National Ombudsmen
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Patient best interest – not cost alone – should be the overriding concern in care and treatment of people with learning disabilities, Ombudsman says

A report published by the Health Service Ombudsman yesterday (16 July 2013) found that a London GP practice did not give Mr H, a young man with severe learning disabilities, behavioural problems and epilepsy, the medication he needed on the grounds of cost and ignored disability discrimination law in the process.  

In April 2011, Mr H’s mother, Ms B asked her GP practice for a repeat prescription of midazolam in liquid form to help 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.  Ms B advised the GP her son had only been prescribed liquid medicine from a very young age, as his learning disabilities caused him to become very distressed if he had to swallow tablets. 

Furthermore, when Ms B questioned the GP’s decision, he told her to “find a GP with bigger budgets who would be happy to prescribe the medications”.

 The investigation found service failure by the practice – and specifically that they failed to consider their obligations under disability discrimination law, and didn’t follow accepted medical guidelines.  GMC guidance 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’.

 The Health Service Ombudsman Julie Mellor said: 

“This is yet another case where someone with learning disabilities has been failed.  When there are failures in the care and treatment of people with learning disabilities, there are consequences in terms of their health and in too many cases, their life expectancy. 

In this instance, the decision not to prescribe suitable medication was one based on cost alone – and that can’t be right. Proper consideration of the patient’s best interests would have meant carrying on this young man’s usual prescription.   This case is particularly worrying because the preference and concerns of this young man’s mother about his medication were ignored, as was the Mental Capacity Act.  

One size does not fit all and doctors should carefully consider the impact on the patient when making decisions about care and treatment. The recommendations made by the confidential inquiry into premature deaths of people with learning disabilities are particularly relevant to this case. Regular training of health staff on the Mental Capacity Act, as recommended by the inquiry, would be a great place to start.  And we are pleased to see the Department of Health in their response to this inquiry taking this issue seriously and recommending that advice on the Mental Capacity Act be easily available 24 hours a day.”

 The publication of this case follows the Department of Health response last week (Friday 12 July 2013) to a 2009 Health Service Ombudsman and Local Government Ombudsman report Six Lives: the provision of public services to people with learning disabilities. The Six Lives report included cases illustrating significant and distressing failures in service across both health and social care, leading to situations in which people with learning disabilities experienced prolonged suffering and inappropriate care.  

Commenting on the Department of Health’s response to Six Lives, Julie Mellor added: 

“The Department of Health’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 in these areas and we will continue to publish cases such as this one so public services can learn from the poor treatment of people with learning disabilities.” 

 

See PDF of press release here and a copy of the report here.

Note to editors: 

  1. The Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) published earlier this year included the following recommendations: 
  • Reasonable adjustments required by, and provided to, individuals, to be audited annually and examples of best practice to be shared across agencies and organisations. 
  • In this case, Mr H, had a number of health problems which included epilepsy as well as learning disabilities – and we agree with the CIPOLD report that these multiple conditions should have been considered when the GP was considering what prescription to give. Also, one of the recommendations made by the Department of Health’s response to the CIPOLD inquiry was that NICE clinical guidelines should take into account multi-morbidity where appropriate.
  • People with learning disabilities to have access to the same investigations and treatments as anyone else, but acknowledging and accommodating that they may need to be delivered differently to achieve the same outcome. 
  • Training on the Mental Capacity Act to be mandatory for staff involved in the delivery of health or social care.

 2. The Health Service Ombudsman was set up by Parliament to help both individuals and the general public. We are not part of the NHS.  The Ombudsman’s role is to investigate complaints that individuals have been treated unfairly or have received poor service from the NHS or NHS funded services. The service is free to use and open to everyone.  

3. If someone is unhappy about the service they have received from the NHS in England they should first make their complaint to the department or organisation in question and give them the chance to respond.  If they’re not happy with how their complaint is dealt with, they should contact the Ombudsman – call 0345 015 4033 or email phso.enquiries@ombudsman.org.uk. 

4. For media enquiries, contact the Ombudsman’s Press Office on 0300 061 4996/4272 or email press@ombudsman.org.uk.

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