Legal issues are prevalent in life-limiting illness, relating to social welfare needs as well as delivery of legally compliant care. Yet the broad range of agencies delivering care is fragmented, risking unmet needs. This mixed-methods research explored the potential of cross-agency, interprofessional education to raise awareness and understanding of legal needs in this context and promote closer service integration. Four identical workshops, run in north-east England, brought together 99 participants from health, social, legal, advice, charitable, public and private sectors. Participants were overwhelmingly positive about the value of learning together with 97% wanting more sessions. Learning priorities included greater awareness of services and referral routes as well as areas of law relating to advance care planning and mental capacity. Interprofessional education, spanning the breadth of relevant agencies and supported by national strategy, was identified as a route to integrating services.

BACKGROUND:Legal issues are common in chronic illness. These include matters of daily life, such as problems with employment, finances and housing, where rights or entitlements are prescribed by law. They also include planning ahead, for example, making a Lasting Power of Attorney. However, the nature, impact and management of legal needs in the context of end of life care are not known. This study investigated these from the perspectives of patients and carers.METHODS:Patients, with estimated prognosis 12 months or less, and carers were recruited from two sites: day services within an urban hospice and primary care in an area of deprivation in North-East England. Semi-structured interviews explored the nature and impact of legal issues, access to appropriate support and unmet needs. Thematic analysis of data was undertaken.RESULTS:Twenty-seven interviews were conducted with 14 patients (10/14 hospice) and 13 carers (7/13 hospice). Five were patient-carer dyads. All participants had experienced problems raising legal issues, which generated significant practical and psychological challenges. All had struggled to access support for social welfare legal issues, describing not knowing what, who, or when to ask for help. All participants accessed some support, however routes, timing and issues addressed were variable. Facilitators included serendipitous triggers and informed healthcare professionals who offered support directly, or signposted elsewhere. A range of professionals and organisations provided support; resolution of issues conferred substantial benefit. The majority of participants identified unresolved legal issues, predominantly related to planning ahead. The challenge of facing increased dependency and death proved a key barrier to this; informed and compassionate healthcare professionals were important enablers.CONCLUSION:Everyday legal needs are a common and distressing consequence of life-limiting illness, affecting patients and carers alike. This study identified inconsistent approaches but practical and psychological benefit when needs were met. Healthcare professionals were central to meeting social welfare legal needs and facilitating effective planning, with important roles as 'critical noticers', trusted intermediaries and compassionate communicators. Increased awareness, clearer pathways to support and closer service integration are needed to meet legal needs as a component of holistic care.

BACKGROUND Visual field defects are a common consequence of stroke, and compensatory eye movement strategies have been identified as the most promising rehabilitation option. There has been a move toward compensatory telerehabilitation options, such as the Durham Reading and Exploration (DREX) training app, which significantly improves visual exploration, reading, and self-reported quality of life. OBJECTIVE This study details an iterative process of liaising with stroke survivors, carers, and health care professionals to identify barriers and facilitators to using rehabilitation tools, as well as elements of good practice in telerehabilitation, with a focus on how the DREX package can be maximized. METHODS Survey data from 75 stroke survivors informed 12 semistructured engagement activities (7 focus groups and 5 interviews) with 32 stroke survivors, 10 carers, and 24 occupational therapists. RESULTS Thematic analysis identified key themes within the data. Themes identified problems associated with poststroke health care from both patients’ and occupational therapists’ perspectives that need to be addressed to improve uptake of this rehabilitation tool and telerehabilitation options generally. This included identifying additional materials or assistance that were required to boost the impact of training packages. The acute rehabilitation setting was an identified barrier, and perceptions of technology were considered a barrier by some but a facilitator by others. In addition, 4 key features of telerehabilitation were identified: additional materials, the importance of goal setting, repetition, and feedback. CONCLUSIONS The data were used to try to overcome some barriers to the DREX training and are further discussed as considerations for telerehabilitation in general moving forward.

