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Guidance for commissioners of mental health services for people with learning disabilities


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This guide is about the commissioning of mental health services for people with learning disabilities, enabling them to live full and rewarding lives as part of their local communities.

This guide is aimed at all commissioners responsible for mental health services for people with learning disabilities including young people in transition to adulthood. The guide will also be helpful for providers of mental health services and for family carers.

This guide describes what we know about mental health services for adults with learning disabilities, and what effective and accessible services look like based on current policy, the law and best practice.

While this guide does make reference to autistic spectrum disorders and ‘behaviours that challenge’ (which people with learning disabilities who have mental health problems may also experience), the primary focus of this guide is on people with learning disabilities who have mental health problems.

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Guidance for commissioners of mental health services for people with learning disabilities

  1. 1. Guidance for commissioners of mental health services for people with learning disabilities 1Practicalmental healthcommissioningGuidance for commissioners ofmental health servicesfor people withlearning disabilitiesJoint Commissioning Panelfor Mental
  2. 2. Joint Commissioning Panelfor Mental HealthCo-chaired
  3. 3. 2 Practical Mental Health CommissioningContentsTen key messagesfor commissionersIntroduction04What are mentalhealth servicesfor peoplewith learningdisabilities?Why are mentalhealth servicesfor people withlearning disabilitiesimportant tocommissioners?05 07What do we knowabout the currentprovision of mentalhealth servicesfor people withlearning disabilities?09What wouldgood mental healthservices for peoplewith learningdisabilities look like?13Supporting thedelivery of thenational strategy19References20
  4. 4. Guidance for commissioners of mental health services for people with learning disabilities 3Ten key messages for commissionersMany people with learningdisabilities live full and rewardinglives as part of their localcommunities. In order to do this,they need support to have goodmental health and wellbeing.Commissioners need to thinkabout the following:1 The prevalence of mental healthproblems in people with learningdisabilities is considerably higher thanthe general population (see page 7)• commissioning for mental healthproblems must therefore beinformed by a Joint Strategic NeedsAssessment (JSNA) which takes intoaccount the needs of people withlearning disabilities (see page 13).2 In addition to mental illness, peoplewith learning disabilities often havecoexisting autistic spectrum disorders,behaviours that challenge services,offending behaviour, or physical healthconditions (see page 7). It is often hardto distinguish between these conditionsespecially when people have moresevere intellectual impairments.• the JSNA must therefore providedetail about the number and needsof people with learning disabilitieswho have mental illnesses, as well asautism and behaviours that challengeservices.3 While there is no universally agreedcommissioning model for mental healthservices supporting people with learningdisabilities, the NHS Mandate1statesthat an NHS England objective is to:• ensure that Clinical CommissioningGroups (CCGs) work with localauthorities to ensure that vulnerablepeople, particularly those withlearning disabilities and autism,receive safe, appropriate, highquality care. The presumptionshould always be that services arelocal and that people remain in theircommunities, and that a substantialreduction should occur in thereliance on inpatient care for thesegroups of people.4 It is often difficult for people withlearning disabilities to access genericand specialised mental health services.Consequently:• reasonable adjustments are alegal requirement and should beput in place to enable access toall mainstream services whereappropriate• learning disability services shouldbe provided alongside mainstreammental health services so that theskills and expertise from both servicescan be utilised in order to respond toindividual need (see page 14)• there should be clarity with regardto commissioning arrangementsbetween learning disability andmental health commissioners, witha presumption of accessing genericservices wherever possible and thereshould be protocols setting out clearpathways between mainstream andspecialist services.5 The quality of mental health servicesshould be measured from the perspectiveof the individual with learning disabilitiesand their family. Clinical effectivenessand outcomes, and patient safety, arealso key (see page 18).6 A positive experience for the individualwith learning disabilities and their familyis achieved by building a partnershipthrough early involvement in serviceplanning, delivery and evaluation as wellas the provision of timely and seamlessadvice and support especially duringperiods of transition. Involving peoplewith learning disabilities, their familiesand advocates in service planning,enables the provision of individualisedservices, one of the key characteristics ofexemplary care or support2.7 Successful services provideindividualised pathways of care, basedon a thorough understanding of theindividual and their experience. Itshould be person-centred and consistof a coordinated assessment of need,agreement of expected outcomes,provision of care and treatment,followed by a joint review of achievedoutcomes with the people receivingservices and their carers2.8 Commissioners should work inpartnership with provider services inprimary and acute care, and with localauthorities including public health.This is a crucial first step to a betterunderstanding of the needs of thepopulation with learning disabilities andachieving an improvement in overallhealth and well being.• It is important to rememberthat NHS England should bepromoting and facilitating joint andcollaborative commissioning by localauthorities and CCGs to support thedevelopment of better services.9 Commissioning of mental healthservices should support thedevelopment of local, person-centredservices, leading to the development ofskilled local providers (see page 13).10 Commissioners should evaluate theoutcomes of the service models theyare providing, checking for evidenceof effectiveness, safety and usersatisfaction. They should use this toagree priorities for investment as thecommissioning landscape changes andpersonal budgets become more popular(see page 18).
  5. 5. The Joint Commissioning Panelfor Mental Health (JCP-MH)( is a newcollaboration co-chaired bythe Royal College of GeneralPractitioners and the RoyalCollege of Psychiatrists,which brings together leadingorganisations and individualswith an interest in commissioningfor mental health and learningdisabilities. These include:• people with mental health problemsand carers• Department of Health• Association of Directorsof Adult Social Services• NHS Confederation• Mind• Rethink Mental Illness• National Survivor User Network• National Involvement Partnership• Royal College of Nursing• Afiya Trust• British Psychological Society• Representatives of the EnglishStrategic Health Authorities(prior to April 2013)• Mental Health Providers Forum• New Savoy Partnership• Representation fromSpecialised Commissioning• Healthcare FinancialManagement Association.The JCP-MH is part of the implementationarm of the government mental healthstrategy No Health without Mental Health3.IntroductionThe JCP-MH has two primary aims:• to bring together people with mentalhealth problems, carers, clinicians,commissioners, managers and othersto work towards values-basedcommissioning• to integrate scientific evidence, theexperience of people with mental healthproblems and carers, and innovativeservice evaluations in order to produce thebest possible advice on commissioning thedesign and delivery of high quality mentalhealth, learning disabilities, and publicmental health and wellbeing services.The JCP-MH:• has published Practical Mental HealthCommissioning4, a briefing on the keyvalues and principles for effective mentalhealth commissioning• provides practical guidance and adeveloping framework for mental health• will support commissioners of publicmental health to deliver the best possibleoutcomes for community health andwellbeing• has so far published thirteen other guideson the commissioning of primary mentalhealth care services5, dementia services6,liaison mental health services to acutehospitals7, transition services8, perinatalmental health services9, public mentalhealth services10, rehabilitation services11,forensic services12, drug and alcoholservices13, specialist community mentalhealth services14, acute care (inpatient andcrisis home treatment)15, older people’smental health services16, and child andadolescent mental health services17.WHO IS THIS GUIDE FOR?This guide is aimed at allcommissioners responsiblefor mental health services forpeople with learning disabilitiesincluding young people intransition to adulthood. Theguide will also be helpful forproviders of mental healthservices and for family carers.WHAT IS THIS GUIDE ABOUT?This guide describes what weknow about mental healthservices for adults with learningdisabilities, and what effectiveand accessible services look likebased on current policy, the lawand best practice.While this guide does make reference toautistic spectrum disorders and ‘behavioursthat challenge’ (which people with learningdisabilities who have mental health problemsmay also experience), the primary focusof this guide is on people with learningdisabilities who have mental health problems.Other guides on commissioning servicesfor people with learning disabilities do exist(for example the publication Improvingthe Health and Wellbeing of People withLearning Disabilities18). It is also importantto remember that all of the commissioningguides produced by the JCP (as outlinedearlier) also equally apply to people withlearning disabilities.4 Practical Mental Health Commissioning
