Long Term Neurological conditions

1. Long Term Neurological conditions Strategic Health Needs Assessment Greg.fell@bradford.nhs.uk Christopher.gibbons@bradford.nhs.uk

2. 1 Executive summary 2 Introduction 3 Prevalence and incidence a) Demographics b) Current numbers of patients with selected neurological illnesses Epilepsy PD MS MND c) Projected growth in prevalence 4 Health care utilisaiton and health outcomes and spending on health care a) Health care utilisation for neuro illness generally b) Epilepsy c) PD d) MS e) Others f) Programme Spend on Neurological Illness and economics. 5 Services in Bradford and Airedale a) Overview of current service model. Generalist and in each of main disease areas b) What are the priorities for service improvement and investment Guidelines and best practice in treatment of neurological illness a) National Service Framework b) NHS Scotland c) Association of British Neurologists d) Disease specific Clinical Guidelines (Epilepsy, MS, PD) Summary and key issues to address Data, epidemiology, service utilisation and outcome. District priorities for change Service configuration and model of care Commissioning and planning framework 8 Selected references Structure and contents

3. 1 Summary and key messages See Section at end To add when agreed through LTNC Steering Group

4. 2 Introduction Scope of neurological illness, and description of some specific illnesses What are ‘neurological services’Routes into neurological services Which groups of patients utilise what services Back to contentsBack to section head

5. Background and introduction • People with neurological illness have a disproportionately high burden of sensory loss, cognition and communication problems (carers burden and other issues to do with social and emotional well being of patients) • Neurosciences has a relatively low profile when compared with CV, cancer etc • This low profile is not helped by disparate nature of diseases and relatively disparate (if any planning arrangements across all neurological care) Back to contentsBack to section head

6. Characterisation of Neurological conditions. • It is expected that number of people with neuro conditions will grow significantly over next two decades. • Ageing, population growth are major factors in this. • Medical staff often have conflicting views on what services counted as neurology. Most frequently this definition includes: • Brain injury / Ep / MND • MS • PD / Stroke • agreement of this list is not universal. many other diseases and conditions also contribute to the workload of neurology Back to contentsBack to section head

7. Definition • No simple definition of a neurological disorder. It is usual to consider the following types of condition as neurological: • All structural disorders of the central nervous system (the brain and spinal cord) • All structural disorders of the peripheral nervous system (the nerves in the face, trunk and limbs). • Disorders involving muscle. • Certain common conditions, which are not necessarily caused by structural disease (such as many varieties of headache). • Other conditions (such as epilepsy, fainting and dizziness), which are often caused by disordered physiology, rather than abnormal anatomy. Back to contentsBack to section head

8. Implications for health and social care, and the economy. • Neurological illnesses range from slow progressive relapsing remitting conditions such as MS to acute onset brain injury – often with long term ramifications. • Thus flexibility of response in services is needed • Not all patients who have symptoms that can be classified as ‘neurological’ are seen by a neurologist • This work started as an assessment of need for ‘services for people with long term neurological conditions’ (as defined in the NSF). As it developed it became a broader assessment of need in neurology more generally. • Neurological conditions account for 20% of acute hospital admissions, 10% of A& E attendances and one third of GP attendances. (Jader) • It is estimated that 65% of people with a neurological condition are of working age with a range of possible prognoses of 14 months to some conditions that impact on their lives for up to 30-50 years. Back to contentsBack to section head

9. complexities in the planning and commissioning of services for people who require care and support Range of agencies /services involved from regional /sub regional tertiary centres to local community services, Scope well beyond health social care including social care and housing and children’s services. The number of conditions, diverse range of needs and complexity of the pathways Lack of access to public health data and information. There are multiple demands on commissioners with wide portfolios of work, to meet the performance standards and quality markers in this complex clinical area. This results a lack of capacity to prioritise issues, duplication of effort across PCTs, inconsistency in collection, interpretation of data and decision making, inappropriate use of commissioners time due to needing to react to multiple national and local lobbying groups or requests for FOI and potential fragmented relationships with commissioners across the neurological pathways (specialised commissioning and PCTs.) Changes in designation of specialised commissioning (national) and potential impact on responsibilities of both specialised commissioners and primary care trusts in redesigning the shift towards care closer to home in the community An apparent Inequality of access and consistency of standards of practice across the region The impact of the personalisation agenda, both in opportunities and risks, including personalised budgets, in areas of unmet or unrecognised need and high levels of need for continuing care The younger age profile and demographic issues, of people with a long term neurological condition and the social context in which expectations and decisions about their level of care and support is increasing. The relative scarcity and location of the skilled workforce, neurologists, allied health professionals, specialised nurses and subsequent demand on their time and function. The strength, contribution, role and local issues of the voluntary /charitable sector in this field. Access to advice and engagement with clinicians especially if tertiary /secondary centres are out of area for PCTs. Medical/clinical model inappropriate to deliver the pathways within the NSF LTnC, especially for those with an enduring or progressive disability requiring social and or community support. Back to contentsBack to section head

