NHS Nrth Nrflk, NHS Suth Nrflk and NHS Nrwich Clinical Cmmissining Grups Dementia Strategy and Actin Plan: 2018 t 2020 1. Intrductin This strategy sets ut prgress that NHS Nrth Nrflk Clinical Cmmissining Grup, NHS Suth Nrflk Clinical Cmmissining Grup and Nrwich Clinical Cmmissin Grup (cllectively knwn as the central Nrflk CCGs) will take with partners and services t imprve dementia diagnsis rates, services, access t services and utcmes fr peple living with dementia and their carers. The strategy and actin plan have been develped t supprt prgress against natinal, cunty and CCG level pririties. It frms a cre wrk stream fr each CCG and als the Nrflk and Waveney Sustainability and Transfrmatin Partnership (STP) i, with the aim f ensuring that actins and develpments are taken frward within a wider visin f integrated care and services. The central Nrflk CCGs believe that implementing this strategy will: Imprve peple s experience f living with dementia and imprve the services they receive. Imprve the experiences f families and carers f peple living with dementia and the services they can access. Increase levels f awareness and understanding f dementia amngst the public and service prviders, helping t reduce the stigma assciated with dementia. Ensure a higher prprtin f peple receive a timely dementia diagnsis and quickly access apprpriate pst diagnstic supprt. 2. Natinal Cntext In 2009 Living Well with Dementia - a Natinal Dementia Strategy ii was issued. This set ut new standards fr dementia care fcusing n imprved awareness, earlier diagnsis and interventin and a higher quality f care. In 2010 the Quality Outcmes iii fr peple with dementia were published, these built n the wrk f the natinal strategy and dementia NICE guidance iv. The Strategy s ambitins were reinfrced in 2012 by the launch f the The Dementia Challenge: respnding t a Natinal Pririty v which prvided a fcus n speeding up the raising f diagnsis rates and imprving the skills and awareness needed t supprt peple living with dementia and their carers. Gegraphical perfrmance in the identificatin and management f Dementia acrss England was highlighted in the 2013 Dementia: A state f the natin reprt n dementia care and supprt in England vi which als prmted the develpment f Dementia Friendly cmmunities. Mre recently in February 2015 the Department f Health (DH) issued the Prime Ministers Challenge n Dementia 2020 which includes the Well Pathway: 1
Preventing Well Diagnsing Well Supprting well Living Well Dying Well The risk f peple develping dementia is minimised Peple receive a timely and accurate diagnsis, care plan and review within the first year Peple living with dementia and their carers have access t safe, high quality health and scial care Peple living with dementia can live nrmally in safe and accepting cmmunities Peple living with dementia die with dignity in the place f their chsing With the key bjective that by 2020 England will be the the best cuntry in the wrld fr dementia care and supprt fr peple with dementia, their careers and families t live vii. Thrughut this the imprtance f ensuring that peple with dementia and their carers are at the heart f everything that is taken frward t realise this visin is critical. The visin s main bjectives include: Imprved public awareness and understanding f the factrs, which increase the risk f develping dementia and hw peple can reduce their risk by living mre healthily. Peple with dementia having equal access t diagnsis, with an expectatin that the natinal average fr an initial assessment shuld be 6 weeks fllwing a referral frm a GP (where clinically apprpriate). Every persn diagnsed with dementia having meaningful care fllwing their diagnsis, which supprts them and thse arund them. All NHS staff having received training n dementia apprpriate t their rle. An additinal 3 millin Dementia Friends in England. All hspitals and care hmes meeting agreed criteria t becming a dementia friendly health and care setting. GPs playing a leading rle in ensuring crdinatin and cntinuity f care fr peple with dementia. Frm 1 April 2015 everyne will have access t a named GP with verall respnsibility and versight fr their care. Over half f peple living in areas that have been recgnised as Dementia Friendly Cmmunities In additin, NHS Operatinal Planning and Cntracting Guidance fr 2017-19 states that CCGs must: Maintain a dementia diagnsis rate f at least tw thirds f estimated lcal prevalence, and have due regard t the frthcming NHS implementatin guidance n dementia fcusing n pst-diagnstic care and supprt. Increase the numbers f peple receiving a dementia diagnsis within six weeks f a GP referral 2
