Logistics and procurement outsourcing in the healthcare sector: A comparative analysis.

As outsourcing ventures become more complex, opportunities for synergies and efficiencies increase, but also create longer and more fragmented supply chains which could have disastrous consequences, particularly in a healthcare context. This study investigates the implications of outsourcing on healthcare supply chains by comparing two alternatives: outsourcing from public-to-private and outsourcing from public-to-public. A conceptual framework, adapted from previous literature, has been employed to provide a comprehensive overview of the phenomenon and consider the implications of logistics and procurement outsourcing on the healthcare supply chain structure and performance. The study presents a European cross-country comparison, analysing both the National Health Service (NHS) outsourcing in England (public-to-private outsourcing) and the Regional Health Service (RHS) outsourcing in the Tuscany region (Italy) (public-to-public outsourcing). Specificities and commonalities of the two outsourcing experiences provide suggestions for managers and policy-makers and enhance the current knowledge of outsourcing in the public healthcare sector.

(How) is COVID-19 reframing interaction between the NHS and private healthcare?

In March 2020 a 'major deal' was struck between the National Health Service (NHS) and private healthcare sector to facilitate 'crisis' and 'continuity' responses to COVID-19. A further deal was struck in January 2022 to support the NHS in tackling the Omicron variant, suggesting that the pandemic was evolving, rather than definitively over. The legal basis for these deals was a Public Policy Exclusion Order, a temporary relaxation mechanism in UK competition law defined by a 'disruption period'. In a global pandemic, the 'healthcare disruption period' might be considered to be of a different scope and nature to short-term disturbances experienced in other sectors, such as groceries. This article examines the Public Policy Exclusion Orders issued in respect of health services in England and Wales, and the Collective Agreements notified under these between March 2020 and March 2021, and again in March 2022. Amid ongoing tensions surrounding 'NHS privatisation', this enables a timely analysis of whether the underlying relationship between the NHS and private healthcare may be changing in response to COVID-19, and how considerations of ethical frameworks are also relevant to this aspect of the pandemic response.

Overseas general practitioners (GPs) and prescription behaviour in England.

The UK imports many doctors from abroad, where medical training and experience may differ. This study aims to understand how drug prescription behaviour varies in English GP practices with higher shares of foreign-trained GPs. Results indicate that in general prac- tices with a high proportion of GPs trained outside the UK, there are higher prescriptions for antibiotics, mental health medication, analgesics, antacids, and statins, while controlling for patient and practice characteristics. However, we found no significant impact on pa- tient satisfaction or unplanned hospitalisations, suggesting that this behaviour may be due to over-prescribing. Identifying differences in prescribing habits amongst GPs is crucial in deter- mining best policies for ensuring consistent services across GP practices and reducing health inequalities.

Comparative effectiveness of two- and three-dose COVID-19 vaccination schedules involving AZD1222 and BNT162b2 in people with kidney disease: a linked OpenSAFELY and UK Renal Registry cohort study.

Background: Kidney disease is a key risk factor for COVID-19-related mortality and suboptimal vaccine response. Optimising vaccination strategies is essential to reduce the disease burden in this vulnerable population. We therefore compared the effectiveness of two- and three-dose schedules involving AZD1222 (AZ; ChAdOx1-S) and BNT162b2 (BNT) among people with kidney disease in England. Methods: With the approval of NHS England, we performed a retrospective cohort study among people with moderate-to-severe kidney disease. Using linked primary care and UK Renal Registry records in the OpenSAFELY-TPP platform, we identified adults with stage 3-5 chronic kidney disease, dialysis recipients, and kidney transplant recipients. We used Cox proportional hazards models to compare COVID-19-related outcomes and non-COVID-19 death after two-dose (AZ-AZ vs BNT-BNT) and three-dose (AZ-AZ-BNT vs BNT-BNT-BNT) schedules. Findings: After two doses, incidence during the Delta wave was higher in AZ-AZ (n = 257,580) than BNT-BNT recipients (n = 169,205; adjusted hazard ratios [95% CIs] 1.43 [1.37-1.50], 1.59 [1.43-1.77], 1.44 [1.12-1.85], and 1.09 [1.02-1.17] for SARS-CoV-2 infection, COVID-19-related hospitalisation, COVID-19-related death, and non-COVID-19 death, respectively). Findings were consistent across disease subgroups, including dialysis and transplant recipients. After three doses, there was little evidence of differences between AZ-AZ-BNT (n = 220,330) and BNT-BNT-BNT recipients (n = 157,065) for any outcome during a period of Omicron dominance. Interpretation: Among individuals with moderate-to-severe kidney disease, two doses of BNT conferred stronger protection than AZ against SARS-CoV-2 infection and severe disease. A subsequent BNT dose levelled the playing field, emphasising the value of heterologous RNA doses in vulnerable populations. Funding: National Core Studies, Wellcome Trust, MRC, and Health Data Research UK.

