Neurology A new approach for London Delivering integrated care

Neurology A new approach for London Delivering integrated care For those with a long term neurological condition December 2016

Acknowledgements The London Neuroscience Clinical Network is grateful to all who have contributed to this publication, with special thanks to its authors: Jacqui Wakefield, Consultant Therapist Neurorehabilitation, King s College Hospital NHS Foundation Trust Catherine Atkinson, Acting Neurosciences Clinical Lead-Rehabilitation, Royal Free Neurological Rehabilitation Centre Michael Oates, Quality Improvement Manager, London Neuroscience Clinical Network 2

Foreword More than four million people in England are living with a neurological condition. In 2012/13 the NHS invested 3.3 billion in neurological services, yet substantial inconsistencies remain in the services patients receive. Reports indicate 64 percent of neurological admissions to a hospital are on an emergency basis -- with more than half of the neurological programme budget spent on unplanned admissions. London has the highest rate of referrals to adult neurology outpatients in the country, yet despite this, the rates of unplanned admissions remain high. The London Neurology Clinical Network s Quality and Safety Organisational Audit 1 found no hospital where patients with a primary neurological diagnosis were systematically admitted under a neurological specialist from emergency departments. Additionally, integrated care systems for patients with neurologic conditions are poorly developed. The London Neuroscience Clinical Network proposes a new commissioning approach to address these issues and raise the quality and efficiency of services for people with neurologic conditions. This paper describes one of three interlocking models examining new approaches to: The management of common conditions in the community by a provider network, using a tiered approach. Improved acute neurology services at a secondary care level led by neurologists. The adoption of patients with neurologic conditions into integrated care systems by providing the tools necessary to make this successful. Most importantly, we wish to raise the profile of this very important group of patients with commissioners, challenging the status quo of services that are outdated for current needs. Nick Losseff London Clinical Director London Neuroscience Clinical Network 1. London Neuroscience Clinical Network, London organisational audit of secondary and tertiary neurological care providers (2014) Link: http://www.londonscn.nhs.uk/publication/london-neuro-quality-and-safety-organisational-audit/ 3

Introduction Purpose This document sets out the key principles of integrated care in the context of neurology need and is designed to enable you to benchmark your current integrated care system using a self-assessment tool that could also be used with a peer review approach. Background The London Neuroscience Clinical Network delivered a briefing to Sustainability and Transformation Plan (STP) leads in October 2016 setting out significant opportunities for clinical commissioning groups (CCGs) to radically improve the efficiency and quality of care for people with neurologic conditions through STPs. The Five Year Forward View 1 set out a future vision for the NHS based around new models of care. The vision calls for a radical rethink on traditional ways of providing care, focussing on locally provided integrated care, organised around the patient. This is particularly relevant for people with long term conditions, including those with neurological disorders. Why neurological disorders? As there is no cure for many neurological conditions, and many patients experience unpredictable deteriorations and progressive disability, the aim is to support people to manage the symptoms and live as normal life as possible, utilising a range of medical and social care professionals. Support needs to be timely and to do it well requires coordination across traditional boundaries. What is integrated care? Integrated care allows patients and their carers to navigate the NHS and social care systems in order to meet their needs, by ensuring that services are well coordinated. It delivers cost efficiency for the system and improves clinical outcomes. Lack of coordination and integration will contribute towards delays and dissatisfaction in the provision of care as well as increased morbidity and mortality. Care is often hospital centric for neurologic patients, but acute providers have no mechanisms to predict and manage unpredictable deterioration in the community. Explicit coordination and integration improves movement through care pathways by reducing duplication, avoiding suboptimal pathways, and minimising risk. It can also enhance prevention activity and rehabilitation, while reducing emergency admissions to hospital or unsafe discharge, and improves the provision of information for selfmanagement. Integration can mean many things from the coordination of services: health and social care, mental and physical health; co-locating teams, improving pathways between acute and primary care, and integrating budgets. As a result most health and social services have approached integration in a different way. In essence it requires services to place the individual as the organising principle for services 2 and for services to form the pathways that enable the individual to navigate a multi agency system, in a timely manner accessing the right care by the person at the right time, in the right place. The principles of integrated care have not routinely been applied to those living with long-term neurological conditions. The London Neuroscience Clinical Network proposes that by applying these principles, services can redress the currently unbalanced system. In a 2012 survey of patients, the Neuro Alliance found that neurology patients wanted: Local services Quick and accurate diagnosis Rapid access to expert support and treatment Self-management support Reduced admissions and length of stay 1. NHS England, Five Year Forward View (2014) Link 2. The King s Fund, Options for integrated commissioning (2015) 4

