Developing a ‘critical’ approach to patient and public involvement in patient safety in the NHS: learning lessons from other parts of the public sector?

There has been considerable momentum within the NHS over the last 10 years to develop greater patient and public involvement (PPI). This commitment has been reflected in numerous policy initiatives. In patient safety, the drive to increase involvement has increasingly been seen as an important way of building a safety culture. Evidence suggests, however, that progress has been slow and even more variable than in health care generally. Given this context, the paper analyses some of the key underlying drivers for involvement in the wider context of health and social care and makes some suggestions on what lessons can be learned for developing the PPI agenda in patient safety. To develop PPI further, it is argued that a greater understanding is needed of the contested nature of involvement in patient safety and how this has similarities to the emergence of user involvement in other parts of the public services. This understanding has led to the development of a range of critical theories to guide involvement that also make more explicit the underlying factors that support and hinder involvement processes, often related to power inequities and control. Achieving greater PPI in patient safety is therefore seen to require a more critical framework for understanding processes of involvement that can also help guide and evaluate involvement practices.     

Children's and Young People's Involvement and Participation in Mental Health Care

Accountability to service users and the wider public has become a guiding principle for the NHS and a central theme of consecutive pieces of policy that place participation and involvement at the centre of clinical practice and service provision. This paper will look at the background and objectives of children and young people's participation in two key policy areas: their own mental health care, and the planning and delivery of child and adolescent mental health services (CAMHS). In doing so, the paper will highlight children and young people's unique contribution to clinical care and examine current knowledge and practice that encourages their involvement in clinical processes and service development.     

Near-nerve needle sensory and medial plantar nerve conduction studies in patients with small-fiber sensory neuropathy

Background and purpose:  The aim of this prospective study was to show and compare the rate of large-fiber involvement with near-nerve needle sensory (NNNS) nerve conduction study (NCS) and with medial plantar NCS recorded with surface electrodes in a group of patients who had clinically pure small-fiber sensory neuropathy (SFSN) with reduced intra-epidermal nerve fiber density in skin biopsy and with normal routine NCS.
Methods and results:  The study included 19 patients with clinically pure SFSN with normal routine NCS results and 17 healthy volunteers. Routine NCS, skin biopsy, medial plantar NCS and NNNS NCS were performed. NNNS NCS data were evaluated both by using univariate analysis methods and by using a multivariate analysis method, principal components analysis (PCA). Eight patients (42%) had abnormal results for medial plantar NCS with surface electrodes. Seven patients (37%) had abnormal results for NNNS NCS with PCA, whilst only four patients with univariate analysis. We found a significant correlation between intra-epidermal nerve fiber densities, medial plantar NCS and PCA results of NNNS NCS.
Conclusions:  This study showed that large-nerve fibers are also involved in some patients with pure SFSN and medial plantar NCS can accurately diagnose neuropathy without a need for NNNS NCS in patients with normal routine NCS.     

The impact on patients and parents of their involvement in the training of healthcare professionals

The focus of this paper is the impact on patients and parents of being involved in training events for health professionals. A review of the literature is presented and reveals that most studies have previously focused on the impact for the audience of patient and carer involvement in training. Following this review the authors report on an adolescent eating disorders service that involves patients and their parents in a number of training events and feedback obtained about the impact of involvement on these participants. The feedback was generally positive, both for patients and parents, and a number of themes were highlighted. The paper ends with some questions that may stimulate further investigation in this area. Copyright © 2006 John Wiley & Sons, Ltd and Eating Disorders Association.     

Clinical characteristics and course of spinal cord involvement in Behçet's disease

Parenchymal neurological involvement in Behçet's disease (p-NBD) usually presents with a brainstem syndrome; occasionally spinal cord may also be involved. Files of patients with Behçet's disease and spinal cord involvement were reviewed retrospectively, in comparison with other types of p-NBD. Amongst 216 patients with p-NBD, 24 had spinal cord involvement (11%). Most commonly patients presented with sensory-motor symptoms, sphincter and/or sexual dysfunction evolving over days. Four of 10 patients showed single or multiple cervical and/or dorsal lesions on spinal MRI's and one showed dorsal atrophy. Although the clinical picture was variable, it tended to be severe; seven cases had primary progressive course, 11 cases had a secondary progressive course after initial attack(s), four had attacks with severe residual sequela and two had improvement after attacks. After a median follow-up period of 67 months, eight were independent and 14 were dead or dependent, whereas amongst the remaining patients with p-NBD, 113 patients were independent and 56 patients were dead or dependent ( P  < 0.05). Our study suggests that spinal cord involvement has even worse prognosis compared with other types of p-NBD. Therefore, recognition of spinal cord involvement in Behçet's patients should prompt early vigorous treatment.     

