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Learning Disabilities: Families and Carers Support

Info: 3815 words (15 pages) Nursing Essay
Published: 22nd Apr 2021

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Tagged: disabilitylearning disability

The essay will explore the current service provision in relation to supporting families and carers of individuals living with learning disabilities. It will also clarify its relationship with political and societal drivers which can influence the delivery of services. It will also consider the way individual needs are unique and met and this will be supported by using the requisite literature.

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Family is a group of people who love each other, trust, care for each other, usually of the same blood (but don’t have to be) this is not be to be mistaken with family members who hate each other in the same household. The real family is an unbreakable bondage (Braine & Wray, 2016). However, Carers Trust (2014) states that a Carer is anyone who cares for someone a friend or family member that is suffering from illness, addiction, mental health issue and Learning disability that needs support and care with their daily living activities (DLA). This can be formal or informal carer. The formal carers are the paid professional while the informal carers are the unpaid once. (Carers Trust, 2014). Carers can be of any gender or age and sometimes may be living with the person they are caring for and can also be on daily visitation providing support to their love ones. (Carers UK, 2011) In England as at 2015 there were about 5.4 million unpaid carers and over 280 000 carers in greater Manchester (Family and cares strategy, 2015). Haven defined who a Carer is and the statistic, it is important to understand what the contemporary issue is, which is on supporting families and carers living with learning disability.

The Department of Health (DOH,2018) defined Learning disability as a neurological impairment that affects the individual’s ability to learn and remember which is estimated to affect half a million individuals. Similarly, World Health Organisation (WHO, 2011) defined it as a childhood disability that is often characterized by difficulty in reading, writing which reduces levels of normal intelligence. Gold, (2014) states that this disorder hampers the ability of the individual to interpret what is seen or heard and the ability to link theory to practice. The individual needs to be autonomous although he is being supported by a carer (Emerson & Heslop, 2010).

Therefore, the service provision that are link to the carers strategy 2010 are such that The Department of Health and Social Care (2018) has developed the structure to make provisions for the right of every individual including carers and also identified, addressed, and provide adequate understanding for the care process that will be beneficial to patients and to support the carers. The strategy established a caring with confidence programme which is an education and training for the carers to enable them provide a holistic care to those affected (Carers’ Strategy, 2010).

The strategy identified that informal carers take up the role suddenly and are not prepared therefore, they usually develop health issues such as anxiety, helplessness, depression, grief, isolation, fear and insomnia (Boss, 1999) therefore, this makes them sometimes neglect their health and do not make time for their medical checkup unlike the formal carers that are trained and ready for it.

The strategy also revolves around developing an inclusive action for recognising the need for the carers, providing mental and physical healthcare, and financial support for the disadvantages. The government introduced this act since 2010 to ensure that carers receive external support and life outside the care process (Walker and Ward, 2013).

The government introduced this act since 2010 to ensure the carers receive external support and life outside the care process (Walker and Ward, 2013). The carers’ strategy has been developed to make provision for the right of every individual. Carers’ and easily identified and given adequate help and support for the satisfaction of all concerned (Carers’ Strategy, 2010). The strategy provides education and training for informal carers’ who are entrusted with the serious responsibility of caring for their relatives. If they are not adequately supported, they may develop health issues and deteriorate over time. The care strategy signposts them to resources and services thus enabling them to care for their family.

Therapeutic relationship between patients, carers and nurses make a difference in good nursing practice. It is essential to understand the patient by understanding the for family and carers is important as their job can be stressful.  Nurses ​can also attend carers course to increase the awareness about the carer (DOH, 2015). The adult nurses in the hospital and in the community should create the culture of recognition to support the multidirectional needs of carers. Carers should know when and where to find information and advice. Moreover, the diversity of carers should be respected​because they have expertise for knowledge and skills​ in relation to supporting their relatives during the treatment and recovery process​.(National Institute for Health and Care Excellence (NICE, 2016)). The individual need for autonomy supports the patient with learning disability to make decisions about care thereby participating in own care (Cronin et al,2015).

The Carers’ Act (2014) sets out guidelines to assess carers and their rights to allowances and access treatment.  The survey by Carer’s trust in 2016 found that the strategy is working well to provide good care to the carers, however the service for better awareness of their rights needs improving. In 2018 the government introduced a Green paper to support the employment needs of the carers and avail new care innovation funds for the carers (Sempik and Becker., 2014). Similarly, in Whales in 2016 the Social Services and Wellbeing Act was introduced to provide support and entitlements to the unpaid group of carers (Clements, 2016).

The role of a carer in the support and services of learning disability patients is often ignored though it is crucial. Informal carers compose of around 5.3 million people who provide informal or unpaid care in UK and 70% of them may be family member, parents, relatives or friends. This group of people saves on the cost of health and social care to the government in United Kingdom (UK) Office for National Statistics (ONS, 2015). There are several challenges that informal carers of mentally disabled individual face during their duration of care. These challenges are mainly associated with decreased resources, insufficient external support, lack of finances and employment (Royal College of Nursing, 2015).

Aldridge and Hughes, (2016) states that unpaid carers being immediate family members and friends provide more hours of care than the estimated duration of 20 hours a week which is a legislation by the government. Some culture puts the caring role on families and relatives as a natural duty and obligation (Mary and Julie, 2016). (ONS,2015) agreed with Aldridge and Hughes that the unpaid1.4 million Carers provides care for 20 hours and more has the poverty rate of about 37%. Around 400,000 people are working full time providing care for at least 20 hours a week making it difficult for them to live their lives comfortably and the quality of life. The unpaid carers estimated £20,000 decrease in their annual income due to low level of education and potential loss of job while caring for their relatives (Carers’ Strategy, 2013).

Policies from political drivers are the scripted documentation of the policy under the name “No voice unheard, no right ignored” a consultation for people with a learning disability was introduced by the parliament of the UK. The consultation examined how people’s rights and choices may be strengthened by implementing some key goals (DOH, 2015). These goals included the four domains that ensure the people in charge who are informal carers have the right access to resources and education, the inclusion of independence in the community, right care at the right place and clear accountability and responsibility through the system (DOH, 2010). The National Carers Strategy is well structured and identifies a theme for the provision of the individual with learning disabilities and their carers (Carers Strategy, 2017).

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Societal expectations and drivers which challenge the carers such as ageing population, prevalence of mental disability, lack of cultural awareness and increase in informal carers population and their needs for assessment (Brimblecombe et al., 2018). The population in the UK is growing every year and is identified to have a growth in aged population of about 18% over 65 years of age. According to the ONS (2018) this ratio is going to rise by 24% by the year 2042 (Kulik et al., 2014). Moreover, this increasing age has left most individual vulnerable to isolation from society and prone to mental health disabilities. However, the individual need for autonomy drives the service provision.

According to the Care strategy priority 2 “realizing and releasing the potential” the health and social care services are working with government to promote the rights and wellbeing of informal carers by providing care to them, assessment and respite care system where their loved ones can be cared for while they manage their own life (Cronin et al., 2015). The individual need is met by supporting the patient to collaborate with their own care.

Caring for the disabled individual is challenging and requires specialised training however, informal carers are left with the assumption to provide best care through their own initiative which is a heavy burden (Smith et al., 2015).  Political and societal drivers influence the care process and lead to positive impacts on the wellbeing of the carers. The delivery of the policies impacts on the overall quality of life of the carers. The financial support provided to the carers on the local and national level in the UK includes the Carers’ allowances (Pickard et al., 2015). The eligible carers receive these financial allowances to support and cover their daily living. The House of Commons Committee ensures that the law regarding the flexibility of the working hours for carers is provided and the statutory carer annual leave is maintained which is to allow multiple working scenario (DOH, 2015).

The roles of nurses in general hospital are crucial in providing care and services to the carers and the family members of people with learning disabilities. Nurses equally have a duty to see the carers as healthcare partners and also work alongside in caring for the patients, communicate, listen to, value them and support them emotionally and physically (NMC Code, 2018). The Act introduced by the government as the Carer (Equal Opportunity) Act 2004, emphasis that the local authorities and health services department provide support to the carers (Seddon and Robinson, 2015). Unless the needs of the carers are assessed by the health care team it can lead to system failure (Aoun et al., 2015) Nurses had limited knowledge regarding assessment of the needs of the informal carer because informal carers were not provided specific requirements and appropriate care (Aoun et al., 2015). The individual need is usually overlooked and underappreciated however; the role of the nurse is crucial to advocate for the individual need of the patient. The individual need for autonomy supports the patient to make choices in relation to care (Braine & Wray,2016).

Other ways that the nurse could help is by effective communication, respite care, information sharing, education, assessment and future care planning (Dening and Hibberd, 2016). Nurses have specific professional roles designed to meet the needs of the family and carers alongside the patients’ (Smith et al., 2015).  Carers who juggle with this responsibility for more than 5 years tend to develop physical and mental long-term issues (Carers Uk,2013, Sklenarova et al., 2015, NMC,2018, Walker & Ward,2013).

According to priority 3 and 4 of the Carers’ strategy (2010), the life outside caring and supporting carer to stay healthy, nurses are required to be aware and knowledgeable enough to sign post the carers and the families of the disabled individual in order to alleviate the sense of isolation the carer faces. Treating carer as an expert on patient care planning is required. Nurses should consider the families and carers along with the individual need for autonomy to deliver family centred care for the satisfaction of all concerned (Ewing et al., 2015).

In conclusion, the current service provision towards supporting families and carers was explored. UK is among the nations in Europe which support government policies and societal expectations in relation to Supporting Carer and families of people with learning disability. The NHS implements quality driven policies in the different Trust although some economic factors such as monetary funds may hinder the full involvement of families and carers. The essay has explored the legislation such as the Carer strategy and other government proposals which help the nurses to adapt their nursing practice in order to meet the needs of families and carers. The main finding from the report drives the urgent need about the service provision for supporting families and carers of relatives with learning disability. The individual need for autonomy and the right to choose ultimately supports patient’s own participation in care for families and Carer. This inevitably provides satisfaction for all concerned and drives the service provision.


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Generally Learning Disability can be defined as a cognitive disorder that adversely affects people's ability to interpret visual and auditory information or to link different pieces of information from different parts of the brain to integrate them in a coherent manner.

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