Neurology data profiles

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1 NHS Harrow CCG Improving the quality of life for people with neurological conditions Neurology data profiles Guidance for CCGs: our top tips for improving the efficiency of neurological services Dr Nick Losseff, Clinical Director, Neuroscience SCN, NHS England, London Region Michael Oates, Quality Improvement Manager, Neuroscience SCN, NHS England, London Region Cerrie Baines, Project Manager, Neuroscience SCN, NHS England, London Region Ellen Keely, Analyst, NHS England, London Region March

2 This guide This guide has been designed to help CCGs identify high impact areas for service improvement that will help improve the quality of life for people with neurological conditions and at the same time improve the efficiency and value for money of services. We have identified three key areas from an analysis of 2013/14 data available to NHS England, audits and reviews from neurological charities, national reviews and the work of the London Neuroscience Clinical Network. This guidance can support the development of sustainability and transformation plans, annual operation plans, specifications and other service development. There are over 255,000 people in London living with a neurological condition (excluding migraine (1.7 million more), dementia and stroke); that is double the number of people living with cancer, 30% more than the number of people with coronary heart disease or chronic kidney disease, 70% more than the number of people with cardiovascular disease 1. Although neurological conditions account for 10% of all hospital, 17% of all and 10% of consultations in care their profile has been low. Commissioning levers are still lacking and improving care will be down to local enthusiasm and good working partnerships. To facilitate this we have identified local neurology contacts so if you wish to discuss local neurological issues please contact the Network. There are already great examples of joint working in London: Bromley: community neuro-rehabilitation team, community headache service Camden: out of hospital care neurological services Harrow: epilepsy pathway Focus for activity and planning Unplanned : Sixty-three percent of the neurology budget is spent in secondary care of which half is unplanned. Many are for co-morbidities that could have been prevented. Use of outpatient appointments and access to neurological opinion: London has the highest rate of referral to outpatient appointments in England. Thirty percent of common neurological conditions referred to outpatients could have been managed in care. Potential saving for London 3 million. specialist. Non-specialised assessment and care of patients with neurological conditions in a secondary care setting: No hospital in London was identified where patients with a neurological diagnosis were systematically admitted under a neurology specialist. Impact on admission, length of stay, timely diagnosis, and appropriate treatment. Data profile for your CCG Report: Focus for activity and planning, pages 3-5 CCG data, pages 6-8 Appendix 1 What neurology patients want, page 9 Appendix 2 Charity review of personalised care plans, page 10 Appendix 3 Charity review of Clinical nurse specialists, page 11 Appendix 4 Common conditions: estimated burden and cost saving, page 12 Appendix 5 Outpatient referral rates benchmarked all England, page 13 Appendix 6 Neurology metadata definitions, pages London Neuroscience Strategic Clinical Network, Data profile: London and CCGs,

3 1. Unplanned for people with chronic neurological conditions Key fact Thirty three percent of the neurology programme budget is spent on unplanned secondary care. Fifty percent of this is attributable to multiple sclerosis (MS), Parkinson s, migraine and epilepsy. Key data Emergency per 100,000 for all neurological conditions with or without co-morbidities e.g. urinary tract infection. Harrow 2,080 per 100,000 (all non -elective / all age CCG (HSCIC) x 100,000) England average 2,363 per 100,000 (all non -elective / all age England (HSCIC) x 100,000) Primary non elective per 100,000 - where the diagnosis has been identified as a neurological condition. Harrow 317 per 100,000 (all non- elective diagnosis / all age CCG (HSCIC) x 100,000) London average 335 per 100,000 Comment Individuals living in the community with a neurological condition will at some point experience a deterioration of their condition that will require an admission or acute management. Many will be for a co-morbidity that with better self-management or community support could have been prevented. The highest admission rates are for epilepsy, headache and Parkinsonism (See London: Comorbidities with highest incidence, page 8). In 2013/14 the number of non-elective () hospital for people with MS in England was 23,665; costing the NHS over 43 million and (average 1,820 per admission). Non-elective care accounted for 46% of the overall spend on care for people with MS in hospital, whilst accounting for only 27% of the total, and therefore represents a large opportunity to reduce cost. Urinary tract infections accounted for 14% of MS (compared with only 3% of the and cost an average 2,556 per admission). The total cost for all bladder and bowel related MS in 2013/14 were more than 11m. Respiratory complications accounted for more than 5.5m of nonelective MS admission costs in 2013/14. 2 Potential solutions Tip 1. Tip 2. Tip 3. Tip 4. Tip 5. Tip 6. Identify all patients with a chronic neurologic condition in the. Plans are agreed of how and when patients with such conditions are adopted into local existing integrated care models. These models should deliver risk stratification, prospective case management and strategies to manage unpredictable deterioration. These patients are at high risk of unplanned care Review the major co-morbidities for neurological patients resulting in an A&E attendance or admission and commission improved support and treatment pathways Strengthen community neurology services to provide effective self-management, needs led interventions (urgent and routine) and case management Improve access to clinical nurse specialists and allied health professionals Improve access to local secondary care neurologic systems Implement personalised care plans Appendix 1 What neurology patients want, page 9 Appendix 2 Charity review of personalised care plans, page 10 Appendix 3 Charity review of Clinical nurse specialists, page 11 2 Measuring the burden of hospitalisation in multiple sclerosis: a cross sectional analysis of English , Multiple Sclerosis Trust. 3

