Managing long-term conditions in the community

6


Managing long-term conditions in the community



CHAPTER AIMS



• To introduce the student to the principles of the management of long term conditions within the community, including assessing and anticipating individual and carer need and promoting self-care


• To examine the principles of palliative care referring specifically to the end-of-life care for the person with dementia


• To explore the care of the older adult within the community setting in particular with regards to rehabilitation



Introduction


Nurses who work in the community have the challenge of planning care for a variety of different health needs within a person’s home and other community settings such as the health centre or care home. Care can range from helping people to manage their medication at home, providing long-term condition management services at nurse-led clinics, dressing acute and chronic wounds, to providing specialist palliative care at home. Your community practice experience can provide you with a valuable opportunity to see some of the challenging roles community nurses undertake in order to benefit their local practice population. This chapter does not attempt to refer to every role the community nurse may fulfill but does make reference to some contemporary aspects of care which will enable you to understand and appreciate the variety of care which can be delivered by the community nursing service.



Caring for patients with long-term health conditions


A long-term condition can be defined as an illness of prolonged duration which affects the individual physically, mentally and emotionally and may require ongoing or intermittent support from healthcare services. Such conditions include: diabetes, epilepsy, some mental health problems such as schizophrenia, heart disease, cancer, arthritis, eczema, chronic obstructive pulmonary disease (COPD), asthma and inflammatory bowel disease. The World Health Organization (WHO 2005) defines chronic conditions (long-term conditions) as the healthcare challenge of this century.


Within the UK, it is estimated that clients suffering from a long-term condition account for 80% of all general practice consultations and have an increased risk of being admitted to hospital (DH 2007). Research has also suggested that on-going support to prevent complications or acute exacerbations of illness is limited, care being more ‘reactive’ rather than ‘proactive’.


To facilitate better management of long-term conditions, numerous government policy documents have been published. The Department of Health (DH 2005a) published the National Service Framework (NSF) for long-term conditions and, although this outline focuses on individuals with long-term neurological conditions, much of the advice is applicable to all long-term conditions. In addition to this framework, the Department of Health (DH 2005b) also published a strategy for the management of people with long-term conditions which included guidelines regarding the stratification of treatment into one of three levels according to need:



Using the above categorisation, clients can therefore be assessed for the complexity of their needs and then allocated to the level of care they require. The model provides a framework to assist health and social services to deliver an integrated and co-ordinated approach to the management of long-term conditions.


In summary, effective management of long-term conditions aims to give support and advice to minimise the effects of disease and reduce complications, resulting in a better quality of life for the client. A number of the components for improving care for people with a long-term condition are discussed here and include the holistic assessment of clients, the role of the community matron and case manager in promoting independence in long-term illness, including the promotion of self-care and self-management and the promotion of anticipatory care.



Activity


Reference was made earlier to the assessment of client’s needs. Discuss the possible issues to be addressed in the assessment of a client who is suffering from a long-term condition, with your mentor. Plan a learning goal to achieve with regards to the care of a patient with a long-term health problem and the steps your mentor can take to help you to achieve this.


You may have the opportunity to accompany the district nurse on the first home visit to a client or to observe the practice nurse’s assessment of a client during their first clinic appointment at the health centre. Try to identify with your mentor, your perceptions of the person’s needs and if possible, those of the family members and discuss the plan for care at this stage of their health problem.


You will probably find that the assessment includes such factors as:



You may also have observed how the client’s needs may vary depending on the stage of illness, for example the physical and psychological needs of the client will change over time from diagnosis, returning to stability after an acute exacerbation or adapting to disability.



Assessment to facilitate the management of long-term conditions


To facilitate a holistic assessment of the client with a long-term condition, a variety of different assessment tools may be used such as:



• Nutritional assessment: Eberhardie (2004) makes reference to the utilisation of a Mini Nutritional Assessment Tool for use with older people


• Quality of life assessment tools: referred to by Chamanga (2010) for use by community nurses improving quality of life for patients with chronic leg ulcers.



