We live in an age of information, but information and knowledge are not synonymous. In the NHS in England, information is continually collected and the performance of the NHS judged by it. General practitioners know all too well how information collection in their job has moved from an occasional trawl through Lloyd-George notes in the interest of research and audit, through computerised record keeping and data collection, to payment according to the provision of data for national collecting houses, and then perhaps removal of payment. One national collector of data,the HSCIC,now has masses of data concerning neurology services but it doesn’t have local knowledge.
The Neurology Intelligence Network, part of Public Health England,will provide a publicly available source of data and an interpretation in order to improve the health and the services provided for those with neurological symptoms and illnesses. For intelligent commissioning there needs to be a combination of local knowledge and local and national information. That way commissioners can compare their own performance with similar geographies in the difficult task of caring for people with these disabling and often fatal illnesses. To give a taste of the content of this massive information store, this article presents just one of many hundreds of pieces of information and gives a glimpse into the difficulties in interpretation.
So here is a patchwork of shading, with the numbers behind that revealing a scarcely believable range in service provision. Some CCG areas, the lightest shade, received between 2 and 6 neurology appointments per 1000 residents, whilst others, the darkest shade, received between 13 and 20, a range beginning as low as 1.7 and ending as high as 19.8 per 1000 residents.Being unhealthily cynical,my next thought is to ponder data quality. Where do these figures come from? The numbers provided for the map excludes DNA’s and cancelled appointments. They are collected by PHE from all the CCGs in England,and the assumption is made that all the CCGs are doing it in the same way, even though it’s quite possible that they aren’t. Exposing and comparing the figures might encourage CCGs to communicate with each other and compare what they do or don’t include in their data collection; in doing so the quality and comparability should improve. If concern over data quality compels us to exclude the quintiles (or 40 CCG’s) at either end, there is still a range from 6 to 13 per 1000 adult population. There is very definitely not equitable access to a neurology outpatient opinion in the NHS.
A map of new patient appointments in neurology:
The map shows one year only so why take any notice? A new consultant appointment, an old consultant absence, a waiting list initiative, a newly introduced deterrent to referral or a newly offered open access to CT or MRI scans will all produce a swing in appointments attended. Local knowledge might help explain where one’s own CCG fits in the picture, but it could take every one of these factors working collectively to move a CCG from one end of the range to the other. The pattern of inequality shown here was also apparent in 2008 and hasn’t changed a great deal despite a doubling in the provision of neurology appointments.
If we accept the data collection as imperfect, and as a snapshot of service two years ago, can we see anything important? The inequality of provision is likely to be multifactorial with area demographics (for example age, sex, socio-economic and racial characteristics) determining the neurological need of an area,but need is clearly not the only factor that underlies neurological demand and provision. North London, perhaps through its proximity to large traditional neurological centres, is relatively well off for appointments. NearbyTower Hamlets and Newham however appear to benefit less from that proximity. London, in general, seems to be a lot better than elsewhere, and Cumbria and Doncaster do much worse.
For me, there are two nagging and related questions that are prompted by the numbers. The first is whether the inequality in provision produces inequality in neurology patients’ care and health. A CCG commissioner might reasonably respond to their area’s relative lack of appointments by asking to see the evidence for the value of more appointments. That evidence is, despite all the data being collected, simply not available at present. Outcomes are difficult to define and measure in all chronic disease, not just neurology. Is it fair to expect patients to wait for the evidence before we provide a service? We don’t ask for an RCT of a parachute. Sometimes things need to be done because it looks like they need to be done. The patients’ organisation, the Neurological Alliance,has published a report (3) of its survey on neurological services (see article on page 20). “The Invisible Patients” report tells us that 40% of respondents waited more than a year and that 31% saw their GP 5 times or more about their symptoms before seeing a neurology specialist (3).
It is of course important to question the worth of a Neurologist, and my response would be to delicately suggest a read of “What is the value of a neurologist” (4) a commentary from a colleague’s day that included diagnosing the unusual, breakingbadnews,counsellingafamily with genetic disease, and supporting the chronically sick; it might also have included a ward round, a visit to the medical admissions unit, some teaching, a little research, some agitating for better local neurology services and maybe, for the purposes of an upcoming appraisal, some compulsory reflection. It is probable that appointments for patients with neurological symptoms are provided in many areas by other specialties, or that in some areas patients are referred where in other areas those symptoms are perfectly managed by the GP without referral. There is no evidence either to compare the costs and efficacy of different specialties in managing different neurological symptoms. So the figures need to encourage the development of evidence to guide service development. The second question is to ask what would be the “right” number of new neurology appointments to be provided by a CCG. That number would be the number of patients within each area that develop neurological symptoms,that take those symptoms to the GP,that are assessed and referred according to their belief in the power of a specialist and that GP’s confidence,and then that the GP makes the choice to refer to neurology. So the right number will depend upon the demographics of the CCG, the gatekeeping of the GP and the perceived neurological competence of the local neurologists and the alternative specialists. Referral guidance and triage, good local interaction between primary and secondary care, GPwSI’s working closely with secondary care and community-based neurology nurses could all improve things, and hopefully can also start to provide the evidence to prove their worth to the local community. This, of course is where we came in; the acknowledgement that national information is important and interesting but may only be relevant in the context of local knowledge.
The Compendium of Neurological Data, England 2012-3 http://www. hscic.gov.uk/catalogue/PUB13776 (accessed Oct 2014). Copyright © 2013, Re-used with the permission of the Health and Social Care Information Centre. All rights Reserved.
The Neurology Fingertips Tool http://fingertips.phe.org.uk/profile-group/mental-health/profile/neurology (accessed Oct 2014). Neurology profiles produced by the Neurology Intelligence Network, cosponsored by Public Health England and NHS England. Crown copyright 2014.
The Neurological Alliance, The Invisible Patients; Revealing the state of neurology services. Jan 2015.