Don't get stuck in a rut! Have the top stories straight to your inbox for free - once a day, every day Yes please! Thank you for subscribing We have more newsletters Show me See our privacy notice Invalid Email

Justine Barksby and Sam Humphrey are learning disability nursing lecturers at Leicester's De Montfort University. Here, they tell Leicestershire Live about the remarkable stories behind their career choice.

'I got really angry'

When Justine Barksby was a child, all she wanted to do was dance.

As she got older, she decided to follow her dream, and became a teacher at a local dance school.

One day, a would-be pupil walked in who would change her life.

"A lady came to the dance school and asked if her six-year-old daughter could have dance lessons," said Justine, now 47.

"And I said, 'Yes, this is how much they are, this is what we do'.

"And the lady looked at me quite questioningly and said, 'This is my daughter that I'm inquiring about - are you sure?'.

"Her daughter clearly had learning disabilities. I didn't really know what they were called back then, but you could see by looking at her that she had a disability."

Justine told the woman that yes, of course her daughter could have dance lessons.

She asked how old the little girl was and suggested she attended a class that was for children a little bit younger than her age group.

"And her mum again said, 'Are you sure?'," said Justine.

"I said, 'Yes' - and her mum said to me, 'Only, you're the fifth dance school I've been to, and we've been turned away from everywhere else'.

"I got really angry, and thought, 'Right, tell me which dance schools, I'm going to report them, this is not on'."

Justine said that when she asked the girl's mum, however, the parent "sort of laughed at how involved I was and how I got angry on her behalf".

Justine found that she loved working with the little girl - who attended the lessons, took exams and did well - more than she loved teaching dancing.

In fact, she loved it more than anything else.

So she started to think that perhaps she was in the wrong job and needed to think about a new career.

Justine considered teaching in special education, but then someone told her about 'learning disability nursing'. Such nurses provide specialist healthcare to people who have learning disabilities.

She decided to do that instead, and hasn't looked back.

(Image: Leicester Mercury / Chris Gordon)

"So that little girl coming in - and in hindsight I'm really glad that the dance schools turned her down because she might never have come to us - she completely changed my life.

"I have no idea what I would have been doing if it wasn't for her."

Justine still occasionally bumps into the little girl, who has no verbal communication.

The first time it happened was in her local supermarket. Justine, who had not seen her former pupil for about 10 years, heard a noise and thought, That sounds like her'.

She walked around the corner and down the next aisle, and there was the little girl's mum. She called over her daughter, now aged about 16.

Justine said: "Her mum said to her, do you know who this is?

"And in the middle of the supermarket she started to dance!

"I spoke to her mum for a little bit and then we said goodbye and I walked off - and I'm walking round the supermarket blubbering because she'd totally changed my life and apparently I'd had a bit of an impact on her as well.

"It always makes me feel really emotional even just thinking about her - she was fab.

"I really loved working with her, and I think that is the thing about our speciality. It is so rewarding and unpredictable. I like that. Every day is unpredictable and different.

"There's no boring days when you work with people with learning disabilities, and I love how a lot of people with learning disabilities are so honest."

'You look terrible'

Recalling an episode when she experienced that honesty, Justine said that she used to run an NHS service for people with learning disabilities, and was on leave decorating after a house move when staff rang to let her know the service's building had been broken into.

"They'd made such a mess of our property, I said I'd go down," said Justine. "I put my paintbrush down and left the house."

Usually smart and polished at work, she arrived on this occasion wearing her decorating clothes and no makeup.

"I walked in and one of the people with learning disabilities came up to me and asked me if I was poorly," said Justine.

She told him she was just on leave as she had moved house.

"And he said, 'You look poorly, you look terrible!'

"And I can remember thinking, 'I bet all the staff are thinking that!'

"I love that refreshing honesty."

'That sounds horrible'

Some people who have a learning disability display challenging behaviour, which can include self-harming and lashing out against other people.

"I remember when I was a student being told I had to go on my challenging behaviour placement, and I remember saying to my tutor, 'I'm not going that sounds horrible', and my tutor said, 'Yes you are, off you go!'

"I turned up and within about two hours was saying to the staff, 'I qualify in 18 months - do you think there'll be a job here?'

