Review f all age Autism services in Sufflk (excluding Waveney) Summary reprt f findings and recmmendatins Octber 2015 Authr: Maija Huttunen-Lenz, Prgramme Manager, Public Health Cnsultant Supervisr: Dr Mashbileg Maidrag, Cnsultant in Public Health 1 P a g e
Cntents Executive summary... 3 1. Backgrund... 4 1.1. Scpe f the paper... 4 2. Epidemilgy... 4 2.1. Prevalence in Sufflk... 4 3. Current Service Prvisin... 5 3.1. Referral pathways, service prvisin and funding... 5 3.1.1. Increase in referral numbers fr children (0-11) pathways... 6 3.1.2. Referral prcess fr lder children (11-17) and adult (18+) services... 6 4. Service design and strategy... 8 4.1. Effective ASD service design... 8 4.2. Strategy develpment arund the United Kingdm... 9 5. Service rganisatin parents and carers view... 10 5.1. Children and yung peple... 10 5.2. Yung adults and adults... 10 5.3. Parent and carers feedback summary... 10 6. Service Prvider Feedback... 10 7. Service specificatins... 11 7.1. Main issues with the service specificatins... 11 8. Service gaps and areas fr develpment acrss services... 12 8.1. Service key utcmes... 12 8.2. Key service indicatrs (KPI s)... 12 8.3. Perfrmance data reprting... 13 8.4. Cmpliance with NICE guidance fr children s services... Errr! Bkmark nt defined. 8.5. Training needs... Errr! Bkmark nt defined. 8.6. Service gaps... Errr! Bkmark nt defined. 9. Discussin... 13 10. Cnclusins... 14 11. Recmmendatins... 15 12. References... 16 Table 1: Prevalence f ASD in Sufflk... 5 Table 2: Service prvisin in Sufflk fr thse with suspected r diagnsed ASD... 7 Table 3: Cmparing the Isle f Wight mdel t the current service deliver in East and West Sufflk... 8 2 P a g e
Executive summary Backgrund Lcal cmmissiners have recgnised that the current service prvisin in Sufflk (excluding Waveney) fr thse with autism spectrum disrder (ASD) is fragmented. The aim f this paper is t bring tgether recent age specific service reviews and evaluatin wrk and prvide an verview f the ASD service prvisin in Sufflk. In additin, this paper reflects pssibilities fr age-inclusive service develpment in Sufflk. ASD Prevalence in Sufflk Based n the uppermst estimatin f ASD prevalence, it is prjected that in general there are up t 9,711 ASD cases in Sufflk which include bth diagnsed and undiagnsed. The UK schl-based ppulatin study 2 estimates that the rati f diagnsed t undiagnsed cases is 3:2. When apply this this rati5,800 f the estimated 9,711 individuals in Sufflk with ASD, culd be knwn t services. Current Service Prvisin Services are delivered by tw prviders and fr three age grups; children (0-11), lder children (11-17), and adult (18+) services. The children s 0-11 ASD service is in-bedded within children s cmmunity health services (namely SCH) as tw separate ASD pathways such as. Services fr lder children (11-17) and adults (18+) are prvided by NSFT as tw stand-alne services. Referral, diagnsis, and fllw-up pathways are service specific and service users cannt mve between services, as there are n system wide handver mechanisms. The prvisins fr lder children (11-17) and adults are currently targeted fr thse require diagnsis and limited shrt-term supprt is ffered. The ASD pathways within SCH fr children (0-11) prvide cmprehensive package f diagnsis, interventins, and supprt. Evidence f effective ASD service design There is a paucity f research available n effective service mdels. Thugh limited, evidence has indicated that service features such as a single pint f access/assessment, cmprehensive infrmatin gathering system, and multi-agency wrking are assciated with an effective service delivery. Service gaps The largest gap in the service prvisin is the lack f pst-diagnstic services fr thse ver the age f 11 and lack f clear pathways fr children wh are in care f SCH when they need access t and supprt frm mental health services, educatin and emplyment. Key cnclusins and recmmendatins While the current service prvisin in Sufflk is based n age, nt n need, a number f elements are already in place n which further system wide develpment can be based. Fr example, all age multi-agency autism steering grup has been established, which can drive frward strategy develpment and implementatin. It is als essential t develp all age ASD pathways/prvisin, which ffer equal access t services cnsidering the needs f the ppulatin. Hwever, any further service transfrmatin shuld utilise the existing service strengths. Jint-wrking between the health services shuld be imprved, fr example, by increasing shared clinicians time. 3 P a g e