4 2. Inefficient use of neurology outpatient appointments Key fact London has the highest referral rates for consultant neurology outpatient appointments in England. Key data New outpatient neurology appointments for those aged 20+ DSR per 100,000 (consultant) Harrow 1,399 per 100,000 England average per 100,000 Comment These high rates can clog up outpatient appointments for those needing timely specialist advice and pushing the burden onto non-specialised A&E assessment. The London Neuroscience Clinical Network s common conditions workstream estimated that 30% of outpatient appointments for patients with headache, dizzy spells and faints could have been managed in care. See Appendix 4 for QIPP estimate of burden and savings, page 12. However, some neurological conditions can be difficult to diagnose and delays in accessing a neurological specialist, are widely cited in the literature as an area that needs improvement 3. Potential solutions Tip 7. Tip 8. Promote educational campaign on common neurological conditions that can be managed in care and link video guides for common neurological conditions to your website/gp IT systems. See for video guides. Develop QIPP for referrals for common conditions. Consider GP practice/federation leads for common conditions e.g. GPwSI. Develop pathways with local providers that enable access to expertise to triage patients with difficult symptoms or patients not responding to treatment. The approach should also support the management of common neurologic conditions within care. Appendix 4 Common conditions: estimated burden and cost saving, page 12 Appendix 5 Outpatient referral rates benchmarked all England, page 13 Useful data source. See for outpatient data benchmarking tool 3 National audit office report

5 3. Non-specialised assessment and care of patients with neurological conditions in secondary care setting Key fact no hospital in London was identified where patients with a neurological diagnosis were systematically admitted under a neurology specialist. 4 Key Data Mean Length of Stay (LOS) in days ( ) Harrow 3.7 days London 5 days Comment Most patients with an acute neurologic illness are not primarily managed by neurological specialists but by general physicians, geriatricians, or ITU staff with or without advice through consultative visits or by telephone support from regional centres. The longstanding neurological service structure and peripatetic organisation of neurologists job plans explains the low numbers of neurologists particularly at acute general hospital level, and in addition this is compounded by unresponsive access to vital diagnostic tests e.g. MRI. Acute neurology pilots have taken place in London where neurologists have been working with A&E departments helping to reduce and LOS, provide urgent treatment, and if people are admitted as an inpatient they are done so under neurology ownership. Other documentary evidence has identified higher levels of misdiagnosis and inappropriate treatment when a neurologist is not accessed early. Potential solutions Tip 9. Emergency access is commissioned for patients with serious neurological conditions to facilities with appropriate expertise. This would require collaborative discussions with other commissioners and providers around regional models; such have been developed for stroke. CCGs / NHS England should seek expressions of interest for early adopters / evaluators of local secondary acute neurology services, in which patients assessed and admitted from departments, are managed by appropriately trained neurology personnel from the outset of their care. The London Neuroscience Clinical Network established a pilot to evaluate the benefits of Hyper Acute Neurology Units in Early analysis shows a considerable benefit to early specialised opinion based on quality and efficiency of care. Hyper acute neurology unit will provide 24/7 access to appropriate neurologic expertise and care. It will support patients attending through the A&E pathway or requiring an urgent intervention by ensuring they are managed at the outset by neurological specialists not general physicians, provide immediate specialist diagnostics, rapid management and discharge to appropriate services, and support other services through advice and telemedicine. 4. Conclusion and recommendation The London Neuroscience Clinical Network has identified three areas for focus for CCG attention that we believe would improve local neurological services. For this to happen we encourage dialogue between the CCG and their local neurology lead. Tip 10. Get in touch with your local neurology lead through the Network. Contact: England.london-scn@nhs.net 4 London Neuroscience Clinical Network secondary care audit 2014 and case for change for acute neurology,

