Individual Funding Requests Research Articles

Individual Funding Requests: A flawed process.

Individual Funding Requests: A flawed process.

Challenging NHS England's individual funding request policy

Challenging NHS England's individual funding request policy

Reforms to Individual Patient Funding Request system in Wales approved

Reforms to Individual Patient Funding Request system in Wales approved

Implementation of national body contouring surgery guidelines following massive weight loss: A national cross-sectional survey of commissioning in England

National guidelines for commissioning of body contouring surgery (BCS) following massive weight loss (MWL) in England were published in 2014. Nearly three-quarters of patients who have MWL seek BCS; however, access is known to vary according to the region. The aim of national guidelines was to standardise access. The purpose of this study was to determine implementation of the national guidelines by clinical commissioning groups (CCGs) in England. A cross-sectional, web-based survey was sent to all CCG chairs in England. Of 211 potential respondents, 108 completed the survey or provided funding guidelines (response rate=52%). Eight CCGs (7%) had implemented the guidelines. A total of 69 CCGs were aware of the new guidelines (64%), and 66 CCGs stated that they fund BCS after MWL (61%). A total of 81 CCGs (75%) identified local funding guidelines, while 15 CCGs (14%) cited individual funding requests (IFRs) as the means of accessing funding. To improve patient access to BCS; 58 of 65 respondents (89%) stated cost-effectiveness, whereas 56 of 75 respondents (75%) thought patient-reported outcome measures were key. Qualitative data to improve access included an integrated pathway from bariatric surgery to BCS, an improved evidence base and greater CCG finances. One CCG stated that it cannot afford to fund cosmetic procedures. The purpose of national guidelines was to simplify the pathway to BCS after MWL and create fair distribution of funds across the country to needy patients; however, their uptake has been poor. Access to funding for BCS across England varies according to the location.

TOLVAPTAN USE IN SEVERE NEONATAL AUTOSOMAL DOMINANT POLYCYSTIC KIDNEY DISEASE (ADPKD): THE PHARMACEUTICAL CHALLENGE

BackgroundUnlicensed medications are used all the time in the management of diseases in childhood. Tolvaptan (Jinarc®) is a vasopressin V2-receptor antagonist licensed for use to slow the progression of cyst...

Cost impact of a non-invasive, portable device for patient self-administration of chronic migraine in a UK National Health Service setting.

BackgroundChronic migraine (CM) is a neurological disorder associated with substantial disability. Botulinum toxin type A (Botox) is an approved and effective preventive treatment option for adult patients with CM. Transcranial magnetic stimulation (TMS) is an alternative treatment device delivering a brief pre-set magnetic pulse used for self-administration by the patient at home. Despite being available in a risk share scheme TMS is perceived to be more costly in the UK. The objective of this study was to analyse the incremental costs of TMS compared to Botox in refractory CM patients both for a UK individual funding request setting as well as for an average UK specialist center setting.MethodsCost impact results were derived from a decision-tree model simulating treatment pathways over 1 year. Costs were applied from the most recently available UK data sources. Sensitivity analysis was performed for all variables.ResultsBased on published utilisation data 45.5 % of CM patients would continuously receive Botox over 1 year, whereas 53.7 % of TMS patients would be still on treatment at the end of year one. Total costs of Botox treatment accrue to £2923 in an individual funding request NHS cost setting, whereas TMS treatment results in £1466 in the first year. Applying a time-based NHS cost setting expenditures accrue to £1747 for the Botox treatment and to £1361 for the TMS treatment. In both cost settings variation of cost assumptions did have a minor impact on the cost increment from Botox to TMS.ConclusionThe current risk share based remuneration model of TMS allows the UK NHS to reimburse only the cost of those patients experiencing reduction in migraine days resulting in lower costs for treating migraine attacks. Treatment of chronic refractory migraine using TMS implies a substantial cost reduction potential for the management of chronic treatment of refractory migraine patients compared to conventional Botox treatment.

Individualised and personalised QALYs in exceptional treatment decisions.