1. Backgrund Assessment, diagnsis and supprt services fr children with autism spectrum disrders (ASD) in Sufflk (excluding Waveney) are cmmissined by the Ipswich and East Sufflk CCG (IESCCG) and West Sufflk CCG (WSCCG). The need t imprve services fr thse with ASD is a majr pririty fr Clinical Cmmissining Grups, Sufflk Cunty Cuncil (SCC) and parents and carers lcally. The drive t imprve the lcal prvisin has been supprted by the recent reviews f all three age specific services (0-11; 11-17 and 18+). As the lcal cmmissiners, IESCCG and WSCCG have recgnised that the current service prvisin in Sufflk (excluding Waveney) fr thse with suspected r diagnsed autism spectrum disrder (ASD) is fragmented. As the different service prvisins have been recently evaluated, the aim f this dcument is t prvide an verview f the current prvisin in Sufflk (excluding Waveney). This summary shuld be read in cnjunctin with these review reprts 1 2. 1.1. Scpe f the paper Recent service reviews have evaluated in detail the current need and service prvisin fr thse with suspected r diagnsed ASD. Therefre, the detailed discussins f needs and the current service prvisins are nt repeated in here. Instead, the purpse f this paper is t present a shrt summary f the verall service need and prvisin in Sufflk (excluding Waveney), and cnsider pssibilities fr age-inclusive service develpment in Sufflk. As part f the discussin n develpment f age inclusive services, cmments frm parents and carers as well as frm prfessinals wrking within the services are cnsidered. In additin, a discussin is included abut pssible service develpment mdels, based n a literature review. 2. Epidemilgy 2.1. Prevalence in Sufflk The estimatins f prevalence f ASD amng children up t the age f 11 range frm 0.5% t 1.6% 1 3. Overall, it is estimated that the prevalence f diagnsed autism is arund 1% 1,2, but increases t 1.6% when children with undiagnsed autism are taken int accunt 2. In the ther wrds, it is estimated that amng children the rati f knwn and unknwn autism cases is 3:2 2, r 40% f all cases remain undiagnsed. Amng adults ver the age f 18 the estimated prevalence f ASD is 1.1% 4. The prevalence f autism is higher amng male (2%) ppulatin than amng female (0.3%) 3. Althugh estimates vary, it is suggested that up t 50% f individuals with ASD have sme additinal learning difficulties 4,5. Hwever, even higher prprtin f autistic individuals (up t 70%) have been estimated t have at least ne, ften unrecgnised, mental health r behaviural disrder. 6 In the Table 1 are presented current ASD prevalence estimatins fr Sufflk (excluding Waveney), based n mid-2014 ppulatin estimates 7. 1 Evaluating needs and health service prvisin fr children and yung peple with autism in Sufflk (Excluding Waveney) - Full reprt f findings and recmmendatins, by wh, date 2 Evaluatin f Adult Autism Diagnstic Service in Sufflk, by wh, date 4 P a g e
Table 1: Prevalence f ASD in Sufflk Ppulatin 7 and estimated number f peple with ASD in Sufflk (Exl. Waveney) Study Ppulatin Prevalence All Ages ASD 0-17 ASD 0-25 ASD 18+ ASD Avn Lngitudinal Study f Parents & Children 3 0.5% 618504 3,161 128594 657 183348 937 489910 2,503 Suth Thames Study 1 1.2% 618504 7,181 128594 1,493 183348 2,129 489910 5,688 UK schl-based ppulatin study 2 1.6% 618504 9,711 128594 2,019 183348 2,879 489910 7,692 The highest estimate fr the ttal number f ASD cases in Sufflk is 9,711, which includes bth diagnsed and undiagnsed cases. Therefre,, grunded n the UK schl-based ppulatin study 2, we can estimate that there culd be nearly 9,711 individuals in Sufflk with ASD, f which 3,900 remain undiagnsed. 3. Current Service Prvisin There are three different age specific services (0-11; 11-17 and 18+) in Sufflk prvided by tw different prviders. The children s ASD service (aged 0-11) is in-bedded within children s cmmunity health services as tw separate ASD pathways. Services fr yung peple aged 11 t 17 and prvisin fr adults aged 18+ are prvided by Nrflk and Sufflk Fundatin Trust (NSFT) as tw stand-alne services. The current prvisin acrss all age grups is shwn in Table 2. 