Service Mapping Overview. Thames Valley Strategic Clinical Network

Transcription

1 Service Mapping Overview Thames Valley Strategic Clinical Network FINAL September 2014

2 Contents Executive summary and recommendations... 6 Executive summary... 6 Recommendations... 9 Neurology: an overview Background Overview Key guidance Overview of the data National guidance General overview of Thames Valley area Thames Valley: population overview Population distributions and postcodes per CCG General: Neurology strategies and incentives in the Thames Valley Joint Strategic Needs Assessments and other strategies Reference to neurological conditions and plans in current strategies across the Thames Valley CCGs Commissioning for value packs Other relevant information in the strategies Commissioning for Quality and Innovation General: Local leadership in neurology GPs with a special interest Leads for neurology and/or long-term conditions Regional neurological alliances in the Thames Valley Specialised commissioning Specialist service provision Overview of services in Buckinghamshire Buckinghamshire Neurorehabilitation Unit Overview of services across Berkshire

3 Overview of services across Oxfordshire Oxfordshire Community Neurology Specialist Nurse Service (CNSNS) Physical Disability Physiotherapy Service (PDPS) Adult Speech and Language Therapy service (SLT) Oxford Centre for Enablement Common gaps reported by user and carer groups across Thames Valley Social care GP knowledge Lack of priority for improving neurological services Epilepsy overview Prevalence About epilepsy Overview of epilepsy services Oxfordshire health economy Berkshire health economy Area of good practice Buckinghamshire health economy Parkinson s overview Prevalence About Parkinson s Overview of Parkinson's services Parkinson's services across Oxfordshire health economy Parkinson's nurse-led clinics Parkinson's services in Buckinghamshire health economy Parkinson's services across Berkshire health economy Local recommendations for Parkinson's Multiple sclerosis Prevalence Overview Age of onset Symptoms General overview of MS services across Thames Valley MS services in Buckinghamshire health economy MS services across the Berkshire health economy Voluntary sector provision MS services across Oxfordshire health economy Good practice Local recommendations for multiple sclerosis

4 Acquired brain injury Prevalence About ABI General comments on services for ABI across Thames Valley Traumatic Brian Injury Voluntary sector provision Other Overview of issues and gaps in service provision Recommendations for ABI Motor neurone disease Prevalence About MND General comments on services for MND across Thames Valley MND Care Centre Oxford Specialist nurse provision MDT working Voluntary sector involvement Issues and gaps in services Recommendations for MND Headache and migraine About headache Prevalence and Burden Overview of headache services Local recommendations for headache Provision of community services for rarer neurological conditions Data introduction Background Project mandate Data explanation The comparator group Comparator group and population statistics Data

5 The local data picture for NHS Thames Valley Workforce Information Outpatient data Introduction Outpatient data Outpatient episodes by CCG in Thames Valley Geriatric medicine Referral to treatment data Inpatient data: condition-specific reporting Epilepsy HES data for epilepsy Headache and migraine HES data for headache and migraine MS and demyelinating diseases HES data for multiple sclerosis and demyelinating diseases (MS+) Motor neurone disease HES data for motor neurone disease (MND) Movement disorders including Parkinson s HES data for movement disorders, including Parkinson s Muscle disorders HES data for muscle disorders (MD) Neuropathy HES data for neuropathy Sub arachnoid haemorrhage HES data for sub arachnoid haemorrhage (SAH) Acquired brain injury HES data for acquired brain injury (ABI) Appendices Appendix

6 Appendix Appendix Appendix Appendix Appendix Appendix Appendix Appendix Appendix General: Other decision-making bodies in the Thames Valley Healthwatch locations Health and wellbeing boards Other relevant bodies Other notable health information in the Thames Valley Appendix NCS data extracts methodology and definitions Inpatient data (actuals) Outpatient data Referral to treatment times Appendix Disclaimer

7 Executive summary and recommendations Executive summary The makeup of neurological services across the Thames Valley SCN is complex. Historically having little local leadership for long-term neurological conditions (LTNC) across all health economies, has led to a lack of designated leads, formalised integrated pathways and informed neurology commissioning. Services have evolved over time, driven by clinicians with individual interests in specific conditions, especially specialist nurses who have been in post for a number of years. The result of developing and providing services in this way renders an overall vulnerability and service delivery tends to rest on individuals with no planning for absences and minimal succession planning. As part of the mapping of local neurology services it was agreed between Thames Valley SCN and NCS following an overview of NHS Comparators data to examine data across nine condition areas as part of the exercise. When reviewing quantitative and qualitative data, although there are pockets of notable practice, it was difficult to identify formalised links and flows which knit pathways together across the area for any of the conditions. The nine conditions reviewed are: Epilepsy Headache and migraine Multiple sclerosis and demyelinating disease Motor neurone disease Movement disorders (including Parkinson s and tremor) Muscle disorders (including myasthenia gravis) Neuropathy Sub-arachnoid haemorrhage Acquired brain injury More details on the data findings are available in the data section of the report and there are a range of data spreadsheets that have been made available to the SCN. There is no Joint Strategic Needs Assessment (JSNA) overall for neurology so no definite numbers around local disease prevalence or incidence and prediction for numbers of patients in the future. Utilisation of the national data can be misleading, for example in the case of MS the number of individuals registered with the specialist nurses or the consultants is almost double the expected calculated from national figures. Development of registers would enable social and health care to work more closely together to provide services. In the case of conditions such as Huntington s disease, 6

8 where the cost of social care is high, prior understanding of likely numbers of people who will present with the disease over the next five years and timely notification of disease diagnosis will help the local authorities prepare for provision throughout the disease progression. Community service provision is patchy, again due to unclear referral pathways. Anecdotal information regarding waiting times suggests that for some services waits can be lengthy which could lead to detrimental outcomes for patients. There is a lack of data for community services hence findings are anecdotal. Where data is available, such as Community Neuro-Rehabilitation Services and the Community Head Injury Service within Buckinghamshire Healthcare Trust, this is held at local Trust level. Across the Thames Valley SCN region, there is a lack of understanding around how services are commissioned and by whom. There is some confusion surrounding the reach and extent of specialised commissioning for neurological services but evidence of ongoing work to ensure further clarity going forward. Data is not being routinely used by commissioners to inform service planning and provision across the pathway of care. Admissions and costs for neurological conditions across the acute sector are in the main rising year on year. Weighted data across the CCGs indicates varied and unexplained differences in performance which should be explored. Over the nine conditions reviewed, non-elective/emergency admissions with a primary or secondary diagnosis equated to a spend of over 22 million in 2012/13. Comorbidity data indicates that where neurology diagnosis is the secondary code, the primary codes, and thus the cause for admission, are frequently conditions such as urinary tract infection or lobar pneumonia. Utilisation of preventative strategies, earlier recognition and more effective treatment in the community could lead to a reduction in avoidable admissions and would support local efficiencies or service redesign. Anomalies in the data reviews across the four years and nine conditions also indicate that there is scope to review and improve coding across the local acute service providers. There is anecdotal evidence that due to lack of capacity and under-resourced services, staff are unable to focus on the necessary ongoing improvements for their service area. With no clear picture of either gaps in service provision or the need to include neurology in commissioning intentions, local improved outcomes for patients cannot be addressed. Integration of health and social care services is poorly developed across the region. However, due to long-standing nursing and therapy staff having an understanding of 7

