Understanding the fundamental importance of communication, Tracey Campbell launched her business, Tracey Campbell ACT, to help people with disabilities fulfil their potential. She talks to RARE Revolution about how she has fully embraced her new role and about her hopes for the future

RARE entrepreneur series: meeting the beating hearts behind the RARE brands

Tracey Campbell ACT helps people with disabilities, including complex communication needs, achieve their full potential. I meet with disabled people, family members or professionals either 1:1 or in group sessions and provide workshops. I aim to provide communication partners with the knowledge and skills to implement systems and strategies in their daily lives. We work together to either implement communication systems, teach literacy skills, offer supports for, and understanding of, distressed behaviour, and/or develop advocacy skills.

1.

What was the driving force in starting your own business in the rare disease space? Was there an unmet need you were responding to?

My daughter has Angelman syndrome. Amongst other things this means she cannot meet her communication needs using spoken words. She now uses a PODD book and app on an iPad. With the book she points to the symbols and a communication partner reads the words. The app speaks the words for her. She has learned this from us using the same systems to communicate with her. We learned that we should do this at a conference eight years ago. I recognised it wasn’t something parents, or even professionals, were aware of even though it is very logical. Since then, I have helped my daughter, and others with complex communication needs (CCN), and tried to raise awareness so that everyone gets the opportunity to learn to communicate. I have made some impact but not enough. After completing my PGCE in Complex Communication Needs, I decided that I should try to create the change that is needed. After all, communication is a human right.

2.

How does your business benefit the rare disease community?

As well as helping disabled people communicate better on an individual basis, I will be raising the profile of disabled people. I hope that over time everyone gets access to proper communication and an education that will help them reach their full potential or as far as they want to go at least.

3.

What advice, if any, did you get when setting up your business? Has there been anyone in particular who has been pivotal in supporting your business?

Dip your toe in the water before giving up your day job. Your brand is more than a logo, it is everything about you and it’s important. Do not to undersell yourself—I am still working on that one! I have had advice from Business Gateway, and two well placed friends, Jenny Trott, director of Mecoco and Prof Eleanor Shaw OBE, associate principle at University of Strathclyde.

4.

How do you manage the demands of running a business with your own health needs, those of someone you care for, or those of your employees?

I have just given up working in the NHS as the juggle was too much. The problem is, that was my escape into a completely different life. To combat this, I aim to exercise and connect with people every day. That helps me to sustain the good mental health that is required to balance work and home life as well as continue to advocate for my daughter to live her best life. My diary is vital, my days can be filled with appointments for my daughter as well as clients.  

5.

What advice do you have for someone starting their own business?

I made my own website and logo just using website software. I don’t consider myself to be overly creative, but I found it easy. I did canvas opinion from friends and on Facebook—it is worthwhile as this can help you if there is something you haven’t thought of. But do remember you will get many different opinions so you will need to make the final decisions. Finally, it is more time-consuming than you think, but worth it!

6.

What are the most rewarding aspects of establishing and running your own business?

When one of my clients tells me a story of success or when I tell them something that I see immediately is going to be a game changer for them. For example, one of my clients said she just can’t get her daughter to be interested in books. I said write her a book about crisps (this is by far her most consistent word on her new communication device). Her face lit up and I knew that she would go and write the best book there has ever been written about crisps!

I also love the flexibility and the new community I have already created. I thought I would be lonely without colleagues but so many people have reached out already. It’s exciting. 

7.

What would you consider to be the greatest achievements of your business thus far?

Whilst, of course, I love it when clients start communicating more, it is the moments when I hear about one of my clients being respected and valued that really make my heart sing. It is sadly rare for people with CCN to feel like that. I understand how important those moments are. These are things I wish someone could have told me when my daughter was younger and that is why I aim to be exactly that person for all my clients.

8.

What advice would you give someone considering working in the rare disease space?

Always have at the front of your mind that regardless of how the person in front of you is presenting, they are a person first and foremost. Always treat people in a way you would want you or your child to be treated. Furthermore, whatever you are advising, think about the purpose of what you are doing and the sheer effort that will be required of the person. If it isn’t authentic, the chances are it won’t work, they won’t be motivated to expend the effort, so it isn’t worth it to them.

9.

What are your hopes for the future of your business?

I dream of one day setting up a learning centre. My vision is for people with lived experience of disability to be the teachers about disability and that both disabled and non-disabled people will come to learn from their wisdom. I have no idea yet how to make this happen, so I will keep going as I am for a year soaking up experience!

Before I came up with this grand plan and when the business was a just an idea, I hoped that one day everyone would understand that there are reasons behind distressed behaviour and that everyone would get access to communication and education. Then I would give up my business and go back to playing with bacteria. But now I have started it, I love it too much. So, whilst this is still my main hope, I think I will now have to find a job in this new utopian land. 

10.

 If you hadn’t founded Tracey Campbell ACT, what was Plan B?  What did your 10-year-old self want to be?

I have just given up a 23-year career as a biomedical scientist in the NHS to set up Tracey Campbell ACT. So I guess ACT is Plan B! When I was 10, I wanted to be a teacher. My new venture is closer aligned to those dreams.