3.1. Referral pathways, service prvisin and funding There is n cmmn access r referral pint t the services. Referrals t the NSFT services g thrugh Access and Assessment Team (AAT), while referrals t the 0-11 ASD pathways are thrugh paediatricians in Sufflk Cmmunity Health (SCH). Althugh n majr issues were fund with the referral pathways, available evidence shwed that there is sme cnfusin amng referrers. Fr example, the SCH referral data fr June 2015 indicates that the service has received a handful f inapprpriate referrals: either wrng age grup r thse registered with a GP ut f catchment area. Referral, diagnsis, and fllw-up pathways are service specific. There is n frmal crdinatin between services r pathways. Service users cannt mve between services, as there are n system wide handver mechanisms. Limited service prvisin fr children aged 11 and ver and adults mean that nly thse with diagnstic needs can access these services There is shrt-term pst diagnstic supprt is available which is difficult t sustain. ASD pathways fr children aged 0-11 prvide cmprehensive package f diagnsis, interventins, and supprt Further, in terms f the funding arrangements, while services fr children and yung peple under the age f 18 are slely funded by health, adults ASD service is c-funded by Sufflk Cunty Cuncil in the frm f a scial wrker input. As cmmissiners have recgnised, the current ASD service prvisin in Sufflk is fragmented, and ffers unequal access t pst-diagnstic supprt. Apart frm the service fragmentatin, the issues f wider supprt within schls and emplyment were raised. Furthermre, there is uncertainty if and hw access t shrt-term supprt during life changes shuld be incrprated in t pathways. 5 P a g e
3.1.1. Referral prcess and trend fr children (0-11) pathways Fr the SCH, the bulk f the referral wrk is ASD related. Fr example, nearly third f the referrals in June 2015 were queries fr a pssible ASD diagnsis. The SCH indicated that this is a fair presentatin f the nrmal referral pattern seen in the service. Althugh nt all referrals querying ASD are accepted t the diagnstic pathways, but nearly tw-thirds f the new referrals received in June 2015 were accepted fr diagnstic assessment. ASD referral data frm the SCH (Children s ASD service review, p.16, table 5) als indicated there has been a year n year increase in referral number fr the ASD pathways. Similar increase in referral numbers was nt bserved fr lder children s (11-17) and adults services, as these services are newly established. The yearly increase in referral numbers fr the children (0-11) service is nt accunted fr by ppulatin increase alne. There is n clear explanatin f why the number f referrals cntinues t increase. Nevertheless, parents and prfessinals stated that access t specialist supprt services, fr example, in educatinal settings tends t be linked t a diagnsis and withut a definitive diagnsis their child may nt be able t access apprpriate services. Therefre, parents are likely t apprach the service fr assessment and diagnsis. In additin, referral increase culd be attributed t raising awareness f ASD as a cnditin. This was reflected in a number f referrals where behaviural difficulties were reprted t be linked t ASD. There were n pathway specific diagnstic utcme data available. Therefre, it was nt pssible t estimate if the number f ASD diagnses has increased in line with the number f referrals. Raising referral numbers, hwever, have increased the pressure n services. The wrklad implicatins f the increasing referrals are difficult t judge. Hwever, it is estimated by the service that each assessment requires arund 10 hurs f paediatrician s time alne. This is nt including the time ther prfessinals within the multi-disciplinary team require fr the assessment prcess. 3.1.2. Referral prcess fr lder children (11-17) and adult (18+) services These tw age specific services are prvided by NSFT and all referrals are prcessed thrugh its Access and Assessment Team. Prfessinals we have spken t flagged up few issues in relatin t screening prcess fr a pssible ASD diagnsis. Fr example, in cmpleted screening but referrals are directed t the services At times n screening is undertaken at all if AAT team feels further ASD screening required by the services. Such cnduct can have negative impact n a timely assessment and diagnsis and creates mre unnecessary queries and prcessing. Therefre, it might be useful fr the AAT and the ASD services t develp an agreed prtcl f hw the ASD specific referrals are prcessed. This shuld include an agreement if any screening infrmatin shuld be cllected by the AAT team r if this is mst apprpriately dne by the ASD service. 6 P a g e
