Viewpoint: Patient best interest - not cost - should be overriding concern in learning disabilities treatment

We recently published a report about a complaint from the mother of young man who had multiple health conditions, writes Dame Julie Mellor, Parliamentary and Health Service Ombudsman.

Dame Julie: 'Doctors must ensure that prescribing is appropriate and in the patient’s best interests.'
Dame Julie: 'Doctors must ensure that prescribing is appropriate and in the patient’s best interests.'

He had severe learning disabilities and behavioural problems, he also had epilepsy.

In April 2011, the young man’s mother, asked her GP practice for a repeat prescription of midazolam in liquid form to help with her son’s epilepsy. The GP refused her request because it was too expensive and said that he would only prescribe her son suppositories or tablets in future. She advised the GP that her son had only been prescribed liquid medicines from a very young age, as his learning disabilities caused him to become very distressed if he had to swallow tablets.

Finally, when she questioned the GP’s position the GP said: ‘Find a GP with bigger budgets who would be happy to prescribe the medications.’

After our investigation, we found service failure by the practice, specifically that it failed to consider its obligations under disability discrimination law. The practice also didn’t follow accepted medical guidelines in relation to the care and treatment of the young man and, ultimately, put cost before the welfare of the patient.

The decision not to prescribe suitable medication was one based on cost alone. That is totally unacceptable. Proper consideration of the patient’s best interests would have meant carrying on this young man’s usual prescription.

Recently, the report of the Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD), by the University of Bristol, found that men with learning disabilities died, on average, 13 years sooner than men in the general  population and women 20 years sooner. It also made a number of recommendations which are particularly relevant to this case - highlighted below.


  • People with learning disabilities should have equal access to the same

treatments and investigations as anyone else.


  • Regular training for health staff in the Mental Capacity Act should be provided, so that clear understandings of its principles are understood organisationally.


  • There should be an acknowledgment that treatment and investigations may need to be delivered differently to achieve the same outcome.


  • Annual audits of any requirements and adjustments that are provided for patients should be reviewed and any best practice be shared with similar organisations and agencies.


Furthermore, GMC guidance clearly sets out that, when prescribing medicines, doctors must ensure that the prescribing is appropriate and responsible and in the patient’s best interests.  It also states that doctors should, when appropriate, ‘establish the patient’s priorities, preferences and concerns’ and ‘discuss other treatment options with the patient".  Clearly, in this instance such guidance was ignored.

In this case the GP, who was the decision maker, also did not comply with the Mental Capacity Act in two fundamental ways.  The GP did not assess the young man’s capacity to make a decision about his own treatment or take the steps required to ensure that he had made a ‘best interests’ decision.

The publication of this case follows the DH recent response to the 2009 joint report, Six Lives, between my office and the Local Government Ombudsman. This report included several cases involving people with learning disabilities experiencing prolonged suffering and inappropriate care.

The DH’s response identified several areas of good progress made since 2010 which included improvements in listening to patients with learning disabilities and their families and also, the following of the Mental Capacity Act by healthcare staff.

But, as the case of this young man clearly shows, there is still plenty more to do. Such failures have consequences in terms of the health and in too many cases, the life expectancy of people with learning disabilities.

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