  6. 6. Guidance for commissioners of mental health services for people with learning disabilities 5What are mental health servicesfor people with learning disabilities?WHAT IS A LEARNING DISABILITY?Valuing People, the 2001 White Paper onthe health and social care of people withlearning disabilities, included the followingdefinition of learning disabilities:‘Learning disability includesthe presence of:• a significantly reduced abilityto understand new or complexinformation, to learn new skills(impaired intelligence), with• a reduced ability to copeindependently (impaired socialfunctioning)• which started beforeadulthood, with a lastingeffect on development’19.For a more detailed discussion ofdefinitional issues, please see: IS A MENTAL HEALTH SERVICEFOR PEOPLE WITH LEARNINGDISABILITIES?A mental health service for people withlearning disabilities provides specialistand personalised assessment, and care,treatment and support. The aim is to both(a) minimise the impact of mental illness andbehavioural problems in order to (b) achievean individual’s maximum potential and a lifethat that is fulfilling and integrated with therest of society.There is no one agreed model for mentalhealth services for people with learningdisabilities, and a wide variety of provisionof both community and bed-based services.Due to an absence of a national policy,numerious service models have beendeveloped locally. These include:• jointly provided services where localmental health and learning disabilityservices share facilities, teams andexpertise and agree on outcomes to beachieved• services where there is little jointworking between mental health andlearning disability services and littleevidence of sharing resources• poorly developed local services witha high reliance on out-of-area inpatientplacements• high reliance on mainstream mentalhealth and older adult services, butsometimes without sufficient learningdisability expertise to meet the mentalhealth needs of this client group.In an influential report for the Departmentof Health, Mansell (2007) recommended amodel consisting of local services includingsmall scale housing, work, education andday placements, with skilled staff backedup by specialist advice and support frommultiprofessional teams and access to thefull range of mental health and learningdisability services2. This also emphasisedthe need for practical support and trainingfor family and other carers, including theavailability of short breaks.WINTERBOURNE VIEWRecent events at Winterbourne ViewHospital have highlighted what we alreadyknow about the importance of robustCAMHs and transition services for youngpeople with learning disabilities. People withlearning disabilities are also more prone todevelop dementia at an earlier age.However, this guidance has been writtenbecause people with learning disabilitieshave particular needs that have not alwaysbeen considered by commissioners ofmental health services, and mental healthand learning disability services do not alwayswork well together to provide good supportto people with learning disabilities andmental health problems.HOW WILL THIS GUIDE HELP YOU?This guide draws on current best practiceand policy to describe what good mentalhealth services for people with learningdisabilities should look like.By the end of this guide, readers shouldbe more familiar with the needs ofpeople with learning disabilities who havemental health problems, and should bebetter equipped to commission effectiveand accessible services for them. Theyshould also be better equipped to work inpartnership with social care commissionersin order to commission a full range ofservices that can support people to live intheir own homes and live full and rewardinglives in the community.The guide does not cover Child andAdolescent Mental Health Services(CAHMS). However, there is referenceto good transition to adult mental healthservices. This guide also does not coverforensic services for people with learningdisabilities.
  7. 7. 6 Practical Mental Health CommissioningWHAT ARE THE MENTAL HEALTHNEEDS OF PEOPLE WITH LEARNINGDISABILITIES?People with learning disabilities who havemental health needs, experience a widerange of problems and therefore require awide range of services. They can have thefull range of mental illnesses seen in thegeneral population such as schizophrenia,bipolar disorder, depression, anxietydisorders, specific phobias, agoraphobia,obsessive compulsive disorder and dementia(see page 7).A significant number of people with learningdisabilities display behaviour problems thatare described as challenging. These includeaggressive behaviour directed towardsothers, self-injurious behaviour, and a rangeof socially unacceptable behaviours. Someof these behaviours may be sufficientlysevere to lead to contact with the criminaljustice system. Behaviour described aschallenging should not be confused withmental health problems, although peoplemay have both. There is also a highprevalence of autism spectrum disorders inpeople with learning disabilities who havemental health and behavioural problems.The overlap between mental illness,behaviour problems, offending behaviourand autism is shown in Figure 1, andconsidered further on page 7.What are mental health services for people with learning disabilities? (continued)Figure 1: Mental health needs of people with learning disabilitiesGENERAL POPULATIONLEARNINGDISABILITYAUTISTICSPECTRUMDISORDERMENTALILLNESSCHALLENGINGBEHAVIOUR
  8. 8. Why are mental health services for people withlearning disabilities important to commissioners?There are four main reasons:1 the increased prevalence of mentalhealth problems among people withlearning disabilities, compared to thegeneral population2 the large number of people withlearning disabilities and mental healthproblems that have behaviours describedas challenging, developmental disorders,or other conditions3 the critical need for improvementsin services for people with learningdisabilities4 cost considerations.1 INCREASED PREVALENCEOF MENTAL HEALTH PROBLEMSThere are estimated to be about 1.2million people with learning disabilitiesin England20. Nine hundred thousandare over 18 and 189, 000 are knownto services20. The prevalence of mentalhealth problems in adults with a learningdisability is considerably higher thanfound in the general population. Estimatesof prevalence range between 30% to50%21,3. Although this guide is aboutadults, commissioners will need toplan services for young people comingthrough transition. The prevalence ofpsychiatric disorders among children withlearning disabilities is 36%, comparedto 8% among children without learningdisabilities22.Based on the above estimates, this meansthat a General Practitioner (GP) caringfor a population of 2000, would have32 adults with learning disability on theirregister, of which 10-15 would havemental health problems.Note: for further information on the localprevalence of people with learning disabilitiesplease visit: COEXISTING PROBLEMSFifty percent of people with a learningdisability referred to a community learningdisability service had mental health needsin the same categories as people in thegeneral population23. The remainingproportion had a higher prevalence ofchallenging behaviours and autism.Common co-existing conditions include:• people with learning disabilities havehigh levels of physical ill health. Whencombined with other factors such aspoor access to services, this can resultin a significant level of inequality ofhealth status20. The Confidential Inquiryinto Premature Deaths of People withLearning Disabiliities found that 42%of the deaths they reviewed werepremature. The most common reasonsfor deaths being assessed as premature24were delays or problems with diagnosisand treatment; and problems withidentifying needs and providingappropriate care in response to changingneeds25. Physical health problems canalso trigger or worsen mental healthand behaviour problems. Some physicalproblems can have a major impact onmental health and behaviour (e.g. pain,epilepsy, constipation, infections, andmedication)26.• genetic syndromes such as Prader Willi,Cornelia de Lange and Down syndrome,which are associated with specificmental health and behaviour problems,and for which specialist skill is required20.• autistic spectrum conditions – theprevalence of autism has been reportedto be as high as 20-30% in peoplewith learning disabilities known tolocal authorities20.• behaviours that challenge (10-15%of people with learning disabilities):behaviour can be described aschallenging when it is of such anintensity, frequency or duration as tothreaten the quality of life and/or thephysical safety of the individual orothers, and is likely to lead to responsesthat are restrictive, aversive or result inexclusion27.• dementia: people with learningdisabilities and Downs syndrome are atsignificant risk of developing Alzheimer’sdisease20.• attention deficit hyperactivitydisorder (ADHD), which is knownto co-exist in people with learningdisabilities. Although most studies arein young populations ADHD it is welldocumented that ADHD can persist intoadulthood28,29.Table 1: Estimated prevalence ratesfrom population-based studies ofadults with learning disability21Disorder RateSchizophrenia 3%Bipolar affective disorder 1.5%Depression 4%Generalised anxiety disorder 6%Specific phobia 6%Agoraphobia 1.5%Obsessive–compulsivedisorder2.5%Dementia at age 65 yearsand over20%Autism 7%Severe problem behaviour 10–15%Guidance for commissioners of mental health services for people with learning disabilities 7
  9. 9. 8 Practical Mental Health Commissioning3 CRITICAL NEED FORIMPROVEMENT IN SERVICESPeople with learning disabilities area vulnerable population who have asignificantly higher risk of developingmental health problems which can beoverlooked or wrongly attributed tothe learning disability itself. Undetectedmental health problems cause considerabledistress to the individual and to familycarers, and can lead to expensive andunnecessary placements, when communityplacements break down. Recent events atWinterbourne View have reinforced theimportance of good quality commissioningfor people with learning disabilities whomay also have mental health problems andbehaviours that challenge services. Servicesfor people with these overlapping set ofconditions are expensive, and yet theirquality and effectiveness is not always wellmonitored. Boundary disputes betweenlearning disability services and mainstreammental health services can have adversefinancial implications and produce pooreroutcomes for the person.4 COST CONSIDERATIONSDelay in detection, assessment andtreatment can lead to a progressivedeterioration of mental health andbehaviour. This can lead to the needfor more intensive services for a longerperiod of time, often in a more restrictiveand distant setting. As well as causingunnecessary suffering to the individualand their family, this can increase costssignificantly. Therefore proactive andpreventive approaches should alwaysbe employed.It should be recognisedthat initially, the cost of supporting anindividual in the community may be morethan the cost of a bed-based service.However, commissioners are stronglyurged to consider ‘invest to save’options, as the cost of services thatmeet people’s needs and provide goodoutcomes is likely to reduce over time30.These ‘invest to save’ options include:What do we know about current acute care services? (continued)• creating sufficiently skilled resources incommunity services such as intensiveresponse teams• supporting the development of skilledprovider services• agreeing the principle of seeking toreduce costs of individual services oncethey are firmly established – but in thecontext of demonstrable outcomesand safe practice, and not as a fixed orarbitrary figure per year (it should alsobe recognised that for some peoplethe costs will not reduce, as it is thelevel of support provided which keepsthe person stable, and which will varydepending on the outcome which canfluctuate)• adopting flexible contracting systemsthat can rapidly respond to changes inthe needs of people being supported.Use of mainstream local services mayreduce stigma and negative professionalattitudes, as people are more likely tobecome part of their local community,and staff can see what may be achieved.
