‘A light in a very dark place’: The role of a voluntary organisation providing support for those affected by encephalitis

Easton, Ava; Atkin, Karl; Hare, Philippa

doi:10.1080/09602010601155205

Cited by 6 publications

(4 citation statements)

References 27 publications

(26 reference statements)

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“…Patients and their families could be given information about voluntary-sector partners such as the Encephalitis Society (ES) or Encephalitis Global. These worldwide organizations are not only sources of support and information, but also are centers for sharing treatment, where survivors can communicate and aid each other to achieve optimal recovery [43]. They reinforce the efforts of researchers and medical institutions in partnership with the survivor community [43].…”

Section: Management In Cases Of Suspected and Confirmed Viral Encephamentioning

confidence: 99%

Psychiatric Aspects of Herpes Simplex Encephalitis, Tick-Borne Encephalitis and Herpes Zoster Encephalitis Among Immunocompetent Patients

2015

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The psychopathological symptoms occurring in the course of diseases associated with infections are often initially isolated and non-characteristic, and may cause diagnostic difficulties. Moreover, such disorders tend to be less responsive to psychiatric management. Among possible causes such as trauma, neoplasm and vascular changes, inflammatory changes of the brain as a result of a viral infection should also be considered. There were 452 registered cases of viral encephalitis in Poland in 2010, and although not very prevalent they remain a severe and lifethreatening condition. What is more, the frequently occurring neurological and psychiatric complications of viral encephalitis often result in permanent disabilities, causing a significant decrease in the quality of life. This article presents the three types of encephalitis that are most prevalent among immunocompetent patients in Poland, i.e. herpes simplex encephalitis (HSE), tick-borne encephalitis (TBE) and herpes zoster encephalitis (HZE). The psychopathology of the acute phase of the infection, the residual symptoms, features apparent in imaging studies and some neuropathological aspects are also presented. The paper also focuses on psychiatric aspects of the diagnostics and treatment of the described conditions. The clinical pictures of these infections are quite specific, although they cover a wide range of symptoms, and these characteristic features are described. The aim of this review is also to show the significance of thorough diagnostics and a multidisciplinary approach to patients with viral CNS infections (Adv Clin Exp Med 2015, 24, 2, 361-371).

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Section: Management In Cases Of Suspected and Confirmed Viral Encephamentioning

confidence: 99%

Psychiatric Aspects of Herpes Simplex Encephalitis, Tick-Borne Encephalitis and Herpes Zoster Encephalitis Among Immunocompetent Patients

2015

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“…, Glover , Hayes & Coetzer , Hardy , Easton et al . , National Centre for Independent Living , Bright , Social Care Institute for Excellence (SCIE) ,b, James et al . ].…”

Section: Resultsmentioning

confidence: 99%

“…The highest quality study was Easton et al . 's () survey of Encephalitis Society service users ( n = 130), rated as ‘acceptable practice’. Eight papers (Fiedler & Ellis , Skirton & Glendinning , Janicki et al .…”

Section: Resultsmentioning

confidence: 99%

Good practice in social care for disabled adults and older people with severe and complex needs: evidence from a scoping review

