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Louise L Clark is a Lecturer in Intellectual Impairment at The Florence Nightingale School of Nursing and Midwifery,. King's College London. Alison While is ...
CLINICAL REVIEW

Meeting the needs of people with intellectual impairment in primary care Louise L Clark, Alison While Louise L Clark is a Lecturer in Intellectual Impairment at The Florence Nightingale School of Nursing and Midwifery, King’s College London. Alison While is Professor of Community Nursing at The Florence Nightingale School of Nursing and Email: [email protected] Midwifery, King’s College London

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he exact numbers of adults with intellectual impairments and special needs who require access to primary health care are unknown because they comprise a variety of groupings, and there are some individuals with borderline intellectual impairments who have never received a formal diagnosis. The expectation that people who have intellectual impairments will use primary health care services is relatively new (Department of Health (DH), 2001) and has been far from problem free in terms of both access and the delivery of such services (Jansen et al, 2004). This is compounded by a perceived lack of expertise and a growing recognition from professional groups within primary health care that they should be providing care to these patient groups (Melville et al, 2005). Given the health issues surrounding the care of these groups of people it would appear that mainstream health care professionals have been placed in the unenviable situation of being thrust into providing specialized care without being given the necessary education and training to do so. Indeed, Mencap’s reports (2004, 2007) have highlighted the poor care that people with intellectual impairment receive in NHS acute services and primary health care [in this case those with known learning disabilities]. Both reports provided compilations of case studies illustrating the neglect of these people within healthcare. They cited health professionals who felt that it was not their job to care for people with such complex needs and who asked for specialist services to provide the needed care. If the Government is serious about inclusive health care then a major education initiative is required to equip primary health care practitioners for the duty and challenge which they face.

ABSTRACT People with intellectual impairments are treated within the mainstream NHS including primary care with little support from specialist services. There are communication issues for primary care staff in relation to access of services and the assessment of health needs for this vulnerable group of individuals. Primary care staff do not always feel equipped to support people with intellectual impairment and need training in order to do so.

KEY WORDS Intellectual impairment w Learning disability w Vulnerable people

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Background Until the 1990s many of these people were institutionalized in the large Victorian asylums that housed those with learning disabilities and others who had long term and enduring mental health problems (Mittler, 1979). In parallel with the gradual closure of such institutions and a move towards a social model of community care, the wider concept of inclusion within general society has emerged (DH, 2001a). However, with the closure of the long stay hospitals much specialist medical and nursing expertise was lost and mainstream NHS professionals were faced with both the physical and mental health problems of a group of patients that they had little previous contact with (Moore et al, 2003, Slevin and Sines, 2005). Indeed, ‘inclusion’ was always going to be a challenge and especially in relation to integration within the generic model of primary health care. The philosophy behind of the term ‘intellectual impairment’ originally came from the need for health professionals to develop transferable skills which could be successfully used across a range of patient groups, and in response to the demise of specialist NHS care for those with learning disabilities and enduring mental health problems (Clark, 2005). This broader umbrella term incorporates learning disability, long term severe and enduring mental health problems where cognition is affected, dementia, the full spectrum of pervasive developmental disorders (which includes autism), acquired brain injury and an ever growing group of people who have undiagnosed borderline learning disabilities and who have never been known to services. Many of this latter group also have additional mental health problems which further impede their adaptive functioning (Clark and Griffiths, 2008). Some providers of primary health care services are uncertain as to the extent of their responsibilities in relation to people with intellectual impairments and the role of community learning disability teams (Carlson, 2003). This has been compounded by the range of terminology used such as mental retardation, mental sub-normality, mental handicap, intellectual disability and intellectual impairment as well as the confusion which still exists between intellectual impairment and mental health. Some conditions within the spectrum of intellectual impairment will not be covered by the designated field of practice of the community learning disability teams and there is further uncertainty as to where specialist advice and help may

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CLINICAL REVIEW be sourced, especially for older adults who have dementia or for people with acquired brain injury. Access to primary health care remains a challenge for many people with intellectual impairment despite higher rates of physical and mental health problems and co-morbidity compared to the general population (Jensen et al, 2004). Over a decade ago, during the early stages of generic health inclusion for people with intellectual impairment it was noted that, although some additional morbidity was related to the aetiological process of underlying conditions (Asprey et al, 2004), long term health inequalities especially those in relation to poor access to services and the additional impact of lower socio-economic circumstances were contributory factors (Nocon, 1994). This situation appears to remain unchanged (Clark and Griffiths, 2008).