Table 2: Service prvisin in Sufflk fr thse with suspected r diagnsed ASD Age Grup 0-11 11-14 14-17 (up t 25 if in educatin) 18+ Service Service purpse Assessment, diagnsis, shrt- and Assessment and Diagnstic Services Assessment, diagnsis, brief interventin (Pilt Service) lng-term supprt 2 year pilt prgramme Cntract type Funder Blck cntract Health Blck cntract Health Blck cntract Health and Adult Scial Care Cntract End September 2015 April 2016 July 2015 Prvider SCH NSFT NSFT Case Management Psychlgical therapy withut mental health need Tier 2 and 3 mental health Specialist supprt in: Schls Emplyment Parenting supprt Family supprt Hw is service rganised Supprt after diagnsis Supprt utside health services Early Bird Prgramme (children 5) SCH SCH SCH SCH if diagnsed by SCH SCH if diagnsed by SCH up t age f 18 NSFT fr new diagnsis SCH if diagnsed by SCH up t age f 11 SCC: Cunty Inclusive Resurces fr thse with definitive ASD Diagnsis in main stream schls. Children shuld be referred befre the KS4 (i.e. befre the age f 14, sme surces suggest befre the age f 11). There service has abut 12 teachers fr the case lad f arund 800 children. Children stay in the service up t the age f 16. Pst-diagnsis wrk shps (SCH) Lcated within Integrated Paediatric Cmmunity Service fr Sufflk. There is n specific autism service but pathways fr pre-schl children 0-4 and schl age 5-11. Case management and tailred interventins. NSFT fr new diagnses Nne NSFT when diagnsed mental health need in additin t autism Primary Mental Health Wrkers (PMHW) NSFT fr new diagnsis Nne SCC: Sufflk Emplyment Service (Shaw Trust) is accessible fr peple aged 18 and ver wh live in Sufflk and have mental health prblems, learning disabilities, and/r Autism. Cntracted ut t Sufflk Family Carers, nt part f the autism services. Prvides family supprt / parenting prgrammes fr unpaid carers (frm age f 13) f autistic children and yung persns Thse children diagnsed by SCH stay within SCH caselad New assessments requests g t NSFT. Case management and tailred interventins if diagnsed by SCH All new referrals are assessed by NSFT Shrt-term supprt (up t 3 mnths) t facilitate understanding f diagnsis. Direct transfer t ther services e.g. mental health pssible if needed. All new referrals are assessed by NSFT Supprted t access mental health services and ther health and scial care services e.g. Autism Sufflk (5 t 14) e.g. Autism Anglia e.g. Autism Anglia 7 P a g e
4. Service design and strategy Althugh evidence can be fund n effective interventins fr thse diagnsed with ASD 8, there is little research evidence f effective service delivery mdels. Instead, a number f reprts and strategy papers, bth natinally 9 and internatinally 10, can be fund. Only ne research paper was lcated that described an interagency service delivery mdel fr ASD and ADHD 11. The trialled mdel was fr children s (0-18) service delivery in the Isle f Wight. Initially, the mdel was used t deliver multi-agency diagnstic prcess fr thse with suspected ASD and deliver c-rdinated interventins at schls, within families and in the cmmunity. 11 4.1. Effective ASD service design The service delivery mdel in the Isle f Wight was develped against the backgrund f lng waiting times fr diagnsis (2 years) and fragmented service prvisin. The cre prject team included a psychlgist as a clinical lead, wrking alngside a cnsultant paediatrician, and a dedicated administrative c-rdinatr. As the results f the prject, waiting times fr diagnsis were reduced t 6 mnths, and access t services became c-rdinated. The key elements f the service are shwn in table 3. The mdel was cmpared t hw services fr children are rganised in East and West Sufflk. Encuragingly, the cmparisn indicated a number f similarities with the successful service delivery as described in the paper. Table 3: Cmparing the Isle f Wight mdel t the current service deliver in East and West Sufflk A single referral pint The Isle f Wight Mdel 11 A cmprehensive infrmatin gathering system f all areas f a child s life Infrmatin gathered befre mnthly multiagency meetings Birth 4 year Schl-aged children A multi-agency based diagnsis linked t a plan f management Supprted by infrmatin and training fr: Parents Schl C-rdinated supprt fr families C-rdinated interventins between hme and schl East and West Sufflk children 0-11 and 11-17 services Bth services perate in practice, even if nt in name, a single pint access system t their wn services. There is, hwever, n central single pint access fr all ASD referrals but services have their wn single access pints. Bth services have in place a cmprehensive infrmatin gathering system with multidisciplinary diagnstic prcesses. The SCH ASD pathways fr under 11 year lds ffer care planning and supprt fr parents Due t current cmmissining arrangements, very limited amunt f pst-diagnstic supprt is available fr thse ver the age f 11. The ASD pathways fr under 11 year lds ffer supprt fr parents. Due t current cmmissining arrangements, limited amunt f pst-diagnstic supprt is available fr thse ver the age f 11. Currently n frmal supprt arrangements with schls The areas where the current services in Sufflk diverge frm the mdel trialled in the Isle f Wight are a true single pint access and c-rdinated supprt and interventins fr bth families and schls. Due t lack f evidence, it is nt pssible t evaluate whether similar mdel wuld be effective in delivering services fr thse ver the age f 18. Hwever, it culd be argued that 8 P a g e
