As part of Learning Disability Awareness Week 2021 (running from 14 – 20 June) Leicestershire Partnership NHS Trust (LPT) highlights its support and commitment to improving care for people with learning disabilities across Leicester, Leicestershire and Rutland.

Ensuring that learning disability patients and service-users have access to high quality and compassionate care that enables them to live their lives to fullest is a key priority for the Trust. LPT is currently taking part in a number of projects and programmes to improve the patient experience, as well as listening to service-users and their families about what already works well and what they think could be done differently.

One of those projects is the Learning Disability and Autism Programme. The three-year programme launched in April 2021, building on the work of the Transforming Care Programme and will see LPT work alongside local authorities, CCGs and other key partner organisations in Leicester, Leicestershire and Rutland.

By coming together with key partners, the organisations listen to feedback and work together to create a more joined up approach to care and support for people with learning disabilities and/or autism. The various teams and services involved, from specialist nurses to social workers, work together to provide wrap-around support, focusing on a person-centred, proactive and preventative approach.

One key goal of the programme is to allow people with learning disabilities and/ or autism to remain in their community, near friends and family, and in their own home, wherever possible, reducing unnecessary hospital admissions. As a collaborative, the Trust and it’s partners will build a new approach to give individuals the support, care and skills they need to achieve their goals and enjoy taking part in hobbies and work.

To support the work of the Learning Disability and Autism Programme, the Trust has focused on improving its own learning disability services. In April, LPT completed its first year of its three-year Learning Disability Quality Improvement Plan (LD QIP) – as well as delivering on its improvement plan for the Agnes Unit, the Trust’s specialist learning disability inpatient service.

As part of the LD QIP, LPT has carried out a full review of how patients access care, including: updating the Trust’s 10 clinical pathways, completing a financial plan for the service, updating its IT systems and enabling virtual appointments, where appropriate – and has secured funding and carried out improvement works to its clinical care settings.

David Williams, Director of strategy and business at Leicestershire Partnership Trust, said: “Integrated care brings us together with a clearer purpose. I am extremely proud that in LLR we are championing this and making big improvements to enable people with learning disabilities to lead fulfilling and rewarding lives.”

Case Study – Ismail’s story

Hashim Duale – whose 20-year-old son, Ismail is autistic and has learning disabilities, has been supported by LPT. Hashim has seen first-hand how the Trust’s inpatient nurses and community care staff have gone the extra mile to make adaptions to support patients.

He said: “Ismail was originally referred to CAMHS but became an inpatient at the Agnes Unit as he was struggling with change that he wasn’t prepared for when leaving school to go to college. It caused him a great deal of distress. His inpatient experience was extremely good. The unit involved us as his family; we know our son and they made sure to listen to us. He received collaborative and timely support. I couldn’t thank everyone enough – I even wrote to the chief executive as I was so pleased with the professionality and care my son received.”

Ismail really likes to be clean and tidy and never forgets each Tuesday evening to put his bins out, not only for himself but also for his elderly neighbours. Following his stay in the Agnes Unit, the Trust worked with local authority partners to have a council house ready for Ismail to stay in. He is now very happy, living on his own, with the help of support workers.

Hashim added: “He is now an independent person. He has his own space, his own routine, he has his chores and still takes out the bins. This gives him calmness and enables him to thrive.”

Ismail was diagnosed when he was eight. To help other Somali families in similar circumstances to their own, Hashim and his wife Samia Ali used their experience to set up the Daryeel Autism community support organisation.

Samia said: “There isn’t a word for autism in Somali so it can be a very difficult time for families when they find out their child is diagnosed and English isn’t their first language, as there is no direct translation. They are not clear what is means and there is also a stigma.

“We want to try to help and support families to understand more about the help and support that is out there for them. We also want people to see us, be able to relate to us and feel some comfort. We want them to know it is OK and to ignore the stigma.”

As part of Learning Disability Awareness Week, LPT nurses will be supporting Daryeel Autism with two free talks being held over Zoom.

The first talk, ‘Managing Anxiety’ is being held on Tuesday 15 June at 10am – to join use the Zoom meeting ID: 838 8867 7462, passcode: 536178.

The second, ‘Managing Transition’ is being held on Wednesday 16 June at 10am – to join use the Zoom meeting ID: 810 8016 6853, passcode: 674512.

Anyone is welcome to attend the lectures. A Somali translation will also be provided after the lecture.