This guidance is to support commissioners in London developing service .... Developing support services either directly managed through the memory clinic or.
Commissioning guidance and audit tool for the core characteristics of a memory service Produced by the London Dementia Strategy Implementation Task Group
January 2011
C ommis s ioning S upport for L ondon Stephenson House, 75 Hampstead Rd, London NW1 2PL
Contents
1. Introduction .............................................................................................................3 2. The role of memory services in the Healthcare for London dementia pathway ......4 3. The memory service as a gateway to the dementia pathway .................................5 4. Core characteristics of a memory service. ..............................................................6 5. Meeting the core characteristics .............................................................................6 5.1
Single point of referral for all people with a possible diagnosis of dementia ....6
5.2
Accessible and responsive service to aid early identification of dementia .......8
5.3
A full range of diagnostic services and an holistic assessment ........................8
5.4 Initial support and counselling to people with a confirmed diagnosis of dementia and their main carer ...................................................................................9 5.5
Develop a care plan, including signposting to appropriate services ............... 10
6. Staffing a core memory service ............................................................................ 11 7. Discharge and transfer to mainstream services .................................................... 12 8. Performance metrics............................................................................................. 13 9. References and Further Information ..................................................................... 14 10.
Acknowledgements ........................................................................................... 15
11.
Memory Service Core Specification Audit Tool ................................................. 16
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1.
Introduction
This guidance is to support commissioners in London developing service specifications for memory services in line with the development of the local dementia services pathway outlined in the Healthcare for London Dementia services guide (2009). While local resources and local issues may lead to memory services taking on wider roles as they mature or align with other local developments in dementia care, the audit tool accompanying this guidance allows an evaluation of the extent to which current and planned services improve the early diagnosis of dementia, or cognitive impairments that may be a precursor to dementia, and provide a gateway for the improved management of the dementia care pathway.
The guidance sets out those minimum core elements that should characterise a memory service that includes: pre-diagnostic counselling, early diagnosis of the full range of dementias, post-diagnostic initial care planning and acting as a portal to the local dementia care pathway
Early detection, including the detection of the cognitive impairment that can be a forerunner of later developing dementia, will improve the opportunities for people with dementia and their carers to plan to live well with dementia.
The guidance tool is based on the NICE-SCIE (2007) guidance document and the Healthcare for London Dementia services guide (2009). While these two documents outline in fuller detail the optimal configuration for memory services, this guidance and audit tool is intended to support the development of memory services as new commissioning initiatives and help identify the extent to which existing services comply with Healthcare for London guidance
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2.
The role of memory services in the Healthcare for London dementia pathway
Memory services should act as the gateway to the dementia pathway for all those with a diagnosis of dementia. It should provide a lead for the local health community in the early detection of dementia and developing opportunities for those with dementia and their families to live well with dementia. It should provide those living with dementia with a greater understanding of the disease and the increased ability to plan to manage the impact of the progression of the illness.
Through signposting and links with other services, the memory service should support the person with dementia and their carer(s) in navigating their journey along the dementia care pathway. Local circumstances will determine the capacity of the service to build on this base to provide a service which meets the needs of the local community.
Early detection, while the person with dementia retains the capacity to articulate personal preferences, maintains and improves the ability to exercise choice about the management of financial and other important areas of life. This increases the person’s opportunity to be supported by the personalised care arrangements that are the cornerstone to living well with dementia.
Local memory service may develop local initiatives that are attuned to particular local needs, such as the proportion of people with dementia living alone or local cultural diversity. As local models of service will develop beyond the core characteristics outlined, this guidance is not intended to be prescriptive regarding further developments, but to set the basis for developments within the overall framework outlined in the Healthcare for London integrated care pathway for dementia.
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3.
The memory service as a gateway to the dementia pathway
LA Social Care Services
Primary Care Advocacy
People with dementia and carers
Acute Hospitals Specialist OPMH Services
rd
3 Sector Private
Adapted from: Transforming the Quality of Dementia Care: Consultation on a National Dementia Strategy DH 2008
The memory service should provide initial assessments and differential diagnosis of the full range of dementias including young onset dementia. They should have access to material and resources that ensure equitable access to minority groups including ethnic minorities, people with learning disabilities and people with sensory impairment. Services must ensure the use of appropriate diagnostic tools, interpreters or other tools necessary to support the assessment.
For people living with dementia and their family, the memory service staff should posses the skills to convey the confirmation of a dementia diagnosis in a sensitive manner and develop care plans to live well with dementia. With early detection these plans can be developed with the person with dementia before their capacity becomes diminished. These post-diagnostic care plans should always focus on providing personalised care.
