Long Term Conditions
The aim of this essay is to consider approaches to promoting the self-management of a long-term condition. The focus will be linked to module content and based on a patient that I have provided nursing care for during my clinical practice. There will be a brief introduction of the patient and the context in which I was involved in their nursing care. The pathophysiology of the chosen LTC along with the related physical, psychological and social needs of the patient will be considered. There will be a discussion of principles of self-management that will link to national LTC policies.
This will also include initiatives and analysis of the evidence of the underlying principles for an approach to providing self-management support, for the chosen LTC, including benefits and challenges. To conclude I will use evidence-based recommendations of how the patient could be supported to self-manage their condition. A wide range of evidence will be used to support my discussion. The patient chosen to explore, is one who lives with the LTC of Parkinson’s. The patient had started to experience Motor Fluctuations, also referred to as “off “ periods.
Motor Fluctuations are associated with long-term use of levodopa and usually appear in people who have had Parkinson’s for some time, patients experience “end-of-dose deterioration” meaning that the dose does not last until the next dose is due (Parkinson’s. org 2008). This patient spent one week on a neurology rehabilitation unit. The context in which I worked with this patient was to assist with the teaching of an apomorphine syringe driver and to assess “on and off” periods before the use of the pump and then when the pump was in use and also to ensure that there were no side effects to its use.
During this week I worked alongside a team of occupational therapists and physiotherapists, as it was essential that the patient regained confidence with daily activities, personal cares, dressing and food preparation. The aim of the teaching was to enable the patient to become independent with the apomorphine pump from being able to perform a subcutaneous injection to its removal when medication had finished.
It was vital that the patient became competent and confident in the process as they had been very active throughout their life and wanted to remain so for as long as possible. Parkinsons. org (2010) describe Parkinson’s as the disease with no obvious cause and is the most common form of Parkinsonism; the other forms of Parkinsonism are vascular, Drug-induced Parkinsonism, dementia with Lewy bodies, inherited and Juvenile. Vascular is an uncharacteristic form of Parkinsonism and usually presents with difficulties in speaking, swallowing and the ability in making facial expressions.
Drug-induced Parkinsonism occurs in 7% of people and is attributed to neuroleptic medication which block dopamine these drugs normally treat schizophrenia and other psychotic conditions and once the problem has been diagnosed then the person will recover in hours, days or months after ceasing taking the medication. Dementia with Lewy bodies has no cure and symptoms include difficulties with concentration, memory, language and the ability to carry out straightforward actions. Many people suffer from hallucinations, sluggishness of movement, rigidity and tremors.
Dementia with Lewy bodies is similar to Alzheimer’s. Inherited Parkinson’s is rare and there is no evidence that is can be passed on in families, however it is estimated that 5% of people with Parkinson’s may have a genetic cause. Juvenile is a term used for persons diagnosed under the age of twenty years. As NICE clinical guidelines 35 (2006) states, Parkinson’s disease is a progressive neurodegenerative long-term condition and mainly affects those of middle to old age. Parkinson’s occurs when the cells containing dopamine die off.
At present there is no consistent test that can define if a patient has Parkinson’s due to the close clinical resemblances of other conditions. Parkinson’s is diagnosed mainly through history based information and examination. The main symptoms and signs of Parkinson’s are bradykinesia, rigidity and rest tremor. Parkinson’s is mainly seen as a movement disorder, but other areas of health problems are associated with it. These include depression and dementia along with autonomic disturbances and pain, although considered to be rare they can present at a later stage of the condition.
These rarer symptoms, as they progress, can lead to substantial disability and handicap which harms quality of life for the person living with Parkinson’s, this also has an impact on families and carer’s. The physical symptoms of Parkinson’s can be debilitating for the patient and may include pain, falls/dizziness, dietary problems, bladder and bowels problems, swallowing and saliva control, speech/ communication problems, eye problems, freezing, skin, scalp and sweating problems. It is not possible to discuss all of these physical elements in detail within this essay.
I therefore intend to focus on one specific physical aspect of the disease and discuss how this affects the client’s needs, along with the psychological and social aspects. The area I will discuss is freezing. As identified by Parkinson’s. org (2010), freezing will be experienced by every Parkinson’s patient at some point, but becomes more apparent in patients who have had Parkinson’s for numerous years and also if levodopa has been used for long periods of time within their treatment, however it must be noted that freezing can occur in Parkinson patients whom do not take levodopa and should not be seen as a side effect of taking levodopa.
When freezing occurs it is a frightening experience and also a cause of embarrassment for the individual. Freezing is not just linked with gait movement it also includes speech freezing or repetitive activities such as combing hair or the thought process for example when a patient is trying to remember something i. e. the name of a place. Along side this is also ‘start hesitation’ this is associated with drinking from a cup, getting out of bed or when a patient wants to step forward.
