People with Learning Disabilities: Health Inequalities

Lord Rix Excerpts

Thursday 18th July 2013 Lords Chamber

[Lord Rix]

My Lords, as president of Mencap, I welcome the opportunity to speak in this important debate, having rushed from the other Lord’s in St John’s Wood to support my noble friend Lady Hollins in her battle to achieve health equalities for learning-disabled people.

As someone who has worked in the world of learning disability for more than 60 years, I am of course aware of the persistent health inequalities that exist. The figures from the confidential inquiry are shocking and the report makes sober reading. That over a third of those investigated died due to poor healthcare is nothing short of an outrage and should be front-page news. The fact that, on average, men with a learning disability die 13 years earlier and women with a learning disability die 20 years earlier than the general population should be reported alongside the horrific facts, figures and stories from the Mid Staffordshire scandal. Instead they appeared in only a handful of articles, well tucked away. It is a further disappointment that no Oral Statement was made, either when the inquiry was published in March or last week when the Government published their response. That is why this debate is so important.

As many of your Lordships know, I chair the All-Party Group on Learning Disability together with the right honourable Tom Clarke MP. For many years we have brought in people with a learning disability, their families, advocates and professionals, to create a dialogue with MPs and Peers. On Monday I chaired a well attended meeting on this very subject where we heard from the confidential inquiry team and the learning disability public health observatory together with people with a learning disability, family members, carers and the Minister, Norman Lamb.

The inquiry team is to be commended on an excellent, robust piece of work, exposing the stark health inequalities that people with a learning disability face and providing the Government with 18 excellent recommendations on which to move forward. As my noble friend Lady Hollins stated, it seems that the key recommendation, that a national mortality review body be set up to collate data and investigate and report on deaths, is critical in order to keep momentum going, as well as to start the kind of culture change that we must see within the NHS. It is therefore deeply disappointing that the Government have shied away from this critical recommendation, putting off any sort of decision until March 2014. Like my noble friend, I wonder how many more people will have died unnecessarily by that date.

The most powerful account given at the meeting was that of Christine, a mother who tragically lost her daughter Tina in 2009. Tina lived at home with her parents and her sister. She had learning disabilities, epilepsy, Russell-Silver syndrome—a form of dwarfism—and severe scoliosis of the spine. Tina had generally been physically well but developed a cough and a high temperature. Her parents called the doctor and Tina received a home visit from her GP during which she was prescribed antibiotics and paracetamol. Her condition deteriorated, however, and her parents rang the surgery to request a second home visit. This was refused, as was their first request to the out-of-hours service.

It was not until a second call to the out-of-hours service—which resulted in a home visit and a diagnosis of aspiration pneumonia—that Tina was referred to Basildon hospital. Once in hospital she was diagnosed as suffering from pneumonia and a chest infection. The hospital did not give her the treatment she needed or even meet her basic care needs. She suffered several seizures in hospital and went for four days without food. She died on 30 January 2009.

Tina’s death has had the most profound impact on Christine, of course, and her family. At the meeting she said:

“Our daughter was a human being and we protected her and cared for her all through her life until she became ill. We argued with the Doctors from day one; firstly the GP and then the hospital. They saw a child laying there with a disability and decided her life wasn’t worth saving”.

The Parliamentary and Health Service Ombudsman’s investigation of the case found failures and delays in diagnosing Tina’s condition, a failure to act in line with the Mental Capacity Act 2005, failures in the communication of Tina’s condition to her parents, a failure to implement Tina’s transitional care plan and a failure in meeting Tina’s rights as a disabled person.

Christine is rightly concerned about Vikki, her other daughter, who also has a learning disability. She described at the meeting how she and her family were fearful every time Vikki became ill and when she had either to visit the doctor or go to hospital.

We owe it to Christine and her family, as well as to countless others, to stop these health inequalities leading to death by indifference—the apt title of a report by the Royal Mencap Society.