Objective Little is known about legal needs in the context of life-limiting illness, particularly the need for advice concerning legal arrangements, rights and entitlements. This UK-based multiagency stakeholder engagement exercise scoped legal needs associated with life-limiting illness and identified support structures, gaps and opportunities for practice improvement. Method and analysis Snowball sampling generated a stakeholder group from a wide range of regional and national organisations involved in care of people with life-limiting illness, spanning health, social care, legal support, advice, charities, prison services as well as patient and carer representatives. A coproduced survey of three open questions generated qualitative data, interpreted by thematic analysis. Results Stakeholders reported a broad spectrum of problems and needs raising legal issues, with no consistency of definition. A classification is proposed, identifying matters concerning rights and entitlements of patients/carers in day-to-day life and decisions around care, both immediate and in the future, as well as professional responsibilities in delivering personalised care. The support structures identified were predominantly online literature, although there was some availability of remote and face-to-face services. Limited awareness of the issues, variable service configuration, fragmentation of care and inequitable access were identified as barriers to support. Stakeholders recognised the need for education and closer multiagency working. Conclusions ‘Legal needs’ incorporate wide-ranging issues, but there is inconsistency in perceptions among stakeholders. Practice is variable, risking unmet need. Opportunities for improvement include more formal integration of social welfare legal services in the health context, generating clearer pathways for assessment and management.

ObjectivesTo assess the impact of both the Committee on Safety of Medicines (CSM) warning (December 2003) and the National Institute for Health and Care Excellence (NICE) guidance (September 2005) on antidepressant prescription rates in children and adolescents within the UK primary care service.SettingPopulation based study of primary care antidepressant prescribing using the Clinical Practice Research Datalink (CPRD).ParticipantsUnder-18s presenting to primary care with a depressive disorder or related diagnostic code recorded in the CPRD.Primary outcome measureAntidepressant prescription rates per month per 100 000 depressed 4–17 year olds.ResultsFollowing the CSM warning, the prior trend towards increased prescribing rates for selective serotonin reuptake inhibitors (SSRIs) in children was significantly reversed (β for change in trend −12.34 (95% CI −18.67 to −6.00, p<0.001)). However, after the publication of the NICE guidelines the prior trend towards increased prescribing resumed for those SSRIs mentioned as potential treatments in the guidance (fluoxetine, citalopram and sertraline) (β for change in trend 11.52 (95% CI 5.32 to 17.73, p<0.001)). Prescribing of other SSRIs and tricyclics remained low.ConclusionsDespite a strong emphasis on psychosocial interventions for child and adolescent depression, it may be that the NICE guidelines inadvertently encouraged further antidepressant prescribing, at least for those SSRIs cited. Although the guidelines gave cautions and caveats for the use of antidepressants, practitioners may have interpreted these recommendations as endorsing their use in young people with depression and related conditions. However, more accurate prevalence trend estimates for depression in this age group, and information on the use of psychosocial interventions would be needed to rule out other reasons underlying this increase in prescribing.

Background Life-limiting illness generates an array of challenges for patients and carers but little is known about legal issues. There is no definition of legal issues in this context and limited integration of care across health, social, advice, legal and charitable sectors although all contribute to holistic care. Aims The Legal Needs of Adults towards End of Life (LeNA) project investigated the scope and scale of legal needs from a range of perspectives, the support structures available and professional education needs with a view to shaping national policy. Methods Sept 2017 – June 2018: systematic literature review and national stakeholder engagement exercise across health, social, charitable, advice and legal services: definition of legal needs, available support and gaps. May 2018 – March 2019: semi-structured interviews (24 patient/carer) and questionnaires (124 patient/carer/staff) to evaluate experience of legal needs. Sept 2018 – Jan 2019: four inter-professional workshops to consider educational needs through a taster session and focus groups (6). Results Legal needs are very broad and practice highly variable. The project has developed a classification relating to patient/carer rights and professional responsibilities. This could direct future policy. Patients and carers struggle with unmet needs, uncertain of how to access help and unwilling to plan for the future in the context of active concerns. Some support structures already exist but the project identified a number of barriers and consideration needs to be given to accessibility and suitability of these. There is significant enthusiasm for widely inter-professional education in this area, using an interactive group structure. Conclusions Legal needs are poorly defined in palliative care, resulting in variability in practice and unmet need. This is an area for improvement and follow-on research is planned at national policy level. Together with novel education, this will support better assessment and integrated care around legal needs towards end of life.

