Omagh nurse Siobhan giving hope to the north's 'forgotten' children
Omagh-born Nurse of The Year Siobhan Rogan speaks to Seanín Graham about establishing a new 'one stop shop' for treating children with a range of intellectual disabilities
FORTY years ago many children with devastating mental health illnesses in Northern Ireland were locked away in psychiatric institutions – with their mothers told to "go away and have another baby".
Hospitals such as the scandal-hit Lissue outside Belfast – where generations of vulnerable children were abused – no longer exist and NHS services were overhauled to meet the complex needs of patients and their families.
While dramatic improvements have made in the care of young people with complex psychiatric conditions since the 1970s, major gaps remain that have led to the north's Children's Commissioner launching a review of the sector.
Among those hardest hit were children suffering from physical and mental learning disabilities who then go on to develop extreme conditions such as depression and psychosis.
For parents of these children, many of whom cannot speak, the heartbreaking and frustrating search for medical help routinely ended in failure as no tailored service existed.
For Omagh-born nurse Siobhan Rogan (37), the lack of specialist care had become striking through her work in the Western Health Trust and the Regulation and Quality Improvement Authority (RQIA).
"This the population of children who were traditionally locked away," Rogan explains.
"Institutions have closed now and these children are living in our community. But society hasn't really set up services around them.
"You don't hear so much about these cases because their parents are so isolated and are just trying to get through the day. If they have a child who isn't sleeping at night they just try to keep going and meet the needs of all their children.
"I've had a parent of an adult with learning disabilities tell me she was told to send her child into hospital and to go away and have another baby. That's basically what happened."
After taking up a post with the Southern Health Trust two years ago, Siobhan created a new service in which health professionals specifically trained in learning disability – or 'intellectual disability' as it is now known – were housed under the one roof.
Siobhan, who last month received the prestigious Nurse of the Year Award by the Royal College of Nursing (RCN), and her team have now seen and treated more than 200 children.
One parent told the RCN she had "not only saved his child's life but his life".
Passionate about her job, the quietly spoken nurse revealed her "naivety" upon entering the profession.
"When I went into nursing, I thought that if you had a child with a diagnosed disability that a flock of angels appeared around you and offered you lots of services – but the reality is very different for our children, particularly when it comes to mental health needs and behavioural difficulties.
"Our kids are four to five times more likely than the typically developing population to have a mental illness and experience a significant psychiatric disorder, but yet they can't access services. So there's a greater need."
Children with Down's Syndrome, autism and ADHD are among those who have been referred, with the youngest aged five.
Prior to the unique service being set up, young patients would have been assessed by different health professionals including psychiatrists and other community-based input.
"Previously, it was a very inefficient system where children were bounced from one team to another. With this new service, you have everyone in the one team.
"When we talk about a child, everyone is in the one room in the same way we would for our mainstream kids.
"But our kids are actually more complex. They also have a lot of physical health problems such as epilepsy that have been misdiagnosed as mental health problems.
"Many don't use a lot of the mainstream services such as the GP or dentist because they are afraid."
The majority of children seen by Southern Trust specialists remain in their care, as major changes to their routine, such as moving schools, can have a massive impact on them.
The onset of adolescence – the service receives referrals for children up the age of 18 – can also trigger illnesses.
"Adolescence is always a difficult time and you're most likely to get the onset of psychiatric illness," Rogan explains.
"Most likely, if they are experiencing mental illness it will be in the form of hearing voices, but because the child is 'non-verbal' they cannot express this and it's put down to challenging behaviour.
"A young person with depression won't be able to tell you that they’re depressed."
The success of the treatment has led to a summer scheme being set up for families who have never been on holidays before, thanks to a link-up with Corrymeela.
"A lot of the families who come to us have spent years going to different health professionals and being told there was nothing they could do.
"Very often parents tell us we are the first people who have understood or the the first people who have given them hope.
"We're trying to develop support networks with our families because our kids don't go to each other's birthday parties, they don't go to each other's houses.
"A lot of our families have never been away together. We asked one what they would like to do – all they wanted was to go a beach.
"It's just very simple things that people want but that are so important and make a big difference."
Meet a family who credit Siobhan Rogan with giving them their son back
WHEN he was just shy of his second birthday, little Leo Smith (11) from Newry stopped speaking.
A happy, babbling toddler, his parents Joanne and Gavin immediately sought help when they noticed their first-born child was completely silent. In a service area hit by spiralling waiting lists, the couple were lucky in that they were able to access speech therapy and educational psychology care easily.
A diagnosis of autism was made when Leo turned three.
Despite being non-verbal he settled well into early years specialist education and was a content child.
However, the family’s life changed radically last year when the Co Down boy developed a severe tic which resulted in his body going into uncontrollable spasms that eventually led to him hitting himself repeatedly.
Crying himself to sleep each night, Joanne and Gavin would spend hours lying beside their son who had become a “different child” from the technically brilliant kid who loved trampolining and listening to AC/DC.
On family holidays with his parents and little brother Jake, Leo was unable to eat with other people and stayed in a hotel room with his own bowl, spoon and cereal.
A GP referred the family to a new service set up by specialist nurse Siobhan Rogan who wanted to help children with learning disabilities who develop mental health problems.
“We went to see Siobhan and her team once a week over a year and very gradually we started to see a difference,” explained Joanne.
“They developed a schedule or timetable for Leo to follow at home with the use of picture cards and mobile phone apps.
So when Leo got up each day it allowed him to see what was happening and what activities he would be doing.
He could also show us what he wanted. “It may sound simple but he had always refused to do this at home even though he had followed a timetable in school.
He was also given a low dosage of medication which has been reduced significantly.”
A year on, the Co Down couple credit the intensive work by Siobhan and her team to a dramatic change in their son’s behaviour – while the tics have almost gone and he goes to sleep peacefully.
A landmark event also took place two months ago when Leo sat down to a ‘full English’ breakfast in a hotel with his family and other guests.
“The stress levels have gone along with the worry and concern he is going to harm himself. When Leo’s in good form, we’re in good form,” said Gavin. “It’s also great he’s getting on so well with Jake, they love each other. “Thanks to Siobhan, we’ve got Leo back again.”