In the department of health publication from ‘Vision to Reality’ (2001), the minister for public health, Yvette Cooper, and the chief medical officer, Professor Liam Donaldson, stated the following:
‘At the beginning of 21st century, your chances of a healthy life still depend on what job you do, where you live, and how much your parents earn. This is unfair and unjust. That is why this Government is committed to narrowing the health inequalities that scar our nation and to improved health for all’.
How does this statement support the elderly with Parkinson disease in Bromley trust Kent?
The focus of this community study is to explore the health inequalities which affect a specific group within Bromley community. This group has been defined as those suffering with Parkinson’s disease, a degenerative condition that tends to affect an older client group and can also be associated with complex medical needs. This essay will define and explore the concept of inequalities in health, define the disease ad its effects on people as their families, and relate these to a community in the Kent area served by Bromley NHS Trust.
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The other aim of this essay is to postulate solutions and interventions which might address some of the health inequalities and challenges posed by this particular condition and its prevalence within the community. The literature points to the specific health problems and challenges of this client group, and there is government and governance literature which specifically addresses their needs. However, it appears there is still a deficit between the needs of clients, which are complex and difficult to address, and the level of provision in health and social care services, which continue to be under-resourced and less than ideally designed.
Parkinson’s is a progressive neurological disease which occurs as the result of the loss of nerve cells in the substantia nigra in the brain (PDS, 2007). The lack of these cells results in a lack of dopamine, a substance that allows messages to be sent to the parts of the brain that control movement (PDS, 2007). When about 80% of dopamine is lost, symptoms start to develop, and levels continue to reduce over time, causing symptoms to increase (PDS, 2007). Two proposed causes are genetic disorders and environmental toxins (PDS, 2007), although a range of other associations continue to be explored. No real cause is known, and there is no known cure, although some medications can mediate the course of the disease and help in symptom control (PDS, 2007). Motor symptoms of Parkinson’s are tremor, bradykinesia and stiffness of muscles, while non-motor symptoms include sleep disturbance, constipation, depression and urinary urgency (PDS, 2007). Fatigue is another symptom (Lloyd, 1999). It is obvious from this range of symptoms that sufferers may need an increasing range of health and social support services and interventions during the progression of the disease.
One epidemiological review puts the rate of Parkinson’s disease in the UK population at 19 per 1000 per year, with a lifetime prevalence of 2 per 1000 people (MacDonald et al, 2000). The Parkinson’s Disease Society (PDS, 2007) state that one in 500 people in the UK suffers from the disease. This would suggest a considerable burden on local health and social care services in any locality. However, there is also the issue that such statistics often only represent the tip of the iceberg (MacDonald et al, 2000). There may be a greater number who have not yet been diagnosed or who do not access services and so are not counted in surveys. The age range of sufferers of Parkinson’s disease is 40-90 years, with the greatest proportion in the 70-74 age group, and the next highest rate in the 74-79 age group (MacDonald et al, 2000). This is obviously an age-associated condition.
The Bromley Health Services NHS Trust provides an outpatient Parkinson’s clinic run by Dr B Kessel as part of the elderly medicine directorate (www.bromleyhospitals.nhs.uk, 2007). There is also the Joint Allocation panel which the elderly medicine team contribute to in providing complex home care packages. Therefore, it would seem that for this locality, there is some specialist Parkinson’s disease provision. However, there are no figures to describe the uptake and demand on health and social services from Parkinson’s disease sufferers. For example, the demand on community nursing services, social care services, nursing homes, continence services, primary health services and pharmacy services.
Parkinson’s disease is usually treated by drug treatments which aim to redress the loss of dopamine (Pentland, 1999). Levodopa-containing agents replace dopamine within the body, while dopamine agonists mimic the action of dopamine (Pentland, 1999). Enzyme inhibitors can be used, which prevent dopamine breakdown, and anticholinergics can reduce the action of acetylcholine which can also improve symptoms (Pentland, 1999). There is ongoing debate and review of the risk-benefit ratio of these treatments but they have been shown to be effective in limiting symptoms (PDS, 2007: Pentland, 1999). Other pharmacological interventions may be utilised to relieve specific symptoms, such as hypnotics for insomnia, antidepressants for confirmed depression, and pain killers and quinine for pain and muscle cramps (Pentland, 1999). Hoever, achieving and maintaining the correct, effective drug regimen as the condition progresses can be problematic for client and medical team (Lloyd, 1999).
It was in 1998 that health inequality reduction became express aims of the NHS in the UK, with the publication of A First Class Service (DH, 1998). Since then, inequalities in health have remained on government and health service agendas. The National Service Framework for Older People (DH, 2001) sets out a number of standards to address key inequalities in health experienced by the subject group concerned in this essay. The fact that such standards have had to be set is evidence of demonstrable inequalities linked to these areas.