9 the ad hoc nature of the systems, good outcomes are achieved for some for patients although these have not been planned or commissioned in a formal fashion. However, this may not be sustainable in the future. Many specialist nurses are working with caseloads well above good practice guidelines; this needs to be addressed to ensure that governance arrangements and working time directives are not breached. Voluntary sector provision across the region appears to be established and provide good quality services. However, many patients turn to voluntary provision when there is difficulty in accessing NHS services and this may mask the true demand for NHSprovided services. Across Thames Valley there is well-developed patient and carer engagement driven by some excellent voluntary sector and established regional neurological alliances (RNAs). The work done by some of these RNAs, led and driven by committed and highly motivated individuals has led to service improvements. Common gaps reported by user and carer groups across Thames Valley include the specialist knowledge of neurological conditions within social care which are not equitable across the area. There is a perception of a lack of understanding in some GPs knowledge of neurological conditions which is a common concern among patients and carers. This often leads to difficulty getting the appropriate and necessary referral to specialist care from their GP and processes can be difficult, overly bureaucratic and untimely. Many patient groups and alliances report conversations with CCGs where they have been told that it is highly unlikely that neurological conditions will be a priority for the CCG as numbers affected are insignificant when looked at in relation to the local need for older people s services. With the exception of Buckinghamshire this is reflected in the fact that there is no reference to neurological conditions in future CCG commissioning intention documents. 8

10 Recommendations This review has identified some common challenges in the provision of neurology services for the area. Below are recommendations for improvement which seek to tackle some of the underlying causes and which can be used to support the development of a neurology improvement action plan. These recommendations are based on key information arising from the quantitative and qualitative data obtained for this work. Recommendation Commissioners and providers will routinely examine and interpret neurology data to inform practice Based on Action Benefits There is minimal evidence that commissioners are routinely examining and interpreting neurology data to inform practice. The data obtained in this review should be used as a baseline, with continued use of data and other intelligence for the forensic pursuit of quality improvement. Commissioners, along with patients and the public, should have rapid access to accurate, insightful and easy-to-use data about quality at service line level. More rigorous attention should be paid to the regular examination and monitoring of neurology data in relation to commissioning services to benchmark performance and drive continuous improvement. (please note that the Neurology Intelligence Network will be live from mid June 2014 and will further support commissioning and planning decisions. A compendium of Neurology information is also available at Potential efficiencies through an effective understanding of data Potential improved outcomes for service users Recommendation Commissioners agree a minimum data set for the community services to identify information which can support avoidable admissions Based on There is no evidence that community data is being used to capture interventions considered to have resulted in an avoided admission. 9

11 Action Benefits Commissioners at both CCG and Local Authority level should look towards the use of the minimum community data set to support innovation and avoid admissions. Data will support the development of local pathways Reduction in avoidable admissions Recommendation Commissioners identify a neurology service leads at CCG level Based on Action Benefits Although it is recognised that there is a Clinical Reference Group member for neurosciences who represents Thames Valley from the Clinical Senate, there are no neurology service leads within any CCG at present ( although a GP in Berkshire West took was identified in August 2014) Consideration should be given to identifying neurological service leads at CCG level whose main responsibilities would be focused on ensuring adherence to the principles for longterm neurological services contained in NICE guidelines. Improved patient outcomes Recommendation Review provision of local specialist nurses in neurology Based on Action Benefits Specialist nurses across TVSCN, both in the acute and community sector, are the key case managers for patient care; however, it was difficult to rigorously define the number of patients held on caseloads due to variation in how patient caseload was defined. Due to the fluctuating nature of many neurological conditions, caseloads were open and some were very large. There appears little succession planning or robust planning for staff absences Consider reviewing specialist nurse coverage across health economies to allow for effective case management. Look at developing further business plans for specialist nurses identifying the potential cost benefits these roles will bring. Support for more effective case management Potential cost benefits Recommendation Undertake a review of local patients and their carers regarding service provision 10

12 Based on Action Benefits There have been the Quality Neurology audit carried out in West Berkshire and several reviews in Buckinghamshire but there is scope for these to be widened. Commissioners undertake to review local people with a neurological condition. Improved patient satisfaction Access to information to inform service planning and potential integrated care pathways Recommendation Review co-morbidities across neurology to identify areas where interventions could be introduced to reduce avoidable admissions Based on Action Benefits Data shows that there are a number of avoidable admissions due to conditions where prevention schemes could be developed in the community. Review co-morbidity data across the top conditions and identify areas where local community initiatives could be introduced to reduce avoidable admissions. Review referral of neurology patients being admitted to hospital through a referral system (examples where this is happening are NHS Kernow CCG and NHS Vale of York CCG. Look at common reasons for admission and explore current pathways. Risk profile patients especially for epilepsy and Parkinson s, introducing a case management system for those at high risk of admission. Understanding of local pathways and where the key issues are Ability to identify the common markers that result in admission and establish robust models to manage these, i.e. UTIs, falls, confusion. Recommendation Raise awareness of neurological conditions Based on There are no formalised local programmes to raise awareness of neurological conditions for non-specialist professionals. 11

13 Action Benefits Commissioners work (with the Strategic Clinical Network) to prioritise education and support to raise awareness of neurological conditions among non-specialist professionals, particularly primary care clinicians, community nurses and care home staff. Improved understanding of service user needs Best care delivered Recommendation Review notable practice examples on integrated care pathways (ICPs) for those with neurological conditions Based on Action With the exception of Acquired Brain Injury across Oxford CCG and the Joint Brian Injury Service Pathway, service network and cross agency referral protocol in operation across Buckinghamshire there are no local plans for specific neurological ICPs. The SCN and commissioners review current best practice examples to see if these would be appropriate across Thames Valley. Particular attention should be paid to care homes and assessment of what interventions could be established to support frail elderly with neurological conditions being admitted generally this is due to a lack of understanding of how these conditions should be managed. An example of an ICP can be sourced at: Benefits Improvements in pathways locally Potential cost benefits Recommendation Joint commissioning arrangements Clinical Commissioning Groups and NHS England (Specialist Commissioning Wessex) should consider developing collaborative commissioning arrangements for the care of people with chronic neurological conditions, recognising that un-coordinated commissioning will be unlikely to achieve the necessary improvements. Based on Many services that people access are community-based services commissioned via the CCG. These are not commissioned via specialised commissioning but by the CCG. 12

14 Action Benefits Consideration should be taken to ensure that both specialist and community services are commissioned using a wholesystem approach across health economies. Potential efficiencies through joint commissioning Improvements through enhanced joint planning approaches Recommendation Based on Action Benefits Recommendation Based on Action Development of accurate data and local disease registers There are no definite numbers around local prevalence or incidence. Utilisation of the national data can be misleading. For instance, it was reported that the MS nurses in Buckinghamshire have a combined case load of 1,250 MS patients; however, national prevalence figures equate to a significantly lower number of 834. Development of the registers would enable social and health care to work closer together to provide services. Consider developing a local disease register for specific neurological conditions. Understanding of local prevalence to support service planning. Development of Neurology GPs with a Special Interest (GPwSIs) There is great potential in the GPwSI role as part of a network of neurological services. As well as reducing pressure on hospital clinics and improving access for those who cannot drive or travel, this may bring additional improvements in care for long-term neurological conditions. GPwSIs have a good understanding of psychosocial, family and employment issues, have links to social, voluntary and other local services, and are able to create opportunities for joint clinics, education and improved specialist access. Consider developing a neurologist-led training/mentoring programme to encourage uptake of GPwSI in neurology across CCGs. 13