Gridley

Brooks

Glendinning

2013

Health Soc Care Community

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What is known about this topic• The population of people with severe and complex needs is growing.• Support for these groups comes from a wide range of organisations and is often criticised for being uncoordinated.• The preferred policy in the UK is to issue personal budgets to enable service users to purchase their own support. What this paper adds• There is little evaluation evidence about the costs or outcomes of 'good practice' approaches to UK social care for people with severe and complex needs.• Some promising evidence was identified, indicating the effectiveness of a young adults' multidisciplinary specialist team; intensive case management of people with severe dementia; specialist (psycho-geriatric inpatient) social work; and multidisciplinary training for mental health professionals. AbstractThis article reports findings from a scoping review of the literature on good practice in social care for disabled adults and older people with severe and complex needs. Scoping reviews differ from systematic reviews, in that they aim to rapidly map relevant literature across an area of interest. This review formed part of a larger study to identify social care service models with characteristics desired by people with severe and complex needs and scope the evidence of effectiveness. Systematic database searches were conducted for literature published between January 1997 and February 2011 on good practice in UK social care services for three exemplar groups: young adults with life-limiting conditions; adults who had suffered a brain injury or spinal injury and had severe or complex needs; and older people with dementia and complex needs. Five thousand and ninety-eight potentially relevant records were identified through electronic searching and 51 by hand. Eighty-six papers were selected for inclusion, from which 29 studies of specific services were identified. However, only four of these evaluated a service model against a comparison group and only six reported any evidence of costs. Thirty-five papers advocated person-centred support for people with complex needs, but no well-supported evaluation evidence was found in favour of any particular approach to delivering this. The strongest evaluation evidence indicated the effectiveness of a multidisciplinary specialist team for young adults; intensive case management for older people with advanced dementia; a specialist social worker with a budget for domiciliary care working with psycho-geriatric inpatients; and interprofessional training for community mental health professionals. The dearth of robust evaluation evidence identified through this review points to an urgent need for more rigorous evaluation of models of social care for disabled adults and older people with severe and complex needs.

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“…Several described the support of NGOs in navigating healthcare access, a finding supported by the literature. 30,57,59 All migrant participants stated that austerity measures would reduce their ability to access healthcare and no disconfirming evidence was found regarding the principles of availability of services and access based on clinical need. A strength of this research lies in its focus on conveying the voices of vulnerable migrants and health advocates in Britain, which are relevant for current national debate on healthcare alterations and broader global debate on migration and health.…”

Section: Discussionmentioning

confidence: 98%

National Health Service Principles as Experienced by Vulnerable London Migrants in "Austerity Britain": A Qualitative Study of Rights, Entitlements, and Civil-Society Advocacy

Rafighi

Poduval

Legido‐Quigley

et al. 2016

Int J Health Policy Manag

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Background: Recent British National Health Service (NHS) reforms, in response to austerity and alleged 'health tourism, ' could impose additional barriers to healthcare access for non-European Economic Area (EEA) migrants. This study explores policy reform challenges and implications, using excerpts from the perspectives of non-EEA migrants and health advocates in London. Methods: A qualitative study design was selected. Data were collected through document review and 22 indepth interviews with non-EEA migrants and civil-society organisation representatives. Data were analysed thematically using the NHS principles. Results: The experiences of those 'vulnerable migrants' (ie, defined as adult non-EEA asylum-seekers, refugees, undocumented, low-skilled, and trafficked migrants susceptible to marginalised healthcare access) able to access health services were positive, with healthcare professionals generally demonstrating caring attitudes. However, general confusion existed about entitlements due to recent NHS changes, controversy over 'health tourism, ' and challenges registering for health services or accessing secondary facilities. Factors requiring greater clarity or improvement included accessibility, communication, and clarity on general practitioner (GP) responsibilities and migrant entitlements. Conclusion: Legislation to restrict access to healthcare based on immigration status could further compromise the health of vulnerable individuals in Britain. This study highlights current challenges in health services policy and practice and the role of non-governmental organizations (NGOs) in healthcare advocacy (eg, helping the voices of the most vulnerable reach policy-makers). Thus, it contributes to broadening national discussions and enabling more nuanced interpretation of ongoing global debates on immigration and health.

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‘A light in a very dark place’: The role of a voluntary organisation providing support for those affected by encephalitis

Cited by 6 publications

References 27 publications

Psychiatric Aspects of Herpes Simplex Encephalitis, Tick-Borne Encephalitis and Herpes Zoster Encephalitis Among Immunocompetent Patients

Psychiatric Aspects of Herpes Simplex Encephalitis, Tick-Borne Encephalitis and Herpes Zoster Encephalitis Among Immunocompetent Patients

Good practice in social care for disabled adults and older people with severe and complex needs: evidence from a scoping review

National Health Service Principles as Experienced by Vulnerable London Migrants in "Austerity Britain": A Qualitative Study of Rights, Entitlements, and Civil-Society Advocacy

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