In this three-segment podcast sequence, part of our Inside ML series, we discuss the lessons learnt from the Clive Treacey Review about the struggles of the health and care system to meet the needs of an individual with learning disabilities (LD). The discussion panel includes Beverley Dawkins OBE, the Independent Chair of the Review; Hafsha Ali, digital transformation lead at NHS Midlands and Lancashire (ML); and special guest Elaine Clarke, Clive’s sister and lifelong advocate.

You can also join Elaine, Beverley and Hafsha in person on 23 April 2024 at NHS England Midlands’ event “Clive’s Way – See the Person, Hear the Family, Recognise the Ambition”. This free conference about the lessons from the Clive Treacey Review invites commissioners, providers and professionals working with people with a learning disability and autistic people in health and local authorities and third sector organisations across England.

Intro to the series

Clive Treacey faced living with LD and epilepsy, desiring a full life, but was often overlooked by the system. He was deprived of his liberty in the last ten years of his life, experiencing institutionalisation. As his mental health and physical condition deteriorated, he died at 47. It was evident that opportunities to aid his independence were missed. In response, his family initiated a campaign named “Clive’s Story,” aiming to inspire change for individuals in similar situations to be treated with more dignity and respect.

Episode 1: About Clive’s childhood

Clive was determined to never let his suffering hinder him and was an incredible artist. His biggest gift was his heart. Unfortunately, epilepsy seizures became a dominant part of his life. Following his diagnosis, he was excluded from mainstream education within the first 12 months, marking the beginning of his deprivation of independence. It was thought that simply accommodating his education on the ground floor of the school he was at could have helped, but instead, he was sent to a school for children with greater needs.

Educational journey and challenges

Despite continuing his education, his illness created significant barriers. He faced challenges and restrictions that he couldn’t understand or accept. After college, he went through a series of 16 placements, moving because the placements he was at couldn’t cope with his illness. There was a placement that he was doing well at, but squabbles over funding put an end to that placement.

Evidently, the places Clive was sent to were completely unacceptable, highlighting a lack of planning in his care. People with LD often do not receive prompt diagnosis or appropriate care, with symptoms frequently misattributed to other causes – in this case, Clive’s epilepsy, leading to late or incorrect diagnoses.

Clive’s last ten years and his hospitalisation

Clive spent the last ten years of his life moving between hospital settings, with hopes of rehabilitation dashed by issues like missing equipment, lack of trained staff, and chaotic care records. This culminated in an unfortunate event leading to his death on 21 January 2017, where emergency staff could not resuscitate him effectively and could not provide the emergency service to the correct postcode to attend promptly.

Episode 2: The aftermath of Clive’s death

The family was shocked by the autopsy results, which seemed to bear no relation to their knowledge and understanding of the circumstances surrounding Clive’s death. The inquest into his death highlighted systemic failures. After three years of campaigning by Clive’s family, NHS England commissioned a review, delivered by NHS ML, with Beverley Dawkins appointed as the independent chair.

Episode 3: The review and its impact

The review, published in December 2021, made 52 recommendations across ten themes. It aimed to influence not only NHS England but the entire healthcare system. The campaign to implement these findings has been vigorous, with the team striving to create a movement for change across disciplines. The family has been at the centre of delivering the review.

Continued efforts and future plans

The focus remains on ensuring Clive’s story prompts systemic reflection and change, moving beyond mere action completion to genuinely influencing healthcare practices. The NHS ML team, along with Clive’s sister Elaine, forms a ‘conscience group’ to drive and account for this change, keeping Clive’s story and spirit at the heart of their efforts.

NHS ML continues to work with NHS England and Clive’s family to affect change across nationwide health systems.