A long-term condition is the description given to an illness or disease that has no existing cure but can be managed by drug therapies and ongoing reviews (Buesa-Estelléz et al., 2019). Around two million people, (40% of the Scottish population) suffer from long-term conditions, meaning that at least one in four people will have a lifelong condition (Scottish Government, 2019). For this portfolio the long-term condition Multiple Sclerosis (MS) will be at focus. MS is a progressive neurological disease which impacts the central nervous system (CNS) which is composed of the brain and spinal cord (Hao,Y et al, 2019). This degenerative disease affects young adults from the youngest of twenty and is one of the most common long-term conditions in Scotland. Furthermore, it is evidenced by (McKenzie et al, 2014) that MS is highly common in the Northern hemisphere as research done in 2014 indicated that Scottish individuals where higher effected by MS than England and Wales. Recent research conducted in 2014, shows that 126,669 individuals in the UK had been diagnosed with MS (McKenzie et al, 2014). Additionally, there is a variety of causes that trigger the onset of MS, however there is no signalised diagnosis as to how or why this condition affects a large variety of people. In some research cases of aetiology, it is suggested that lack of vitamin D, genetics, viral infections, and life style choices, such as smoking, and drinking contribute to the trigger of MS (Willis, 2019). It is also stated by (Handel, A. E., Giovannoni, G., Ebers, G. C., & Ramagopalan, S. V., 2010) that being female increases chances of triggering MS, as there is the ratio of female to male three to one. Evidence suggested by (Trojano, M et al, 2012) states that there are current undergoing investigations as to why there is an increasingly higher chance for females to be affected by MS than males.
Multiple sclerosis, role of the nurse, holistic, management, independence, treatment, reflection, physiology
Multiple Sclerosis is a complexed demyelinating disease which has the potential to relapse and eventually cause full body paralysis (Fleming, 2013). MS a chronic autoimmune disease which attack the central nervous system, composed of both the spinal cord and brain (Ross and Wilson, 2014). MS attacks the myelination within the CNS causing demyelination and therefore leaves the axons exposed without the myelin. Myelin is the protective layer which circulates the axon creating a rapid response and current for electrical impulses to be passed from the brain, through out the body and to the receptor which creates a movement or response in which the brain controls (Goldenberg, 2012). The electrical impulses known as “action potential” travels through thousands of nerve cells also known as neurons decorate throughout the entire body (Huang, Chen and Zhang, 2017). In healthy anatomy the flow of the action potential should travel from the dendrites, to the axon surrounded by myelin, towards the axon terminal and finally finishing at the synaptic bulb (Ross and Wilson, 2014). If the action potential was to be further passed on from what is known as the pre-synaptic bulb it will do so by crossing the synaptic gap and reaching the receptor cells on the opposing side. This travel is carried out by a chemical known as neurotransmitters, which move across the synaptic cleft and bind onto proteins exposed on the post-synaptic dendrite (Nair and Peate, 2013). These exposed proteins on the surface are known as receptors which allow the neurotransmitters to bind, allowing the impulse to continue its journey (Ross and Wilson, 2014).
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Furthermore, within the contents of the brain there is a source of protection known as the blood brain barrier (BBB) (Ross and Wilson, 2014). This barrier regulates the ions within the blood and prevent toxic substances bypassing the barrier creating a defence against disease and infection. Furthermore, the physiological barrier is coordinated by a series of properties such as metabolic, physical and transport (Daneman and Prat, 2015). These properties are possessed by endothelial cells which form the red blood cell walls and support a permeable membrane. This membrane controls the access of certain molecules that try to exchange throughout the cell such as; oxygen (a nutrient gas), carbon dioxide (waste product), as well as glucose an energy source which the cell requires to preform activity (Ross and Wilson, 2014). Furthermore, this membrane again acts as a protective shield against larger or impermeable molecules, ensuring that it’s harder or that they cannot pass through the membrane.
Due to the nature of MS the T-cells will pass through the BBB from the healthy immune system and start to attach and destroy the myelin insulating the axons (Harp, et al., 2015).
Once the T- cells latch onto the myelin they attract cytokines (Daneman and Prat, 2015). Cytokines attract cells that are released during inflammation such as; B-cells and macrophages which then cause antibodies to target or mark the myelin proteins causing the macrophages to engulf oligodendrocytes (Ross and Wilson, 2014). Once the oligodendrocytes are engulfed there are no cells to create and repair myelin. Therefore, this is described as autoimmune disease as they are preforming demyelination. Demyelination causes the rapid communication from brain to body to breakdown and therefore the electronic impulse will no longer reach the desired receptors, resulting in communication breakdown (Huang, Chen and Zhang, 2017).
