Health Ombudsman urges action to prevent ‘avoidable’ deaths of people with a learning disability
01 May 2014
Too many people with a learning disability are not getting access to the right care and treatment at the right time, leading to avoidable deaths in some cases, the Parliamentary and Health Service Ombudsman (PHSO) warns today.
One of the biggest barriers to achieving good care for people with a learning disability was an overall lack of understanding of their needs, according to recent case investigations by the Ombudsman Service. These cases showed alarming gaps in care provided for people with a learning disability, which meant that in some cases, vital opportunities to prevent their deaths were missed.
These included cases where the patient's condition was not diagnosed quickly enough, where the proper checks to assess their initial condition were not made, and in one case where a patient was deemed too 'difficult to assess' meaning their symptoms went unnoticed until it was too late.
Research from the charity Mencap has found that 75 per cent of GPs have received no training to help them to treat people with a learning disability. Mencap's research also shows that there are approximately 900,000 with a learning disability, but only 200,000 are registered with their GPs as having a learning disability. Being registered as having a learning disability with a GP means that patient will benefit from an annual health check, which can often uncover treatable conditions.
Julie Mellor, Parliamentary and Health Service Ombudsman said:
'It is really tragic that the lives of people with a learning disability are in some cases being cut short because they aren't getting the right care and treatment at the right time.
'We know from our casework the terrible effects when things go wrong, where the needs of vulnerable people and their families are ignored or not thought about. A Government study in 2013 found that out of 238 deaths of people with a learning disability 42 per cent could have been avoided, and there are more cases where these patients should simply get better care throughout their lifetime.
'That's why we are launching the Complain for Change campaign to tell people how they can complain, so people with a learning disability and their families can make problems known and get them put right. We want those working in health and care to make sure the needs of patients are being met.
Whilst important steps have been taken to improve care and meet the needs of vulnerable people, our casework over the past five years shows that more needs to be done – just one avoidable death is one too many.'
The Complain for Change campaign has provided leaflets in Mencap centres across London since March, and from today we will be advertising in hundreds of GP surgeries across London and promoting the campaign nationally with patient advocacy groups, Healthwatch and the local NHS. This is the first time that simple and accessible information has been provided for people with a learning disability in GP surgeries on how to make a complaint. PHSO has also created a short animated video for people with a learning disability which is being shown through advocacy groups and can be found at www.complainforchange.org.
Evidence has shown that people with a learning disability are more likely to die earlier than those in the general population. Research by the University of Bristol commissioned by the Department of Health in 2013 found that:
- on average men with a learning disability died 13 years earlier than men in the general population;
- on average women with a learning disability died 20 years earlier than women in the general population, and,
- in many cases the reason for premature deaths of people with a learning disability was that there was a failure by service providers to meet their needs.
The campaign seeks to drive forward change in health services by demonstrating how making a complaint can make a real difference and sometimes prevent avoidable deaths of people with a learning disability. Research has shown that people with a learning disability are one of the groups least likely to raise a complaint with the PHSO and they tend to have a low awareness of our services. The campaign is part of the PHSO's work to make it easier for people know who to complain to.
Jan Tregelles, Chief executive of learning disability charity Mencap, says:
'A scandal of avoidable deaths on the scale of Mid-Staffordshire takes place every single year for children and adults with a learning disability in the NHS. This tragic waste of life, often caused by poor care and delays in diagnosis and treatment, highlights the scale of discrimination faced by disabled patients in the health service.
'Since 2007, we have worked with over 100 families who have lost loved ones with a learning disability, supporting them to seek justice through a complaints process which families have found to be slow, bureaucratic and defensive.
'People with a learning disability and their families have waited too long for change, which is why we are glad to be working with the Parliamentary and Health Service Ombudsman to give people the tools they need to speak up and make their concerns known before it is too late.'
Following the launch of the PHSO's Six Lives report in 2009, the Government acknowledged that a lot more needed to be done to ensure that people with a learning disability were treated with the compassion and dignity that is their right, and that they receive the same quality of care and treatment as anyone else. As a result, they addressed some of the key issues facing people with a learning disability when they access health and care services.