Cytochrome c oxidase activity is deficient in blood vessels of patients with myoclonus epilepsy with ragged-red fibers

Summary More than half of the intramuscular blood vessels in muscle biopsies from five patients with myoclonus epilepsy with ragged-fibers (MERRF) who had a point mutation in mitochondrial DNA at the tRNA^Lys region were darkly stained with succinate dehydrogenase (SDH) stain, showing the morphologic characteristics of strongly SDH-reactive blood vessels (SSV), but they had no cytochrome c oxidase (CCO) activity. By electron cytochemistry, the mitochondria in the smooth muscle cells of SSV had no CCO activity. On the other hand, SSV in muscle biopsies from patients with mitochondrial myopathy, encephalopathy, lactic acidosis, and stroke-like episodes (MELAS) had normal CCO activity as shown by light and electron microscopy. The defect in CCO activity in the arteriolar smooth muscle cells and in muscle fibers suggests that CCO deficiency is related to the pathophysiology of MERRF.     

Involving consumers in accreditation: the Irish experience.

BACKGROUND: Following the 2004 review of the Acute Care Accreditation Scheme, the Irish Health Services Accreditation Board (IHSAB) decided to increase the level of consumer involvement in the accreditation process by including consumers as members of the review teams assessing healthcare organizations. Such consumers were known as service user (SU) surveyors where SUs were defined as any person who has used the Irish health system, i.e. a patient or relative/carer, etc. OBJECTIVE: Consumer surveyors first participated in surveys in 2005 and a total of seven surveys took place that year. An evaluation of the role and participation of the consumer surveyor was conducted in 2006. METHODS: All stakeholder groups were consulted, i.e. consumer and peer review surveyors, applicant organizations and IHSAB staff, and a combination of qualitative and quantitative techniques was used. RESULTS: Stakeholders considered that consumer involvement introduced greater objectivity and credibility. Characteristics such as good communication and interpersonal skills, excellent powers of observation and objectivity were identified as important traits for consumer surveyors. There were some issues in relation to the clarity and consistency of their role in terms of the rating of criteria and their contribution to the accreditation report. There was support among the stakeholder groups for greater consumer involvement in the process by participating in additional tours and interviews. CONCLUSION: The evaluation highlights that the introduction of consumer surveyors has been successful but illustrates that their role and level of involvement in the process may need to be re-examined.     

Multimodal evoked potentials in progressive external ophthalmoplegia with mitochondrial myopathy

Multimodal evoked potentials were studied in 13 patients affected by progressive external ophthalmoplegia with histologically proven mitochondrial myopathy. Progressive external ophthalmoplegia occurred with craniosomatic spreading in all the patients and with a varying degree of nervous and/or other system involvement in most of them. In all but one of the subjects, at least one evoked potential modality was abnormal; 11 of them demonstrated an abnormal visual evoked potential, but this finding might have been influenced by concurrent retinal dysfunction. Abnormalities in brainstem auditory evoked potentials and/or somatosensory evoked potentials, revealing an impairment of central sensory pathways, were detected in 7 subjects, 5 of whom lacked clinical evidence of central nervous system involvement. Thus, evoked potentials represent an useful tool for the detection of subclinical central nervous system involvement in patients affected by progressive external ophthalmoplegia with mitochondrial myopathy.     

Epithelioid malignant peripheral nerve sheath tumor involving maxillary sinus

We present a case of epithelioid malignant peripheral nerve sheath tumor (MPNST) located in the maxillary sinus region in a young man. The clinical history was short, but at admission the neoplastic infiltration was so extensive that only diagnostic biopsy was performed. The patient received palliative treatment and died 6 months later. Histologically, the neoplasm had a predominant epithelioid component. Neoplastic tissue was vimentin, S‐100, Cam 5.2 and neuron‐specific enolase positive. P53 protein reaction was found in 6% of the cells and the proliferation index assessed with Ki‐67 was 52%. An appropriate immunohistochemical panel was essential for the final diagnosis of this epithelioid malignant tumor, with the location rather unusual for MPNST.     

Male and female experiences of having fertility matters raised alongside a cancer diagnosis during the teenage and young adult years

Discussion and management of potential reproductive health sequelae of adolescent cancer are essential and challenging components of care for the multidisciplinary team. Despite this, research has been limited to specific experiences (e.g. sperm banking) or fertility-related concerns of adult survivors. This grounded theory study of 38 male and female survivors of adolescent cancer aged 16–30 years drew on in-depth single interviews to map the range of experiences of being advised that treatment might affect fertility. Strong support for being told at around diagnosis was found regardless of gender, age, incapacity or availability of fertility preservation services. Age and life stage appeared less significant for impact than the perceived level of threat to personal and social well-being. Women were more likely to achieve lower levels of comprehension about the physiological impact, to report later distress from lack of fertility preservation services and to revisit more frequently those decisions made by the few offered fertility preservation. Men found decision making about sperm banking straightforward on the whole and reported satisfaction with having the choice regardless of outcome. Findings suggest that young people can cope with this information alongside diagnosis especially when professional and parental support is proportionate to the particular impact on them.