10. Chapter VI of ICD10 - Diseases of the nervous system (G00-G99) Back to contentsBack to section head

11. What services provide care for this population? • Wide range of services provide care for people with neurological conditions: • General practice • Outpatient – diagnosis, management plan, rehabilitation • A&E • Inpatient (elective and acute) • Social care (statutory and vol sector) • Other Back to contentsBack to section head

12. People other than neurologists provide most of the care • Large number of neurological disorders are very common and dealt with by specialties other than neurology and neurosurgery • Stroke patients – looked after in general medicine • Elderly looked after by geriatric medicine – even where there are issues such as PD. • The referral threshold (when do we call the neurology team) may differ from place to place – depending on workload, skill mix, historical precedent, capacity etc • Common issues looked after in general practice Back to contentsBack to section head

13. Specific neurological diseases Back to contentsBack to section head

14. Epilepsy - Overview Background notes below in notes page Back to contentsBack to section head

15. Multiple Sclerosis - Overview Background notes below in notes page Back to contentsBack to section head

16. Parkinson's Disease Overview Background notes below in notes page Back to contentsBack to section head

17. 3 Prevalence and Incidence Demographics, demographics and risk factors Current numbers of patients with selected neurological illnesses Projected growth Back to contentsBack to section head

18. a) Populations, demographics and risk factors Deprivation Age Ethnic diversity Back to contentsBack to section head

19. Index of Multiple Deprivation 2007

20. We have a younger population than E&W To contents

21. Prevalence estimates vary depending on whom you ask. Interpret with caution Current numbers of patients with selected neurological illnesses Back to contentsBack to section head

22. Prevalence estimate 1 – DH (Neuro Numbers / NICE) DH estimated the incident and prevalent rate of Neurological Disorders when compiling the NSF. Back to contentsBack to section head

23. Estimate 2. Jader L. 2007. Approx 5.8% of populations of Wales are affected by neurological disorders Back to contentsBack to section head

24. Bradford compared to National Model Data taken from a range of sources – Jader, NSF / Neuro Numbers, NGO websites Bradford and Airedale. 502k p. 2009 JSNA Bradford numbers from System 1 are roughly consistent with modelled estimates for epilepsy and MND. However, System 1 reported Parkinson's Disease and MS are both considerably lower than the modelled estimate. This may be due to problems with the model or the fact that the population age structure (and risk profile) for Bradford is somewhat different to the national picture (see earlier slides).

25. Local Prevalence of some conditions – taken from data in System 1 practices System One is probably our best source of information, given the high number of GP practices now on the system (85%) and the fact that it is typically preferable to use observed rather than modelled data in studies where the local demographics are different to those found nationally (as in Bradford).

26. Significant uncertainties in the data on epidemiology and need. • There is a dearth of up to date comprehensive epidemiological studies in this area. • There is no good surveillance system in this area. • There are a number of pitfalls in the use of mismatched epidemiological measures? Eg • comparing point prevalence, period prevalence, standardised and crude rates and rates standardised to different populations. • Many of the reference populations on which estimates are drawn are old, may have changed significantly from the time of estimation – and may not be reflective of our population. • Measures of prevalence can change markedly over a 10 year period. With many chronic conditions, the new incident rate may be higher than the death rate – therefore prevalence grows steadily even in a population of static size. Population growth and demographic shift may exacerbate this significantly. • The cumulative multiplication of multiple errors may in effect cause an over estimation of need; possibly by a considerable margin. • The extent of accuracy of data depends greatly on case ascertainment; and interrogation of clinical records • The incidence and resulting prevalence of neurological conditions which give rise to the need for rehabilitation has been shown to be highly variable across localities • This variability results from the complex interactions of demographic, lifestyle and socio-economic circumstances • Planning for local services thus requires attention to a variety of key indicators, including baseline epidemiological data, and clinical epidemiological data on the consequences and associated need for rehabilitation arising from these conditions Back to contentsBack to section head

