People with Learning Disabilities

Lord Ribeiro Excerpts

Thursday 12th June 2014 Lords Chamber

[Lord Ribeiro (Con)]

My Lords, I thank the noble Baroness, Lady Hollins, for initiating this debate, which challenges us to achieve the exhortation in the gracious Speech for Her Majesty’s Government to continue work to build a fairer society. I believe the Government are trying to do so but, while the concept of a fair society is apparent in our everyday lives through the experiences of those we meet, it is less clear in relation to mental health, intellectual disability—or learning disability, as I will refer to it—and those with physical health needs.

Part of the problem lies in the education and training of doctors, who ultimately are the leaders who set the example which junior doctors follow. Your Lordships may wonder why, as a retired surgeon, I would have anything to say about learning disabilities. First, I must declare an interest as one of my family members has Down’s syndrome, a condition associated with learning disabilities and premature mortality compared to the national norm.

In the late 1970s and 1980s when I was appointed a consultant surgeon, mental hospitals which previously had been no more than asylums were closing all over the country. I worked as a consultant surgeon to Basildon and Orsett hospitals and part of my contract required me to visit South Ockendon hospital, which was a mental institution. There I undertook consultations and occasional operations—some of them quite major. On looking through the hospital records of one of the patients I was amazed to find that the cause of admission in 1950 was “imbecile”. Many patients in those days found themselves in institutions as no one could cope with their condition or behaviour.

The care that these patients received in the five years I attended was superb. You could have eaten a meal off the out-patient parquet floor, which was cleaned and polished to perfection. Despite the subsequent closure of the hospital through alleged incidents of ill treatment of patients, I never witnessed any treatment other than kind consideration and attention to the individual patients under its care. We are all horrified by the stories at Winterbourne View and Mid Staffordshire but within these institutions, like South Ockendon, there was also compassionate care.

My point in making these observations is that subsequently, when the hospital closed and the patients were managed in the community, I had no recourse to seeing them in their natural habitat, supported by caring nursing staff, who knew them and could care for their needs. Indeed, the nurses would often interpret for those unable to speak intelligently.

In the Confidential Inquiry into Premature Deaths of People with Learning Disabilities report, of the 247 patients who died, 30% had limited verbal communication and 22% did not communicate verbally at all. Patients would often arrive in my out-patients’ clinic with no detailed information about their learning disabilities, which led inevitably to delays and searching for records to make sure one had all the relevant information. How easy it would be in this computer age to give every one of those patients a memory stick on which their medical records were stored. I believe that the Government are making efforts to achieve such personalised medical records. Unlike the failed IT projects of the past decade, we could make a case for targeting just this one vulnerable group, and using that as a project to see whether it can actually work.

Public Health England is producing guidance for people with learning disabilities which help those who are old enough to be enrolled in the various screening programmes we have. As a colorectal surgeon, one of the most important screens is that for bowel cancer. I can assure noble Lords that, for the initiated, understanding how to use and perform the screens can be quite difficult. The conclusion of the review is that despite the lessons learnt from previous reports and recommendations, the professions are either unaware of or do not include in their normal practice adaptions to services that would assist those with learning disabilities. Identifying patients with learning disabilities who have acute conditions can be difficult and can lead to delays in diagnosis and treatment. A good carer or parent might be able to interpret symptoms but, as the report identifies, delay or problems in diagnosis or treatment are the weakest links in the pathway of care.

There are also problems around identifying needs and providing appropriate care in response to changing needs. More than one-third had difficulty communicating their pain, and for those with acute abdomens it could prove difficult for admitting surgeons to make a diagnosis. In our current surgical practice there is an overreliance on scans, whether they be ultrasound, CT or MRI scans, whereas a good history is usually a shortcut to a working diagnosis. Those skills need to be recognised and utilised. Learning disabilities may also be a contributing factor to premature death, to which the noble Baroness, Lady Hollins, referred. We need better systems for flagging up patients with learning disabilities who attend outpatients or are admitted. Our medical students, junior doctors and all health professionals need to be made aware of the needs of people with these disabilities.

We also need to apply the parity of esteem that we have talked about on previous occasions by treating everyone, whether they present with physical conditions, mental conditions or learning disabilities, exactly the same. The Government can assist in this, and I am pleased to hear that Health Education England is making progress in this respect. It should also take note of the Greenaway report that resulted from the Shape of Training review. In the striving effort to make doctors more generalist in their approach rather than specialist, we must ensure that we take into account the problems related to learning disabilities and mental health in general. The education of health professionals is key to this, both for those in the service and for those yet to come, so that a fairer society that includes people with no physical conditions can be realised.