Learning Disabilities Nursing

People with learning disabilities are among the most vulnerable and excluded in society. Learning disabilities nurses have a unique role in supporting people, their families and carers to achieve and maintain good health, wellbeing and their full potential. They work to break down barriers that may prevent participation in society, or result in health inequalities or ill health. This award is open to individual registered learning disability nurses or learning disability nurse teams working in acute or community settings, in the NHS or independent sector. Entrants must be able to demonstrate the benefits of their work in terms of evidence-based, person-centred practice sustaining health and improving quality of life.

Dartford and Gravesham NHS Trust
Emergency department familiarisation visits

Health anxiety in adults with Learning Disabilities. People with learning disabilities frequently contend with a lifetime of adversity, inadequate social support and poor coping skills. These factors contribute to increased vulnerability to stressful life events which may trigger anxiety disorders. The Emergency Department (ED) is often perceived as a busy, chaotic and stressful environment and therefore we wanted to ensure that our most vulnerable patients had awareness of the environment in order to reduce stress and anxiety should they ever need care in the ED environment. To promote confidence in healthcare staff and services available. Staff need greater awareness of the needs of patients with learning disabilities requiring emergency care in order for them to be able to provide care without barriers. To breakdown barriers to accessing acute health services. To familiarise emergency care staff with the needs of support that people with LD might need in the ED. We contacted local community groups and explained to them the initiative to gauge the interest in touring the emergency care environment. The interest was there and we therefore engaged with local community groups. We needed to ensure that we were able to flex services in order to make reasonable adjustments that met with individuals needs should they be identified. This then allowed us to holistically support our patients. Our key priority was to ensure that participants felt empowered and confident to express their needs and wishes without judgement thus reducing stress and anxiety. Our aim for the future is to make this a rolling programme of work with the group that we have already work with and then to extend the programme out to other local community groups. Once established we hope to extend the work across the organisation including within elective services.

Herefordshire and Worcestershire Health and Care NHS Trust
New to care: a learning disability pathway

Learning Disability Replacement Care and Children’s Short Breaks Service provide respite for adults and children with a Learning Disability with complex medical needs and/or behaviours that challenge. Due to the nature of the services, recruitment has been a challenge, with vacant HCA posts for 12 months+. Due to the staffing issues, the services had to implement closure nights in agreement with Commissioners and Senior Managers which had significant impact on service users and families. I was made aware of the Health Care Support Worker Development Program that is run by NHSP by Senior Manager and contact with the Trust Operations Manager for NHSP who linked me in with the Education Lead, Sharon Smith. Due to the unique nature of the services, Sharon and I co-designed a curriculum based on the needs identified by the registered staff, service users and their families (see Appendix 1). A specific job description was written, and a recruitment drive completed jointly with NHSP and Trust. Three candidates were identified, following an interview by myself and a NHSP recruiter. Feedback received from the participants was that they really valued the specific LD focus of the curriculum which included an additional classroom day and a tour of the units. Constructive feedback received from the participants was that the fourth training day would have been better being done first. There are now 3 additional staff members across the 3 units which has had a positive impact on patient safety and care, staff wellbeing and has meant less closure nights for service users and their families. The future plan is to complete a scoping exercise across the 9 other NHS-run respite care services as well as the Learning Disability Assessment and Treatment wards in England with a view roll this out nation-wide/for those Trusts with LD inpatient/replacement care facilities.