6 Harrow data 2013/14 How well is your CCG performing against the London base rate? This chart summarises Harrow CCGs performance on a number of Neurology indicators compared to the London average. How much is your CCG spending compared to the London base rate? 6

7 Table 1. Neurology indicators for Harrow compared to the London average 7

8 London Co-morbidities Comorbidities with highest incidence: Epilepsy Caries limited to enamel, Convulsions, UTIs. MS UTIs, Unhibited neuropathic bladder. Parkinson s Tetany, UTIs Neuropathies Cervical disc disorder with myelopathy Cerebral Palsy epilepsy, loose joint, convulsions Headaches and migraines Anaemia complicating pregnancy 8

9 Appendix 1 What do people with neurological conditions want? Neurological Alliance: patient survey, 2014 Care that puts the person and their carers at the centre of the process and supports them to make informed decisions To self-manage and maintain independence Early recognition, prompt and accurate diagnosis Equal access to treatment and care, integrated and coordinated across all settings Care closer to home and not in a medical environment Specialist coordinator role to provide integrated care pathways (including out-of-hospital services) Clear local commissioning plans for neurology and allied services, drawing on better understanding of neurology (including the role for the voluntary and community sector perhaps in needs assessment/planning and design) Stronger focus on preventative services and better use/understanding of, for example, community services, physical therapies, psychological support services Their views and experiences to be heard when planning care pathways Specialist neurological understanding among GPs, commissioners and NHS staff Easily accessible information about support networks and condition related issues for both patients and professionals (many professionals don t know what help is available to offer to patients) Community and vocational support to be provided End of life care plan; to die with dignity Risk stratification tools to identify those at risk Support for carers and families. 9

10 Appendix 2 Charity review of personalised care plans There is growing evidence that approaches to person-centred care such as shared decision making and self-management support can improve a range of factors including patient experience, care quality and health outcomes (Health Foundation, 2014:11). Research has demonstrated that when people play a more collaborative role in managing their health and care they are less likely to use hospital services (De Silva, 2011) and are more likely to stick to their treatment plans (De Silva, 2012) and take their medicine correctly (National Institute of Health and Care Excellence, 2009). Effective care planning and coordination is an essential aspect of care for people living with a long term health condition. The National Service Framework for Long-Term Conditions recommended that people with long-term neurological conditions are offered integrated assessment and planning of their health and social care needs (Department of Health, 2005:4). 71.5% (4,603) of respondents have not been offered a care plan to help manage their condition. (1) Only 14% (128/947) of people with epilepsy report have a written care plan. (2) Sources 1. The invisible patients revealing the state of neurology services, 2015, Neurological Alliance. 2. Epilepsy in England - the local picture, 2014, Epilepsy Action. 10

11 Appendix 3 Charity review of Clinical nurse specialists Most specialist neurological nurses are disease specific. They can improve the quality of care and lower its cost, mainly by reducing unnecessary and reducing consultant neurologist outpatient demand, thus freeing capacity for complex cases. MS specialist nurses (MSSN) are the professionals that the most people with Multiple Sclerosis (MS) (78%) have seen about their MS in the past year. 51% of people with MS reported that they had seen a neurologist in the past year about their MS. However, 10% said they had seen neither, and hence had not had the specialist annual review recommended by NICE.(3) Using conservative assumptions, the Generating Evidence in Multiple Sclerosis Services (GEMSS) data suggests that each WTE MSSN participating in GEMSS has saved 77.4k in ambulatory care costs (GP appointments, neurology appointments and A&E visits) during the year. Whilst reductions in are difficult to measure, we can be confident that MSSNs reduce and that the savings generated are likely to far exceed the costs of employing them. (3) Parkinson s nurses are essential to deliver expert, accessible care for people with Parkinson s at all stages of life. On average a nurse can save each year: 43,812 in avoided consultant appointments, 80,000 in unplanned to hospital, 147,021 in days spent in hospital. (4) Only half (52%, 475/905) of people with epilepsy told us that they have seen an epilepsy specialist nurse. (2) Access to specialists also plays a key role those with access to an MSSN or neurologist are more than twice as likely to be taking a disease modified drug. (2) Sources 2. Epilepsy in England - the local picture, 2014, Epilepsy Action. 3. Evidence for multiple sclerosis specialist service: findings for GEMSS evaluation project, 2015 (Generating Evidence in Multiple Sclerosis Services) 4. Parkinson s nurses affordable, local, accessible and expert care. A guide for commissioners in England,

