Caring For Adults With Long-Term Condition: Parkinson’s Disease
The aim of this essay is to explore, critically analyse and evaluate what a Long-Term Health Condition is. It will mainly focus on Parkinson’s Disease, a Long-Term Condition (LTC), which is listed on the compendium of long-term condition from the Department of Health. This essay will also try to look and review the available medications, surgical interventions and managements that are accessible to patients who suffer from this disease. It will evaluate the role of the multidisciplinary team to this type of disease and to help us better understand this life limiting or long-term condition. This essay will also tackle on a case of an elderly female patient living and suffering with Parkinson’s Disease. To preserve the confidentiality and privacy the name and settings of this case study will all be used anonymously. This case study will lay out some key aspects of LTCs and impact to the patient’s physical, social and psychological condition. This essay will also look onto care and management given by nurses and multidisciplinary team and any means of support from family and other Parkinson’s disease support organisations as well. A range of academic literatures and some personal account will be used and explore throughout this essay.
LTC as defined by Department of Health (2005) is a chronic diseases or conditions that can restrain or limit lifestyle and which at present there is no cure, however, Lloyd and Heller (2012) argued that although these conditions are life threatening they are now being controlled and managed. The Office for National Statistics (2009) said that the changes within our statistics here in the UK are confident and certain meaning the total number of people with LTC will increase. According to The King’s Fund (2012) there are about 15 million people in England have LTC and are prevalent in older people which accounts to 58 per cent of people over 60 in contrast to 14 per cent under 40. Furthermore, study of individual conditions recommends that the numbers are growing and the number of people with multiple LTC appears to be surging. According to Department of Health (2012) publication, patients with LTC are also the intensive users of health and social care services including community services, urgent and emergency care and acute services. In addition to the Department of Health statement, LTC has been described as one of the three top priorities for the NHS in the period up to 2008 and LTCs have become a priority because of the changing concern of the disease as stated by NHS Improvement Plan (2004).
Parkinson’s Disease (PD) is such a broad and complex disease. It is a degenerative condition named after an English surgeon, James Parkinson, who helped clarify the characteristics of the physical presentations correlated with this disorder in his published work in 1817 titled “an essay on the shaking palsy”. As affirmed by Davis (2002) PD is a chronic, progressive neurologic disease and it presents with four cardinal motor manifestations and these are tremor at rest, rigidity, bradykinesia (slowing of movement), and postural instability. The best example is the late Mohammad Ali, the famous boxer has PD manifesting these kinds of symptoms. Furthermore, World Health Organisation (2006) stated that since James Parkinson’s work was published, PD has been studied extensively and found to be an idiopathic loss of cells in the region of the brain known as the substantia nigra which are responsible for producing dopamine. Dopamine is the neurotransmitter that is responsible for controlling and coordinating movement, and progressive loss of dopamine will reduce the capability to control motor function. This will also result in an imbalance of activity between the direct and the indirect motor pathways within the basal ganglia motor circuit. However, a study made by Riederer and Lange (1992) that PD may appear from different insults like genetic susceptibility, ageing process, oxidative strain and environmental toxins resulting to damage or death of the dopamine neurons. Now, question comes to our minds, who gets this terrible and life-threatening disease?
It is very sad to say that PD affects the older members of the society between fifty-five to sixty years old. But saying that, younger people also develop this disease and it is said that one in twenty of the people who is diagnosed is shockingly under the age of forty argued by Griffiths and Coene (2000). According to NHS UK (2016) there are an estimated 127, 000 people in the UK which means it is around 1 in 500 people are being affected by PD. There is also a rising prevalence with age and higher incidence of this disease in men. According to Griffiths and Coene (2000) Parkinson’s Disease is not an infectious disease and not contagious so we cannot catch it through mere physical contact and it is not caused by drinking alcohol or caused by stress either as some people may think and there is no proven link with particular occupations that cause this disease. But in contrast to that, Grosset (2009) said that a study in Rochester shows that occupations like physicians had a higher risk of developing PD while those who worked in construction and welders. Funny enough to say that those highly educated people are more susceptible in getting this disease for using their brains as it should. Aragon and Kings (2010) explained diagnosing PD is quite complex and no available biochemical test and actual scan to confirm the existence of this disease, but we can suspect someone who suffers from PD by looking at their signs and motor symptoms.
Although we can see these symptoms on person with PD, they also vary from person to person, as Griffiths and Coene (2000) said no two people with Parkinson’s are alike. There are also non-motor symptoms of PD that develop and sometimes occurs before the motor symptoms but less recognised and understood some of these might be related to the primary motor symptoms. Non-motor symptoms of PD include depression, neuropsychological dysfunctions, cognitive deficits, sleep disturbance, fatigue, and sense of smell deficiency, in other words the healthy mental well-being is disturbed and affected. As mentioned earlier, to better understand this disease, this essay will look into a case of a lady who suffers from Parkinson’s Disease.
