Recommendations for improving Neurological Care

Recommendations for improving Neurological Care Further information and guidance in support of: Strategic Commissioning Guidance to support commissioning plans 2016-17 - Neurological Care South East Strategic Clinical Network Authors: Dr Waqar Rashid, Dr Neil Munro, Sally Allen, Julia Hugason-Briem August 2015 Vs 14 1

INDEX Executive Summary page 3 Introduction page 5 Recommendations: 1- page 7 2- page 9 3- page 13 4- page 17 5- page 19 6- page 21 Commissioning tools page 23 - Measures - Levers References page 24 National Standards, Guidelines page 26 and key documents Glossary page 27 2

Executive Summary There have been numerous reports written by bodies including the Royal College of Physicians, Association of British Neurologists, Public Accounts Committee, National Audit Office, Neurological Alliance, which conclude that, in general: - care is fragmented and poorly coordinated across health and social care providers - patients are not involved in annual reviews and are not offered care plans - patients admitted with a neurological condition rarely see a neurologist and there is a significant cost associated with both health and social care - pathways can be complex and span primary care, tertiary services, long term conditions, emergency care, rehabilitation and end of life as well as social care and voluntary sector - Services are not sustainable in their current form and redesign is needed - Services do not offer value for money and are not cost effective However despite these concerns and obvious need for change, no national strategy or guidance has been adopted and no priority has been afforded to neurological care and patients other than via indirect initiates such as the NSF for Long term conditions and NICE guidance. The South East Strategic Clinical Network has been working to develop a strategy for neurological conditions drawing on the opportunities offered by the Five Year Forward View. The strategy requires a fundamental shift in the way neurological care is commissioned and provided. This transformational change would be delivered through alignment of neurology care with stroke and the development of a neurological care network. The shift in neurological care is needed because: - neurological diseases are common, debilitating and costly and - they affect more than 4 million people of which 350,000 need support in daily lives - The cost of neurological disease to the NHS is estimated at 3.3 billion. The strategy is not complete but states the ambition that Within 5 years all patients with a neurological condition will be cared for by specialists within a neurological network In spite of the lack of national attention, the SCN believes that CCGs can make a significant difference to the care those patients with neurological conditions experience by using resources more efficiently. To support quality and cost improvements in neurology the SCN is making six recommendations: SCN Recommendation 1.CCGs should appoint or identify clinical and commissioning leads for neurological conditions 2. Improve acute neurological care and stroke services by developing closer working between the specialities, e.g. neurology wards with named neurologists for each patient adjacent to hyper-acute stroke units and shared clinical rotas. 3

3. Empower and support those with long term conditions and enhance support and management of neurological conditions outside of specialist secondary care, e.g. care planning and care reviews in primary care setting, primary care management of common conditions (such as headache), improved access to specialist nurses, care co-ordination and adoption of House of Care principles 4. Services should be delivered through a network of care model which allows free flow for patients between the care providers they access 5. Adopt standards of care for neuro-rehabilitation that enable early access to care through a network of care model 6. Link care for those with neurological conditions with key priorities which impact on the wider system, e.g. urgent and emergency care, 7 day working, long term conditions management, stroke reviews The main reasons why commissioners, primary care and trusts may be interested in looking more closely at services for patients with neurological conditions are summarised below. Commissioners Reduction in admissions, readmissions and A&E attendances Reduced excess bed days Improved referral to treatment times Supports achievement of NHS outcomes framework measures Wider systemic impact: Positive impact on the number of days red alert Primary Care Faster access to specialist opinion and support Increased opportunity to improve knowledge and care Better quality of care for patients Trusts Reduction in length of stays Achievement of referral to treatment targets Reduced readmissions rates Wider systemic impact: Reduction in delayed discharges Improved bed management Reduction in cancellations Helps to meet cancer targets A thought In your CCG discussions and planning for 2016/7 how are the needs of patients with neurological conditions and their carers being addressed and/or have you considered how improvements in neurological care could help you to achieve your wider aims? For example: empowering patients, improving the care of patients with Long Term Conditions, integrated services, emergency care, proactive care, emphasising out of hospital care, planned care, rehabilitation services, personal budgets, improvements in technology, community involvement, new ways of working, developing a modern workforce, personal budgets, efficiency and cost effectiveness, locally commissioned services, co-commissioning, improving capacity and flow, joint commissioning with social services 4

