This essay explores and reflects on the lived experiences of an elderly patient living with the long-term condition (LTC) of psoriasis. A case study is used to illustrate some of the key features of LTCs and the impact they can have on a patient’s physical, psychological and social state. It is also going to be looking at the effect some of the key features can have on a patients support network or family. In addition it will examine the nurses role in the management of LTCs and the health and social policies that may have an impact on the care received by patient with LTCs.
The Department Of Health (2009) describes long-term conditions as chronic illnesses that can limit lifestyles. In England two in five adults say they live with a LTC (Ipsos MORI 2009,p. 5). Examples of LTCs include Chronic Obstructive Pulmonary Disease (COPD), diabetes and heart disease. Unlike acute illnesses such as; ear infections and pneumonia, chronic illnesses don’t have a cure but there are treatments available to help manage them. LTCs are complex and patients that suffer with a chronic disease are likely to have more than one chronic condition (Department of Health 2009, p. ). The complications associated with LTCs can effect daily life and make activities of daily living (ADL’s) difficult. For example a person suffering with psoriasis may also have psoriatic arthritis (caused by inflammation of the joints) that can reduce mobility due to pain and discomfort, making walking to the kitchen, to make a cup of tea, a lot harder. People can suffer with chronic illnesses for decades. Due to this they become intensive users of the National Health Service accounting for 80% of general practitioners consultations. 0% of hospital in patient beds and 40% of outpatient appointments [Office of National Statistics, 2002. ] This has a huge impact of the primary and acute care budget. The Department of Health estimates that the treatment and care of people with LTCs uses up to 69 percent of these budgets. It is important to understand all of the aspects of an LTC to improve the quality of care given by the health care service. It is also important to consider that patients living with a long-term condition have a vast knowledge of their illness and this knowledge is key in promoting well-being and self-care.
In accordance with the Data Protection Act (1998) and the Nursing and Midwifery Council (NMC) code of conduct, on patient confidentiality, for the purpose of this case study the service user involved will be referred to as Anna. Anna has given the author her consent for her case to be used within this study. Anna is an 89-year-old female who lives alone. Anna has suffered with the long-term skin condition of psoriasis since her early twenties. Anna also has hypertension and she has been battling with depression since her late twenties. Psoriasis is a chronic, non-contagious autoimmune disease that affects the skin and joints.
It appears on the skin as inflamed, red, scaly patches (Nation Psoriasis Foundation 2009). These patches are the result of rapid skin cell growth caused by overactive T-cells releasing inflammatory chemicals and acting as if healing a wound (The Psoriasis Association 2008). Psoriasis can cause the skin to become very irritated and itchy. Psoriasis also requires the skin to need a lot more maintenance monitoring to prevent any further breakdown. Psoriasis has caused Anna many problems since she was first diagnosed that have had a massive impact on her experience of life.
Anna’s condition is extremely severe and plaques of inflamed skin cover her from head to toe. Having visibly intensely inflamed, itchy skin cause Anna many physical, physiological and social problems. The physical problems caused by Anna’s psoriasis are pain, caused by the sensitivity and rawness of her skin, and severe itching, caused by the excess skin production. She also suffers from pain caused by psoriatic arthritis that has reduced her mobility. These features of Anna’s condition had a knock on effect on other aspects of her life.
They brought forward new issues in her social life and in her psychological needs. Lorig et al (2006) discuss the concept of The Vicious Symptom Cycle. This is where the chronic illness, in this case psoriasis, can produce pain and fatigue but the disease itself is not the only cause. These symptoms can add to and make other symptoms a lot worse. For example pain can cause depression (Christensen and Antoni, 2002, p. 168) and depression can lead to fatigue (Lorig et al 2006). Anna’s skin irritation and pain disturbs her sleep causing her to suffer from fatigue and a lack of motivation.
The irritation disturbs her sleep because her skin is very sensitive and fragile making it hard for her to sleep comfortably. In addition to this her skin is very damaged and broken down so as part of the Turnaround project that takes place in the hospital she was admitted to Anna needed to be turned and put in a new position every hour, with the help of ward to staff, to prevent pressure sores. In Anna’s case the appearance of psoriasis on her skin was very noticeable. This had a huge affected on her self-esteem. Anna was very self-conscious about the way she looked and tended to isolate herself from other patients.
In discussion with Anna about her condition she expressed that when she was diagnosed with psoriasis she started to lead an extremely isolated life. Anna shut herself away in her home and only left to buy her shopping, but this task at times was to stressful for her. Anna lacks a positive self –image, which has affected her self-esteem for a very long time and contributed to her leading a very isolated lifestyle. Anna was diagnosed with depression as her psoriasis worsened. Her depression has been caused by a combination of isolation, low self-esteem and persistent pain and fatigue.
