Last reviewed 9 October 2013

The Department of Health created a stir in June 2013 with new revelations of substantial variations in early death rates between various parts of the country. Jef Smith reports.

It has long been recognised that social deprivation plays a significant part in the risk of early death. The North of England taken as a whole, for example, compares poorly with generally more well-off southern areas; statisticians would not have expected anything different.

What had not been previously graphically demonstrated was that the variations occur within regions when areas of similar socioeconomic status are set beside each other. Thus Rotherham, a seriously deprived northern industrial city, has an excellent record for reducing premature deaths, while Central Bedfordshire, a local authority in the middle of a relatively affluent southern county, has one of the worst rates of premature mortality among areas of its type.

In the full analysis of these figures, published in a document with the blunt title Longer Lives, experts expressed the view that a person’s likelihood of dying prematurely from one of the major killers such as heart disease or cancer depends heavily on obesity, alcohol consumption and smoking. Jeremy Hunt, Secretary of State for Health expressed outrage at the “shocking” findings. Corrective action will rest with the recently created Health and Wellbeing Boards.

However, a similar degree of official anger (at the very least) should have been generated by the findings of another Department of Health document a few months earlier, in March this year. This was a report on a two-year analysis of mortality statistics for a specific group, published as Confidential Inquiry into Premature Deaths of People with Learning Disabilities.

It analysed 247 deaths of people with learning disabilities alongside those of 58 non-disabled people as a comparator group. Prominent among the figures it highlighted was that 37% of the disabled individuals in the sample studied could potentially have survived if their care had been better.

The issue of poor care

In some ways the issues behind the confidential inquiry’s findings relating specifically to learning disability should be easier to tackle than the socioeconomic factors dealt with in Longer Lives.

Public behaviours such as excessive alcohol consumption, cigarette smoking and inappropriate diets leading to overweight are notoriously difficult to approach, making straightforward poor care look like a relatively easy target. Health and care workers are a defined group for whom standards can be set, additional training devised and sanctions brought into play for inadequate practice. However, the history of the treatment of people with learning disability by the health services reveals a much more intractable problem.

It has been apparent for some years that people with learning disabilities generally have a shorter life expectancy than others and they experience a higher risk of dying prematurely. The Department of Health’s 2001 White Paper Valuing People called for a confidential inquiry of the sort that has now reported, but it was the 2004 report from the charity Mencap, Treat Me Right, which brought the issue to prominence.

Taking up the matter, the Disability Rights Commission produced a report in 2006 on the inequalities in physical health experienced by people with learning disabilities, and a year later Mencap returned to the campaign with the publication of Death by Indifference, which explored in detail the fate of six people who had died, apparently unnecessarily.

This in turn led to two initiatives, a detailed investigation into Mencap’s six cases by the Health Service Ombudsman and an independent inquiry led by Sir Jonathan Michael. The Michael report, Healthcare for All, found that “there is evidence of a significant level of avoidable suffering and a high likelihood that there are deaths occurring which could be avoided”. It again called for a confidential inquiry, a demand eventually accepted by Department of Health, along with Michael’s other recommendations, in the updated strategy for learning disability services, Valuing People Now, published in 2009.

Results of the confidential inquiry

The confidential inquiry, which has now been reported, was based at the University of Bristol. It covered only five Primary Care Trust areas in Somerset and Gloucestershire, but there is every reason to believe that the local factors it identified are present throughout the health service. The evidence of each of the deaths considered involved a study of core data, a review of the case notes, individual interviews, a panel meeting of those involved in the care and an external scrutiny by an overview panel.

There is a great deal of detail in the report covering issues such as demographic factors, health and care needs, housing, communication, and physical and sensory impairment, along with the causes of death. Perhaps predictably, this supporting information shows the complexity of the medical histories of most people with learning disabilities.

For example, a substantially higher proportion than in the general population were underweight, a fifth had seven or more medical conditions, almost all had one or more long-term conditions such as epilepsy, cardiovascular disease or dementia, and a similarly high percentage were on some sort of medication. Despite all this, 12% of people on GP learning disability registers had never had an annual health check.

The confidential inquiry identified a number of factors that contributed to the premature deaths identified by the current and previous investigations.

For a start, there were delays or problems with the care pathway, that is, the steps through which individuals pass in obtaining and receiving services. Forty per cent of the sample whose illness was reported to a doctor had experienced problems in having their condition diagnosed or treated. In a quarter of cases, the concerns of people caring for them were not taken seriously.

For many individuals, reasonable adjustments — the term used for steps to make services easily accessible — were not made. There was often a lack of co-ordination in the care provided, especially for people with multiple conditions. In over half of the cases there was no advocate, even where it was acknowledged that it was difficult for professionals to access the relevant knowledge about the patient.

The Mental Capacity Act 2006, which makes specific provision for people thought to lack the capacity to take decisions unaided, was widely ignored, with legally required assessments of capacity not recorded or simply not carried out. Similarly, guidelines about resuscitation decisions were often not followed, in both emergency and non-emergency situations.

Poor record keeping and record sharing, familiar defects of care and treatment systems, was widespread; examples quoted include a lack of information on potentially life or death factors such as nutrition, bowel movements and seizures. End-of-life care plans were characteristically inadequately kept or not prepared at all.

Perhaps most worrying of all was a general lack of proactive care, the predicting or planning for potential problems, so that serious situations when they did arise presented as crises. No account was often taken, for example, of a patient’s fear of medical professionals, a well-known factor, especially by care workers, which is common in people with learning disabilities. There were limited postural interventions despite the obvious need. Planning for hospital discharges, for transitional care or for continuing care for progressive long-term conditions, particularly dementia, was almost always poor.

Implementation of the recommendations

The confidential inquiry’s recommendations, if implemented, would go a long way to rectifying these wrongs.

The authors propose a uniform death-reporting system linked to a comprehensive learning disability register, the regular collection of information on learning disability deaths, and the detailed investigation both of some randomly selected deaths and of specific deaths where concerns had been raised, and an annual report summarising key trends and issues. All of this would be overseen by a newly-created organisation, the National Learning Disability Mortality Review Body.

It might be thought that these proposals have a rather bureaucratic emphasis, but this in fairness reflects the confidential inquiry’s terms of reference. There is certainly a need for improvement in the quality of staff responses and systems to people with learning disabilities within the health service, but questions should still be posed as to how related professionals, including those working in domiciliary care, could have helped to save some of these lost lives. What should now be done to improve their input to this serious problem?

The inquiry provides some clues towards possible answers. Mencap has commented that it is “worrying that despite previous investigations and reports many professionals seem unaware of approaches that adapt services to meet the needs of people with a learning disability” and it is right to point out the need for strengthened training for a range of workers including those delivering domiciliary care.

Care staff often have detailed experience of the conditions from which their clients are suffering, but they do not always take seriously enough their responsibility to share that knowledge and expertise with fellow professionals, particularly when someone goes to the GP or is admitted to hospital.

This duty goes beyond that of efficiently delivering information to health service workers, the call the inquiry makes for better record keeping and sharing. It relates also to the inquiry’s finding that in a large number of cases the concerns of “paid carers” were not taken sufficiently seriously, a two-edged complaint against both the health service for not listening and the carers for not pressing their worries hard enough.

Social care workers and their managers are too often intimidated by doctors and nurses, and where they have knowledge they could share they should certainly speak up. Given the scarcity of advocates, a care worker is often the only person who can effectively represent the interests of someone otherwise powerless. Timidity in such situations threatens lives.