memory clinics and clinical governance—a uk perspective

INTERNATIONAL JOURNAL OF GERIATRIC PSYCHIATRY

Int J Geriatr Psychiatry 2002; 17: 1128–1132.

Published online in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/gps.761

Memory clinics and clinical governance—a UK perspective

Andrew J. Phipps1* and John T. O’Brien2

1Hundens Lane Resource Centre, Darlington, Co Durham, UK2Wolfson Research Centre, Institute for Ageing and Health, Newcastle General Hospital, Newcastle Upon Tyne, UK

SUMMARY

Background Memory clinics have developed using a range of service models but providing similar functions whichinclude assessment, information, treatment monitoring, education, training and research. Memory clinic development isnow taking place in the UK in the context of clinical governance and the drive for quality improvement. At a strategic levelthis process is driven by the National Service Framework for Older People and the National Institute for Clinical Excellence.Methods The literature describing quality issues in memory clinics is reviewed against a multi-dimensional framework forassessing quality standards.Results and Conclusions The rationing of health care, both explicit and implicit, is discussed in view of limited capacityand financial resources of the National Health Service and the significance of this in determining quality standards is high-lighted. The authors offer a generic quality specification for memory clinic development, using mild cognitive impairment asan illustration of the quality standards that might be achieved and clinical governance systems that must be present to driveforward continuous quality improvement. Copyright # 2002 John Wiley & Sons, Ltd.

key words— memory clinics; clinical governance; quality; rationing; mild cognitive impairment; UK

INTRODUCTION

Memory clinics, outpatient-based services for theassessment and management of those with early pre-sentation of cognitive impairment and dementia, haveincreased considerably in number over the past dec-ade. Initially developed to facilitate research (Wrightand Lindesay, 1995), they now encompass a broaderrole in the care of older people. There is no singledefinition of the role or function of a memory clinic.The literature suggests that most operate a multi-disciplinary model involving assessment, investiga-tion, diagnosis and information-giving (Lindesayet al., 2002). An increasing diversity of focus andscope in service provision has occurred through UKmemory clinics (Lindesay et al., 2002), and nowincludes cholinesterase inhibitor (ChEI) treatmentand monitoring. Memory clinics are discussed in thecontext of a national drive to improve quality in health

care through clinical governance highlighting ten-sions arising both at strategic and operational levelsand we propose a generic quality specification to sup-port memory clinic development.

CLINICAL GOVERNANCE

The essential components of clinical governance liein four areas: quality improvement and maintenance,supportive organisational culture, safety and profes-sional/organisational accountability (McSherry andPearce, 2002). Halligan and Donaldson (2001) con-sider clinical governance as ‘the systematic joiningup of initiatives to improve quality’ and that its frame-work will inform leadership, strategic planning,patient involvement and management of staff. Sim-plistically, improving the quality of services throughthe clinical governance framework has twoapproaches: quality assurance through the setting ofstandards with a culture of continuous qualityimprovement (Freeman et al., 2001). In the former,internal standards are defined and inspected exter-nally to agreed standards and in the latter, a culture

Received 16 July 2002Copyright # 2002 John Wiley & Sons, Ltd. Accepted 19 September 2002

* Correspondence to: Dr A. J. Phipps, Hundens Lane ResourceCentre, Hundens Lane, Darlington, Co Durham, DL1 1DT, UK. Tel:01325 463211. Fax: 01325 488545. E-mail: [email protected]

develops with an internal focus on learning, improve-ment and change.

MEMORY CLINIC DEVELOPMENT

Memory clinics first developed in North America inthe 1970s and subsequently in the UK in the early1980s. A survey of British memory clinics (Wrightand Lindesay, 1995) described the functions of 20such clinics, generally providing hospital-basedmulti-disciplinary assessment, detailed investigationand drug therapy often in a research setting. Howevertheir strategies for identifying patients with Alzhei-mer’s disease fell between two extremes; highthroughput clinics and low throughput clinics. Thetwo extremes differed in the numbers assessed andthe depth of assessment provided, i.e. fewer patientshaving more detailed assessment.

