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

  1. For further information about the  campaign or to arrange an interview, journalists please contact the PHSO press  office on 0300 061 4272 or press@ombudsman.org.uk
  2. 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.
  3. 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.
  4. 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
  5. Details of four  case studies of complaints investigated by the PHSO relating to people with a  learning disability:
Miss C

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

Complaint: upheld

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

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.  

Complaint: upheld

Miss  A

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


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