Activity


Identify, with your mentor, some of the different assessment tools which are utilised in your placement for the management of patients with long-term conditions. Access NICE (www.nice.org.uk), to look at the assessment of depression in adults with a chronic physical health problem or to review long-term conditions self-assessment tools.


Complete some of these available tools yourself – such as the healthy eating assessment tool and fitness test assessment. All health professionals are prone to the same potential long-term health problems such as obesity, heart problems and depression and have a responsibility to ensure that that they are also maintaining a healthy lifestyle. Completing these tools yourself can also give you an insight into how the patient/client can be encouraged to do so and you will be able to help them to understand their meaning in a supportive way.


The following case study is given to demonstrate how more effective management of a client’s long-term condition can facilitate a better quality of life.



Case study



A patient with chronic obstructive pulmonary disease (COPD)


Mr King is an 88-year-old man who lives alone with support from his daughter, who lives nearby. He has chronic obstructive pulmonary disease (COPD) and is partially sighted. He manages to mobilise slowly around the house and a carer visits him in the morning and at night but he has not been out for several years. Over the past 2 years, he has had multiple admissions to hospital often through the local A&E department.


A visit by the district nurse to assess Mr King noticed that he appeared to have developed a pattern of going into hospital; this appeared to happen when his condition worsened, frequently when he experienced episodes of increasing breathlessness and, increasingly, his daughter was away on business. He was encouraged to contact the district nurse when he recognised the early symptoms of not feeling well, instead of ringing for an ambulance. When he did this the next time, he was found to be having a mild exacerbation of his COPD worsened by a chest infection and anxiety, however hospital admission was avoided. He has been instructed to recognise the early symptoms of a worsening of his condition, which includes early identification of possible infection by regular observation of his sputum. He now has a store of antibiotics which he can commence as early as possible, after telephone consultation with the relevant staff within the health centre. He now also attends a day centre 2 days a week, where he enjoys the company and can be regularly assessed to enable early identification of any problems.


This case study demonstrates a move away from a reactive service towards a more proactive one; monitoring patients with a long-term condition even in a ‘well’ phase to identify any early signs of changes which may require treatment.



Activity


With your mentor, identify a patient suffering from a long-term condition who receives regular visits from the community nursing service and, with reference to the proactive measures within the above case study, consider how such actions can be applied to your chosen patient.


So who takes overall responsibility for the management of the team caring for patients such as Mr King? We have considered the immediate professional carer as the district nurse but in many community teams, there are now roles called community matrons, who take on more holistic overarching care roles.



The role of the community matron and case manager in the management of long-term conditions


The district nurse will often be the ‘key worker’ within the management of long-term illness, using her skills of communication, co-ordinating and collaborating with colleagues to draw health and social care together to provide an appropriate holistic programme of care for the patient and family. However, the role of the community matron (referred to in Chapter 2) has also been referred to in the management of patients with long-term conditions.


The community matron has developed skills and competence within the following areas:



Within some community settings, reference will also be made to a case manager who may also be a district nurse or community matron, the case manager specifically manages a caseload of clients with long-term conditions The main responsibilities for this practitioner include identification of ‘high-risk’ clients to proactively manage personalised care for patients and carers. Case management is a method of enabling practitioners to achieve this, identifying those at risk and co-ordinating and collaborating with different care services to enhance the quality of life for patients living with a long-term condition within the community.



Activity


Find out from your mentor if there is a practitioner who is also a case manager for long-term conditions and organise to spend some time with this person to gain further understanding of this role. This can be taken as a Spoke placement or insight visit for those of you undertaking a long placement for the adult nursing field of practice pathway or as an exposure to other fields of practice for those of you pursuing the mental health, learning disability of children’s nursing pathways. Understanding how long-term conditions can impact on families and especially children, who may end-up being the main carer, is important for all students.


An excellent website for considering mental health and wellbeing across all ages can be found at: http://www.nhs.uk/livewell/mentalhealth/pages/mentalhealthhome.aspx.



