Learning disabilities team transforms hospital experience and culture of care

Team’s programme has reduced hospital stays, introduced a 'champions' network and provided training

Royal Liverpool and Broadgreen University Hospitals NHS Trust's learning disabilities team is improving awareness and skills beyond its own hospital

  • Programme has succeeded in halving length of hospital stay for patients
  • Hospital ‘champions’ network provides a forum to address patients’ needs
  • Training and information packs on the programme are now used throughout the region

Liverpool learning disabilities team’s Ged Jennings and Serena Jones
at a patient's bedside. Picture: John Houlihan

An acute hospital team that transformed the hospital experience of people with learning disabilities has won the Learning Disability Nursing category of the 2019 RCNi Nurse Awards, the profession’s top accolade.

The learning disability nurse team is transforming the experience of individual patients at an acute hospital while evidencing its value by halving patients’ length of stay.

The team – including service lead Shaun Lever and learning disability acute liaison nurses Ged Jennings and Serena Jones – has also transformed the culture at the Royal Liverpool and Broadgreen University Hospitals NHS Trust by developing a training programme that is being rolled out throughout the region.

‘People with learning disabilities or autism can have a terrible experience in hospital but we have made great strides in improving that at the Royal Liverpool,’ says Mr Jennings. ‘We make their stay as good as it can be.’

Support for patients and carers

What the judges said

Judge Margaret Sneddon, honorary senior research fellow at the University of Glasgow, says: ‘The team at Royal Liverpool has not only introduced a service that has transformed care, reduced hospital stays and prevented complications and readmissions, it has integrated the service and educated all staff, not just health professionals, to change the culture and ensure its sustainability.’

‘We break down the barriers to these patients coming in. They are often fearful because of previous bad experiences and we support them through their whole journey, including their discharge and liaising with community services.’

The team’s mantra is ‘every patient, every day’. It visits inpatients and outpatients to support patients and their carers, in most cases completing a risk assessment on their first day of admission and advising on any reasonable adjustments needed.

‘We listen to concerns and help build communication between the families and the teams looking after them,’ says Mr Jennings. ‘It is often simple things that make the difference, and knowing what the patient prefers.

‘For example, one woman with a learning disability wouldn’t eat, but we found out that she always had a cup of tea with her meal. Once the ward team provided that she ate all her meals. Families have our contact numbers and can call us whenever they need us. The feedback we receive from them has been very positive.

Shaun Lever (second left) with
Serena Jones (standing) and Ged
Jennings. Picture: John Houlihan

‘The hospital teams get to know who we are, that we are a real benefit to the service and are approachable.’

Patients with a learning disability are clearly indicated on an electronic whiteboard system and are supported by a network of 110 ‘champions’ who include staff ranging from the chief nurse to cleaners.

Profiles of nurses and champions

A website offers easy to read information and every patient receives an information pack including a ‘health passport’ that can be used with other hospitals and service providers. The one-page easy-read profile of learning disability nurses and champions has proved particularly effective.

Mr Jennings explains: ‘One patient told me on discharge that they had been scared to come into the hospital but when they saw the healthcare assistant champion’s profile they felt they were going to be looked after.’

The team, launched in 2016, quickly realised that it needed to raise awareness throughout the hospital.

‘When the learning disability nurses were introduced to the wards it was initially misunderstood as “elderly nurse”,’ says Mr Lever. ‘Terminology such as “reasonable adjustments” was alien to staff and they didn’t know the difference between “disability” and “difficulty”.’

The team developed a foundation level learning disability and autism awareness training programme that has been delivered to more than 3,400 staff, students and volunteers.

‘People with learning disabilities or autism can have a terrible experience in hospital but we have made great strides in improving that’

Ged Jennings, learning disability acute liaison nurse

The training and information packs have been implemented across 12 trusts and within primary care in Cheshire and Merseyside.

‘Staff can be scared of caring for people with learning disabilities,’ says Ms Jones. ‘They are scared they might say the wrong thing or use the wrong terms. The training means more staff are comfortable in their communication and delivering that care, and they know where to come to ask questions.’