27. Example of dangers of inappropriate use of epidemiological data from elsewhere Bradford rates are age standardised per 100,000 population using European baseline We have considered the figures in Cockerell’s paper on “Neuroepidemiolgy in the UK” that our original estimates came from and traced the original references. Looking at the original papers cited, Cockerell is actually quoting standardised prevalence ratio’s for MS and not a DSR per 100,000 as the table in his paper states. For Parkinson’s disease, the data he quotes are based on an age and sex specific prevalence figure for Glasgow and not a rate per 100,000 as he claims. Back to contentsBack to section head

28. Epilepsy Prevalence Back to contentsBack to section head

29. Epilepsy Prevalence in Bradford and Airedale – from epidemiological studies National estimates of prevalence and incidence Incidence 50/100,000 / year (range 40-70/100,000 (1,2,3,4)) Prevalence usual figure given for prevalence in UK is 500-1000/1000,000 (5). 770 /100,000 used as best estimate by NICE (6) NB 20% misdiagnosis rate Combined factors of remission, surgery and death keep prevalence relatively stable. Back to contentsBack to section head

30. Observed Prevalence – from READ coding in System 1 practices Epilepsy (F25 + Children) system 1. Local estimate Bradford – the numbers of cases identified from local data may overestimate prevalence A data extraction was performed on System 1 practices (Dates) for READ codes for Epilepsy (at any time) 62 practices were using system 1 at the point of data extraction (354,269 people registered). Representing approx 65% of the practice population registered in the district. 5933 cases (all ages) of epilepsy were identified. This represents an approximate all age prevalence rate of 1092 / 100,000, well in excess of the upper limit of the normally quoted prevalence range. It is most likely this is due to over counting of cases, with some cases identified in this data extraction more than once. Aggregated to the city, this would equate to approximately 8855 cases of epilepsy. NB exercise extreme caution in data interpretation from this Back to contentsBack to section head

31. Adult Epilepsy Prevalence (QOF) 2978 cases of ADULT epilepsy receiving drug treatment recorded in Bradford and Airedale (QMAS April 2008) The prevalence of adult epilepsy in Bradford and Airedale is not significantly different from the England Average The bars on the chart indicate the range of recorded prevalence at practice level. The table below gives a summary of number of adult cases at Alliance level. The prevalence of adult epilepsy in Bradford and Airedale, as measured through QOF is not significantly different from the England Average Back to contentsBack to section head

32. Wide range of prevalence of epilepsy at Practice level • There is a wide range of prevalence of epilepsy within practices in the district. • This might be accounted for by some or all of the following factors: • Under-ascertainment, • Age structure • Random chance District Average is 0.76% of population NB Adults only. There is denominator error in this chart, the denominator is 20+yrs old. This error is systemic across all practices. Back to contentsBack to section head

33. System One data On Epilepsy in Bradford A prevalence forecasting model suggests the following: By 2015: 307 extra cases of Epi By 2020: 564 extra cases of Epi By 2030: 1364 extra cases of Epi NB QOF Crude prevalence = 0.7% Due to difficulties in interpretation and coding, it is likely that the QOF prevalence is the more accurate marker.

34. PD Prevalence Back to contentsBack to section head

35. Range of prevalence estimates Local • Locally estimated Directly Standardised prevalence of PD – 76.4 cases / 100,000 population (95% CI 69.6 – 83.7) • Crude prevalence rate of 100.7 / 100,000 National • The estimates prevalence of PD vary widely. • A prevalence estimate can be taken from NICE - 200 / 100,000 population. • The annual incidence of new cases of Parkinson's disease is estimated to be 4–20 per 100,000 people in developed countries with age distributions similar to those in Northern European countries. Most settle on an incidence rate of 17 / 100,000 (NICE) • Caution – significant discrepancies in estimation of prevalence. Treat with caution. Back to contentsBack to section head