Introduction Neurological diseases are diseases of brain, spinal cord, nerve and muscle. They affect how we interact with our environment and are diseases of thinking, feeling and action. Neurological diseases have a very broad reach from the extremely common to the very rare and are the most frequent cause of long term disability. Common conditions include essential tremor, Dementia, epilepsy, migraine, Tourette syndrome, chronic fatigue syndromes, Parkinson s disease, multiple sclerosis and stroke. The number of people with neurological conditions far exceeds other long term conditions such as diabetes, Chronic Obstructive Pulmonary D or Coronary Heart Disease. Neurological Diseases and conditions are: Common Debilitating Costly 4.7m people i In England have neurological disorders (excluding migraine, headache, dementia and stroke) 350,000 people iii in the UK need help with daily living 3.3 billion i Spending on neuro services in the NHS - 3.5% of total NHS spend (excluding chronic pain) 3.6%/ 17.4% growth i In Neuro IP admissions / Outpatients (10/11 13/14) 850,000 people iii in the UK are involved in caring for someone with a neurological condition 2 billion spent i by local authorities on social care services on adults with a neuro physical disability 170,000 people ii in SE coast live with a neurological condition (excluding: stroke, headache and dementia) 65% people i have enough support from local services 72 million spent iv in SE coast on top ten highest spend neurological conditions Neurological diseases can be intermittent, progressive long-term conditions or life-threatening acute conditions. The chronological course of conditions varies widely. The average time between diagnosis and death for someone with motor neurone disease is fourteen months while someone with multiple sclerosis is unlikely to have a reduced life expectancy. The standard of neurology care in England has been the subject of a number of critical reports and national guidance including NICE guidelines. The National Audit Office report (2011) on services for patients with neurological conditions concludes: current spending on neurological health is not value for money. The All Party Parliamentary Group on Epilepsy published: The human and economic cost of epilepsy in England - wasted lives wasted money and there are a number of reports from the patients representative charity, the Neurological Alliance, most recently: The invisible patients. Revealing the state of neurology services. References i National Audit Office. Services for people with neurological conditions: progress review, 2015 ii Based on Neuro Numbers 2003 incidence estimates for PD, MS, epilepsy, MND, subarachnoid haemorrhage and encephalitis applied to SEC SCN population iii Department of Health. National Service Framework for Long term Conditions, 2005 iv South East SCN Data Report, 2014 5

Despite this growing body of evidence and guidance highlighting significant variation in service provision together with the potential for improvement both in quality and cost, little progress has been made in addressing these concerns. The SCN believes that more efficient use of existing resources could dramatically improve care and save money. To support quality and cost improvements in neurology services the SCN makes six recommendations: SCN Recommendations 1.CCGs should appoint or identify clinical and commissioning leads for neurological conditions 2. Improve acute neurological care and stroke services by developing closer working between the specialities, e.g. neurology wards with named neurologists for each patient adjacent to hyper-acute stroke units and shared clinical rotas. 3. Empower and support those with long term conditions and enhance support and management of neurological conditions outside of specialist secondary care, e.g. care planning and care reviews in primary care setting, primary care management of common conditions (such as headache), improved access to specialist nurses, care co-ordination and adoption of House of Care principles 4. Services should be delivered through a network of care model which allows free flow for patients between the care providers they access 5. Adopt standards of care for neuro-rehabilitation that enable early access to care through a network of care model 6. Link care for those with neurological conditions with key priorities which impact on the wider system, e.g. urgent and emergency care, 7 day working, long term conditions management, stroke reviews Impact on patient experience Improvements in commissioning neurological services should have an impact on: including having an annual review resulting in a care plan which is meaningful to them, knowing where to find information and having easy access support; how long patients wait for referral to treatment and how easy it is to access the care they need when they need it; how often patients need to attend A&E or be admitted because of the support available from within the network; a reduction in how long patients need to stay in hospital because they are cared for by a workforce with appropriate expertise; a reduction in how often patients need to be readmitted because of supportive and integrated discharge, community services and rehabilitation services; earlier diagnoses and improved medicines optimisation because of education and access to support from the network to primary care; improving patients quality of life, ability to lead independent lives and the ability to be part of and contribute to society for longer. 6

Recommendations Recommendation 1 CCGs should appoint or identify clinical and commissioning leads for neurological conditions Very few CCGs have dedicated clinical or managerial leads for neurological conditions even though they are common and costly. Commissioning responsibilities fall between CCGs and specialist services with Local Authorities responsible for social care needs. Services are complex and fragmented and often not local. Dedicated leads would be able to embrace the entire neurological agenda and establish links with the relevant commissioners and with the many service providers from statutory and the third sector. The lead individual could be the same as for stroke and/or long term conditions and/or acute care as neurology is integral to all of these areas of care but the issues would still need to be explicitly addressed for neurology. 1.1 A forgotten service Having contacted many CCGs across the SE through 2015 it is clear that there are few dedicated clinical or managerial leads for neurological services. Neurology appears to have a low priority among commissioners (apart from stroke). Evidence from the Neurological Alliance demonstrates that nationally only 15% of CCGs have made an assessment of local costs relating to the provision of neurological services and 20% of CCGs have made contact with NHS England regarding commissioning neurology in the previous 12 months v. Yet, as identified in the introduction, neurological conditions affect a large number of people and a significant amount of resources are being used. 1.2 Fragmentation of current services and pathways People with neurological problems need joined up care across primary, community care, acute care, tertiary care, and rehabilitation to minimise symptoms and enable them to live well. This may involve multiple professions across different health, social care and third sector providers. Some services may be provided locally and others may require patients to travel e.g. to London, for some or all of their care. As with commissioning services for other long term conditions, the priority should be a service model in which there is little or no distinction perceived by the person with the LTNC and/or carer between primary and secondary care and health professionals are able to communicate seamlessly and directly and, where appropriate, a rapid assessment can take place in an appropriate setting. The Neurological Alliance found that 58% of those responding to their survey (published 2015) have experienced problems in accessing the services or treatment they need and only 38.7% of CCGs have taken action to promote integration across primary, secondary, tertiary and social care services for people with neurological conditions. 1.3 Fragmentation of commissioning Neurological conditions do not fall neatly into traditional commissioning categories or pathways and as the course of the condition changes with each patient then they may require access to a whole range of services at different times and do not follow a set pathway. As their condition changes, their v Neurological Alliance. The Invisible Patients. Revealing the State of Neurology Services. 2015 7