Why some Argos and Sainsbury's shoppers wear sunflower lanyards

"I changed my mind that quickly, because when people with learning disabilities display those behaviours that we call 'challenging', it's not because they are mean, it's about their struggles to understand what's happening, their frustration, particularly if someone can't communicate that they've got a headache or they're in pain or they're hungry or thirsty.

"If we're not paying enough attention to that, they have to show us in some way, and often that's what those challenging behaviours are about."

There are many specialist roles within learning disability (LD) nursing, such as epilepsy nurse, clinical nurse specialist for challenging behaviour and specialist autism nurse.

"We are supporting and empowering a person with LD to live as ordinary a life as possible," said Justine.

"Even on the tough days, I've never thought, 'Why am I doing this?'. On those bad days, someone with a learning disability will come up and put an arm round you or hold your hand, there'll be someone that will do something to make you realise why you're doing it."

'I studied media - then my gran got ill'

Sam Humphrey did a degree in media at Nottingham University in 2008, not really knowing what he wanted to do.

"I just did that because it was interesting," he told LeicestershireLive.

"I was working at Argos part-time and was going to stay there full-time because it was all right."

While Sam, now aged 32, was working at the chain store, his granny became poorly and was eventually diagnosed with an inoperable brain tumour.

She went into hospital for about six months and needed round-the-clock nursing care.

Sam saw what the nurses did for his gran, and started to think that was a career he might be interested in. He applied on a whim to Nottingham University to study adult nursing.

He went on his first placement about eight weeks into the course.

"I remember walking onto this diabetic ward and there were all these patients in bays, " he said.

"I was surprised, thinking, 'What am I supposed to do with all these sick people?' I had no experience apart from seeing the stuff with my gran.

"I hated it because I was so naive. I felt out of my depth.

"I was working with students where nursing was always their dream and everyone was really passionate about it, and I was a bit like, 'Well, it's all right - I don't know what else to do!'.

"I remember walking home on my first day and I cried because someone told me off for taking too long to wash my hands.

"And I thought, 'I can't even wash my hands properly I must be awful'.

"So I hated it. The placement was about eight weeks long and I was thinking, 'If i can just get through these eight weeks I'll go somewhere else, maybe it will be different'."

(Image: Leicester Mercury / Chris Gordon)

As part of his training he did a four-week taster placement in learning disability. Until then, he didn't know the service existed.

"It was amazing," he said. "I got so much out of that four weeks. I was going home and telling my mum how excited I was.

"It was tangible, and it was real. You got to know people, and you had the time to form relationships.

"While I was there, I went to a seminar about the right to vote for people with learning disabilities - things like that had never occurred to me at all before."

After the four weeks, he chose to train in learning disability.

'They're waiting for the rest of us to catch up'

Prior to teaching, Sam's background is mainly in residential nursing services for people with profound and multiple learning disabilities - people who have quite severe learning needs but have some physical health conditions as well.

His first job after qualifying was in a residential nursing service for 14 people.

"It was amazing. I got so much from these people," he said. "Nobody could talk verbally or express themselves, but you saw so much how people relied on other forms of communication.

"I've never met anyone with a learning disability that can't communicate in some way. They're usually just waiting for the rest of us to catch up and find out what that way is."

'It all comes down to awareness'

Prior to teaching at De Montfort, Sam was a primary care liaison nurse, supporting people such as doctors who work with people who have learning disabilities.

He initially thought it would be easy.

"I thought, 'They are the general practitioner, I'm going to walk in, tell them what's new, then I'll walk out again'.

"But they lacked that confidence to speak to people with a learning disability for fear of upsetting them or making things worse.

"It all comes down to awareness. You don't know what you don't know, and if people have never had the opportunity to learn about it, you don't know it do you?"

Learning disabilities nurses can work with people from tiny babies to end-of-life.

Usually big hospitals employ small teams of learning disability nurses who cover most of the hospital, not just one ward, and help staff to support a patient, as well as support the patient directly.

There are also specialist services for people with learning disabilities, where nurses and other care staff work directly with a person all the time.

Learning disability nurses can also work in the community and help people to live independently, or support them in the family home.

If you're interested in looking at training to be a learning disability nurse contact justine.barksby@dmu.ac.uk