In this Q&A we are honoured to have Helen Todd, Founder of Impact People Consulting join us to share her remarkable story. 

Helen, thank you so much for sharing your story with us today. Please can you share more about your personal and professional journey?

I became an unpaid carer in January 2012 when my son, Josh, was diagnosed with Type1 Diabetes – he was 4. I was working full time, and also studying part-time for my Postgraduate Diploma. I shared the overnight care, the medical decisions, the hospital appointments etc with my husband David. Josh was due to start school that year. He was refused entry to primary school because his Statement of Needs was not in place and a trained classroom assistant had not been recruited. I was given the option of leaving my job to sit outside the school to complete his care, but this was not financially viable. We found him a new school, and this is when my role as a Campaigner with DiabetesUK NI started and I began really advocating for Josh. 

Josh started to develop complications of his multiple daily injections regime in 2015 and I advocated for him (and 10 other children on the waiting list) to get access to insulin pump therapy. It is no exaggeration to say this changed his life. I also sat on the Diabetes Network Technology Subgroup as a Service Champion of DiabetesUK from 2016. One huge achievement of this team was getting flash glucose monitoring free on prescription for all those living with Type 1 Diabetes in NI in 2017.   

At this point, I’m working in a role I really enjoy, Josh is learning to use the tech to manage his Type 1, and then in July 2017 David is diagnosed with anaplastic oligodendroglioma – an incurable and life limiting form of brain cancer, alongside brain tumour related epilepsy. The tumour, the brain surgery, the radiotherapy and chemotherapy all contributed to him also developing severe acquired brain injury and frontal lobe syndrome. I’m now a carer for two people and a solo parent. 

David’s treatment takes a year to complete. I have to change job to be closer to home, and I have to navigate the adult Social Care system for the first time. 

David requires constant supervision, so it’s necessary to employ two Personal Assistants for him. Throw in the Covid pandemic too, and I am balancing home-schooling, caring for David, and working full time.

How have these experiences shaped you personally and professionally?

Let’s start with how these experiences have shaped me personally. David and I shared the caring responsibilities for Josh, and we managed – we had each other. 

The absolutely devastating thing about David being diagnosed with brain cancer and severe acquired brain injury was that although he was still alive, the man I married died. My marriage no longer existed. David became aggressive, nasty, and his behaviour was incredibly erratic. David could no longer dress himself, shower by himself, clean his teeth, feed himself - I had to do these things for him, and that’s just the start of the list. I look back at photos of myself during this time, and I know it’s me, but I know how much effort it took to put a smile on my face. I was exhausted. I survived on very little sleep, and I lived at a constant heightened level of anxiety. Being an unpaid carer is very lonely and isolating. My life was lived on David’s terms. I had no social life, I couldn’t go out after work, and any downtime I had was spent on David or household admin.

Since David moved into the care home last May, it has been really important to me to live life on my terms. I love going to the gym or out for a walk whenever I want, I see my friends, I go out in the evening, I have lie-ins – these are all things I didn’t get to do. I’m spending time with Josh too, not just sorting stuff out for his Dad. 

I also volunteer with CarersNI, raising awareness of the invisible workforce of unpaid carers.

What are some specific skills you've developed through your caregiving roles that have been valuable in the workplace?

Being an unpaid carer has required negotiations with healthcare providers, and support services. 

The critical nature of the decisions I faced daily, and still do overnight with Josh, has enabled me to make quick, well-informed decisions under pressure. 

Managing the unpredictable nature of my David’s and Josh’s health conditions has required constant problem-solving and adaptability. I’ve had to think on my feet and create action plans and solutions to unforeseen challenges. 

David’s severe acquired brain injury and his communication deficits meant I had to be very mindful of my words, my tone, and my reactions.  

As an HR professional, I have always needed to have negotiation, decision-making, and problem-solving skills, alongside patience and effective communication abilities. However, my caregiving roles significantly reinforced and refined these, enabling me to apply them in impactful ways throughout my career.

How do you balance the demands of being a carer with maintaining your career?

This is a huge question. Everyone’s experience of being an unpaid carer is different, and an employer needs to understand your situation. I have always been incredibly ambitious, and that has never gone away, but circumstances have meant I don’t have the career I wanted. 

My career was put on hold when Josh was diagnosed with Type 1 Diabetes. I had to reduce my hours by 1 hour a day through a flexible working arrangement and was effectively considered a part time employee working 35 hours a week. David’s cancer and severe acquired brain injury meant giving up a job I loved when he was first diagnosed because I had to support him through treatment, and beyond. At times, I was perceived as not being able to balance my caring duties with more responsibility at work.   

What advice would you give to fellow carers who are also trying to manage their professional responsibilities?

Talk to your manager and colleagues about your caring role and responsibilities – the more you talk about what you are doing alongside your job the more they will understand your situation. 

In your opinion, what can organisations do to better support employees who are also carers?

When I was David’s unpaid carer, I was on constant high alert and that filters into everything. I would dread appointment letters because I would have to ask for time off work. I would dread his day centre ringing because it probably meant something had happened and I needed to leave work or again take time off. I would dread David getting sick, because he would need extra care from me, and I would then have to take time off work. Josh and I then also ran the risk of getting sick – so more time off work.

None of this was within my control, but it would mean using my annual leave at short notice or making the time up. I didn’t ever really use my annual leave for anything for me.

Flexibility: Organisations should offer flexible work arrangements, understanding that carers often have to manage appointments and emergencies at short notice. This includes allowing flexible hours, remote work options, and the ability to take time off when needed without the stress of making up time or using personal leave.

Understanding and Support: It’s crucial for organisations to have a culture of understanding and support. Managers should be trained to recognise the unique challenges carers face and to offer empathy and practical solutions. This could mean rescheduling meetings so that carers don’t miss out on important information or interactions, and extending deadlines on projects to relieve additional pressure.

Regular Check-ins: Continuous support is vital as caregiving situations can change rapidly. Regular check-ins with carers can help ensure that their current needs are being met and that any changes in their caregiving responsibilities are taken into account.

As someone who lives with multiple neurological conditions, how do you manage these while maintaining productivity and performance in your job?

I absolutely love my job – having a portfolio career means that I am accountable for my own performance and productivity, and I really enjoy my work!

We hope Helen's story inspires fellow carers and helps organisations better understand how to support their employee carers in the workplace. You can find out more about the work Helen is already doing to help workplaces here.