care needs change and need to be coordinated across the traditional organisational and professional boundaries. Some neurological health services are commissioned by CCGs and others by specialised commissioning with local authorities commissioning social support. Some neurology commissioning may benefit from or require collaboration with other local CCG commissioners e.g. stroke and neurology (see Recommendation 2). This fragmented commissioning landscape causes additional levels of complication in the complex journeys patients follow. Since April 2015 CCGs are responsible for commissioning outpatient GP neurology referrals to DGHs and to neurology and neuroscience centres as well as for specialised wheelchair services vi. However, dedicated neurology in-patient services remain the responsibility of NHS England specialised commissioners. In order to deliver an integrated network model of care, the CCGs and NHSE need to work together to ensure a joint approach to commissioning which will allow care closer to home. vi NHS England. Commissioning Intentions 2015/16 for Prescribed Specialist Services. 8

Recommendation 2 Improve acute neurological care and stroke services by developing closer working between the specialities, e.g. neurology wards with named neurologist for each patient adjacent to hyper-acute stroke units and shared clinical rotas. Patients being admitted for acute care make up a high proportion of admissions which is costly to the NHS and length of stays vary considerably. Acutely ill patients should be admitted under the care of a consultant with the appropriate expertise but few patients with neurological problems are admitted under the care of a neurologist, even in regional neuroscience centres. There are strong arguments from a clinical, quality and efficiency perspective, for placing neurology beds, staffed by neurologists, alongside Hyper Acute Stroke Units. 2.1 High cost of admissions Neurological disorders are the third most common cause of acute admission behind disorders of the heart and lung. vii In 2012/13 in the SE there were 99,600 Finished Admitted Episodes (FAEs) with neurological mention of which 64% (64,000) as emergencies, 38,000 FAEs with primary diagnosis of neurology of which 20% as emergencies. viii For the top ten highest spend conditions in the SE * the total cost of admissions was 77m, of which over 50% were admitted as emergencies and 5.7m was spent on excess bed days ix. * top ten highest spend conditions: epilepsy, neuropathies, Parkinson s Disease, multiple sclerosis, acquired brain injury, hydrocephalus, CNS infections, Migraine, spinal cord injury, moto neurone disease. 2.2 Avoidable admissions/ long length of stay Patients in the South East, who were not sent to London for their care in 11/12, had a median length of stay (LOS) of one day x and a mean LOS of eight days. This means that half of all patients admitted stay in hospital for one day. Coordinated proactive multidisciplinary team care, including access to rapid assessment and rehabilitation is required to support patients in the community so that admissions are avoided, where appropriate. 50% of admissions were inpatients for an average 15 days xi. Anecdotal evidence from Norfolk and Norwich and from Plymouth shows that service redesign can reduce the average LOS to 5-7 days. vii Weatherall MW. Acute neurology in a twenty-first century district general hospital. J R Coll Physicians Edinb viii HSCIC compendium of neurological data 12-13 ix SCN intelligence and data report x Mean and median length of stay for patients with primary and secondary diagnoses of a neurological condition ICD10 codes G00-G99 by PCT (of main provider) for the years 2007-12 http://www.parliament.uk/business/publications/business-papers/commons/deposited-papers/?fd=2012-01-01&td=2015-07-01&house=1&search_term=department+of+health&itemid=119014&page=13#toggle- 1748 xi Mean and median length of stay for patients with primary and secondary diagnoses of a neurological condition ICD10 codes G00-G99 by PCT (of main provider) for the years 2007-12 http://www.parliament.uk/business/publications/business-papers/commons/deposited-papers/?fd=2012-01-01&td=2015-07-01&house=1&search_term=department+of+health&itemid=119014&page=13#toggle- 1748 9