15 Benefits Improved pathways for patients Potential cost benefits Recommendation Review the access to appropriately funded Community Neuro-rehabilitation teams Based on Action Benefits Interviews and data indicate that there should be more emphasis on the need for adequately resourced community neuro-rehab teams across the area Neuro-rehabilitation is explored in more depth Improved patient pathways 14

16 Neurology: an overview Background The aim of this project is to give an overview of the neurological service provision across the Thames Valley Strategic Clinical Network area. The report and appendix also provide an analysis of services both in cost and activity, a gap analysis and actionable recommendations. The work was undertaken between December 2013 and August 2014 and involved: Interviews with key stakeholders (identified by the SCN) across the Thames Valley SCN area which have provided qualitative data Document reviews The development of a range of indicator spreadsheets (quantitative data) A presentation of key findings (January 2014) A draft mapping report (March 2014) A final draft mapping report incorporating comments (May 2014) A stakeholder group meeting to discuss data and report ( June 2014) A final report ( September 2014) As much pertinent available information has been included in this report for each of the above conditions, focussing on both positive practice and challenges with provision across primary, secondary, tertiary and social care. However, this information has been reliant on the stakeholder meetings, local information held by charities supporting those with the conditions and co-operation of the clinicians/professionals invited to take part in this exercise. This report represents a snapshot in time (January to August 2014) and the extent and depth of data provided, then, does vary from condition to condition, depending on the information available at the time of writing. This has resulted in a limited number of condition specific recommendations in some of the conditions. Overview In this report we highlight the variation and lack of standardisation across the Thames Valley. The report emphasises emerging priorities and core neurology indicators that should be considered for neurology service commissioning. 15

17 An average clinical commissioning group (CCG) has a population of 225,000, and will have approximately 42,000 (18.7%) people living with a neurological condition such as multiple sclerosis (MS), Parkinson s, motor neurone disease (MND) or epilepsy and a further 33,500 (15%) living with migraine. There are many problems with neurology services, including long delays in receiving diagnosis, lack of access to information, and fragmented and poorly co-ordinated care. This is why informed and expert commissioning is essential. Other facts include: neurological symptoms account for about one in 10 GP consultations % of the population are diagnosed with a neurological condition every year one in six people has a neurological condition which makes a significant impact on their lives 2% of the UK population are disabled by the neurological condition. Key guidance The National Service Framework for long-term conditions (NSF: 2005), published in March 2005 is the single most comprehensive guidance for neurology services. Although no longer recognised as core policy by the government, it provides a framework for the standards that services should seek to meet, supporting development. It is relevant both for people with neurological conditions and those supporting them. The NSF sets out 11 quality requirements to transform the way health and social care services support people with neurological conditions to live as independently as possible. A midterm review of the NSF for long-term conditions conducted by NCS (NCS: 2010) found that no single primary care trust (PCT) surveyed, was able to meet any one of the 11 of the NSF s quality requirements. The NHS Outcomes Framework (DH: 2013) sets out the key outcomes to be achieved by the NHS in five domains. In 2012, the Neurological Alliance produced a document to examine how the health and social care reforms could be used to improve outcomes for the neurology community. Intelligent Outcomes (NA: 2012), warns that the government has virtually no accountability measures to address the many serious problems with neurological services. The report also provides a useful interpretation of the NHS Outcomes Framework for neurology, looking at neurology-specific outcomes in each domain. 16

18 A recent report for the National Audit Office and the Public Accounts Committee demonstrated that many of the problems faced by patients a decade ago, before the NSF, still persist. Current spending on neurological health and social care services, estimated at 5.3 billion in , does not provide value for money (NAO: 2012). Social care spending on services for people with physical disabilities has remained constant at 2.4 billion in While social services are defined by disability rather than clinical condition, estimates are that around 25% of year olds with a chronic disability and a third of people in residential care have a neurological condition. Overview of the data In addition to the information provided by the National Audit Office (NAO: 2012), analysis of the latest available data (DH: 2012) reveals that on average, a third of PCT expenditure was spent on non-elective and emergency neurological services. 17

19 National guidance A range of national guidance is available about the appropriate support for people living with various specific neurological conditions, and further guidance for some conditions is still in development. Table 1: A summary of neurological NICE clinical guidelines for the conditions included in this report NICE clinical guideline Publication date Publication number Head injury 2003 CG 4 Multiple sclerosis November 2003 CG 8 Parkinson s June 2006 CG 35 Epilepsy (adults and children) January 2012 CG 137 Headaches September 2013 CG 150 Spinal injury assessment May 2015 Under development Motor neurone disease TBC Under development Other guidance for neurology includes: The National Service Framework (NSF) for long-term conditions (NSF: 2005) Year of care and national care pathways for: o MS (MS Trust et al: 2008; Thomas et al: 2002) o Parkinson s (McMahon and Thomas: 1998) o Motor neurone disease (MNDA: 2008) o Progressive supranuclear palsy (Peel et al: 2012) o Costed care pathways for MS, Parkinson s and MND (Thomas et al: 2010). National end-of-life care guidance (GSF: 2011) and specifically for neurology (NHS: 2011) Parkinson s UK s guidance for appropriate medicine access in acute settings (PUK: 2010) 2013/14 NHS Standard Contract; for Neurosciences: Specialised Neurology (Adult) NHS England Brain injury rehabilitation guidelines; o Rehabilitation Following Acquired Brain Injury. Royal College of Physicians 2003 o Guideline 130 Brain Injury in Adults SIGN

20 Other relevant strategies would include: NICE guidelines CG 56: Head Injury Triage, assessment, investigation and early management of head injury in infants, children and adults (2007). NICE Clinical guideline CG 105: Motor Neurone Disease The use of non-invasive ventilation in the management of motor neurone disease (2010). NICE Clinical Guideline CG 53: Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of CFS/ME in adults and children (2007). NICE Technology Appraisal 260: Botulinum toxin type A for the prevention of headaches in adults with chronic migraine (2012). NICE guidance CG 83: Critical illness rehabilitation. (2009). 19

21 General overview of Thames Valley area Thames Valley: population overview Population distributions and postcodes per CCG The table below outlines the overall population breakdown per CCG within the SCN and the data has been generated from Hospital Episode Statistics (HES). The postcodes of the CCG refer to the general postal area of its coverage although does not denote it explicitly. These are also listed below. Populations have been taken from the websites of the CCG in question, or requested from them directly where this information is unpublished. In the event that they did not respond, the population data has been taken from NHS England s record 1 and is marked with an asterisk. These are shown in Table 2. Table 2: The CCGs, their postcodes and population sizes in the Thames Valley area CCG Population CCG postcode NHS Aylesbury Vale CCG 200,597 HP19 8FF NHS Bracknell and Ascot CCG 136,865 SL4 3DP NHS Chiltern CCG 327,820 HP6 5AW NHS Newbury and District CCG 114,847 RG14 2PZ NHS North and West Reading CCG 107,951 RG30 2BA NHS Oxfordshire CCG 693,515 OX4 2LH NHS Slough CCG 146,685 SL4 3DP NHS South Reading CCG 132,560 RG2 7HE NHS Windsor, Ascot and Maidenhead CCG 152,712 SL4 3DP NHS Wokingham CCG 155,927 RG6 5HZ Thames Valley SCN total 2,169,479 1 NHS England (last accessed ) 20