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4.
Core characteristics of a memory service.
For this guidance document, at a minimum a memory service should
• • • • •
5.
be the single point of referral for all people with a possible diagnosis of dementia. offer a accessible and responsive service to aid early identification of dementia include pre-diagnostic support, a full range of diagnostic services and an holistic assessment of needs consistent with delivering a sensitive diagnosis offer initial support and counselling to people with a confirmed diagnosis of dementia and their main carer develop a care plan, including signposting to appropriate support services, for the person living with a confirmed diagnosis of dementia and their partner, significant other or main carers that enables them to plan for their future care and support needs as the illness progresses
Meeting the core characteristics
5.1 Single point of referral for all people with a possible diagnosis of dementia
The service description and availability of the memory service should be well publicised in the local community and with GP services.
Self-referral may need to be encouraged in areas where there is evidence of low service uptake via primary care. This may require pro-active encouragement for older people living alone. The characteristic referral route should be via primary care, to ensure that pre-assessment dementia screening by GPs is developed as a routine element of the referral process and to support routine discharge to primary care with post-diagnostic care plans.
This also ensures that local QOF registers more accurately reflect dementia prevalence. Particular groups such as minority ethnic communities or carers of people with learning difficulties, may need to be targeted by tailored information material and targeted distribution modes.
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Referral protocols should be developed to ensure consistency of referral information and reduce delay through serial information requests to the referrer.
With referrals from health agencies other than the GP, standard protocols should identify basic medical history requirements and basic dementia screening information provided with the referral.
Basic screening should include: • •
routine haematology biochemistry tests (including electrolytes, calcium, glucose, and renal and liver function)
• •
thyroid function tests serum vitamin B12 and folate levels
Eligibility for referral should include: • • • •
residence in Greater London area and eligible for registration with a London GP presents with symptoms consistent with suspected cognitive impairment or dementia rather than a physical illness or functional mental illness. people who may have an existing diagnosis of dementia who are not being supported by a specialist older mental health team and require further referral and signposting due to a significant change in care needs people with alcohol-related and AIDS–related dementia
Referrals not appropriate for memory service are: • •
people who already have an existing clinical diagnosis of dementia and are currently under the care of a specialist older adult mental health team. people reporting memory problems following a traumatic head injury
The memory service should have effective liaison arrangements in place with local Community Mental Health Teams, the local borough’s Adult Social Services Department and relevant local and national 3rd Sector organisations. These arrangements should include younger onset dementia. Local circumstances may also support the development of other local agency liaison links such as local borough housing services and general hospital dementia leads. As public knowledge about dementia increases there will be an initial focus on managing increased assessment requests both in current and newly commissioned services from 2010. Existing memory services are already finding this the greatest challenge to their capacity and the prioritisation of early detection through accessible assessment and effective care planning must remain the main focus when making decisions regarding increasing the scope and range of activities of the memory service.
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5.2 Accessible and responsive service to aid early identification of dementia As stigma continues surround dementia, consideration should be given to service location and opening hours, including relationships with out-of-hours services who may act as potential referral sources. Liaison with appropriate local diagnostic services may be improved by locating the memory service in a polyclinic setting
Where there is evidence of inequities in access to early diagnosis, such as some BMER communities, the service provider may need to take particular action to improve access and this should be included in the specification. This could include • • • •
developing specific targeted material in appropriate languages, working with interpreters working with community groups emphasising the cultural competency skills of staff.
Commissioners will need to be informed by their understanding of diversity issues in the population served when outlining their requirements to providers.
A proportion of assessments should be available on a home visit basis to accommodate individuals who are unable to attend the service site through personal factors or fear of stigma. Local circumstances, including public transport links and local population dispersal will influence the decision on the balance of home and site-based assessments.
5.3
A full range of diagnostic services and an holistic assessment Unless the clinical picture is particularly difficult to determine, the memory service as good practice should aim to make an initial assessment within 28 days of receiving a referral letter, with any fuller diagnostic assessment and care planning depending on the complexity of the case.
Memory service staff should be trained in sensitive communication of the diagnosis and take into consideration the person(s) to whom it is most appropriate to communicate the diagnosis.
Early detection may include the detection of the cognitive impairment that can be a forerunner of later developing dementia.
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The memory service should deliver a sensitive diagnosis and post-diagnostic care plan for those diagnosed with dementia and their partner, significant other or main carers and this will improve the opportunities for people with dementia and their carers to plan to live well with dementia
The care planning process should involve an holistic assessment of the needs of the person diagnosed with dementia and consideration of the needs of their partner or main carer, including signposting to a carer’s assessment as appropriate. The holistic assessment should include consideration of cultural and religious needs and any health co-morbidities.
