Presentation on theme: "Learning Disability Census"— Presentation transcript:
1Learning Disability Census Awareness eventManchester11 September 2013
2Programme Background Purpose of event Census coverage Data collection Questions
3Learning Disability Policy Lead Department of Health Zawar PatelLearning Disability Policy LeadDepartment of Health
4Winterbourne View Hospital Opened in December 2006Registered for assessment and treatment and rehabilitation for people with learning disabilitiesMost patients placed there under the Mental Health Act by commissioners from across EnglandClosed in 2011 after abuse of patients exposedSeveral reports into events at Winterbourne ViewNHS Report looked at how people were placed thereSerious Case Review gave details of what happened
5Transforming careDepartment of Health Review from May 2011 to December 2012Looked at how people with behaviour that challenges are supported across EnglandInformed by:Other reports and evidence, including CQC inspections of services for people with learning disabilitiesInvolvement and engagement with people with learning disabilities or autism, family carers, providers, commissioners and staffFinal report published in December 2012
6Transforming care - Issues identified Around half of patients were far from homeVery long stays. In some cases over 3 yearsPatients frequently subject to restraintFamilies not allowed to visit patients on wards or in bedroomsClosed culture made abuse hard to spotInadequate access to advocacy for patientsComplaints not handled properly
7Concordat: Programme of Action Signed by more than 50 organisationsOver 60 actions focused on:Improving the quality of care and outcomesPlanning around needs of patients from childhoodEnsuring provision of local, personalised servicesAvoiding unnecessary inpatient assessment and treatmentMoving people from hospital back home or to community support quicklyClear line of sight and responsibility from commissioners to each individual in inpatient settings
8Concordat: Programme of Action Key commitmentsCommissioners to identify people with a learning disability or autism and / or behaviour that challenges, who may also have a mental health conditionTo review identified people’s care and if appropriate move individuals to community settingsLocal joint plans in every area based on models of good care for people of all agesJoint Improvement Programme led by NHS England and Local Government Association to work with local areasOversight of progress through the Learning Disability Programme Board
9Learning Disability Census Concordat action to commission an audit of current (inpatient) services for people with challenging behaviour to take a snapshot of provision, numbers of out of area placements and lengths of stayThe audit will be repeated one year on to enable the Learning Disability Programme Board to assess what is happeningLearning Disability Census identified as way of delivering this actionBased on Count Me In census methodology, but questions changed to focus on issues identified in Transforming careData will be:Published to show what is happening nationallyShared with commissioners to support plans to review people’s care
10Census coverage – who is included? People in inpatient beds for mental and / or behavioural healthcareWho have either Learning disabilities or Autistic Spectrum Disorder (including Asperger’s Syndrome)Any ageAny level of security (General / Low / Medium / High)Any status under the Mental Health Act (Informal or detained)Do not include:People in accommodation not registered with the CQC as hospital bedsPeople in beds for physical health carePeople who do not have either learning disabilities or autism
11What do we want from the Census? How many people with a learning disability or autism are currently in in-patient mental and behavioural care beds?How many have personality disorders or mental illnesses requiring hospital in-patient treatment now?How many are known to local commissioners and being actively managed by learning disability specialists from their home area?How many are working towards a planned discharge?How satisfactory or unsatisfactory are current placements?How does this vary around the country?
12National policy drivers Everyone counts: Planning for Patients 2013/14Guaranteeing no community is left behind or disadvantagedBetter outcomes from mental health servicesNHS Mandate“The NHS Commissioning Board’s (NHS England) objective is to ensure that vulnerable people, particularly those with learning disabilities and autism receive safe, appropriate, high quality care. The presumption should always be that services are local and that people remain in their communities; we expect to see a substantial reduction in reliance on inpatient care for these groups of people”
14CQC Learning Disability Inspection Programme - Background An advisory group was established to provide experience and expertise to CQC150 locations were inspected across NHS, independent healthcare and adult social care settingsWe reviewed whether people experienced safe and appropriate care, treatment and support and whether they are protected from abuseInspections were carried out by CQC inspectors, professional advisors and ‘experts by experience’ both people who have used services and family carers
15Key overall findingsOverall just under half (48%) of locations did not meet the required standardsJust over half assessment and treatment services were compliant with both outcomes (52%), but more people were in services that were non compliant (58%)Independent health care locations were twice as likely to be non compliant as NHS locations (68% and 33% respectively)
16Professor Gyles Glover Co-DirectorLearning Disabilities teamPublic Health England
17Count Me In CensusDesigned to look at ethnic inequalities in treatment for mental and behavioural conditionsRan annually from 2005 to 2010 – Learning disability only covered from 2006Covered all mental and behavioural in-patient hospitals – NHS and independentFollowing Winterbourne View, a key source of information about the scale of inpatient care for people with learning disabilitiesCensus asked about normal use of beds (for people with mental illness or learning disabilities, also about disabilities (including whether each person had a learning disability))
18Count Me In CensusThe next four slides show what the Count Me In census has shown about inpatient care of people who were reported to have learning disabilities. Some were in learning disability beds, some in mental illness bedsThe census also identified 330 people with autism, but without learning disability in mental illness beds - they are not covered here
19Trends in in-patients with LD - 1 Mental Illness vs Learning disability beds:Numbers steady since 2007Increasing proportion in mental illness beds since 2009NHS vs independent sector beds:Increasing proportion in independent sector beds
20Trends in in-patients with LD - 2 Type of in-patient bed:Numbers in A&T beds fairly steadyIncrease in number in Rehabilitation bedsDecrease in numbers in Long Stay and ‘other’ beds(Bed type data lost for 2008)Stay length at time of census:Proportion staying over 5 years fallingSince 2007, small increase in proportion staying less than 12 months
21Substantial proportion with apparently unknown commissioner Type ofcommissioner
22Frequency of incidents The table shows the numbers (and percentage) of patients experiencing each of the types of adverse event shown at least twice and at least ten times in the three months up to the census date. Ten times in three months is on average roughly once per week.