Communication issues Barriers to service provision for this patient group include communication issues between the potential patient and the healthcare professional for a variety of reasons. People who have undiagnosed or mild intellectual impairments may or may not have the support of carers and yet are still expected to initiate contact and use primary health care, while those who have more severe impairments are dependant on untrained carers to identify any health issues and then act accordingly. There is substantial evidence (Gulliford et al, 2002) indicating the differential access rates of marginalized groups so that it is not surprising that those with intellectual impairment, even mild intellectual impairment, find access to primary health care difficult. Furthermore, the dependence of those with severe intellectual impairment upon untrained carers compounds the problem. Indeed, where communication may be almost absent, impaired, or subject to behavioural overshadowing, the first point of access to primary health care may never occur at all or be thwarted in the earliest stages of the process. This can be for a variety of reasons including challenging behaviour, impatience in the waiting room, insufficient consultation time given at appointments and a lack of experience and/or expertise by either formal or informal carers at home with poorly educated NHS administrative staff and healthcare professionals compounding the problem. A principle issue in the area of communication is the difficulty surrounding the eliciting of information from the patient in order to acquire basic information to contribute to the building of a comprehensive medical history (Lennox et al, 1997). The use of body language and facial expression when communicating with people who have intellectual impairments are helpful in conveying information (Hogg et al, 2001) but there is often difficulty in their interpretation. There can also be specific issues when dealing with patients who have autistic spectrum disorders as they have great difficulty with eye contact and are prone to literal interpretations of comments made and they also struggle with the use of metaphors and similes (Morgan, 1996). Communication to achieve maximum understand-

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ing requires a high ‘The use of body language level of skill as well as and facial expression when time, neither of which may be readily availcommunicating with people able within primary health care teams. who have intellectual Undertaking a physical impairments are helpful in examination may also conveying information’ present problems due to misunderstanding and unfamiliarity with normal clinical procedures within primary health care consultations. Thus, while consent is often assumed with the general population, special care needs to be taken to ensure that physical examination and measurement procedures are fully understood so that cooperation can be gained. The General Medical Council (2008) recommended that healthcare practitioners should check whether patients need additional support in understanding information and bear in mind that some patients have barriers to understanding communication which may not always be obvious. They also recommended the involvement of other members of the healthcare team or advocates as well as others close to the patient to enable communication and information delivery.

Decision making Making decisions regarding treatment and care for people who lack capacity is governed by the Mental Capacity Act (DH, 2005a) in England and Wales. Scotland has its own legislation in relation to this and currently Northern Ireland has no primary legislation on this subject and is governed by common law which dictates decisions being made in the patient’s best interests. The Mental Capacity Act (DH, 2005a) states that the practitioner must assume that the patient has the capacity to make decisions regarding care and treatment, examinations or investigations unless it has been made clear that, despite all appropriate help and support, it is not possible. An assumption of a lack of capacity to consent must not be based on age, disability, behaviour, medical condition or lack of ability to communicate, or in fact that they may disagree with the clinician (DH, 2005a). When making decisions for patients who lack capacity it is important to establish if it is a temporary or permanent state. Care and treatment options should then be provided which will result in an overall clinical benefit to the patient. Any intervention must be of benefit to the patient and the minimum necessary to achieve the purpose (GMC, 2008).

Specific health issues Poor health screening and diagnostic overshadowing have been shown to mask ill health in people with intellectual impairment (Baker, 1993) with insufficient knowledge, experience and expertise of health care professionals contributing to delays in diagnosis (Van Schrojenstein et al, 2000). Only a small number of people with intellectual impairment access screening services such as cervical cytology or mammography (Read, 2005). Although audi-

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District nurses should be aware of the needs of patients with learning disabilities on their caseloads.

tory and visual impairments are extremely common in this group of people, the screening processes are fraught with problems such as the individual’s carer believing that the procedure may be traumatic so that they do not attend the appointment, or the fear of such procedures instigating challenging behaviour (Band, 1998; Warburg, 2001). Furthermore, there is evidence that people with intellectual impairments are less likely to receive basic health checks such as cholesterol levels and preventative treatments such as statins than the general population (Disability Rights Commission, 2008). Coronary artery disease is the second most common cause of death among people with intellectual impairment (14–20%) with rates rising as a result of lifestyle and increased longevity (Wells et al, 1997). Obesity is also common (Marshall et al, 2003) for a variety of reasons (including genetics, behavioural causes, medication and lifestyle choices) and is known to predispose to coronary heart disease. The prevalence of diabetes mellitus in the overall population of people with intellectual impairment is unknown, however, it is known that it is more common in individuals who have Down syndrome (Wallace and Dalton, 2006) and has a high incidence in those taking certain atypical neuroleptic medications such as sulpiride and risperidone due to abnormalities of glucose and lipid metabolism (Winterhalder, 2008). People with intellectual impairment are more likely to have gastrointestinal disorders than the general population (Higgins and O’Toole, 2008) as a result of several influences including diets which are generally low in fruit and roughage, chronic dehydration and a lack of exercise. Additionally constipation is common and may lead to problem behaviours such as ‘rooting and smearing’ of faeces (Kelly, 2008) which poses considerable care management problems as well as further marginalizing such people from society and wider social life.