  10. 10. What do we know about the current provision of mentalhealth services for people with learning disabilities?This section is divided intotwo parts: (A) current serviceprovision; and (B) wider policyframeworks.A. CURRENT SERVICE PROVISIONPeople with learning disabilities and mentalhealth problems can come into contactwith a wide range of services including:1 primary care2 psychological therapies3 community learningdisability services4 inpatient learningdisability services5 generic mental healthservices6 services at the interface(transition services).The level of coordination betweendifferent service elements can vary,and can also lead to delay and duplicationas well as high costs.1 PRIMARY CAREThe first point of contact with healthservices for many people is primarycare. However, people with learningdisabilities may not know that they areunwell, or may not be able to tell peoplethat something is wrong. A reasonableadjustment that has been made to addressthis issue is the implementation of annualhealth checks as part of a DirectedEnhanced Service (DES), as there is clearevidence that health checks identify unmethealth needs. The DES specifies that theCardiff Health Check or similar approachshould be used for health checks. TheCardiff Health Check includes a section on‘the presence of behavioural disturbance’which may help GPs identify mentalhealth problems. There is also a sectionfor the review of medication. However,only people with learning disabilities whoare known to social services are eligiblefor an annual health check, which tendsto exclude people with mild learningdisabilities, and tightening of eligibilitycriteria will exclude more people. Only53% of those eligible received a healthcheck in 2012, although someareas did much better than others31.See: we know about the number ofpeople with learning disabilities known toGPs, and the number who have had healthchecks, we do not know how many werediagnosed with a mental health problem,or what happened to those that were.However, early detection and treatment,is important.People with mild learning disabilities whoare vulnerable to common mental healthproblems may not have access to the samesupport that might be available to peoplewith more significant learning disabilities.This is because they may not fit easily intomainstream or specialist services.2 PSYCHOLOGICAL THERAPIESA range of psychological services areavailable from community learningdisability and mental health services. Itis government policy that the IncreasingAccess to Psychological Therapies (IAPT)programme should be accessible to peoplewith learning disabilities32. However,there are anecdotal reports that someIAPT services may be excluding peoplewith learning disabilities33. If correct,this represents a breach of equalitieslegislation, and is not the intention ofnational policy.The Department of Health (2009) hasproduced guidelines to improve accessfor learning disability populations32.These include strategies to improveunderstanding of the needs of people withlearning disabilities, removing barriers toaccess, improved engagement with peoplewith learning disabilities and better trainingand development of the workforce34.Recommendations• reasonable adjustments should bemade to local IAPT services to ensurethat people with learning disabilitiescan access them• clear pathways should exist betweenlocal IAPT services and communitylearning disability services (CLDTs)to ensure that no one who requiresaccess to psychological therapies meetsexclusion criteria for both services.3 COMMUNITY LEARNINGDISABILITY SERVICESA significant part of existing mentalhealth services for people with learningdisabilities are provided by psychiatrists,psychologists, nurses and a range oftherapists working in multidisciplinaryteams. These teams often have closelinks with primary care teams throughhealth facilitation nurses and othershared facilities. They should operatein an integrated manner with socialwork and local authority services as partof integrated or joint commissioningarrangements. They may also have linkswith local mental health services providingconsultancy, advice and joint working.They may have professionals with specialexpertise in the management of peoplewith behaviour problems, and may includeintensive response, home treatment orcrisis teams.Guidance for commissioners of mental health services for people with learning disabilities 9
  11. 11. 10 Practical Mental Health CommissioningA recent survey35highlighted the roleof community learning disability servicesto involve:• delivering direct specialist interventionsand specialist advice• reducing health inequalities• supporting health professionals ingeneral and mental health services• reducing out-of-area placements• supporting personalisation• safeguarding• supporting transition between teams(e.g. children and older people)• working with the criminal justice system.Recommendations include:• ensuring that members of thecommunity learning disability service areskilled in the assessment and supportof people with learning disabilitieswho have additional mental healthproblems. This needs to include skillsin risk management and the provisionof community-based support to peoplewho present additional needs.4 INPATIENT LEARNINGDISABILITY SERVICESInpatient services are used when theintensity and severity of mental illness andassociated behaviour problems reachesa level when the individuals and peoplearound them are at risk of harm and theycan not be safely assessed and supportedin community settings. The pattern ofprovision of these services has beenreviewed36. Provision varies, but the mainaim of any inpatient service is to providefocused treatment and support with theaim of getting the individual back into thecommunity as soon as possible. Dischargeplanning should start on admission orbefore. Weaknesses in commissioningcan lead to prolongation of inpatient careas community-based placements are notreadily available.Recommendations include:• appropriate inpatient and communityservices should be accessible to peoplewith learning disabilities where possible• care pathways should span communityservices and the different types ofinpatient beds• community services should workto reduce the numbers of people ininpatient beds and reduce stay to aminimum• inpatient services should be subject tomonitoring, inspection, audit of qualityincluding effectiveness, safety andpatient experience• the skills of local provider servicesshould be developed so that they canmore effectively support people in thecommunity, and do not need to rely oninpatient care as the only alternative.5 GENERIC MENTALHEALTH SERVICESPeople with learning disabilities who havemental health problems may have needsthat are better met in generic mental healthservices. However, in practice, genericservices have often provided a service onlyfor people with mild and borderline learningdisability, although their role has beenreviewed recently36.It is difficult to describe or recommend auniversal interface between generic mentalhealth services. This is because learningdisability services as models of service varyacross the country, and there has beena history of mental health and learningdisability services working separatelywhich has sometimes been exacerbated bydisagreements about eligibility and funding.It is also difficult to tell how many peoplewith learning disabilities access mainstreammental health services, as although allFoundation Trusts should have a flaggingsystem in place, it is not clear how well theyare used. Flagging systems should includethe reasonable adjustments an individualneeds, in order to provide appropriate careand support. In some areas, liaison nurseshave been identified in mainstream mentalhealth services to improve support forpeople with learning disabilities, with somesuccess (see page 18). In-reach functionscan also be provided by learning disabilityservices.A recent systematic review reported thatthere is no evidence that a comprehensivesystem of mental health care can beprovided by hospital-based services orby services on their own37. However, abalance is necessary which includes bothhospital and community components (the‘balanced care’ model). The relevanceof this for people with learning disabilityneeds to be explored.What do we know about the current provision of mental health services for people with learning disabilities? (continued)
  12. 12. 6 TRANSITION SERVICESIn the absence of national guidelines inthe form of National Service Frameworksthere is no consistent model of integratedservice provision between specialist areasof provision (services for young people,adults, older people, rehabilitation, forensicetc). However, the Integrated CareNetwork has summarised the strategiesthat services have used to improve jointworking between services38. Co-locationstructures could stimulate effective andefficient multidisciplinary working. Thechallenge and the opportunity is to findways to work collaboratively, acrossagencies and departments, in a waythat engages staff at all levels and workswith them to develop structures andsystems, rather than imposing them. Theimportance of JSNAs in understandingthe future needs of the population ishighlighted, as is effective engagementof people with learning disability. Theseprinciples would help bridge potential gapsat the interface of services. The GreenLight for Mental Health team have alsodeveloped a toolkit for improving mentalhealth support services for people withlearning disabilities39. These cover primarycare services, mental health services,learning disability services as well as publicand voluntary sector services. Evaluationof the toolkit flagged up obstacles tochange which included a lack of local data;capacity issues and competing priorities;the need to change practices; engagementissues; the challenge of change; and a lackof agreements and pathways40.Due to the high number of childrenwith learning disabilities who havemental health problems, a good CAMHservice and mental health transition foryoung people with learning disabilitiesis vital, and health and social carecommissioners should develop effectivelinks with children’s services to ensureearly planning at transition and jointservices41. The need to overcome existingsilos that lead to adult and child servicesbeing commissioned separately and theimportance of a seamless transition havebeen highlighted recently by JCP-MHguidelines8,17. Services for people withlearning disability who show offendingbehaviour need to be effectively integratedwith mental health services.People from black and minorityethnic groupsAlthough robust data do not exist