Promoting independence in long-term illness


The increase in incidence of long-term conditions has resulted in an increase in focus by healthcare practitioners to encourage patients to self-manage their own condition. ‘The expert patient: a new approach to chronic disease management for the 21st century’ (DH 2001b) is a programme to empower people with a long-term condition such as diabetes, to develop their knowledge and skills of their condition to enable effective, appropriate, daily management, prevent complications and generally enhance quality of life. The main objective of this self-management approach is to increase the number of patients with a long-term condition whose condition is improved, remains stable or deteriorates more slowly and who:





Activity


Access the NHS Choices homepage regarding long-term conditions management to gain a further understanding of the advice and support available for patients to self-care. There is a short questionnaire that you can access which tells you if you are receiving the right kind of care and support along with a printed out checklist, available at: http://www.nhs.uk/planners/yourhealth/pages/yourhealth.aspx



Self-care


Facilitating self-care and self-management for the client suffering from a long-term condition is significant and can increase confidence to manage their illness and enable better day-to-day coping. This may result in fewer symptoms or complications of the condition, which results in a generally better quality of life for the patient and their family. With greater confidence in managing their condition, patients are also less likely to require consultations with their GP and are also less likely to require hospital admission, resulting in more efficient use of NHS resources.


A self-management approach involves establishing a relationship with patients based on their health being their responsibility; the healthcare practitioner is supporting and empowering them in their choices, rather than being paternalistic, prescribing solutions to symptoms. This empowering approach necessitates motivating the patient to make lifestyle changes, developing an understanding of their condition and complying with care and treatment.



Activity


The following case studies demonstrate the significance of self-management. Consider these in the context of patients that you have come across during your clinical placement. How typical are they from your experience of caring for patients with similar situations?


Consider their impact on their families and their own health and wellbeing.



Case study



Sarah’s story: Living with an acquired brain injury


Sarah is 35 years old and lives with acquired brain injury and epilepsy as a result of a road traffic accident 5 years ago. She is no longer in paid employment but works part time as a volunteer in the local charity shop. She lives with her husband and her 7-year-old son and with daily help from her mother who lives nearby, she manages to attend to most of the household chores, except for the weekly supermarket shopping, which her husband does with her on a Saturday morning. Her husband takes their son to school every day in the car, however Sarah enjoys walking to the school at the end of the day to meet the other Mums and to collect David.


Sarah’s short-term memory was damaged by her brain injury. However, she has ‘self-managed’ since her accident, which has meant she has been able to ‘get on’ with life and has continued to find ways of living with her short-term memory problems, receiving support from others when required. She has developed techniques to deal with her memory difficulties such as the use of a Google calendar. She takes anticonvulsant medication and has not had a seizure for the last 2 years.


With reference to her condition Sarah says:




Case study



Iain’s story: Living with insulin dependent diabetes


Iain is a 21-year-old, third-year student studying history and politics at university. He lives with insulin dependent diabetes (type 1), which was diagnosed when he was very young, it has always been hard to bring his diabetes into control and as a result has presented him with many challenges; he needs to monitor his blood sugar levels and his insulin requirements on a regular basis. In his first year of study, Iain became very depressed, due to his condition, and his attendance at lectures suffered and may have contributed to his failure to achieve pass grades from his end of semester examinations. He has also felt that his condition interfered with his social life and this resulted in a year out of university to recover from severe depression. He then returned and, with support, continued his studies.


For Iain self-management means being able to control his diabetes, monitoring his blood glucose levels and adjusting his insulin requirements accordingly. He now works part time in the student’s union which he enjoys and he says makes him feel better. He knows what to do now when he feels ‘low’, arranging to meet with friends or family and going out for walks. Iain has also become a ‘buddy’ for new students in their first year of study, helping them to settle into university life.



Self-management


Self-management is empowering, helping put people at the centre of services and in control, providing an opportunity to develop a partnership relationship with different services, to enable quality of life. Sarah refers to the importance of developing knowledge and understanding of your long-term condition which enables you to understand your symptoms and experiences which increases your confidence and ability to manage your condition. David refers to the importance of being able to manage his diabetes and recognising what to do when he feels ‘low.’