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Oral health is another area of concern and it would appear that the people with intellectual impairment have more complex needs in this domain than those of the general population (Shapira et al, 1998). In particular people with Down syndrome have been shown to have a greater prevalence and severity of periodontitis (Zigmond et al, 2006). Gingival overgrowth has been shown to occur for a number of reasons, particularly in relation to the use of certain medications prevalent in people with intellectual impairment (for example, phenytoin) (Higgins and O’Toole, 2008). As with a physical examination, the challenge of a dental examination may be perceived as too troublesome to be pursued thereby excluding people with intellectual impairment from preventative dental care and treatment for caries. Poor dental health may also contribute to poor nutrition due to discomfort on eating. Indeed, this is known to be the case among older people where poorly fitting dentures and loose and painful teeth may underlie the adoption of poor diets devoid of fresh fruit and vegetables which require the ability to masticate (Simons et al, 1999). Additionally as a group they have higher rates of epilepsy than are seen in the general population (Foundation for People with Learning Disabilities, 2002). It is estimated that epilepsy has a prevalence of 15% in people with mild learning disabilities and 30% in people with severe learning disabilities (Stokes et al, 2004). Epilepsy treatment has much improved over the years so that medication levels should be the minimum necessary to avoid seizures with a balance to be struck between suppression of seizures and excessive sedation which interferes with functioning (Stokes et al, 2004). Good titration of epilepsy treatment requires constant monitoring of therapeutic values (Stokes et al, 2004) with access to supportive primary health care staff for regular prescriptions. Syndrome related conditions are also prevalent. For

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CLINICAL REVIEW example, people with Down syndrome are more prone to lung and respiratory disorders, hypothyroid disease and clinical depression (Higgins and O’Toole, 2008).Those who have Williams syndrome have a greater risk of congenital cardiac problems and people with Prader-Willi syndrome have a tendency towards feeding problems, obesity, diabetes mellitus and breathing difficulties (Hogenboom, 2001). It is generally known that people with Down syndrome are more prone to Alzheimer’s Disease because they age prematurely (Prasher, 2005) and additionally the prevalence of dementia in people who have other forms of intellectual impairment is also up to four times higher than that of the general population (Alzheimer’s Society, 2004). The assessment process may be extremely problematic due to both diagnostic and behavioural overshadowing (Cooper et al, 2003). Adults who have intellectual impairment are calculated to have twice the risk factors than those of the general population of sustaining an accidental injury. Sherrard et al (2004) reviewed the evidence and found that common injuries include falls, asphyxia, traffic related injuries and burns and suggested that they share the same risk factors for certain injuries as do children who do not have intellectual impairments. Mental health problems are also more prevalent in people who have intellectual impairments (DH, 2001a) than in the general population and such problems may confuse the diagnostic process in terms of physical health needs. An allegedly large number of these mental health problems, including psychoses, remain undiagnosed (Doody et al, 1998; Deb et al, 2001). Various factors have been cited as contributing to the higher rates of mental health problems in people with intellectual impairment including brain damage, epilepsy, repeated loss or separation issues, poor coping mechanisms, lack of social skills and communication issues (Fraser and Nolan, 1995). Winterhalder (2008) has recommended that psychotropic medication for clients with intellectual impairments often need to be prescribed at lower doses to that of the general population due to the reduced quality of neuronal tissue and either developmental or degenerative abnormalities which has implications when prescribing for clients in a primary care setting. Prescribing medication for patients with intellectual impairment in general may be problematic particularly in relation to compliance with medication regimes. Poor coping mechanisms and communication issues add to the general confusion of the perceived need to take the medication by the patient (McCarthy and Millard, 2003). Compliance may be improved by ensuring that the patient and their carers understand the medication regime themselves with additional support of community nurses being useful in this process (Winterhalder, 2008).