on thenumber of people with learning disabilitiesfrom black and minority ethnic groupswho also have mental health problems,it is likely that they experience the sameissues as other people from BME groups.In 2010, the National Mental HealthDevelopment Unit reported that:• black ethnic groups are four timesmore likely to experience psychosis thanwhite people• black men are more likely to be admittedvia the criminal justice system• people from BME groups are over-represented in secure services• fear is an ongoing barrier to accessingservices• BME communities feel that they aremore likely to be prescribed higher dosesof medication42.They also reported that around 10%of people with mental health problemsfrom a white ethnic background werehospitalised, compared to 11.5% froman asian or asian British group, 14% froma mixed ethnicity group, and 19% froma black or black British group42.In 2009, Raghavan found that for ethnicminority communities additional barrierswere knowledge and awareness ofservices, language difficulties, one size fitsall (colour blind) services, religious beliefsand social stigma43. Improving culturalsensitivity and cultural competence in staffwill require the improved recognition ofcultural beliefs and practices. A culturallycompetent workforce is able to listen,understand and clarify the needs of peoplefrom ethnic minorities, and to examinetheir own beliefs and assumptions aboutother communities to develop inclusivethinking and behaviour.B. WIDER POLICYFRAMEWORKS/INCENTIVESThese include:1 Winterbourne View report2 Winterbourne View –concordat3 Nothing about us, without us4 Valuing people now5 Payment by Results1 WINTERBOURNE VIEW REPORTThe DH report into Winterbourne Viewrecommended that• all current placements will be reviewedand everyone inappropriately in hospitalwill move to community-based supportas quickly as possible• each area will have a locally agreedjoint plan to ensure high quality careand support services for all children,young people and adults with learningdisabilities or autism and mental healthconditions or behaviour described aschallenging, in line with the modelsof good care; as a consequence, therewill be a dramatic reduction in hospitalplacements for this group of people andthe closure of large hospitals• a new NHS and local government-ledjoint improvement team, with fundingfrom the Department of Health, willbe created to lead and support thistransformation• it would strengthen accountability ofBoards of Directors and Managers forthe safety and quality of care whichtheir organisations provide, setting outproposals to close this gapGuidance for commissioners of mental health services for people with learning disabilities 11
  13. 13. • the Care Quality Commission willstrengthen inspections and regulationof hospitals and care homes for thisgroup of people – this will includeunannounced inspections involvingpeople who use services and theirfamilies, and steps to ensure thatservices are in line with the agreedmodel of care• the improvement team would monitorand report on progress nationally44.2 WINTERBOURNE VIEWREVIEW CONCORDATThe Department of Health furthercommitted itself to work with partnersincluding the Association of Directorsof Adult Social Services and providersto develop practical resources forcommissioners, including:• model service specifications• new NHS contract schedules forspecialist learning disability services• models for rewarding best practicethrough the NHS Commissioningfor Quality and Innovation (CQUIN)framework• a joint health and social care self-assessment framework to support localagencies to measure and benchmarkprogress45.It also gave high priority to involvingchildren, young people and adults withchallenging behaviour and their families,carers and advocates in planning andcommissioning services, and to seekand act on feedback about individualexperience.SafeguardingWinterbourne View highlighted theneed to strengthen adult safeguardingarrangements, as there was an absenceof processes for commissioners to betold about safeguarding alerts, anda failure to follow-up concerns whencommissioners were made aware of them.The government plans to put SafeguardingAdult Boards on a statutory footing,subject to parliamentary approval of theCare and Support Bill. Core membershipwill consist of the local authority, NHSand police organisations. Everyoneinvolved in safeguarding should be clearabout their roles and responsibilities.3 NOTHING ABOUT US WITHOUT USThe Department of Health in collaborationwith The Service Users Advisory Grouppublished the above document in 2001to emphasise the need “to include peoplewith learning disabilities properly ineverything that they do” including theplanning, delivery and monitoring ofservices46.4 VALUING PEOPLE NOWIn 2009, Valuing People Nowestablished cross-cutting themes thatshould underpin services for people witha learning disability: rights, independentliving, control, and inclusion19. Thisdocument provided the following structureto commission better services:• including everyone• personalisation• having a life (including health, housing,work, education, relationships andfamily)• citizenship (including advocacy,transport, leisure and social activities,being safe and having access to justice)• making it happen.5 PAYMENT BY RESULTS (PbR)The introduction of mental health PbR isa major organisational change for bothproviders and commissioners. For the firsttime, clinicians will have a direct impact onthe funding that their organisation receivesthrough their work to deliver high qualitycare and to achieve better outcomes.Commissioners will start to understand indetail how the services they are purchasingmeet the needs of individual people, andhow this directly affects the prospects forpatient recovery47.While PbR has not yet been mandated foruse in learning disability services, a reviewand possible modification of existingneed clusters to improve applicabilityto this population will lead to greaterintegration and improve access to mentalhealth services for people with learningdisabilities48.A national pilot study has led to thedrafting of additional mental healthclusters which result in differing resourceand skill requirements and resulting tariffsfor commissioning mental health servicesfor people with learning disabilities.RecommendationsIt is therefore recommended that (a)any additional need clusters should beused to develop costed pathways ofcare based on need; (b) there should begreater coordination and integration forcommissioning mental health services forpeople with learning disabilities; and (c)need clusters should be used to profile themental health needs of the population ofpeople with lD.What would a good acute care service look like? (continued)12 Practical Mental Health Commissioning
  14. 14. What would good mental health servicesfor people with learning disabilities look like?Public sector agencies havea statutory duty, under theEquality Act 2010 and the NHSand Social Care Act 2008, tomake reasonable adjustmentsto their services, so that theyare accessible and effective forpeople with learning disabilities.This legal duty is ‘anticipatory’, meaningthat mental health agencies shouldconsider, in advance, what adjustmentspeople with learning disabilities needin order to access them. Reasonableadjustments include removing physicalbarriers to access, as well as makingalterations to service delivery, policy,procedure and staff training to ensurethat services work equally well for peoplewith learning disabilities. The EqualityDelivery System (EDS) is designed tohelp NHS organisations improve equalityperformance, embed equality intomainstream NHS business and meet theirduties under the Equality Act.For further information goto for people with learning disabilityand mental health needs should be basedon a clear understanding of the needs ofthe population served.AssessmentCommissioners should ensure thatthe JSNA includes this information,including the needs of young people withlearning disabilities who are in transitionto adulthood. This forms the basis ofcollectively agreed priorities for action setout in the health and wellbeing strategy.However a recent analysis of JSNAssuggests that the information contained inJSNAs on people with learning disabilitiescurrently is unlikely to be of use inplanning services49.Nationally collected data on peoplewith learning disabilities, along withresearch summaries and good practiceguidance can be found on the IHaLwebsite ( The IHaLwebsite also hosts the Self-AssessmentFramework (SAF) results. The SAF,which is now joint with social care, isa helpful tool as it involves specialisthealthcare professionals as well as peoplewith learning disabilities and familycarers in assessing local services, andtherefore provides good evidence of localinvolvement. The SAF brings togethermany standards for learning disabilityservices that are in other documents.Details of the SAF and assessment resultscan be found at: developmentCommissioners should work with theirlocal authority colleagues to develop arange of responsive local services whichcan prevent admissions to hospital or otherlarge institutional settings, and allow anyexisting patients to be moved to bettersettings, closer to home44. This is anessential first step to avoid unnecessaryand expensive admissions. Pooled budgetsare an important way of developing sharedownership, and eliminating cost shunting.Mansell (2007) classified senior managersand commissioners by their intentionsin relation to services for people whochallenge, which can also be appliedto services for people with learningdisabilities and mental health2. It isrecommended that local models shouldaim to be ‘developers’:• ‘removers’ seek to place people whocannot be served locally in out-of-area placements. They do not seekto develop local competence, maybebecause they think that it is not worththe effort or too difficult.• ‘containers’ do provide local services butonly provide low-cost, poorly staffedfacilities that contain people.• ‘developers’ seek to provide servicesthat meet individual needs, andgive higher priority to funding theseservices, with more staff, training andmanagement input.Building on the Mansell report, theGuide for commissioners of services forpeople with learning disabilities whochallenge services developed somepractical advice for commissioners wantingto nurture a culture of developmentrather than containment or removal30.Recommendations include:• basing all decisions on a clear set ofvisions and values, with a commitmentto ‘ordinary life’ principles• working in partnership with individualsand families• taking a medium to long-term approachto progress and not expecting unrealisticshort-term gains• all partners being willing to do ‘whateverit takes’ to achieve positive outcomes,even when the going gets difficult• identifying and supporting innovatorsand risk takers• strong clinical leadership that iscommitted to the vision and topartnership working• commissioners (including care managers)and clinicians working together well,and using each others’ expertise• a trusting relationship betweencommissioners and providers rather thanone based on arms-length contracting• the NHS and local authority bringtheir resources together and agreeingclear boundaries based upon sharedresponsibility• choosing providers who have a positiveattitude to partnership, who are outwardlooking, who don’t give up in difficulttimesGuidance for commissioners of mental health services for people with learning disabilities 13