The Evolving Nature of Health Technology Assessment: A Critical Appraisal of NICE's New Methods Manual.

OBJECTIVES: The National Institute for Health and Care Excellence (NICE) recently completed a review of its methods for health technology assessment, involving a 2-stage public consultation. We appraise proposed methodological changes and analyze key decisions. METHODS: We categorize all changes proposed in the first consultation as "critical," "moderate" or "limited" updates, considering the importance of the topic and the degree of change or the level of reinforcement. Proposals were followed through the review process, for their inclusion, exclusion, or amendment in the second consultation and the new manual. RESULTS: The end-of-life value modifier was replaced with a new "disease severity" modifier and other potential modifiers were rejected. The usefulness of a comprehensive evidence base was emphasized, clarifying when nonrandomized studies can be used, with further guidance on "real-world" evidence developed separately. A greater degree of uncertainty was accepted in circumstances when evidence generation raised challenges, in particular for children, rare diseases, and innovative technologies. For some topics, such as health inequality, discounting, unrelated healthcare costs, and value of information, significant changes were possibly warranted, but NICE decided not to make any revisions at present. CONCLUSION: Most of the changes to NICE's health technology assessment methods are appropriate and modest in impact. Nevertheless, some decisions were not well justified and further research is needed on several topics, including investigation of societal preferences. Ultimately, NICE's role of protecting National Health Services resources for valuable interventions that can contribute toward improving overall population health must be safeguarded, without accepting weaker evidence.

Severe trauma with associated pelvic fractures: The impact of regional trauma networks on clinical outcome.

Lately, the care of severely injured patients in the United Kingdom has undergone a significant transformation. The establishment of regional trauma networks (RTN) with designated Major Trauma Centers (MTCs) and satellite hospitals called Trauma Units (TUs) has centralized the care of severely injured patients in the MTCs. Pelvic fractures are notoriously linked with hypovolemic shock or even death from excessive blood loss. The aim of this prospective cohort study is to compare the profile of severely injured patients with combined pelvic fractures and their mortality between two different distinct eras of an advanced healthcare system. Anonymized consecutive patient records submitted to TARN UK between 2002 and 2017 by NHS England hospitals were analyzed. Records of patients without a pelvic fracture, or with isolated pelvic fractures (no other serious injury with abbreviated injury scale AIS >2) were excluded. All patients with known outcomes were included and were divided into 2 distinct periods (pre-RTN era: between January 2002 and March 2008 (control group); and RTN era April 2013 to June 2017 (study group)). Data from the transition period from April 2008 to March 2013 were excluded to minimize the effect of variations between the developing networks and MTCs during that era. Overall, the study group included 10,641 patients, whereas the control group was 3152 patients, with a median age of 52.4 and 35.1 years and an ISS of 24 and 27 respectively. A systolic blood pressure below 90mmHg was observed in 7.2% of patients in the study group and 10.4% in the control group. A significant increase of the median time to death (from 8hrs to 188hrs) was observed between the two eras. The cumulative mortality of severely injured patients with pelvic fractures decreased significantly from 17.8% to 12.4% (p<0.0001). The recorded improvement of survivorship in the subgroup of severely injured patients with a pelvic fracture (32% lower in the post-RTN than in the pre-RTN period: OR 1.32  (95% CI 1.21 - 1.44), following the first 5 years of established regional trauma networks in NHS England, is encouraging, and should be attributed to a wide range of factors that translate to all levels of trauma care.