Full information on the implications of diagnosis and the development of a postdiagnostic care plan are likely to involve more than a single meeting with the person living with dementia and/or their partner, significant other or main carers. The service should ensure that it has facilities to conduct these meetings in a calm and uninterrupted manner in a confidential setting. The service specification should require the provider to identify a time limit for the memory services involvement in postdiagnostic support.
Commissioners will need to consider how the core role of the memory service is balanced with the service’s capacity to respond at the margins of case complexity and potential functional overlap.
Complex differential diagnosis might involve liaison with neurological specialists, case review with Community Mental Health Teams and advice to other assessors (i.e. psychologists, OTs, social workers, doctors). Careful attention will need to be paid to the service’s capacity to sustain its core function of good early diagnosis and initial care planning in the routine assessment and throughput of dementia referrals.
5.4 Initial support and counselling to people with a confirmed diagnosis of dementia and their main carer The service specification should require a named member of the memory service team be identified as supporting the initiation of the care plan and provide a named contact with the service throughout the continued post-diagnostic support provided by the memory service.
Local factors will influence the balance of investment between direct provision of support services by the memory service or signposting to other providers, such as 3rd sector providers, Older Peoples Mental Health Services or to emerging primary care structures such as polyclinics.
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Local service models should be developed through engagement with local day services, community groups or 3rd sector providers with relevant experience and skills to provide local support initiatives, such as peer support, dementia cafes, etc.
A variety of possible combinations of partnership arrangements accessed through the local memory service could be developed to support people following a confirmed diagnosis of dementia and local commissioners should involve people living with dementia in planning such support services.
Developing support services either directly managed through the memory clinic or through referral to local partnership arrangements should be responsive to local needs and opportunities. Particular approaches involving non-verbal methods of working with people living with dementia such as music, art therapy and movement may be particularly effective with people who are reluctant or unable to engage with other support initiatives.
5.5 Develop a care plan, including signposting to appropriate services Diagnosis and care planning should provide the person with a diagnosis of dementia and/or their partner or main carer with written information on: • • • •
the signs and symptoms of the particular dementia that they are suffering from the course and prognosis of the condition an account of treatments and their effectiveness (including side effects and risks) and signposting to: o information on local care and support services (statutory and 3rd sector) o sources of financial and legal advice, and advocacy o sources of information on medico-legal issues, including driving o information on relevant local specialist support services e.g. gay and lesbian advice services, black and minority ethnic support services, learning disability support services.
The signposting information element would be a key role for the Dementia Advisor. This new role is currently the subject of a number of National Demonstrator Site pilots. The role of the Dementia Advisor is to improve access to appropriate health and social care, provide support information and advice for people diagnosed with dementia and their carers on a long-term basis and to signpost people to additional help and support as people move along the pathway and have different needs.
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6.
Staffing a core memory service
The staffing compliment outlined here is a minimum requirement consistent with meeting the core characteristics and playing the clinical role outlined in this guidance. Mature memory services with a more developed role and those services responding to particular local issues or opportunities would be expected to build on these minimum requirements, for example; in the provision of post-diagnostic support services, in pursuit of a more educational role with mainstream services or to focus on developing support services for particular groups; e.g. people with learning difficulties, specialist diagnosis of rarer dementias or complex differential diagnosis
At a minimum the staffing compliment could include:
1.0 Team Manager 0.5 Consultant Psychiatrist 1.0 Medical Specialist (Staff Grade Psychiatrist, Geriatrician, Neurologist) 1.0 Nurse with specialist skills in dementia 1.0 Clinical Psychologist 1.0 Social Worker 1.0 Occupational Therapist 1.0 Dementia Advisor 1.0 Administrator
In staffing the team, clinical competencies and capabilities and relevant experience will be key to shaping the service delivery. Achieving an appropriate skill mix may require exercising local discretion in relation to the staffing compliment outlined above. Local needs may be best served by revising this staffing compliment but ensuring the team embodies a similar skill mix to achieve locally the service delivery outlined in this document. Recruitment issues and the intended local professional influence of the team may have a bearing on this local decision making process.
Individual care management should be allocated within the clinical team. Such a service should be able to manage process around 500 referrals per year. Local circumstances will determine local enhancements to this compliment, although it has
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been estimated that a team of 10 WTE staff would be needed to serve a population with 50, 000 people over the age of 65 a.
7.