2.3 Acute inpatients treated by neurologists Acutely ill patients should be admitted under the care of a consultant with the appropriate expertise, but few patients with neurological problems are admitted under the care of a neurologist even in regional neuroscience centres. Despite a number of policies in the last 20 years advising the distribution of more neurological resources to district general hospitals (DGHs), most neurologists are based in regional neuroscience centres and DGHs hardly get a look in. Of the 145 UK DGHs surveyed by the Association of British Neurologists, only nine had dedicated neurology beds, 69 relied on a visiting neurology service, and seven had no service at all. (The other 60 have a neurology service but no beds.) A quarter of acute admitting hospitals offered review by a neurologist on one in six days or fewer. Only 11% of patients admitted with a primary diagnosis of epilepsy were managed by a neurologist. xii In the UK there are 746 neurologists and 197 stroke physicians, which together make 943 neurospecialists in the UK. That is one per 67,000 in the UK, while in Europe the figure is one per 15,000 and in the USA, a figure of one per 19,000 has been highlighted as inadequate. Much worse, the limited resources are poorly distributed. In London there is one neurologist per 45,000 but outside London, about one per 100,000. In the SE there is approximately one per 110,000 xiii. In the SE only 3.2% of admissions with a neurology mention and 6.6% of admissions with primary neurology diagnosis were managed by a neurology specialist in 2012/13 xiv. 2.4 Co-locate neurology and stroke in HASUs The SCN recommends following the guidance of the Royal College of Physicians: R3 The DGH should have an acute neurology ward area, led by a consultant neurologist with specialist staff. Consideration should be given to locating this ward next to the acute stroke unit to allow for the sharing of specialist medical staff, nurses and allied health professionals xv. Sir Bruce Keogh in his emergency care review recommends that specialist services should be in larger hospitals. Hyper Acute Stroke Units (HASUs) should be large enough to have sufficient resources and geographically located close to the population to enable achievement of symptom-to-door time standards. Outside major cities, HASUs are likely to serve a population of 500,000 to 700,000. Given this population coverage, there should be a collective of CCGs responsible for commissioning neurology with stroke. This could build on the commissioning levers used in stroke, such as CQUINs and Best Practice Tariffs, to support admission for those with primary neurological diagnosis being under the care of a neuro-specialist (neurologist or stroke physician). There are strong arguments for placing neurology beds, staffed by neurologists, alongside HASUs. 2.4.1 Clinical benefits result from shared expertise Most acute neurology that is not stroke related is announced as a possible vascular event. It follows that DGHs that have a HASU will attract the bulk of acute neurology. But it is not always immediately clear whether the underlying pathology is vascular: there are stroke mimics (things that seem to be strokes that are not) and there are stroke chimeras (symptoms that seem not to be strokes yet turn out to be strokes). Clinical services are optimised when there is a breadth of xii RCP, 2011 xiii Royal College Physicians. Census of consultant physicians and higher specialty trainees in the UK: neurology 2013-14 xiv HSCIC Compendium of Neurological Data 2012/13 xv RCP, 2011 10

clinical expertise associated with clinical depth from specialist expertise to manage stroke. In its 2011 report the RCP highlights the fact that evidence from the British Association of Stroke Physicians suggest that best stroke care is delivered by a collaboration between all the relevant specialists. xvi 2.4.2 Shared rotas make 7 day working possible for stroke and neurology The second argument for localising neurological beds with HASUs is logistical. Even with the RCP recommendation of 1 neurologist per 70,000 a DGH supplying a population of 500,000 will only have 7 neurologists, just enough to run an on-call neurology rota. A fully fledged 7 day working rota would be more difficult. Junior staffing represents a greater challenge as a minimum of 6 STs are required to staff an on-call rota. There is currently a shortage of stroke physicians; approximately 25% of consultant posts are unfilled. If we achieve 1 neurologist per 70,000 population (a fourfold increase in neurologists since 1995) there will be more neurologists than stroke physicians. Neurologists are not currently accredited in general medicine and do not take part in general medical on-call rotas. Many take part in neurology on-call rotas in regional neuroscience centres but some do no on-call at all. This is an untapped resource. Many stroke physicians also are required to take part in a General Medical or Acute Geriatric oncall. With an increasingly demanding acute stroke service with frequent on-calls and consultant delivery of acute care, this is becoming unsustainable. Much of the acute non-stroke neurology passes through their hands when on-call for stroke. The Shape of Training envisages requiring trainee neurologists to have more training in acute medicine so that neurologists can take part in general medical on-call. An alternative strategy would be to make acute medical take less onerous by removing all neurology-with-stroke to be managed by a joint rota with full 7-day working. 2.4.3 Shared junior staff improves training which secures the future of Stroke and Neurology Neurology trainees are trained in stroke and stroke trainees must take training in neurology. Balancing service needs and training needs is easier in combined units. Part of the difficulty in recruitment of consultant posts has been the failure to match training posts with consultant demand. It has been difficult to recruit trainees in strokes in DGHs where they are not able to get the breadth of experience in neurology. Effective clinical units benefit from a culture of teaching and enquiry that follows from being a teaching unit. 2.4.4 Sharing nursing and other human resources is cost effective and improves care. The expertise of human resources required to run a neurology ward and a stroke ward are the same. The specialist training that nurses must undertake is the same. The high standard that stroke nurses have achieved in monitoring and treating blood pressure and glucose levels is transferrable to neurology nurses. The special expertise that neurology nurses have achieved in monitoring managing the unconscious, the cognitively impaired and the disturbed patient are skills that are directly transferrable to stroke nursing. Both wards require the same involvement of physiotherapy, speech therapy, occupational therapy and neuropsychology. While traditionally stroke rehabilitation is often conducted in level 3 stroke rehabilitation facilities, some stroke patients require specialist rehabilitation. xvi RCP, 2011 11