Model of care (Above): Model of care showing the patient at the centre with a range of clinical and social interventions (levels). Neurology patients will require the different levels during the different stages of their condition, at different times. Use of the levels will not be linear. 5

Principles of integrated care Many services have been developed under the integrated care banner with different structures, people and responsibilities. It is not the Network s intention to provide a one-size-fits-all model, but rather to provide guidance on whether what you have meets the needs of neurological patients. We have identified six principles to aid improvement opportunities: 1. Case ascertainment 2. Risk stratification 3. Care planning 4. Models to bring neurology expertise out to community multidisciplinary teams (MDTs) for at risk patients 5. Self management support 6. Technology 1 2 Principle Meaning Solutions Case ascertainment Risk stratification 3 Care planning 4 5 Access to specialist expertise Self management support 6 Technology Knowing patients, who and where they are, regardless of point in pathway Identify the risk/change or deterioration for a neurological condition population: What do they need, when, how and by whom? There is a defined plan in place, shared amongst relevant professionals. The patient has been involved in the plan and knows who to call/ where to go and has access to it. Rapid access to specialist neurologist / neurology team in community settings Tools/information for the patient which help to break down barriers and support patients to manage their own condition/pathway Patient held records Virtual clinics Online self management support Electronic patient records A managed register of patients, accessible to all care providers (either through a single point of contact or through an online register) Central point of access, risk management, care pathways looking at diagnosis to end of life Care navigator / case coordinator / specialist nurse Shared electronic patient record; patient held record MDT Health and social care joint reviews Specialist nurses, disease specific, or ideally, advanced neurology nurses for a broader range of neuro disorders, linking in with acute neurologists Virtual clinics / telephone / email / video / fast track appointments Bridges approach; North West London UTI pathway; peer support groups NHNN MS triage, self care hub, Patients Know Best It is recognised that the solutions will vary for each provider and therefore the examples are not prescriptive. 6

Self assessment The self assessment tool provides examples of where the above principles have been applied in current services. There will be others which can be added to the tool. The tool is used to benchmark your existing service against the principles, to determine whether you believe the principle has been met or not and the opportunity to describe how you meet it. The peer review system in operation in cancer services and major trauma services has been successful in driving forward service improvement across the country. The Network recommends that the tool is used with a peer review approach so as to encourage increased use of the integration self assessment tool and to stimulate discussion. Stakeholder groups working as a network should visit the local team and discuss the results of the self assessment which will support the local team to develop its improvement case for change for internal discussions. The peer review approach provides both clinical and social challenge and shared learning. The tool is not designed for patient decision making or commissioner performance management. Completion of the evidence section can be shared with colleagues for service improvement. If users would like to share how they have met the principles with a statement on value added please contact the authors. Name of service: CCG: Completed by: Role: Contact details: Principle 1: CASE ASCERTAINMENT The service has a good understanding and knowledge of the local neurology population; knowing patients, who and where they are, regardless of point in pathway Detail Managed register of patients (paper/ web based) Register shared across care provision Single point of contact Specialist nurse (case finding) Other Yes / No Evidence 7

Self assessment Principle 2: RISK STRATIFICATION Identify the risk/change or deterioration for population. What do they need, when, how and by whom? Detail Triage tool to identify patient need Documented pathway available to referrers Patient information directing them to resources (eg NHS111) Clear response timeframes in response to need Frequent unscheduled care attenders identified and targeted Care pathways linked to provide responsive care and prevent unscheduled care Regular A&E attendees known and targeted Other Yes / No Evidence Principle 3: CARE PLANNING There is a defined plan in place, shared amongst relevant professionals. The patient has been involved in the plan and knows who to call/ where to go, and has access to it. Detail Patient focused plan: goals, medical and social Anticipatory care plans: what to do when a change happens Care plans held by local services (Health / social care / NHS111 / GP Supporting the patient to prepare for care planning with clinician /nurse Shared electronic patient notes Patient held notes Neuro navigator Case manager Care navigator Joint reviews (patient co-author, health and social care) Multidisciplinary meetings (GP, consultant, CNS, mental health, social care, third sector) Third sector involvement Yes / No Evidence 8

