7) Summary and key issues to address

1. Data, epidemiology, service utilisation and outcome. District priorities for change Service configuration and model of care Commissioning and planning framework 7) Summary and key issues to address Back to contentsBack to section head

2. Covering statement • There is much we don’t know • There is a skew in this work towards what there is ‘data’ that is readily available. This is important, and we need to take care not to only consider ‘what can be measured’ – for example ABI is little mentioned in this work – an acknowledged weakness. • There is much soft intelligence • There is significant change within the planning system and across the NHS currently – this will affect next steps

3. Context 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

4. 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

5. a) Data, epidemiology, service utilisation and outcome Currently available data will only tell us a part of the picture. A more sophisticated understanding of NEED will help ensure resources are targeted most appropriately. There are SIGNIFICANT uncertainties in current need, and how this will change in the future. These will not be resolved without detailed epidemiological study. Back to contentsBack to section head

6. 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).

7. 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).

8. Data on epidemiology and health need should be treated with caution • LARGE discrepancies in estimates. • No up to date epidemiological studies in many areas within neurology. • Estimates are old, and subject to misinterpretation • We should use epidemiological studies where we have them (eg MS) • There is much that cannot easily be measured. • Good data on the incidence, prevalence and care of ABI / TBI is a priority to address • System 1 is about the best mechanism for surveillance we have. Despite it’s imperfections it is thought to give reasonable estimates of prevalence. Back to contentsBack to section head

9. Thinking epidemiologically and demographically – the population of people with neurological conditions WILL grow 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)

10. We know relatively little about neurology care in primary care and social care • There is much routinely available data • There is a need for activity data related to the management of LTNCs in the community including social services and in palliative care to complement the HES data which exists for secondary and tertiary services. • There is a need for data relating the access and uptake of rehabilitation services. • Stakeholders should identify specific questions. Back to contentsBack to section head

11. Using data for targeting resources • QOF data on epilepsy gives a reasonable perspective on adult epilepsy care and identifies where to target. • Does the current service model have the ability to do this. • This is harder to apply in other LT Neuro areas – less readily available data / no good (agreed) quality indicators. Back to contentsBack to section head

12. AED and Cost Effectiveness of newer AEDs • Careful consideration given to the cost effectiveness of newer AED • Spend on AED is increasing linearly. • If QOF outcomes (albeit they are a crude measure) is not increasing linearly, there needs to be a discussion about whether there is a case for releasing some of the incremental investment we make into newer AED into more clinically and cost effective forms of care. • Consider further modelling of the epidemiology and economics. Consideration of patient and population impact of shifting investment from newer AEDs to other treatments. Back to contentsBack to section head

13. Other recommendations for using epidemiology, economics and service utilisation data. • Consideration of modelling the impact of: • Avoidable morbidity and cost with better seizure control - epilepsy • Avoidable cost with better PD control, slow rate of progression. Needs better understanding of distribution of PD by stage of progression • Ditto MS, PD, MDN, ABI, TBI Back to contentsBack to section head

14. More inpatient and outpatient spend.

15. OP Spend over time Hospital OP load clearly does depend on local policy concerning follow up and supervision; also on the availability of GPwSI to take on some of the routine work that would otherwise have been taken on by a neurologist Assume that each patient is seen twice following diagnosis (once to convey the diagnosis, once to answer any specific questions); then followed up once or twice per year Back to contentsBack to section head

16. All Admissions. Primary diagnosis. Admissions for epilepsy appear to be increasing. Admissions for other main disease groups appear to be relatively stable Back to contentsBack to section head

17. Spend by admission type – emergency admissions are increasing markedly • Elective admissions are relatively stable. Emergency admissions appear to be increasing markedly. Whether this is as a result of changes in baseline need, pathways or service configurations or other reasons is unknown. Back to contentsBack to section head

18. Spend on ‘Neurological’ in contextspend per 100,000 population. 61% in sec care. 39% in prim care £31 / capita on chronic pain. V high spender comparatively £32 / capita on ‘neurological’. Low spender comparatively. Approx 60% of spend on this programme is in secondary care Recall that most care provided for people with neurolological illness is in primary care (much of which may be masked in the ‘other’ category (programme 23) Back to contentsBack to section head

