Dying for things to change

What is the extent of the inequalities that people with learning disabilities face in primary healthcare settings? Claire Bates, a quality analyst at support provider Choice Support, investigates:

It has been more than six years since Mencap published its 2007 report Death by Indifference, which highlighted the shocking deaths of six people with learning disabilities in NHS care, but have the lessons been learnt from this? Choice Support’s recent health survey suggests not.

It identified that in 2013 pockets of disability discrimination and a lack of understanding surrounding people with learning disabilities still exist within the NHS. This poses a real risk to the health and lives of people with learning disabilities.

Mencap’s report stated that the six individuals died as a result of ignorance and indifference towards individuals with learning disabilities within the healthcare system. This failing was demonstrated in various damaging and degrading ways; for example, treatment for people with learning disabilities was more likely to be delayed or withheld because individuals did not co-operate and were therefore considered unable to consent. This emphasised how some healthcare professionals lacked a clear understanding of the law surrounding capacity and consent to treatment, combined with a lack of specialist knowledge and training around people with learning disabilities.

Some people suffered from diagnostic overshadowing where professionals wrongly believed that the presenting problem was a feature of someone’s learning disability, rather than illness.

In addition, professionals were accused of ignoring those who knew patients well such as family members. Despite families’ insistence that something was wrong, symptoms of pain and distress were ignored by professionals, which either delayed assessments and referrals to specialists or did not result in a referral at all, resulting in unnecessary suffering and eventually death.

Mencap’s report argued that health professionals had, on occasion, relied inappropriately on their estimates of a person’s quality of life and used this as a reason to not pursue treatment.

More recently, the Confidential Inquiry into Premature Deaths of People with Learning Disabilities from April 2010 to March 2013 examined the factors leading up to the deaths of 247 people with a learning disability and concluded that they continued to experience poor outcomes compared to the general population in relation to healthcare and 37% of deaths were avoidable.

Following this, Choice Support surveyed its staff to gather information on the experiences of supporting a person with a learning disability who had an unplanned stay in hospital. The findings suggest that while some people received high quality care this was not universal or consistent within and across NHS trusts. Some individuals’ experiences revealed similar issues relating to disability discrimination and indifference to those highlighted in Mencap’s report, but thankfully without such tragic consequences.

Many Choice Support staff felt people with a learning disability they supported only received a high quality of care due to their presence and the guidance they gave to NHS staff. Examples of negative experiences demonstrated how people’s basic human needs were not met. In one case, a person was treated with antibiotics but as they were unconscious they were not given any fluids or food for five days.

A lack of understanding and training surrounding the needs of people with learning disabilities was evident in some stories; for example, in one hospital NHS staff were unable to cope with a person’s behaviour and as a result they were discharged too early, which led to a poor outcome for that individual.

There were also instances where NHS staff demonstrated a lack of basic knowledge; one Choice Support staff member had to explain how to work with a person with dysphagia – where someone has difficulty swallowing – and how seizures can present differently in some individuals.

In addition, people were not always treated with respect; for example, some professionals addressed the supporting member of staff rather than the patient and didn’t thoroughly explain their treatment. This suggested that the hospital staff did not consider the person as able to understand their treatment, based on a presumption.

Thankfully none of these issues resulted in a death. However, they imply a lack of understanding from some NHS staff regarding how they can work positively with people with learning disabilities and their families and staff.

Support is fundamental
Choice Support staff considered the support they gave to a person in hospital as fundamental to ensuring a positive outcome. They believed they had the specialist knowledge to work with individuals and that their needs were too complex to be met solely by hospital staff who did not know them.

As one Choice Support staff member said: “We have to give support to people in hospital because of their communication needs, feeding needs, personal care requirements, due to the unfamiliar environment and to ensure continuous delivery of care, which hospital staff failed to provide because they are not as experienced working with people with learning disabilities.”

Not all feedback was negative; some staff reported encountering empathetic nurses and positive outcomes increased when hospital staff listened to the person, or those who knew them well. One Choice Support staff member reported that contacting the learning disability lead for the hospital was a positive experience. Their role is to be more proactive when a patient with a learning disability attends the hospital, ensuring the department is aware they may require additional support. It was unknown if this service is available in all NHS trusts and how well it is signposted for patients and their families or staff.

Improvements still required
Evidence from the Confidential Inquiry and Choice Support’s anecdotal evidence demonstrate that improvements are still required to correctly support the needs of people with learning disabilities in hospitals.

NHS staff may require more training around learning disabilities, but what fundamentally needs to change is how people are treated by some professionals and this requires no specialist training or resources. Death by Indifference presented the real human stories behind the statistics, demonstrating how people were left to die in agony by healthcare professionals. They were afforded little dignity and died as a result of discrimination where professionals were unable to see past their disability and recognise their suffering. Due to this they died prematurely of possibly preventable conditions.

If the moral test of a society is how it treats its most vulnerable members, what does this say about our society? The treatment and discrimination of people with learning disabilities within the healthcare system by some professionals suggests that they are not even considered part of our society, demonstrated by their being denied the same rights as other citizens such as access to specialists and adequate pain relief.

All people should be valued, treated with respect, listened to and involved where possible in decisions regarding their treatment. Their pain and concerns should be taken seriously and investigated promptly. If individuals can’t verbally communicate then staff should listen to those who know them well. These changes are external to support provider organisations, but what can they do to encourage a positive outcome for people who require admission to hospital? Choice Support encourages staff to support individuals to complain regarding poor care within hospitals. The organisation also has a number of processes that staff follow to ensure the best support possible while in hospital.

With increasing pressure on hospital staff and financial cutbacks having an impact some people have not, unfortunately, been supported by hospital staff as well as they might have been. But efforts are being made to improve the support provided to people with learning disabilities in hospitals, for example, the Royal Collage of Nursing updated its guidance Meeting the Health Needs of People with Learning Disabilities (2013) to include issues referenced in Mencap’s report such as diagnostic overshadowing and issues related to mental capacity post the Mental Capacity Act (2005).

The Confidential Inquiry team also ran a series of events in autumn 2013 to discuss the findings and how to take forward the recommendations. A Learning Disability Confidential Inquiry Improvement Group has been set up providing a forum for people to share their experiences of, and have discussions about, taking forward the recommendations.

From the response to the Confidential Inquiry it’s clear that the NHS has been made aware of the issues and recommendations have been set to address them. Only time will tell how effective they have been. In the meantime, people with learning disabilities are dying for things to change.

References
Improving Health and Lives Learning Disabilities Observatory (2012) Confidential Inquiry into Premature Death of People with Learning Disabilities. Bristol: IHAL.
Mencap (2007) Death by Indifference. Following up on the Treat Me Right! report. London: Mencap.
Royal College of Nursing (2013) Meeting the Health Needs of People with Learning Disabilities: RCN guidance for nursing staff. London: RCN.

This article first appeared in the March/April 2014 issue of Learning Disability Today. For more information about the magazine, including how to subscribe, visit www.learningdisabilitytoday.co.uk/learning-disability-today/  

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