Self assessment Principle 4: TIMELY ACCESS TO SPECIALIST EXPERTISE Rapid access to specialist neurologist/neurology team in community settings Detail Access to: Specialist nurse (disease specific, PD/ epilepsy / MS / MND) Advanced neurology nurse Community neurology nurse Access to neuro coordinator Access to consultant neurologist: MDT Neurologist sessions in community Direct referral access to neurologist in hospital clinic Neurological opinion telephone, email, video Access to social worker with special interest in neurology Access to: Neurology specific community therapy team General community therapy team with access to specialist neurology input via CNS/ Access to therapies, rehabilitation and condition management: OT, physio, SALT, general and specialist; dietitian Wheelchair Vocational rehab Neuro psychology Specialist equipment and adaptations Social care End of life/ hospice care Third sector support Psychiatry liaison Access to services: Medication reviews Investigations Respiratory Continence Tissue viability A team approach not working in isolation (eg specialist nurses working alongside MDT/ acute) Yes / No Evidence 9

Self assessment (cont d) Principle 4: TIMELY ACCESS TO SPECIALIST EXPERTISE Rapid access to specialist neurologist/neurology team in community settings Detail Clear pathways to access specialist knowledge Clear communication channels and tools e.g. paid neuro opinion by email (e.g. Kinesis), telephone with a response time. Quality of response: Hospital / outpatient full plan for patient and GP not just a ve test result Guidance with constructive feedback on referral Guidelines: Referral guidelines, or referral management process Urgent, not urgent, follow-up time lines Yes / No Evidence Principle 5: SELF-MANAGEMENT SUPPORT Tools/information which the patient has, to break down barriers and be supported to manage their own condition/pathway; patient held records Use of Bridges Detail Availability / register of peer support groups Patients Know Best Use of patient hled care plans Use of technology support tools Condition specific information Social care information Yes / No Evidence Principle 6: TECHNOLOGY Virtual clinics, online self-management support, electronic patient records; anything IT related which helps to manage condition Virtual clinics Detail Shared access to electronic patient records Yes / No Evidence 10

Principles in action Examples as found in current services Principle 1: CASE ASCERTAINMENT The service has a good understanding and knowledge of the local neurology population; knowing patients, who and where they are, regardless of point in pathway Example Overview Contact Added value Neurological Navigator for rapidly progressing, rare and complex conditions Managed register of patients A single practitioner hosted by Herts Neuro community service, covering a county wide remit: Act as an expert resource for both patients and professionals, facilitating access to timely support and care from all the various services and agencies available to them. Provide a highly specialist initial assessment of people with multidisciplinary and unidisciplinary complex needs, and advise on the nomination of the key worker in liaison with other relevant teams. Provide a link in the care of this patient group between acute, community and tertiary services, ensuring seamless care Barnet Community Neurological Conditions Management Team holds a managed register for all progressive neurological disease offering at least an annual MDT review. This is documented and shared with social care and other healthcare professionals. Sharon Freeman Hertfordshire community services Sharon.Freeman@hct. nhs.uk Tel: 01438 841841 Royal Free Neurological Rehabilitation Centre Rakhee.prema@nhs. net Nadia.jeffries@nhs.net A specialist hub around the navigator role to reduce silo working and encourage smoother transition for patients between various agencies. Recent patient evaluation indicated that 6% of respondents said it stopped them going to A&E and 27.5% said it stopped them going to the GP. 11

Principles in action Examples as found in current services Principle 2: RISK STRATIFICATION Identify the risk/change or deterioration for population. What do they need, when, how and by whom? Example Overview Contact Added value Identification and responsiveness to need Responsiveness to need Integrated health and social care teams Barnet CNCMT developed 6 care pathways to identify the type, intensity and length of intervention NETT Neuro-rehabilitation Enhanced transition Team Guys and St Thomas NHS Foundation Trust -In-reach to local hospitals and specialist neurorehab units across London to identify people with complex needs who can be discharged home sooner. -Work with community teams to avoid hospital admissions single point of contact for all care needs respond rapidly to patients with an urgent health problem to prevent their condition worsening and them needing to be admitted to hospital increasing awareness of and improving access to health, social care and wellbeing support multidisciplinary approach covering both physical and mental health and wellbeing providing care close to home Royal Free Neurological Rehabilitation Centre Rakhee.prema@nhs. net Nadia.jeffries@nhs. net Heather.campbell@ gstt.nhs.uk Tower Hamlets Together Vanguard Able to map need for neuro team intervention for the borough and tailor response times to need. Effective navigation can save 7 days from hospital stay and 7 days from the specialist rehabilitation stay; and reduction in POS and Social care costs for some patients. Reducing the frequency and length of possible stay of hospital admissions, improved care for people in the last years of their life. 12