Anna (not her real name) was diagnosed when she was 59 years old. She has 2 children, and both have family and live miles away. Anna lives with her husband in a 3-bedroom house. The couple used to have an active way of life as they live independently and love to walk and do gardening in their spare times. At first her husband saw something different on the way Anna walks. As argued by Percival and Hobson (2003) the diagnosis of PD is not that easy although tremors are the most common sign but loss of normal swing on one or probably both arms are often an early feature. Then Anna started to notice that she was struggling to pick tiny things up because hand dexterity issues. Then symptoms come one after another, she developed tremors that she could not explain what it was. She thought she might be just tired or overworked. As most if not all of the known diseases are important to have an early diagnosis, in PD, it is crucial to have an early diagnosis and if the disease is suspected, they should be introduced as quick as possible to a neurologist with a special interest in PD. As time passes by her symptoms has gotten bad, the tremors were getting worst and she has been having sleepless nights as well. After a month or so of anxiety and confused about what is actually happening Anna decided to see her General Practitioner (GP). With Anna’s presenting signs and symptoms, her GP knew there was something not right with her condition and agreed to refer her to a specialist (neurologist). The literature on NICE Guideline UK (2018) has highlighted that a PD patient should be referred to a specialist not more than six weeks and in cases where the patient condition is severe or complex, this must not exceed two weeks referral time. With Anna’s case, she has been referred to a specialist in a timely manner. Just to stress out at this point according to Aragon et al. (2007) that GP’s today have a lot more they can do to help their PD patients with regards to non-motor symptoms that includes sleep disturbance, dysphagia, constipation, hypotension, depression and dementia.
Furthermore, analysis is based on the conceptual framework proposed by SIGN (2010) that patients suspecting with PD diagnosis may gain from dopamine replacement therapy trial to help with an accurate diagnosis. The neurologist prescribed Levodopa, a PD medication, to Anna for trial if it will work and it did work thus confirming her diagnosis of PD. Anna and her husband were confused and devastated at the same time about the unpleasant news considering their little knowledge about the disease. They were shocked, scared and anxious because they knew PD is often perceived as life threatening and can alter all dimensions of life according to Swinn (2005). Having said that, Griffiths and Coene (2000) stated that, some people accepted the news as a relief because finally they have the answer and the long and unclear period of medical examinations have ended.
The impact of the diagnosis to Anna did not do her any good at all. She was scared for herself that she might not be able to do things as she normally does. She was confused whether to tell her children or not as she does not want to trouble them. She felt sorry for her husband as she does not want to burden him. These are the psychological impact to Anna that may lead to depression. At this stage Parkinson’s Disease Nurse Specialists (PDNS) have a crucial role to help patient accept the diagnosis through planning and counselling according to Noble (1998). Moreover, patients who do not get appropriate education about their diagnosis may project negative mental state against healthcare professionals and towards their condition. Ward and Browne (2014) discussed PDNSs are the one who can make changes to prescription as appropriate, they closely monitor patient’s condition, they give support to both family/carer and patient and raise awareness of the condition as well. Ward and Browne (2014) added that “PDNS role is integral in providing quality of life for sufferers”. These psychological impacts can affect Anna’s view on her quality of life, but patient support group such as Parkinson’s Disease Society now Parkinson’s UK may be helpful for her. A study in Brazil between 2011 and 2012 resulted in patients who attended support group had lower depression, anxiety, social phobia and they concluded that PD patients who attended social scheme like patient support group had better quality of life. PD disturbs the movements of the body or motor symptoms thus the goal of pharmacological management is to control this symptom.
Currently there are 18 drugs licensed in the UK for the treatment of PD (BNF, 2002) and these medications that are being used are divided into six categories as evaluated by Coene and Griffiths (2000), first is medication that contains Levodopa, second, medication that mimics the action of dopamine, third, anticholinergics, fourth, amantadine, fifth, medication that lengthens the action of dopamine, and lastly, medication that is used for other disease and condition. Take into consideration that these medications come in the form of capsules and tablets and can also be obtained in liquid form for PD patients who already suffer from dysphagia. Levodopa is the forerunner of dopamine and has been a pillar of treatment for PD since the early 1970s as stated in SIGN (2010). However, one interesting finding as stated by Swinn (2005) was that the symptoms felt and the feedback or effect to drug for the PD patient needs to be custom made. He also argued that in ruling suitable regimen a logical drug essentials will be recommended. Another key to remember, PD is a long-term condition that cannot be cured or stop its progression but with these medications they can do a massive deal for the symptoms and improve the quality of life of a Parkinson’s patient.
