People with Learning Disabilities: Health Inequalities

Lord Touhig Excerpts

Thursday 18th July 2013 Lords Chamber

[Lord Touhig]

My Lords, I refer the House to my interests as a vice-president of the National Autistic Society. I congratulate the noble Baroness, Lady Hollins, on securing this timely debate, coming, as she said, so soon after the publication of the Government’s response to the Confidential Inquiry into Premature Deaths of People with Learning Disabilities and just two days after the publication of this report from the Health Service Ombudsman, which I want to speak about.

I welcome this debate because it affords us the opportunity to debate the wider subject of health inequalities affecting people with a learning disability. The confidential inquiry is a crucial piece of work and shows that 37% of deaths could potentially have been avoided if good-quality healthcare had been provided. It is a terrible indictment of our care support system for the most vulnerable group of our fellow citizens, who are being let down. They and their carers often find it hard to express themselves in a way that might help prevent the tragic happenings that the inquiry has revealed. Like many noble Lords, I am aware that the support groups and those who work with people with learning disabilities have significant concerns about the Government’s response to the inquiry, a point well made by the noble Baroness, Lady Hollins. They feel that it is simply not strong and purposeful enough to really drive the change that we all wish to see.

On a wider point, a report from the Health Service Ombudsman, laid before Parliament on Tuesday this week following an investigation into a complaint against a GP practice, makes some pretty awful reading and should act as a wake-up call. It reveals how a GP service let down a young man with severe learning disabilities and it starkly draws into focus the attitudes that pervade in the system.

The young man is just 23. He has severe learning disabilities and behavioural problems, and he has epilepsy. He has historically been prescribed a series of medicines in liquid or dissolvable form because he becomes very distressed if he has to take tablets. One of the medicines was midazolam, used in emergencies if his epileptic seizures lasted beyond three minutes. In April 2011 his mother asked their GP for a repeat prescription in liquid form to help her son’s epilepsy. The GP refused her request because it was too expensive. He would only prescribe her son suppositories or tablets in future.

The mother advised the GP that her son had been prescribed only liquid medicine from a very young age, as his learning disabilities caused him to become very distressed if he had to swallow tablets. Despite this, the GP said he would no longer prescribe any of the young man's medicines in liquid form for cost reasons and would prescribe only tablets in future. The doctor told the mother to find a GP,

“‘who has bigger budgets’ and who would ‘be happy to prescribe the medications’”.

The mother was clear that the decision not to prescribe her son suitable medication put him at risk, including of death. However, when she subsequently complained to the GP practice about the doctor's decision, the response was far from understanding and helpful. She got a letter informing her that there had been a “total breakdown” in the doctor-patient relationship and advising her to find a new GP within 21 days as she and her son were to be removed from the practice’s list.

I can only ask noble Lords to imagine the significant distress that followed. The General Medical Council guidance is clear: doctors must ensure that prescribing of medicine is appropriate and responsible and in the patient’s best interests. The guidance also states that doctors should, when appropriate,

“establish the patient's priorities, preferences and concerns”,

and

“discuss other treatment options with the patient”.

After investigating the case, the ombudsman found that the GP had not given the young man the medication he needed on the grounds of cost, and had ignored disability discrimination law in the process. The ombudsman was clear in the report that the doctor,

“did not act in line with the Mental Capacity Act, GMC guidance and established good practice.”

The report found that the doctor,

“did not consider his responsibilities under the Mental Capacity Act in reaching his decision”,

about the young man's medication. He did not assess the young man’s,

“capacity to make a decision about his own treatments or medications. Nor did he take any of the required actions that could have led him to reach a ‘best interests’ decision”,

on the young man's medication.

The case shows a lack of understanding of reasonable adjustments and disability rights. Public bodies are required to comply with the Equality Act 2010, which includes the duty to make reasonable adjustments. They should also have regard to the various statutory codes of practice that have been published to assist in the interpretation of the legislation. The ombudsman’s report brings into sharp focus a specific case and uncovers the treatment that people with a learning disability and their families can face within the health service. The 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.”

Unless the Government take strong action in this area, cases such as these will continue to occur. That is why I strongly support establishing a national mortality review body, which would allow for the collection of mortality data and, importantly, for investigations of specific cases, a point made by the noble Baroness, Lady Hollins. Critically, it would provide the opportunity to improve the understanding of the causes of premature deaths and enable the National Health Service to improve care for people with a learning disability.

The ombudsman’s report highlights a terrible wrong committed against a vulnerable young person. I hope that this Parliament and this Government will act to stop these awful and discriminatory cases occurring in future.