principles f single access pint, multidisciplinary wrking, and pst-pst diagnsis c-rdinated interventins are equally relevant fr delivering services fr adults. Unlike fr children, whse supprt needs tend t centre n hme and at schl, adults supprt needs tend t relate mre t gaining meaningful emplyment r ccupatin, and independent living. 4.2. Strategy develpment arund the United Kingdm As discussed abve, a number f strategy papers were lcated UK-wide that described develpment f strategies fr all-age r age inclusive ASD services. The Strategy papers recgnised that each individual diagnsed with the ASD has their wn specific needs, sme needing supprt thrughut their lives while thers lead independent lives. Therefre, the strategy develpment arund the UK appeared t emphasise the need fr jint wrking between agencies t ensure that there is an equal, needs-based access t services fr all age grups. The emphasis n jint wrking was evident in that the all-age ASD strategy papers were either authred r endrsed by bth lcal Clinical Cmmissining Grups and Cuncils. 12 15 Key develpment area in achieving all-age ASD services was cmmnly identified as imprved acrss agency wrking, such as thrugh strnger and mre cllabrative netwrks. Anther theme underpinning the strategies was the felt urgency t develp innvative service mdels, based n lcal pririties. 12 15 The all-age ASD strategies cmmnly emphasised the fllwing themes: Access t services and supprt Develpment f clear and cnsistent pathways Clear service ffer fr thse requiring interventins and supprt Transitins arrangements between services Transitins acrss life events Educatin, learning, and emplyment Cmmunity Life Scial Inclusin, husing supprt, and keeping safe Supprt fr carers and families. 12 15 As the supprt needs change ver a life curse, strategy develpment, and mrever implementatin, requires multi-agency input. Therefre, a number f lcalities have established a multi-agency ASD steering grup r bard, which is tasked with the respnsibility fr develping and implementing all-age ASD pathways acrss different services. 12 15 This apprach is als emphasised by the NICE guidance which recmmends that: Each lcal area shuld have an autism multi-agency strategy grup and an identified key prfessinal respnsible fr the autism pathway/s in each area. 16,17 Althugh Sufflk has a multi-agency autism steering grup fr all age ppulatin, there is n single identified persn respnsible fr autism pathways. Develpment and implementatin f an all-age ASD strategy invlves bth building pathways acrss services and multi-agency wrking. It is nt inferred, hwever, that all-age services shuld be ffered by a single prvider. Indeed, it is questinable if a single prvider wuld be able t ffer the variety f services and supprt required during the different stages f life. Cnsequently, develpment f an age inclusive strategy and services, even within health cntext alne, is likely t invlve mre than ne service prvider. This, hwever, requires that there are clear ASD specific pathways and handver arrangements acrss services. 9 P a g e
5. Service rganisatin parents and carers view A fcus grup f parents f children with ASD were interviewed fr their experiences. Additinal service user and carer feedback was received frm Educatinal Psychlgy service and Sufflk Family Carers. The purpse f this exercise was t explre experiences and wishes f parents and carers with a family member with ASD in terms f access t services, its prcess and rganisatin. 5.1. Children and yung peple There was a strng feeling abut services nt being rganised arund the needs f thse with ASD. Principally, services were perceived lacking in cnsistency and jint wrking. A number f cmments related t experiences f being passed arund the system, withut clarity wh shuld wn a prblem. Struggling t cpe with dual diagnses, such as mental health difficulties, was cmmn. Access t mental health services, hwever, divided pinin. Nt unexpectedly, numerus cmments related t difficulties children experienced in schls and during schl transitins. It was felt that there was nt enugh supprt available in schls t enable smth transitins. Sme parents felt that transitins between schls culd be imprved by having CAF/TAC arrangements in place. Having access t CAF/TAC was, hwever, described as difficult. Parents als wished t see better access t schls specialising in children with ASD. 5.2. Yung adults and adults Number f parents and carers als expressed their frustratin in lack f supprt fr ver 18s, Once children leaving frmal educatin, there is n adequate supprt r guidance available. Sme cmments als related t difficulties in accessing specialist emplyment training due t high threshld. Hwever, specialist emplyment training was nt felt t be always the answer. Rather, they wished t have prper emplyment services respnsive t individual s specific skills tgether with drp-in places that culd imprve access the cmmunity and imprve life skills. 