12 Appendix 4 Common conditions: estimated burden and cost saving Potential savings: Current data on outpatients is not broken down by condition and not all patients with a common neurological symptom will be seen in a neurological clinic, for example some may be seen in an ENT clinic. The outpatient figure used also does not include nurse led appointments. However, from the data available and the experience of the Network s neurologists we have estimated the following financial saving. 4,900 per 100,000 Headache Dizzy spells TLoC How common. 20,000 per 100,000 Syncope: 930 per 100,000 GP 5 6 attendances (note total incidence is 1810: 100,000 - many patients do not go to their GP) Epilepsy: 562 per 100,000 7 Total number of first outpatient appointments 8 80,708 Percent estimate of patients attending outpatients with 30percent 15percent 15percent the symptom 9 Percent estimated waste of those attending8 30percent 30percent 25percent Cost of outpatient Cost saving of proportion of patients not needing neurology outpatient services 1,590, , ,815 Total saving 3,048,947 Potential saving of 95,000 per CCG 5 London Strategic Clinical Network, London Neurology Profile, November Based on British Association for the Study of Headache estimate. Available from: 6 Neuhauser, HK (2007) Epidemiology of Vertigo, Current Opinion in Neurology, 20(1):40-6. Based on 1-year prevalence estimates for vertigo. Available from: 7 London Strategic Clinical Network, London Neurology Profile, November Based on numbers of people on GP lists in London registered with epilepsy. Available from: Perception of neurologists on their out-patient clinics (Straw poll of neurologists involved in Network projects) 10 Payment by Results 2014/15 Tariff for first attendance single/multi professional neurology outpatient appointment. 12

13 Appendix 5 Outpatient referral rates benchmarked all England 13

14 Appendix 6 Neurology metadata definitions Indicator Definition Data source Definition of numerator Definition of denominator Methodology Caveats Epilepsy pathway indicators Prevalence of epilepsy Percentage of patients with epilepsy on drug treatment and seizure free The number of people aged 18 years and over receiving drug treatment for epilepsy recorded on practice registers as a proportion of all people (18+) registered in the CCG. Proportion of individuals aged 18 years and over receiving drug treatment for epilepsy recorded on practice register who have been seizure free in the last 12-months Health & Social Care Informatio n Centre (HSCIC). Health & Social Care Informatio n Centre (HSCIC). The number of people aged 18 years and over receiving drug treatment for epilepsy recorded on practice register. The number of people aged 18 years and over receiving drug treatment for epilepsy recorded on practice register seizure free in the last 12- months 18+ years CCG registered The number of people aged 18 years and over receiving drug treatment for epilepsy recorded on practice register including exceptions. Number on register for divided by 18+ registered in CCG Divide the number seizure free by the total number on the CCG register. QOF statistics are generally considered to be complete and robust. However, there may be a question regarding the quality of external cause coding. QOF statistics are generally considered to be complete and robust. However, there may be a question regarding the quality of external cause coding. Length of stay after an admission for epilepsy. Average length of stay (calculated as a mean number of days) after an admission for epilepsy. Sum of total length of stay for epilepsy Total number of epilepsy Sum of length of stay after epilepsy admission divided by total epilepsy. HES inpatient data is generally considered to be complete and robust. However, there may be a question regarding the quality of external cause coding. Some of these cases may represent for observation due to observed symptoms following an external cause event. There may be differences in admission thresholds. There may be variation between Trusts in the way hospital are coded. There may be variation in data recording completeness. 14

