Not one NHS trust has been found to show good practice across all aspects of identifying, reviewing and investigating deaths and ensuring that learning is implemented, and the review calls for urgent change to improve the care patients receive.
Mencap has campaigned for almost a decade to improve health outcomes for people with a learning disability. 1,200 people with a learning disability die avoidably in the NHS each year.
We respond to the report’s findings below.
Jan Tregelles, Chief Executive of Mencap, and Vivien Cooper, Chief Executive of The Challenging Behaviour Foundation, commented:
This report recognises radical change is needed to transform a culture across NHS Trusts where learning from mistakes that led to deaths is not currently a priority. Over 1,200 people with a learning disability die avoidably in the NHS every year. It is deeply concerning that many of the NHS Trusts visited did not understand the specific support needed by people with a learning disability.
Losing a member of your family and finding out their death was avoidable is devastating and traumatic. Families need to be treated with respect, compassion and need direct and transparent involvement in investigations as to why their loved one died.
The recommendations in this report need to be urgently taken forward. This requires a change of culture, attitude and processes to end a healthcare system that is currently failing people with a learning disability and their families.
Monica Clifford, sister of Anne Clifford who died aged 53:
In 2010 my sister Anne - who had Down’s syndrome and severe learning disabilities and did not use verbal communication - was admitted to hospital with a chest infection and breathing difficulties. Anne was 53 and before admission to hospital had been happily living in a care home.
When she was admitted she was placed in the high dependency unit as she was having difficulty breathing. She was diagnosed with pneumonia and fed through a nasogastric tube. Anne died 2 months after being admitted to hospital following an operation to insert a feeding tube into her stomach.
Prior to her death, we had a number of concerns about the care Anne was receiving in hospital, which we made the hospital aware of. Following her death, the onus was on me to make a complaint, which was then investigated by the hospital. The hospital decided the terms of the investigation which did not cover all aspects of Anne’s treatment and care. When this wasn’t satisfactory I then approached the Ombudsman.
It was determined that Anne had lost a considerable amount of weight in hospital. The Ombudsman upheld my complaint and found there had been ‘service failure’ in the management of Anne’s nutrition, the Trust’s assessment of Anne’s needs, and communication with her family and carers.
It took 4 years to have my concerns answered and for failings to be recognised.
It is now 6 years on from Anne’s death and I am still in communication with the hospital. The hospital produced action plans to address the failings and I want to be assured that the learning is consistent and fully embedded in hospital practice. There must be a cultural change to ensure a change in attitude and practice towards people with a learning disability.
For further information, please contact the Mencap press office on 020 7696 5414 or firstname.lastname@example.org or for out of hours 07770 656 659.
There are 1.4 million people with a learning disability in the UK. Mencap works to support people with a learning disability, their families and carers by fighting to change laws, improve services and access to education, employment and leisure facilities.
Mencap supports thousands of people with a learning disability to live their lives the way they want.
For advice and information about learning disability and Mencap services in your area, contact Mencap Direct on 0808 808 1111 (9am-5pm, Monday-Friday) or email email@example.com.
What is a learning disability?
A learning disability is a reduced intellectual ability which can cause problems with everyday tasks – for example shopping and cooking, or travelling to new places – which affects someone for their whole life.
People with a learning disability can take longer to learn new things and may need support to develop new skills, understand difficult information and engage with other people. The level of support someone needs is different with every individual. For example, someone with a severe learning disability might need much more support with daily tasks than someone with a mild learning disability.
Learning disability is not a mental illness or a learning difficulty. Very often the term ‘learning difficulty’ is wrongly used interchangeably with ‘learning disability’
About The Challenging Behaviour Foundation
The Challenging Behaviour Foundation (CBF) is an independent charity providing information, support and workshops around challenging behaviour associated with severe learning disabilities to families and professionals. The CBF leads the ‘Challenging Behaviour National Strategy Group’ which seeks to influence policy and practice nationally and has developed the Challenging Behaviour Charter.
The Challenging Behaviour Foundation was founded in 1997 by Vivien Cooper, parent of a son with severe learning disabilities who displays behaviour described as challenging. Today the Challenging Behaviour Foundation is in regular contact with over 5000 families and professionals across the UK. There are an estimated 30,000 individuals in England with severe learning disabilities and behaviour described as challenging.