Objectives Sacral nerve stimulation (SNS) may provide long-term symptom relief to patients suffering from chronic constipation. Patients are currently selected for SNS using a 2-week peripheral nerve evaluation (PNE) comprising stimulation by temporary leads. However, only 40% of test responders receive long-term benefit from treatment meaning that healthcare costs per successfully treated patient are too high. The primary objective was to assess tined-lead testing to predict benefit from SNS for chronic constipation. Patients and methods A randomized double-blind sham-controlled cross-over design evaluated enhanced PNE (ePNE) using tined quadripolar electrode leads over 6 weeks. The design differentiated between patients with discriminate and indiscriminate responses to testing. A score improvement of 25% or more was considered to be a positive response within a stimulation period. The primary outcome was the proportion of patients showing a reduction of at least 0.5 in constipation symptom score at 6 months. Results A total of 45 patients were randomized, of whom 29 (64.4%) were test-phase responders. Of these, 27 were implanted providing permanent SNS. During ePNE, seven (18%) were discriminate responders, 22 (56%) were indiscriminate responders and 10 (26%) were nonresponders. Six patients were withdrawn during the test phase because of infection or noncompliance. At 6 months, there was no significant difference in primary outcome between discriminate and indiscriminate responders (60 vs. 57%, P=0.76). The study was terminated prematurely because of a persistent infection rate of 10 (22%) during ePNE of which nine (20%) were severe. Conclusion ePNE is a poor predictor of treatment response at 6 months. This suggests a strong and persistent placebo response during both SNS PNE and treatment. An extended 6-week PNE poses a high risk of infection.

This chapter explores the role of systematisation, and in particular pathways, in the achievement of the cultural change by allowing nurses to lead the way in articulating the process that constitutes the patient journey. Alison Kitson argues that patient-centred care can only become a reality via a paradigm shift whereby 'caring' is given as great a priority as 'curing' and that 'traditional healthcare culture and roles need to change if service delivery is to improve'. The gendered division of labour, in which nursing was seen as the 'natural' expression of the caring nature of women, has long been attributed to the organisation of clinical work in which nurses were the unseen 'handmaidens' to doctors who 'know best'. The professionalisation of nursing, with its unique knowledge base, its commit ment to quality assurance, to the transparent organisation and planning of care, places nursing at the forefront of the clinical governance agenda.

Objectives Communication and planning for heart failure (HF) care near the end of life is known to be complex. Little is known about how the patient experience of palliative assessment and communication needs change over time, and how this might inform management. Our aim was to explore experiences of giving or receiving a prognosis and advanced palliative care planning (ACP) for those with HF. Methods We carried out a longitudinal grounded theory study, employing in-depth interviews with 14 clinicians (primary and secondary care) and observations of clinic and home appointments, followed by a series of interviews with 13 patients with HF and 9 carers. Results Overall, the majority of participants rejected notions of HF as a terminal illness in favour of a focus on day-to-day management and maintenance, despite obvious deterioration in disease stage and needs over time. Clinicians revealed frustration about the uncertain nature of HF prognosis, leading to difficulties in planning. Others highlighted the need to deliver problem-based, individualised care but felt constrained sometimes by the lack of multidisciplinary ACP. Patients reported an absence of prognostic discussions with clinicians. Conclusions This is the first study exploring the experiences of prognostic communication at all stages of HF. Findings raise questions regarding the pragmatic utility of the concept of HF as a terminal illness and have implications for future HF care pathway development. Findings support the incorporation of a problem-based approach to management, which recognises the importance of everyday functioning for patients and carers as well as the opportunity for ACP.

Constipation is common in adults and up to 20% of the population report this symptom. Chronic constipation (CC), usually defined as more than 6 months of symptoms, is less common but results in 0.5 million UK GP consultations per annum. The effect of symptoms on measured quality of life (QOL) is significant, and CC consumes significant health care resources. In the UK, it is estimated that 10% of district nursing time is spent on constipation. Trans-anal irrigation therapy has become a widely used treatment despite a lack of robust efficacy data to support its use. The long-term outcome of treatment is also unclear. A randomised comparison of two different methods of irrigation (high- and low-volume) will provide valuable evidence of superiority of one system over the other, as well as providing efficacy data for the treatment as a whole.