Losses experienced by people living with an LTC can include self-esteem, independence, and confidence (Community Interest Company 2007, p. 250). As Anna’s mobility reduced she started having difficulty with ADL’s. She found it hard to wash and needed walking aids to help her move around her home. Anna’s daughter visits her everyday to help her with washing and dressing. Whilst in hospital Anna and her daughter were discussing the possibility of Anna moving in with her daughter as she was starting to need more and more assistance. These discussions were influenced by her reduced mobility.
Anna’s LTC has affected not only her life experience but her families too. As Anna has got older she has needed extra support from her family to help manage her treatment and care. Due to socio-demographic changes in Britain there is a larger number of elderly people in the population. This aging population has called for families to be more involved in treatment and therapies of those living with an LTC (Payne and Ellis-Hill 2001, p1-13). When Anna was young she was able to apply the cream and ointments, used to treat her psoriasis, herself.
But as her mobility has reduced with age and psoriatic arthritis she has needed assistance with applying the creams to the lower half of her body and her back. Anna’s family has had to adjust their lives to incorporate her chronic illness. This has required a need to educate themselves in her treatment and the best ways to support her to self-manage her condition. Anna’s life experience has been significantly affected by her LTC. Due to her condition she lead a life of isolation, reduced mobility and slowly reduced independence. Hogston and Marjoram (2007) state that an individual’s health is dependant on five different aspects of life.
These are environmental, social, organisational, political and spiritual. Everybody’s lifestyle factors and circumstances are unique to them. Therefore each individual experience of living with a LTC is different. In contrast to Anna case a 39-year-old male living with psoriasis leads a very different lifestyle. For confidentially reason he will be refereed to as Mr. B. Mr. B has lived with his skin condition for over ten years. The patches of inflamed skin cover his knees, elbows and hands. His life experience has been different from Anna’s because his circumstances are different.
He is a lot younger and doesn’t have any other LTCs related to psoriasis such as, diabetes mellitus, heart disease, hypertension and depression (National Psoriasis Foundation, p. 4). Mr. Bs social circumstances are also very different from the Anna’s. Mr. B has a very good support network and leads a social, active lifestyle, unlike Anna’s who has reduced mobility. Mr. Bs psoriasis is less visible than Anna’s and this could be one reason why he leads and more social life. Also dissimilar to Anna, Mr. B has a positive self-image and good self -esteem levels.
Depression Help Spot (2009) state that women are more likely to get depression then men. This could also play apart in their different experiences. All of these factors show that no two cases are the same. Each individual has their own unique medical history and environmental factors which have an influence on their experience of living with an LTC. It is important to consider all of these influences when trying to provide supportive good practice and patient centered care. In 2000 the government brought in a new strategy to help to improve an reform the NHS.
The aim of the ‘The National Health Service Improvement Plan” was to modernize the services provided, confront under funding, raise hospital standards and focus more on patient centered care [Department of Health, 2000. ] Standard One of “The National Service Framework for Long Term Conditions”  calls for all healthcare professionals to deliver patient centered care. Patient centered care is a key objective within health care and lies at the heart of many policies aimed at improving personalized care, such as “Our Health, Our Care, Our Say, [Department of Health, 2006] and High Quality Care for All” [Department of Health, 2008. ‘Our Health, Our Care, Our say’ has also been put in place to promote the idea of self-management and to encourage self-care. The White Paper committed the Department of Health to promote well-being, focus on prevention and early interventions, and do more to support patients with LTCs to self-care and to design services to fit each individuals needs (Department of Health 2009, p3-4). The Royal College of Nursing  defines patient centered care as care that is effective, safe, promotes health and well-being and helps to integrate patients into the community.
Patient centered care is an approach with healthcare that integrates patients ideas, beliefs, cultural needs, values, expectations, emotional needs and social perspectives whilst at the same time maintaining mutual participation in shared decision making [Anati-Otong, 2006; Goodrich, 2009. ] The NMC Code of Conduct (2008) discussed how nurses need to respect patients’ preference and take their surroundings, values and belief into consideration when working with patents to choose the best path of treatment for them and providing patient- centered care and supported self care.
The Nursing and Midwifery Council (NMC) specify that to work in good practice and follow the code of conduct, practitioners must: Recognise and respect the role of patients and clients as partners in their care and the contribution they can make to it. This involves identifying their preferences regarding care and respecting these within the limits of professional practice, existing legislation, resources and the goals of the therapeutic relationship (clause 2. 1) (NMC, 2004b).
Supported self care refers to the patients ability to manage the symptoms, treatment, physical and psychological problems and lifestyle changes that can come with living with a long term condition [Kozier et al, 2008. ] Patients with LTCs need support with living with and coping with their illness. Working alongside and developing the patients knowledge encourages them to become the primary decision makers in the treatment of their illness and become the expert patient. The Community Interest Company (2007) describes the expert patient as someone who is taking an active part in positively managing their LTC.