15 Neurological Indicators Non Elective (per 100,000 pop) The number of non- elective to hospital with a diagnosis of a specific neurological condition, expressed as a crude rate per 100,000 (CCG responsible ) Inpatient Count of nonelective for specific neurologica l conditions; diagnosis; CCG responsible All age CCG registered Non elective admission data divided by CCG registered, result multiplied by 100,000 for rate Waiting time for elective (days) The average number of wait days for those electively admitted to hospital for a Neurological condition Inpatient Total sum of wait days for elective Total number of elective The total sum of wait days for those electively admitted to hospital divided by the total number of elective Elective (per 100,000 pop) The number of elective to hospital with a diagnosis of a specific neurological condition, expressed as a crude rate per 100,000 (CCG responsible ) Inpatient Count of elective for specific neurologica l conditions; diagnosis; CCG responsible All age CCG registered Elective admission data divided by CCG registered, result multiplied by 100,000 for rate HES inpatient data is generally considered to be complete and robust. However, there may be a question regarding the quality of external cause coding. Some of these cases may represent for observation due to observed symptoms following an external cause event. There may be differences in admission thresholds. There may be variation between Trusts in the way hospital are coded. There may be variation in data recording completeness. Proportion of patients admitted with a neurology diagnosis that are managed by a consultant neurologist In-patient where the specialist code was recorded as consultant neurologist. The main specialty code for Neurology is 400. Inpatient Percentage of Finished Admission s with diagnosis for specified neurologica l conditions managed by consultant neurologist. Specialist code was recorded as consultant neurologist (400). Number of finished admitted episodes for a diagnosis of specified neurological condition by CCG of residence. Total Neurology managed by a Neurologist consultant divided by the total Primary Neurology. 15

16 Total bed days Total number of bed days for all neurological per 100,000 Inpatient Total sum of episode duration for both non elective and elective All age CCG registered Total sum of episode duration divided by total, result multiplied by 100,000 for rate Emergency Epilepsy bed days The sum of individual hospital lengths of stay following an admission where the diagnosis was for Epilepsy per 100,000 Inpatient Sum of individual hospital length of stay following an admission where the diagnosis was for Epilepsy. Number of patients registered at a GP practice - April Emergency Epilepsy bed days divided by CCG registered, result multiplied by 100,000 for rate HES inpatient data is generally considered to be complete and robust. However, there may be a question regarding the quality of external cause coding. Some of these cases may represent for observation due to observed symptoms following an external cause event. There may be differences in admission thresholds. There may be variation between Trusts in the way hospital are coded. There may be variation in data recording completeness. Emergency CNS infection bed days The sum of individual hospital lengths of stay following an admission where the diagnosis was for CNS conditions per 100,000 Inpatient Sum of individual hospital length of stay following an admission where the diagnosis was for a CNS infection. Number of patients registered at a GP practice - April Emergency CNS infection bed days divided by CCG registered, result multiplied by 100,000 for rate DSR of (Primary Diagnosis) (Epilepsy, Headaches and Migraines, MS, Parkinson s) Age standardised rate of to hospital due to specific condition with a diagnosis, for those aged 20+ (CCG resident ). Count of for each condition using specific diagnosis codes; 20+ years by CCG resident. 20+ years CCG resident Admission data obtained from HES Inpatient data by ICD10 codes described in: k//resource/view.aspx?rid= and standardised by CCG resident against European Standard Population Rate per 100,000. HES inpatient data and ONS statistics are generally considered to be complete and robust. However, there may be a question regarding the quality of external cause coding. Some of these cases may represent for observation due to observed symptoms following an external cause event. There may be differences in admission thresholds. There may be variation between Trusts in the way hospital are coded. There may be variation in data recording completeness. 16

17 Mean length of stay Average length of stay (days) when admitted to hospital with a diagnosis of a neurological condition Inpatient Sum length of stay (days) for episodes with a diagnosis for a neurologica l condition. Count of completed inpatient episodes with a diagnosis of a neurological condition. Total length (days) of completed spells divided by the number of spells. Budget indicators Payment by Results Neurology Programme Budget ( ) Spend of the neurology programme budget for each care setting per 100,000 weighted 2013/14 Program me Budgetin g Benchma rking Tool Expenditur e data are taken from the CCG programme budgeting returns. Programme budgeting returns represent a subset of overall NHS expenditur e data. All age CCG registered Calculated by dividing the expenditure on own by the selected CCGs and multiplying by 1000 to allow benchmarking with other CCGs. Payment by Results tariffs do not include non-mandatory prices and some activity is excluded from PbR and remains subject to local prices. Primary prescribing: Primary care activity relating to prescribing or pharmaceutical services, excluding those which relate to prevention/health promotion. Outpatient: Outpatient attendances or procedures. High cost/ Unbundled: Expenditure on adult, neonatal and paediatric critical care (allocated via the diagnosis of the normal inpatient admission). Expenditure on high cost/unbundled drugs and devices, and other. Community and Integrated care: Care delivered outside of a hospital and within local communities. Activity carried out within community hospitals should be classified as secondary care activity. 17

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