Quality-adjusted life years (QALYs) are used to determine how to allocate resources to health programmes or to treatments within those programmes in order to gain maximum utility from those limited, shared healthcare resources. However, if we use those same population- based QALYs when faced with individual treatment decisions we may act unjustly in relation to that individual or in relation to the wider population. A treatment with a population-based incremental cost-effectiveness ratio beyond our willingness to pay threshold may be denied to a patient even if, for that particular patient, the QALYs gained for the cost would fall within that threshold. When considering individual cases, it is proposed that we should take an individualised approach to the cost of treatment and response to treatment ('individualised QALYs') and a personalised approach to the valuation of health states ('personalised QALYs'). Only if we do this, can we maximise utility and give the patient a fair opportunity to benefit. Individualised and personalised QALYs also allow us to express patient choice and religious treatment preferences in terms of utility. Individualised and personalised QALYs are explored in the context of individual funding requests in the National Health Service. In preference to the concept of 'clinical exceptionality', individualised and personalised QALYs provide the potential for better and more consistent decisions and improved utility. Rather than treating unequal patients as if they were equal, individualised and personalised QALYs promote fair and unequal access to resources for some of our most unequal patients. Potential challenges are also considered.

The “postcode lottery” for the surgical correction of gynaecomastia in NHS England

IntroductionAction On Plastic Surgery (AOPS) criteria for funding of gynaecomastia surgery are: the patient should be post-pubertal, have a BMI ≤ 25 kg/m2, endocrine and drug causes and breast cancer should be excluded and the patient should demonstrate psychological distress. We evaluated how NHS funding for gynaecomastia surgery varies between Clinical Commissioning Groups (CCGs) in England and whether there is a “postcode lottery”. MethodsThe gynaecomastia surgery policies for 211 CCGs in NHS England were reviewed against the AOPS criteria and grouped according to their funding policies: group 1 (if criteria met, funding approved); group 2, (if criteria met, prior approval required); group 3 (no criteria, individual funding request only) and group 4 (no funding). ResultsPolicies were available for all CCGs. Fifty-nine (28.0%) CCGs were in group 1, 87 (41.2%) in group 2, 44 (20.9%) in group 3 and 21 (10.0%) in group 4. Of those in groups 1 and 2, five (3.4%) CCGs used all six AOPS criteria. Approximately 70% CCGs with criteria (in groups 1 and 2) stipulated that the patient should be post-pubertal, have a BMI ≤ 25 kg/m2 and endocrine and drug causes should be excluded. Breast cancer should be excluded in 51.4% and the patient should show psychological distress in 13.7% CCGs. Of those in groups 1 and 2, 118 (80.8%) CCGs specified additional criteria. ConclusionsCCGs do not use the AOPS criteria uniformly and restrict surgery according to their own criteria. Overall, there is a “postcode lottery” for gynaecomastia surgery within NHS England.

'Cosmetic boob jobs' or evidence-based breast surgery: an interpretive policy analysis of the rationing of 'low value' treatments in the English National Health Service.

BackgroundIn England the National Health Service (NHS) is not allowed to impose ‘blanket bans’ on treatments, but local commissioners produce lists of ‘low value’ procedures that they will normally not fund. Breast surgery is one example. However, evidence suggests that some breast surgery is clinically effective, with significant health gain. National guidelines indicate the circumstances under which breast surgery should be made available on the NHS, but there is widespread variation in their implementation.The purpose of this study was to explore the work practices of ‘individual funding request’ (IFR) panels, as they considered ‘one-off’ funding requests for breast surgery; examine how the notion of ‘value’ is dialogically constructed, and how decisions about who is deserving of NHS funding and who is not are accomplished in practice.MethodsWe undertook ethnographic exploration of three IFR panels. We extracted all (22) breast surgery cases considered by these panels from our data set and progressively focused on three case discussions, one from each panel, covering the three main breast procedures.We undertook a microanalysis of the talk and texts arising from these cases, within a conceptual framework of interpretive policy analysis.ResultsThrough an exploration of the symbolic artefacts (language, objects and acts) that are significant carriers of policy meaning, we identified the ways in which IFR panels create their own ‘interpretive communities’, within which deliberations about the funding of breast surgery are differently framed, and local decisions come to be justified. In particular, we demonstrated how each decision was contingent on [a] the evaluative accent given to certain words, [b] the work that documentary objects achieve in foregrounding particular concerns, and [c] the act of categorising. Meaning was constructed dialogically through local interaction and broader socio-cultural discourses about breasts and ‘cosmetic’ surgery.ConclusionDespite the appeal of calls to tackle ‘unwarranted variation’ in access to low priority treatments by ensuring uniformity of local guidelines and policies, our findings suggest that ultimately, given the contingent nature of practice, this is likely to remain an illusory policy goal. Our findings challenge the scientistic thinking underpinning mainstream health policy discourse.