Patients using intravenous drugs have particular physical healthcare needs.1 Drug-related death rates for patients using heroin and morphine have risen sharply recently.2 Nevertheless, drug overdoses are only one of many factors that contribute to the high mortality rate. Methadone or buprenorphine treatment reduces but does not eliminate the high mortality rate. Patients in this group also experience high morbidity rates.3 ### Infections O’Donnell and colleagues alert us to the high prevalence of skin and groin infections. Infections in this group are complex and wide ranging. Injecting manure and other materials used in heroin production produces predictable soft-tissue infections and abscesses, as well as the occasional exotic infection such as botulism, necrotising fasciitis, or tetanus. Other relatively more common but still serious infections include subacute bacterial endocarditis (SABE) and osteomyelitis, which may be difficult to diagnose, perhaps because it is not easy to think of the diagnoses in standard consultations. Infections not directly related to injecting, such as pneumonia, are also more common than the general population and likely to be caused by poor living conditions and poor nutrition. ### Hepatitis C This group represents the major cause of hepatitis C infection in the UK; the RCGP has done much to make GPs aware of the connection and arrange appropriate testing and follow-up. There may also be opportunities for primary care to be involved in hepatitis C treatment through new commissioning routes.4 ### Deep vein thrombosis Deep vein thrombosis (DVT) is common, and in addition to the acute dangers causes poor quality of life from chronically swollen and sometimes ulcerated legs.5 Pharmaceutical management of DVT poses particular …

Patients using intravenous drugs have particular physical healthcare needs.1 Drug-related death rates for patients using heroin and morphine have risen sharply recently.2 Nevertheless, drug overdoses are only one of many factors that contribute to the high mortality rate. Methadone or buprenorphine treatment reduces but does not eliminate the high mortality rate. Patients in this group also experience high morbidity rates.3### InfectionsO’Donnell and colleagues alert us to the high prevalence of skin and groin infections. Infections in this group are complex and wide ranging. Injecting manure and other materials used in heroin production produces predictable soft-tissue infections and abscesses, as well as the occasional exotic infection such as botulism, necrotising fasciitis, or tetanus. Other relatively more common but still serious infections include subacute bacterial endocarditis (SABE) and osteomyelitis, which may be difficult to diagnose, perhaps because it is not easy to think of the diagnoses in standard consultations. Infections not directly related to injecting, such as pneumonia, are also more common than the general population and likely to be caused by poor living conditions and poor nutrition.### Hepatitis CThis group represents the major cause of hepatitis C infection in the UK; the RCGP has done much to make GPs aware of the connection and arrange appropriate testing and follow-up. There may also be opportunities for primary care to be involved in hepatitis C treatment through new commissioning routes.4### Deep vein thrombosisDeep vein thrombosis (DVT) is common, and in addition to the acute dangers causes poor quality of life from chronically swollen and sometimes ulcerated legs.5 Pharmaceutical management of DVT poses particular …

Background Accurate optical characterisation and removal of small adenomas (<10 mm) at colonoscopy would allow hyperplastic polyps to be left in situ and surveillance intervals to be determined without the need for histopathology. Although accurate in specialist practice the performance of narrow band imaging (NBI), colonoscopy in routine clinical practice is poorly understood. Methods NBI-assisted optical diagnosis was compared with reference standard histopathological findings in a prospective, blinded study, which recruited adults undergoing routine colonoscopy in six general hospitals in the UK. Participating colonoscopists (N=28) were trained using the NBI International Colorectal Endoscopic (NICE) classification (relating to colour, vessel structure and surface pattern). By comparing the optical and histological findings in patients with only small polyps, test sensitivity was determined at the patient level using two thresholds: presence of adenoma and need for surveillance. Accuracy of identifying adenomatous polyps <10 mm was compared at the polyp level using hierarchical models, allowing determinants of accuracy to be explored. Findings Of 1688 patients recruited, 722 (42.8%) had polyps <10 mm with 567 (78.5%) having only polyps <10 mm. Test sensitivity (presence of adenoma, N=499 patients) by NBI optical diagnosis was 83.4% (95% CI 79.6% to 86.9%), significantly less than the 95% sensitivity (p<0.001) this study was powered to detect. Test sensitivity (need for surveillance) was 73.0% (95% CI 66.5% to 79.9%). Analysed at the polyp level, test sensitivity (presence of adenoma, N=1620 polyps) was 76.1% (95% CI 72.8% to 79.1%). In fully adjusted analyses, test sensitivity was 99.4% (95% CI 98.2% to 99.8%) if two or more NICE adenoma characteristics were identified. Neither colonoscopist expertise, confidence in diagnosis nor use of high definition colonoscopy independently improved test accuracy. Interpretation This large multicentre study demonstrates that NBI optical diagnosis cannot currently be recommended for application in routine clinical practice. Further work is required to evaluate whether variation in test accuracy is related to polyp characteristics or colonoscopist training. Trial registration number The study was registered with clinicaltrials.gov (NCT01603927).

