A decade-long project to improve the experience of children and young people with autism and learning disabilities who come to Royal Manchester Children’s Hospital (RMCH) for planned or emergency treatment has been shortlisted for a national award.
The Recognising Autism Management Programme (RAMP) at RMCH is celebrating both its tenth birthday and being recognised in The National Autistic Society’s Autism Professionals Awards 2018, as one of the three finalists in the Outstanding Health Services category.
Autism is a lifelong developmental disability that affects the way a person communicates and relates to people around them. Children and young people with autism have difficulties with everyday social interaction, which can make medical appointments and treatment a very challenging and distressing experience for them.
Making hospital visits less worrying for these children and young people and supporting their families was a key priority for the RAMP. The programme is led by Frances Binns, Consultant Specialist Adviser for Complex Needs, Autism and Learning Disabilities at RMCH. Working with the young patients, their families and RMCH staff since 2007, the healthcare professionals involved with RAMP have developed ways of making communication more accessible. They have introduced pictures explaining hospital procedures such as blood tests or X-rays and by social stories and visual timetables to help the patient and their family’s experience. .
A dedicated paediatric pain profile used new methods to help to improve pain assessment and management for children and young people with autism who might not be able to explain in words how they feel. For young patients who find public areas such as outpatient clinics overwhelming, patient pagers were introduced so they could wait in smaller, quieter areas and then go straight to their appointment.
At each stage of treatment, there are now processes in place to ensure the particular needs of these young patients are recognised and adjustments are made to support them. RAMP has enabled RMCH to create an autism friendly hospital, with autism and learning disability champions in each department, routine training for new staff in caring for these patients and regular learning and education sessions for all staff.
The latest department to implement RAMP is Paediatric Critical Care (PCC) and the Paediatric Trauma team. Starting in March 2017, they have been working collaboratively with colleagues to identify patients who may need adjustments to the usual diagnosis and treatment approach. In emergency situations, responding quickly and having a clear protocol to follow can make a significant difference to how the child copes with treatment.
“We used lessons learnt from patient experiences to improve our communications, listening to what matters to our patients and their families. This open communication supports a caring relationship, helping us to tailor our care to individual patients,” explained Denise Bennett, Ward Manager for PCC.
The PCC team, which included Junior Sister Emma Roach, Staff Nurse Samantha Collins and Health Play Leader Lisa Morton, have invested in a rainbow trolley for staff to use, containing communication tools familiar to families with children with learning disabilities and autism. Prior to planned admissions to PCC, families have pre-admission visits to help reduce the agitation of young patients. Even for children admitted as an emergency, the team have worked with the North West and North Wales Paediatric Transport Service (NWTS) to ensure all children are assessed to establish their needs before coming into hospital.
“In anticipation of children going home, we have developed and are piloting an individualised support plan that parents can use, highlighting specific needs for their family when medical procedures are required. This aims to reduce anxiety and improve patient experience during future appointments,” added Denise.
“There has been a fantastic response to RAMP from staff across RMCH and the feedback from the families we care for is that it makes a huge difference to their experience of hospital and healthcare treatment,” said Frances Binns.
“We have been sharing our approach and results with colleagues in the other hospitals in our Trust, across the NHS and internationally, and feel honoured to be shortlisted for the award in recognition of our work.”
The winners of the Autism Professionals Awards 2018 will be announced on Wednesday 7th March.
One family which has benefited from RAMP is that of five-year-old Sam*. Diagnosed with autism aged three, Sam was brought to RMCH as an emergency after being involved in a serious car accident. He needed surgery followed by care in the Paediatric Intensive Care Unit (PICU), Paediatric High Dependency Unit (PHDU) and eventually on a ward.
Sam spent almost five weeks in hospital. He was understandably very anxious and without exception all of the hospital staff did everything they could to reduce his anxiety, said his mum.
The RMCH team gave Sam’s mum a special ‘My Traffic Light’ communication booklet to fill in which explained Sam’s likes and dislikes to the nurses, things that would help him during his hospital stay, ways in which to communicate with him, things that would cause him anxiety and those that would make his hospital stay better.
Over the following days and weeks nursing, medical, allied health professional staff, working in partnership with education and other colleagues, all cared for Sam and his family and supported his recovery. After leaving hospital, Sam returned for regular check-ups and further treatment and all the staff were aware of his needs and were extremely patient with him.
Sam’s mum added: “The procedures put in place by the hospital to help children with autism are truly remarkable. The hospital has signage throughout – including right outside PICU and PHDU – with information about autism. I had a point of contact, Frances Binns, who was available to listen to any concerns I had and was always looking to make the experience less stressful for both Sam and I. Without the understanding and flexibility of all involved I believe this would have had a detrimental impact on Sam.”
*name changed to protect patient confidentiality