22 In the Thames Valley SCN area, it should be noted that two groups of CCGs are federated, collaborating on shared areas of commissioning. This has implications for their leadership and accountable officers, for their strategies and for the method of contacting them. They are split into West and East Berkshire. West Berkshire: NHS North & West Reading CCG NHS South Reading CCG NHS Newbury & District CCG NHS Wokingham CCG The CCGs work together on four programmes: urgent care, long-term conditions, planned care and joint commissioning. The lead for long-term conditions across these four is Dr Elizabeth Johnston, of South Reading CCG. North and West Reading, and Newbury and District both note other leads for long-term conditions on their websites so these have also been noted. East Berkshire: NHS Windsor Ascot and Maidenhead CCG NHS Slough CCG NHS Bracknell & Ascot CCG Please see the Appendix 10 for a list and postal details of local authorities within the Thames Valley area. 21

23 General: Neurology strategies and incentives in the Thames Valley The CCGs in Thames Valley are structured as follows. Berkshire is split into Federations: East (three CCGs) and West (four CCGs) and Buckinghamshire is made up of two CCGs; there is also Oxfordshire CCG. Joint Strategic Needs Assessments and other strategies Please refer to Table 3, showing which CCGs within the Thames Valley SCN area have any emphasis on neurology such as through strategies, plans or inclusion of neurology in their joint strategic needs assessment. These include the Operating Plans which are due to be signed off in late June (Also see Table 4 compares plans with Commissioning for value packs) The federated CCGs across West and East Berkshire share activity in their plans. This is noted within the table itself where relevant. Table 3: Analysis of CCG Operating Plans and other strategies NHS Aylesbury Vale CCG Page 45 Operational Plan NHS Bracknell and Ascot CCG Operational plan NHS Chiltern CCG Page 30 Operating Plan 2014/16 Reference to neurological conditions and plans in current strategies across the Thames Valley CCGs Both NHS Aylesbury Vale and Chiltern CCGs adhere to Buckingham County Council / Health and Wellbeing Board s JSNA. Long-term neurological conditions has its own section with key contact at the Council being Christopher Reid, Senior Joint Commissioner During 2014/16 will undertake a comprehensive review of how health and social care currently commission and provide services for people with long-term neurological conditions across health and social care. Plans are in place to develop education sessions on neurology for local GPs in January Neurological conditions and physical disabilities What is the current situation and why is it important? The principal goals are to enhance community-based interventions and increase levels of self-management of long-term neurological conditions to improve patient 22

24 NHS Newbury and District CCG NHS North and West Reading CCG Reference to neurological conditions and plans in current strategies across the Thames Valley CCGs outcomes and reduce unnecessary hospital admissions. Considerable progress has already been made towards creating a unified neuro-rehabilitation service; however, some development is still required and patients experience some gaps in services, for example in epilepsy and in supply of equipment to patients. What is the 5-year vision? Full implementation of a re-designed care pathway for long-term neurological conditions, taking into account the need for support for clients returning to work and for carers; expansion the offer of appropriate assistive technology (equipment, telecare/telehealth services); and optimal use of the capabilities and capacity of the local voluntary sector. What do we aim to do in the 2 year period of this plan? We will undertake a comprehensive review of how health and social care currently commission and provide services for people with long-term neurological conditions across health and social care, with a key focus on neurorehabilitation services. The community equipment service is being re-designed and will be re-tendered as a managed service based on the updated service specification. There is also potential to incorporate additional services: Home Improvement Agency, Domestic Lift Maintenance, Telecare Monitoring and Response, provision and maintenance of long-term Wheelchair products, provision of continence products. The CCG adheres to West Berkshire Council s JSNA which does not contain anything neurological despite NCS having written a neurology section for the JSNA in No reference apart from the existence of the SCN in draft operating plan 2014/16 Reading Borough Council covers the JSNA for North and West Reading. Neurological conditions are not mentioned. No reference apart from the existence of the SCN in draft operating plan 2014/16 NHS Oxfordshire One reference on the need to improve RTT times for those CCG with Neurological conditions NHS Slough CCG No reference apart in draft operating plan 2014/16 23

25 NHS South Reading CCG NHS Windsor, Ascot and Maidenhead CCG NHS Wokingham CCG Reference to neurological conditions and plans in current strategies across the Thames Valley CCGs Reading Borough Council cover the JSNA for South Reading. Neurological conditions are not mentioned. No reference apart from the existence of the SCN in draft operating plan 2014/16 No reference apart from the existence of the SCN in draft operating plan 2014/16 No reference apart from the existence of the SCN in draft operating plan 2014/16 Commissioning for value packs The commissioning for value packs developed across England aim to support local discussion about prioritisation and utilisation of resources. The data below indicates where neurology is highlighted across the constituent CCGs in Thames Valley. Where highlighted in the commissioning for value pack there are potential savings that have been identified by NHS England. Table 4: Commissioning for Value packs CCG NHS Aylesbury Vale CCG NHS Bracknell and Ascot CCG NHS Chiltern CCG Spend Elective and daycase admissions No neurology detailed No neurology detailed Drivers of spend & quality Elective and daycase admissions No neurology detailed No neurology detailed Quality Mortality from epilepsy under 75 years No neurology detailed Mortality from epilepsy under 75 years Emergency admission rate for children with epilepsy aged 0 17 years Neurology Specifically in commissioning plans ( details in Table 3) Yes Yes Yes 24

26 NHS Newbury and District CCG Elective and daycase admissions FHS prescribing Elective and daycase admissions No neurology detailed No reference NHS North and West Reading CCG NHS Oxfordshire CCG NHS Slough CCG NHS South Reading CCG NHS Windsor, Ascot and Maidenhead CCG NHS Wokingham CCG Elective and daycase admissions FHS prescribing No neurology detailed Nonelective admissions Elective and daycase admissions Elective and daycase admissions FHS prescribing Elective and daycase admissions FHS prescribing Source: NHS England Elective and daycase admissions FHS prescribing No neurology detailed Nonelective admissions Elective and daycase admissions Elective and daycase admissions Elective and daycase admissions Elective and day-case admissions FHS prescribing No neurology detailed Emergency admission rate for children with epilepsy aged 0 17 years Emergency admission rate for children with epilepsy aged 0 17 years Patients with epilepsy on drug treatment and convulsion free, 18+ yrs Emergency admission rate for children with epilepsy aged 0 17 years No neurology detailed No reference No reference No reference No reference No reference No reference 25

27 Other relevant information in the strategies As seen in Table 3 and 4 the draft plans for the CCGs are mostly not explicit regarding neurology, however, there are areas in the strategies which will have an influence on patients with neurological conditions. Berkshire West Federation Key priorities The CCGs key priorities for the next five years are as follows: Placing a greater emphasis on prevention Putting patients in control of their own care planning Better use of technology Better integration between health and social services Implementation of Hospital at Home Developing the role of primary care services as part of a more integrated system, including linking with the Thames Valley Area Team to optimise core contract delivery, and ensuring that the CCG role in commissioning enhanced services is used to maximum effect. Commissioning hospital services delivered through new models of care fewer centres of excellence, one stop shops, combining hospital and community services Utilising tariff flexibilities and new models of contracting to deliver these priorities Planned Care: Using more community-based health services rather than hospitals wherever possible Harnessing new technology to afford a greater range of means of interaction between patients and their care teams Incentivising providers through contractual and pricing mechanisms to build in greater integration and efficiencies in pathways Eliminating inappropriate hospital admissions Shorter lengths of stay in hospital Ensuring care pathways include and support the patient in planning for their scheduled discharge Efficient and appropriate number of outpatient visits Promoting the integration of health and social care services Supporting more people to care for themselves Improved patient reported outcomes for planned procedures 26