Support for self-management involves collaboration between the client and a range of different services. Figure 6.1 identifies some of the support services, initiatives and skills which may be required by the client to facilitate self-management.




Activity


Try to find out what support activities exist to enable patients, with a variety of long-term health problems, to self-care. This may include looking at information given by healthcare practitioners to patients but may also include ‘lay, self-led’ management programmes that the patient may be referred to.


Access the NHS Choices video library on: http://www.nhs.uk/Video/Pages/ for videos on self-care and patients and professionals talking about self-care experiences and management.


Some of you may be fortunate enough to be studying at a university where there has been a significant involvement with both local service user/carer groups and where they also contribute to the delivery of teaching sessions as ‘expert patients’ or ‘carers’. These can make a significant impact in understanding patient’s health and social care experiences, as well as their ‘expert’ view of their own health problem.



The ‘expert patient’


Campling and Sharpe (2006) define the ‘expert patient’ as the patient who is suffering from a long-term illness, who has become quite knowledgeable about the management of their condition. This knowledge is normally the result of gathering information about the causes and possible progression of their illness and by developing an individualised regime of care which has developed from what has worked within their experience of illness. They are therefore ‘empowered patients’ who feel generally in control over living well with their illness and adapting positively to their condition. Healthcare practitioners can assist patients to become ‘experts’ by addressing their information needs as discussed earlier and by giving advice on the possible range of sources of information which may assist in the development of their knowledge regarding their specific condition. Self-management courses provide tools and techniques to assist clients to ‘take control’ of their health and manage their condition on a daily basis. Such courses are designed to develop the client’s confidence, skills and knowledge.



Activity


Try to find out about the provision of local self-management courses within your community practice learning area and the topics which are covered within such courses.


You could also access: http://www.expertpatients.co.uk


Find out from your university the extent to which service users are involved in the programme to share their experiences of living with long-term illness; listening to the patient’s perspective is a very valuable learning opportunity for students.


Many expert patient programme courses are delivered by trained tutors who have also had experience of living with a long-term condition. Courses can include subjects such as managing pain and tiredness, coping with depression, learning to relax, adopting a healthy lifestyle, dietary advice. The expert patient website: http://www.expertpatients.co.uk, offers advice on a range of chronic health conditions such as asthma, arthritis and diabetes.



Anticipatory care


There is now substantial evidence which indicates that many crises situations within long-term illness can be prevented. Anticipatory care focuses not only on the client’s current health status but, also on proactive management, considering the avoidance of problems and emergency situations in the future. This requires contingency planning, making a plan to facilitate the future management of a possible complication and individual plans of care for acute episodes of illness. Although the term ‘anticipatory care’ is currently mostly associated with long-term conditions and contingency planning, there are a variety of proactive and preventative actions taken by healthcare professionals within different aspects of care and include activities such as:



Anticipatory care within the management of long-term illness is carried out during routine consultations and deals with ‘today’s’ problems but also assesses potential problems. This can result in a number of benefits for the patient and healthcare provider and include:




Activity


Find out more about the national anticipatory care programme from NHS Health Scotland: www.healthscotland.com/anticipatory-care.aspx


Kennedy et al (2011) argue that community nurses are appropriately placed and have the relevant competencies and skills to anticipate care needs which help the patient to self-care and prevent or detect potential problems at an early stage. Patient assessment by community nurses often include anticipating care needs, which enables the patient to remain well at home. Community nurses often work with frail patients who are suffering from a variety of health problems and within the holistic assessment of such a patient, potential care needs can be identified. Practice nurses managing clinics for specific medical conditions are also involved with patient education which enables anticipating care needs. Anticipatory care interventions can include simple measures such as giving the patient with chronic obstructive pulmonary disease specific instructions to be able to identify the early stages of chest infection to initiate early treatment.



Activity


Using the definition above of anticipatory care, reflect with your mentor on the anticipatory needs of a number of patients with a long-term condition who you have encountered while in your community practice placement.


