? What footwear do you have to consider? Do you require additional considerations because of your EB? (e.g. crutches, wheelchair) Do you hold on to furniture, position soft rugs to help in the home, crawl, bum shuffle, not walk at all, use family/friends to fetch things for you in your home or walk on the sides of your feet? How far are you able to walk? How many metres and how often do you have to stop/rest? Could you repeat this? (e.g. walk one day but unable to walk the next day due to walking the previous day) Are you in pain or do you have to take pain relief? What happens if you walk too much? Do you have to rest/stop for the rest of the day, a few days, a week or weeks? Do you still walk if you have blisters on your feet? Do you have to take pain relief for blisters that affect your ability to walk? Do you walk in an uneven way due to blisters and pain? How does this affect other areas of your body? (e.g. back, knees, hips) Do you ever stumble or fall due to pain or walking in an unsteady way due to blisters? Do you have any ‘home remedies’ to help with pain? (e.g. soaking feet in cold water) Do you have to wear any dressings or special shoes in order to walk? Do you require evaluation of your feet with a physio because of pain, gait alignment, etc.? Do you have to adjust your way of walking? Does the temperature affect your ability to walk? Do you have to limit how much you walk or how often? Do you have to plan ahead of time for this, including rest periods? Does your workplace or college/university make allowances for your restricted mobility? Are you restricted in the choices you have, such as where you go or what job you can do?
Question 15 - Additional information Expand Use this space to include additional information about your application and elaborate on your answers. Do not worry if you repeat yourself as this is common.