PC.116 Palivizumab usage in preterm infants with chronic lung disease

BackgroundCertain patient groups are deemed as ‘high-risk’ of developing severe and fatal RSV infection including premature infants with CLD and CHD. Palivizumab has been reported to be safe and effective...

The “postcode lottery” for the surgical correction of gynaecomastia in NHS England

Abstract Introduction Action On Plastic Surgery (AOPS) criteria for funding of gynaecomastia surgery are: the patient should be post-pubertal, have a BMI ≤ 25 kg/m 2 , endocrine and drug causes and breast cancer should be excluded and the patient should demonstrate psychological distress. We evaluated how NHS funding for gynaecomastia surgery varies between Clinical Commissioning Groups (CCGs) in England and whether there is a postcode lottery. Methods The gynaecomastia surgery policies for 211 CCGs in NHS England were reviewed against the AOPS criteria and grouped according to their funding policies: group 1 (if criteria met, funding approved); group 2, (if criteria met, prior approval required); group 3 (no criteria, individual funding request only) and group 4 (no funding). Results Policies were available for all CCGs. Fifty-nine (28.0%) CCGs were in group 1, 87 (41.2%) in group 2, 44 (20.9%) in group 3 and 21 (10.0%) in group 4. Of those in groups 1 and 2, five (3.4%) CCGs used all six AOPS criteria. Approximately 70% CCGs with criteria (in groups 1 and 2) stipulated that the patient should be post-pubertal, have a BMI ≤ 25 kg/m 2 and endocrine and drug causes should be excluded. Breast cancer should be excluded in 51.4% and the patient should show psychological distress in 13.7% CCGs. Of those in groups 1 and 2, 118 (80.8%) CCGs specified additional criteria. Conclusions CCGs do not use the AOPS criteria uniformly and restrict surgery according to their own criteria. Overall, there is a postcode lottery for gynaecomastia surgery within NHS England.

Publish or be damned: Individual Funding Requests and the publicity condition

Many jurisdictions have processes to consider Individual Funding Requests but, with few exceptions, the decisions made with respect to these are not made public. Drawing upon Daniels and Sabin's account...

Being ‘rational’ and being ‘human’: How National Health Service rationing decisions are constructed as rational by resource allocation panels

The English National Health Service Constitution states that patients have the right to expect all decisions about access to medicines and treatments to be made 'rationally'. Rationality in health care can be framed as instrumental, institutional or practical. In this article, we present a case example from an ethnographic study of the work of 'Individual Funding Request' panels to explore how rationality is enacted and accounted for in deliberations about the rationing of health care in the National Health Service. Our rhetorical analysis highlights how an embodied, practical rationality emerges as a significant aspect of rationality in practice, but at the same time has a problematic status in formal accounts of decision-making. We suggest that being both 'human' and 'rational' is a 'delicate balance' and creates a dilemma for Individual Funding Request panels. Aristotle's notion of phronesis provides a useful lens for theorising our observation of panel deliberations, and we argue for greater attention to the value of narrative ethics in helping us understand the challenges faced by resource allocators.

PHP113 - The Future of Individual Funding Requests in Clinical Commissioning Groups Era

PHP113 - The Future of Individual Funding Requests in Clinical Commissioning Groups Era

FRI0415 Effectiveness of sequential biologic use in psoriatic arthritis: results of a large uk-based retrospective survey

BackgroundTreatment of psoriatic arthritis (PsA) has been revolutionized by the use of tumour necrosis factor inhibitors (TNF). The National Institute for Health and Clinical Excellence (NICE) is the health authority...

Affordability as a discursive accomplishment in a changing National Health Service