A common aim is to attempt to attract thosepatients with early dementia and recent research inone memory clinic has confirmed that clinic patientsare significantly younger than traditional old age psy-chiatry sector patients, have lower levels of cognitiveimpairment and a wider range of diagnoses (Luceet al., 2001).

A repeat survey of memory clinics in the UK(Lindesay et al., 2002) revealed an increase in thenumber of memory clinics to at least 58 and revealedthat these now provide a broader range of servicemodels, from traditional academic research clinicsto newer NHS funded clinics which tend to be smal-ler, see fewer patients for shorter assessments andconcentrate more on service provision than researchand education. Despite the range of service modelsused, the core functions are specialist assessment,information and advice to patients carers and doctors,initiation and monitoring of treatment and educationand training (Lindesay et al., 2002).

MEMORY CLINICS AND QUALITY—ASTRATEGIC VIEW

Memory clinic development is shaped by nationalstandards driving policy downward through primaryand secondary care trust systems. The overall aim isto improve dementia care with the memory clinic asone part of a pathway of high quality of care.

The national standards in the UK are the NationalInstitute for Clinical Excellence (NICE, 2001) gui-dance on the use of ChEI and the National ServiceFramework for Older People (NSF) (Department ofHealth, 2001). NICE regards ChEI as part of a com-prehensive pathway of care and acknowledges the

expansion of secondary care services infrastructureto support ChEI. Whilst specifically advocating the‘further development of memory clinics’, NICE doesnot provide any definition of what model of care amemory clinic should provide. Guidance is givenfor suitable standards in the pathways of care forpatients starting, maintained on and discontinuingChEI. The NSF reiterates NICE guidance relating toChEI using protocols for prescribing and stating thatspecialist mental health services ‘should includememory clinics’. However, as with NICE, the NSFdoes not give any guidance as to what exactly consti-tutes a memory clinic.

Primary care trusts are required to implement NSFstandards and take into account NICE guidance withintegration into secondary care. General practitioners,patients, carers and voluntary agencies such as theAlzheimer’s Society will all contribute to the develop-ment of services. An area of great importance tohealth care for older people is its integration intosocial care to provide services that are jointlyplanned, funded and delivered (Department of Health,2001; Audit Commission, 2002).

MEMORY CLINICS AND QUALITY—ANOPERATIONAL VIEW

Quality in the setting of health care has been viewedas multi-dimensional and six dimensions of healthcare quality have been described (Maxwell, 1992):

* Effectiveness;* Acceptability;* Efficiency;* Access;* Equity;* Relevance.

In considering the quality of a service, these dimen-sions may be used in conjunction with the frameworkof structure, process and outcome (Donabedian,1988). This approach can be applied to a memoryclinic. Structure describes the buildings and setting,staffing (number and grade of professional disciplinesrepresented), equipment and organisation of the ser-vice (including referral access). Process describesthe interaction of the professionals with patients/carers/referrers (interpersonal aspects of care), theinvestigative and diagnostic protocols used (technicalaspects of care) and the information given to patients/carers/referrers. Outcome, in general terms, describesthe effects of care on the health of patients and theircarers (Donabedian, 1988). This includes diagnosis,management, referral to other professionals and

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Copyright # 2002 John Wiley & Sons, Ltd. Int J Geriatr Psychiatry 2002; 17: 1128–1132.

patient/carer views. Linking structure, process andoutcome to the above dimensions provide a frame-work for comprehensive quality assessment.

There is a small literature specifically addres-sing quality issues. Swanwick and Lawlor (1999)examined the structure of services providing ChEImonitoring and the process of decision-makingleading to continuation or discontinuation. Gilliardand Gwilliam (1996) and Van Hout et al. (2001)focussed on process in the discussion of diagnosisin memory clinics. Logiudice et al. (1999) concen-trated on psychosocial outcome and Lovestone andMurray (2001) on outcome in terms of dementiadetection and ChEI use in the community. The lattertwo studies studied the effectiveness of their serviceswith Lovestone and Murray highlighting the problemsof access and equity in availability of dementia ser-vices and ChEI prescribing.

