Neurology A new approach for London Neurology quality indicators For adult neurological services December 2016
Acknowledgements The London Neuroscience Clinical Network is grateful to all who have contributed to this publication. Authors Davina Richardson, Clinical Service Lead Therapist Neurosciences, Imperial College Healthcare NHS Trust Michael Oates, Quality Improvement Manager, London Neuroscience Clinical Network Development team Davina Richardson, Clinical Service Lead Therapist Neurosciences, Imperial College Healthcare NHS Trust Michael Oates, NHS England, London Neuroscience Clinical network Dr Jozef Jarosz, Clinical Director / Consultant Neuroradiologist, King s College Hospital NHS Foundation Trust Sam Lane, Programme Manager, National Mental Health, Dementia and Neurology Intelligence Network, Public Health England Alex Massey, Policy, Neurological Alliance Dr Nick Losseff, Consultant Neurologist, UCLH & Clinical Director London Neuroscience Clinical Network Leadership group, London Neuroscience Clinical Network 2
Introduction The London Neuroscience Clinical Network established a working group to review available indicators and their usage and recommend a neurological set in support of neurological service improvement. The following neurological quality indicators cover key areas of the neurological pathway and are divided into the following service areas: Whole systems working indicators Neuroscience specialist centres indicators District general hospitals indicators Rehabilitation services indicators Long term monitoring and Surveillance indicators The indicators are designed to use as a self-assessment. The peer review system in operation in cancer services and major trauma services has been successful in driving forward service improvement across the country. To encourage use of the neurological indicators and stimulate discussion, the working group recommended that the indicators are used with a peer review approach. That is, hospitals / clinical groups working as a network would visit and discuss the self-assessment to support the local team to develop its improvement case for change for internal discussions. The peer review approach provides both clinical challenge and shared learning. The indicators are not designed for patient decision making or commissioner performance management; they are a first iteration and can be expanded to cover additional areas and levels of detail. 3
Neurological quality indicators: In summary Whole systems quality indicators NSCN-WS-1 Number Indicator Data source NSCN-WS-1 GP registers GP practice data NSCN-WS-2 Whole systems approach Self-declaration NSCN-WS-3 Integrated commissioning for services that people with neurological impairment access Commissioners NSCN-WS-4 Involvement of third sector neurological charities Neurological Alliance / other charities NSCN-WS-5 Training and education for management of neurological conditions HENWL, self-declaration Neurosciences regional centre indicators NSCN-RC-1 Number Indicator Data source NSCN-RC-1 Early diagnosis Self-declaration NSCN-RC-2 Access to neurologists Self-declaration, BMC NSCN-RC-3 Access to investigations Self-declaration NSCN-RC-4 Access to specialist mutlidisciplinary team (MDT) allied health professional (AHP) Self-declaration NSCN-RC-5 Communications Self-declaration District general hospital indicators NSCN-DGH-1 Number Indicator Data source NSCN-DGH-1 Effective access to specialist advice Waiting times to transfer of care NSCN-DGH-2 Access to neurologists Number per beds NSCN-DGH-3 Access to online reporting of investigations Radiology and pathology service reports NSCN-DGH-4 Access to AHP assessments Self-declaration NSCN-DGH-5 Communications Self-declaration 4
Neurological quality indicators: In summary Rehabilitation quality indicators NSCN-R-1 Number Indicator Data source NSCN-RC-1 Access to specialist level 1 and 2 neuro rehab beds NHS England NSCN-RC-2 Access to level 3 rehab beds CCG commissioners local report NSCN-RC-3 Access to specialist community based non bedded MDT team assessment and management CCG commissioners NSCN-RC-4 Use of PROMS and outcome measures Self-declaration NSCN-RC-5 Effective referral systems and feedback Self-declaration Long term monitoring / Surveillance indicators NSCN-LTC-1 Number Indicator Data Source NSCN-LTC-1 GP monitoring and review including medicine management GP practices NSCN-LTC-2 Carer support services Local government NSCN-LTC-3 Systems for admission avoidance and prevention of secondary complications Commissioners / Self-declaration NSCN-LTC-4 Access and understanding of advance care planning and end of life care GP registers 5
Whole systems quality indicators descriptors NSCN-WS Number NSCN-WS-1 Registers of patients Data source GP practice GP registers of patients with neurological conditions /access to information on practice level impact of neurological conditions on services Where there are national registers/ guidelines it is expected these are included in the guidelines Could include research registers To have understanding of the impact on resources. Risk stratification GP practice codes for common neurological conditions Research registers Number NSCN-WS-2 Whole systems sommunication Data source Self-declaration Regional service providers and commissioners to have regular meetings to explore and support the needs of the neurological patient within the service deliver plans. Data on neurological conditions to be discussed at partnership meetings. Commissioners, acute, specialist, community care, social care and third sector providers should be encouraged to participate Patient involvement to support co design of services The use of right care data (bench marking data for CCGs available on web site) Minutes of meetings Partnership working for management of long term conditions Joint commissioning Commissioning and provider meetings Evidence of patient involvement and use of patient feedback Number NSCN-WS-3 Commissioning Data source Commissioners Health sectors to integrate commissioning of services to support neurological condition management (for example, NWL sector, SEL sector) This should enable two way feedback and learning between CCGs in a health sector. Informed commissioning across larger populations for efficiencies Business planning for commissioners 6
