Inability to digest food and drinks due to dysphagia; requires assistance to eat and drink
Arthritis
Epilepsy
Pain management
Taking and monitoring medication and their side-effects
Doubly incontinent
Personal hygiene; needs help with washing and bathing.
Thomas has suffered a heart attack and has been admitted to the ward on which Sally, the senior staff nurse introduced in Chapter 1, works.
WHAT IS PMLD?
What does profound and multiple learning disability (PMLD) mean? That is a fair question; after all, for some HCAs, student nurses and staff nurses, the whole idea of having a learning disability may be difficult to comprehend, let alone its various components or manifestations.
It is notoriously difficult to estimate with any precision the number of those with a PMLD in the UK. However, it is estimated that there are between 250 000 and 350 000 people in the UK who have a PMLD (Foundation for People with Learning Disabilities, 2005). Those with a PMLD, as well as having a profound learning disability (as indicated by an IQ of less than 40), are likely to have more than one disability which could include:
Neurological issues such as epilepsy
Physical disabilities such as cerebral palsy which will impact on the person’s mobility
Significant communication, eating and drinking problems
Respiratory and cardiovascular problems, sensory impairments, mental health issues, ‘classic autism’
Increased health problems that could be associated with any or all of the above.
Those with a PMLD are thus very likely to need significant additional support in order to maintain an optimum level of health and to engage within society.
TWELVE ACTIVITIES OF DAILY LIVING
In the past, as they are today, student nurses in all four pre-registration fields of practice were taught the vital importance of assessing the holistic needs of the patient or service user and then planning, implementing and evaluating a therapeutic and supportive care plan that met these assessed needs. This process of assessing, planning, implementing and evaluating care intervention was known as the ‘nursing process’. This nursing process utilised the work of three nursing theorists (Nancy Roper, Winifred Logan and Alison Tierney): this work being the ‘twelve activities of daily living’ (ADLs) (Roper, Logan and Tierney, 1980; 2000).
The twelve activities of daily living are:
Maintaining a safe environment
Communication
Breathing
Eating and drinking
Elimination
Washing and dressing
Controlling temperature
Mobilisation
Working and playing
Expressing sexuality
Sleeping
Death and dying.
These twelve activities of daily living often served as a useful structure for patient or service user assessment and resultant care planning, usually within a hospital setting. However, mental health, neurological issues such as epilepsy, emotional care and spiritual care appeared to be missing from this particular care model and any holistic health care assessment and resultant care and support package must take these elements into account. As Thomas is likely to experience and express a need for a high level of support in virtually all areas of his life, this model of assessment and support will be utilised.
The role of the nurse
Within this current context, the first role of the nurse, nursing student and HCA is to reassure Thomas, who is likely to be anxious if not downright scared. Do not forget that Thomas is likely to be in pain and confused as he is in an unfamiliar environment and among people that he does not know. All of these are likely to increase his anxiety levels.
Their second priority is to assess holistically Thomas’s needs with a ‘strengths and needs’ model, using the framework suggested by the twelve activities of daily living. Parts of this assessment may be relatively straightforward to complete and record, whilst other aspects may be less so. Do not forget to involve Thomas, any care staff from his care home and his family (if appropriate) in this assessment as much as possible, as not only will much useful information be gathered this way but it is also good practice. After all, if you (the reader) were a hospital patient, would you like your own care needs assessed and planned for without your involvement? Ideally, any care assessment and resultant care planning should be done on a multi-disciplinary basis, and this must include the views of the patient. Check and use any ‘hospital pass-book’ that may accompany Thomas, as this is likely to contain much useful information about Thomas’s likes, dislikes and needs as well as how his needs are usually met. Any resultant care plans must likewise be holistic and incorporate Thomas’s views, likes and dislikes.
Maintaining a safe environment
Thomas, along with everyone else, needs a safe environment in which to live. Maintaining a safe environment for Thomas is likely to include many of the following:
Does Thomas have a history of falls, epilepsy or ear infections that may affect his balance?
Does Thomas have any known allergies that could impact upon the care and support that he receives whilst in the hospital?
Does Thomas require any specific manual handling equipment and if so, is this equipment such as hoists and slings regularly serviced and maintained?
Does Thomas require mobility assistance, such as wheelchairs?
Does Thomas require assistance to maintain healthy skin and prevent the occurrence of skin tissue breakdown such as pressure sores and ulcers?
Does Thomas require any specific ‘feeding equipment’ such as percutaneous endoscopic gastrostomy (PEG) equipment in order to maintain optimum nutrition and if so, is this feeding equipment regularly cleaned, serviced and maintained?
Are nursing and other care staff adequately and appropriately trained to use any equipment that Thomas needs to maintain optimum health?
Is Thomas’s immediate environment free from unacceptable and inappropriate risks, such as clutter?
Communication
Thomas has very little verbal communication skill and is limited to grunts, groans, cries and the occasional scream. Thomas communicates through facial expression, body language, basic Makaton and the occasional ‘verbalisation’. Makaton is a sign language that was derived from British Sign Language and is used with and by people with a learning disability and, more recently, those with Alzheimer’s dementia. Makaton is a language programme using signs and symbols to help people to communicate. It is designed to support spoken language and the signs and symbols are used with speech, in spoken word order (Makaton Charity, 2014).
Thomas has a variety of communication problems and needs (Griffiths and Doyle, 2009). These include making himself understood, understanding others, and having to rely on others to interpret what he is trying to say.
It is imperative that, at least initially, Sally take her cue from the care home staff that have accompanied Thomas. Once Sally gets to know Thomas, she should build upon her observations of Thomas and the way that he communicates with his care home staff and initiate conversations with him. Never forget, communication is a basic human right.
Breathing