Maidstone and Tunbridge Wells NHS Trust
Acute trust learning disability pathways

The hospital Learning Disability Liaison Nurse (LDLN) has developed a suite of pathways, detailed below: Adult & Young Person Learning Disability Oral Sedation for Minor Interventions Learning Disability Complex Admission Pathway for Medical Interventions Under General Anaesthetic Reasonable Adjustment Guidance for Administrative Staff. The LDLN regularly consults with People with Learning Disabilities (PWLD), their families/carers and receives notifications of Learning Disability (LD) complaints. Similar themes and trends were noted: Poor patient, family and carer experiences. Patient’s experiencing heightened anxiety and behaviours that challenges. Hospital processes and environment not being adapted to meet patient’s needs. When the LDLN investigated feedback, it became apparent bespoke LD pathways were lacking. The LDLN identified key departments in which bespoke pathways were required. For example, access to routine investigations and admissions with the use of oral sedation or general anaesthetic. Key challenges and how these were overcome: Challenges flexing the current hospital processes and pathways to meet the needs of PWLD. LD pathways were piloted to ensure safe practical implementation. There was some concern about the proposed levels of sedation, in many instances all the other less restrictive options had been unsuccessful therefore without the higher use of sedation the procedure would not occur. For example: administering a general anaesthetic to achieve a CT scan. The LDLN liaised with the anaesthetic team to gain expert advice. Bed availability especially during winter pressures. Only urgent admissions were planned in winter, the LDLN has developed good working relationships with the bed management team and matrons to negotiate admission dates. The overall outcome was PWLD have improved access to healthcare. PWLD have successfully completed vital health investigations that they could never previously achieve and these have been completed in a safe manner. Both patients and staff have reported positive feedback and experiences. LDLN referral rates have increased.

Medway NHS Foundation Trust
VIP Pathway

Mr ‘J’ was a young man with severe learning disabilities, challenging behaviour and autism spectrum needs who was highly anxious in unfamiliar environments (and of considerable size and potential strength), contact defensive to touch and who had refused any kind of health treatments for a number of years. A best interests decision involving in all parties was made given his lack of mental capacity to understand the issues at stake. His main health issue requiring resolution was for colorectal care, then outstanding dental and foot treatments, he had also not allowed his hair to be cut in adulthood. These areas of need were all dependent on a highly organised and exact admission free of delay with his next of kin and carers closely involved at all points. The clinicians concerned were confident in giving their respective treatments however the process depended upon him being successfully anaesthetised which was the biggest challenge given his aversion to clinical environments and medical equipment. Careful coordination was required to get all parties organised for the procedures. This included an unusual but effective reasonable adjustment where 'J ' was given initial sedation while standing instead of laying as he would only lay down on his own bed and could not adapt to the theatre setting. With careful timing he was gently guided as he became increasingly sleepy to rest upon the theatre bed and then to a side laying position to allow full anaesthesia to take place and for procedures to commence.

Mersey Care NHS Foundation Trust
The HOPE(S) model

Long term segregation (LTS) is a highly restrictive practice which evidence indicates causes physical and psychological harm and trauma to people in services, both as patients and staff. To address this the National Director for Learning Disabilities and Autism invited Mersey Care to establish a programme with NHS England to adopt the HOPE(S) model developed at Mersey Care Foundation Trust nationally at scale. The aim of the HOPE(S) programme is to enable culture and practice change by building capacity and capability in the system to end the use of long-term segregation and improve patient safety. It has deliverable outcomes for individuals, their families and carers, NHS funded organisations and the wider system. Sixteen senior practitioners on a three-year development programme work within the geographical range of their own region. Each year, NHS England identify individuals who are subject to segregation in NHS funded inpatient hospital settings to receive support from the programme. A National Oversight Group for the HOPE(S) programme co-chaired by Sir Norman Lamb and Gavin Harding MBE provide oversight of programme deliverables. The outcomes achieved to date has been through collaboration with people with lived experience, front line staff and system leaders to create the cultural change required across in-patient services to end the use of long-term segregation which is traumatic and damaging for all involved. Since May 2022, the programme has supported 89 people in long-term segregation. Of these people 63 receiving support from the programme have progressed out of LTS (71%). In terms of future plans, the programme has demonstrated its replicability and scalability through supporting 86 people in 31 NHS Commissioned organisations nationally, across 56 hospital sites and has supported 4 community providers to ensure safe transition of people from long-term segregation into their own homes in the community and prevent re-admission to services.