They are people who work to minimisme the symptoms and side effects of their illness. Giving patients the confidence to self-manage the illness can reduce the severity of symptoms, decrease pain and improve life control and activity (Department of Health 2009, p. 7). It is essential that they become key decision makers in their care. Becoming the key discussion maker allows patients to work in an equal partnership with professionals. This enables both parties to combine their knowledge to achieve the best possible outcome and improve the patients’ quality of life.
Working together also helps to make the health care services more efficient and effective. The self-management schemes put forward by the Department of Health benefits the patient and the NHS. It helps to delay or prevent the need for hospitalisation, enabling the patient to stay at home and lead an active life and reducing emergency admissions, where the care costs more money (Department of Health 2004, p34-35). Self-management is seen as a vital part of the system of care provided to people living with LTCs and can be implemented through the implementation of expert patient programs [Department of Health, 2001, Davidhizar, 1998. The Expert Patient Programme (EPP) found that 47% of patients that had taken part felt more confident that they wouldn’t allow common side effects of LTC’s such as, pain and shortness of breath, interfere with the way they lead there lives (Community Interest Company 2008, p. 4). This confidence allows patients to live the active healthy lifestyle that they choose and not feel bound by their illness. It also enables them to have a choice in what treatments they have and where they have them. Meaning they can receive treatment nearer to their home.
The findings form the EPP support the ‘Our Health, Our Care, Our Say’ initiative, showing that working alongside patients can improve their quality of life. The EPP also showed that self-management and care can reduced the number of A&E attendances and reduce the amount of GP and outpatient visits (Department of Health, 2007). A reduction in these visits and attendances is the outcome of promoting well -being and educating patients on early intervention and the prevention of illness. Self-care needs the involvement of many different areas and professions to make it effective.
The areas essential in making it work are personalised care planning, up-to-date care plan records and readily available information. The DoH Guide to Self-care (2009) explains that personalised care planning focuses on all of the individuals needs and works at setting achievable goals for the patients to work towards. They also discuss how important it is that patients and carers receive relevant and timely information to help support them. Care plan records need to be kept up-to-date so that professional and patients have all the information, on their progress and treatment, available to look back on and work on.
Care plans are a key communication tool used by health care professionals when to working together in a team to provide the best possible care for individual patients. Records also need to be kept up-to-date to keep in line with the NMC code of conduct: Health care records are tools of communication within the team. You must ensure that the health care record for the patient or client is an accurate account of treatment, care planning and delivery. It should be consecutive, written with the involvement of the patient or client wherever practicable and completed as soon as possible after an event has occurred.
It should provide clear evidence of the care planned, the decisions made, the care delivered and the information shared (clause 4. 4) (NMC, 2004b). NHS Kirlees (2009) self-care support model highlighted that a range of professionals will be involved in the development of effective self-care. The modeled showed there would be input from GP’s, pharmacists, occupational therapist, hospital clinics and many other health care services. Patients with LTCs will need the input from all of these different professions over time, to make sure that all their needs and goals are being fulfilled.
Professionals’ input will also help to prevent hospital intervention and help to maintain good health. These support networks enable Anna to improve her quality of life. She is able to work with health care professionals and choose her course of treatment. The schemes also enable her family to be involved and make a positive impact on her care. Being provided with extra knowledge on support groups and day centers in her local area she is able to improve her health and life needs. These policies allow the patient to become more involved in their care and feel able to express their views and opinions and have them acted upon.
In addition to this nurses are then able to provide care that the patient wants whilst respecting the values and beliefs. Being more involved in their care has a great impact on the care patients receive. It makes care a lot more personalised and allows for differences in each case. These policies work on the basis that everyone is an individual and therefore have different social and medical needs. There are many different professions involved that help to provide support for each individual’s social, physical and psychological well-being.
Self-management is also about increasing a patient’s knowledge, giving them the information they need to make positive informed choices on their treatment. It is also there to supply families and careers with appropriate information. This gives them the knowledge they need to understand about what the patient is feeling and going through. Enabling them to give the support and help. The self-management policies and procedures are also valuable to health care professionals. They provide guidelines to follow and reflect on in practice to make sure that they are providing the most appropriate care for each individual.
It also gives nursing staff the opportunity to educate themselves on the complication of living with an LTC. In conclusion, it is clear that the main role of all health professionals requires them to have vast knowledge and understanding of issues and policies to help them support their patients. It also requires knowledge of interprofessional and multidisciplinary working. Furthmore it also requires a high level of communication and assertiveness. Health professional need to have knowledge of health delivery systems and policies to enable them to provide their patients with an efficient and effective service.