The cost-per-QALY threshold in England: Identifying structural uncertainty in the estimates.

Introduction: There are increasing numbers of estimates of opportunity cost to inform the setting of thresholds as ceiling cost-per-quality-adjusted life year (QALY) ratios. To understand their ability to inform policy making, we need to understand the degree of uncertainty surrounding these estimates. In particular, do estimates provide sufficient certainty that the current policy "rules" or "benchmarks" need revision? Does the degree of uncertainty around those estimates mean that further evidence generation is required? Methods: We analyse uncertainty and methods from three papers that focus on the use of data from the NHS in England to estimate opportunity cost. All estimate the impact of expenditure on mortality in cross-sectional regression analyses and then translate the mortality elasticities into cost-per-QALY thresholds using the same assumptions. All three discuss structural uncertainty around the regression analysis, and report parameter uncertainty derived from their estimated standard errors. However, only the initial, seminal, paper explores the structural uncertainty involved in moving from the regression analysis to a threshold. We discuss the elements of structural uncertainty arising from the assumptions that underpin the translation of elasticities to thresholds and seek to quantify the importance of some of the effects. Results: We find several sets of plausible structural assumptions that would place the threshold estimates from these studies within the current National Institute for Health and Care Excellence (NICE) range of £20,000 to £30,000 per QALY. Heterogeneity, an additional source of uncertainty from variability, is also discussed and reported. Discussion: Lastly, we discuss how decision uncertainty around the threshold could be reduced, setting out what sort of additional research is required, notably in improving estimates of disease burden and of the impact of health expenditure on quality of life. Given the likely value to policy makers of this research it should be a priority for health system research funding.

Identifying Patterns of Clinical Interest in Clinicians' Treatment Preferences: Hypothesis-free Data Science Approach to Prioritizing Prescribing Outliers for Clinical Review.

BACKGROUND: Data analysis is used to identify signals suggestive of variation in treatment choice or clinical outcome. Analyses to date have generally focused on a hypothesis-driven approach. OBJECTIVE: This study aimed to develop a hypothesis-free approach to identify unusual prescribing behavior in primary care data. We aimed to apply this methodology to a national data set in a cross-sectional study to identify chemicals with significant variation in use across Clinical Commissioning Groups (CCGs) for further clinical review, thereby demonstrating proof of concept for prioritization approaches. METHODS: Here we report a new data-driven approach to identify unusual prescribing behaviour in primary care data. This approach first applies a set of filtering steps to identify chemicals with prescribing rate distributions likely to contain outliers, then applies two ranking approaches to identify the most extreme outliers amongst those candidates. This methodology has been applied to three months of national prescribing data (June-August 2017). RESULTS: Our methodology provides rankings for all chemicals by administrative region. We provide illustrative results for 2 antipsychotic drugs of particular clinical interest: promazine hydrochloride and pericyazine, which rank highly by outlier metrics. Specifically, our method identifies that, while promazine hydrochloride and pericyazine are barely used by most clinicians (with national prescribing rates of 11.1 and 6.2 per 1000 antipsychotic prescriptions, respectively), they make up a substantial proportion of antipsychotic prescribing in 2 small geographic regions in England during the study period (with maximum regional prescribing rates of 298.7 and 241.1 per 1000 antipsychotic prescriptions, respectively). CONCLUSIONS: Our hypothesis-free approach is able to identify candidates for audit and review in clinical practice. To illustrate this, we provide 2 examples of 2 very unusual antipsychotics used disproportionately in 2 small geographic areas of England.

Recording of 'COVID-19 vaccine declined': a cohort study on 57.9 million National Health Service patients' records in situ using OpenSAFELY, England, 8 December 2020 to 25 May 2021.