In ideal world, patients who are newly diagnosed with PD should be followed up using local shared care protocol every six to twelve months by PD specialist to reassess and enhance the diagnosis as discussed by Aragon et al. (2007) but it did not happen in the case of Anna. The waiting time has been the dilemma for both patients and the health services in the UK over the years. A report from King’s Fund evaluated the NHS latest data for 2017-2018 and showed poor performance against set standard and the data over number of years also indicates a decline across the board. She has been followed up after a year of diagnosis and has had few falls already because of worsening motor symptoms. Anna is now 62 and has been admitted in the hospital with a presenting complaint of frequent falls and swallowing problems. In the hospital, Anna’s mobility has been assessed by Physiotherapist and Occupational Therapist and classified as high risk of fall and has been retrained for safer mobility and independence whilst in the hospital. They also assessed her capabilities in performing her activities of daily living in preparation for her safe hospital discharge. Because of her swallowing problems she was seen by Dietician and Speech and Language Therapist and was advised to eat soft meals only. She has been prescribed with Levodopa and Carbidopa with strict specific timings on when to take them. The rationale in giving Anna and all other PD patients their medications on the right time is because of the “on-off” phenomenon. According to Bhidayasiri and Tarsy (2012) the “on-off” phenomenon is the switch between periods of responding well (“on” period) and responding poorly (“off” period) to Levodopa. Consequently, the “on” period is the time when patient’s motor symptoms are controlled and “off” period when motor functions are impaired. It is the responsibility of the PDNS to closely monitor the “on-off” period of Anna in order to manage medication with the right dosage and with the right time to take them. More importantly, the registered nurse in the ward has vital responsibility as the PDNS in providing high-quality care and treatment for the patient. Registered nurse is the one who often has regular contact with the PD patient and their families or carers and they carry out evaluations and assessments, and makes necessary referrals. Registered nurses are the ones who practice in compassion, maintain dignity and promote health and wellbeing.
Another example of PD intervention is Dopamine pump insertion as mentioned in the literature review, this provides 16 hours of continuous carbidopa and levodopa, but one ethical issue of this method that prevents doctors in prescribing it is the occurrence of infections and other complications. Other intervention in treating PD is through surgery, the insertion of Deep Brain Stimulator or DBS but patients go through rigorous screening assessment and evaluation to qualify for the surgery. With this in mind, most of any medications if taken in prolong period of time, unwanted secondary effect or reaction might eventually emerge. Moreover, pharmacological intervention is the backbone of PD therapy, but unwanted motor and psychiatric complications will sooner or later appear with long-term use of drug treatment. Furthermore, SIGN (2010) has highlighted the review of case reports that patients who were treated with drug therapy (Levodopa) for four to six years have relatively 40% possibility of perceiving motor complications. Some PD patients remain with poor controlled symptoms and with a poor quality of life even with optimal drug treatment, hence, neurosurgical treatment (DBS insertion) is needed argued by Swinn (2005). Then again, he has also argued some complications that might lead to ethical issues like haemorrhage that can induce seizure during the procedure, skin erosion and infection, and abnormal eye movements. Luckily, Anna’s symptoms were well controlled therefore no need of any of that for now. Significantly, mental health is another common issue in PD and many other chronic illnesses sufferer. There is a growing body of literature that recognises that the impact of depression in PD is a significant factor.
Reduced social interaction is another predicament for Anna. She can no longer go out shopping, walking, go to church every Sunday without the supervision of her husband. The same as for her husband, he cannot go where he wants to go as he cannot leave her on her. McComb and Tickle-Degnen (2006) discussed that it is not unusual for Parkinson’s sufferer to isolate themselves or slash down social pleasure due to embarrassment, medication itinerary and the need for additional carer. The PDNS and Parkinson’s UK (a local Parkinson’s group) have encouraged and helped Anna overcome this dilemma. Parkinson’s UK provided information and support for both Anna and her family. Whilst Anna was in the hospital, the multidisciplinary team were actively involved in her care, working together holistically aiming for one goal, putting Anna in the centre of her treatment and minimise the factors that will make her suffer more. She has a long-term condition that needs specific support strategies which will treat Parkinson’s and improve her quality of life in general. Thurman (2013) said in his article “a life with Parkinson’s disease is a life of predictable uncertainty and not every experience of Parkinson’s can be summarised by a single story”. UK has an amazing health services and private and charitable organisations who are willing to lend a helping hand, all the patients need is to be informed and educate them.
