Learning disability nursing award for nurse who is bringing care closer to home
A nurse who developed and delivered a service supporting children with a learning disability or autism and their families closer to home has won a prestigious award.
Tracey Hartley-Smith, who works for Lancashire Care NHS Foundation Trust, is the winner of the NHS England-sponsored learning disability nursing category of the RCNi Nurse Awards – the profession’s top accolade.
Ms Hartley-Smith was leading the learning disability/complex needs service in central Lancashire when she realised that in the north of the county there was no access to specialist nurses for children and young people with learning disabilities or who were on the autism spectrum, or those presenting with challenging behaviours.
Through innovation, dedication and work with commissioners, she developed and delivered a service that has dramatically improved the quality of life of these children and young people.
‘By providing evidence-based support earlier to children and young people and their families, we can prevent harm and build resilience in children and young people through to adulthood,’ says Ms Hartley-Smith.
‘There is now timely and skilled support for families in an appropriate environment, whether home, school or clinic.
'We had an immediate surge of referrals for children with complex and challenging behaviours'
‘We have established relationships with local schools, children's social care, and other children's health services in an area of Lancashire where our team was largely unknown.’
Watch: RCNi Nurse Awards 2018 Learning Disability Nursing winner Tracey Hartley-Smith
Helping families in crisis
There were significant challenges to overcome, including recruiting qualified and experienced learning disability nurses and addressing the challenge of finding an established base in an area of Lancashire with no history of providing learning disability services for children.
‘It was a challenge to find capacity – on a very limited budget – to meet the needs of the families who had previously had no learning disability nursing input,’ says Ms Hartley-Smith. ‘Many of these families were already in crisis and we had an immediate surge of referrals for children with complex and challenging behaviours.’
She cites one case as an illustration of the difference the initiative has made.
A teenage girl was heavily reliant on medication and had no robust multidisciplinary team supporting her. Her challenging behaviours had escalated until she was facing the prospect of residential or hospital care.
With the new service, she received a holistic initial assessment including observations at home and school as well as sleep assessment. Her sensory preferences were determined and positive behavioural support approaches introduced. Her medication was assessed and reduced. 'This went well because of the robust nursing and behavioural support that was provided,’ says Ms Hartley-Smith. ‘She is the happiest she has been in years and is now more engaged and enjoying school.’
‘Our close liaison with schools ensures a consistent approach across settings, leading to improved communication and a child-centred approach'
Evaluation shows this success is not a one-off. Assessments are leading to parents being able to adapt their communication and management strategies to support children with their behaviour and anxiety – 96% say they feel more confident in managing behaviour. The same percentage of children, young people and their parents reported improved relationships.
All children, young people, parents and carers report that the support they have been given was good or excellent and 100% reported that they were able to influence the support they received.
‘We have increased the level of support to parents with children with extremely challenging behaviour, and we are able to facilitate psychiatric involvement where necessary,’ says Ms Hartley-Smith. ‘Our close liaison with schools ensures a consistent approach across settings, leading to improved communication and a child-centred approach. More able children are benefiting from individual therapeutic support which has reduced their anxiety and behavioural difficulties.’
Out of area placements and hospital admissions have been avoided. ‘Not one child has had an inpatient stay for needs relating to their learning disability or mental health,’ she says.
Janette Buckland, learning disability commissioner for Morecambe Bay Clinical Commissioning Group (CCG), says Ms Hartley-Smith ‘absolutely deserved’ to win the award.
‘Tracey is incredibly passionate about and committed to delivering excellent care for children and young people with learning disabilities and autism spectrum disorder. We have been so impressed by her solution-focused, can-do approach which has enabled us to commission an innovative, cost-effective and child-centred community service for children and young people.
‘Her team works closely with other agencies ensuring there is consistency of approach and understanding of a child or young person’s needs in various settings, positively managing risk and presenting behaviours and offering practical solutions which have been particularly beneficial in enabling young people to access or continue with their education or social activities. Her work and liaison with colleagues in adult services has led to a more streamlined and effective transition process that is focused on the young person.’
‘She frequently supports CCG commissioners to manage very challenging situations, often beyond her normal working hours. It is a pleasure to work with such a positive, proactive professional.’