  15. 15. 14 Practical Mental Health Commissioning• staff being recruited on the basis oftheir attitude, in particular towardspositive risk taking, at least as muchas their formal skill base• not using agency staff.Mandate for NHS EnglandAn NHS England objective is to: ensurethat CCGs work with local authorities toensure that vulnerable people, particularlythose with learning disabilities and autism,receive safe, appropriate, high qualitycare. The presumption should always bethat services are local and that peopleremain in their communities; and theMandate contains an explicit expectationof a substantial reduction in reliance oninpatient care for these groups of people1.SPECIALIST TEAMSIn order to support community learningdisability services and primary mentalhealth care teams, commissioners shouldcommission services that provide goodmental health assessment, treatment andsupport with expertise in working withpeople with learning disabilities. This couldbe within an existing specialist learningdisability team, as a specialist mentalhealth team, or part of generic mentalhealth services. This should include (butnot necessarily be limited to):• mental health and learning disabilitynurses• clinical psychologists• psychiatrists• speech and language therapists.Staff should have a strong commitment, andbe skilled at working in a person-centredway to provide individualised services basedon the person’s aspirations. They should beskilled in mental health issues and be able toprovide a range of interventions includingpsychological therapies. In addition, theyshould have skills in positive behavioursupport approaches for those people thatrequire it (positive behaviour support is aframework for developing an understandingof an individual’s behaviour, and for using thisunderstanding to develop effective support).Staff should also be able to work witha range of different agencies. Thereshould be strong clinical leadership whichpromotes a ‘no blame’ culture, enablingstaff to take appropriate risks so thatpeople can live as independently aspossible in their own homes. Their focusshould be on providing expertise so thatpeople can be supported at home in thelocal communities wherever possible.There must be clarity with regard tocommissioning arrangements betweenlearning disability and mental healthcommissioners. There should be apresumption of accessing generic serviceswherever possible, and there should beprotocols setting out clear pathwaysbetween mainstream and specialistservices, including the support beingprovided by specialist practitioners tomainstream services.The Green Light Toolkit (2004) providesstandards for joint working in a numberof areas an example of which is providedin box 139. This toolkit is currently beingrevised.The service should also be commissionedin partnership with the local authoritycommissioners of learning disabilityservices and the specialist mental healthservices operating as part of an integratedapproach to service design and delivery.At the core of good practice lie thejoint working arrangements betweengeneral adult mental health services andcommunity learning disability services.This collaboration can ensure that carepathways for people who may needsupport for mental ill health are clearlydelineated and that high-quality care,including reasonable adjustments wherenecessary, is delivered promptly36.Adjusting mental health services tomeet the needs of people with learningdisabilities will not only enable servicesto meet their needs under equalitieslegislation, but is likely to improve thequality of services.USEFUL RESOURCESThe Commissioning For Quality andInnovation payment framework (CQUIN)is a commissioning tool which makesa proportion of the providers incomeconditional on delivering quality andinnovation. It has been used in mental healthservices to improve access for people withlearning disabilities (see page 18).What would good mental health services for people with learning disabilities look like? (continued)BOX 1: JOINT WORKINGRoles, responsibilitiesand cross-service support• protocols for transfer or sharedcare between learning disabilityand generic mental health servicesexist and clearly specify consultantresponsibility• protocols for transfer or sharedcare between learning disabilityand mental health services existand clearly specify the roles andresponsibilities of inpatient andcommunity teams in both mentalhealth and learning disabilityservices• where a person with a learningdisability is having services fromboth mental health and learningdisability services there is joint careplanning at an individual level• where a person with a learningdisability is having services fromboth mental health and learningdisability services the written careplan specifies what support eachservice can expect from the other.One or none of the features apply (red)Two or three of the features apply(amber)All of the features apply (green)
  16. 16. Guidance for commissioners of mental health services for people with learning disabilities 15Personal Health Budgets in the NHS andPersonal Budgets in social care are at theheart of personalisation, and should alwaysconsider facilitating recovery for peoplewith mental health problems: ‘Peoplechoosing Personal Budgets and a PersonalHealth Budget should have the right to anintegrated assessment across the NHS andsocial care, an integrated support plan, asingle individual budget and an integratedreview, regardless of how they choose tohold the money.’50Most areas still have Learning DisabilityPartnership Boards which were set up as aresult of Valuing People and which bringtogether commissioners, service providers,people with learning disabilities and familycarers amongst others, and provide helpfullinks to wider self-advocacy and familycarer groups. They can be an excellentsource of information about local needs.KEY SERVICE COMPONENTSPeople with learning disabilities will accessa range of primary care and local authorityservices during their lives. A proportionwill need additional secondary services,and a minority will receive the full rangeof services. To achieve this primary careteams led by GPs, secondary mentalhealth services and learning disabilityservices should be well integrated sothat individual service users can receivecoordinated care. Planning ahead is crucial.Advocacy services should be available, andindividuals should have proper person-centred plans for the services they neednow and in the coming years. Planningahead also means building capacity intothe system to cope with demand as itemerges, rather than waiting until crisesoccur2.The relationships between these keycomponents of the service are representedin Figure 2.Figure 2: Service organisation for meeting mental health needsfor people with learning disabilitiesLevel 1:General servicesLevel 2:GP and acute health careLevel 3: Secondary care(CMHTs, CLDTs)Level 4: Specialist servicesincluding inpatientsLevel 1These services are primarily focusedon improving the health of the wholepopulation of people with learningdisabilities. Good access to housing, leisure,education, transport and employmentare known to have a positive impact onmental health. Other priorities includeneonatal screening, early detection andtreatment for conditions such as congenitalhypothyroidism and phenylketonuria.Level 2People with learning disabilities shouldhave good access to mainstream healthservices. In primary care, this meansregular health checks, advice and supporton lifestyle factors such as diet, exercise,alcohol consumption and sexual health.Other services include health facilitation toimprove access to primary care and healthliaison to improve access to acute hospital-based care. Training and support for carersshould be made available. ImprovingAccess to Psychological Therapies isincluded at this level.Level 3Community mental health and learningdisability teams which provide assessment,treatment and some on-going supportfor people with a moderate degree ofmental health need (significant anxietyand depression, psychotic disorders, andcognitive impairment). These teams wouldneed to have expertise in dealing withperceived behaviour problems associatedwith these conditions, as well as the wholerange of learning disability and coexistingautism and ADHD.Level 4These services need to have expertisein dealing with people who are a severerisk to themselves and others, often withchronic severe treatment resistant mentalillness, behaviour problems and offendingbehaviour. Services at this level includecommunity-based assessment and treatmentusing a combination of crisis and hometreatment teams, behaviour support services,forensic teams and experts in autism, ADHD,eating disorders, dementia and epilepsy.Inpatient services may also be requiredwhere 24 hour assessment and treatmentwould enable a safe return to well resourcedcommunity-based packages of care. Theappropriate role for psychiatric hospitalservices for people with learning disabilitieslies in short-term, highly-focused assessmentand treatment of mental illness. This impliesa small service offering very specifically,closely defined, time-limited services. Thereason for admission must be clearly statedand families should be involved in decisionmaking. Where an individual lacks capacityand does not have a family to support them,the procedures of the Mental Capacity Act2005 should be followed to ensure thatdecisions made are in her/his best interestand, if appropriate, an Independent MentalCapacity Advocate appointed.It is unlikely that one geographical areawill provide all the specialist services thatmay be required from time to time (e.g.eating disorders for people with learningdisabilities). Effective pathways andlocal protocols may be required with thespecialist services.