Mid and South Essex NHS Foundation Trust
Using virtual reality to support patients with learning disabilities and/or autism with healthcare anxiety

It is well known that people who present to hospital can be anxious in terms of what they expect to happen during their treatment. For a person with learning disabilities (LD) and/or autism, this anxiety can become so heightened their treatment may be delayed or even cancelled. The MSENHSFT Patient Experience (PEX) Team, which is led by a learning disability nurse, recognised an opportunity to use innovation to support this patient group and improve healthcare outcomes for this vulnerable population. The PEX team sourced and approached New Zealand-based company, oVRcome, who offer an at-home digital solution that uses innovative smartphone technology to help people with anxiety disorders/phobias to overcome them by familiarising themselves with certain environments, at their own pace and in the comfort of a safe space, using virtual reality (VR) exposure therapy The oVRcome team and PEX Lead designed storyboards and scripts based on patient feedback. and filmed scenarios within MSENHSFT hospitals, such as ‘what a clinic room looks like’ and ‘having a blood test'. Participants were given a VR headset and downloaded the app onto a smartphone so that they could access the videos at home. After the trial period, 70% of participants believed the VR tool has been useful for them, with large reductions in those who felt uncomfortable with sensory stimuli, including building size, crowds , medical staff and medical equipment. Some participants requested more videos relating to needlephobia. The project received SBRI Phase 2 funding in January 2024, focusing on creating videos of scenarios that would be encountered as part of the annual physical health check, as well as videos mimicking exposure style therapy for needlephobia, with an integrated dashboard option offering personalised support . This content was co-produced with 102 people including those living with LD, autistic people, supporters

Rotherham NHS Foundation Trust
Learning disabilities and autism team

Our team initiative addresses the challenges faced by individuals with learning disabilities and autism when accessing healthcare services across The Rotherham NHS Foundation Trust. Recognising the need for person-centred care and support, we set out to improve the quality of patient care and overall experience for this vulnerable population. We began by establishing a Learning Disability and Autism team within the healthcare trust, focusing on providing support and direct care across various healthcare settings including inpatient, outpatient, and midwifery services. Identifying key areas for improvement, such as increasing awareness of hospital passports and creating a more sensory-friendly environment to reduce anxiety, presented challenges in terms of implementation and ensuring effective communication and understanding by both staff and patients. However, through collaboration with patient experience groups, we co-produced meaningful changes based on feedback and suggestions from individuals with learning disabilities and autism. One outcome of our initiative was the implementation of traffic light magnets, which serve as a visual cue to remind healthcare staff to refer to a patient’s hospital passport for individualised care needs. Additionally, we developed sensory equipment such as distraction boxes and light therapy boxes, which received positive feedback for their effectiveness in reducing anxiety during hospital admissions. Looking ahead, we plan to continue our collaborative approach with patient experience groups to further improve services and enhance the overall quality of care for individuals with learning disabilities and autism. This includes ongoing evaluation of our initiatives, exploring new ways to make healthcare environments more inclusive and accessible, and expanding our bespoke pathways to ensure individuals receive tailored support throughout their healthcare journey.

Tees, Esk and Wear Valleys NHS Foundation Trust
STOMP in practice

The primary aims of STOMP are linked to quality of life improvements, through focused and holistic structured medication reviews and to challenge the inappropriate or over -prescribing of medication. The extent of over prescribing was highlighted by a report published by Public Health England, which showed that 30,000-35,000 prescriptions are issued each day to people with a learning disability and or/autism, for psychotropic medication who do not have a diagnosis of serious mental illness. This is twice as likely as the general population. Evidence shows that STOMP is best delivered as a collaboration between pharmacist and multiple healthcare professionals to ensure safe and effective de prescribing, guided by behavioural data and quality of life improvements. Pharmacists in Primary Care Networks are required to undertake structured medication reviews as part of the Network Contract Directed Enhanced Service, these should be a comprehensive and clinical review of an individual's medicines and detail aspects of their health.