To begin with, inequalities are linked to age. It has been shown that in some health and social care services, older people and their carers have been victims of age-based discrimination in access to services and availability of services (DH, 2001). The locality here, Bromley Trust in Kent, does not advertise specialist Parkinson’s disease services explicitly on their website, and so sufferers of this condition fall under the aegis of elderly care services and also neurology services (trust ref). However, resourcing for such services may not be optimum, with less resources perhaps given to less fashionable areas of health need (DH, 2001), but rather to the more ‘fashionable’ and topical areas such as children’s and cancer services. There are certain areas of need which could be viewed as common to older people’s services and specific to those with Parkinson’s disease, such as community equipment (DH, 2001).
Another specific inequality for this client group is access to palliative care services, with many palliative care services only available to cancer sufferers (DH, 2001). Parkinson’s disease is a degenerative and ultimately terminal condition, and as such should be a defining condition for palliative care. However, palliative care services in some areas may be funded by cancer charities such as Macmillan Cancer care, which may pose a challenge. This leads to a policy issue which could only be addressed at policy management level within the local trusts. The burden on family and unpaid carers is considerable, and increases with the progression of the disease (Lloyd, 1999). This leads to further demand on services due to carer-related illnesses (Lloyd, 1999). Again, unequal access to services, here based on the condition and the lack of support for those affected by it, continues to exist.
The issue of inequality related to ethnic minority or background (DH, 2001) may also be applicable here, as the locality does contain a range of different minority ethnic groups. However, the demographics are not available to explore the rates of Parkinson’s disease across the different ethnic minorities in the region.
The literature does highlight one specific incidence of health inequality in relation to this disease. It appears that sufferers who are hospitalized do not have timely access to their medications due to the restrictions of ward rounds and nursing routines (Agnew, 2006). Another inequality is in access to community care assessments which provide the intense levels of care and support necessary as the disease progresses (Lloyd, 1999). Not only do Parkinson’s disease sufferers suffer from a relative difficulty in accessing and obtaining such assessments, the assessment provides only a partial picture when exploring to what extent the health and social care needs of people with Parkinson’s are being assessed (Lloyd, 1999). The assessments are apparently predominantly medical, failing to address the other range of needs, particularly social and emotional issues and everyday living needs such as personal care (Lloyd, 1999). As these assessments are generally not carried out in the person’s own home, they are inadequate in providing a true picture of the realities of the disease in individual cases (Lloyd, 1999).
The more general subject of health inequalities highlights a range of factors which might adversely affect the health and wellbeing of this client group. Poor health is linked to social background factors (Iphofen, 2003). The Bromley community area encompasses a wide range of socio-economic groups, from those deemed to be in poverty through the middle classes to the affluent classes.
Research has demonstrated that those low down on the social class hierarchy tend to have worse housing, poor nutritional status, are less fit and are more likely to engage in damaging or risky health behaviours (Iphofen, 2003). It is logical that these people are the most likely to become ill, die sooner, or be most in need of health and social care input and support (Iphofen, 2003). Other factors which may affect health inequalities include culture, gender and ethnicity (Iphofen, 2003).
It is also important to consider the role of individual action and self-reliance (Iphofen, 2003), which may seem at odds with current political trends towards ‘nanny state’ policies which are in danger of labelling vulnerable groups and individuals as being to blame for their own ill-health. One example of this is the smoking ban, which has been legislated on the back a growing trend of refusing medical treatment to sufferers of smoking-related conditions until they have given up smoking. A similar trend appears to be occurring for obese and overweight individuals, but it would seem that this form of discrimination, whilst socially and morally wrong, is politically sanctioned.
Health Problems related to Parkinson’s Disease.
As can be seen from the literature, there are a wide range of health problems which affect Parkinson’s sufferers, primarily related to the disease and its symptoms and their affects on health and independence. Parkinson’s is a long term illness (Rhind, 2007; Kristjanson et al, 2006) and as such will require long term nursing and social support, surveillance and review. Parkinson’s disease causes physical disability, and affects all of the activities of daily living by restricting independence, self-reliance and self care (PDS, 2007). It can affect people’s ability to maintain relationships, carry on in employment and leisure activities, and to continue to live on their own in their own home, or with their families (PDS, 2007). Lloyd (1999) also highlights the fact that Parkinson’s disease is socially unacceptable and this can have ongoing effects for the sufferer and their carers.
One of the problems associated with the disease is dysphagia, the inability to swallow or difficulty in swallowing (Miller et al, 2006). Dysphagia can have obvious physical effects, such as choking, and inability to access proper nutrition or maintain healthy weight (Miller et al, 2006; Lorefalt et al, 2006). It can also have social and psychological effects, such as embarrassment and depression, withdrawal from social eating situations and effects on family and carers (Miller et al, 2006). Treatment for dysphagia is limited, and so the condition can lead to long term alterations in nutritional state leading to interventions such as total parenteral nutrition (Miller et al, 2006; Lorefalt et al, 2006).
Another associated set of symptoms are psychological symptoms. These can vary, but can present as depression, sleep, confusion and delirium, hallucinations and dementia (Nazarko, 2005). These can be challenging conditions to treat, and may require a mixture of support, psychiatric intervention, pharmacological intervention and sedation, and family/carer support (Nazarko, 2005). Such symptoms represent a considerable demand on existing services, and as yet, there are no specialist psychiatric services for this client group within the locality under discussion.