  17. 17. 16 Practical Mental Health CommissioningCOMMISSIONING A PERSONALISEDPATHWAY OF CARETo meet a variety of individualised needsconsistently, effectively, safely and inpartnership, commissioners will need to:• understand the needs of the population• plan intervention and treatment basedon assessed need• ensure/develop corresponding skillsin providers• use person-centred, outcome-focusedtreatment plans• provide incentives to timely achievementof agreed outcomes• develop a range of personalisedpathways of care the core componentsof which are shown on figure 3.This model of service provision relies on anintegrated approach between mental healthand learning disability services. There shouldbe a single point of entry after which theassessment of need commences. This wouldclarify the range of skills best able to meet theassessed need and achieve mutually agreedoutcomes. The agreed care plan is providedby professionals with the appropriate skillsneeded to support the individual to achieveagreed outcomes effectively and safely,regardless of which service or agency theywork for. In some instances, the skills may beavailable wholly in the mental health service,or in the learning disability service. In othercases, there would be a need to share skillsand work jointly across services. In complexcare when several individuals provide careand treatment an agreed individual mustcoordinate the delivery of treatment.Commissioners should “involve children,young people and adults with challengingbehaviour and their families, carers andadvocates in planning and commissioningservices and seek and act on feedbackabout individual experience”45.People with learning disabilities must beable to access other specialist servicessuch as eating disorder, substance misuse,personality disorder services as wellas early intervention, crisis and hometreatment and assertive outreach.OUTCOMESCommissioning of all services shouldfocus on outcomes. Outcomes for theNHS and Public Health Services are setout in The NHS Outcomes Framework2012/13 and Improving Outcomes andSupporting Transparency 2013/1651,52.The Adult Social Care OutcomesFramework 2013/14 sets out theoutcomes for social care53.Although the outcome frameworks containlittle that is specific to people with learningdisabilities, all outcomes apply equallyto people with learning disabilities (andmental health problems). The followingoutcomes frameworks specifically mentionpeople with mental health problems and/or people with learning disabilities:What would good mental health services for people with learning disabilities look like? (continued)Figure 3: Components of pathway of careMental healthneedsAssessment Agreed planof care andtreatmentAgree outcome Treatment Review ofoutcomeOn-goingsupportExit fromservicePUBLIC HEALTH OUTCOMESFRAMEWORKDomain 1 – improving thewider determinants of healthIndicators• people with a mental illness ordisability in settled accommodation• people in prison who have a mentalillness or significant mental illness• employment for those with a long-term health condition includingthose with a learning difficulty/disability or mental illness.Domain 4 – healthcare, public healthand preventing premature mortalityIndicators• suicide• dementia and its impacts.Table 2: Commissioning to improveintegration of mental health andlearning disability servicesProtocols or practices in place to meetthe mental health needs of adults withintellectual disability, jointly agreedbetween services for people withintellectual disability, adult mental healthservices and local authorities.Patient care pathways through adult mentalhealth services that include a wide range ofexpertise and skills such as recovery centres,crisis management, psychological therapies,rehabilitation, assertive outreach and hometreatment teams.Regular interface meetings betweenthe two services to steer the strategicdirection of service developments andresolve problems as they arise, as well asdisseminate examples of good practiceand shared care.Integrated training across services.
  18. 18. Guidance for commissioners of mental health services for people with learning disabilities 17THE ADULT SOCIAL CAREOUTCOMES FRAMEWORKDomain 1 – enhancing qualityof life for people with care andsupport needs• proportion of adults with a learningdisability in paid employment• proportion of adults in contact withsecondary mental health services inpaid employment• proportion of adults with a learningdisability living in their own homesor with their family• proportion of adults in contact withsecondary mental health servicesliving independently, with orwithout, support.A recent review of health inequalitiessuggested five determinants of healthinequalities experienced by people withlearning disabilities26. These are:• social determinants of poorerhealth such as poverty, poorhousing, unemployment and socialdisconnectedness• physical and mental health problemsassociated with specific genetic andbiological conditions in learningdisabilities• communication difficulties and reducedhealth literacy• personal health behaviour and lifestylerisks such as diet, sexual health andexercise• deficiencies in access to and thequality of healthcare and other serviceprovision.The Health Equality Framework (HEF)works by monitoring the degree andimpact of people with learning disabilitiesto these determinants54. Attention isfocused on the systems around theindividual so that needs are identified andmet. The outcome of service involvementwould be a reduction in the adverseimpact of exposure to such determinantsand therefore a reduction in healthinequality.Health Inequality Indicators have beendeveloped for each determinant. Eachindicator has graded impact levels withassociated adverse health consequences.Commissioners should track outcomesfor people with learning disabilitiesand mental health problems to ensurethey are reducing health inequalities.See: 3: Possible outcomes of treatmentImprovement in degree of mental healthneed requiring reduced level of supportImprovement in degree of mental healthneed enabling the person to live in theleast restrictive environmentShortest length of time taken to returnto optimum functioning by movingthrough a personalised pathway of careand treatmentReduction in levels of harmful effects oftreatment (e.g. medication, carer distress)Maintenance of improved level offunctioningLong-term impact of residual behavioursand on-going treatmentA challenge to commissioners of servicesis the measurement of quality. Outcomeframeworks for use in these services havebeen developed using the core qualitymeasures55. Possible outcomes that may beagreed at the outset are shown in Table 3.OUTCOME MEASURESThe 18 item Health of the NationOutcome Scales for People with LearningDisabilities (HoNOS-LD) provides clinicianswith a measure of effectiveness of carefocussing on behaviour and mentalhealth, physical health and personal socialfunctioning56. The Health of the NationOutcome Scale has been used in peoplewith mild degrees of learning disability57.There are no agreed measures of safetyacross services though most trusts gatherdata with regard to adverse incidents,violence and aggression, and medicationerrors.User experience measures are beingdeveloped and the 14 item Warwick–Edinburgh Mental Well-being Scale(WEMWBS) is being trialled in mentalhealth services58.NHS OUTCOMES FRAMEWORKDomain 1• preventing people from dyingprematurely• reducing premature death in peoplewith learning disabilities.Domain 2• enhancing quality of life of peoplewith long-term conditions• enhancing quality of life for peoplewith mental illness.2.5• employment of people with mentalillness• enhancing quality of life for peoplewith dementia.2.6indicator to be developed (but see 4• ensuring people have a positiveexperience of care• improving experience of healthcarefor people with a mental illness.4.7• patient experience of communitymental health services.
