Supporting People with a Learning Disability in Hospital

1. Supporting People with a Learning Disability in Hospital Taking the horror out of hospitals

2. Stating The Obvious... • Nobody likes going into hospital • It’s an unfamiliar environment • We may have a significant illness or be in pain • We feel vulnerable • We may need unpleasant or painful treatment • We may be there for a long time • We are always glad to go home!

3. So What’s It Like for a Person With Learning Disabilities? A person with a learning disability is twice as likely to need hospital services. They may have: • additional health issues such as epilepsy, sensory impairments, respiratory problems and be at risk of choking • No meaningful method of communication • Challenging behaviour • Difficulty in understanding what is happening to them • Fear and confusion about their treatment

4. What Parents Are Saying….. • “Unless we stay with my daughter 24/7 on the ward, then I fear that she would not survive the hospital stay” • “Nurses say they haven’t got time to read what parents have carefully and painstakingly recorded” • “Our several experiences at this hospital have demonstrated that all of that (Traffic Light Document) is of absolutely no use at all in preventing needless distress, pain and stress to my daughter” • “My local hospital will not use anaesthetic gel when pulling out her PEG and reinserting a new one every twelve weeks. Why? It is ‘Policy’. The doctors prod and poke about inside her stomach, repeatedly ignoring her gasps (she cannot express her feelings nor cry out nor wriggle away) while they make their attempts”

5. What the Health Professionals Say…. • 39% of doctors and 34% of nurses said that people with a learning disability are discriminated against in the NHS • 53% of doctors and 68% of nurses said they needed specific guidelines on how care and treatment should be adjusted to meet the needs of those with a learning disability • Doctors say that patients with a learning disability receive poorer care • 35% of health professionals have not been trained in how to make reasonable adjustments for patients with a learning disability, which can often mean the difference between life and death • 45% of doctors and 33% of nurses surveyed admitted that they had personally witnessed a patient with a learning disability being treated with neglect, or a lack of dignity, or receiving poor quality care Source: Mencap ‘Getting It Right’ online survey of 1000 healthcare professionals

6. Why Should We Be Worried? This is the story of Kyle Flack...... Kyle was a young man with profound learning disabilities. He was blind, deaf, born with cerebral palsy, brain damage and quadriplegia. He had no language but could communicate by making different noises to express feelings, including happiness and pain. In October 2006, at Basildon Hospital, Kyle died from asphyxiation after his head became wedged in the metal frame of his hospital bed. Read the evidence presented to the Inquest Jury at Chelmsford in July 2009 In groups, highlight the key issues that led to the death of Kyle Flack Record these issues on flipchart paper Decide which of these issues you think could NOT happen in Lincolnshire, and say why Which of these issues do you think COULD happen in Lincolnshire and identify safeguarding processes that could be introduced

7. The Coroner’s Verdict • Inadequate risk assessments and reassessment of Kyle • The level of supervision had been inadequate for Kyle’s needs • There had been poor record keeping on behalf of the Trust • Ineffective cascading of information which failed to support staff at grassroots level • There had been insufficient training on the proper use of cot sides and bumpers • There had been a failure to easily access the previous incident report form • The cause of death was contributed to by neglect

8. Mrs Flack’s View…. • “Kyle had very complex needs, yet he was left for long periods of time on his own and unable to communicate. When loved ones go into hospital you trust staff to do their job; part of that is to keep them safe. This did not happen.” • “Although the nurses had a duty of care, the standards were so poor: there was poor written documentation, little verbal communication between the staff and our family, a lack of training of staff in learning disabilities, poor leadership and a lack of common sense.” • “The verdict today is a clear message to Basildon Hospital and will hopefully make the staff think and learn lessons”. • “But for us it comes at the expense of our darling son’s life. Our son died alone in a horrible situation which could have been avoided just by simple actions from the staff”

9. Let Kyle’s family have the last word...... “Despite the challenges Kyle faced, he led a happy and fulfilled life. Our family miss a much loved person who, for all his disabilities, had an infectious laugh, a unique personality and a charisma that drew people to him. He loved the wind on his face, loved being pushed over cobblestones and laughed from the moment he woke to the moment he went to sleep. Our heartache will remain for ever.”