MS affects every individuals body differently, within some cases changes within the nervous system will remain unnoticed and in extended cases can cause full body paralysis. Within the physical aspect tremors, feeling numb and complete loss of involuntary muscle movement and coordination are extremely common within MS (Ross and Wilson, 2014). Due to the placement of plaques of where the myelin has been destroyed or damaged, the signs and symptoms will vary. The plaques will be highlighted when a patient is forwarded for an MRI of the brain in which a dye will encourage white lesions to show indicating where damage is present (Paul, 2016). Furthermore, MS also can inhibit the emotional and mental state of the patient, causing depression, isolation and unable to cognitively solve simple problems. However, relating back to the physical aspect some patients tend to lose everyday independent functions such as speech, bowel and bladder movements and eye coordination (Paul, 2016). This can ultimately make MS one of the toughest long-term conditions to live with.
Management of an MS patient’s journey will be the focus of this section and will include the aspects of holistic nursing practice as well as the focus upon the role of the nurse. With MS being of its aggressive nature, nurses are the sun of the diverse medical solar system. Behind a MS patient’s there is a multidisciplinary team who work together to promote the well-being of the patient (National Institute for Care and Excellence (NICE), 2014). Using an multi-disciplinary team (MDT) is a large promotion to the quality of life for an individual as the MDT covers all the aspects of care, ranging from a specialised MS nurse, to a speech and language therapist, to finally their own general practitioner. Without the all-around care and communication from the different sectors of health and social care the individual cannot be holistically cared for as elements will be missed (National Institute for Care and Excellence (NICE), 2014).
To focus upon the role of the nurse is to ultimately look at a patient with equality and holistically as no two MS cases will be identical. In terms of “holistic” that means that the nurse must look at each patient; physical, spiritual, biological, social, phycological needs and desires. These elements of holistic care can be met by identifying what is important to that individual such as independence, spiritual routine, their emotional status throughout their journey and what their goals are living with this long-term condition (NMC, 2015).
The first approach a nurse should always use to achieve holistic care is a professional and compassionate bond with the patient (Forbes et al., 2003). It is evidenced by (Forbes, While, Dyson, Grocott and Griffiths, 2003) that a strong professional bond will enable patients to project their emotions and ideas about their own treatment and this also empowers their sense of control of their care. As MS can cause complete paralysis, empowering them to feel in control is vital therefore respecting their individuality and giving them choice about their care promotes that control.
Furthermore, management doesn’t just focus upon the holistic care of the individual patient but focuses on the family aspect as well. Stated by (Haynes-Lawrence and West, 2018) that families are commonly found to be emotionally and physically exhausted by this long-term condition. (Haynes-Lawrence and West, 2018) states that it is common finding that during early diagnosis of the condition there is much anxiety and misunderstanding to what the condition is. As the illness relapses it is commonly found that stress and fatigue is shared amongst carers (Embrey, 2014). However, throughout the care the key role of the nurse is to recognise these common features within families and support them as well as the patient. Therefore, with a positive relationship with patient and family these emotional and physical elements that families suffer can be avoided by providing support on their loved one’s long-term condition, ensure that communications between family and MDT are regularly met and finally offer them round the clock support (Patten, Marrie and Carta, 2017).
Focusing upon management of physical review it is vital that the patient is reviewed on a regular basis, to clearly identify what must be done to preserve and promote what quality of life that they have. It is clearly outlined by (Turner et al., 2013) that MS has one of the highest causes of depression and anxiety. It is outlined by the NMC code that it is a nurse’s role to ensure that their change in health is recognised and to prevent poor practice (NMC, 2015). As depression is presently being illustrated as a ‘trend’. Therefore, it’s important that poor attitude is abolished from that individual’s environment to promote high self-worth and feel of belonging (Turner et al.,2013). Therefore, the role of the nurse here is identified to be educating those whom are not fully aware of what depression is and if it is in relation to a family member of older generation, explain why their loved one is experiencing a depressive state. Furthermore, the role of the nurse in this specific element is to prevent any further harm and provide an extension of communication, in other words refer the individual to expert help. This can be done through phycological referral such as recruiting the likes of ‘Phsyic’ which is the mental health practitioners to the MDT (NMC,2018). These specialised individuals are experienced within the emotional and phycological process and therefore understands a positive approach to the condition. These positive approaches can be shared with the nursing staff expanding and developing their practice. As stated by the (NMC,2015) all health professionals should share information and skills to integrate health care.
In relation to depression (Turner et al., 2013) evidences that MS individuals tend to have their physical capability impacted by depression. Therefore, patients tend to give up with physical activity and become withdrawn from social interaction. At this stage it is the nurses key role not only to review and recognise deterioration within a patient but to be a support system and forward planner.