28 West Berkshire is currently developing a 5 year strategy for neurology in collaboration with Thames Valley SCN East Berkshire CCGs Plans to contain expenditure: Develop Primary Care with GP practices open 7 days a week. Integrate community teams supporting people with long-term conditions. More clear division between hospital based A&E and urgent care centres Improve efficiency for booked operations and procedures in hospital. Bring specialist care closer to home Raise awareness with public to encourage shared responsibility Buckinghamshire This is made up of two CCGs (Chiltern and Aylesbury Vale) who work closely together, commissioning through a series of Joint Executive Teams to deliver the clinical outcomes required. Aim to deliver joined up coordinated care across the whole health care system, including: Increased support for self-care and carers: excellent patient and carer information, supported by education sessions and expert patient programmes. Support groups and online networks as well as changes in consulting style and shared decision making, maintained by significant increases in the use of technology by our staff and by patients themselves. Prescription of lifestyle changes as part of treatment and improvement in the knowledge and confidence of front line staff to allow them to raise lifestyle issues with patients (Make Every Contact Count training). Creation of a directory of community resources including signposting to additional support services. Build on Prevention Matters, taking the strategic view that investing in this area now will yield benefit in the years to come. Addressing mental wellbeing needs for patients and their carers including advice on staying healthy and emotionally resilient. A tailored approach for higher risk groups which is not just age related. Services that are commissioned on the basis of understanding the health needs of our local population and ensuring that services are accessible to those populations and individuals who are at the greatest risk of poor health outcomes. Improve management of long-term conditions including care planning, patient defined outcomes, detection of co-morbidities especially mental health problems, proactive case management using our established multiagency groups (MAG) programme, rapid one stop shops to sort out 27

29 problems (delivered by an integrated team such as MuDAS), tailored approach for people with multiple morbidities, reduced outpatient follow ups, maximised preoperative preparation to reduce post-operative recovery time. Effective crisis management by a team of health and social care staff, who work together to help the patient stay at home while the crisis is managed. An emergency and acute service that is responsive but aims to allow the patient to stay in their home where possible. This will include support in decision making from community staff from all disciplines both to avoid hospital admissions and speed up hospital discharges seven days a week. High quality inpatient services that are only used for those patients who really need it and where the interventions are proven to be effective. Smooth, effective discharge that minimises delays and ensures wherever possible patients return home for the assessment of any ongoing care needs they may have. Improving the quality of life of those that have been in hospital, or who are in need of increasing care at home, via services that maximise their independence. Tailored and empowering support to care homes, from the whole primary care/community team. End-of-life care for those that most need it, provided in the most appropriate setting for both patients and carers. Oxfordshire CCG Reduce years of life lost from conditions amenable to healthcare by 3.2% in 5 years. Reduce the amount of time spent avoidably in hospital by 31% in 5 years. Increase the proportion of older people living independently at home after discharge from hospital by 8% in 2 years. In the top 20% nationally for people satisfied with their experience of hospital care in 5 years. Increase the number of people with mental and physical health problems having a positive experience of care by 5.2% in 5 years. There is also a section on principles underpinning delivery: Clinicians and patients working together to redesign how we deliver care. Promoting integrated care through joint working. More care delivered locally. 28

30 Commissioning for Quality and Innovation The key aim of the Commissioning for Quality and Innovation (CQuIN) framework for 2013/14 is to secure improvements in quality of services and better outcomes for patients, whilst also maintaining strong financial management. There are no CQuINs in Thames Valley that are specific to people with neurological conditions although there are a few specific to long-term conditions, specifically around care planning and holistic management. There are others that are relevant due to patient experience, or common comorbidities such as pressure ulcers. The NHS Institute for Innovation and Improvement lists the following areas as having CQuINs in place for which have relevance for people living with a neurological condition. Royal Berkshire Foundation Trust Pressure ulcers: reduction in all preventable pressure ulcers Falls: implementation of the falls care bundle Oxford University Hospitals Pressure ulcers: percentage of patients that have a Grade 3 or Grade 4 pressure ulcer that has been acquired in hospital that has a root cause analysis undertaken. Berkshire West Community Services Patient experience: improve responsiveness to personal needs of patients - composite indicator on responsiveness to personal needs from the Adult Inpatient Survey. Pressure ulcers: reduction in all preventable pressure ulcers. Falls: implementation of care bundle to reduce falls. Buckinghamshire Vertically Integrated Acute and Community Services Enhanced recovery: to improve the quality of the patient experience and outcomes, and reduce the length of elective care pathways. Oxford Health NHS FT (community) Patient experience: o Combined average satisfaction score across 12 months of 92. o Action plans drawn up and submitted to commissioners following the results of a patient experience survey. o Progress against all action plans to be monitored to ensure that changes are made to make services more patient-focused. Pressure ulcers: 29

31 o Adaptation and implementation of Walsall assessment to include NICE and European Pressure Ulcer Advisory Panel (EPUAP) guidance. o Implementation of preventative measures within two days and/or delivery of equipment within recommended timeframe. o Establish baseline/implement monthly reporting mechanism. o Increase delivery and uptake of pressure damage prevention training by 50%. o Quarterly documentation audit of 30 sets of notes to monitor compliance within NICE guidance. Reducing patients length of stay: percentage of patients meeting the access criteria that are discharged from community hospitals within 28 days of admission. General: Local leadership in neurology GPs with a special interest Apart from West Berkshire, where a GP has recently been appointed, and Oxford CCG which is piloting a GP with special interest for headaches and a headache nurse to work across the pathway (primary to tertiary care) there was little evidence from the clinical commissioning groups, the area team or the academic health science network of any GPs with a special interest in the area. It has been acknowledged that there is a general gap in knowledge held about such roles. Although not specifically for neurology, the clinical leads for long-term conditions listed in the following section would have an understanding of neurological conditions. Leads for neurology and/or long-term conditions It is rare to have a neurology lead within commissioning. Commissioning of neurological services tends to fall within the long-term conditions role s remit. In the Thames Valley SCN area two groups of CCGs are federated, collaborating on shared areas of commissioning: West Berkshire and East Berkshire (as has been noted earlier in the report). The CCGs work together on four programmes: urgent care, long-term conditions, planned care and joint commissioning. The lead for long-term conditions across these four is a GP at South Reading CCG. North and West Reading CCG, and Newbury and District CCG both note other leads for long-term conditions on their websites so these have also been noted. Appendix 10 lists the relevant leads for each CCG within the Thames Valley. 30