The RCNi Nurse Awards judges were also impressed by what Ms Hartley-Smith had achieved. NHS England deputy chief nurse Marie Boles says: ‘Much of the national Transforming Care programme has focused on adult services so it was particularly heartening to see work that reflected the needs of children, young people and their families.
‘Tracey has developed a service that directly responds to the crisis, anxiety and frustrations that we consistently hear from families. She has recognised the need for partnership working not only with clinicians and agencies but, more importantly, with young people and their families.’
Salford Royal NHS Foundation Trust clinical nurse specialist Dave Williams, a member of the RCN Learning Disability Forum, was also on the panel.
He says: ‘Tracey demonstrated dedication and commitment to her role as a learning disability nurse to make a major change in her working environment.
‘She delivered a service that provides early intervention which benefits children and also their families. These people were not having their complex situations supported which could have led to children being supported in a restrictive way. Tracey and her team are working to ensure better outcomes with the least restrictive services for those children and families.’
Ms Hartley-Smith is now working with commissioners to develop a neurodevelopmental service, including an autism spectrum disorder diagnostic pathway. She says: ‘These services have become established largely as a result of my determination, dedication and insight into 'what good care looks like' for children with a learning disability and/or autism and their families.’
Bringing care closer to home
Helen McGuinn’s daughter has severe learning disabilities, attention deficit disorder and complex needs. She may also have an autism spectrum disorder.
‘We have had no diagnosis apart from attention deficit hyperactivity disorder,’ says Ms McGuinn. ‘She is nearly 14 and is becoming a young adult which brings with it a new set of issues.
‘I was referred for support by consultants and doctors but there was nothing in my area. I had already been waiting for months when I was offered a place on a ten-week Riding the Rapids course for parents who would like to try different approaches to manage their child’s behaviours – but it was about 40 minutes drive away. When I sat in the waiting room, everyone seemed to know each other.
‘My time is very limited and I still have all the normal things to do when I am not with my daughter – as well as earning money. It was very stressful.
‘When I was able to go to the course locally it made a massive difference. The nurses helped in practical ways.
‘It has helped me learn to cope and deal with stress and challenging behaviour’
‘I don’t need sympathy. I come across complex barriers all the time and need things that will help. The course was very down to earth, practical and, most importantly, it was with someone who understands special needs very well and knows all the issues properly, not on a superficial level.
‘It has helped me learn to cope and deal with stress and challenging behaviour. The sensory assessment for my daughter has also really helped.
‘I have accessed respite and was directed to talking therapies. I asked for one-to-one sessions and I was given them. It helped me to have someone to talk to who was not emotionally involved in my situation. I was having very negative thoughts but now I feel I can talk about it and ask for help. It is nice and local and it's an easy thing to do.
‘I am the only one who has all the information about my daughter's experiences. I’m not a doctor or consultant, but have had to become an expert in psychology and speech therapy. It is so very stressful to be the only person with this responsibility. So having someone to talk to and make me understand that I am doing a good job is very valuable. And it has given me confidence.’
Meet the other finalists in the 2018 RCNi Learning Disability Nursing Award sponsored by NHS England
- Andrea Bowring, learning disability team, Health and Social Services at Jersey General Hospital
Andrea Bowring has transformed care for every resident on a five-bed unit for people who have learning disabilities and autism. She implemented positive behaviour support and improved residents’ quality of life by offering more choice and independence.
- Karen Whittle and the learning disability team, Royal Liverpool and Broadgreen University Hospitals NHS Trust
Karen Whittle, Shaun Lever, Serena Jones and Ged Jennings have developed and delivered an acute hospital service improving the experience of patients with a learning disability.
- Sharon Stothard, City Hospitals Sunderland NHS Foundation Trust
Respiratory nurse specialist Sharon Stothard has established a respiratory clinic for people with a learning disability. The clinic is empowering patients to be able and confident to manage their asthma.
- Warren Cocker, Danshell Learning Disability and Autism Services
Charge nurse Warren Cocker is leading an initiative at Wast Hills Specialist Autism Hospital to improve blood testing for people who have learning disabilities, autism and behaviours that challenge.