Health

A Person with profound learning disability and epilepsy

Introduction

The learning disability disorder is a neurological condition which impairs one or more than one basic psychological processes that are required for speaking, reading, writing, understanding languages and solving mathematical calculations. It is considered to be a broad term - an umbrella label that comprises a variety of conditions. Unfortunately, due to lack of awareness among the teachers, school authorities and parents, many children afflicted with this disorder are never identified and are generally classified as an incapable, failure and slow or behind. This particular disorder cannot be cured and therefore considered as a lifelong challenge. Individuals with this disorder fail repeatedly while performing a task which results in the development of poor self-esteem or confidence due to which they often stop trying and learning and ultimately get dropped out of the education system. As a result, these individuals who failed to gain proper education and also lack any support system are at a higher risk of becoming addicted to drugs or illicit substances, tobacco and alcohol. These individuals also get engaged with some illegal activities and are very much prone to teenage pregnancies. About 13 to 14 per cent of all the school children are suffering from learning disorders and they are labelled as “failures” by our society. But in reality, it is the education system that has failed in recognizing these children with special needs (Sawhney, et al, 2014; McDermott, et al, 2001).

Epilepsy is considered to be the first described brain disorder. The disease is associated with typical symptoms of seizures and it has contributed to various myths and superstitions through several ages. The word “epilepsy” is of Greek in origin and it denotes “attack”. The several functions of the brain such as feelings, observation, analysing and moving of body parts are all depended on the transmission of the electrical signals from one neuron to another and the message can get modified if required. Therefore our brain is constantly generating the electrical impulse in an organised way but in case of epileptic patients, the order gets disrupted due to the release of some neuron discharging signals inappropriately. It may result in the formation of a brief period of electrical storm generating out of neurons and the conditions are genetically instable as in most types of epilepsy (Gupta, et al, 2013; Lee, et al, 2015).

Risk Factors associated:

People with learning disabilities and epilepsy are considered to be the most defenceless group in the society. They often get ill treated and disregarded by any group of the society as they cannot express for themselves. These people also fail to recognize any risk due to lack of communication and they cannot take any decisions for themselves. They are more prone to any interpersonal violence such as physical assault. The caregivers may harm the individuals with learning disability to exercise control over their money. The caregivers may also develop certain abusive behaviour towards the individual. Children born from mothers addicted to illegal substance or exposed to negative spousal behaviour may develop such abnormalities (Moore, et al, 1998; Batavia, et al, 2001).

Meeting the specialised needs of the person with disability disorders with patient centred care approach:

The parents of the child with learning disability need to educate themselves with the effective treatment options for the condition so that they can advocate for their children at school and provide treatment to them. The teachers and the parents should pay attention to the child’s interest and passions. If they are encouraged in their field of passion and interest then this also help them to develop in their areas of difficulties. Individuals with learning disability suffer while expressing their feelings, to keep themselves calm and while decoding any non verbal cues from others. These factors make it difficult for them to adjust in the school classroom and to relate to their peers. But the parents and the teachers can make a huge effort in this situation by enhancing the development of the social and emotional skills which acts as markers for success for the children. These children are accompanied with academic challenges, faces isolation due to their behavioural problems, have low self confidence but the role of active parents and teachers is to build a strong support system for them which helps them to cope with their disabilities, can express themselves freely, can manage their frustrations and behaviour and can struggle with the challenges they face. The role of the educators is not just to focus on the academic achievements but also to teach them good emotional habits which will help them to grow in the future. Children suffering from learning disability can become extremely exhausting and due to this reasons their parent and educator may suffer from frustrated with the situation.