32 Regional neurological alliances in the Thames Valley Regional neurological alliances (RNAs), affiliated to national membership organisation the Neurological Alliance ( provide one mechanism for feeding in the views of users and carers by representing people living with a neurological condition in their area. Table 5 provides details of RNAs in the Thames Valley. Table 5: Regional Neurological Alliances in the Thames Valley area RNA Buckinghamshire Alliance of Neurological Organisations Oxfordshire Neurological Alliance West Berkshire Neurological Alliance Source last accessed Area covered Buckinghamshire Oxfordshire West Berkshire Details of chair (where available) Tel: Tel: banobucks@aol.com Jamie Miller John Holt 2 Clayhill Crescent, Newbury, Berks RG14 2NP Tel: JohnMHoltBSc@aol.com Specialised commissioning Arrangements in place within the NHS Commissioning Board mean that the Wessex Area Team are commissioning specialist health services on behalf of the Thames Valley area. There seems to be some confusion among both clinicians and commissioners about the arrangements for the responsibility of commissioning neurological services; however, the localised specialised commissioning team are striving to address issues and peoples understanding locally. The service specification for Neurosciences: Specialised Neurology (Adult) states that a specialised neurology service will provide people who have a complex single need or multiple conditions with responsive specialist services using multidisciplinary teams and disease-specific protocols and pathways, such as those specified in the relevant National Service Frameworks and Quality and Outcomes Framework. 31

33 Local specialised commissioners indicate that the following services come within their remit at the present time and that work is ongoing to work with the Clinical Reference Group (CRG) for neurosciences: Epilepsy Specialised services for complex or intractable epilepsy (ICD G40) will include: multi-professional care including involvement of epilepsy nurse specialists, clinical psychologists, dieticians and learning disability services, pre-surgical assessment services, clinics providing care for those with seizures resistant to treatment and arrangements for transitional care between paediatric and adult clinicians. Parkinson s Specialised services will include those clinics providing multiprofessional care might include involvement of: Parkinson s disease nurses, allied health professionals, dieticians and speech and language therapists, psychologists. Pre-surgical assessment services, neurogenetics and botulinum toxin clinics and those providing transitional care between paediatric and adult clinicians MS Services should be provided across all ages supporting multidisciplinary care for people with multiple sclerosis, neuromyelitis optica and other rare inflammatory disorders of the central nervous system (CNS) as set out in National Institute for Health and Clinical Excellence (NICE) guidelines and including International Classification of Diseases (ICD) codes G35 G37. (Inpatient and outpatient clinics) Acquired brain injury This relates to another specification Specialised rehabilitation for patient with highly complex needs but this is only the very top intensive tier of rehab and locally only Oxford, Portsmouth and Poole provide this level of care and are listed on the UKROC database. Motor neurone disease The description of a specialised motor neurone disease service is where care for a patient with motor neurone disease involves a multidisciplinary approach from MND specialists, including a specialist neurologist, to direct care and provide diagnostic certainty, a specialist nurse / care co-ordinator and specialist provision. All services for people with motor neurone disease should be commissioned as a specialised service this relates to inpatient and outpatient care at listed neurosciences centres not community provision or general DGHs. 32

34 Headache and migraine Surgical interventions for headache patients e.g. occipital nerve stimulators or deep brain stimulation. Specialist service provision OUH NHS Trust hosts the neuro-surgery tertiary care unit for deep brain stimulation (DBS) and has a linked team of surgical movement disorder nurses at Oxford Functional Neurosurgery. This service provides surgical alleviation of movement disorders such as Parkinson's, dystonia, tremor and neuropathic pain syndromes which include phantom limb pain, anaesthesia dolorosa and post-stroke pain. Vagal nerve stimulation (VNS): OUH NHS Trust provides VNS through the neurosurgery team. VNS is a surgical procedure to reduce seizures in epilepsy patients. Specialist equipment: access to specialist equipment can be challenging because of the cost of more complex, bespoke pieces of equipment needed by those with neurological conditions. The Oxford Care Centre supports the specific equipment needs of people with MND across Thames Valley. 33

35 Overview of services in Buckinghamshire Across Buckinghamshire there are two CCGs, NHS Aylesbury Vale CCG and NHS Chiltern CCG. Acute and community services are provided by Buckinghamshire Healthcare NHS Trust. There are pockets of excellence across Buckinghamshire. The Community Neuro- Rehab Service in Bucks is a well-established county-wide interdisciplinary team with a high level of expertise across a wide range of neurological conditions. All of the senior practitioners have more than 10 years neuro-rehab experience and have recognised expertise in the field. Service users are invited to complete a satisfaction questionnaire following each episode of care and in the year ending March % of patients were satisfied or very satisfied with the service. (The response rate for patient satisfaction questionnaires is consistently over 50%). Some work is driven by some long standing members of staff. Most notably specialist nurses who, due to the length of their tenure, have evolved practice and services to provide excellent care to patients living with long-term neurological conditions like Parkinson's and MS, but there is no NHS nursing support for people living with epilepsy. There are some very good examples of voluntary sector provision across Buckinghamshire. Most notably, the Chilterns MS Centre. The Chilterns MS Centre was established and registered as a charity in The Centre offers a range of therapies and services to over 300 patients a week in order to provide comprehensive and holistic care for people with MS. Parkinson's UK provides newly diagnosed classes to people living with the condition, as well as information and support workers, who provide support and signposting. However, these services could be masking the need for publically provided care and support. The Community Head Injury Service (CHIS) provides specialist assessment, rehabilitation and family services for adults (aged 16+) with traumatic and other forms of generalised brain injury (e.g. cerebral hypoxia, encephalitis) across Buckinghamshire. The service is open to other forms of acquired brain injury (eg stroke, subarachnoid haemorrhage), if a person s needs would be best met by the service, more details are in the Acquired Brain Injury section of the report. CHIS is one of the leading community brain injury services in the UK with welldeveloped core rehabilitation, specialist vocational programme (Working Out) and specialist family services. CHIS clinical neuropsychologists and occupational therapists have pioneered national examples of good practice in community, vocational and family services. 34

36 The Community Neuro-Rehab Service, Buckinghamshire Healthcare NHS Trust The Community Neuro-Rehab Service provides specialist assessment, consultation and rehabilitation for adults with a wide range of neurological conditions such as Stroke, Multiple Sclerosis, Parkinson s, and those with rarer neurological conditions. The aim of the service is to assist people in retaining their independence in maintaining their personal, family, work, leisure and social activities, while managing their condition. The interdisciplinary team is made up of clinical psychology, occupational therapy, physiotherapy, speech and language therapy, and has direct access to Consultants in Neuro-Rehabilitation Medicine and specialist nurses for MS and MND, and Parkinson s. The team is supported by a therapy assistant and administrative support, and works closely with other health and social care professionals, and voluntary organisations, such as Parkinson s UK and the MS Society. The service provides specialist person-centred, goal directed rehabilitation programmes facilitated by a key worker. The interdisciplinary nature of the team ensures that the service can be delivered in a flexible manner according to individual need, either individually or in a group, within the clinical setting or in the individual s own home, or work place. According to need, rehabilitation may be offered by a single discipline or by two or more members of the interdisciplinary team. Family members are included in the rehabilitation process, as appropriate. The service regularly runs groups, for example, fatigue management. Consistently, service users report a high degree of satisfactions with the service. There is single point of access for referrals at Rayners Hedge in Aylesbury. The service has a north team based at Rayners Hedge and a south team based currently at Amersham Hospital. 35