The focus on a single disease in stroke has made outcome audits extremely effective. High standards in avoiding aspiration pneumonia can be directly translated into the care of neurological patients. 2.4.5 Sharing investigations is cost effective General neurology and stroke are both heavily dependent on MRI. Statement 5 of Quality Standards for Unscheduled care: Acute Neurology: Adults admitted to hospital with an acute neurological problem should have access to urgent inpatient imaging (CT and MRI) where indicated. xvii Increasingly MRI is a requirement in acute thrombolysis and more advanced imaging is indicated for interventional stroke treatments. Patients diagnosed with stroke who develop loss of consciousness or seizures need access to EEG. 2.4.6 Neurology with Stroke should be collocated with trauma, PCI and ITU in a Keogh Specialised Emergency Care Centre (SECC) Sir Bruce Keogh has proposed placing HASUs in the new SECCs, each of which would supply a population of around 1m. However in rural areas the populations may be smaller to allow for speedy access for thrombolysis. The benefit of placing a neurology unit in a SECC goes further. Trauma patients with Traumatic brain injury (TBI) may require transfer to a neurological centre. They may require orthopaedic or general surgical intervention. They may require ITU. Patients with TBI may require neurological assessment and might best be managed on a neurological ward. Cardiac centres with PCI, become the centres of choice for the management of hypoxic brain injury and need, with neurophysiological and MRI support, the assessment of a neurologist. Having a neurological unit within a SECC would allow patients to be transferred to it from a neurosurgical centre earlier than would otherwise be possible, freeing up capacity in neurosurgical centres. 2.4.7 Networks for Long term conditions for stroke and neurology can be shared. The Five Year Forward View envisages an emphasis on out-of-hospital care and increasing need to manage systems networks of care. The networks for stroke and neurologic long term conditions can best be coordinated from a joint unit. It is an accident of history that stroke physicians in the UK are separated from neurology. Stroke physicians will become more trained in other aspects of neurology. General neurologists will become more exposed to stroke and the Shape of Training will require neurologists to improve their skills in general medicine. So it seems inevitable that the two specialities will eventually merge under the umbrella of clinical neuroscience. This is effectively no different from what happens in any European country where stroke specialists are recruited from within neurology. There should be a modest increase in the number of neurologists from 1:100,000 to 1.4:100,000 (1 per 70,000) together with an increase in stroke physicians. A typical DGH with a HASU serving a population of 600,000 would employ an additional 2or 3 neurologists and have 12 neuro-specialists or more, enough to run joint on-call rotas and 7 day working. As in regional neuroscience centres, neurologists should share the management of stroke patients. The savings arising from fewer admissions, shorter admissions and better coordination of networks of care for patients with LTCs would far exceed the investment. xvii ABN Acute Neurology services survey 2014. 12

Recommendation 3. Empower and support those with long term conditions and enhance support and management of neurological conditions outside of specialist secondary care, e.g. care planning and care reviews in primary care setting, primary care management of common conditions (such as headache), improved access to specialist nurses, care co-ordination and adoption of House of Care principles. There is evidence that Specialist Neurological Nurses can increase efficiency and cut costs, but in the SEC Specialist neurology nurse provision is patchy with some areas having no nurses in some subspecialties. Where there are specialist nurses, many are working with caseloads well above good practice guidelines and there is an over-reliance on single handed specialists for sub-specialisms in some areas xviii. Patients are navigating complex neurological pathways and a care coordinator would support seamless joined up care which addresses their holistic needs. Adopting the House of Care principles would support patients to feel more empowered in managing their own care. 3.1 Improve access to Specialist Neurological Nurses 3.1.1Current provision is patchy and caseloads are heavy In the SE Specialist neurology nurse provision is patchy with some areas having no nurses in some specialties. Many specialist nurses are working with caseloads well above good practice guidelines and there is an over-reliance on single handed specialists for sub-specialisms in some areas xix. This gives cause for concern about governance and necessarily means that there is more reactive than proactive management of patients. The recommended number of Specialist Neurology nurses are shown in the table below. Per 100,000 PD nurse 0.6 MS nurse 0.6 Epilepsy nurse 1.8 Generic neurology 0.4 Headache 0.6 Inreach/outreach 0.3 Data source: RCP & ABN Report Local Adult Neurology Services for the Next Decade 2011 and NICE Guidelines 51, 52 and 53 4.3 xviii SCN mapping overview, 2014 xix SCN Service mapping overview, 2014 13