23Rate of use varies widely between areas In-patients per 1000 known to GPs with LDMap shows in-patients in A&T beds for people with learning disability per 1000 people known to GPs in the areas in which they liveNote this map uses a narrower set of data – LD beds only, and only A&T beds, also omits people whose commissioner is unknownLondon
24Health and Social Care Information Centre Catherine Faley Data Collection Section Head & Robert Cavalleri Specialist Learning Disabilities Project LeadHealth and Social CareInformation Centre
25Learning Disability Census - Data Collection Overview of systemRegistration process (During September)Data entry and validation (First 2 weeks of October)Data and definitionsKey messages
26System Lots of benefits Clinical Audit Platform:Lots of benefitsInternet Explorer 7 or above, Google Chrome or Firefox recent versions
27Registration Process Part 1 You will be invited to register when the registration period is openRegistration is a two step process, first of all you get a single sign on (SSO) account.https://login.ic.nhs.uk/Login.aspx?You use an to register, you need to remember this for the next step.You will be invited to register when the registration period is open
28Registration Process Part 2 The organisation then fills in a word document with details of each userThe form is then ed to the Caldicott Guardian who completes the final section and s the document to the Contact centreCaldicott Guardian or equivalent
29RegistrationThe Health and Social Care Information Centre Contact Centre will:verify the Caldicott Guardian; thenthey will add the users to the system; and,send them an letting them know they can start using the system
30Data Entry Prepare data in advance Spreadsheet – format, accurate, complete (refer to dataset)Individual patient record (if “small” numbers, 20 or so), orFile uploadEnsure data are complete and accurate in advance of 30 September
31Data Entry – Individual Record LD Census HomeYou can add a new record hereLD CensusDatabase holds all records previously registered
32Data Entry – Individual Record Enter NHS NumberAnd date of birth
33Data Entry – Individual Record Mandatory items are clearly shownHelp text will be provided for each data itemIf patient exists the system will display data already held
34Data Entry – Individual Record Then add all required data as per dataset:Fields are either mandatory or “required”On the web form and file submission, validation errors will show up as data are submittedHelp text will be available where required next to the data item to which it refersExplain difference between mandatory and required fields – i.e. missing mandatory field will mean you can’t submit – but does that apply to whole submission or just individual record. If individual records rejected on this basis need to make sure they find the information and add the record.
35Data Entry – File Upload If many patients – use file upload (csv format)Guidance will be availableMandatory fields MUST be completed in order to uploadUpload file, report shows errors against relevant rowCorrect any errors and resubmitcsv format – how to do this – there will be guidance
36Data and Definitions Some Key Fields: NHS Number (Q2) Postcode of patient’s usual address (Q5)Patient’s date of birth (Q8)Reason for Hospitalisation (Mental Illness, Learning Disability, Challenging Behaviour, Personality Disorder/Self Harm/Other (Q15)Disability (Sight, Hearing, Learning Disability, Autistic Spectrum Disorder, Mobility Impairment) (Q )Hospital Site Location ID (Q32)Hospital Site Location name (Q33)Hospital Site Location postcode (Q34)Service Type (MH or LD ward) (Q35)Service type – Mental Health or Learning Disability wardDisability – sight, hearing, Learning Disability, autistic spectrum disorder, mobility
37Data and Definitions Learning disability includes the presence of: A significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with;A reduced ability to cope independently (impaired social functioning) which started before adulthood, with a lasting effect on developmentValuing PeopleA New Strategy for Learning Disabilityfor the 21st CenturyA White PaperMarch 2001
38Content and rationale Patient registration information As at 30 September Provides national snapshot of service receiptDefinitive (actual) rather than estimatedIdentifies how close to home people are receiving servicesWhy they are receiving this type of service
39Information on admission Determines formal / informal nature of accommodation treatment and if currentPatterns of referral – which agencies are referring to specialist servicesAre stays lengthy – residential accommodation or assessment and treatment?Which needs are not being met in communities close to home?
40Experience of care Determination of the frequency of incidents: Self harmAccidentsPhysical assaultRestraintSeclusionWhat is the national picture for incidents and how do provider units compare with this?
41Accommodation and location Type of environment – are outcomes associated to facilities?Where are services being provided and for how many patients?
42Patient care detailsIs care planned, agreed and reviewed with access to support from services and families locally?Is medication a significant factor in the provision of treatment and care?Are safeguards in place?What is the cost of care?
43Key Messages Census date = 30 September 2013 Register before then Please complete form in pack with details of contactPrepare data in advanceHelpdesk =
44Health and Social Care Information Centre - Contacts Catherine FaleyJudith EllisonRobert CavalleriHSCIC Contact Centre: