Thomas needs to be kept fully engaged in social activities during the day
Disruption to Thomas’s night-time sleep pattern must be kept to a minimum
Thomas’s medication may need to be reviewed as insomnia may feature as a side-effect of some pre-existing medication and the introduction of ‘night-time sedation’ may need to be considered (although this is likely to be a last resort measure).
Death and dying
As with sexuality, death and dying is one of the two most contentious ADLs. Whilst Thomas shares this ultimate destiny with all of humanity and, indeed, with all living things, this is not to say that Thomas will die or is likely to, whilst in Sally’s care. Nonetheless, the possibility of Thomas’s death must be acknowledged and accepted.
Sally’s roles are to reassure Thomas and explain to him what is happening in ways that he can understand and to liaise and work with other members of the hospital care team, including the hospital chaplaincy team if appropriate, Thomas’s family and Thomas’s care home staff, in relation to end of life care (whether these needs are perceived or actual).
CONCLUSION
As can be seen from the above, PMLD affects Thomas in virtually every aspect of his life. It is likely that, at some point in Sally’s career as a staff nurse or nurse manager she will come into contact and work with patients like Thomas, so the aim of this chapter is to provide a small number of suggestions as to how Sally can work with and meet the needs of those with a PMLD within a hospital setting. However, be warned: the use of the ‘twelve activities of daily living’ and other similar assessment and care planning models are not to be used as a sterile ‘tick box’ activity, nor to be written in stone. Those with a PMLD deserve and have a right to better than that. Such models are to be seen and used as guidance for appropriate care assessment and planning only.
KEY POINTS
|
|
It is estimated that there are between 250 000 and 350 000 people in the UK who have a PMLD. |
|
|
PMLD can be defined as having an IQ level of below 40 and with a wide range of additional physical, neurological and sensory disabilities. |
|
|
One of the models of care that may be useful in meeting the holistic care needs of those with a PMLD is the twelve activities of daily living devised by Roper, Logan and Tierney. |
|
|
Caution must be exercised in not turning this care model into a ‘tick box’ method of caring. |
REFERENCES
Foundation for People with Learning Disabilities (2005) Available at: www.learningdisabilities.org.uk/page.cfm (last accessed 16 October 2014)
Griffiths, C. & Doyle, C. (2009) Nursing people with profound and multiple learning disabilities. In Jukes, M. (ed.) (2009) Learning Disability Nursing Practice. London, Quay Books.
Makaton Charity (2014) About Makaton. Available at: www.makaton.org/aboutMakaton/ (last accessed 16 October 2014)
Roper, N., Logan, W.W. & Tierney, A.J. (1980) The Elements of Nursing. Churchill Livingstone.
Roper, N., Logan, W.W. & Tierney, A.J. (2000) The Roper–Logan–Tierney Model of Nursing: based on activities of living. Edinburgh: Elsevier Health Sciences.
04
LEGISLATION, STRATEGIES AND REPORTS FOR THOSE WITH A LEARNING DISABILITY
AIMS AND LEARNING OUTCOMES:
The aims of this chapter are to highlight:
The differences between the various forms of legislation and associated documents
The various laws, White Papers and reports that have an impact specific to those with a learning disability
A number of issues within these documents that have a specific impact upon nurses and nursing practice.
By the end of this chapter, the reader will be able to have a working knowledge of:
The differences between a Parliamentary Bill, a Parliamentary Act, a Green Paper, a White Paper and an independent report
The various pieces of legislation and associated documents that have a specific impact upon those with a learning disability
How these various documents may impact upon their own nursing practice.
PAUSE FOR THOUGHT 4.1
Those who are not aware of and understand their history are condemned to repeat its mistakes: discuss!
INTRODUCTION
The area of health and social care law, Green Papers, White Papers and reports is both fascinating and complex. It can certainly be confusing and frustrating! Yet, not to have a working knowledge and understanding of these relevant Government documents that impact upon the lives of those with a learning disability could, and probably will, have serious consequences on the quality and forms of services that people with a learning disability receive. Understanding these government documents and policies will help you to both comply with the law and provide high-quality care to people with a learning disability.
It must be stated here that those who have a learning disability are subject to the same laws, both civil and criminal, as everyone else in society; having a learning disability does not exclude the person from the consequences, rights and responsibilities of the law and their conduct under the law, and neither should it! However, there are a number of laws that have a specific impact upon those with a learning disability and these will serve as the basis for this chapter.
Hanif (the 2nd year student nurse), Marcel (the young man who has Down’s syndrome) and Ziva (Marcel’s sister who also has high-functioning autism/Asperger’s syndrome) have very kindly agreed to act as your guides throughout this chapter.
This chapter will highlight the contents and the impact of the wide variety of Parliamentary Bills, Parliamentary Acts, White Papers and reports that impact upon the lives of those with a learning disability over the past 40 years.
DIFFERENCES BETWEEN BILLS, ACTS, WHITE PAPERS, GREEN PAPERS AND REPORTS
It seems almost like every day that this, that or the other Bill, Act, report or whatever is released and highlighted in the daily newspapers, on radio and TV. There is no way that we, as members of society, can ignore such media attention and debate into what may often seem to be rather dry, obscure, obtuse and even apparently irrelevant issues. And neither should we. As nurses, as health care professionals we live and work in a legislation-rich environment and that is the way it has always been, always will be and indeed must be!
So, what is the difference between a Parliamentary Bill, a Parliamentary Act, a Green Paper, a White Paper and an independently commissioned report?
Marcel: Welcome to this brief highlighting of the various laws and reports that have such a huge effect on me and those like me. To be honest, I find that I can’t quite get my head around much of these laws and reports and I am not alone here. Therefore, to a large extent I have to rely upon you, our reader, and your nursing and medical