Turning grief into growth: how a bereft mother became a learning disability nurse

Ahead of the Learning Disability Today and Kingston University conference on 12th September, our conference speaker Lauretta Ofulue, a Health Visitor at Central and North West London NHS Foundation Trust, shares what drove her to train as a learning disability nurse and what she would like to raise awareness about at the event. 

Lauretta Ofulue left her career in financial services to train as a learning disability nurse following the death of her son  Otito, who was born with an inherited metabolic condition. Here, Lauretta tells us about her career journey and how her son’s care transformed her view of the nursing profession.

Why did you decide to train as a learning disability nurse?

I became a learning disability nurse following the care my late son Otito received. Otito died in 2017 following complications from Propionic Acidaemia – a rare metabolic condition which affects how the body breaks down and utilises proteins. Otito also had autism, a global developmental delay and was non-verbal. My husband Jerry and I often struggled to get access to support in the community for our son. We had to constantly “fight” to get his voice heard.

Although staff were amazing, they often lacked the skills to interpret his needs or understand his presentation or communication. This meant that Otito sometimes suffered unintentionally. Following our positive experience with a learning disability nurse, Otito’s care became tailored to his needs, and he was able to live out what became his last days in less pain because of the tools used by the learning disability nurse to support his pain assessment and justify the use of stronger pain relief for our son.

After he passed away in 2017, Jerry and I decided to complete our training in learning disability nursing to add to the number of nurses in our field.

I know that you and your husband initially viewed nurses as ‘the enemy’, what has now changed?

It was always a fight to get Otito’s needs met. We were unaware of the genuine constraints being faced by professionals, but all we wanted was to keep our son safe, healthy and happy. Sometimes staff did not communicate with us very well and this added to our frustration. This led us to sometimes perceive them as being ‘against us’.

Just before our son died, he had an extended admission at Great Ormand Street Hospital (GOSH) and this gave us the privilege of working closely with staff in a collaborative way. We began to see the challenges they faced first hand. There was less conflict and better communication. This is why it was easy for us to plan to come back and join forces with colleagues in a way that will be tangible, helpful for families and soothing for us as a family following our loss.

Why would you encourage others to consider a role which involves caring for people with learning disabilities?

Learning disability nurses possess unique skills that enable them to bridge the gap between their clients and other colleagues in a swift and meaningful way. People with a learning disability have a right to enjoy life like everyone else. They need their nurses to continue to be present in various aspects of daily life to advocate for them and support them, but our numbers are few.

I would encourage anyone contemplating a career in nursing to choose learning disability nursing. Today, learning disability nurses are working in different aspects of healthcare. Look at me, I work as a health visitor and use those unique skills to support families from the delicate time of pregnancy to early years and parenting.

My husband works in a forensic unit supporting the rehabilitation of people with mental health problems and learning disabilities to enable them to rejoin society as valuable members of the community. Some learning disability nurses work in hospitals, in community teams or GP surgeries, while others teach in practice or at university. Becoming a learning disability nurse can open so many doors, and I believe our future is very exciting.

What would you like to achieve by speaking at the conference?

I would like to raise awareness of the fact that learning disability nurses can work in a variety of settings. I want learning disability nurses to feel confident about their future and know that they will be supported in the path they choose.

It is important that we do not feel intimidated by colleagues in other fields of nursing. We are all a team and should not compete against one another.

To reserve your spot at our health and wellbeing conference, click here.