37 Buckinghamshire Neurorehabilitation Unit The Buckinghamshire Neurorehabilitation Unit (BNRU) provides a specialist inpatient service for people with an acquired brain injury or progressive neurological condition. This includes people who have had a stroke or head injury and those who have long-term conditions such as multiple sclerosis. The BNRU has 17 beds, including 4 beds for out-of-county referrals (e.g., for patients from East Berkshire) and is based at Amersham Hospital. The service is provided by an inter-disciplinary team including clinical neuropsychology, occupational therapy, physiotherapy, speech and language therapy, rehabilitation medicine, nursing and rehabilitation assistants. BNRU provides person-centred, goal directed, intensive inpatient neurorehabilitation, facilitated by a key worker. Following admission, patients are fully assessed to ensure a comprehensive and realistic rehabilitation plan can be developed to help them achieve their goals. BNRU has close links with community services including the Community Neurological Rehabilitation Team and Community Head Injury Service ensuring consistency and continuity in ongoing rehabilitation as patients are discharged into the community. 36

38 Overview of services across Berkshire Services are provided across Berkshire from two main acute sites: Royal Berkshire Hospital in the West and Heatherwood and Wrexham Park in the East. NCS was commissioned by both NHS Berkshire West and the three local authorities in 2011 to carry out a benchmarking audit 2 using the Quality Neurology tool. There is adequate coverage of specialist nurses; however, many of these nurses are nearing capacity and are unable to further develop their services to provide additional services. There is a Specialist physiotherapy GP Direct Access contract which includes outpatient neuro physiotherapy service which is accessible for all patients in West Berkshire and includes Hydrotherapy. Many of the service improvements across West Berkshire have been driven by the committed focus on neurological conditions by West Berkshire Neurological Alliance, including the initial funding of the rare conditions nurse 3. There is a new MDT movement disorders clinic for the Older Person set up by a local geriatrician in 2013, which has been pump primed by the PD Society and will continue to be funded by a patient legacy. A JSNA for long-term neurological conditions was developed in 2010/11, but has not be implemented. This document was intended to give an overview of the needs of the local population with long-term neurological conditions and make recommendations for future work of the Long Term Neurological Conditions Local Implementation Group for Berkshire West (covering Reading, West Berkshire and Wokingham). It covers 15 long-term neurological conditions. It does not cover the management of chronic pain, nor patients who have had a stroke. The needs assessment is split into two parts: 1) Part A: Including the executive summary, service mapping, generic neurological admissions activity data, national policy, gaps, recommendations and references. 2) Part B: Fifteen neurological disease-specific chapters covering epidemiology, symptoms, diagnosis, treatment, relevant NICE Guidance, end-of-life data and admissions activity within Berkshire West. In Berkshire West neuro-rehabilitation is provided in the community at West Berkshire Community Hospital by the neuro-rehabilitation team. The team is made up of occupational therapists, physiotherapists, speech and language therapists, 2 NCS- An audit of neurological services across Berkshire West (2011) 3 Evaluation of The West Berkshire Clinical Nurse Specialist For Rare Neurological Conditions (2007) 37

39 neuro-psychologists, therapy assistants and specialist nurses for stroke and Parkinson s disease. They support people and their carers to manage conditions such as head injury, stroke and MS. They are able to provide up to 12 weeks of specialist neuro-rehabilitation designed to improve or maintain patients ability to perform activities required for daily living. Care can be provided in either the patient s own home or in a community setting and are able to provide goal-setting strategies improving patient outcomes with mobility, movement, communication, everyday care activities, anxiety, swallowing and cognitive difficulties. There is a 16 bedded Neuro Rehab Unit which is based at the Royal Berkshire Hospitals FT. The Wheelchair Service for West Berkshire which is also based at the Trust and provides wheelchairs for this patient group. Overview of services across Oxfordshire The majority of services provided to people living with a neurological condition across Oxfordshire are centred on services provided at a tertiary level at John Radcliffe by OUH. People will be referred to a neurologist or care of the elderly physician in the case of Parkinson s. People with head injury will be seen by the neurosurgical and/or major trauma teams at the John Radcliffe. Many of the neurologists (see workforce section) listed as having contracts with OUH are either academic or research clinicians. It appears from anecdotal information received that approximately four six neurologists only have exclusive contracts with OUH. Details of all clinics held at OUH are detailed in Appendix 13. Oxfordshire Community Neurology Specialist Nurse Service 4 (CNSNS) CNSNS provides a specialist nursing service to people living with a long-term neurological condition. Within the team each nurse has a lead role for a specific neurological condition which includes multiple sclerosis, Parkinson s disease, epilepsy and rarer conditions (Huntington s, multi-system atrophy, progressive supranuclear palsy, dystonia, motor neurone disease and other neurological conditions not supported by any other nursing service). However, services appear dominated by Parkinson s with over 63% of patients seen by the service in CNSNS Information for Professionals (2014) 5 CNSNS 2 Year update version3 (2013) 38

40 having this diagnosis. The team links 6 with many services across the area to ensure good integrated provision for patients who are in contact with the service. Physical Disability Physiotherapy Service (PDPS) PDPS is a small specialist service providing physiotherapy for people with a longterm neurological disability provided by Oxfordshire Health NHS Trust. Criteria for accessing the service are adults over 18 years of age, registered with an Oxfordshire Primary Care Trust GP, with a long-term neurological condition, e.g. multiple sclerosis (MS), head injury, cerebral palsy, Parkinson s, stroke, or people newly diagnosed with a rapidly progressive neurological condition, e.g. MND. It is a local community based service in several locations across Oxfordshire. There is an emphasis on enabling patients and their carers to manage their disability in their own environment. There is open access to the service and referrals are accepted from the patient, professionals or carers direct to the physiotherapist. This is an excellent service; however, more capacity is needed as the current waiting time is approximately ten weeks. Newly diagnosed programmes are run by this team for Parkinson's patients. Adult Speech and Language Therapy service (SLT) Provided by Oxfordshire Health NHS Trust, SLT provides assessment, diagnosis, treatment and management of adults with communication and/or swallowing impairments in order to maximise their abilities. This service provides an excellent service to Parkinson's patients. Speech and language therapists work directly with the client and provide support to them and their carers. They also work closely with a range of other health and social care professionals and voluntary agencies. The community SLT service is provided for clients in community hospitals, outpatient clinics or their own home. Community occupational therapy services are reported as having lengthy waiting times. CNSNS have recently been able to access an online list of some basic equipment, which has speeded up the process; however, it has been reported than lengthy waits are common for more specialist equipment Oxford Centre for Enablement This provides a specialist neurological rehabilitation service commissioned via NHS England providing specialised commissioned services for patients with more complex needs beyond the scope of local rehabilitation services. Services can be provided to patients with any neurological disorder or neuromuscular condition of relatively recent onset or who have longer standing problems, either static, progressive or fluctuating arising from a neurological or neuromuscular condition. 6 Service at a Glance Oxfordshire Community Neurology Specialist Nurse Service (CNSNS) 39

41 Day hospital provision is offered to patients in six weekly blocks. Patients return three to four times a year, with some returning on an even more regular basis. It has not been possible to gather any evidence of numbers of patients accessing the service. An inpatient rehabilitation service with 33 beds is also provided for patients receiving multidisciplinary rehabilitation. Approximately 50% of these beds are utilised by stroke patients; however, this is based on anecdotal evidence. Many patients are transferred from other hospitals for specialist assessment and treatment. The majority of patients go home after rehabilitation, but some need longterm residential or nursing home care. There is a paucity of long-term beds for complex neurological patients. 40