Discharge and transfer to mainstream services
Depending on the progress of the illness and other material factors, the memory service should notify and transfer the person diagnosed with dementia with their care plan back to their GP and other local support services or to specialised services, such as older people mental health services. This should include identification of the service responsible for prescribing and monitoring any on-going ‘anti-dementia’ drug treatment.
Local decisions to commission the memory service as a provider of long term support need to be balanced with the objectives of early detection and improving dementia care within the mainstream services.
Advantages • •
continuity of support builds service role as source of expert advice on community-based dementia care
Disadvantages • • •
reduces capacity for assessment and reduces throughput reduces urgency of dementia care improvement in mainstream services reduces potential flexibility of the support service provider market
Those services that provide community based support, e.g. domiciliary care, telecare services for older people and supported housing teams could use the care plan to provide the baseline information on which to build their own quality improvements in dementia care. Specialist providers such as the Alzheimer’s Society or fordementia (Admiral nurses) can also have a role in developing support services.
a
Banerjee S and Wittenberg R. The clinical and health economic case for early intervention services in dementia in Department of Health Transforming the quality of dementia care: Consultation on a national dementia strategy, 2008
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Review arrangements or a register of diagnosed patients should be maintained by the service to ensure appropriate patient and carer experience measures can be followedup and any requirement for further advice or guidance can be met without requiring a full re-assessment.
Resource and capacity issues in the memory service should also include consideration of memory services playing an educational role to mainstream support services rather than the service being a sole focus for the provision of dementia care. Commissioners will need to make this decision locally in the context of an overview of the local dementia care pathway and dementia competence in mainstream providers.
8.
Performance metrics
Suggested performance metrics for a memory service produced by Healthcare for London can be found at: http://www.healthcareforlondon.nhs.uk/assets/Mental-health/10-Memory-ServicesPerformance-Metrics-v1.0.pdf
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9.
References and Further Information
The Royal College of Psychiatrists' Centre for Quality Improvement runs an accreditation scheme for memory services. There are more details available at: http://www.rcpsych.ac.uk/clinicalservicestandards/centreforqualityimprovement/memor yservicesaccreditation.aspx
A NICE–SCIE Guideline on supporting people with dementia and their carers in health and social care - National Clinical Practice Guideline Number 42 National Collaborating Centre for Mental Health (2007) http://guidance.nice.org.uk/CG42/Guidance/pdf/English
Dementia services guide Healthcare for London (2009) http://www.healthcareforlondon.nhs.uk/project-documentation-7
Transforming the Quality of Dementia Care: Consultation on a National Dementia Strategy Department of Health (2008) http://www.dh.gov.uk/dr_consum_dh/groups/dh_digitalassets/documents/digitalasset/d h_085567.pdf
London Dementia Strategy Implementation Task Group
Lesley Carter, Department of Health Regional Dementia Lead, London Maggie Owolade, London Regional Manager, Alzheimer’s Society David Truswell, Senior Project Officer for Mental Health in Later Life, Commissioning Support for London Sheila Lakey, Department of Health Carers Programme Lead London Susan Price, Policy & Project Officer, Health and Adult Services, London Councils
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10. Acknowledgements
Special thanks to:
Dr. Geraldine Strathdee, Consultant Psychiatrist and Clinical Director Sean Farran, Lead for Mental Health Commissioning NW London Sector, Commissioning Support for London Dr Seán Haldane, Consultant Clinical Neuropsychologist Victoria Lyons, Practice Development Admiral Nurse Deborah Stinson, Associate Medical Director, South West London and St George's Mental Health NHS Trust Peter Kottlar, Joint Head of Older People Commissioning, Ealing PCT Diane Eagles, Art Psychotherapist
Thanks are also extended to the Healthcare for London Dementia Services guide Clinical Reference Group
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11. Memory Service Core Specification Audit Tool Information Core Characteristics of a Memory Service & National Dementia Strategy (NDS) Objectives NDS 01 Public Information NDS 03 Information for people with dementia and their carers NDS 04 Continuity of support for people with dementia and their carers 1A. Materials 1AA. Material for professionals Information for professional referrers
Information on service available that is targeted at referring professional groups
Service has only general information on service available
1AB Material for patients and their carers Easy Read
Easy Read description of service available
No Easy Read service description available
Access to Translators
Service description available in 3 main local languages
Translation of service description can be arranged
No access to translated information on services
Access to Interpreters
Contract based access to interpreting services
Ad hoc access to interpreting services
Use of family members to interpret
Patient records
Patient record systems integrated with local health information systems
Integrated Patient record systems in development
‘Stand-alone' Patient Records System
Information sharing
Information sharing protocols with GPs and other main referrers available
Information sharing protocols with GPs and other main referrers in development
No work on information sharing protocols identified