Introduction Colorectal cancer is preventable through polypectomy at colonoscopy. Most polyps are adenomas, with malignant potential, or hyperplastic with no malignant risk. Most adenomas are small (<10 mm) with minimal chance of harbouring cancer. Accurate optical diagnosis during colonoscopy would allow small adenomas to be removed and discarded and rectosigmoid hyperplastic polyps to be left in-situ. Narrow band imaging (NBI) in expert hands allows accurate optical diagnosis and assignment of surveillance intervals. Method The accuracy of surveillance interval assigned by NBI optical diagnosis was compared with the current reference standard of histopathological diagnosis in a prospective, blinded calibration study in 6 community hospitals in northeast England. Adults undergoing routine colonoscopy between July 2012 and February 2014 were eligible. Exclusion criteria were: inflammatory bowel disease; polyposis syndromes; pregnancy. Participating colonoscopists (n = 28) passed a validated training module utilising the NBI International Colorectal Endoscopic (NICE) classification. Optical diagnosis was provided for all polyps <10 mm and surveillance interval when only small polyps were present. Results Of 1688 patients recruited, 723 (42.8%) had polyps <10 mm of which 567 (78.4%) only had polyps <10 mm. The sensitivity, specificity and negative predictive value of optical diagnosis (n = 499 patients) in determining the need for colonoscopic surveillance were 73.0% (95% CI: 66.9–79.9%), 75.6% (95% CI: 70.9–80.1%) and 85.2% (95% CI: 81.0–89.1%). The sensitivity and specificity per polyp (n = 1620 polyps) was 76.1% and 77.5%. If ≥ 2 NICE features were identified, then sensitivity was 95–100%. Conclusion The findings of this study suggest that NBI optical diagnosis cannot yet be recommended for use in routine clinical practice. Sensitivity per polyp was acceptable when ≥2 NICE features were present. Further work is required to determine if variation is due to colonoscopist or polyp characteristics. Disclosure of interest None Declared.

Trans-anal irrigation (TAI) is used widely to treat bowel dysfunction, although evidence for its use in adult chronic functional constipation remains unclear. Long-term outcome data are lacking, and the effectiveness of therapy in this patient group is not definitively known.

Introduction Sacral nerve stimulation (SNS) can be an effective treatment for some patients with functional bowel disorders. The highly variable nerve stimulation waveforms generated by the re-usable “brown box” (model 3625, Medtronic US) SNS test stimulator have previously been reported.1Since 2013, the single-use digital test stimulator “Verify” (model 3531, Medtronic US) has been used in our trust. Within the UK most clinicians continue to use the brown box; Medtronic no longer manufacture model 3625 and it requires recalibration between patient use. We aimed to assess the Verify stimulator’s output waveform to quantify if this was as variable as the analogue precursor. Method A prospective output waveform assessment of 15 used Verify SNS test stimulators using a cross-calibrated oscilloscope (Tektronix model 2230) and a counter-timer (Black Star Apollo 100). Devices were successively loaded with the same AAAA batteries and connected to a constant simulated tissue load (993Ω) circuit with two output electrodes attached to the oscilloscope (Figure 1). The output waveform amplitude and pulse width were measured at clinically used settings and compared with the expected output values (amplitude by V = IR). Devices passed the calibration test if within tolerances of 10% and 20%. Results At clinical settings (14 Hz/210 µSec) the measured amplitude and pulse width did not vary significantly from expected at a programmed current of 0.2, 0.5, 1.0, 2.0 and 3.0 mAmp, and 100% of devices passed the calibration test (Table 1). 6 devices failed at 0.1milliAmps due to more variation at low energy settings. The variations in device frequency were too small to be measured with the counter-timer and therefore in the order of magnitude of × 10–4Hertz. Similarly, the pulse width times were just as accurate at 100, 210 and 400 µSec with the standard deviations 0.48, 0.93 and 0.69 µSec respectively. Conclusion At all clinically relevant settings 100% of the devices passed the calibration test. The failures at 0.1 mAmps are irrelevant (below therapeutic thresholds). Given these results, the lack of manufacturer support for the 3625 model, and its reported variability, we conclude that only the Verify testing device is fit for purpose in clinical practice. Disclosure of interest None Declared. Reference Etherson KJ, Davidson A, Yiannakou Y, Mason JM. Surgeons don’t forget to calibrate: Findings from SNS test stimulators. Gut 2013;62:A27-A8

