People with learning disabilities: doctors give their view of Death by Indifference

Mencap believes the underlying cause of why so many people with learning disabilities die in hospital is the widespread  ignorance and indifference towards them and their families in the NHS.

Mencap’s Death by Indifference report cited six cases in which people with learning disabilities died while in the care of the NHS. And its assertion of institutional discrimination prompted the Department of Health to launch an independent inquiry into the deaths earlier this year. Jonathan Michael, former chief executive of Guy’s and St Thomas’ NHS Foundation Trust was appointed to chair the inquiry. In May, next year it will make recommendations on how systems and practice can be improved.

As part of its campaign to promote opportunities for people with learning disabilities, Community Care wrote an article for sister titles Doctor and Hospital Doctor aimed at improving medical practice on the issue. Jointly, they are read by 80,000 medical practitioners.

The article urges doctors to avoid making assumptions about a person with learning disabilities’ quality of life and to fully understand the law on consent. It also suggests doctors need to involve parents and carers.

The following are reactions from three frontline doctors to the charge that the NHS sees people with learning disabilities as a lower priority…


As the parent of a boy with autism and severe learning disabilities, I have often found it difficult to work out whether his challenging behaviours are a response to some change of routine or emotional upset or indicate that he is suffering from some sort of organic illness.

As a doctor, I have great sympathy for other health professionals who have tried on various occasions to identify the cause of his distress, not least because I am only too aware of the sort of pressures they work under in busy surgeries and hospitals. As a GP, I have also some experience of the difficulties of managing the health problems of people with learning disabilities, notably in grappling with the challenges of diabetes, a not uncommon factor in premature death.

Mencap’s Death by Indifference report presents six “shocking and tragic” cases in which the deaths of people with learning disabilities are attributed to professional “ignorance and indifference” resulting from “institutional discrimination” in the NHS.

I have encountered good practice and bad practice, but this account of systematic abuse and ill-treatment of people with learning disabilities bears no relation to my experience.

Mencap’s model – the 1999 Macpherson inquiry into the death of Stephen Lawrence which identified “institutional racism” within the police force – is of dubious validity in relation to ethnic minorities. It is of even less value in relation to people with learning disabilities, who are treated as a homogenous category when one of the key challenges is their diversity.

The cases in Death By Indifference have been selected to legitimise the authors’ prejudices: it would be easy to make similar allegations of poor practice in relation to the elderly or the homeless, scousers or geordies. Just as the Macpherson inquiry has proved popular with politicians and senior management, the concept of “institutional discrimination” appeals to health service chiefs and the burgeoning disability bureaucracy. It allows those at the top to evade responsibility while shifting blame to front-line workers, and provides a vehicle for enhancing managerial authority.

Mencap’s key recommendations are to provide more training for GPs and annual health checks for people with learning disabilities.

Though training will provide salaries for disability activists and consultants, it will do nothing to improve primary care for people with disabilities unless GPs get more time to deal with their problems. There is no evidence that annual health checks are of any value to anybody – they have recently been abandoned for the over-75s who found them intrusive, moralising and, in the absence of resources to meet the unmet needs uncovered, useless.


Death by Indifference is fairly damning of the care doctors give to people with learning disabilities. Do I believe that a particular treatment would be denied a patient just because they have learning disabilities? Absolutely not.

Apart from a handful of dinosaurs, most doctors currently practising in the NHS will treat all patients equally regardless of age, sex, race or disability. Patients with learning disabilities do present GPs with particular challenges though. Most of us only have 10-minute appointments. Ten minutes is fine for a fully competent patient with a sore throat, but often not long enough to deal with a patient with learning disabilities whose problems are likely to be complex. We rely on information given to us by the patient’s carer or care worker, which is often inadequate.

In the modern NHS, for a variety of reasons, it is not uncommon that a patient will see a different GP every time. For patients with learning disabilities this makes it vital the carer  is fully briefed on the patient’s past history and current problem.

It is frequently the case that the carer attending with the patient is not the one who booked the appointment and has not received a proper hand over, making the GP’s job much harder. In this type of situation it is possible the treatment received is sub-optimal.