Principles in action Principle 3: CARE PLANNING There is a defined plan in place, shared amongst relevant professionals. The patient has been involved in the plan and knows who to call/ where to go, and has access to it. Example Overview Contact Added value The Neuro Case Management Service (CMS) Rapid response team for multiple sclerosis (MS) A unique community-based service, in which the team in-reaches across the health and social care networks and assists with transitioning clients from paediatric services, voluntary and charity organisations, mental health teams, adult learning disability teams, clients homes, community settings and care homes. A rapid access team to help avoid A&E admission after a relapse. Nottingham City Care Community Neurology Team are a community-based health and social care team who work with any adult (except stroke) with confirmed neurological conditions and a rehabilitation need. Sheffield Health and Social Care Foundation Trust Nottingham City Care Community Neurology Team Service CMS maximise timely and proportionate intervention and minimise the impact of complex conditions on health and social care service A service review highlighted a number of avoidable admissions, for patients attending A&E with relapse, which could have been managed at home with additional support from MS nurses. The pathway now allows immediate issues to be addressed, then patients are discharged back to community with proactive nurse follow-up to prevent further unnecessary admission. 13

Principles in action (cont d) Principle 3: CARE PLANNING There is a defined plan in place, shared amongst relevant professionals. The patient has been involved in the plan and knows who to call/ where to go, and has access to it. Example Overview Contact Added value Coordinate My Care, shared care plan Specialist multidisciplinary meetings Coordinate My Care (CMC) is a web-based IT platform enabling digital, multidisciplinary urgent care planning for end of life care. Frequently, a lack of continuity and coordination can lead to fragmented delivery of urgent care. The care plan contains information about the patient and their diagnosis, key contact details of their regular carers and clinicians, and their wishes and preferences across a range of possible circumstances. Camden MND MDT A MDT bi-monthly meeting. Attendees are from acute, community and third sector, with representatives typically from acute care CNS, MND Association, community palliative care, community neuro therapists, wheelchair services, continuing care and social care. A client register is held and staff discuss clients as needed, or email through information to be discussed prior to the meeting. 020 7811 8513 coordinatemycare@nhs. net Contact: julia.riley@rmh. nhs.uk Website:www. coordinatemycare.co.uk Camden Neuro and stroke team CNWL Camden Provider Services Vicki.powell@nhs.net Patients using CMC have seen 78% compliance with their stated preferred place of death, equating to 17% dying in hospital compared to 47% nationally and is on average saving the NHS 2,100 per patient equating to an annual saving of over 16.8 million in London where it is currently deployed. The meeting has grown trust and enhanced communication between services. Excellent patient feedback. 14

Principles in action Principle 4: TIMELY ACCESS TO SPECIALIST EXPERTISE Rapid access to specialist neurologist/neurology team in community settings Example Overview Contact Added value Community clinics and advanced neurology nurses Neurologist sessions in community MDT setting Rehabilitation medicine consultant sessions in the community Disease specific CNS/ coordinator Acute and community based clinical nurse specialists Specialist nursing staff Committed to multidisciplinary working, with specialist nurses in epilepsy, Parkinson s disease, multiple sclerosis, headache, deep brain stimulation and myasthenia. We have developed a new type of neurology nurse specialist Advanced Neurology Nurses - based in the community with links in to hospitals and are able to support patients with a much broader range of neurological conditions. Neurologist providing sessions within a community therapy team. Occasional home visits provided by neurologist for complex patients. NETT Neuro-rehabilitation Enhanced transition Team Guys and St Thomas NHS Foundation Trust. 2 sessions/ week with neuro rehabilitation consultant working alongside the community therapy team. MND coordinator Alongside MDT outpatient clinics, extra support is provided by the Clinic Co-ordinator, who attends the clinic to ensure patients see the relevant team members and liaises with local services to ensure patients have the assistance they need. MS nurse in Barnet provides a vital link between Royal free neurology patients and community patients running acute clinics with consultants and community sessions. Walton Centre Julie Riley is the Programme Director for The Neuro Network vanguard. Email julie.riley@ thewaltoncentre. nhs.uk. Royal Free Neurological Rehabilitation Centre Rakhee.prema@ nhs.net Nadia.jeffries@nhs. net Heather.campbell@ gstt.nhs.uk Kings College Hospital Motor Nerve Clinic Co-ordinator: +44 (0)20 7848 5172 Evidence for MS specialist services www.mstrust. org.uk/healthprofessionals/msservices-nhs/gemss 15 Direct access to specialist knowledge and expertise improving patient care. Direct access to specialist knowledge and expertise improving patient care. Coordination for patients from a large geographical area, providing direct links to the community teams. GEMMS MS Trust project. Using conservative assumptions, GEMSS data suggests that each WTE MSSN participating in GEMSS saved 77.4k in ambulatory care costs during the year. MSSNs also reduce hospital admissions and the savings generated are likely to far exceed the costs of employing them. 6% of working age pwms said that their MSSN had helped them remain in paid employment in the past year, resulting in personal and wider societal economic benefit.