3.1.2 Specialist nurses are a good investment Specialist nurses/practitioners can enable patients to gain a better understanding of their condition, manage medication, signpost to therapies, reach their goals of self-management and provide support responding to times of changes and crisis events. There is evidence that specialist neurological nurses can have an impact on admissions avoidance, facilitating discharge, medication reviews, education and wellbeing. Further details can be found in the RCN report Specialist nurses: Changing lives, saving money, 2010. Specialised nursing services align well with the principle of person-centred coordinated care as envisaged in the House of Care model. The use of specialist nurses could free up specialist time in secondary care and reduce referrals. 3.1.3 Support and enhance collaborative working with GPs and community teams Specialist nurses should not be ignored in the discussions surrounding development of generic integrated care services, focusing on avoiding hospital admissions and addressing the rising needs of an ageing population with multiple co-morbidities xx. Specialist Nurses should become part of these integrated care services as they can add value with their specialist knowledge as exemplified by the close collaboration between the MS Specialist Nurse and the proactive Care Team in the Chichester area. Close working with community teams to promote communication and coordination of services could be enhanced via co-location of services. Specialist nurses can also have a role in increasing the knowledge, skills and expertise in neurological conditions and management among healthcare professionals in the community including primary care, nursing homes, hospices and community teams, by taking a lead role in promoting and delivering education in collaboration with partner organisations. A key element to the success of this collaborative working will be the care-plan which could be coordinated by the specialist nurse or key worker within the community team. 3.2 Identify care coordinators The Five Year Forward View notes that long term conditions are now a central task of the NHS; caring for these needs requires a partnership with patients over the longer term rather than providing single, unconnected episodes of care. Attention should be given to the patients and carers holistic needs to provide peer support, improved social contact and increased occupational support. A care coordinator would establish links across the neurology network with the GP practices and statutory and non-statutory services that support patients with neurological conditions. They would support patients in accessing the services, when they need them. The Neurological Alliance survey xxi found that 31.5% respondents saw their GP five or more times before referral to specialist. The All Party Parliamentary Group on Epilepsy reported that there were 400 avoidable deaths per year, 69,000 people living with unnecessary seizures, 74,000 people taking drugs they do not need, 189 million needlessly spent each year xxii. xx SCN Service mapping overview, 2014 xxi Neurological Alliance. The invisible patients: revealing the state of Neurology Services, 2015 xxii The human and economic cost of epilepsy in England (subtitled wasted lives wasted money ) Report from the All Party Parliamentary Group on Epilepsy, 2007 14

3.3 Adopt House of Care principles Patients are at the centre of House of Care which focuses on good communications and conversations between professionals and a patients so that care plans are developed in partnership with patients and can be easily shared with all professionals engaged in their care. 3.3.1 Every person with a LTNC should have a yearly health review with their GP. This would include systematic and planned assessment of current overall care and their ongoing needs and goals, and to plan their forthcoming period of care with the patient and clinician making equal contribution to the conversation. The outcome of this care planning appointment will be reflected in a personalised care plan, owned by the patient. Where possible this should be carried out jointly with the specialist nurse. Currently only 11% patients with a LTNC have a care plan xxiii. A recognised approach, such as the Year of Care, which combines the training in having better conversations and practical support with implementing care planning could be adopted. 3.3.2 Provide access to self-management programmes Self-management programmes have been demonstrated to be effective in helping patients with LTCs such as diabetes to manage their condition in the way they wish to. They can provide patients with information, advice and guidance on living well generally but also offer generic neurological advice as well as condition specific information (e.g. epilepsy/ MS/MND). Selfmanagement can also offer the benefits of peer support. There are no nationally recognised LTNC self-management programmes but Hertfordshire has developed their own and a summary can be found at : http://www.mstrust.org.uk/professionals/information/wayahead/articles/17022013_06.jsp 3.4 Support primary care Primary care remains the gateway to specialist neurological care but GPs often have limited experience of neurological conditions. GPs need to remain involved in the general health of patients under specialist care for their neurological condition. Primary care should therefore be supported by and are integral to the neurological care network including specialist nurses and consultants, social care and third sector. New models of care described in the Five Year Forward View encourage a blurring of the distinction between primary, community and secondary care and this requires professionals to work together and share care. Neurology would be no exception to these models. According to the NAO report (2011) 670 million was spent in primary care on patients with neurological conditions. Neurology symptoms account for about one in 10 general practitioner consultations xxiv, who often have limited experience of neurological conditions xxv. The report goes on to say that there are difficulties in diagnosing neurological conditions and whilst the final diagnosis is usually by a neurologist, GPs have a key role in identifying early symptoms and referring patients to the right consultant. Early symptoms are often similar to those of many other illnesses with diagnosis xxiii National Audit Office. Services for people with neurological conditions: progress review, 2015 xxiv RCP. Local adult neurology services for the next decade: Report of a working party, 2011 xxv National Audit Office: Services for people with Neurological Conditions 2011. 15