36. System One data On PD in Bradford A prevalence forecasting model suggests the following: By 2015: 23 extra cases of PKD By 2020: 51 extra cases of PKD By 2030: 106 extra cases of PKD

37. MS prevalence Back to contentsBack to section head

38. System One data On MS in Bradford A prevalence forecasting model suggests the following: By 2015: 23 extra cases of MS By 2020: 51 extra cases of MS By 2030: 106 extra cases of MS

39. Range of prevalence estimates Local • Locally estimated Directly Standardised prevalence of MS - 108.6 cases / 100,000 population (95% CI 99.8 – 118) • Crude prevalence rate of 113.1 / 100,000 this is a locally derived estimate from analysis of S1 data National • Incidence - NICE estimate is Between three and seven people per 100,000 population are diagnosed with MS each year • 100 to 120 people per 100,000 population have MS. • Recently published Health Technology Assessment made estimates of prevalence of 77 – 121 / 100,000. 77 / 100,000 was in Leeds. Back to contentsBack to section head

40. MND Back to contentsBack to section head

41. Range of prevalence estimates • Locally estimated Directly Standardised prevalence of MND – 8 cases / 100,000 population (95% CI 5.8 – 10.7) • Crude rate of 8.7 / 100,000 this is a locally derived estimate from analysis of S1 data National • Estimate in NSF of 7/100,000 prevalent rate and 2/100,000 new incident rate • Numbers are small so caution – forecasting indicates an increase in prevalence of 3 new cases by 2015, 5 new cases by 2020 and 11 additional cases by 2030 Back to contentsBack to section head

42. ABI / TBI No forecasting of new incident rate (new cases) or prevalent rate (existing and ‘ongoing’ cases) is available. Nor is a forecast into the future There are significant uncertainties with the data. This reflects uncertainties in coding and counting. This is a nationally acknowledged weakness in our surveillance systems. It makes planning more difficult.

43. Migraine No forecasting of new incident rate (new cases) or prevalent rate (existing and ‘ongoing’ cases) is available. Nor is a forecast into the future There are significant uncertainties with the data. This is a nationally acknowledged weakness in our surveillance systems. It makes planning more difficult.

44. c) Projected growth in prevalence Back to contentsBack to section head

45. A prevalence forecasting model suggests the following: By 2015: 307 extra cases of Epi By 2020: 564 extra cases of Epi By 2030: 1364 extra cases of Epi NB Caution re interpretation. Estimate based on S1 By 2015: 23 extra cases of PKD By 2020: 51 extra cases of PKD By 2030: 106 extra cases of PKD By 2015: 23 extra cases of MS By 2020: 51 extra cases of MS By 2030: 106 extra cases of MS • For MND numbers are small so caution – forecasting indicates an increase in prevalence of 3 new cases by 2015, 5 new cases by 2020 and 11 additional cases by 2030 Takes into account estimated prevalent rate and population growth Does not take in to account death rate – thus assumption is made that death rate = incident rate (therefore steady state – and pop growth is main driver of growth). Difficult to get death rate specifically for people with certain neuro illnesses – a combination of cause specific (how many die FROM PD in any given year) and general AACM (how many p die WITH PD in any given year) – technically difficult to do this without v detailed analysis (more detailed than can be done in routine work)

46. 4 Health care utilisation and health outcomes and spending on health care. Health care utilisation for neuro illness generally Epilepsy PD MS Others Programme Spend on Neurological Illness and economics. Back to contentsBack to section head

47. a) Health care utilisation for neurological illness generally Back to contentsBack to section head

48. Most of neurological workload seen within general practice. • Estimated that 9.5% of people consult their GPs annually due to a neurological problem. • Estimated that neurological problems are the third most common reason for visit to GP Of this group 7.5% are referred to OP for further advice. • The majority of patients with neurological illness are principally looked after by GPs. Back to contentsBack to section head

49. A&E use for people with neurological conditions Little if any data! Back to contentsBack to section head

50. V limited data • 10%of visits to A&E (Jader L / neuro numbers)) • whilst we know relatively little – there is reasonable evidence (tacit, rather than citable) that many people with neuro conditions do not see a neurologist in A&E or MAU; • and that prompt neuro asst might reduce need for admission; and significantly improve chance of full long term rehab etc Back to contentsBack to section head