Discussing Death by Indifference Mencap article

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In 2007 the Royal Mencap Society (Mencap) published its Death by Indifference article. This report highlighted their belief that people with learning disabilities receive worse healthcare than people without learning disabilities (LD). They proceed to highlight six cases of alleged discrimination of people with LD that lead to the deaths of these people. Mencap believe that these deaths could have been prevented. This essay identifies three problematic scenarios that can occur for people with learning disabilities in an acute hospital setting. Further, this essay will discuss how these three scenarios can be prevented or minimised and will provide references to highlight and support this. In its conclusion, this essay will consider the points raised to summarise its findings.

The first issue for discussion is the lack of awareness of the health needs of a patient with LD's. This essay highlights this scenario, as a lack of understanding of that person's care and condition could lead to the patient's care being compromised and subsequently endanger the patient's life. Glasby A.M (2002:1392) comments that training and support enables healthcare staff to develop their skills and confidence, enabling them to work effectively with people with LD. This suggests that their understanding of the patients LD can reduce the risks posed by their medical condition. The National Patient Safety Agency (NPSA), claim that illness is often misdiagnosed or undiagnosed because many acute care staff have minimum or no knowledge of the healthcare needs of the LD patient. NPSA (2004 cited by Kent A 2008). This awareness can help install the correct levels of care and can reduce staff possibly overestimating and assuming the patient's ability to comprehend and collaborate in an acute care setting. The risk of which can result in death to the patient with LD's. Melville et al (2005 cited by Gibson T 2006:595) found that following a short training programme, 81.4% of practice nurses taking part felt more enabled to meet the needs of people with LD's and 66.6% claimed that they had altered their practice and understanding as a result of the knowledge they had gained.

Leading on from this, the second scenario this essay will highlight is that of communication. This subject was chosen because poor communication can miss vital information which could lead to delays or misdiagnosis of a patient's treatment. One of the points raised in the Mencap 2007 report is that the Doctor did not communicate effectively with the parents due to the patient being unable to communicate. Mencap believe this was one of the contributing factors towards the patient's death. Weaver D (2010: 60) suggests barriers to communication are physical and psychological. The patient's disability could affect their speech which is a physical barrier or that psychologically they could be introvert resulting in passively accepting the opinions of others. These barriers would suggest that ideally a healthcare worker in an acute environment should recognise the communication issue and be able to communicate effectively with the patient and those closest to them. It could be argued that healthcare staff could be unaware of the actions and signs displayed by LD's , these indications could be due to distress or not being able to convey their feelings of pain. Mencap 2007 state that patients with a LD may find it difficult to communicate their symptoms and to appreciate the information they are being told. Subsequently it could be suggested that poor communication, can lead to many problems thus possible delays or misdiagnosis. An example could be a patient accepting treatment not fully aware of what is happening to them or the implications, not being able to convey pain or their likes and dislikes. Suggested steps to minimise communication problems would be to discuss with family members, friends, GP or carers on the best method of communication, examples being pictures, objects or sign language, discuss who should be involved. Mencap (2004:26) comment that it is not always easy to identify people with learning disabilities and simple measure such as identifying on the patients health records that they have LD can raise awareness of that patient's specific wants and needs. Patience and simple language should be utilised to explain relevant information.

A third scenario that may be encountered when providing care for people with LD's is the patient's capacity to understand consent and subsequently to provide that consent to treatment. Keenan P, McIntosh P (2000 cited by Read S 2005:15), indicate that many people with LD's are passive recipients of their care, this suggests that due to their lack of ability to make decisions in an acute setting their passivity could lead to their needs being overshadowed. This essay highlights this because if a misunderstanding takes place regarding consent from a patient or a patient passively agrees, then treatment and the patient can be affected, this can result in the death of that patient. In the Mencap 2007 report, there was a delay in treatment because the doctors claimed the patient would not co-operate and therefore could not consent to it. This suggests a misunderstanding of the patients consent and can mistake it for refusal. An example being a patient pulling out a peg feed because they are anxious or in pain. This does not automatically mean they are not consenting to treatment and that they would prefer to pass away. It can simply mean that they do not understand the consequences of consenting or not consenting to treatment. Many professionals do not know or understand the law surrounding the capacity and consent to treatment by a patient with LD's, Mencap (2007). The law in Scotland assumes that a patient has the ability to provide consent, unless it can be proven that they are incapable, Scottish Government (2008:4). This suggests that if a patient has LD's it does not mean that they are unable to make decisions themselves. It can also be argued that because that patient may act unwisely it does not mean that their capacity is not there. General guidelines of this act should be that the patient benefits from a decision and be the least restrictive, the wishes of the patient should be taken into account and discussion with relevant people like family, carer, named person or guardian. The Act protects people who may not have the capacity to make decisions, importantly though it is also there to support and promote their involvement in decision making and to ensure their autonomy and safety.

Therefore in conclusion the penalties of not being able to identify the health needs and effectively determine consent to treatment with a patient with learning disabilities in an acute setting are high and possibly lethal. The writer witnessed this when a patient with LD's was brought into their ward and during their assessment it was highlighted to the writer by the staff nurse, that people with a LD are more likely to have dysphagia, which is a swallowing difficulty. According to Tingle J (2004:438) this can lead to a respiratory tract infections, a main cause of early death for people with LD. This was a good example of a staff nurse knowing the health issues surrounding a patient with a LD. Powrie E (2003 cited by Gibson T 2006:594) highlights that 70% of practise nurses surveyed were unsure if the health needs of people with a LD were being met. This would suggest that training and support help understand learning disabilities better thus helping to prevent death. This should promote that maintaining of good education and training in keeping skill levels up to date. There are many mechanisms in place to help healthcare workers communicate and increase their awareness in not only legal policy but to also increase their awareness of LD's. Good support systems and training can encourage good communication skills, and also help staff understand the importance of listening to the patient, their families and carers. Healthcare workers have a duty of care toward their patients in not only being an advocate in their optimum health but to ensure that they have access and understanding to the care that they are entitled too. The Nursing and Midwifery Council (NMC) state that people should be involved in their care that nurses have a duty to safeguard the patient with learning disabilities, NMC (2007).