Freezing is still not fully understood and may be attributed to interruptions to the sequence of movement, group situations or ineffective medication. Parkinson’s brings many social problems, becoming less confident can bring low self-esteem that can lead to withdrawal from social activities. The individual may worry about how they look, talk or even the way they move, this can inhibit the person from entering into normal activities and they may decide to stay at home to avoid potential awkwardness.
Reduced socialisation may increase the likelihood of the individual suffering from depression; fatigue and mood swings can be potentially be harmful to personal or close relationships. The individual may become unsure of their social position within the family, workplace or any groups, as they feel lost or less important. Self-management of a LTC is strategically important to the long-term sustainability of the NHS, and it is therefore essential to be clear on the principles of self-management and to have a clear approach to achieving a successful outcome.
In response to the increasing levels of LTC’s across England the Department of Health (2012) have established a dedicated LTC team who has built a compendium to explain why pro-active management of LTC’s is so important to the future of the NHS. This compendium provides compelling evidence and information to help support and drive a transformational change to the way in which LTC’s are managed, and the document states clearly that self-management is central to this transformation, the principles of self-management have been outlined by the Health Foundation (2011) and these will now be discussed.
Self-management can have very positive effects on people who live with a long-term condition that affects their normal function of daily activities, as The Health Foundation (2011) suggests the use of self-management can have positive effects on behaviours and outlooks that an individual faces and how their quality of life can either be enhanced or depleted. In order to achieve a successful self-management outcome it is essential that time is invested early in the programme to explain to the individual involved the many benefits that self-management can bring.
Ensuring that they fully understand these benefits will greatly increase the likelihood that they fully engage into the programme and truly take an increased responsibility for managing their LTC. Evidence suggests that self-management leads to a more positive health outcome and championing people to look after themselves can improve motivation, engagement and how they use and access the health service. It also describes to how habits change towards healthy eating and exercise, which results in better clinical outcomes.
Failure to establish genuine engagement at an early stage will most likely result in limited transfer of responsibility and may lead to the patient failing to realise the benefits to themselves and also benefits to the NHS. They also stated that there is an extensive range of initiatives and one size does not fit all. As Brighton and Hove City PCT (2006) state, planning and having a certain level of power is crucial to making lifestyle changes when living with a LTC.
It is also necessary to understand the connection of why changes to lifestyles need to be made, and why planning carefully for change is fundamental to change actually being accomplished. It is important to support the individual through the change process as this can often create a degree of anxiety for them. Promoting the benefits of a healthy lifestyle and educating individuals on their condition, will boost confidence and help the patient understand the benefits of self-management in the context of potentially slowing down the progression of their condition, improved quality of life and remaining independent for as long as possible.
Education is another key principle of self-management. An individual needs help and support to understand their condition, how it affects them and what they can do to help to pro-actively manage it. There are a number of options available here to help educate an individual on their LTC such as reputable websites specifically set up for their condition. They are an excellent source of information, which is continuously updated, and enable the person to access easy to understand information in the privacy of their own home.
Additionally, advice helplines add greater support for individual needs, without being confrontational. Support is also available for carer’s through courses run by the Expert Patients Programme Community Interest Company (EPP CIC). Leaflets are available to answer basic questions and give further information on where to find more support and advice that is available in their area. The Parkinson’s Specialist Nurse is also a good resource as the nurse can provide their expertise along with the expertise of multi-disciplinary teams (www. parkinson’s. rg 2012) It is important to ensure that the level of education and training provided is appropriate to the capability of the individual and also the state of their condition. Insufficient information could lead to poor decision making by the individual or a lack of confidence if they are uncertain about certain aspects of their condition. Similarly, providing training and education beyond the means of the individual may result in confusion or unrealistic expectations being established – this would not be beneficial for either the individual or the NHS.
Good training and education should be targeted at increasing the individuals understanding of their condition such that they are able to successfully monitor their symptoms and take appropriate, pro-active action to ensure treatment is sought quickly and to avoid potentially unnecessary admissions to hospital. One of the principles of self-management is to ensure sufficient emphasis is placed on problem solving. If an individual is to become increasingly capable of self-managing their LTC then an ability to solve problems is fundamental to achieving this.
Without this it will prove difficult to change the behaviours necessary to allow a health care professional to move into a more supportive and assisting role, as oppose to the current situation where they are managing the care of the individual (Health Foundation 2011). Another area for consideration is that a patient must know when to seek medical advice and intervention and feel comfortable with their decision-making techniques. It is also vital that the individual does not allow a situation becomes acute.
The Health Foundation (2011) also states that, engagement and education are important to ensuring that the individual is ready and in a position to be empowered with the responsibility for the self-management of their LTC. The principles of self-management support the involvement of the individual in decision making related to their care and also working collaboratively with their health care professionals to build their care plans.