It is no more acceptable for a patient with severe learning disabilities to attend the GP without a well-informed carer than it  would be for a young child to come to the doctor without a parent.

It is also important that carers, parents and relatives have thought in advance about what treatment would and would not be in the best interests of a patient with learning disabilities. If the patient does not have the capacity to make decisions about their own care it is important that the risk and benefits of any intervention are thought through very carefully. For example, an upper gastrointestinal endoscopy, a fairly straightforward procedure in a fully competent adult, could be a terrifying experience for a patient with severe learning disabilities.

In this type of situation it may be decided that conservative treatment is better in the first instance. This would not be discriminating against the patient because they have learning disabilities, it would need to be a carefully thought through decision made using the ethical principles as a framework and remembering that firstly “to do no harm” is the overriding principle we should be guided by.

I can believe patients with learning disabilities don’t always receive the best possible care, but to improve things we all need to try harder, not just doctors.


I tend to agree with most of Death by Indifference’s fundamental conclusions. Certainly, patients with learning disabilities present an enormous challenge to those of us involved in their secondary care.

However, I reject the implication that specialists are ill-informed, insensitive or stupid when it comes to these issues.

Resolving communication difficulties is key to improving the situation. I used to teach communication skills to medical students, and among our scenarios not one involved a patient with learning disabilities. It is not just communication with the patients, moreover, there is a lack of multidisciplinary care meetings, particularly in the acute medical case.

Doctors do not view these patients as less of a priority, or are “less suspicious” about their symptomatology. I, for one, would be more suspicious, as a patient with a learning disability is less likely to be manipulative, or indulging in psychological overlay.

Aside from genetic syndromes with known physical complications, there is no reason why a person with learning disabilities should be physically different from any one else.

I do not see doctors making assumptions about quality of life, or taking make or break decisions without consulting the carers.

The fear of legal recriminations from the family almost precludes this. However, I would agree that there is a lack of knowledge on consent, sadly fostered by strict policies produced by administrators. Doctors will drag their heels on taking life-saving action, if carers or families cannot be found to give consent in a timely fashion.

I do believe that carers could contribute more to communication with a patient with learning disabilities. While this is not an issue with an outpatient consultation, where carers would routinely be available, it is definitely a problem with an in-patient stay.

The NHS could vastly improve the picture by providing 24-hour facilities, so that carers can be on hand when needed, similar to paediatric care.

I accept the accusation that patients with learning disabilities are suffering within the NHS, but it not because we view them as inferior to our other patients.


John Dixon, vice president, Association of Directors of Adults Social Services

The Doctor/Hospital Doctor article has helped focus attention on an often neglected and seldom aired area in which people with learning disabilities can “fall below the radar” of important public agencies.

But first a word of caution. Overall, NHS professionals are meticulously concerned to ensure that their expertise is shared right across the spectrum of the patients they are responsible for: “thoughtlessness” is sometimes just another word for “unsensitised” or “untrained”. That people with learning disabilities have difficulties accessing and getting the best from the health
services is well-known, and well-attested.

But the solutions should always be more than simply providing training for medical professionals in the needs and concerns of people with learning disabilities. That training must be sustained and revisited on a regular, say triennial basis in order for it to have its full value both in cost-efficiency terms and value to patient.

The nub is to create a medical environment in which the social model of disability can be unambiguously applied. This isn’t just a matter of training or, however important, equality impact assessments. It needs a fundamental change of attitude (which both can help foster), a sympathetic relationship between the local adult social care department and counterparts in the PCTs and acute trusts, as well as top-flight, sensitive advocacy.

The strategic development of personalisation in our own social care services, putting people more in control of their care budgets, and their
needs at the centre of our decision-making processes, rather than at one end of a gift relationship between professional and patient is fundamental to creating the right environment. It should be reflected in the way choice concerning medical care is centred more firmly on the patient within the NHS – although recent reports suggest that this shift is moving more slowly than is desirable.

It is likely that local authorities in future are going to play a much more significant role in the care of people with learning disabilities. If so, this
will be an even greater spur to them and their NHS colleagues to improve those vital outcomes for them which we all desire.

➔ If you have views on tackling the problem e-mail

This article appeared in the 11 October issue under the headline “Does doctor know best”

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