19. b) District priorities for change Back to contentsBack to section head

20. The economic climate is all pervasive • There is no new money. There may be less money. • We can be as innovative as we wish. But it needs to be within the current envelope! • Clinicians and expert stakeholders must advise on where the required efficiency can be found • Marginal analysis – dealing with a frozen budget envelope – collective consideration of what stays and what goes is critical. Back to contentsBack to section head

21. Implementing the results of the ‘visioning day’ • The issues that emerged from the visioning day represent a significant wealth of local intelligence. • A number of priorities for local service development were put forward by stakeholders. • These should be discussed, and a plan for how they are progressed agreed through the LTNC Steering Group • The LTNC Steering Group should also systematically consider all of the feedback received and consider how services might be improved. Back to contentsBack to section head

22. 6 district wide priorities emerged • Multi Disciplinary Team working (score 118)– cutting down the barriers between health, social and voluntary sector department to ensure Patients and Carers have the most appropriate care at the right time, the right place and at the right stage of the condition. Working with a navigator to direct patients and carers to the most appropriate service to meet their individual needs. • Consultant Network across the Bradford and Airedale Health Economy, feeding into a Neurological GPSI service that is supported both Inreach and outreach by a community nursing/therapy/social services team. • Rehabilitation (Score 77) – There are 3 Quality Requirements that fall under the umbrella of rehabilitation. More neurological specialist therapist, neuropsychology services and training required, assistive technology (which would fall under the self care strategy) clear pathways and a navigator. Better access to equipment is also stated with a Navigator being fundamental in pin pointing what is and what could be made available. Neuro Rehabilitation Consultant would also be invaluable at BTHT mirroring AGH adding to the Consultant Network. • Education (Score 69) – This is applies to Health professionals from primary care through to Secondary care from patients and carers to voluntary sector and Social care. It based around what is available, what is appropriate for the patients and families, but can only be completed once the MDT is holistic and consistent across the health economy. That should be the “first fix” and education rolled out and based around that team. • Key Worker (Score 57) – This sits in my opinion within the MDT but scored enough points to be placed within the top 5 highest scores. This and the MDT total equate to 175 – this can not be ignored and paramount within the potential re-design of current services and any potential new investment in Neurological services. • Pathways (Score 44) – Pathway redesign to ensure that all stakeholders know what services are where, how to access them and what is available. This would require clinical input and would sit within the re-design team. Back to contentsBack to section head

23. Top 9 Priorities for the district arising from the visioning day. Full set of themes emerging in the notes page Back to contentsBack to section head

24. Care closer to home is seen a priority for change • Supported discharge • Self care • Care that is historically provided in hospital provided through general practice or at home • But: • Achieving a shift from primary to secondary may be a good thing, but it may not be cost neutral. • Shifting from acute to community, from a pure economic perspective, may not be cost neutral. • Resources required to achieve the shift to community-based services are new resources and resources currently used for hospital OP / IP services are old resources. Back to contentsBack to section head

25. c) Service configuration, and model of care Back to contentsBack to section head

26. The strategy and model of care that supports it must cover both ends, and everything in the middle. Back to contentsBack to section head

27. Planning of services and configuration of services should be along care pathways • Use Map of Medicine unless there is a good reason why this is not appropriate; of there isnt an appropriate MoM pathway. • Localising MoM where appropriate • Do the current pathways we have within Neurology track closely to Map of Medicine, or equivalent. How do we measure up Back to contentsBack to section head

28. Links to other pathways might be better • There are key links and relationships that need to be addressed to meet the NSF, both for expediency and also in developing sustainability by embedding systems to include standards of service appropriate for neurological conditions in other mainstream strategies and policies. Any future commissioning arrangements would need to ensure that these are adequately addressed. • These are: • End of Life pathways • Transitions from children’s services • Pain management • Mental health and Learning Disability strategies • Stroke strategy • It is also essential, when creating a specific initiative that it is not exclusive. The mainstream generic activities of care planning , care navigation and self care programmes, led regionally and /or locally, do need to be fully inclusive at an operational level and all LTCs be embedded in generic workstreams to enable a systemic change that is more sustainable for the individuals concerned and to achieve the organisational impact over time. Back to contentsBack to section head