Supporting the Complain for Change campaign, Care and Support Minister, Norman Lamb, said:
'This campaign is a positive step in helping to address inequalities in care.
'People with learning disabilities deserve the very best care from the NHS and to be treated with dignity and respect and as equal citizens - anything less is unacceptable.
'We continue to work with people with learning disabilities, their family and carers, charities, and NHS England to respond to people's needs and provide better care.'
The PHSO investigates complaints from individuals that have been treated unfairly or have received poor service from Government departments and other public organisations and the NHS in England.
More information about the campaign can be found at http://www.complainforchange.org
Notes to editors
- For further information about the campaign or to arrange an interview, journalists please contact the PHSO press office on 0300 061 4272 or firstname.lastname@example.org
- The charity Mencap has found that 75 per cent of GPs have received no training to help them to treat people with a learning disability. Mencap's research also shows that there are approximately 900,000 with a learning disability, but only 200,000 are registered with their GPs as having a learning disability. Mencap also identified the following factors as being barriers towards good care in a hospital setting:
- Patients not being identified as having a learning disability;
- Staff having little understanding about learning disabilities;
- Failure to recognise that an individual with a learning disability is unwell;
- Failure to make a correct diagnosis;
- No clear pathway for evidence-based treatment;
- Lack of joint working from different care providers across different disease pathways;
- Not enough involvement allowed from carers;
- No specified person with a responsibility for the safe and reasonably adjusted health care of people with a learning disability;
- Problems with aftercare or follow-up care.
- The confidential inquiry into the premature deaths of people with a learning disability (CIPOLD) study was published in March 2013. The three-year study by the University of Bristol (funded by the Department of Health) found that those with a learning disability are more likely to have a premature death compared with individuals in the general population. As a result of the findings, a series of recommendations aimed at improving the quality of healthcare that people with a learning disability receive were made.
- The Six Lives report by the PHSO was published in 2009 and looked at the PHSO's investigation into six deaths of people with a learning disability
- Details of four case studies of complaints investigated by the PHSO relating to people with a learning disability:
Miss C had severe learning disabilities and needed 24-hour care. She spent most of her time at a community Home run by the Trust, but also went on home visits to her family. On two occasions Miss C's parents told staff at the Home, when returning their daughter, that her urine was malodorous. In these circumstances staff should have tested her urine as soon as practicable and contacted her GP if an infection was detected. They did not do this. On the first occasion, the Home took no action. The second time they delayed testing her urine and contacting her GP. Miss C died the next day from bronchopneumonia.
We found that staff at the Home did not regularly review the care planned for, and the care delivered to, Miss C. They did not create a care plan to address her malodorous urine, and they did not communicate effectively with each other or value Mr and Mrs C's expertise and contribution to their daughter's care. The Trust's subsequent investigation into Miss C's death led to a disciplinary investigation into the actions of the staff, a registered nurse and a carer. The registered nurse was disciplined and following a hearing dismissed by the Trust. The Trust also referred her to the Nursing and Midwifery Council because it felt that her actions had not been those expected of a qualified nurse, and was subsequently struck off
Case in 2012
A 19 year old man with a learning disability was admitted to A&E with mobility problems, poor speech and incontinence. He was later diagnosed with brain tumours and died in a hospice less than two months later.
PHSO found several failings in the man's care – he was not adequately assessed in A&E, and his history concerning psychological and social factors, were not accounted for. Instead, the doctor in A&E decided that the man had behavioural problems and contacted a social worker. At some point the man was on the floor in A&E, and unable to stand. He was then seen by the second doctor, who admitted the man and arranged appropriate investigations (including a CT scan, a lumbar puncture, and a brain biopsy). When the lumbar puncture was first attempted, nothing was recorded in the man's clinical records about the procedure. Communications with the man's parents were lacking; in the absence of evidence to the contrary, we concluded that doctors had not regularly spoken with them for about a week.