BackgroundPriority patients in England were offered COVID-19 vaccination by mid-April 2021. Codes in clinical record systems can denote the vaccine being declined.AimWe describe records of COVID-19 vaccines being declined, according to clinical and demographic factors.MethodsWith the approval of NHS England, we conducted a retrospective cohort study between 8 December 2020 and 25 May 2021 with primary care records for 57.9 million patients using OpenSAFELY, a secure health analytics platform. COVID-19 vaccination priority patients were those aged ≥ 50 years or ≥ 16 years clinically extremely vulnerable (CEV) or 'at risk'. We describe the proportion recorded as declining vaccination for each group and stratified by clinical and demographic subgroups, subsequent vaccination and distribution of clinical code usage across general practices.ResultsOf 24.5 million priority patients, 663,033 (2.7%) had a decline recorded, while 2,155,076 (8.8%) had neither a vaccine nor decline recorded. Those recorded as declining, who were subsequently vaccinated (n = 125,587; 18.9%) were overrepresented in the South Asian population (32.3% vs 22.8% for other ethnicities aged ≥ 65 years). The proportion of declining unvaccinated patients was highest in CEV (3.3%), varied strongly with ethnicity (black 15.3%, South Asian 5.6%, white 1.5% for ≥ 80 years) and correlated positively with increasing deprivation.ConclusionsClinical codes indicative of COVID-19 vaccinations being declined are commonly used in England, but substantially more common among black and South Asian people, and in more deprived areas. Qualitative research is needed to determine typical reasons for recorded declines, including to what extent they reflect patients actively declining.

Trends and clinical characteristics of COVID-19 vaccine recipients: a federated analysis of 57.9 million patients' primary care records in situ using OpenSAFELY.

BACKGROUND: On 8 December 2020 NHS England administered the first COVID-19 vaccination. AIM: To describe trends and variation in vaccine coverage in different clinical and demographic groups in the first 100 days of the vaccine rollout. DESIGN AND SETTING: With the approval of NHS England, a cohort study was conducted of 57.9 million patient records in general practice in England, in situ and within the infrastructure of the electronic health record software vendors EMIS and TPP using OpenSAFELY. METHOD: Vaccine coverage across various subgroups of Joint Committee on Vaccination and Immunisation (JCVI) priority cohorts is described. RESULTS: A total of 20 852 692 patients (36.0%) received a vaccine between 8 December 2020 and 17 March 2021. Of patients aged ≥80 years not in a care home (JCVI group 2) 94.7% received a vaccine, but with substantial variation by ethnicity (White 96.2%, Black 68.3%) and deprivation (least deprived 96.6%, most deprived 90.7%). Patients with pre-existing medical conditions were more likely to be vaccinated with two exceptions: severe mental illness (89.5%) and learning disability (91.4%). There were 275 205 vaccine recipients who were identified as care home residents (JCVI group 1; 91.2% coverage). By 17 March, 1 257 914 (6.0%) recipients had a second dose. CONCLUSION: The NHS rapidly delivered mass vaccination. In this study a data-monitoring framework was deployed using publicly auditable methods and a secure in situ processing model, using linked but pseudonymised patient-level NHS data for 57.9 million patients. Targeted activity may be needed to address lower vaccination coverage observed among certain key groups.

Establishing a clinical psychology team within the orthognathic service: A triad model of orthodontic, maxillofacial and psychological care.

The importance of psychological support for orthognathic patients has taken an increasing precedence over recent years and is embedded in orthognathic commissioning guidelines. Furthermore, attention towards mental health-related conditions and their management is of prime importance and continues to be a key area of focus within healthcare settings. With this in mind, this paper aims to outline our experience of establishing a need for and subsequently securing funding to establish a clinical psychology service within an existing orthognathic service in the NHS. The information outlined may be of benefit to orthognathic teams seeking to secure such psychological support within their respective units.

The Unmet Need for Intrathecal Drug Delivery Pumps for the Treatment of Cancer Pain in England: An Assessment of the Hospital Episode Statistics Database.