Information Governance
Communication Plan available
Communication Plan in development
No work on Communication Plan identified
Confidentiality Policy available
Confidentiality Policy in development
No work on Confidentiality Policy identified
1B Systems
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Referral and assesment Core Characteristics of a Memory Service & Healthcare for London Dementia services guide 2A Referral 2AA Primary Care Referral Referral protocols
Written protocols are available for GP referrals
No work on written protocols for GP referrals identified
2AB Other Referral Sources Referral protocols
Service provides information template for other referrers
Service is developing information template for other referrers
Service has no work on information template for other referrers identified
Service has detailed model of local referral pathway available
Service is developing model of local referral pathway
Service no work identified on modelling local referral pathway
2AC Referral Pathway Referral Pathway
2AD Case Characteristics Service has clear inclusion and exclusion criteria for dementia assessment
Service has no work identified on inclusion and exclusion criteria for assessment
Holistic assessment provided
Service has protocols for holistic assessment
Service does not offer an holistic assessment
Home Assessment
Service has protocols for home assessments
Service does not offer home assessments
Identification of appropriate cases
3A Assessment
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Diagnosis and care planning Core Characteristics of a Memory Service & National Dementia Strategy (NDS) Objectives NDS 05 (Facilitate access to) peer support NDS 06 (Facilitate access to) improved community personal support 4A Diagnosis 4AA Diagnostic Tests NICE-SCIE guidance (2007)
Clinical testing is demonstrably aligned with NICE- SCIE (2007) practice guidance
Clinical testing is not demonstrably aligned with NICE- SCIE (2007) practice guidance
Service has protocols for informing patient & carers of diagnosis
Service has no work identified on protocols to inform patient & carers of diagnosis
4AB Delivering the Diagnosis
4AC Staff training in communicating diagnosis Service provides training and support to staff delivering dementia diagnosis
Service requires no specific training or support for staff delivering dementia diagnosis
5A Post Diagnostic Care Planning 5AA Care Planning 75% or more of diagnosed patients have an holistic care plan
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50-75% of of diagnosed patients have an holistic care plan
25% or less of diagnosed patients have an holistic care plan
5AB Post Diagnostic Support Local Voluntary Sector
Services provides introduction to local Voluntary Sector resources
Serice has no Information on local Voluntary Sector resources
National Information/Support Resources
Services provides information on national Voluntary Sector resources
Services provides no information on national Voluntary Sector resources
Advocacy services
Service provides information on local advocacy services
Service provides no information on Advocacy contacts
Financial Issues
Service provides information on Power of Attorney contacts
Service provides no information on Power of Attorney contacts
Social\Care
Service provides Iinformation on local statutory social care provision
Service provides no information on local statutory social care provision
5B Post Diagnostic Transfer of Care Transfer to mainstream services (including primary care)
Protocols are available for transfer of case to mainstream services
Follow-up Review
Service has structured review process for transferred cases
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No work is identified on protocols for transfer of case to mainstream services
Service is developing a structured review process for transferred cases
No work on structured review of transferred cases identified.
Staffing Core Characteristics of a Memory Service & Healthcare for London Dementia services guide 6A Staffing Minimum staffing configuration
Contracted service includes sessional input by consultant psychiatrist
Contracted service does not include sessional input by consultant psychiatrist
Contracted service includes employment of Medical Specialist
Contracted service does not include employment of Medical Specialist
Contracted service includes employment of service manager
Contracted service does not include employment of service manager
Contracted service includes employment of psychologist
Contracted service does not include employment of psychologist
Contracted service includes employment of care manager/social worker
Contracted service does not include employment of care manager/social worker
Contracted service includes employment of dementia specialist nurse
Contracted service does not include employment of dementia specialist nurse
Contracted service includes employment of an occupational therapist
Contracted service does not include employment of an occupational therapist
Contracted service includes employment of dementia advisor
Contracted service does not include employment of dementia advisor
Contracted service includes employment of an administrator
Contracted service does not include employment of an administrator
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6B Staff Training Staff Training
Service has identified dementia training plans for all staff
Service has no planned approach to dementia training for all staff
Dementia clinical pathway Core Characteristics of a Memory Service & Healthcare for London Dementia services guide 7A Dementia Clinical Pathway Role Differential Diagnosis
Differential cognitive impairment and dementia diagnosis is the primary activity of the service
Differential cognitive impairment and dementia diagnosis is not the intended primary activity of the service
Early Detection & Brief Intervention
The service has protocols for active management of service throughput
No work is identified on the active management of service throughput
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