5.3. Parent and carers feedback summary Based n the parent and carer feedback, it appears that, ideally, thse with ASD wuld need: Clear pathways fr accessing interventins and supprt Effective jint wrking between prfessinals invlved in care and management Access t key-wrker fr crdinating supprt Cnsistent infrmatin and advice frm different parts f the system Supprt utside the health system Schls Emplyment Supprt in cmmunity. 6. Service Prvider Feedback During the service review a number f discussins were held with the service prvider staff, bth in clinical and nn-clinical rles. The discussins were mainly held with prfessinals wrking in under 18s services. Prfessinals were asked abut their views regarding a develpment f age inclusive services. There was a clear cnsensus that access t services shuld be based n need, nt n age. Hwever, prfessinals emphasised that as different age grups have their specific needs, services require sme frm f specialisatin. The fllwing cnsideratins were raised: Prfessinal specialisatin and special interests 10 P a g e
Specialist skills and training required t wrk with different age grups Physical and mental health needs Children diagnsed with ASD appear t require mre ften paediatricians input fr physical c-mrbidities than thse diagnsed in yuth r adulthd. Yung peple and adults diagnsed with ASD appear t have their principal needs arund relatinships, scial behaviurs, and mental health. Age specific needs Child care, schl, educatin, emplyment, independent living. Envirnment Service envirnment e.g. child / teenage / adult friendly Scial envirnment e.g. living with parents / living with family. Feedback highlighted the perceptin that while age inclusive pathways needs t be develped; this is likely t invlve a number f services acrss health, educatin, scial care, and emplyment. Prfessinals als felt that better defined pathways wuld help in management f expectatins frm the services. Prviding service users with clear guidance f what services can be accessed and hw, wuld ensure better understanding f which services are time limited and which can be accessed when needed. 7. Service specificatins During the discussins between the CCG cmmissiners and the service prviders it became apparent that there was a lack f cnsensus n hw the service prviders and the CCG cmmissiners viewed the service specificatins and mnitring requirements. Service prviders view f the service specificatins was mixed. Bth service prviders felt that service specificatins shuld be imprved. Especially the service fr the children aged 0 t 11 felt that the service specificatin did nt describe the current service prvisin accurately. Fr example, there is uncertainty regarding the target age grup fr the service. The Service specificatin fr the lder children (11-17) was clearly based n the adult service specificatin. While the service specificatins fr adults and lder children (11-17) were felt t be describing the actual services, cncerns were raised regarding the vagueness f sme KPIs that are beynd the timeframe f the diagnstic service. 7.1. Main issues with the service specificatins Extensive analysis f the service specificatins was undertaken 3 4 and key issues are nted belw: The service, r rather pathway specificatin, fr 0-11 wuld benefit frm imprved clarity and clear pathway specific utcmes and KPIs. The service specificatin fr the 11 t 17 year lds was cmprehensive and described in detail thse utcmes the service shuld achieve. Hwever, a number f the utcmes were system wide and related t wider mdels f care, which were utside the direct influence f the service. The data reprting requirement fr the adult service evlved during the cntract perid, and it has becme clearer what data is attainable. Due t the amendments the data reprting 3 Evaluating needs and health service prvisin fr children and yung peple with autism in Sufflk (Excluding Waveney) - Full reprt f findings and recmmendatins - Sectin 4.1.1. Service specificatins, p.15. 4 Evaluatin f Adult Autism Diagnstic Service in Sufflk Gvernance, sectin 4.2.25., p.12. 11 P a g e