relying on patients medical history and multiple examinations. Interviews with GPs highlighted that GP s often have limited experience of neurological conditions xxvi. The Neurological Alliance survey xxvii found that 31.5% respondents saw their GP more than five times before referral to specialist. GPs could be supported better through a neurological care network in a number of ways e.g. Provide easy immediate access to specialist guidance, advice and support Develop joint clinics with specialist neurological nurses for LTCs Develop and support GP Clubs in high prevalence-low risk conditions e.g. headaches. (See Recommendation 6 below) A headache club might include 20% of all GPs who are supported and empowered via the network through electronic communication, club meetings, and club journals throughout the year. GPs who are not members of the club can refer patients to those that are club members, including specialist nurses and GPs. Provide access to education e.g. Lunch and learn programmes, updates at protected learning events, joint clinics with specialist nurses or consultants 3.5 Continued GP involvement in LTC management is important General Practitioners have an important on-going role in the overall management and care of people with neurological LTCs. General preventative measures and good health e.g. management of blood pressure, smoking cessation, alcohol management, access to local services, management of bone health and cardiovascular risk, weight control are done less well in the specialist setting. These aspects can be just as, if not more, important in causing deterioration than the neurological LTC itself and can lead to avoidable admissions if not managed well. 3.6 Proactive management strategies As mention in [xx] above specialist nurses should work closely with community teams, GPs, patients and carers to agree and introduce individual proactive management strategies for patients with neurological conditions. Possible strategies in line with the principles of proactive care could include: Risk stratification and case identification; Early involvement of community teams including specialist nurse, GP, palliative care, falls prevention and multi-disciplinary rehabilitation; Urgent social care involvement and provision; Early intervention and rapid referral if required to the specialist neurologist; Supporting carers at key emergency times when they are under pressure. xxvi National Audit Office: Services for people with Neurological Conditions 2011. xxvii Neurological Alliance. The invisible patients: revealing the state of Neurology Services, 2015 16

Recommendation 4 Services should be delivered through a network of care model which allows free flow for patients between the care providers they access Patients journeys are not linear and they need to have easy access to the support they need without worrying about whom it would be best to contact. The development of a neurological network across all providers would bring benefits over and above the development of traditional pathways. 4.1 Create network of care for people with LTNC Patients with LTNC should be supported by a network of health, social care and third sector professionals who together should ensure that care is integrated around the patient and their needs and wishes. Patients should be able to access the expertise they need by contacting any part of the network, a node. Each individual in the network is supported and empowered by communication with other members of the network to give more effective care than would have been possible in isolation. A network would benefit from being able to share information through IT systems, effective governance (e.g. supervision) and management support across the various providers. Modern electronic communication with IT provides opportunities for care to be given and coordinated across the network and care can be delivered in home, the surgery or in hospital as needed. Network model of care showing key nodes of points of access A skill-set of an individual member of the network can be rapidly transmitted and amplified across the network. This naturally provides the potential solution to giving better care at lower cost. 17

Compared to European countries we have few neurologists but we have a network of GPs, more geriatricians, stroke physicians and specialist nurses. These resources have evolved rather than been developed by design and good design can optimise the network. Network models are more flexible than pathway models. In a pathway model, there are pre-defined pathways for patients with given conditions. In a network model, the patient may take different pathways or have tailored care through the network according to the decisions made at each node based on the needs of the patient at the time. As the patient is involved in decision making at each node, the patient has control over the pathway and network models are more patient-centred and cost-effective. A key tool to enable the Network model will be care plans which are developed with patients and carers but which are accessible to all those professionals engaged in their care. Electronic solutions to sharing care plans and keeping them live are emerging and CCG plans to digitalise or use technology to for care planning should include those with neurological conditions. Standards around good care-planning should be agreed along with training for those who could be in care-coordinator role for neurological patients 4.2 Club Models One of the benefits of a networked model of care is the mutual empowerment that each node in the network. Clinical decisions at each node may be enhanced by mutual electronic contact, thereby avoiding the cost of passing the patient on to another node on the network. However this need not occur in real-time. Communication between specialist nurse, GP and neurologist may occur later and still be effective. The mutual benefits of networking can be generic. This is particularly seen in high prevalence-low risk conditions such as migraine. Migraine carries a prevalence of about 20%, but not all patients with migraine are formally diagnosed, believing they have normal headaches so many days of work are lost through suboptimal treatment. The prevalence of diagnosed migraine is therefore less than 20%. In one study in South London, only 1 in 5 patients presenting to the GP were given a formal diagnosis for their headache. A neurologist may cover a population of 100,000 people, 20,000 of whom have migraine, so if only a tiny proportion of patients are referred, say 1% to 2% per annum that still represents 200 patients per annum, a significant proportion of their workload. The old model of the GPSI (GPs with a specialist interest) who has additional training in one aspect of neurology and becomes a consultant for a day per week does not address this problem. First the per diem cost of a GPSI is no less than a neurologist, sometimes more and their training is necessarily less. Second they cannot be recruited in numbers to facilitate the management of the 98% of patients with migraine that are not referred to neurologists. What is required is a network of neurologists, GPs with a general but particular interest in headache and specialist headache nurses. The headache club might include 20% of all GPs, functioning in the community as GPs. The mutual empowerment may occur by electronic communication and club meetings, club journals throughout the year. GPs who are not members of the club can refer patients to those that are club members, including specialist nurses and GPs. The costs of a headache club network include the cost of the funding of nurses, and the cost of GPs and neurologists being engaged with club activities. 18