CAPACITY CONSTRAINTS—STRATEGICAND OPERATIONAL

Business cases for the development of memory clinicsand the necessary increased budgetary demands ofChEI prescribing must bid against a finite pool ofNHS money and will inevitably compete with otherNSF and NICE related projects within Trusts.

A finite budget naturally places limits on new devel-opments and standards for quality improvement withinclinical governance frameworks at a strategic level,which has implications for the achievement of stan-dards at an operational level. This does infer that ration-ing is implicit to the strategic organisation of theNHS. The idea of explicit rationing has been suggested(Maynard, 2000) on the basis of cost effectivenessrather than solely on clinical effectiveness (the currentparadigm), moving the focus away from the health ofthe individual onto the health of the community.

Service level financial constraints limit new build-ing/alteration, staffing, costs of investigation andmedication, implicitly introducing rationing. Thephysical capacity of our inpatient units, day hospitals,clinics and staff resources constrain service develop-ment with the consequence of pressured and demora-lised staff. Services are adapting to the monitoring ofChEI, undertaken by a range of professionals withinthe multi-disciplinary team in home, day hospital orclinic. Funding for extra staff to provide ChEI moni-toring is difficult to obtain, consequently this functionis carried out within existing resources.

It is also important to remember that the traditionalcommunity approach to Old Age Psychiatry (OAP)services, with domiciliary assessment being the norm,

has resulted in a lack of building infrastructure to sup-port outpatient based services such as memory clinics.Substantial capital development combined with aparadigm shift in how some aspects of OAP servicesare delivered, will be required by clinicians, managersand trusts.

Whilst a weakness of this system of financial allo-cation is demoralisation for services whose new fund-ing is withheld, it may have the positive effect offorcing services to think more creatively in terms ofmodels of service, using staff and other resourcesmore efficiently and effectively.

MEMORY CLINICS—A QUALITYSPECIFICATION

We will now discuss our vision for a memory clinic,outlining the aims and quality standards in terms ofstructure, process and outcome and links to clinicalgovernance systems. This is an ‘ideal’ clinic basedon current evidence and best practice. It may be con-sidered as a generic quality specification for a mem-ory clinic taking a broad range of referrals from mildcognitive impairment (MCI) to established dementia,with a wide age range from early onset dementia tothose of more advanced age who are so significantin our clinical workload. The quality specificationmay be adapted for specific groups such as early onsetdementia services and MCI and we use the latter forillustration.

Our vision of a memory clinic focuses on the man-agement and treatment of patients presenting withvery early symptoms and signs of cognitive impair-ment, well before the threshold for a diagnosis ofdementia is reached. The classification and nature ofsuch ‘pre-dementia’ syndromes, which have beendescribed according to different classification systemsas mild cognitive impairment (MCI), age-associatedcognitive decline (AACD) or cognitive impair-ment—no dementia (CIND), remains an area ofactive research. However, there is no doubt that, what-ever the preferred term may be, the presence of mem-ory complaints (from subject and informant)combined with objective evidence of mild impair-ment relative to age matched peers, places subjectsat 10–15 fold increased risk of subsequently develop-ing dementia. The rate of progression from MCIto dementia has been found to be 6–25% per year(Peterson et al., 2001). Therefore MCI is consideredto be a high risk group and informs outcome. In thepast this group may never have been identified inprimary care and if referred would probably havebeen discharged from old age services as being within

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the bounds of normality. However, the AmericanAcademy of Neurology now recommends that allsuch subjects undergo long term follow up becauseof the high risk of progression (Peterson et al., 2001).

AIMS

* To concentrate on a newly identified clinical group(MCI) to clarify diagnosis and refer for treatmentwhen appropriate;

* The pathway of care for MCI will be different tothat of patients with dementia;

* To continue follow up and if dementia isestablished then link seamlessly with existingclinical/community services;

* To complement existing clinical services;* To be identified with ‘best practice’ providing high

standards of care which are regularly evaluatedthrough audit and patient/carer survey;

* Provide multi-disciplinary education, training andresearch.