requirements shuld be clsely mnitred. It shuld be ensured that data reprting requirements are agreed between the CCGs and NSFT if this service t be cntinued in the future. 8. Service gaps and areas fr develpment acrss services Reviews identified a number f gaps and develpment areas in each service. The service gaps and develpment areas were recgnised by the services themselves. Althugh develpment wrk was n-ging in the services, this was partially dependent n available resurces and hw the services were cmmissined. The key areas fr imprvement and gaps acrss the services are detailed in belw. 8.1. Identified Gaps Lack f pst-diagnstic services fr children ver the age f 11 and adults Lack f clear pathways hw care and supprt services can be accessed utside the ASD services fr children aged 0-11. This includes; Mental health services Supprt fr schl, educatin, and emplyment Scial services Third sectr rganisatins Supprt fr carers. 8.1.1. Cmpliance with NICE guidance fr children s services Sufflk has a multi-agency autism steering grup, but n single identified persn respnsible fr autism pathway. Bth services have multidisciplinary assessment and diagnstic pathway/s, but n direct access t a child / adlescent psychiatrist. Access t scial care services is described difficult. Services fr children and yung persns (11-17) ffer nly diagnstic service and shrtterm supprt. 8.1.2 Training needs Prfessinals in the adult services felt that they wuld need further training in management f dual diagnses. 8.2. Key areas fr develpment 8.2.1. Service key utcmes Perfrmance utcmes wuld benefit frm better alignment with the services purpse. Currently a number f service utcmes are nt specific enugh fr the actual service r pathway, but describe system wide utcmes. 8.2. 2. Key service indicatrs (KPI s) Cmmissiners and service prviders shuld ensure that KPIs are bth defined and measurable targets. The key perfrmance indicatrs can be either a quantitative measure r qualitative measure r cmbinatin f bth using reprtable statistics and patient satisfactin reprting. 12 P a g e
Cnsideratin shuld be als given if pathway specific key perfrmance indicatrs can be agreed. 8.2. 3. Perfrmance data reprting Current perfrmance data reprting systems are nt specific enugh t capture individual patient jurney thrugh the service accurately. Lack f data hinders frming a cmmn understanding between the service prviders and cmmissiners abut the pressures facing the services. 9. Discussin This paper aimed t describe the current ASD prvisin in Sufflk and bring tgether systematic assessment f evidence and infrmatin t infrm develpment f age-inclusive prvisin fr thse with suspected r diagnsed ASD. The current service prvisin in Sufflk is mst cmprehensive fr thse under the age f 11. Services fr children and yung peple ver the age f 11 and adults are currently cmmissined t deliver diagnstic services and shrt-term pst-diagnstic supprt. This had led t a situatin where access t services and supprt is based n age, nt n need. Furthermre, current cmmissining arrangements als d nt supprt inter-agency wrking. Hwever, the lcal cmmissiners are well aware f the current service fragmentatin and imprtance f equal service prvisin. A literature search was cnducted t search fr any relevant evidence abut effective service mdels. The result f the literature review was limited, s that nly ne paper was identified that evaluated a service delivery mdel fr children and yung peple. Similar evidence was nt fund fr adult services. The service mdel in questin was trialled in Isle f Wight, and was successful in reducing waiting times and crdinatin f available services. 11 The key elements fr imprved service rganisatin included: A single pint f referral fr diagnsis A cmprehensive infrmatin gathering system, incrprating all areas f life A multi-agency based diagnsis linked t a plan f management C-rdinated supprt fr families C-rdinated interventin between hme and schl. 11 The mdel was cmpared t hw services fr children are currently rganised in East and West Sufflk. Althugh the cmparisn indicated a number f similarities with the current service delivery mdel in Sufflk, areas such as cnsistent service ffer acrss age grups and partnership wrking with schls and parents were lacking. Furthermre, while each service had a single pint access, this was a service specific access, nt system wide single pint access. While any cmparisn with the adult services shuld be apprached with cautin, principles f single access pint, cmprehensible infrmatin gathering, and multi-agency wrking with c-rdinated supprt culd be argued t be principles fr an effective service mdel. Althugh very limited evidence was fund n different service delivery mdels, numerus examples f an all-age ASD strategy develpment were identified arund the UK. The published strategy 13 P a g e