Whole systems quality indicators descriptors NSCN-WS Number NSCN-WS-4 Involvement of third sector neurological charities and patient feedback Third sector neurological charities and patient feedback used to shape services Number NSCN-WS-5 Perception of how well services are doing More patients being allocated a single point of contact who can be relied upon to provide key information Measurable improvements in the number of patients who feel they have been treated with dignity and respect Patients reporting an improved quality of life Patients, carers and families reporting the provision of good quality, accurate and timely information regarding the condition and the pathway as a whole A perception that services are easily accessible and straightforward to navigate Improved provision of psychological and emotional support More patients feeling they have been effectively and meaningfully included in the rehabilitation programme and goal setting More patients given the opportunity to die in their preferred place of care (linkage to end of life care) Training and education for the management of neurological conditions 7 Data source Neurological Alliance Minutes of meetings Partnership working for management of long term conditions Evidence of patient involvement and use of patient feedback Data source Self-declaration Staff involved in the management of neurological conditions will have access to training and education on the assessment, interventions and management of these conditions This should involve shared learning from specialist centres to the general acute, and primary care settings, voluntary sector and social services. Teaching programs Time tables Job plans Access portals Training needs surveys Evidence of CPD for staff working with neurological conditions
Neuroscience regional centre indicators descriptors NSCN-RC Number NSCN-RC-1 Early diagnosis Data source Self-declaration Timely and accurate diagnosis of a neurological condition Timely access to neurological specialist within A&E settings Timely access to neurological advice within primary care settings Patients informed in a timely manner post investigation of the outcome of the investigation Access to planned investigation units 5/7 Access to specialist neurology beds 8 Waiting times GpwSI in neurology CNS numbers Number of beds Activity of PIU s Number NSCN-RC-2 Access to neurologists Data source Self-declaration Within the system 24 hour access to neurology services Evidence of training positions and recruitment Provision of triage/assessment, advice, support Use of telemedicine Response time for a neurological opinion (A&E - 4 hours; primary care - 24 hrs) Availability of a navigation service Number of neurologists per head of local population Evidence of robust referral pathways to neurology Vacancy rates in neurology Training posts in neurology Number of neurologists Hyper acute neurology beds Number NSCN-RC-3 Access to investigation Data source Pathology, radiology All necessary diagnostics available with evidence of good management and use of scanning resources, pathology and neuro physiology Comprehensive specialist diagnostics with co-existing support from level 3 beds (neuro ITU), neurosurgery, neurophysiology, neuro psychiatry and neuro ophthalmology Level 3 beds (ITU) per 100,000 population Adequate radiology staffing levels to support scanning and reporting. 24/7 access for intubated patients for CT scans 24/7 access for intubated patients for MRI scans 24/7 access for fitting patient for EEG and report within 1 hour Diagnostics available Use of centralised pathology services. Time to deliver results
Neuroscience regional centre indicators descriptors NSCN-RC Number NSCN-RC-4 Access to specialist MDT AHP assessment Data source Therapy staffing levels / teams Within the acute specialist centres physiotherapy, occupational therapy, speech and language therapy and dietetics should be available within a 72 hour period from admission to a specialist centre CNS posts/roles for common neurological condition AHP staff with a specialist in neurology and neurosciences is required Staffing levels, response times to assess, training records Number NSCN-RC-5 Communication Data source Self-declaration Robust record keeping demonstrated within the specialist services with treatment summaries and care plans Where possible use of electronic transfer of information to GP Patient held treatment summary. Use of 111 for sharing (eg neuro response model at NHNN, includes patient care plan on NHS 111) Examples of templates for treatment summaries Examples of treatment summaries Feedback from GPs 9