Objective Patients with inflammatory bowel disease (IBD) demonstrate an inflammatory response which bears some similarities to that seen in ischaemic heart disease (IHD). The nature of the association of IBD with IHD is uncertain. We aimed to define the extent and direction of that association. Design This retrospective cohort study examined records from patients aged ≥ 15 years with IBD from 1987–2009 (n = 19163) who were age and gender matched with patients without IBD (n = 75735) using the General Practice Research Database. The primary outcome was the hazard ratio for IHD. Results A higher proportion of IBD patients had a recorded diagnosis of IHD ever, 2220 (11.6%) compared with 6504 (8.6%) of controls. However, the majority (4494, 51.5%) developed IHD prior to IBD diagnosis (1404 (63.2%) of IBD cases and 3090 (47.5%) of controls). There was increased IHD incidence in the first year after IBD diagnosis. Mean age at IHD diagnosis was statistically similar across all IBD groups apart from for those with Ulcerative Colitis (UC) who were slightly younger at diagnosis of angina compared to controls (64.5y vs. 67.0y, p = 0.008) and coronary heart disease (65.7y vs.67.9y, p = 0.015). Of those developing IHD following IBD diagnosis, UC patients were at higher risk of IHD (unadjusted HR 1.3 (95% CI 1.1–1.5), p<0.001) or MI (unadjusted HR 1.4 (95% CI 1.1–1.6), p = 0.004). Conclusion Although IHD prevalence was higher in IBD patients, most IHD diagnoses predated the diagnosis of IBD. This implies a more complex relationship than previously proposed between the inflammatory responses associated with IHD and IBD, and alternative models should be considered.

ObjectiveThe contraceptive needs of illicit opioid users differ from non-drug users but are poorly understood. The aim of this study was to describe contraceptive use and pregnancy outcomes in opioid-using women, and to examine their association with a range of risk factors.MethodThis retrospective cohort study used UK general practice records, Treatment Outcomes Profile and National Drug Treatment Monitoring System data, and a nested data validation exercise. A cohort of 376 women aged 20-61 years were in active treatment for opioid addiction in October 2010 at two specialised primary care practices in North-East England. Outcomes were age-adjusted prevalence estimates for contraceptive use and pregnancy outcomes in users of illicit opioids. The association between lifestyle-related risk factors and contraception was explored.ResultsDrug-using women made lower use of planned (non-condom) contraception (24% vs 50%, p<0.001), had more frequent pregnancy terminations (0.46 vs. 0.025, p = 0.004) and higher annual incidence of chlamydia (1.1% vs. 0.33%, p<0.001), when compared with age-matched population data. Specifically, there was low use of oral contraceptives (4% vs. 25%, p<0.001), IUCD (1% vs. 6%, p<0.001), and sterilisation (7% vs. 6%, p = 0.053), but higher rates of injectable contraceptives (6% vs. 3%, p = 0.003). A total of 64% of children aged <16 years born to this group did not live with their mother. No individual risk factor (such as sex-working) significantly explained the lower use or type of non-condom contraception.ConclusionsThis is the first study to describe planned contraceptive use among drug-users, as well as the association with a range of risk factors and pregnancy outcomes. The low uptake of planned contraception, set against high rates of terminations and sexually transmitted disease demonstrates the urgent clinical need to improve contraceptive services, informed by qualitative work to explore the values and beliefs influencing low contraceptive uptake.