Planning the journey and making crucial changes to a plan is also necessarily a massive key role in holistic nursing. As MS is a relapsing condition, deterioration and progression can differentiate in great measures (Gold et al., 2014). As previously discussed prior to this section, MS can be undetected for a long-period of time, which can make it harder to baseline what that individual’s healthy anatomy and physical ability was (Gold et al., 2014). A baseline in health care is created to aid the MDT in their recordings and monitoring of the modern-day patient. The nurse must record their findings in order to achieve the best outcome and communicate with the other members of the MDT looking after that patient. The nurse must ensure that they record any new findings and report on the general health of the individual in care. This means that the nurse must ensure that the care plan is regularly updated, and entries are accurately recorded as stated by the NMC Code (NMC, 2015). Additionally, all care plans are accessible to all MDT members the data must be communicated clearly between each party, however data must be maintained as private and not be shared with individuals whom are not within that specific MDT. Therefore, another role of the nurse is to ensure data is securely kept private (NMC,2015).
Evidenced by (Coulter et al., 2015) in holistic nursing a care plan is formed around the individual being looked after from the minute they are referred to care. The plan simply consists of an overall look at the condition and the patient. For example, a baseline will be established of what the patient is like when they first initiate ongoing care. This baseline will help the MDT recognise the progression of the condition and measure the progression and effect it’s having on the individual over that individual’s lifetime (Coulter et al., 2015). Bypassing the baseline, forwards onto the main body of the care plan, which in some care plans breakdown into one of the most common strategies developed by (Roper, Logan and Tierney, 2000). (Roper, Logan and Tierney, 2000) suggest that a human being can be broken into main elements described of “Activities of Daily Living” or (ADL’s) which project a holistic view. These are used to base an individual’s independence, current health and state of being (Mlinac & Feng, 2016). An example of the ADL’s in use is asking about an individual’s ability to climb the stairs in their house, are they able to go out independently or do they use any mobility aids? This allows the nurse to honestly assess their condition and if so forward them to a member of the MDT who can better the quality of their mobility and communicate further to social work or occupational therapists to further assess their physical situation (Mlinac and Feng, 2016). Therefore, the specific role for the nurse in this situation is a wide range; reviewing the patient, recording specific findings regularly, supporting the patient and being the communitive link between the patient and MDT (Mlinac & Feng, 2016).
Education is a virtue in nursing and passing that education onto MS patients and their families is a bonding and appreciated quality. Stated by (Corben and Rosen, 2005) of patient’s families feel that in some experiences they feel that information is kept withdrawn from them which makes it difficult for an honest and respectful relationship to be built between the nurse and family. However, as a MS nurse is deemed to be the first port of call for a patient and their family this is often not the case. The nurse will project as much knowledge and educate the family of the MS patient as much as possible to avoid misunderstandings and miscommunication. For example, it is found that it is common for families and patients to research their condition or signs and symptoms on the internet (Writers, 2019). Therefore, to avoid this common problem, the nurse must expand their knowledge onto the family and patient.
Evidenced by (Writers, 2019) educating individuals about health can be done in a variety of different ways; several review meetings, encouraging educational reading (supplied by the MDT), ask them what they already know and teach them how to self-medicate.
Finally, in terms of further education, self-management is probably the biggest part of managing a long-term condition. By ensuring a patient can self-medicate it positively encourages person-centred care and encourages independence. As independence is a confident and fulfilling feeling it allows the patient to feel a sense of dignity which is important in a holistic setting. Furthermore, as claimed by (Litchfield and Thomas, 2010) MS is a dignity and self-esteem stealing disease it is heavily important that education on their management and medication is available. Published by the (Scottish Government, 2008) there is a document directed at Scottish patients that have long term conditions ‘Gaun Yersel’. ‘Gaun Yersel’ educates these patients going through basic management procedure, from being newly diagnosed straight through to end of life. ‘Gaun Yersel’ empowers an individual to have ownership of their health and educate themselves on what to expect from both professional’s (Scottish Government, 2008). The idea behind this document is that it can be used as an education and support tool to not only guide the patient but the nurse in terms of framework. For example, ‘Gaun Yersel’ provides standards for a nurse when educating. This could be as simple as using the correct communication framework, such as SOAR (Khavarian-Garmsir and Zare, 2014) This stands for Strengths, Opportunities, Aspirations and Results. This framework helps nurses with their role as it sets out a clear way to communicate with patients when setting out goals for their self-management. For example, asking a patient what their strength in knowledge about their condition is, gives a clear outline of how to educate further (NMC, 2019).
Description (written in the first person)
In my current placement I experienced a diagnosis of stage four throat cancer of a middle aged woman, who had previously just been cleared of a different type of cancer. The doctor was very blunt and showed very little empathy for the woman. I was outside recording observations within the folders and overheard the conversation as the doctor left the door open and had a high projecting voice.
Feeling (written in the first person)
What were you thinking and feeling?