Principles in action Principle 5: SELF MANAGEMENT SUPPORT Tools/information which the patient has, to break down barriers and be supported to manage their own condition/pathway; patient held records Example Overview Contact Added value Camden MS/ UTI pilot Bridges self management support approach City and Hackney Parkinson s pathway Hospice support group Supporting the patient to prepare for care planning with clinician/ nurse Individuals supported to test own urine and send courier to take MSU and deliver appropriate antibiotics to individual at home. The Bridges Self-management social enterprise facilitates teams and services to integrate effective self-management support into care and rehabilitation for individuals with some of the most complex and multiple needs. Integrated care pathway between inpatient clinics and the adult community rehab team including consultants, CNS, community and inpatient team. A range of support groups disease specific exercise and education groups, expert patient groups and user involvement. A collaboration between the hospice and community team developed a bi-annual hospice-based group to support patients and carers living with life limiting, progressive neurological conditions. The group is intended for patients and their carers to attend together, and encourages access to palliative care services, self-management, and education to address physical, spiritual, psychological, social and emotional issues. Confidence College video guides for self-management: MS Parkinson s and epilepsy. Provides information and tools to drive action by the patient Bernie Porter, UCLH bernadette.porter@uclh. nhs.uk Professor Fiona Jones (CEO and Founder) info@ bridgesselfmanagement. org.uk Donna.Underwood@ homerton.nhs.uk West Essex West Essex Neurological Community Team, St Clare Hospice London Neuroscience Clinical Network website www.londonscn.nhs.uk/ networks/mental-healthdementia-neuroscience/ neuroscience/ Bridges has been shown to increase the efficiency of health and social care teams by making self-management support their main focus. Reducing dependency on health and social care services, and creating a service which utilises the skills of people with long term conditions, shares expertise and increases peoples confidence to self-manage. Seamless service between community and inpatients, reducing duplication and improving coordination of care. Evaluation forms from patients and carers showed that 92% of people who attended felt having access to MDT was useful, with 96% going on to access other hospice services. 16

Principles in action Principle 6: TECHNOLOGY Virtual clinics, online self-management support, electronic patient records; anything IT related which helps to manage condition Example Overview Contact Added value NeuroResponse My health self care hub NeuroResponse is a service model that gives people with multiple sclerosis more control over their care. It includes a telephone triage/ advice line staffed by specialist nurses, email advice services for GPs, and a video clinic linking a specialist s neurology team with the patient and local clinical team. Using the telephone triage service, patients and staff can discuss physical, mental and social care needs, agree care plans and share information. An online resource available on any connected platform- helps people to assess their own care needs, improves confidence and ability in self care skills through achieving measureable goals. Professionals and informal carers can access progress metrics to assist with the journey. Bernie Porter, UCLH bernadette.porter@uclh. nhs.uk Kirkless Council and Greater Huddersfield CCG and North Kirklees CCG selfcarehub@lookinglocal. gov.uk 22% health improvement (using the EQ5D5L measure) for those using NeuroResponse with savings of 2,500 per patient per relapse compared to standard NHS care Excellent feedback In 3 valleys PCCG pain management service: 50% fewer unscheduled a&e visits, onward referrals by GP reduced, 35% reduction in medication usage 42% average improvement in health outcomes. 17