STRUCTURE

The memory clinic should be a pleasant environment,accessible and convenient, with quiet and spaciousaccommodation which will be safe for patients, carersand staff. The atmosphere should be welcoming, staffshould be courteous, competent and well supervisedwith full multi-disciplinary input into the clinic. Gen-eral Practitioners and other referrers should receiveeducation and training in order to increase their aware-ness of patients who may be in the MCI group and toencourage referral of this group for assessment, whichshould take place promptly following referral to theclinic. All clinic staff should have access to a commoncomputerised patient information system with links toother hospital records and investigative results.

PROCESS

The privacy, dignity and confidentiality of patientsand carers/relatives should be respected at all times.The service provided should be acceptable to themand free of any stigma. Structured and standardisedassessments should be carried out and general infor-mation should be given about the current understand-ing of the problem and future investigations andmanagement. This should be backed up by writteninformation which matches patients and carer needs.Investigations, which may include scanning and neu-ropsychological assessment, should be available with

little delay and should be of a consistent and highstandard using modern techniques. Follow upappointments should be arranged for patients andcarers when all relevant information is available.The extent to which diagnostic information is dis-cussed with patients should be negotiated individuallyand sensitively with them in response to their wishes.Management plans need to be formulated to includepharmacological (ChEI) and non pharmacologicalaspects of care (care package, carer stress, driving,finances and legal issues). All professional staffworking in the clinic should be informed by the bestevidence and best practice available. A multi-disciplinary approach should be used to assesspatients’ needs in a holistic way with home visitingarranged when appropriate. The care pathways withinthe clinic should be informed by NSF standards andNICE guidance seamlessly integrated into existingcommunity services (psychiatric, medical, intermedi-ate care, social services). Memory retraining groupsshould be offered appropriately and take place regu-larly. Clinic staff need to be easily accessible to offeradvice to patients, carers and professionals.

OUTCOME

The MCI group of patients should be correctly iden-tified and their outcome monitored over time. Referralrates for MCI should be monitored over time with theexpectation that referral numbers should increase byimproved case finding in primary care. Patients witha diagnosis of dementia should be referred to existingcommunity services when appropriate. The prescrib-ing, monitoring and outcome of ChEI treatmentshould be regularly audited. Patients and carersshould feel supported and will appreciate a servicethat is sensitive to the particular needs of the MCIgroup, communicated through regular patient/carersurveys.

CLINICAL GOVERNANCE SYSTEMS

Continuous clinical audit will be integral to the clinicwith regular review to monitor the clinical and admin-istrative work of the clinic (structured clinical assess-ment), the use of appropriate investigations, the rigourof diagnostic decision making and the use of ChEIand relevant guidelines. Difficulties at the boundariesof the memory clinic and links to other pathways ofcare in other services must be monitored, so that pro-blems associated with the transfer of care to other ser-vices are identified, discussed and lessons learnt forthe future. Patients and carers need to be regularly

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surveyed in some detail about their experience of carepathways but all attending the clinic will be given afeedback form to allow comments, suggestions andcomplaints to be made. All complaints will be takenseriously and dealt with quickly. Any ‘untoward inci-dents’ will be reported immediately, discussed openlyand action taken to minimise any future occurrence.

Clinic staff will be active in continuous profes-sional development through personal developmentplans, appraisal and revalidation. There will be a cul-ture of openness, learning and change within thememory clinic striving always for higher standardsin the care of our patients.

We envisage that memory clinics for MCI willinitially be centralised to major clinical centres. Overtime expertise and best practice in caring for thispatient group will be widely disseminated with everyservice having the skills and resources to manageMCI, thereby improving access and equity of serviceprovision.

