Employment support

The information on this page has been written for people who have never been in employment or are thinking of changing roles – either through voluntary, part-time or full-time work. The section below lists some particular skills and attributes that you may have acquired through managing your EB, as well as how you can demonstrate these when applying for jobs even if you have never worked before.

If you need support, contact our DEBRA EB Community Support Team on 01344 771961 and select Option 1.


Everyone’s experience is different

You might have had a different experience to other people growing up which has had an impact on your lifestyle. For some people living with EB, your education may have been impacted by periods of illness or medical appointments; you might not have had any work experience previously and you might not feel very confident.

However, do not let this stop you from achieving your goals. You will have personal attributes that many employers are looking for and many employers “Recruit for attitude, train for skill’. Your personality and character traits may be just what a prospective employer is looking for and they might be willing to train you on the job.

To work or not to work?

If you are able to work, this can be an opportunity to meet new people and make friends, give you a sense of purpose or realise a fulfilling career. Living with EB will pose some challenges but many people living with EB have found ways to manage these challenges. You may wish to speak to your EB nurse if you want to work but are worried about managing your EB.

You may wish to consider voluntary or part-time work if you have never worked and are anxious about the impact of work on your health. These types of working will give you the opportunity to gain new skills and understand more about how to manage your EB alongside working.

When preparing for work, consider:

Travelling to work

  • How will you get to work? Are there long distances to walk if using public transport?
  • Can you avoid rush hour to minimise the journey time and possibility of being bumped into?
  • Is there disabled parking nearby your place of work?
  • If you arrive early, is there somewhere to rest before you start work?

Dressings, pain relief and rest

  • Will you have time to do your dressings before you have to start work?
  • When you get to work, are there adequate facilities if you need to lance your blisters?
  • Is there a comfortable break room that you can use if you get tired during the working day?

Your working environment

  • Is the environment air conditioned and cool?
  • Do you need any aids or adaptations to access any areas at work?
  • Is the work physical? What adjustments might you need to minimise any injury to your skin?

Time off work

  • How long is the working day? Can this be flexible or varied hours, or can you work from home?
  • Are there any other workers with long term conditions or disabilities? Is your employer understanding of any additional needs or considerations? A sympathetic employer can help reduce or minimise any stress. View our page on talking to your employer about EB for more information.
  • Understand your statutory rights when absent due to illness or medical appointments. Does the employer have additional workplace policies and protections for employees? The company’s HR department should be able to help you find these.


Looking for work

There are many agencies available to help support people looking for work, including people living with EB. The gov.uk website offers the following advice for people looking for work if you're disabled:

  • Access to Work – you may be eligible for money towards a support worker, cover for the cost of specialist equipment or travelling to/from work.
  • Intensive Personalised Employment Support – you may receive 1:1 support and individual training to help you get into work if you are living with a disability or health condition.
  • Jobcentre Plus – you may receive 1:1 support and be assigned a work coach/disability employment advisor. An advisor would be able to help you prepare a CV, identify work experience, training and paid work opportunities.
  • Work and Health Programme – you may be eligible for support to help you find and keep a job. Work Choice is a voluntary programme for disabled people (run through Jobcentre Plus) and can help you through the job process, including training, interview coaching and skills development.

Other agencies offering employment support

  • Barclays LifeSkills – helping people develop the skills, knowledge and confidence they need for work
  • Evenbreak – jobs board listing website for employers committed to hiring people and looking beyond a disability
  • Fair Start Scotland – flexible employment support service helping people get ready for work
  • National Careers Service (England) – providing information, advice and guidance to help people make decisions on learning, training and work
  • Remploy – helping people with disabilities find work and receive support at work
  • Skills Development Scotland - skills planning and career services support in Scotland
  • Volunteer Scotland - connecting people with volunteer opportunities

Training, accreditation and grants

  • Gov.uk – learn about and apply to become an apprentice
  • Gov.uk – support for further education courses and funding (you may be eligible for free training courses if you receive certain benefits)
  • NAVCA – helping individuals find volunteering opportunities
  • Shaw Trust (North West & Midlands) – helping individuals develop their learning and skills


Relevant skills and attributes

All jobs require a certain set of skills to take on a role – some jobs require experience using a specific technology/tool whilst others consider transferable skills (e.g. communication) to be more important.

Employers often outline what skills and attributes they are looking for from an employee, which is usually found in brief in the job advert and fully outlined in the job description. The employer may also specify a technical understanding or specific qualifications and experience.

The information below outlines some of the more common skills required by employers. For each of these skills we will provide a definition (what this means/what the employer is looking for) and examples of how you can demonstrate this skill (through education, training previous employment or work experience).

When reviewing each of these skills, think about how you can provide your own examples. If you do not have any or much employment experience, think about your daily life – managing EB appointments, ordering prescriptions, organising carers, etc. – and what skills you can highlight from those examples.

