FROM FRIGHTENED TO LEAVE HOME FOR MORE THAN THREE YEARS, TO LIVING INDEPENDENTLY AFTER WORKING WITH OUR LEARNING DISABILITIES TEAM (LUKE’S STORY)
When Luke was 21 years old, he hadn’t been out of his house for more than three years. He was hardly ever dressed, he didn’t wear shoes and his mum, who was his care-giver, said every day was a struggle to complete basic tasks such as eating, drinking and washing.
Luke is non-verbal, he has learning disabilities, autism, epilepsy and Pitt-Hopkins (PTHS) which is a rare genetic syndrome. The symptoms include learning difficulties, seizures and episodes of unusual breathing patterns. People with PTHS are usually very happy and affectionate, but can become frustrated when they find it difficult to communicate.
His mum Christine said: “He was a very smiley, happy young man. Everyone who used to support him always said what a pleasure it was because he would always be very receptive.”
Luke and his mum, Christine
Life changed when Luke was 18 years old and he chose to stop going to school. Christine remembers: “As he got older, we had a lot of behavioural challenges and as a family, we were in a difficult place. Meeting the learning disabilities team helped open the right door to find the help that we needed.”
Clinical Lead for Positive Behavioural Support, Leanne Eastman was introduced to the family by the Primary Care Liaison Nursing Team. They had requested support for Luke following a number of hospital admissions. Leanne first completed a needs assessment. She said: “Luke has quite a complex array of diagnoses. Even though he doesn’t communicate verbally, he has so many beautiful ways of communicating, and it is just about listening and seeing and responding to what Luke is telling us.”
Leanne worked with the multi-disciplinary team of other health professionals to build up Luke’s trust. They visited his home and started with activities that he likes, such as stickering, for 20 minutes at a time. During the following 18 months, the visits increased to 90 minutes with Luke really engaging in the activities. They also supported Christine to improve her well-being so she could continue in her caring role.
Leanne said: “There was a lot of talking things through with Christine to allay her fears. I was also working with health and social care around the commissioning aspects of recruiting a team of people, ensuring that they were skilled and upskilled to work with Luke.”
Luke is now 23 years old and lives independently with the support of carers. They help with day-to-day living and accompanying him on trips out around Devon and Cornwall.
Luke on a daytrip with carers
Christine said: “It has involved a lot of health professionals to find the right care provider to take things forward for him and get him the independence, which is ultimately where he is now.
“When Luke is well and happy and has good trust in the people that support him, it makes such a difference. It proves to me that, as his mum, I don’t need to worry. They’ve got this. To see where he is now is amazing. It has been a long journey with a lot of people involved, but ultimately now, it is where he needs to be. I am so happy for him because that is just what any parents wants. They just want their children to be happy and healthy, and I am very proud of him.”
Leanne added: “My heart is warm. The change in Luke from where he was two years ago, to how he is now, is lovely. He looks so happy and relaxed.”
The Community Learning Disability Service is for adults with learning disabilities in Plymouth. The team provides specialist assessment and intervention to support people’s health related needs. They support individuals, families, carers and other health and social care services to ensure that they can make the reasonable adjustments that people require. The team includes Community Nurses, Dietician, Occupational Therapists, Positive Behavioural Support Advisors, Psychiatrists and Speech and Language Therapists.
Speech and Language Therapist Sarah Veitch said: “All of us as learning disability professionals, just want to make sure that the person, no matter how complex they might seem, are still a person and they deserve to have their voice heard and be valued.”
BE YOURSELF AND THINK BIG! (DAVID’S STORY)
David has been supported by the staff at Westbourne and is a bit of a social butterfly. He likes to see the positives and not the negatives of learning disabilities and has made lots of friends through his hobbies.
David keeps a busy calendar and takes part in many activities, including hosting two shows on Omnium Radio, a community radio station aimed at helping people with additional needs get involved in the radio. He plays all-sorts of music and likes to run competitions and have guests onto his show.
He is also passionate about acting and has been part of several local theatre groups. He has recently set up a theatre group called Curious Stagecraft for neurodivergent adults who are interested in all aspects of theatre.
Dr Simon Bonell, Consultant Psychiatrist with the team at Westbourne, said: “David is a shining example of someone who has achieved a great deal. We are really keen that everyone sees David as a person, rather than seeing a disability first.
“It is a real privilege to work in the Learning Disabilities team. It can be incredibly rewarding to see the positive impact and positive changes that people make, and we are with them through that journey.”
David has some important words of encouragement for people with a learning disability: “Be yourselves, think of acting, think of sport and everything that (through learning disabilities) we do best in. Have a good day, enjoy yourself and think big!”
MAKING FRIENDS AND LEARNING ABOUT MENTAL HEALTH (PAV AND DAVID’S STORY)
Pav and David became close friends through the mental health skills group at Westbourne and meet up each week for lunch.
The group aims to help people to understand their feelings and tailor coping mechanisms that are specific to the individual.
Pav and David have recently become participation partners for the group. This means that they support newcomers, do demonstrations, and make sure that everyone in the group feels safe and heard.
Isabel Smith, Service Manager of the Community LD Team, said: “The Mental Health skills group is made up of a variety of professions. This means that the sessions are not scripted, and we can be creative about how we support each person. It is really important to be person-centred as it ensures we can support positive outcomes for those involved.”
Adults with a learning disability can self-refer to the skills group by contacting the team at Westbourne or be referred by a healthcare professional.
