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
- 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 said:
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, prompted by Mencap's Death by Indifference report, 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.
Norman Lamb, Care and Support Minister 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.
For further information about the campaign or to arrange an interview please contact the PHSO press office on 0300 061 4272 or firstname.lastname@example.org or the Mencap press office on 020 7696 5414 or email@example.com.
Notes to editors
Mencap 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, highlighted in Mencap’s Death by Indifference report (2007).