The patient centred care offers the best care for the people with learning disability. People who attains the healthcare services or under the guidance of health professionals should abide by the guidelines of the NHS constitution of England and the NICE guidelines. Moreover, the responsibilities of the care givers and local authorities are mentioned in the Care Act 2014. An informed decision has to be taken for the patient about the care and responsibilities with the health professionals and the social partners. If the patient is below the age of 16 years then the carers and the parents should be informed about the treatment and the care and support that has to be provided to these children. If the patient fully understands the treatment process and does not want to involve their families or care givers then only the patient consent should be obtained by following the guidelines of the Department of Health’s advice on consent. In case someone does not have the capacity to take any decisions then the code of practice that accompanies the Mental Capacity Act and the supplementary guidelines on the code of practice on deprivation of liberty safeguards have to be followed. NICE has also established guidelines on the good service user experience. Similarly the patient centred care for epilepsy involves the patient actively in their own treatment procedures with the close companionship of the health care professionals. An individual suffering from epilepsy goes through depression, anxiety, learning disabilities and the management becomes difficult due to the lack of knowledge and their vulnerability to their epilepsy related stigma. The situation demands the establishment of 1) epilepsy subspecialty medical care, 2) mental health services for patients associated with mental health disorders, 3) social service based on the community to contain most of the population. The emergence of Telehealth with the telemedicine associated with coordinated care service is an important part of the patient centred care approach (Brown, et al, 2016; Edwards, 2007).

It is observed that out of every 100 people with learning disability 22 of them also suffers from epilepsy. The chance of suffering from epilepsy increases with the severity of the learning disorder condition. The epileptic patients have complex health needs and it becomes more complex if associated with mental abnormalities. People with epilepsy may face increase chances of pre mature death if the seizures are not properly controlled. The risk for committing suicide among the patients of epilepsy is 5 times higher than the normal suicide rate. These patients require highly complicated care but face obstructions while offering quality care which increases the health related discrepancies. The Healthy People 2020 was organised with a set of objectives designed by the United States with an aim to improve the health of the population of the nation and the people with epilepsy with uncontrolled seizures should be offered with the accurate care. The people with epilepsy are educated about the self management of the conditions so that they can effectively manage the outcomes of the disease. The self management process is based on the interactive phenomenon where the patient can themselves evaluate their health status and can also execute a variety of behaviour to manage their medications, safety, seizures, emotional and physical discomfort and other factors related to their current health status. This kind of management is suitable for the older adults with epilepsy. Adult patients with epilepsy experiencing the first seizure should be informed that the chances of recurrent seizures are 21–45% higher for the next period of 2-3 years. After the stabilization of the patient the physician should investigate in details about the neurological condition of the patient (Miller, 2014).

Several guidelines and policies to safeguard the people with disabilities:

The Mental Capacity Act developed in the year 2005 is the law developed to safeguard the vulnerable people over the age of 16 years concerning the decision making. The act states that any adult have the capacity to take their own decisions in any situation disregard of their disabilities. The Human Right Act 1988 also states that the public authorities can be subjected to prosecution if they fail in their responsibility to protect individuals with learning disability from abuse and neglect. The Disability Act, 2006 offers a stronger whole government or whole community support to meet the specialised needs of the people with disability. The NHS takes the responsibilities for tackling the morbidity and early death of the people with these conditions. The Government’s Mandate to NHS England takes the responsibility to lower the health gap between people with learning disabilities, mental health problems and autism and the normal population and also offer them the support to lead a healthy and independent life. The guidelines formulated by NICE deals with the aspect of investigation, management and management of epilepsy.

Research based evidence suggest that difficulties are found in recognizing the specialised needs of the people with disabilities. They face obstructions within the health service such as during communication, the rigid procedures or the unavailability of facilities and the absence of interpersonal skills among the mainstream health professionals to provide the quality care for these patients. As the life expectancy of the people with learning disabilities are shorter with respect to the normal population, reasonable adjustments should be made to help them to access the health care services. Several interventions have been developed to improve the level of access such as developing the communication facilities, a prompt card to provide support to the general practitioners, the development of several health check programmes and the establishment of walk in clinics. The development of multidisciplinary or multidimensional team helps in the wide-ranging diagnosis and treatment to offer clinical service to patient with mild or severe intellectual disability and also providing the additional care and support to people with complex health care needs (Davis, et al, 2009; Rioux, et al, 2003).