dcuments fr the all-age ASD services indicated that a develpment, let alne implementatin, f an all-age ASD strategy are dependent n: Strng lcal leadership fr the develpment f ASD strategy and services Multi-agency ASD strategy and implementatin grup Develpment f clear and cnsistent pathways Defined service ffer fr thse requiring interventins and supprt Transitin arrangements between services Transitins acrss life events. 12 15 Similarly t the strategy dcuments, parents and carers feedback highlighted the perceived need fr better jint wrking between prfessinal and clear pathways t access supprt and interventins. A number f cncerns related t accessing supprt utside health services, such as in schls and emplyment. As ASD is a life-lng cnditin, the all-age ASD strategies discussed in this dcument recgnised that there is a need fr a multi-agency wrking t prvide the services that thse with ASD may need acrss their life span. The need fr clear pathways and multi-agency wrking is als seen by the service prviders as a key in designing services that are needs-based. Hwever, within health services, develpment f all-age ASD services may be hindered by the current funding arrangements. While the services fr under 18s are health funded, adult services are c-funded by health and adult scial care. 10. Cnclusins There is a grwing cnsensus that delivering all-age ASD services requires multi-agency wrking, where service prvisin is based n need, nt n age r any ther arbitrary service threshld. Parents and carers, perhaps understandably, tend t feel that the current service prvisin is limited and nt needs based. A service based n needs, hwever, des nt mean unrestrained access t services. On the cntrary, the available evidence indicates that interventins based n a plan f care appear t be an effective way f delivering the required supprt. After discharge, need fr services can be re-evaluated, fr example, when circumstances change. This, thugh, requires that care pathways are planned t enable shrt-term return t services when needed. Arund the UK a number f lcalities have started t develp and implement all-age ASD strategies. Issues relating t service access and transitins are cmmnly cnsidered in strategy wrk. Given that the emphasis n the strategy wrk is n develping pathways that encmpass a number f services and prviders, there appears t be an emerging cnsensus that all-age ASD services are unlikely t be prvided by a single rganisatin. Furthermre, while there is a need fr specialist ASD services, available evidence des nt argue that all services must be delivered nly by prviders with specialist interest in ASD. Althugh the current service prvisin in Sufflk is based n age, nt n need, a number f elements are already in place n which further system wide develpment can be based. A multi-agency autism steering grup has been established in Sufflk, which wuld be ptentially well-placed t drive frward strategy wrk and later implementatin. The current service prvisin is, within their cmmissined limits, meeting the majrity NICE 6 recmmendatins. Services have als in place a number f systems, such as multi-agency wrking, that are assciated with effective service delivery. As the services are cmmissined presently, the areas that require the mst develpment are children ver the age f 11 and adults pst-diagnstic supprt services. Services fr yunger 14 P a g e
children, n the ther hand, highlighted the need fr rbust care planning and develping better links with mental health services. 11. Recmmendatins There is a limited empirical evidence f effective ASD service mdels. Hwever, lcal services have develped a number f prcesses that can be assciated with an effective service delivery. Therefre, any further service transfrmatin shuld utilise the existing service strengths. Cmmissiners shuld cnsider hw all-age ASD services are defined in the lcal cntext and funding implicatins: Health services nly Whle system apprach (health, educatin, emplyment, scial care). Cmmissiners shuld clarify: If and hw the strategy wrk by the Sufflk ASD steering grup links with the CCGs cmmissining aims. Whether there is a need fr the CCG cmmissiners t strengthen participatin in the Sufflk wide ASD strategy wrk r develp their wn all-age service strategy. Develp age inclusive ASD pathway(s) as per NICE guidance. Pathways d nt need t be prvided by a single service, but shuld ffer equal access t services. Jint-wrking between the health services shuld be imprved. This may include increasing shared clinician s time, and imprving access t mental health advice withut the prerequisite f making a frmal referral. 15 P a g e
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