At first, I felt empathetic for the woman and was extremely upset and horrified after only just meeting her for the first time and receiving a handover about her current condition. Which at the time the tumour was seen a benign and able to be removed by surgery. However due to other medical circumstances the procedure was cancelled, and the tumour had spread. Furthermore, I was greatly disgusted by the doctor’s bluntness, quick run through of bad news and uncomforting facial expression. It was poor practice and I felt like reporting to the senior nurse, however I also thought of my position as a student. Who was I to question someone higher ranked and more experienced than myself.
Evaluation (written in the first person)
What was good and bad about the experience?
I think the good thing about the practice was that the doctor didn’t sugar coat the situation and immediately discussed what was happening within the woman and that there was nothing more that they could do. However, I feel that the doctor should have asked the patient for her loved ones to attend the meeting with the doctor. The doctor could’ve protected that individual’s privacy by closing the door and show more empathy within the practicing that breaking of bad news.
Analysis (written in the 3rd person & requires supporting evidence)
What sense can you make of the situation?
From the recent experienced encountered in my recent practice it has became apparent that the doctor had performed efficiently, however lacked empathy through breaking bad news and this is deemed as poor practice. The SPIKES framework developed by (Baile, Buckman, Lenzi, Glober, Beale and Kudelka 2000), could have enhanced this conversation positively. SPIKES is a brilliant framework as it sets out the different elements in which a conversation should be based upon. S- setting, P- perception, I-invitation, K-knowledge, E-empathy and finally S- strategy and summary. Though the setting of the conversation was held within a side room the door remained open and the doctor could be seen standing which could indicate lack of empathy or a rushed conversation (Voytek and Knight, 2015) .The doctor could have reached out to include the family, closed the door and sit down to create a bond eye to eye indicating that she had the time to break the news with emotion (Den Hertog and Niessen, 2019). Furthermore, instead of telling the woman bluntly and using closed questions she could’ve asked open questions to create engagement and ensure that the woman could query the future. Stated by (Moore, Rivera, Bravo-Soto, Olivares and Lawrie, 2018) that asking open questions does create a person-centred approach and can clearly identify how much the patient understands as shock can inhibit the brain. Therefore, making the conversation a blur and leaving the individual in the dark.
Empathy would’ve created a positive outcome to the situation instead of an awkward tension at the end of the short summary of results that where projected rapidly towards the patient. Instead the doctor could’ve really broke the conversation down with small pauses and allowed the patient to express emotion and then respond to the reaction with empathy and apology. By creating a pause in the conversation, the doctor will be able to monitor emotional response and give the patient time to clear the rapid impulse of emotions that they will feel. Therefore, after the emotional break the doctor must expand the hand over to the patient and allow them to ask questions and offer emotional support. Finally, the doctor should conclude with leaving the offer of being able to ask questions or talk generalised about the next steps.
Conclusion (written in the first person)
What else could you have done?
I think instead of feeling minor about the situation I should’ve spoken to the nurse in change that day and projected my concern about the event which took place in the room. I think that with permission I could’ve offered to be within the room with the patient if the family was unable to attend as well as stay with the patient for the aftermath of the conversation and try to shed a positive thought or just be there to hold her hand and comfort her.
In conclusion a MS is an aggressive condition that can strike upon anyone and without the correct nursing and the correct management it can easily destroy and claim thousands of lives every day. Ensuring that holistic care is essential to receive the ultimate personalised care. It’s important that information is passed through the multi-disciplinary team and kept secure within that team to prevent data breach. It’s also important that the nurse sticks to the Nursing Midwifery Code to ensure standards to ensure that the care provided is successful and that patient care is excellent. Furthermore, it is also important that family is educated, included and communicated about the long-term condition to prevent communication breakdown and put the people who matter the most to the patient in the centre of the care. It’s also important to strive for self-management to encourage independence in patients and promote self-esteem. Finally, it is extremely important when reflecting on previous events to learn what is good practice and what is not. By reflecting upon negative practice makes the nurse aware of how to approach breaking negative news in a comforting way.
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Gibbs (1988) Reflective Model
Reflection allows you to think about the things you have seen and done and to consider whether you were satisfied with your performance or whether you would handle the situation differently in the future.In order to complete the reflection element of your portfolio please use Gibbs reflective model (1988) below to structure your reflective account.
Gibbs (1988) Reflective Model
If it arose again what would you do?
What were you thinking and feeling?
What else could you have done?
What was good and bad about the experience?
What sense can you make of the situation?
Figure adapted from:
Rolfe, G., Freshwater, D. & Jasper, M. (2001). Critical reflection for nursing and the helping professions, a user’s guide. London: Palgrave.
- Gibbs, G. (1988). Learning by Doing: A guide to teaching and learning methods. Oxford: Oxford Polytechnic Further Education Unit.
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