No mind left behind

Young people’s priorities are at the forefront of the University’s new research into living with learning difficulties.

Diane was worried. Her son was five years old and had just been diagnosed with developmental co-ordination disorder (DCD). The condition can manifest itself in several ways, often making a child appear clumsy and less able than their peers to perform everyday tasks.

Diane’s son was at the severe end of the DCD spectrum, and at home he was displaying characteristics such as difficulty socialising, lack of self-esteem, and problems with reading and writing. His school, however, was not offering him support to help overcome these challenges. In fact, they described him as ‘bright’.

Reassurance

Diane turned to the Salvesen Mindroom Centre, a charity that seeks to ensure that every person with a learning difficulty receives the recognition and the support they need to achieve their potential.

For Diane, the reassurance was immediate. The Centre's Direct Help and Support team advised her on how to ensure that her son’s additional support needs were identified and met at his school. They recommended further psychological assessments, too, and supported her by email, telephone and in person. A member of the Direct Help and Support team accompanied Diane to meetings with the school, hospital, carers and her local MSP.

“It has been our lifeline,” says Diane. “Without the charity’s help, we would not have achieved getting my son the correct medical support and a co-ordinated support plan. We still have a long journey ahead of us with his education, but we have the comfort of knowing that the Centre will be with us every step of the way.”

Collaboration

The Salvesen Mindroom Centre was founded in 2000 by Sophie Dow whose daughter has learning difficulties. Since then, it has supported thousands of families living with learning difficulties. Thanks to a donation from Alastair and Elizabeth Salvesen in 2015, the charity established the SMC Research Centre into Learning Difficulties in a collaboration with the University of Edinburgh. The charity now combines practical and emotional support to families, children and young people up to age 25 years, with world-leading research into neurodevelopmental conditions that affect learning, such as autism and intellectual disabilities.

At the University, the SMC Research Centre undertakes this research, which includes the complex interactions between neurodevelopmental conditions and the young people’s environments, as well as investigating in-utero and infancy influences on learning in the developing brain.

Anne O’Hare is Professor with a Personal Chair in Child Life and Health, and Director of the SMC Research Centre at the University.

“Our research programme is ambitious and far-reaching,” she says. “We’re developing new validated outcomes of classroom participation in order to assess the efficacy of early interventions, and investigating the best ways of screening and diagnosing conditions such as intellectual disability that affect children’s learning in mainstream school settings.”

To achieve this, the SMC Research Centre and the Salvesen Mindroom Centre conducted a consultation in collaboration with the James Lind Alliance - a non-profit organisation that brings together patients, carers and clinicians to identify the priorities for the research of various medical conditions or treatments. The aim was to highlight the top ten priorities for children and young people living with a learning disability, their families and carers and the professionals that work alongside them.

And firmly at the heart of the consultation? People like Diane and her son.

“We included carers, clinicians and a wide range of professionals who support children and young people with learning difficulties. But most importantly, we involved the young people themselves,” says Anne. “It is vital that people with learning difficulties are given a voice - they need to be involved in the design of our research programmes from the outset.”

One in five

Salvesen Mindroom child with sign — One of the young people who took part in the consultation

More than 700 responses were received from across Scotland during the consultation, with the resulting top ten priorities including tackling bullying and creating the best learning environments.

Tests to spot early signs, and identify the best ways that professionals can support families and their children were also highlighted as key goals in the consultation.

Estimates suggest one in five children in Scotland – and at least five children in every school class - has some form of learning difficulty. These can range from a problem of understanding, to an emotional difficulty that affects a person's ability to learn, get along with others, and to follow convention.

“These difficulties rarely appear in isolation,” says Anne. “They frequently co-exist or overlap with other conditions - and they don't go away. Children with learning difficulties tend to grow up to be adults with learning difficulties. That’s why identifying areas that can make a difference at a young age is so vital and could make the transition into adulthood less challenging.

“We are delighted to now have clear priorities. It’s an exciting step towards ensuring that every person with a learning difficulty in Scotland receives the support they need to achieve their full potential in life.”

The top ten

The consultation carried out by the SMC Research Centre, the Salvesen Mindroom Centre, and the James Lind Alliance identified the following ten priorities for those living with a learning difficulty, their carers and clinicians:

Educational professionals: what knowledge, skills and training do educational professionals need to identify the early signs of learning difficulties and provide optimal support for children and young people affected to help them achieve the best possible outcomes?
Environment: what is the best educational and community environment for children and young people with learning difficulties?
Collaboration: how can multiple types of professionals work together with parents and carers to improve identification, diagnosis, interventions and treatments and achieve the best outcomes for children and young people with learning difficulties?
Early intervention: which early interventions are effective for children and young people with learning difficulties, at what ages and stages are they best introduced and what are the long-term outcomes?
Health, social work and third sector professionals: what knowledge, skills and training do health, social work and “third sector” (e.g. charities and support services) professionals need to understand the best support to give children and young people with learning difficulties and their families/carers?
Support: how can parents, carers, brothers and sisters and extended families of children and young people with learning difficulties, be best supported to achieve their best quality of life before, during and after the diagnosis or identification in home, school and community contexts?
Identification: how can we best identify early features, symptoms and signs of learning difficulties amongst children, young people and their families/carers?
Assessment: what is the best way to assess learning difficulties in children and young people?
Preventing stigma: Which strategies are effective in preventing stigma and bullying towards children and young people with learning difficulties?
Living: which strategies are effective in helping children and young people with learning difficulties live independent lives, including during times of transitions?