District general hospital indicators descriptors NSCN-DGH Number NSCN-DGH-1 Effective access to specialist advice Data source Self-declaration Access to inpatient neurology review 5 days a week Evidence of systems being implemented to enable specialist neurological advice to be accessed quickly Number of patients in DGH not transferred to specialist centres Number NSCN-DGH-2 Access to neurologists Data source Self-declaration Time taken for neurological opinion Evidence that a neurologist is contactable for face to face assessment of the patient within working hours Number of requests Response times to requests Number NSCN-DGH-3 Access to online reporting of investigation Data source Pathology, radiology. Access to MRI and neurophysiology 5 days a week Ability to access results from specialist centres quickly Evidence of systems set up to enable care record exchange Number NSCN-DGH-4 Access to MDT AHP assessment Data source therapy staffing levels / teams Within the DGH access to physiotherapy, occupational therapy, speech and language therapy and dietetics should be available within a 72-hour period from admission AHP staff who can have access to a specialist in neurology and neurosciences are required Staffing levels, response times to assess, training records 10
Rehabilitation quality indicators descriptors NSCN-RC Number NSCN-RC-1 Access to specialist level 1 and 2 neuro rehab beds. Data source NHS England / CCG Patients requiring specialist rehabilitation at any point in the pathway should be able to access appropriate level beds Evidence of self-management approaches and support structures within these services Evidence of timely assessment and access to services Access to assessment by rehabilitation specialist Number of beds per population Average waiting times Outcome measures. UK Rehabilitation Outcomes Collaborative (ROC) Access to rehabilitation medicine Number NSCN-RC-2 Access to Level 3 Rehab beds Data source CCG Patients requiring specialist rehabilitation at any point in the pathway should be able to access appropriate level beds Number NSCN-RC-3 Evidence of self-management approaches and support structures within these services Access to assessment by rehabilitation specialist Access to specialist community based non bedded MDT team assessment and management Number of beds per population Average waiting times Outcome measures. UK Roc Data source CCG Community based rehabilitation services should be able to support a self-management approach to neurological conditions in a timely manner Access to supported discharge Evidence of self-management approaches and support structures within these services. For many neurological conditions quality of life can be improved with self-help (programmed support, motivation, ownership) Waiting times to access community based services Presence of supported discharge teams 11
Rehabilitation quality indicators descriptors NSCN-RC Number NSCN-RC-4 Use of PROMS and outcome measures Data source Self-declaration Services should use recognised outcome measures EQ5D score by conditions and by number of conditions in order to see how/whether a person s quality of life is affected by the conditions or number of co-morbidities that the person has Patients with long-term neurological problems report both some of the worst states of pain and some of the highest levels of anxiety or depression. Condition specific information provide medium, languages Data on outcome of service Use of outcome measures including PROMS Patient information examples Number NSCN-RC-5 Effective referral systems and feedback Data source Self-declaration Robust referral systems to the rehabilitation services with quick response times Rehabilitation prescriptions and or treatment summaries for all patients having rehabilitation to be shared with appropriate care providers and GP Navigator roles Single point of access schemes Case management Follow up schemes Number of referrals made Number accepted Number declined UK roc Badgernet other local reporting systems 12
Long term monitoring / surveillance primary care indicators descriptors NSCN-LTC Number NSCN-LTC-1 GP monitoring and review including medicine management Data source GP Regular reviews to support admission avoidance and optimal management Monitoring of progression / improvement Potential use of pharmacists for regular medicine management Telephone follow-up Patient with cognitive impairment unlikely to initiate timely review and self-management 13 GP registers Patient stories Medical records Number NSCN-LTC2 Carer support services Data source Local government / CCG / health Schemes or initiatives to support formal and/or informal carers of people with a neurological condition Number NSCN-LTC-3 To support patients and carers to understand their condition and its consequences. For many neurological conditions quality of life can be improved with self-help (programmed support, motivation, ownership) Systems for admission avoidance and prevention of secondary complications Description of schemes Number of people trained Carer information Data source CCG, GP, local government Access to community based rapid response teams and risk stratification for patient with neurological conditions Surveillance and monitoring systems Number NSCN-LTC-4 Rapid response teams in the community Access to equipment/ online ordering systems (eg TCES / Mediquip) Disability caused by a neurological condition prevent individuals from working Surveillance and monitoring systems should include depression and employment status Access to understanding of advance care planning and end of life care Access to vocational rehab Access to IAPT (improving access to psychological therapies) Robust equipment provision Data source GP registers Identification of patients whose presentations may be best managed with support from palliative care services Where there are national registers / guidelines it is expected these are included in the guidelines Engagement with palliative care systems such as Coordinate My Care or other local schemes