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| Learning-disabled people are dying because they receive less good care | Learning-disabled people are dying because they receive less good care |
| (about 20 hours later) | |
| By the time Robin Kitt Callender died, she had endured eight weeks of intermittent vomiting and diarrhoea, and her weight had fallen to five stone. In the four months before she collapsed at her Essex care home, the 53-year-old had visited her GP six times and A&E twice, but her inflammatory bowel disease remained undiagnosed. | By the time Robin Kitt Callender died, she had endured eight weeks of intermittent vomiting and diarrhoea, and her weight had fallen to five stone. In the four months before she collapsed at her Essex care home, the 53-year-old had visited her GP six times and A&E twice, but her inflammatory bowel disease remained undiagnosed. |
| Callender, who was severely autistic and partially sighted, with communication difficulties, died on 23 May 2012, less than 24 hours after finally being admitted to hospital. | Callender, who was severely autistic and partially sighted, with communication difficulties, died on 23 May 2012, less than 24 hours after finally being admitted to hospital. |
| An inquest last week concluded that she died from natural causes contributed to by neglect, with failings by her GP and hospital staff and missed opportunities to save her. Care home staff took her to the doctor, but failed to tell her sister (who usually accompanied her to medical appointments) of the severe symptoms until the day before she died. | An inquest last week concluded that she died from natural causes contributed to by neglect, with failings by her GP and hospital staff and missed opportunities to save her. Care home staff took her to the doctor, but failed to tell her sister (who usually accompanied her to medical appointments) of the severe symptoms until the day before she died. |
| There have been continuing – but achingly slow – moves to transfer people from institutions into community living | There have been continuing – but achingly slow – moves to transfer people from institutions into community living |
| Anxious, in pain and unable to communicate, Callender suffered needlessly. She was a victim of institutional disablism; her death highlights the unequal status of people with learning disabilities, their below-par care and the lack of communication between care providers and families that compounds this inequality. | Anxious, in pain and unable to communicate, Callender suffered needlessly. She was a victim of institutional disablism; her death highlights the unequal status of people with learning disabilities, their below-par care and the lack of communication between care providers and families that compounds this inequality. |
| There are 1,200 avoidable deaths of learning-disabled people in the NHS every year, according to Mencap’s research into “death by indifference”. A government-commissioned confidential inquiry into the premature deaths of people with a learning disability found that, on average, people die 16 years sooner than in the general population, with many deaths avoidable. | There are 1,200 avoidable deaths of learning-disabled people in the NHS every year, according to Mencap’s research into “death by indifference”. A government-commissioned confidential inquiry into the premature deaths of people with a learning disability found that, on average, people die 16 years sooner than in the general population, with many deaths avoidable. |
| Among the families seeking answers and lobbying for change is that of Connor Sparrowhawk. Two years ago this month, the 18-year-old, who had a learning disability and epilepsy, was admitted to a specialist NHS inpatient unit in Oxford and drowned in the bath less than four months later. His preventable death led to the Justice for LB campaign and an inquest is due this summer. | Among the families seeking answers and lobbying for change is that of Connor Sparrowhawk. Two years ago this month, the 18-year-old, who had a learning disability and epilepsy, was admitted to a specialist NHS inpatient unit in Oxford and drowned in the bath less than four months later. His preventable death led to the Justice for LB campaign and an inquest is due this summer. |
| Related: ‘We must stop learning disabled people being dumped in waste bins of life’ | Related: ‘We must stop learning disabled people being dumped in waste bins of life’ |
| The circumstances in the cases of Sparrowhawk and Callender are very different, but the principle is the same: people with a learning disability are dying because they do not receive the same quality of care as other people. | The circumstances in the cases of Sparrowhawk and Callender are very different, but the principle is the same: people with a learning disability are dying because they do not receive the same quality of care as other people. |
| What’s happening to change this? Though well-intentioned rhetoric and reports have demanded improvements in the treatment and status of vulnerable people, actual progress is lacking. | What’s happening to change this? Though well-intentioned rhetoric and reports have demanded improvements in the treatment and status of vulnerable people, actual progress is lacking. |
| Since BBC’s Panorama exposed the abuse of people at the private Winterbourne View inpatient unit in Gloucestershire four years ago, there have been continuing – but achingly slow – moves to transfer people from institutions into community living. Other glimmers of hope include NHS England’s recent report Winterbourne View – Time to Change, the public commitment by NHS England’s chief executive, Simon Stevens, to close long-stay hospitals, and care minister Norman Lamb’s recent green paper on disability rights influenced by Justice for LB. | Since BBC’s Panorama exposed the abuse of people at the private Winterbourne View inpatient unit in Gloucestershire four years ago, there have been continuing – but achingly slow – moves to transfer people from institutions into community living. Other glimmers of hope include NHS England’s recent report Winterbourne View – Time to Change, the public commitment by NHS England’s chief executive, Simon Stevens, to close long-stay hospitals, and care minister Norman Lamb’s recent green paper on disability rights influenced by Justice for LB. |
| However, with an election looming (in which one million people with learning disabilities are eligible to vote), there is no guarantee that the new government (regardless of the outcome) would actually turn the proposals into law. No wonder grieving families like Sparrowhawk’s and Callender’s are forced to become campaigners. Robin’s sister Karen Callender Caplan’s wish is for better training for care staff and “Robin’s Law”, making it a crime for a care home to fail to inform families if someone who is in their care, and who lacks capacity, falls ill and dies. “Society’s indifference is staggering,” she says of her sister’s life and death. | |
| Until people with a learning disability are regarded as equal citizens, the lives of “thousands of vulnerable and unprotected Robins out there”, as her sister says, remain at risk. | Until people with a learning disability are regarded as equal citizens, the lives of “thousands of vulnerable and unprotected Robins out there”, as her sister says, remain at risk. |
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