Contact the DEBRA EB Community Support Team for help to understand what transferable skills you might have that would be valuable to an employer.


Communication skills are the ability to:

  • read and understand key instructions;
  • explain what you mean in a written or spoken way;
  • listen and understand others’ viewpoints; and
  • understand what communication method needs to be used in a situation.

Example 1: Group project at college

At college I worked as part of a group on a project. We had to decide who would complete which tasks. Research for the project was undertaken by sending out questionnaires to local businesses and asking other students in the canteen to fill out a survey.

Example 2: Volunteering in a DEBRA shop

As a volunteer in my local Debra shop, I check email to see if there are urgent messages. I have to reply to any requests for delivery and telephone the van drivers in the morning to let them know where they will need to stop. I ask the shop manager what tasks need completing during my shift and let them know if there are any problems with customers.

Problem solving

Problem solving skills are the ability to:

  • understand key issues and identify solutions;
  • use knowledge and learn from experience to overcome challenges; and
  • provide support to colleagues and work with other to achieve objectives.

Example: Experience working in a supermarket

When I started my previous role working in a supermarket my EB did not really affect me. However, over time, it has become more difficult for me to work in the Fresh Produce section as my hands and feet were becoming more blistered. I worked with my line manager to be trained at the Customer Service Desk. I have now become a Customer Service Supervisor and often train new employees within the Fresh Produce section. By changing tasks, I have been able to reduce the blisters to my skin but still work the same hours as before.

Initiative / Self-motivation

Using your initiative (or self-motivating) is the ability to:

  • work without being told what to do;
  • be proactive in seeking work to do and helping colleagues;
  • come up with new ideas that are relevant and realistic to achieve;
  • keep managers informed of progress;
  • maintain a strong work ethic to help maximise results and achieve targets.

Example 1: Up-skilling (teaching yourself something new) in IT

I had a period of poor health and wasn’t able to study or work due to my EB. I researched some online IT training courses that I could complete to complement my college course. I also listened to different podcasts to learn more about topics that I am interested in and to distract from the pain I was in.

Example 2: Creating a social media group

I felt isolated due to my rare EB type. I decided to set up an online Facebook group to find other people who also have this and have now connected with dozens of people like me around the world.

Working under pressure and meeting deadlines

Working under pressure and meeting deadlines is the ability to achieve work targets and handle any associated stress that comes with the need to meet a deadline.

Example 1: Making sure bills are paid and on time

When I started living independently, I realised that there were a lot of bills that need to be paid and letters that need sorting and they all seemed to arrive at the same time. Typically, this would coincide with a time of poor health due to my EB or a lot of medical appointments. I have learned to make sure that I pay the important utility bills first and to set time aside to finish other tasks. If I am worried about not getting something done, such as paying the council tax, I call to explain which takes the pressure off.

Example 2: Creating reports at work

One of the tasks in my current role is to produce a weekly sales report that is due every Friday. I make sure that I set plenty of time aside to do this task and to delegate the stock order to my colleague, Linda. I have taught Linda how to generate the sales report too so that she can do it in my absence.


Organisational skills are the ability to:

  • plan and prioritise your work;
  • make sure that your work is in methodical, organised and tidy manner; and
  • understand time pressures and managing your own workload.

Example 1: Managing medical needs

I have a lot of medical appointments, therapy sessions and prescriptions. I keep a diary and telephone book to keep on top of all this. I write a to-do list every day so that I remember tasks, such as pre-booking the wheelchair taxi to my appointments and paying my carers on time.

Example 2: Supervising colleagues

I was responsible for supervising a small team of junior co-workers. I recorded all of the training they had undertaken, as well as the different machinery they were trained on so that I could allocate the work accordingly. I kept a file for each team member and reported back to HR every month so that HR could track absence and holidays for the team.

Team working

Team working skills are the ability to:

  • work with other people across a variety of roles and/or backgrounds;
  • communicate effectively within a team and with other people;
  • establish good working relationships, value the input of others and keep managers informed of progress;
  • understand team and individual objectives/shared goals; and
  • delegate to and provide support to others.

Example 1: Advocating for my child with EB

I didn’t feel that I was getting the correct support at school for my child who has EB. The school were getting frustrated at me and thought I was an overprotective parent. I emailed the Local Authority and asked them what help I was entitled to. I went back to the school and arranged a meeting with the Headteacher and for my DEBRA EB Community Support Manager to attend alongside me. At the meeting the school understood more about the impact of EB on my child and I was able to request the school to complete a healthcare plan. We agreed to review this in a month and both the school and I now feel things are working better.

Example 2: Booking appointments

I am responsible for booking appointments and have to liaise with patients to book appointments at appropriate days and times for their own schedules. I sometimes have to work with the other joint medical practice across town if we are not able to fit the patients in for an appointment. I often have urgent requests and will check with both of the Practice Managers to see where we can fit in the emergency appointments.

