Jack's Story

Jack’s story of his admission to University Hospitals of Morecambe Bay NHS Foundation Trust demonstrates how person-centred care and reasonable adjustments across health and social care can ensure patients with a learning disability and autistic patients receive fair access to good quality care. It also demonstrates good multi-disciplinary team (MDT) working with Jack at the heart of decision making, and how the role of the learning disability hospital liaison nurse was fundamental to coordinating his complex hospital admission.

Jack is in his 60s with a moderate learning disability. He is a private person with a fear of healthcare appointments who enjoys the pub and meals out. He moved in to supported living with another tenant after his parents both died.

When Jack experienced kidney problems and incontinence he was brought by his care manager for a urology consultation and became very distressed, refusing to enter the hospital. Although easy read information about his investigations was provided, Jack became upset and refused to engage in any discussions. It was agreed that Jack did not understand the rationale and urgency to see a hospital doctor.

Following a telephone consultation and assessment and an online meeting, the care management team agreed with Jack’s family that he wasn’t able to understand the proposed medical investigations and probable intervention and therefore lacked capacity to make a decision about his treatment.

A Best Interest Decision was made under the Mental Capacity Act (MCA) concerning Jack’s care - with his family, carers, the trust’s safeguarding, legal and community learning disability teams (CLDT), the hospital’s MDT team, the learning disability liaison nurse/matron and the consultant urologist (the decision maker).

CLDT nurses tried sharing more desensitisation techniques with Jack, however the need for urgent intervention concluded with Jack’s family, care managers and the clinical team agreeing to his sedation at home before transfer to hospital for assessment, care and treatment.

A consultant anaesthetist and theatre staff arrived at Jack’s home in the morning. An ambulance was parked out of sight until Jack was sedated and settled. Jack's carers supported him during the sedation process and once stable paramedics transferred him to the ambulance. On arrival in theatre, a catheter was inserted, and Jack was transferred to the day surgery unit for recovery. He settled on the ward and his niece stayed with him for the duration of his three-night stay.

The same process has been used to facilitate Jack’s continued treatment at the hospital, but with reasonable adjustments when needed. For example, when Jack needed renal blood tests but refused to attend, a nurse from his GP practice came to his home to take the blood tests instead. Where possible the urology consultant and specialist nurse also facilitate home visits, while district nurses manage any catheter changes.

Jack’s carers and the learning disability hospital liaison nurse who has known him for over 15 years say that Jack is a ‘changed man’ since the procedure. Clearly it has enhanced his physical, emotional and psychological wellbeing and improved his quality of life. He is quite proud of his catheter bag, showing it to anyone he can, and his carers think he will be soon be able to empty it himself.

Jack’s story is regularly shared by the hospital’s learning disability and autism team to cascade the lessons learned from the court, the MDT process, and making reasonable adjustments, with Jack at the heart of all decision making.