Care planning and action plans ‘Valuing People’ (DH, 2001a) recognized that access to primary health care (in this case for people with a diagnosed learning disability) could be difficult and recommended that the existing Community Learning Disability Teams

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should take on the role of ‘health facilitators’ for their client group. As health facilitators they were to aid access to primary health care and in addition provide training and support to primary health care staff especially in the completion of Health Action Plans (DH, 2001a) for this vulnerable group of people. This policy has proved problematic in a number of areas as it did not take into account the small number of staff working in some of these teams, nor that some geographical areas did not have such a team in place. Many patients who have borderline learning disabilities have never been formally diagnosed and a significant number have developed mental health problems which have exacerbated their impaired functioning, and in consequence have simply ‘slipped through the net’. For those who have more complex and enduring mental health problems, a similar ‘Health Action Plan’ is available in the form of the Care Programme Approach (CPA) which was originally created as a part of Section 117 discharge planning under the Mental Health Act (1983). Although predominantly focusing on patients with mental health problems, there is a bio-psycho-social approach to care within CPA which is multi-disciplinary and multiorganizational. The great advantage of CPA is that one member of the chosen (and sometimes extensive) team takes overall responsibility for the person’s care bringing all other members together frequently and sometimes at short notice when needed. CPA has been used in some areas for people with intellectual impairment who had more complex mental and physical health care needs but who had not been detained under the Mental Health Act (1983) (Roy, 2000). However, due to the intensity of management for the care package to succeed, CPA is a financially expensive option and consequently recent guidance (DH, 2008) has decreed that it should therefore be reserved for only the most severe and acute of cases. The Healthcare Commission (2005) has published a strategic plan to improve health in people with learning disabilities with a duty of care being placed on UK public services to promote disability equality. There are financial gains for primary health care that offer additional services for people with learning disabilities and lists must now be kept of patients with learning disabilities as part of the Quality and Outcome Framework (DH, 2005). However, this is only applicable to people with known learning disabilities rather than the much larger umbrella group of people with intellectual impairments.

Challenges to existing services Government policy (DH, 2001) has dictated the shift towards generic NHS care for people with intellectual impairment although anecdotal evidence suggests that many health care professionals remain unaware of the existence of this policy. The gaps within primary health care for people with intellectual impairment could be filled with a national framework for collaborative working which would engage mental health, learning disability and specific dementia care services more fully within the primary health care model and in addition this would provide

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CLINICAL REVIEW expert guidance from specialist health professionals in the broader concept of intellectual impairment. There are currently no specific National Service Frameworks for either learning disability or intellectual impairment. The NSF for Mental Health (DH, 1999) addressed services for people with severe mental illness but did not focus on learning disability, acquired brain injury or developmental disorders while the NSF for Older People (DH, 2001c) addressed the care of people with dementia. Probably the most applicable NSF to people with intellectual impairment per se is the NSF for Long Term Conditions (DH, 2005b) which focused on long term neurological conditions and the effect that they may have on other areas of functioning and physical health. Targets set by this NSF included personalized care planning for vulnerable individuals who were most at risk. However, anecdotal evidence suggests that many individuals with borderline intellectual impairments remain unknown to services and are therefore not entitled to individual care plans (Clark and Griffiths, 2008).

Conclusion Education during pre- and post- qualification in both intellectual impairment and mental health for all primary health care professionals and support staff is essential if health services are to identify and meet the health needs of this vulnerable population. Both Government and the various professional bodies need to champion a core education for health care professionals that will provide essential knowledge and skills to underpin generic practice. Ideally this should have occurred in parallel with the reduction in specialist services for people with intellectual impairments. The Mental Health Foundation (1996) identified the need for practitioners to receive training in disability equality and communication methods. However, the complex health needs of people with intellectual impairment indicates the need for a comprehensive training programme for all primary health care staff if they are to be adequately equipped to undertake supportive health care required by this vulnerable and marginalized group. With the numbers of registered learning disability nurses declining each year (24 604 in 2005, DH, 2007) and commissioned student places in this speciality at an all time low (785 including Degree and Diploma, DH, 2007), there is a danger that skills required when caring for people with intellectual impairment may become lost. In order to ensure quality healthcare in the future, it is essential that primary healthcare staff become competent and adequately confident in this speciality and able to use the available evidence base. Research and development standards in intellectual impairment should be similar to those in other health professional groups (RCN, 2004), however, curBJCN rently this is not the case (UK LDCNN, 2006). Alzheimer’s Society (2004) Information Sheet: Learning Disability and Dementia. Alzheimer’s Society, London Asprey T, Francis R, Tyrer S, Quillman S (2004) Patients with learning disability

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KEY POINTS w There are a significant number of people with intellectual impairment. w People with intellectual impairment have higher morbidity rates. w Differing communication skills are required in order to deliver their care. w Primary care services need to be developed to meet these needs.

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