On the next visit to a client, where you can undertake their first assessment, identify and discuss their possible anticipatory needs and the appropriate interventions to meet these. Make a plan of action to meet these needs and discuss them with your mentor. This will enable you to develop the problem-solving and critical thinking skills essential for a graduate nurse (NMC 2010).



Different nursing services in the management of long-term conditions


The different roles of community staff are discussed within Chapter 2 of this book, however it is useful to consider these roles with specific reference to the management of long-term conditions.



Activity


Before continuing with reading this chapter, re-visit Chapter 2 and read about the different roles in practice.








The role of the community pharmacist


Many patients with a long-term condition may require quite complex medication regimes, which should be reviewed regularly to assess drug effectiveness, adverse side-effects and patients’ medication regimes; ensuring they receive the maximum benefit from their medication. The GP plays a key role in regularly reviewing any non-compliance issues, while at the same time, ensuring the minimum of side-effects. To assist with this, clients can review their medications with the community pharmacists; a medication use review (MUR) consultation with the pharmacist can provide the client with the opportunity to further their knowledge about their medication regime and ask any questions in relation to this. Chapter 11 provides a comprehensive introduction to all aspects of medication review.



Carers


Within your community learning experience, you will meet a number of informal carers; this could be someone caring for an elderly relative, looking after a child with a disability or supporting a partner who is ill or suffers from a mental health problem. Every year many family members and friends become carers; informal caregivers generally have received no formal training and normally receive no significant financial reward for this difficult and demanding job. Many informal carers provide care on a full-time basis, some carers are very young, i.e. children looking after parents, and some carers are caring for more than one person.



Activity


Access the following website to read some of the stories of how young carers can be supported: www.barnardos.org.uk. The Macmillan website: www.macmillan.org.uk also provides support and advice for young carers caring for someone with cancer.


It may be possible for you to visit one of these organisations to find out how they link with young carers and those that they care for. Some of you may meet young carers as part of your curriculum timetable involving engagement with service users and carers.


Being in the community and engaging in visiting people’s home will also bring you into direct contact with carers of all ages. The carer’s role is often demanding and meets numerous challenging demands. Carers carry out a number of responsibilities, which will often include giving, at times, quite complex daily physical care and emotional support; their role, however, differs from the role of the professional carer in a number of ways. Normally, family carers receive no financial payment for their services; it is difficult to take any leave away from their responsibilities and it may be that they were never really consulted about their wish to care but it has been assumed that this is their role as partner, parent, daughter or son. Care giving may have to be balanced with work and other family responsibilities and is further complicated by the unique, special relationship that care giving takes place within. Carers may also feel socially isolated, never getting any break from caring.



Activity




The following case study demonstrates the possible experiences of carers:



Case study



Christine and Tom (a patient who suffered from multiple sclerosis)


Christine cared for her husband Tom who suffered from multiple sclerosis (MS) until his death last year. They were married in 1984 and 2 years later Tom was diagnosed with MS at only 29 years old. Over the next few years, Tom experienced several relapses, which resulted in early retirement from work. Tom and Christine moved to a bungalow with a purpose built extension and tried to live a normal married life. Christine attended to most of Tom’s everyday needs such washing, dressing, toileting, lifting him, with the help of a hoist into his wheelchair; this was all on top of the general housekeeping duties such as cooking and shopping. As Tom found it increasingly difficult to move, Christine got up four to six times during the night to help change his position and make him more comfortable. During this time, Christine could not go out very much, which frequently made her feel quite depressed and the demands of care made her feel permanently exhausted. She also worried a great deal about the future; what would happen to Tom if she became ill or her ability to cope when he died. It was also difficult to be unable to make any future plans, not knowing how Tom was going to be and wondering if his condition would change. She also at times grieved for the lost opportunity to have children; they decided not to have children at the time of his diagnosis.

Related posts:

  1. Practice learning in the community: what to expect
  2. Developing competence for person-centred nursing in the community
  3. Medicines management in the community
  4. The context of community nursing

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Feb 19, 2017 | Posted by in NURSING | Comments Off on Managing long-term conditions in the community

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