Addressing Health Inequalities by Condition Management
The Department of Health (2001) stresses the following are necessary to combat the continued inequalities experienced by the older age group in accessing services and support: an integrated approach between local authorities and health services; strong clinical and managerial leadership; service user and carer representation at every level; working parties and management groups which continually address and review the situation. Other actions include workforce development (DH, 2001), and there may be a greater need for training and awareness-raising, particularly with nursing staff. Nursing staff need to listen more to Parkinson’s sufferers when providing care (Agnew, 2006).
Another issue is the proper assessment of older people’s conditions (DH, 2001), which is important as Parkinson’s disease can present as one of a complex range of multiple diseases or conditions. Modern management of Parkinson’s disease (PD) aims to obtain symptom control, to reduce clinical disability, and to improve quality of life (Pacchetti et al, 2000). Specific instruments or tools may be necessary as part of the assessment process (Heffernan and Jenkinson, 2005).
The National Institute for Health and Clinical Excellece (NICE, 2006) make the following recommendations: people with suspected Parkinson’s disease should be seen by a specialist within six weeks; new referrals with later progress of disease should be seen within two weeks; there should be regular, ongoing review of the condition; sufferers should be empowered to participate in their care; and all people with Parkinson’s should have regular access to specialist nursing care to provide monitoring and adjustment of medication, a point of contact for support including home visits and a reliable source of information about clinical and social matters relevant to Parkinson’s disease. There is a need to access and engage with psychiatric services due to the long-term psychological and emotional effects of the disease (Lloyd, 1999). NICE (2006) argue strongly for specialist nurses and multidisciplinary clinics, which would be appropriate given the complex presentation of the disease. This comprehensive approach would go a long way to reducing the inequalities experienced by this age group. However, the local services in Bromley may not be currently resourced adequately to meet such targets.
Other interventions might also include speech therapy, physiotherapy, occupational therapy and of course palliative care services (Carter, 2006). The local trust has service provision in all these areas, and all but the last can be demonstrated to be involved in the care of clients with Parkinson’s disease in Bromley. However, it might be that more provision and more targeted provision might be necessary to reduce the inequalities suffered by this client group. Some literature suggests the use of complementary therapies such as massage to support those with the condition (Patterson et al, 2005). Other therapies such as music therapy might be appropriate (Pachetti et al, 2000). Music as a therapy acts as a specific stimulus to obtain motor and emotional responses by combining movement and stimulation of different sensory pathways (Pacchetti et al, 2000). In a prospective, randomised controlled trial, music therapy was found to be effective on motor, affective, and behavioral functions, and as such would be a valid addition to therapy programmes for people with Parkinson’s disease (Pacchetti et al, 2000).
One example of successful care management has been described by Holloway (2006), who reports in the implementation of a care pathway to meet specific needs. The pathway is user-led, conceptualising the user/carer as the ‘communications centre’, resourced and supported in the management of their situation by the professionals to achieve their own integrated package of care (Holloway, 2006). This pathway takes into account individual disease presentation, social factors, severity of illness and degree of use of services (Holloway, 2006). The research showed this pathway to be feasible for implementation within standard, existing clinics and was well received by clients and carers (Holloway, 2006). Another programme which has demonstrated some success and positive outcomes is a club for patients and their carers at a day hospital in Bridlington (Nasar and Bankar, 2006). The multidisciplinary team use the club for patient assessment, education and disease management, while it also provides the patients and carers with a forum for discussion and an opportunity for social interaction (Nasar and Bankar, 2006).
Another important aspect of reducing health inequalities is in developing alliances with service users and engaging with specific groups who are socially excluded (Watterson, 2003). It may be that the reason that Parkinson’s sufferers feel so excluded is due to nurses’ perceptions of them as less than cognitively competent, due to prejudices about the nature of the disease. Service users have important and often critical knowledge and experience about their lives, condition, symptoms and responses to treatment (Watterson, 2003), which could greatly enhance both policy planning and direction and individual care planning and ongoing disease management. There are challenges associated with attempting such engagement, and even further policy and procedure planning, with associated resource input, would be needed to ensure accessibility, effective communication and responsiveness.
As has been demonstrated, sufferers of Parkinson’s disease, itself a complex aetiology, presentation and progression, have a range of specific and challenging needs which are not being met by the local services in Bromley. While some services exist, there are other models of care, management, assessment and monitoring which have been demonstrated to be effective in other localities, which may be appropriate for this specific client group. Services need to be client centred and comprehensive, utilising tools and guidelines developed specifically for the disease and its symptoms. Services must also be multi-disciplinary, multi-agency and also holistic. However, the provision of such services may not be practical within the current NHS climate. With the direction set out in government and NICE documents, however, it would appear that the drive to improve such services will go ahead.
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This essay addresses a very small, confined client group with a specific disease presentation. However the scope of health inequalities across the whole population may be much wider and more disturbing. It would appear that there is a need for targeted programmes to tackle health inequalities in almost every service, but if these can be addressed in one area, they can be addressed across the whole service to counteract years of unequal access and provision which have continued to fail those in most need.
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