This continuous high level of involvement is essential to making sure that there is a real transfer of responsibility from the health care professional to the individual – if there is, then there is a much greater chance that they will take ownership for the long-term self-management of their condition. Failure to truly involve the individual when making decisions about their care could result in a lack of commitment to a care plan and/or false commitment to behavioral changes, ultimately resulting in the continued heavy reliance on their GP, A&E and other health services to manage their LTC in a reactive and cost inefficient manner.
As Randall and Ford (2011) discuss, it is apparent that within the United Kingdom there is an increased transfer of power and choice for users of the health and social care system and policy drivers such as ‘Independence, choice and Risk’ (DH2007) recognise the importance of empowering service users i. e. persons with LTC’s, to ensure they have greater choice and control. When empowering someone, firstly there needs to an acknowledgment that the person has control over an aspect of their care and can make decisions that relate to it.
Power can be seen in a variety of forms but is normally defined as having knowledge and being able to make informed decisions and choices. When considering the decision process it is evident that some decisions are taken alone, for example what clothes to wear, or with permission of others for instance using monies from a joint account to buy a new kitchen and there are also decisions that are made which require formal consultation, e. g. implementing a new law. For any individual who is involved in the self-management process it is important to ensure that the degree of decision-making is appropriate to their personal set of circumstances.
When empowering a person there are fundamental considerations to be identified. For example, the mental state of the individual, the extent to which their condition has progressed, their physical ability, their socio-economic situation, the extent of their support network (friends and family), their willingness to pro-actively engage in the self-management of their condition – all of these factors may influence the rate and extent to which empowerment may be achieved.
Furthermore, empowering an individual with a long-term condition needs to be managed carefully. They will typically be interfacing with many different healthcare professionals and other parts of the NHS and other organisations, and if the views, opinions and approaches of those multiple contacts are not aligned or consistent it is possible this could have a negative impact on the empowerment process for the individual. It is therefore essential that there is one aligned approach and cohesive message.
There is strong evidence contained within the study by Luca Camerini et al (2012) that empowerment, combined with health knowledge have been shown to have a great impact on the self-management of chronic conditions, and that if managed well they can have a positive effect on health outcomes. For my chosen patient suffering with Parkinson’s disease, I would recommend supporting them to self-manage through an approach of empowerment, ensuring that this was strongly underpinned by strong support in the provision of health knowledge.
As discussed earlier, some of the key needs of an individual suffering with Parkinson’s disease are related to their mobility, dietary requirements and pain relief and I want to explain how this recommended approach could help support the individual to more successfully self-manage these particular aspects of their condition. Firstly, in respect of mobility, freezing is often a situation, which affects PD’s sufferers. In the first instance it is important to help educate the individual on why freezing happens.
Ensuring that the individual has a clear understanding of their condition will help them to be more accepting of the effects, less afraid when they experience motor fluctuations or “off” episodes and crucially help them to make more informed decisions about potential ways of helping them to self-manage this aspect of their condition. As mentioned previously, the extent of knowledge and education needs to be appropriate to the individual’s level of health literacy – this aspect should not be underestimated, as there is a strong link between an individual’s level of health literacy and their ability to successfully self-manage.
As stated by the World Health Organisation (2009) health literacy is critical to empowerment, therefore this can present a barrier to achieving self-management through an empowerment based approach. An individual’s capacity to access and effectively use information is an area that may need to be considered initially to decide if empowerment is the most suitable approach to adopt. There are a number of options available to help an individual manage motor fluctuation episodes such as medication, mental techniques and physical techniques.
Again, the individual will need to be educated on these such that they are able to be involved, or even lead, the decision making process on selecting the most appropriate treatments and solutions for them. Each root may have both advantages and disadvantages for the individual and these need to be made clear, if a patient is aware of the limitations and potential drawbacks of a specific treatment from the beginning, then they are more mentally prepared to deal with the challenges as they arise, educing the likelihood of failure. There are several approaches to providing education and support to Parkinson patients; the LTC compendium recommends the Expert Education Programme, although not specifically for Parkinson’s it provides courses to help with managing LTC conditions, online courses are available also, it is also possible to add your area to the list, they are free. The Parkinson’s website has vast information both practical and informative and free help lines.
In some areas there are Neuro-rehabilitation Units, available through referrals made by the Parkinson’s specialist nurse or consultant, which gives access to multi-disciplinary teams all located within one centre. The Parkinson’s Specialist Nurse holds clinics where discussions can take place for planning the future, medication changes and a point of contact if you need additional support before the next scheduled appointment.
As part of the Health Foundation Co Creating Health programme (2012), a ‘Buddies to Support Self Management’ scheme has been developed for cancer patients in the Arran and Ayrshire region. The programme has been developed to enable patients who have completed self-management programmes to share their knowledge and skills with others in similar situations, along with helping patients who prefer not to be in a group situation. This could be a possible area to develop for Parkinson’s or all LTC patients.