5. Adopt standards of care for neuro-rehabilitation that enable early access to care through a network of care model Neurology rehabilitation should not be considered separate to or outside of the neurology network proposed in this document (see recommendation 4). Fragmented commissioning and the current definitions of rehabilitation do not support a flow through the network of care, rather it can have the opposite effect of holding patients in services that are not appropriate to their needs and can be costly for commissioners. The national Rehabilitation Programme is developing a set of guidelines for commissioners, due in spring 2016, which although not neuro specific, will seek to address some of these issues. There is also a review of national service specifications and a move towards collaborative and co-commissioning which will further support the integration of neuro-rehabilitation into a neurology network. John Etherington, the NHSE National Clinical Director for Rehabilitation and Recovery in the Community, is clear that the NHS Outcomes Framework will only be delivered if rehabilitation improves. Further, he states that rehabilitation: - Is integral to recovery from illness or injury - is essential not a nice to have - Is key to reduce readmissions - Enhances the proper caring discharge of patients - Is for everyone - not just those with specialist needs An improvement guide issued by NHSIQ Adult Rehabilitation Services in England: Sharing best practice in acute and community care can be found at lhttp://www.nhsiq.nhs.uk/improvement-programmes/acute-care/recovery,-rehabilitationand-reablement.aspx 19

The South East SCN has developed draft standards for community neuro-rehabilitation which have been shared nationally and although they were generally well supported, they have not been adopted. Particular thanks go to Dr Lloyd Bradley, Consultant in Rehabilitation Medicine at Donald Wilson House St Richard's Hospital Chichester, for his significant role in developing these aspirational standards. Aspirations for Community Neuro- rehabilitation (CNRT) services based on South East Strategic Overview Document and NHS Clinical Soft Intelligence Service Making Rehabilitation Work Better for People. 1) CNRT provision should be based on need rather than on diagnostic category, so that any patient with a neurological impairment from whatever cause should have equal access to the service. This allows for clearer referral pathways and efficient utilization of specialist therapists and equipment in meeting the needs of the greatest number of people. 2) CNRT access should be based upon clinical need rather than time constraints. Many neurological disorders, both acute and progressive have an unpredictable time course and the specific needs and goals of a patient are likely to change with time such that the CNRT should be responsive and able to meet these needs regardless of how or when the original neurological impairment developed. 3) CNRTs should keep standardized records of activity and outcome measures that can be used to commission and plan ongoing service development as well as benchmarking different services across the region. 4) Contact with the CNRT should be with the explicit purpose of achieving specific goals. There is neither the capacity nor the clinical evidence to support open-ended non-goal directed patient contact. If patients have achieved their stated goal or have a reached a point where further progress towards a goal is not possible, then discharge from the CNRT should occur. 5) If patients have reached a plateau or achieved their stated goals and they have been discharged from the CNRT, there should be scope to re-access the service if their condition changes in a way that would support working towards further goals with the CNRT. 6) The CNRT should have an explicit triage/goal-setting mechanism that ensures that patients are being seen appropriately and that if a patient is not appropriate to be seen by the CNRT, the reasons for this are made clear to the patient and the referrer and suggestions for alternative service provision can be made. 7) CNRTs should work within clinical networks to ensure that access to other related services (such as pain management and palliative care) is clearly defined. 8) CNRTs should have direct access to wheelchair and orthotics services within their clinical network. 9) CNRTs should be supported by and have rapid access to appropriate secondary care services (rehabilitation medicine, neurology) for advice and input without having to go by a 3 rd party referral process. 10) Specialist nurses working within the field of neurological disease should be embedded within CNRTs or have regular clinical contact and a regular exchange of information. 11) There should be a social worker or other formal social services input to meet the needs of patients who are involved with the CNRT. 12) Each CNRT should be properly multidisciplinary with appropriate staffing and seniority of physiotherapists, occupational therapists, speech and language therapists and nursing. Neuropsychology should be accessible in an advisory capacity for treatment formulation as well as for direct clinical contact. 20