OBJECTIVES: Intrathecal drug delivery (ITDD) devices have been shown to be a clinically effective and cost-effective option for the management of cancer pain and recommended for use in England. The aim of this study is to assess the impact of the 2015 NHS England Clinical Commissioning Policy on the uptake of ITDD pumps for the management of cancer pain or if there is an ongoing unmet need for this intervention in England. MATERIALS AND METHODS: Hospital Episode Statistics (HES) were obtained for all patients undergoing ITDD for the management of cancer pain between 2014 and January 2020. In addition, HES were utilized to estimate the number of patients with cancer potentially eligible for ITDD pump during the same period. RESULTS: The number of patients with cancer and those potentially suitable to receive an ITDD for the management of cancer pain have increased year on year since 2014. This increase has not been matched by an uptake in the provision of ITDD. Conservative estimates suggest that at least 8000 people with cancer pain would be eligible for ITDD; 458 patients received an intervention for pain management between April 2018 and March 2019 and only 30 ITDD pumps were implanted in that same period. CONCLUSIONS: We observed a substantial gap between the need and provision of ITDD for patients with refractory cancer pain in England despite the recommendation for the use of ITDD for this patient population. In addition, we present suggestions for improvement of access to and provision of ITDD in England.

Admissions for orthostatic hypotension: an analysis of NHS England Hospital Episode Statistics data.

OBJECTIVES: To determine whether admissions for orthostatic hypotension (OH) and its consequences, such as falls, have changed over the past 10 years in the National Health Service (NHS) England. SETTING: Data from NHS England Hospital Episode Statistics, a database containing details of all admissions, accident and emergency attendances and outpatient appointments at NHS hospitals in England, were obtained and analysed. PARTICIPANTS: Data on hospital admissions in NHS England, as defined by finished consultant episodes (FCEs), were examined between 2008 and 2017. MAIN OUTCOME MEASURES: FCEs for the following International Classification of Disease codes were examined: OH (I95.1), tendency to fall (R29.6), epilepsy (G40) and chronic obstructive pulmonary disease (COPD) (J44). The total number of FCEs was also examined. RESULTS: Between 2008 and 2017, FCEs for OH rose from 14 658 to 30 759, a 110% increase. The greatest increase was in the over 75 years age group where FCEs went from 10 639 to 22 756, a 114% rise. The number of falls related FCEs in this age group rose from 61 841 to 89 622 (45%). Admissions for epilepsy and COPD rose by 7% and 35%, respectively. CONCLUSIONS: The number of admissions for OH has risen dramatically over the past 10 years, as have admissions for falls and related disorders. This rise is out of proportion with admissions for other conditions such as epilepsy and COPD. We postulate that this relates to tighter blood pressure (BP) targets. This suggests caution in the application of recent BP targets to older, frailer adults.

Should I be more concerned about patient care or the four-hour target?

UK emergency departments (EDs) are high-pressure environments focused on delivering care in the most efficient way to patients with a range of health problems. For many people EDs are the front door of the NHS and are a focus of significant media and political interest. People who attend EDs are often anxious and a main element of their concern is waiting time for treatment. In UK EDs the four-hour target is a main NHS target and a cornerstone of evaluating ED performance. There is ongoing debate about whether spending additional time in EDs affects patient care and outcomes, with some research showing increased mortality associated with longer stays and some showing no effect on mortality. Evidence suggests that patients are spending longer in UK EDs and it is possible that those who remain longer than four hours could have worse outcomes. This article identifies the effects of prolonged ED length of stay through a systematic literature review of data published since implementation of the four-hour target to measure the relationship between breaching the target and morbidity and mortality.

Identifying individuals with chronic pain after knee replacement: a population-cohort, cluster-analysis of Oxford knee scores in 128,145 patients from the English National Health Service.