Health systems worldwide face the challenges of rationing. The English National Health Service (NHS) was founded on three core principles: universality, comprehensiveness, and free at the point of delivery. Yet patients are increasingly hearing that some treatments are unaffordable on the NHS. We considered affordability as a social accomplishment and sought to explore how those charged with allocating NHS resources achieved this in practice. We undertook a linguistic ethnography to examine the work practices of resource allocation committees in three Primary Care Trusts (PCTs) in England between 2005 and 2012, specifically deliberations over ‘individual funding requests’ (IFRs) – requests by patients and their doctors for the PCT to support a treatment not routinely funded. We collected and analysed a diverse dataset comprising policy documents, legal judgements, audio recordings, ethnographic field notes and emails from PCT committee meetings, interviews and a focus group with committee members. We found that the fundamental values of universality and comprehensiveness strongly influenced the culture of these NHS organisations, and that in this context, accomplishing affordability was not easy. Four discursive practices served to confer legitimacy on affordability as a guiding value of NHS health care: (1) categorising certain treatments as only eligible for NHS funding if patients could prove ‘exceptional’ circumstances; (2) representing resource allocation decisions as being not (primarily) about money; (3) indexical labelling of affordability as an ethical principle, and (4) recontextualising legal judgements supporting refusal of NHS treatment on affordability grounds as ‘rational’. The overall effect of these discursive practices was that denying treatment to patients became reasonable and rational for an organisation even while it continued to espouse traditional NHS values. We conclude that deliberations about the funding of treatments at the margins of NHS care have powerful consequences both for patients and for redrawing the ideological landscape of NHS care.

Access to the next wave of biologic therapies (Abatacept and Tocilizumab) for the treatment of rheumatoid arthritis in England and Wales: addressing treatment outside the current NICE guidance.

Patients in England and Wales with rheumatoid arthritis (RA) receive treatment from the National Health Service (NHS) with therapies approved by the European Medicines Agency (EMA), under guidance from the National Institute for Health and Clinical Excellence (NICE). This document overviews the current NICE guidelines for the treatment of RA and identifies scenarios when such guidance may not represent the optimum management strategy for individual patients. Specifically, we consider the use of tocilizumab or abatacept as the most appropriate treatments for some patients. In such scenarios, it may be possible for the clinician to secure access to the required therapy through an application procedure known as an ‘individual funding request’, the process of which is described in detail here. At present, it is unclear the extent to which the proposed reform of the NHS will affect the role of NICE in providing guidance and setting standards of care. Until the full impact of the proposed changes are realized, individual funding requests will remain a valuable way of securing the optimal treatment for all patients suffering from RA.Electronic supplementary materialThe online version of this article (doi:10.1007/s10067-011-1936-6) contains supplementary material, which is available to authorized users.

The deleterious impact of primary care-based commissioning on plastic surgery services and patients

The wide variation in the availability of treatments across the National Health Service (NHS) in England has led to a postcode lottery due to the rationing of available services by individual Primary Care Trusts (PCTs). In 2005 an NHS Modernisation Agency document, "Action on Plastic Surgery" was designed to aid PCTs making funding decisions on Plastic Surgery patients. Despite this and evidence in the Plastic Surgery literature, patients continue to experience difficulties in the primary care setting accessing our services.(3) The authors present two patients who presented to their GPs requesting to seen by the local Plastic Surgery service regarding their symptoms in an effort to explore the possible available treatment modalities. These patients were not referred and subsequently these patients operated upon themselves leading to complications which warranted inpatient management.

Yes, but ... * Comment on Dr R.L. Zimmern's Genomics and individuals in public health practice: are we luddites or can we meet the challenge?

Why did an outbreak of the familiar Escherichia coli serotype O104 suddenly become so deadly? Is the recent upsurge in tuberculosis in the UK due to local strains or to latent infection acquired abroad? Where did the H1N1 strain of influenza virus come from in 2009? Plainly, communicable disease control in the 21st century is rooted in microbial genomics. Without such understanding our plans will be faulty and our control measures weak or irrelevant. Knowledge of genomics is fundamental to professional practice. But how far does this requirement extend to the rest of public health practice—to efforts at health improvement and to the planning and organization of health services? Certainly genomics is now the basis for our understanding of disease processes and increasingly for therapeutics. Almost every issue of journals such as the Lancet and New England Journal of Medicine carries a paper reporting new molecular understanding of disease or differential response to drug therapy associated with a patient’s genotype. Drugs such as Ataluren have been designed to correct nonsense or missense mutations in Duchenne muscular dystrophy, cystic fibrosis and other disorders. Patients with rare diseases, and their clinicians, demand molecular diagnosis, with implications for the planning and funding of laboratory services, as well as the handling of individual funding requests. Molecular testing is now routine in many newborn screening programmes around the world: the UK National Screening Committee has expanded Wilson’s criteria to address the special issues raised by molecular screening.

A descriptive retrospective study into pharmacy led paediatric commissioning services when processing individual funding requests for PCTs

ObjectiveTo quantify the success of a Pharmacist led paediatric commissioning service in securing individual funding requests (IFR) to Primary Care Trusts (PCTs).MethodsDescriptive, retrospective study over a 4 month period by...