CONCLUSION

Competition for finite resources exists at all levels ofthe NHS organisation. Funding of memory clinicswill require difficult choices, in competition withother service developments within old age psychiatryservices. The business case for establishing and devel-oping a memory clinic requires significant long termfunding and the level of finance provided will deter-mine to a significant extent the quality standards forthe memory clinic to be monitored by clinical govern-ance systems. It would be naı̈ve to suggest that thefinancial and quality issues discussed represent anew situation, but perhaps the current NHS differsfrom that of the past by the rapidly accelerating drivefor change through explicit standards and timeframes, introducing more competition for finite finan-cial resources. Our vision of a memory clinic, ifapplied to all old age services, would have very signif-icant financial implications. Compromise of ourideals must in reality occur but financial constraintshould not prevent us from aiming at higher qualityin our standards of care. Whilst competition for finan-cial resources is inevitable, the procedure for arrivingat a decision to allocate or withhold finance for newinitiatives should be open so that the rationing processis transparent and open to discussion both at strategic

and operational levels. We as clinicians must beinvolved in these difficult decisions.

REFERENCES

Audit Commission. 2002. Forget Me Not Revisited. HMSO:London.

Department of Health. 2001. National Service Framework for OlderPeople. HMSO: London.

Donabedian A. 1988. The quality of care: how can it be assessed?JAMA 260(12): 1743–1748.

Freeman T, Latham L, Walshe K, et al. 2001. How do trusts intendto measure progress in clinical governance. J Clin Governance 9:33–39.

Gilliard J, Gwilliam C. 1996. Sharing the diagnosis: a survey ofmemory disorders clinics, their policies on informing peoplewith dementia and their families, and the support they offer.Int J Geriatr Psychiatry 11: 1001–1003.

Halligan A, Donaldson L. 2001. Implementing clinical governance:turning vision into reality. BMJ 322: 1413–1417.

Lindesay J, Marudkar M, Van Diepen E, Wilcock G. 2002. The sec-ond Leicester survey of memory clinics in the British Isles. Int JGeriatr Psychiatry 17: 41–47.

Logiudice D, Waltrowicz W, Brown K, et al. 1999. Do memoryclinics improve the quality of life of carers? A randomised pilottrial. Int J Geriatr Psychiatry 14: 626–632.

Lovestone S, Murray D. 2001. Acetylcholinesterase treatment—modelling potential demand and auditing practice. Int J GeriatrPsychiatry 16: 1136–1142.

Luce A, McKeith I, Swann A, et al. How do memory clinics com-pare with traditional old age psychiatry services. Int J GeriatrPsychiatry 16: 837–845.

Maxwell RJ. 1992. Dimensions of quality revisited: from thought toaction. Qual Health Care 1: 171–177.

Maynard A. 2000. Evidence-Based Counselling and PsychologicalTherapies: Research and Applications, Rowland N, Goss S (eds).Routledge: London; 44–56.

McSherry R, Pearce P. 2002. Clinical Governance: A Guideto Implementation for Healthcare Professionals. BlackwellScience: Oxford; 12–28.

National Institute for Clinical Excellence. 2001. NICE Guidance onthe use of donepezil, rivastigmine and galantamine for the treat-ment of Alzheimer’s disease. Technology Appraisal Guidance19: 1–13

Peterson RC, Stevens JC, Ganguli M, et al. 2001. Practiceparameter: early detection of dementia: mild cognitiveimpairment (an evidence-based review). Neurology 56:1133–1142.

Swanwick GRJ, Lawlor BA. 1999. Initiating and monitoringcholinesterase inhibitor treatment for Alzheimer’s disease. IntJ Geriatr Psychiatry 14: 244–248.

Van Hout HPJ, Vernooij-Dassen MJFJ, Hoefnagels WHL, GrolRPTM. 2001. Measuring the opinions of memory clinic users:patients, relatives and general practitioners. Int J Geriatr Psy-chiatry 16: 846–851.

Wright N, Lindesay J. 1995. A survey of memory clinics in theBritish Isles. Int J Geriatr Psychiatry 10: 379–385.

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memory clinics and clinical governance—a uk perspective

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