  19. 19. 18 Practical Mental Health CommissioningQUALITY ATTRIBUTES OF SERVICES– PERSPECTIVES OF PEOPLE WITHLEARNING DISABILITIESWhen a group of people with learningdisabilities were specifically consultedabout improving commissioning servicesfor people with mental health problemsthe following issues were highlighted59.• staff awareness of crowdedenvironments in services andinappropriate mix of individuals• acknowledging the views of peopleusing services• the importance of physical health care• checking of service quality byindependent agencies and by patients• choice of services and avoidanceof delays and waiting, and a strongpreference for effective and safe services• support for people to express their viewsand understand their rights• understanding the need for individuallytailored services• have a pathway of care shared bypatients and professionals• have a treatment plan that is understoodby patients and who can determine howto move forward and work towardsdischarge.WORKFORCE DEVELOPMENTThere has been acknowledgement that theprovision of high quality services dependon the availability of staff with appropriateskills to meet the mental health problemsexperienced by people with learningdisabilities including autism and behavioursthat challenge services41. Recruitment,training and supervision of staff are seenas key determinants of good outcomes.Skills for Health are developing a code ofconduct and training standards for healthcare support workers.INNOVATIVE PRACTICE EXAMPLESThere are a number of good practiceexamples (some about mental health)in the separate Good Practice documentpublished alongside the DH Review ofWinterbourne View60.Salford and Tower Hamlets services,for example, have been regarded asan example of notable practice inredesigning services.Cumbria adapted their IAPT pathwayto improve access for people withlearning disabilities. They used easy readmedication and self-help guides, allowedtime for reading core questionnaires, andused a smaller set of techniques that wereless cognitively demanding. They alsoencouraged supporters to attend therapy.Avon and Wiltshire Partnership NHS Trusthave a CQUIN agreement in place. Theagreement includes the implementation ofthe MENCAP ‘Getting it Right’ charter inall inpatient wards61.Hospital passports have also beenimplemented for all people with learningdisabilities who are admitted to the service.There is also a learning disability linkperson on each ward, who can help adviseon reasonable adjustments. A staff surveyand focus groups helped identify the issuesthat needed tackling. Areas also did abenchmarking exercise before and afterthe implementation of training to measureprogress, and have put resources on theTrust intranet.Reasonably Adjusted? contains a numberof examples of reasonable adjustmentsused in mental health services62. TheFoundation for People with LearningDisabilities has in its Mental Health andLearning Disabilities programme givenpriority to informing and advising peoplewith learning disabilities experiencingmental health problems and their familieshow to navigate the mental health systemthereby empowering them to take controlof their mental health care.What would good mental health services for people with learning disabilities look like? (continued)Noteworthy practice in Salford• influencing placing authoritiesabout their choice of provider• learning disability was ”everybody’s”concern in the local authorityincluding housing, transport an leisure• distributive model of leadership• starting point was “ordinary”services that were adapted ratherthan “specialist“ services that werecreated• “one person at a time” strategyfor planning• positive behaviour support isthe value-based framework forresponding to clinical problems• positive strategic partnerships to blurinterfaces and professional silos.Noteworthy practicein Tower Hamlets• comprehensive JSNA focused onreducing health inequalities• extensive use of local mentalhealth services with very activesupport for people with learningdisabilities to do so• an agreed protocol with adultmental health services• psychiatrists employed by thelocal mental health trust to enablelocal and strategic links• pooled budget arrangements• co-working between learningdisability services and the mentalhealth home treatment team.
  20. 20. Supporting the delivery of the national strategyNO HEALTH WITHOUTMENTAL HEALTHCommissioning that leads togood services for people withlearning disabilities who havemental health needs supportsthe delivery of the mentalhealth strategy.Shared objective 1:More people will havegood mental health.By commissioning a mental health servicefor people with learning disabilities whichencourages primary care services to workclosely with secondary mental healthand learning disability services to enablebetter health checks and screening, jointassessments, treatments and greatermainstream opportunities with optimalsupport the mental health of this groupwould be expected to improve.Shared objective 2:More people with mentalhealth problems will recover.Commissioning high quality serviceswhich take a holistic and personalisedapproach to care will enhance recoveryand reduce long-term disability in peoplewith learning disabilities who often havemultiple complex mental health problemsalongside with additional difficulties ofstigma and social obstacles which have tobe overcome.Shared objective 3:More people with mentalhealth problems will have goodphysical health.Commissioning good services for peoplewith learning disabilities who have mentalhealth problems will ensure that frequentlycoexisting physical ill health is also dealtwith in a timely and effective manner so asto improve outcomes for both physical andmental health.Shared objective 4:More people will have a positiveexperience of care and support.Commissioners of mental health servicesfor people with learning disabilitiescan ensure that assessment, treatmentand providing support to lead a full lifewill make progress in all domains oflife including education, employment,accommodation and a rewarding socialnetwork.Shared objective 5:Fewer people will sufferavoidable harm.Commissioners of good quality mentalhealth services for people with learningdisabilities must expect that servicesheighten safety of this vulnerable groupby prevention of avoidable harm frompoor quality services where there is noeffective timely and person-centred healthcare. Well coordinated, effective servicesprovided in partnership with patients andcarers can reduce avoidable harm.Guidance for commissioners of mental health services for people with learning disabilities 19Shared objective 6:Fewer people will experiencestigma and discrimination.Commissioners of high quality mentalhealth services for people with learningdisabilities will ensure that the doubledisadvantage that people with learningdisabilities and mental ill health have isrecognised and effectively overcome,so that there is a positive experience ofthe life and a greater likelihood of themaximising of individual potential.A recent review of recovery in learningdisability services has suggestedthat the term recovery needs to beredefined as it may not “fit naturallywith the lived experience of a lifelongcondition”(learning disability). This reviewcalls for a review of existing services toassess the extent to which they are trulyrecovery orientated63.The Monitor Compliance Frameworkalso requires NHS Foundation Trusts toput protocols in place to ensure pathwaysof care are reasonably adjusted. Thisincludes putting a mechanism in place toidentify and flag patients with learningdisabilities, and protocols that ensure thatpathways of care are reasonably adjustedto meet their needs.
  21. 21. 20 Practical Mental Health CommissioningExpert Reference Group Members• Ashok Roy (ERG Co-chair)Consultant Psychiatrist andCommissioning Lead (RCPsych)Coventry and WarwickshirePartnership NHS TrustIntellectual Disability FacultyRoyal College of Psychiatrists• Sue Turner (ERG Co-Chair)Improving Health and LivesProject ManagerNational Development Teamfor Inclusion• Jo HoughFamily Carer and Co-ordinatorNational Valuing Families Forum andCo-Director of Inclusion East CIC• Alick BushLead Psychologist and Chair (Senate)St Andrews Hospital, NorthamptonLearning Disabilities ProfessionalSenate• Fran SingerCo-ordinatorNational Involvement PartnershipNational Survivor and User Network• Andrea Pope-SmithDirector of Adult, Housingand Community ServicesDudley Metropolitan Borough Council• Ann NormanLearning Disabilities and CriminalJustice Nursing AdviserRoyal College of Nursing• Asif ZiaClinical DirectorLearning Disability andForensic ServicesHertfordshire Partnership,University NHS Foundation Trust• Jonathan CampionDirector for Public Mental Healthand Consultant PsychiatristSouth London and MaudsleyNHS Foundation Trust• Karen DoddAssociate Director (SpecialistTherapies) and Faculty Chair (BPS)Specialist Therapies, Surrey and BordersPartnership NHS Foundation TrustBritish Psychological SocietyLearning Disability Faculty• Regi Alexander(PIC LDS, Norfolk)Consultant PsychiatristPartnerships in Care LD Services• Tim BreedonDirector of NursingSouth West Yorkshire PartnershipNHS Foundation TrustReferences1 Department of Health (2012).The Mandate: a mandate fromthe government to the NHSCommissioning Board: April 2013 toMarch 2015.2 Mansell J (2007). Services forpeople with learning disabilities andChallenging Behaviour or MentalHealth Needs: report of a projectgroup. Department of Health.3 HM Government (2011). No healthwithout mental health: a crossgovernment mental health outcomesstrategy for people of all ages.Department of Health.4 Bennett A, Appleton S, Jackson C(eds) (2011). Practical mental healthcommissioning. London: JCP-MH.5 Joint Commissioning Panel forMental Health (2012). Guidance forcommissioners of primary mentalhealth services. London: JCP-MH.6 Joint Commissioning Panel forMental Health (2012). Guidance forcommissioners of dementia services.London: JCP-MH.7 Joint Commissioning Panel forMental Health (2012). Guidance forcommissioners of liaison mental healthservices to acute hospitals. London:JCP-MH.8 Joint Commissioning Panel forMental Health (2012). Guidancefor commissioners of mental healthservices for young people making thetransition from child and adolescent toadult services. London: JCP-MH.9 Joint Commissioning Panel forMental Health (2012). Guidance forcommissioners of perinatal mentalhealth services. London: JCP-MH.10 Joint Commissioning Panel forMental Health (2012). Guidance forcommissioners of public mental healthservices. London: JCP-MH.