Physical Environment:

The appropriate and responsive environment should be provided to these people to meet their demands. Spacious environment should be provided to them so that they freely move around, the environment should be modified to meet their sensory needs, the use of the assistive technology should be enhanced, an environment which will promote communication and also can exercise control over them. They should be provided with the mobility equipment during hoisting, changing, bathing. They should have access to all the basic facilities where they live. Each person should be motivated to sustain a warm contact with friends, family and with the communities. In hospital settings they should be provided with the best practice setting which includes: staff of the hospital should demonstrate respectful behaviour towards them by noticing the person not their disability, sensitive communication should be maintained depending on the needs of the patient, dignified and empathetic care should be offered, attitude should not be biased or judgemental (Doukas, et al, 2018; Elaine, et al, 2003).

Role of nurses:

The nurses who are working in the mental health and learning disability services need to provide high quality individualised patient care service. They should apply the following principles while providing patient-centred care: respect, choice, control and participation. The nurses should have the capability to identify the failures in the report; they should actively listen to the patients and help them and their families to participate in the therapeutic activities. The professional expertise of the learning disability liaison nurses (LDLN) gets enhanced if they have the following features which include: a) excellent professional expertise and comprehensiveness about the individual needs of patients with learning disorder disability and their families; b) they should have the power to decide about the care pathways of different patients and should have detailed perspective along with the right to entry to most of the clinical areas within the critical trust settings; c) highly available within the hospital sector; d) they should have tough support from the senior managers of the hospital. The complex needs of the learning disability patients and the attention that has to be provided to them demands the support of extremely skilled nurses to ensure the prevention of any potential harm or even death in a certain number of cases. However, their efficiency often gets inhibited due to the insufficient support provided by the senior management and the restriction of the risk-taking aspect of their professional role. Certain similarities were obtained with the study findings of Brown et al, 2015, regarding the elements observed in the professional role of LDLN are education, clinical patient care and development of the practice and the improvement of the organisation strategically. The involvement of the LDLN with every element mentioned differs by a long way between different trusts (Hunt, et al, 2001; Foster, 2005; Castles, et al, 2012; McConkey, et al, 2010).

In the case of patients suffering from epileptic seizures, symptomatic features can be scary. At that time the role of the nurse is staying beside the patient and assuring him that the condition will pass away. It is very much essential to consider the immediate environment, i.e., whether the patient will fall down or not, any kind of hazardous objects are removed from the vicinity to prevent any form of injury immediately after a simple partial seizure as it acts as a warning signal of a stronger seizure. The management of complex partial seizures is considered to be a difficult one. Certain measures that have to be taken after simple partial seizures as the floor management process:

• The patient should be thoroughly assessed for the presence of any injury especially about limb displacement which points out about the presence of any fracture.
• The behaviour of the patients may change if they feel that they are being controlled. So nurses should take measures regarding their safety.
• The nurses should communicate with the patient in a peaceful and supportive tone.

The nurse should be prepared to walk along with the patient if the patient suddenly starts walking just after getting up from the floor and before the onset of automatisms. If in case the patient removes their garments, the nurse should immediately cover him/her with a blanket to reduce the embarrassment of the patient after recovery (Lee, et al, 2015; Gupta, et al, 2013).

Conclusion:

This assignment highlights about the special health care needs of the people with learning disability disorder and epilepsy. The ways to meet the specialised needs of the patient with a patient centred approach has also been included in details. The risk factors for the people with the disabilities and the specialised environment that should be provided to them to help them leading a normal life have been discussed. The roles of the specialised nurses to manage the conditions of the patient have been explained in details along with the several policies that have been developed to safeguard the people with disabilities and mental health problems.

References:

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