BACKGROUND: Approximately one in five patients undergoing knee replacement surgery experience chronic pain after their operation, which can negatively impact on their quality of life. In order to develop and evaluate interventions to improve the management of chronic post-surgical pain, we aimed to derive a cut-off point in the Oxford Knee Score pain subscale to identify patients with chronic pain following knee replacement, and to characterise these patients using self-reported outcomes. METHODS: Data from the English Patient-Reported Outcome Measures (PROMs) programme were used. This comprised patient-reported data from 128,145 patients who underwent primary knee replacement surgery in England between 2012 and 2015. Cluster analysis was applied to derive a cut-off point on the pain subscale of the Oxford Knee Score. RESULTS: A high-pain group was identified, described by a maximum of 14 points in the Oxford Knee Score pain subscale six months after surgery. The high-pain group, comprising 15% of the sample, was characterised by severe and frequent problems in all pain dimensions, particularly in pain severity, night pain and limping, as well as in all dimensions of health-related quality of life. CONCLUSIONS: Patients with Oxford Knee Score pain subscale scores of 14 or less at six months after knee replacement can be considered to be in chronic pain that is likely to negatively affect their quality of life. This derived cut-off can be used for patient selection in research settings to design and assess interventions that support patients in their management of chronic post-surgical pain.

Work of the NHS England Youth Forum and its effect on health services.

AIM: To examine the role of members of the NHS England Youth Forum (NHSEYF) and the strategies used to influence health service provision for children and young people. METHOD: An evaluative mixed-methods study was commissioned by NHS England and undertaken by the University of Hertfordshire between July 2015 and September 2016. Data collection comprised activity logs, a form of questionnaire, and semi-structured interviews. FINDINGS: The analysis of the activity logs revealed that the young people were undertaking a wide range of activities across England. Seven themes emerged from the interviews: the young people; motivation; commitment; community (the local area as well as a community spirit); knowledge experts; youth workers; and funding. In summary, the members of the NHSEYF were committed to their role and their work was having a positive effect on health service provision. CONCLUSION: The NHSEYF has developed rapidly and successfully. It is enabling the voice of young people to be heard.

Trends and variation in prescribing of low-priority treatments identified by NHS England: a cross-sectional study and interactive data tool in English primary care.

Objectives NHS England recently announced a consultation seeking to discourage the use of treatments it considers to be low-value. We set out to produce an interactive data resource to show savings in each NHS general practice and to assess the current use of these treatments, their change in use over time, and the extent and reasons for variation in such prescribing. Design Cross-sectional analysis. Setting English primary care. Participants English general practices. Main outcome measures We determined the cost per 1000 patients for prescribing of each of 18 treatments identified by NHS England for each month from July 2012 to June 2017, and also aggregated over the most recent year to assess total cost and variation among practices. We used mixed effects linear regression to determine factors associated with cost of prescribing. Results Spend on low-value treatments was £153.5 m in the last year, across 5.8 m prescriptions (mean, £26 per prescription). Among individual treatments, liothyronine had the highest prescribing cost at £29.6 m, followed by trimipramine (£20.2 m). Over time, the overall total number of low-value prescriptions decreased, but the cost increased, although this varied greatly between treatments. Three treatment areas increased in cost and two increased in volume, all others reduced in cost and volume. Annual practice level spending varied widely (median, £2262 per thousand patients; interquartile range £1439 to £3298). Proportion of patients over 65 was strongly associated with low-value prescribing, as was Clinical Commissioning Group. Our interactive data tool was deployed to OpenPrescribing.net where monthly updated figures and graphs can be viewed. Conclusions Prescribing of low-value treatments is extensive but varies widely by treatment, geographic area and individual practice. Despite a fall in prescription numbers, the overall cost of prescribing for low-value items has risen. Prescribing behaviour is clustered by Clinical Commissioning Group, which may represent variation in the optimisation efficiency of medicines, or in some cases access inequality.

"With Great Power Comes Great Responsibility": Democracy, the Secretary of State for Health and Blame Shifting Within the English National Health Service.

The English National Health Service (NHS) has suffered from a democratic deficit since its inception. Democratic accountability was to be through ministers to Parliament, but ministerial control over and responsibility for the NHS were regarded as myths. Reorganizations and management and market reforms, in the neoliberal era, have centralized power within the NHS. However, successive governments have sought to reduce their responsibility for health care through institutional depoliticization, to shift blame, facilitated through legal changes. New Labour's creation of the National Institute for Clinical Excellence (NICE) and Monitor were somewhat successful in reducing ministerial culpability regarding health technology regulation and foundation trusts, respectively. The Conservative-Liberal Democrat coalition created NHS England to reduce ministerial culpability for health care more generally. This is pertinent as the NHS is currently being undermined by inadequate funding and privatization. However, the public has not shifted from blaming the government to blaming NHS England. This indicates limits to the capacity of law to legitimize changes to social relations. While market reforms were justified on the basis of empowering patients, I argue that addressing the democratic deficit is a preferable means of achieving this goal.