Mr Lever says: ‘This uplifting in awareness and skills has resulted in a massive cultural change. Also important has been having the credibility of learning disability nurses at the service’s heart. They are credible role models advocating for patients and carers by demonstrating how reasonable adjustments just make sense to everyone.’

A meeting of the Liverpool learning disability team's steering group.
Picture: John Houlihan

The evidence shows an integrated acute learning disability nurse team makes sense to managers too. Median inpatient length of stay has fallen from 6.5 days in 2016-17 to only four days in 2018-19.

In 2017-2018 they saved 1,375 bed days, and the length of stay for over 543 patients was halved.

Mr Lever says: ‘Length of stay massively impacts on all patients’ and carers’ experience as well as clinical outcomes, including the difference between life and death. Patients with learning disabilities have previously fared worse, with extended hospitalisation in an often frightening environment.’

The team was named as winner of the Learning Disability Nursing category in the 2019 RCNi Nurse Awards.

‘This uplifting in awareness and skills has resulted in a massive cultural change’

Shaun Lever, learning disabilities lead

Mr Jennings says the team is delighted to have won. ‘I am proud to be a registered learning disabilities nurse and we are so honoured to be part of the awards – especially this year when we are celebrating the centenary of learning disability nursing.’

The team is most proud of the change it is making to the experience and outcomes of patients with learning disabilities and their families.

‘They have been fighting for years’

Ms Jones says: ‘The fundamental thing about this service is that everyone is able to give the best care – the learning disability nurses cannot be there 24/7 so we are supporting the consultants, doctors and nurses to care for complex patients.

‘We are helping them to understand their families. As learning disability nurses, we know the journey these families have been on. They have been fighting for years and that is why they may appear argumentative and difficult at a hospital appointment or a ward round.

‘We are changing care and making a difference, and we are so proud of the staff who have taken this on board and are willing to make things better for patients with a learning disability now that they know how.’

Members of Liverpool’s learning disabilities team (L-R): Suzie Youds, Colin Hont,
Lol Johnston, Shaun Lever, Serena Jones, Ged Jennings and Miguel Alegre.
Picture: John Houlihan

Database captures evidence of team’s progress

One of the aspects that makes the Royal Liverpool’s learning disabilities nurse team stand out is its data – ensuring that its effect is evidenced and that it constantly improves its service and keeps the needs of people with learning disabilities at its heart.

‘Our comprehensive and unique database captures capacity, deprivation of liberty orders, DNAR (do not attempt resuscitation), health passport provision and risk assessments as well as length of stay,’ says service lead Shaun Lever.

‘We provide bespoke training to our clinical coders and integrated activity data into our many IT systems that now allows us to identify accurately exactly what our activity is.’

‘We are so proud of the staff who have taken this on board and are willing to make things better for patients with a learning disability’

Serena Jones, learning disability acute liaison nurse

‘NHS England have expressed interest in how this data will not only evaluate our service outcomes but also act as a robust business plan and transferable model.’

Patient experience is also captured. Volunteer services including people with a learning disability support the service, in keeping with the Ask Listen Do initiative. The team collects patient and carer feedback by calling them after discharge.

Patterns and themes

‘This information is reported at strategic levels where patterns and themes are established and additional support can be provided either directly by the team or department managers where required,’ says Mr Lever.

‘Ultimately, patient and carer experience will continue to inform us on where the service is delivering or requires further evaluation and development. Keeping service users involved in decision-making will ensure this happens.’

People with learning disabilities are part of the service’s steering group. ‘They soon tell us if something is not right or if there is something we are not doing,’ says team member Serena Jones. ‘We work with them – everything is co-produced.’

The team’s training programme was reviewed by members of the charity Mencap Liverpool. ‘They have contributed pictures and shared their experiences and given their opinion,’ says team member Ged Jennings. ‘We wanted to make sure it reflected what people with learning disabilities want the people looking after them to know.’

Mr Lever adds: ‘We have received many compliments from the learning disability community locally and nationally. Things don't always go as we would prefer or plan for but these situations can and are used productively to rethink or adapt our processes, communication and overall practice.’

Further information

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