42 Common gaps reported by user and carer groups across Thames Valley Social care Although there are pockets of good practice, social care does not appear to have the specialist knowledge or understanding of neurological conditions to appropriately assess the needs of those affected across the whole of the SCN area. Systems used to assess need do not take into account the varied issues associated with the condition or the complexity of co-morbidity issues and therefore cannot accurately or appropriately care plan for these long-term conditions. GP knowledge GP knowledge of neurological conditions is very limited and there are no formally identified condition-specific lead GPs. Getting the appropriate and necessary referral through a GP can be difficult, overly bureaucratic and untimely. Lack of priority for improving neurological services Many groups report conversations with CCGs where they have been told that it is highly unlikely that neurological conditions will be a priority for the CCG as numbers affected are insignificant when examined in relation to the local need for older people s services. In Oxfordshire within the local pooled budget, ABI and other neurological conditions have been added on to the Physical Disability Strategy (which in itself is not a priority), whereas on the Strategic Clinical Networks, neurology sits with mental health and dementia. In Berkshire, despite a need assessment of LTNC carried out in 2011/2012 7, neurological priorities have yet to be commissioned. 7 JSNA - LTNC's HRay June Main NA 41

43 Epilepsy overview Prevalence One person in every 100 has epilepsy. That's more than half a million people in the UK, or 20,848 people in the Thames Valley SCN region using national prevalence data. About epilepsy Epilepsy is a neurological disorder with an incidence in the UK of 51 per 100,000 per annum and prevalence of 970 per 100,000 per annum (JEC: 2011).The incidence is high in children and rises again in people aged above 65 years. The estimated medical costs of misdiagnosis, almost 30% of which come from diagnosis by a non-neurologist (DH: 2000), ranges from 29 million to 38 million in England (JEC: 2011; Juarez-Garcia et al: 2006). Economic burdens have been previously identified as inpatient admissions (45%), inappropriate prescribing of antiepileptic drugs (AEDs) (26%), outpatient attendances (16%) and GP care (8%). Accurate diagnosis is therefore key (JEC: 2011; Juarez- Garcia et al: 2006). A study of epilepsy mortality and risk factors (Ridsdale et al: 2011) showed that epilepsy is the fifth highest amenable cause of years of life lost before 75 for males and eighth highest for females. Between 1993 and 2005 mortality for all causes in the general population of England and Wales declined by 16%. In contrast mortality with epilepsy recorded as an underlying cause increased by 31% in males and 39% in females during this period. People at particular risk from death from epilepsy include those: with alcohol problems who do not collect repeat prescriptions for AEDs who have recent injuries receiving treatment for depression Patients who are seizure free for more than 12 months have a much lower risk of seizures generally. Epilepsy was the seventh most common reason for re-admission in 2006/7 in a Department of Health review (DH: 2008). 42

44 Overview of epilepsy services Across Thames Valley the total hospital admissions and costs for epilepsy have increased over the past four years. In 2012/13 total costs for those with a primary diagnosis of epilepsy across the SCN area were 2,125,495 and for those with a secondary diagnosis were 9,786,718. The total cost burden to the Thames Valley SCN area was just under 12 million. (See data section of report and Appendix1-9) Patient groups report a general lack of specialist care for people living with epilepsy. Other than two specialist epilepsy neurologists at OUH and one at Royal Berkshire Hospital there appear to be no other epileptologists across Thames Valley health economy. Patients in many DGH see consultants in specialist neurology clinics. There are two specialist nurses working exclusively with epilepsy patients: one based at John Radcliffe and another recently appointed in Berkshire West. The nursing service at Royal Berkshire appears to be the one service which is leading to an integrated service for people living with epilepsy; however, staff interviewed reported that this is currently under-utilised due to lack of GP awareness of the service. There are no voluntary sector provided information points at any of the hospitals providing epilepsy or neurology clinics despite Epilepsy Society working hard to set them up. Additionally, Epilepsy Society could provide trained volunteers whose role it is to support and signpost patients; however, currently no specialist clinics across the Thames Valley have taken up this offer. There is a highly specialist epilepsy service provided in Chalfont at the Epilepsy Society by the National Hospital for Neurology and Neurosurgery (NHNN). The purpose built Gowers Assessment Unit in Chalfont St Peter is a 26-bed facility and ` offers video-eeg telemetry, MRI, drug level monitoring, neurology, neuropsychiatry and psychology, and admits 750 patients per year from all over the UK and Ireland for in-depth multidisciplinary assessment and treatment. Services are commissioned on a Specialised and CCG level in England. There is anecdotal reporting from the Epilepsy Society is that this service is also under-utilised by local GPs as a point of referral. Data suggests that there is a relatively high level of patients coded with a learning disability [F819] being admitted with a primary diagnosis of epilepsy. Although this study has not looked in depth at learning disability services, it would be relevant for the local health economy to review this. The National Audit of Seizure Management in Hospital (NASH 2) audit results 8 show that there has been little change in the overall picture for most items including: 8 National Audit of Seizure Management in Hospitals University of Liverpool (January 2014) 43

45 Unacceptable variability in care although good care is possible Large proportion of patients with active epilepsy are not under follow-up in an epilepsy service Assessments during acute admissions are often inadequate; and Patients are not gaining access to services after Emergency Department attendance Service developments that could be considered with the increased capacity by the team include nurse-led first seizure clinics, and improved education with A&E teams which would help to improve the NASH audit results. GPs locally have indicated that further advice and guidance on the management of epilepsy would be welcomed. Oxfordshire health economy Tertiary epilepsy services in Oxfordshire are provided by OUH at the John Radcliffe. There is additionally a community neurology nurse who provides 0.2 WTE specialist epilepsy nursing support in the community. Services are focused on the acute, and are currently provided by two consultants and a locum. An acute-based epilepsy advanced nurse practitioner provides support to patients via telephone clinic, education to clinicians, ward staff, community nursing team and additionally provides some nurse-led clinics. The advanced nurse practitioner also takes referrals from GPs. Consultant and nurse-led clinics at John Radcliffe take place on (approximate estimates of clinic numbers in brackets): Monday - Epilepsy Surgery (12) / General Neurology and Epilepsy (12)/ Epilepsy Nurse Clinic (5) Tuesday - Complex Epilepsy(10) / SpR Epilepsy Clinic (6) Wednesday - Epilepsy clinics x2 (9 each) Thursday - Complex Epilepsy (14) / First Seizure Clinic (SpR) (6) / Epilepsy Nurse Clinic (5) and adding alt weeks extra First Seizure Clinic Friday - First Seizure Clinic (7) and once, building to twice, per month MDT Clinics (4) There appear to be capacity issues in particular for the nursing service as GPs often refer to tertiary services at John Radcliffe rather than DGHs, due to referral criteria being set very low in NICE guidelines, and a lack of awareness and understanding in primary care. This lack of capacity could be seen as a barrier to potential service improvements that could be made to patient care. 44

46 A business case to provide two additional specialist nurses and the necessary administration support has been submitted to OUH. NASH high level results for the Oxford University Hospitals NHS Trust (January ) are detailed in the Exhibits 1 and 2 below (under your site ): Exhibit 1: NASH data for John Radcliff FT NHS Trust John Radcliffe Hospital s performance, when looking at the mean of the 7 variables, is just under the national mean. Areas where the Trust could improve performance are Temperature taken in the Emergency Department, Plantars examined 10 and having some neurology input during their attendance. 9 National Audit of Seizure Management in Hospitals University of Liverpool (January 2014) 10 The Babinski sign can indicate upper motor neuron lesion constituting damage to the corticospinal tract 45