Specialist treatment of chronic fatigue syndrome/ME: a cohort study among adult patients in England.

BACKGROUND: NHS specialist chronic fatigue syndrome (CFS/ME) services in England treat approximately 8000 adult patients each year. Variation in therapy programmes and treatment outcomes across services has not been described. METHODS: We described treatments provided by 11 CFS/ME specialist services and we measured changes in patient-reported fatigue (Chalder, Checklist Individual Strength), function (SF-36 physical subscale, Work & Social Adjustment Scale), anxiety and depression (Hospital Anxiety & Depression Scale), pain (visual analogue rating), sleep (Epworth, Jenkins), and overall health (Clinical Global Impression) 1 year after the start of treatment, plus questions about impact of CFS/ME on employment, education/training and domestic tasks/unpaid work. A subset of these outcome measures was collected from former patients 2-5 years after assessment at 7 of the 11 specialist services. RESULTS: Baseline data at clinical assessment were available for 952 patients, of whom 440 (46.2%) provided 1-year follow-up data. Treatment data were available for 435/440 (98.9%) of these patients, of whom 175 (40.2%) had been discharged at time of follow-up. Therapy programmes varied substantially in mode of delivery (individual or group) and number of sessions. Overall change in health 1 year after first attending specialist services was 'very much' or 'much better' for 27.5% (115/418) of patients, 'a little better' for 36.6% (153/418), 'no change' for 15.8% (66/418), 'a little worse' for 12.2% (51/418), and 'worse' or 'very much worse' for 7.9% (33/418). Among former patients who provided 2- to 5-year follow-up (30.4% (385/1265)), these proportions were 30.4% (117/385), 27.5% (106/385), 11.4% (44/385), 13.5% (52/385), and 17.1% (66/385), respectively. 85.4% (327/383) of former patients responded "Yes" to "Do you think that you are still suffering from CFS/ME?" 8.9% (34/383) were "Uncertain", and 5.7% (22/383) responded "No". CONCLUSIONS: This multi-centre NHS study has shown that, although one third of patients reported substantial overall improvement in their health, CFS/ME is a long term condition that persists for the majority of adult patients even after receiving specialist treatment.

Adult patients' experiences of NHS specialist services for chronic fatigue syndrome (CFS/ME): a qualitative study in England.

BACKGROUND: Few studies have explored patients' experiences of treatment for CFS/ME. This study aims to fill this gap by capturing the perspective of patients who have been treated by NHS specialist CFS/ME services in England. METHODS: Semi-structured interviews were conducted during the period June-September 2014 with 16 adults who were completing treatment at one of three outpatient NHS specialist CFS/ME services. Interviews were analysed thematically using constant comparison techniques, with particular attention paid to contrasting views. RESULTS: Three themes were identified: 'Journey to specialist services'; 'Things that help or hinder treatment'; and 'Support systems'. Within these themes nine sub-themes were identified. A wide range of factors was evident in forming participants' experiences, including personal characteristics such as perseverance and optimism, and service factors such as flexibility and positive, supportive relationships with clinicians. Participants described how specialist services played a unique role, which was related to the contested nature of the condition. Many participants had experienced a lack of validation and medical and social support before attending a specialist service. Patients' experiences of life before referral, and the concerns that they expressed about being discharged, highlighted the hardship and obstacles which people living with CFS/ME continue to experience in our society. CONCLUSIONS: The experiences of CFS/ME patients in our study showed that NHS specialist CFS/ME services played a vital role in patients' journeys towards an improved quality of life. This improvement came about through a process which included validation of patients' experiences, acceptance of change, practical advice and support, and therapeutic outcomes.