Learn and adapt

Learning and adapting is a willingness to learn new skills and adapt to new situations, as well as being enthusiastic about change.

Example 1: Managing expense reports

I found managing my teams’ expense reports to be a difficult task each month. I asked a colleague to help and to see if there was a better way of working. I am now able to use Excel to manage these reports and have found this much easier.

Example 2: Assistive technology

I can’t write or type easily because of my blistered hands and dressings. I looked online to find some software that can convert my speech into a word document. I have since looked into other assistive technology that helps me around the house, like turning the lights on and off when I speak a command.

Other transferable skills

There are plenty of other skills that may be requested by the employer, so it is important to understand how to relate these to your everyday life circumstances if you have not previously been employed. Some of the skills that may be requested include:

  • ICT skills – word processing, research, using Microsoft Office (Word, Excel, PowerPoint, Outlook)
  • Driving
  • Interpersonal skills
  • Sales
  • Customer service
  • Negotiation
  • Budgeting
  • Leadership
  • Multi-tasking
  • Management
  • Record keeping
  • Administration
  • Supervisory

If you do not have some of these skills and want to learn them, the websites listed in the Looking for work above might be useful for finding courses.

Personal attributes

Personal attributes are the same as a person’s character and personality traits. Along with skills, employers will often specify ideal personal attributes to make sure a potential employee will be a right fit with the company’s culture. Some commonly mentioned attributes include:

ambitious flexible persevering
assertive friendly persistent
calm happy positive attitude
caring hardworking quick thinking
cheerful helpful realistic
confident honest reflective
considerate independent reliable
courageous initiative respectful
courteous intelligent responsible
creative kind sense of humour
dependable leader sociable
determined motivated tactful
easy-going open-minded truthful
energetic organised team player
enthusiastic patient willing to learn
fair-minded pay attention to detail  

Thinking about all of these attributes, which do you think describes you? Write these down and try to think of relevant examples. It might be good to ask help from a close friend or colleague as well.


The job application process

1. Writing your CV

Writing a CV can be a difficult task. Job posts will often receive a large number of applicants, so it is important that your CV is relevant for the role to which you are applying. It can help to tweak your CV each time so that the prospective employer can easily see that you have the required training, skills and attributes they have highlighted in their job advert and/or application.

Check out these websites for tips on writing your CV:

  • SCOPE – writing a CV
  • Reed – How to: Write a CV

2. Interviewing

You have an interview; well done on getting this far. Don’t be nervous – be prepared!

Make sure you inform the prospective employer if you have any special access arrangements. If you are not comfortable or flustered when you arrive, you might not perform as well as you’d like. Practise the journey beforehand so that there are fewer surprises to hold you back on the day.

You should consider dressing for the job you are applying to, which may require you to dress in smart clothes (also known as business attire). Smart Works is a great resource offering women free dressing and coaching services with volunteer stylists.

If you haven’t had much interview practice before, ask a friend to mock interview you and ask you some of questions below:

Commonly asked questions

  • Tell me a bit about yourself.
  • What do you know about the company/organisation?
  • Why have you applied for this job/position?
  • What relevant experience do you have?
  • What would make you a good candidate for the role?
  • What does team working mean to you?
  • What are your strengths and weaknesses?
  • Tell me an achievement you are proud of.
  • Why is there a gap in your work history?
  • Can you give an example of a time when you had to cope with a difficult situation?
  • What are your goals?

Competency-based questions

You may also be asked one or more competency-based questions to make sure you would be able to perform the duties of the role. An example of this might be:

  • Give me a time when you have demonstrated good team working/communication/leadership skills. Think about what the important aspects of the job role are and what they might ask you to demonstrate.

STAR method for answering questions

The best responses for questions give a full picture so that the employer won’t have to make any guesses to fill in any missing pieces; however, it is also important to be concise with your reply. In order to do this, we recommend you use the STAR method in your answers:

  • Situation – set the scene
  • Task – what was the task/problem/situation?
  • Action – what did you actually do?
  • Result – what was the outcome? Would you do anything differently next time?

3. Feedback – did you get the job?

It is very rare for someone to receive every job for which they interview.

If you did not receive an offer this time, ask for some feedback. The applicant they chose may have been someone with a specific qualification or they may have felt you needed more experience in a particular field. Do not be put off and keep applying. Work can be financially rewarding, and it can also give you a sense of purpose.

If you received an offer, congratulations! Visit our page on talking to your employer about EB to decide if you wish to disclose this.


Get in touch

Let us know how you get on with your job search or if you have any tips to share with other Members. We'd love to hear from you, so don’t hesitate to get in touch via [email protected] or on 01344 771961 (Option 1).