Peter’s story 1 year on

Peter is 34 years old, has a Learning Disability, Epilepsy and Autistic Spectrum Disorder.  He is currently living in an adapted bungalow in Walsall, with 2:1 support from ECHO Supported Living Services.

Previously he had been cared for and supported successfully at an autism hospital in Birmingham for more than six years. This hospital provided therapy, treatment and support for six men who were living with complex autistic conditions and learning disabilities.

Unfortunately, a Service User was admitted who was not compatible to live with Peter and his mental and physical health suffered, with the COVID-19 lockdown exacerbating this.

In November 2020, Peter moved to his own home supported by ECHO Supported Living Services, a move his mum Jane never envisaged.  She said: “We would never have chosen a supported living service for Peter, we expected to be looking for a care home”.

“However, Sharena and Warren who worked with Peter at his previous placement moved to ECHO and this encouraged us to take up the offer of the bungalow and support package.  If they had not been there, I don’t believe we would have chosen this route for him.”

Peter had his first chest infection at 11 days old, spending time in hospital on a regular basis and his first seizure, which lasted around 30 minutes, when he was just seven months old. Over the following years he has up to 25 seizures a month, in clusters of six or seven.  Peter has severe learning disabilities, autism and challenging and complex needs, including his epilepsy.  This means his care and support needs are significant.

Peter’s new bungalow is on one level and was bespoke adapted to meet his needs including a wet room, sliding doors that open wide, a hospital bed, oxygen, a specialist reclining chair and rails all around the property.  He also has his own wheelchair adapted car which his carers use to take him on trips to local places such as Walsall Arboretum, Sandwell Valley and local parks and beauty spots.

Jane said: “Peter has seen a massive improvement in the quality of his life, and in his overall mood.  There have even been tiny positive changes in his communication and mobility.

“We are determined to give him the best life possible. He has been diagnosed with progressive ataxia, linked to epilepsy which means his condition will degenerate over time.  The most important thing is he is well-liked by his lovely carers who go out of their way to make him happy and comfortable.  Peter most definitely likes having two ladies at his beck and call and we are all delighted that the placement is working so well.  If Peter is happy then I’m happy.”

This demonstrates that the philosophy underpinning the Transforming Care Programme can be a reality and supported living can have really positive and effective outcomes for people with complex and multiple needs enabling them to be more in control of their own lives