The London Clinic
Not just making reasonable adjustments

At the beginning of the project the Clinical Site Team identified areas of improvement in care for patients admitted with additional needs. The team set out to develop a care framework within the hospital including -Identification and escalation of patients with additional needs at pre-assessment -Improved Patient Passports -admitting rooms and bathroom access -time booked for consultations -Policies -Training and Education -A consistent working group - assurance into the Patient Safety Committee -Patient Experience data including support from patients at the patient forum -Communication aids -Legal pathways review for - Power of Attorney, Advanced Decisions, Deprivation of Liberty and Safeguarding -Family/Carer involvement and complimentary accommodation This also included the appointment of 2 lead roles within the Clinical Site Practitioner Team including our Dementia Lead and our Learning Disability and Autism Lead. The team have taken a multi professional approach to the project making sure that all teams are working together to ensure this particular cohort of patients receive safe quality care that is tailored to their individual needs. There was exceptional interest from all teams to be a part of this quality improvement which made the changes and initiatives easy to implement. The main challenge in the project was allowing people time to make these changes happen. To do this we had to write this into our 2 leads job description and roster them a certain amount to hours to dedicate to their new additional role. Another challenge was to have a patient with additional needs on our patient forum. This took some time to find a person that was interested and had time to volunteer their ideas. However, this has now been achieved. This project has not only improved our approach and support for patients with additional needs and their families/Carers but also improved the staff's outstanding care.

University College London Hospitals NHS Foundation Trust
Learning disabilities champions

Over the last three years the learning disability team, consisting of Sarah and Courtney, at university collage hospital London have grown and expanded their work to ensure the patient voice at UCLH of this group of patients is heard. They have increased the monitoring and oversight of patients and completed repeated auditing to ensure improvements in patient care and staff understanding. Sarah and Courtney look to find the best outcome for all involved and truly exemplifies the values of the organisation and the essence of Learning Disabilities Nursing. Sarah and Courtney take personal pride in their work and thoroughly enjoy teaching, delivering training to all staff including Health care assistants, transport staff, RGNs, Doctors, allied health professionals, students, and volunteers. Sarah and Courtney work tirelessly and energetically highlight the needs of Learning disabilities and autistic patients transforming the landscape and becoming a vital part of UCLH fabric. The escalation of concerns around this vulnerable patient group has led to an increase in steering group meetings that are well attended. This allows concerns and challenges that these patients face to be raised at a high level and quickly tackled. There has also been a change in incident reporting to ensure that patients with a learning disability are highlighted and themes identified. This has led to improve health inequalities and good patient outcomes as shown by audit data and patient feedback. Introduction Following on from this work their leading project has been the champions program. This has not just been the appointment of people through out the trust with an interest in the area, but an education and inclusion program to ensure those appointed as champions are equipped with the right knowledge and skills. The role of the LD Champion is to work with the staff on their ward or department, y

University of Stirling
Raising our sights: a simulated practice learning experience

Raising our Sights: A Simulated Practice Learning Experience (SPLE); This initiative was developed for Nursing and Paramedic students to understand their role as individual practitioners to promote and develop communication and therapeutic relationships in the pursuit of ensuring accessible and equitable healthcare for people with a learning disability. issue you were trying to resolve? Health equality for people with a learning disability continues to be a major concern. Many of the inequalities people with a learning disability and their family face are due to: • Lack of knowledge among health professionals what a learning disability is and how this can impact on their quality of life and quality of healthcare. • Lack of understanding what reasonable adjustments are and the responsibility all healthcare professionals have in their implementation. • There is limited capacity for clinical placements/experiences for undergraduate health professionals to engage and interact with people with a learning disability and families to understand their needs. The SPLE week aimed to mirror an observational placement by taking each student as close as possible to the clinical environment. It allowed students to learn and gain insight into the role that adult, mental health nurses and paramedics can play, directly or indirectly in ensuring accessible and equitable healthcare. How did you go about it? A steering & stakeholder group lead by Linda Hume (RNLD) & Dr Anne Taylor included members of NHS Forth Valley Community Learning Disability Team & two-family carers, this group coproduced and co-delivered this initiative. Challenges faced and what outcomes did you achieve? Several practical considerations were considered to ensure a focus on coproduction and meeting the education and developmental needs of students. Plans for this initiative? • Learning and Teaching festival – University of Stirling • Workshop on work-based learning. o Novel and contemporary pathways & Coproduction