  22. 22. Guidance for commissioners of mental health services for people with learning disabilities 2111 Joint Commissioning Panel forMental Health (2012). Guidance forcommissioners of rehabilitation servicesfor people with complex mental healthneeds. London: JCP-MH.12 Joint Commissioning Panel forMental Health (2013). Guidance forcommissioners of forensic mentalhealth services. London: JCP-MH.13 Joint Commissioning Panel forMental Health (2013). Guidance forcommissioners of drug and alcoholservices. London: JCP-MH.14 Joint Commissioning Panel forMental Health (2013). Guidance forcommissioners of community specialistmental health services. London: JCP-MH.15 Joint Commissioning Panel forMental Health (2013). Guidance forcommissioners of acute care – inpatientand crisis home treatment. London:JCP-MH.16 Joint Commissioning Panel forMental Health (2013). Guidance forcommissioners of older people’s mentalhealth services. London: JCP-MH.17 Joint Commissioning Panel forMental Health (2013). Guidance forcommissioners of child and adolescentmental health services. London: JCP-MH.18 IHAL,RCGP, RCPsych (2012).Improving the Health and Wellbeingof people with learning disabilities:an evidence-based guide for ClinicalCommissioning Groups.19 Department of Health (2009)/ ValuingPeople Now: a new three year strategyfor people with learning disabilities.20 Emerson E, Baines S, Allerton L, WelchV (2012). Health Inequalities andpeople with learning disabilities in theUK: 2012. Improving Health and Lives:Learning Disability Observatory.21 Smiley E. Epidemiology of mentalhealth problems in adults witha learning disability: an update.Advances in Psychiatric Treatment(2005)11:214-222.22 Emerson E, Hatton C, Robertson J,Roberts H, Baines S, Glover G (2012).People with Learning Disabilities inEngland 2011. Improving Health andLives: Learning Disability Observatory.23 Radhakrishnan V, Smith K, O’Hara J.The Mental Health Clustering Toolfor people with severe intellectualdisability. The Psychiatrist (2012) 36:454-458.24 Heslop P, Blair PS, Fleming PJ, HoghtonMA, Marriott AM, Russ LS (2013).Confidential Inquiry into prematuredeaths of people with learningdisabilities (CIPOLD): Final report.Norah Fry Research Centre.25 Heslop P, Blair PS, Fleming PJ, HoghtonMA, Marriott AM, Russ LS (2013).Confidential Inquiry into deathsof people with learning disabilities(CIPOLD): Easy read report. Norah FryResearch Centre.26 Emerson E and Einfeld SL (2011).Challenging Behaviour. CambridgeUniversity Press.27 The Royal College of Psychiatrists,British Psychological Society and RoyalCollege of Speech and LanguageTherapists (2007). ChallengingBehaviour: a unified approach). CR144.28 Lindblad I, Gillberg C, Fernell E. Mentalhealth services provided by ADHDand other associated developmentalproblems in children with mild mentalretardation. Developmental Disabilities:A Multidisciplinary Journal (2011)32(6) 2805-2809.29 Crimlisk H. Developing integratedmental health services for adultswith ADHD. Advances in PsychiatricTreatment (2011) 17 461-469.30 NDTI (2011) Commissioning forCommunity Inclusion: Eight EssentialActions. A guide for public sectorcommissioners.31 Emerson E, Copeland A, Glover G(2011). The uptake of health checksfor adults with learning disabilities2008/9-2010/11. Improving Healthand Lives.32 Department of Health (2009).Improving Access to PsychologicalTherapies (IAPT): Learning DisabilitiesPositive Practice.33 Leyin A. Improving Access toPsychological Therapies for people withlearning disabilities. Tizard LearningDisability Review (2011) 16 (5):29–37.34 Dodd K, Joyce T, Nixon J, JennisonJ, Heneage C. Improving Access toPsychological Therapies (IAPT) - isit applicable to people with learningdisabilities? Advances in MentalHealth & Learning Disabilities (2011)5:29–34.35 Moore D and Thorley J (2011).Therole of specialist health services insupporting the health needs of peoplewith a learning disability. Debra MooreAssociates.36 Royal College of Psychiatrists (2012).Enabling people with mild intellectualdisability and mental health problemsto access healthcare services. CR175.37 Thornicroft G and Tansella M. Thebalanced care model: the case forboth hospital and community – basedmental healthcare. British Journal ofPsychiatry (2013) 202: 246-248.38 Integrated Care Network (2009).Integration and learning disability.
  23. 23. 22 Practical Mental Health Commissioning39 Foundation for People with LearningDisabilities (2004). Green Light forMental Health. The Mental HealthFoundation40 SCIE Social Care online (2010). GoingGreen. Learning Disability Today.41 Department of Health (2012).Transforming Care: A NationalResponse to Winterbourne ViewHospital.42 National Mental health DevelopmentUnit (2010). BME Groups and MentalHealth – Presentation and Evidence(Centre for Social Justice Mental HealthReview).43 Raghavan R (2009). Improvingaccess to services for minority ethniccommunities. Learning DisabilityPractice 12(7) 14-18.44 Department of Health (2012).Winterbourne View Summary of theGovernment Response.45 Department of Health (2012).Winterbourne View Review.Concordat: Programme of Action.46 Department of Health (2013).Department of Health Strategy UserGroup OR Nothing about us withoutus.47 Department of Health (2013). MentalHealth Payment by Results Guidancefor 2013-14.48 Bhaumik S, Devapriam J, GangadharanS, Hiremath A, Roy A. Payment byResults for Learning Disability services:a model for the future? Advances inPsychiatric Treatment (2011) 17: 470-47549 Baines S, Emerson E, Hatton C, McLeanJ, Glover G (2013). Joint StrategicNeeds Assessments: How well dothey address the needs of people withlearning disabilities. Improving Healthand Lives.50 The Royal College of Psychiatristsand Association of Directors of AdultSocial Care (2013). The integrationof personal budgets in social care andpersonal health budgets in the NHS.Position statement PS01/2013.51 Department of Health (2012). TheNHS Outcomes Framework 2012/13.52 Department of Health (2012).Improving Outcomes and supportingtransparency.53 Department of Health (2012).The Adult Social Care OutcomesFramework 2013/14.54 Atkinson D, Boulter P, Hebron C,Moulster G, Giraud-Saunders A,Turner S (2013). The Health EqualitiesFramework (HEF). Improving Healthand Lives.55 Roy A and Bhaumik S (2012). Paymentby results in Intellectual Disabilityservices – a vehicle for personalisinghealthcare. Advances in Mental Healthand Intellectual Disabilities 6(2) 89-98.56 Roy A, Mathews H, Clifford P, FowlerV, Martin DM. Health of the NationOutcome Scales for people withlearning disabilities (HoNOS-LD).British Journal of Psychiatry (2002)180: 61-66.57 Wing J K, Curtis RH, Beevor A S.Health of the Nation Outcome Scales(HoNOS) British Journal of Psychiatry(1999) 174: 432-434.58 Tennant R, Hiller L, Fishwick R, PlattS, Weich S, Parkinson J, Secker Jand Stewart-Brown S. The Warwick-Edinburgh Mental Well-beingScale(WEMWBS): development andUK validation. Health and Quality ofLife Outcomes (2007) 5:63.59 Changing our Lives. A consultationevent 2013.60 Department of Health (2012).Winterbourne View Review. GoodPractice Examples.61 MENCAP (2013). Getting it right forpeople with a learning disability. Acharter for Clinical CommissioningGroups.62 Department of Health, Mental HealthNetwork NHS Confederation and NDTi(2012). Reasonably Adjusted? MentalHealth Services and Support for Peoplewith Autism and People with LearningDisabilities.63 Handley E, Southwell O, Steel J.Recovery and intellectual disabilities:a review. Advances in Mental Healthand Intellectual Disabilities 2012). 6(4):192-198.
  24. 24. A large print version of this document is available fromwww.jcpmh.infoPublished May 2013Produced by Raffertys