29. Consider whether there a need for a neurology network? • Is there a need for a managed clinical network within neurology across both main provider trusts? • Integrated Neuro service that spans BTHT and AGH • Networks between providers – multi disciplinary etc • Peer support, CPD, governance. • Links to neurosurgery in Leeds • Many be dependant on second neuro at AGH. • May also be dependant on building up capacity for nurse consultants / other nursing support Back to contentsBack to section head

30. Careful consideration needed to the balance between specialised v general nursing support. Nursing and therapy support is needed There seems to be an imbalance between different disease groups There may be some duplication. This reflects the patchy historic pattern of development of these services. Equity of provision across the district is a very important consideration Is there a need for consideration to be given to the balance between specialised (eg disease specific) v generalised (all neurological illnesses) nursing and therapy support services, particularly in the community. Disease specific vs generic nursing and therapy support services There is no ‘best practice template’ to follow. Consideration given to whether there is equitable provision of specialised services across each of the disease areas…..seems like heavier investment into MS than say PD Is there overinvestment in one disease area….at expense of another Is there duplication of services in specialised nursing No specialised nursing for MND / ABI – yet these groups of patients (although small in number) use significantly greater health care. Back to contentsBack to section head

31. Equitability between different areas needs consideration • Nursing and therapy • Medical and non medical • Geography and disease focused. • Generic v specialist • MS services weighted heavily with staff and resources – as a result of historic funding and or pump priming. Consideration of how should this be considered in relation to other services • Consideration of investment into PD service. Nurse prescriber – would it be invest to save – as save o/pt appoints at BTHT/AGH • Generic Neuro Nurse role – consideration of if and how this be funded? • GPSI Neuro service incorporating and supporting a Headache service providing care across the whole of the Bradford and Airedale health economy – provided by through General Practice

32. Therapies • Ongoing work to link therapy and rehabilitation services to Consultant and Specialist Nursing services to provide a holistic range of services • Requires support and advise from the LTnC Steering group to ensure services and pathways are linked

33. Rehab medicine needs a review, Rehab services in Bradford and Airedale • Consistent and prominent theme • Making the business case for improvements to rehab services is critical • This might include: • the equitability of service model across the whole patch. • Out of area placements • Neuro rehab vs general rehab • The links with social care • Inpatient v outpatient rehab • Self care. • Pooling resources currently in use into a single more specialised unit. • Rehab for ABI seen as a particularly important priority Back to contentsBack to section head

34. Are we delivering services within current clinical guidelines? • Little knowledge of whether all services fully implement NICE CG. • Should we conduct an audit of current care model for some of the major neurological illnesses against NICE CG (or equivalent) • This is a significant, and complex piece of work (with opportunity costs) – given the scope and complexity of the different CG for neurological illnesses. • Before we take this further, it should be carefully considered. Back to contentsBack to section head

35. Should we develop a tiered model of service. Common parlance in ‘disease management’ Design services around the tiers. Defining what is in each ‘tier’ is critical, as is defining thresholds for transfer between different tiers Self care in ongoing therapy vs maintenance therapy Self management – signposting people for advice., Back to contentsBack to section head

36. Commissioning and planning framework. Back to contentsBack to section head

37. Commissioning and planning framework will change, but does need to be clarified Commissioner and providers jointly consider the configuration of neurological services within hospital and whether they are appropriately networked Consideration of what is best planned at what level. Not everything can be planned at the level of the GP, GP Commissioning cluster, or PCT There remain significant uncertainties in how the planning framework will evolve. Back to contentsBack to section head

38. Collaboration potential within planning arrangements. Maggie Campbell, NHS Sheffield. Back to contentsBack to section head

39. Payment mechanisms and structures might achieve more for less. Should consider: Telephone care / e consultations (and the payment framework to back this up) Is there a case for piloting the ‘Year of Care’ model in some areas. Would need a detailed costing study. Back to contentsBack to section head