The man was terminally ill. He was transferred to a hospice in a non-emergency patient transport ambulance, secured on a stretcher and accompanied by his mother. There was already another patient in the ambulance, which then called at another hospital to pick up another patient, before taking the man to the hospice. This was unacceptable. He should have should have been transferred in an ambulance where he was the only patient, giving him privacy and a direct journey to the hospice. This lack of consideration indicated that nurses did not make his care their first concern and treat him as an individual.
Complaint: partly upheld
Mr B had physical and learning disabilities. He had been hospitalised many times with chest infections thought to be linked to aspiration. Mr B was admitted to hospital with a two-day history of vomiting. A doctor suspected that he had aspirated again. He was given more oxygen, antibiotics and fluids. Early the following morning a locum consultant saw Mr B. He wrote in the notes that, in his view, Mr B was dying and that resuscitation would be futile. His mother Mrs B asked for a second opinion, but Mr B died before a second consultant arrived. Mrs B complained that her son had been discriminated against because of his severe physical and learning disabilities, and doctors and nurses had ignored her.
We found many failings in the nursing care, medical care and treatment given to Mr B. Staff in A&E had recognised Mr B's learning disabilities and involved Mrs B. But once Mr B was moved to the Acute Medical Unit, his rights under disability discrimination law were not properly considered. The Trust's own Serious Untoward Incident investigation concluded that Mr B's nursing care had not been delivered with the appropriate level of sensitivity for a patient with complex needs, and that some staff had shown a lack of insight into Mr B's needs as a vulnerable person. We were also struck by a statement from the locum consultant which suggested that his rationale for a Do Not Attempt Resuscitation Order had partly been based on Mr B's physical and learning disabilities.
Miss A had Down's syndrome and lived in a residential care home. Her GP referred her to A&E because she was not using her right arm as much as usual and dragging her right leg. The doctor who saw Miss A noted she was a 'difficult patient to assess' and they could perform only a limited examination. The doctor thought Miss A might have had a stroke, but concluded that problems with her right arm might be physical, not neurological. Miss A was discharged back to the care home, but returned the next day unable to walk properly. Again, the doctor found her difficult to assess because she was agitated and was refusing to be approached.
It was decided that Miss A would be more likely to let her own GP examine her in the familiar surroundings of the care home, so she was again discharged back to the care home. Miss A's condition deteriorated and she was readmitted to hospital. A brain scan (under sedation) showed that she had had a stroke. Because she could not swallow she was eventually fed through a PEG tube. She then developed pneumonia and died shortly after.
Miss A found being in the hospital upsetting. This made her agitated and uncooperative and made it harder for doctors to assess her condition. Nevertheless they should have made sure she had been adequately assessed and arranged the further investigations and treatment she needed. Miss A's symptoms suggested she might have had a stroke, but doctors did not use arrange a brain scan to establish if had had a stroke. She should also have been referred to a stroke specialist.
Miss A's ability to swallow was appropriately assessed. However, when she would not tolerate the nasogastric tube that had been recommended, doctors took longer than they should have done to arrange an alternative method of feeding her. Doctors did not consider a PEG tube until she had gone without food for more than a week. And a lack of urgency meant that it was not until almost three weeks after her admission that the tube was actually inserted; three weeks during which Miss A was not being fed. Last, we found that doctors gave Miss A frequent doses of diazepam without considering if this was the best way to manage her behaviour. Doctors should have arranged for Miss A to be reviewed by an expert in the care of people with a learning disability or a general psychiatrist, but they did not do this.
The doctors who saw Miss A in A&E did not feel that Miss A's care was any different because of her learning disability. But their own comments indicated a lack of understanding of how they should have acted to ensure that the care and treatment they delivered was in line with the law on disability. The consultant who supervised Miss A's care in the hospital told us that he did not seek advice from a learning disability specialist, because Miss A's needs were very similar to a typical stroke patient who has acquired a brain injury due to their stroke. But the consultant was wrong to regard Miss A as a typical stroke patient. In conclusion, the Trust's staff did not act with regard for disability discrimination law or Miss A's rights as a person with a disability.
Complaint: partly upheld
Contact: Marina Soteriou
Phone: 0300 061 4996