3. Nrflk Picture Dementia was ne f the three pririties within the Nrflk Health and Wellbeing Bard 2014 2017 strategy. The strategy aimed t make Nrflk a better place fr peple with dementia and their carers. The bjectives cntained within this pririty were t: 1. Prmte awareness f dementia and imprve diagnsis rates 2. Build an integrated apprach t dementia 3. Understand the cmpnents f managed dementia care in Nrflk and identify gaps in prvisin 4. Prmte independent living in the cmmunity 5. Imprve services fr thse unable t live independently The strategy highlighted hw: The prevalence f dementia is rising bth natinally and in Nrflk. Dementia is principally a disease f lder peple and Nrflk has a higher prprtin f peple ver 65 than the England average. It is estimated that nearly tw thirds f peple with dementia in Nrflk have nt had a frmal diagnsis f their cnditin and that ver the next ten years the number f peple with dementia will increase by abut 5,000. viii The strategy was built upn the findings f a Nrflk Dementia needs assessment ix. The assessment highlighted the fllwing: There are abut 26 new cases f dementia per year per 1000 ppulatin f ver 65s in Nrflk (diagnsed r undiagnsed). Just ver half f peple with dementia have mild dementia and the remaining have mderate r severe. Peple with dementia find it difficult t feel part f, and participate in, their cmmunity in Nrflk. Peple identified several attributes they wanted frm their cmmunity which included awareness, supprt grups, clearer infrmatin, and supprtive physical envirnment, activities at the right level, gd transprt and lcal amenities. Feedback frm peple with dementia and their carers indicated that peple want t knw their diagnsis. There needs t be a step change in the diagnsis rate if the natinal NHS England target f 67% is reached. Peple felt that the quality f services prvided within Nrflk is gd but that there remain capacity issues. Abut 1 in 3 t 1in 5 peple in hspital have dementia. There is a reluctance acrss sme GPs t refer fr diagnsis, because they see little pint diagnsing dementia as they perceive that there are n r limited services t supprt peple with dementia and their carers after diagnsis. The assessment recmmendatins included the fllwing: CCGs shuld ensure GPs are aware f available supprt fr peple with dementia and their carers. Cmmissiners and prviders shuld wrk tgether t help mre peple with dementia die in their place f chice. 3
Health and scial care shuld jintly cmmissin dementia supprt services. Dementia friendly cmmunities shuld extend t nn-gegraphical cmmunities. CCGs shuld assist GP practices t standardise dementia cding and undertake cding audits. Prviders, especially acute hspitals, cmmunity healthcare, care hmes and dmiciliary care rganisatins, shuld include essential dementia skills and knwledge in their jb descriptins when recruiting staff and use dementia caches fr wrkfrce develpment. Cmmissiners and prviders shuld wrk tgether t develp jint referral pathways and where apprpriate agree tls. Learning Disability Nrflk has an estimated 22,000 peple living with a learning disability. Fr many f these, symptms will be mild and they will nt be receiving care r supprt frm mainstream scial care/day services. The 3 Central Nrflk CCGs have cmbined respnsibility fr 68 GP practices, with a cmbined list size f 637,336. Of this 4321 (2.06%) are recrded as having a mderate t severe learning disability as part f practice QF returns (NHS Digital 2016/17 Qf Data http://digital.nhs.uk/catalgue/pub30124). Peple living with mderate t severe learning disability are at a higher risk f develping early nset dementia. 30% f peple 50 r ver with a diagnsis f Dwns Syndrme will have develped Alzheimer s 50% r mre f peple with Dwns Syndrme will develp Alzheimer s as they age. 1 in every 10 peple with a learning disability (nt Dwns Syndrme) between the ages f 50 and 65 have already develped Alzheimer s 4. Central Nrflk Dementia Strategy 4.1 Dementia Rates The Nrflk dementia needs assessment estimated that in 2015 there wuld be 3792 peple with dementia in the Suth Nrflk CCG area, 4223 in the Nrth Nrflk CCG area and 3942 in the Nrwich CCG area. This is set t increase year n year. 4
Estimated peple with dementia 6000 5000 4000 3000 2000 1000 0 2013 2014 2015 2016 2017 2018 2019 Axis Title Nrth Nrflk Suth Nrflk Nrwich NHSE s natinal ambitin is that tw-thirds f peple with dementia are identified and given apprpriate supprt. CCGs have been wrking with GPs and services t increase dementia diagnsis rates. The latest data available (Octber 2017) via NHS England QOF reprting shwed that diagnsis rates fr 65 years plus are: 63.7% fr SNCCG 60.8% fr NNCCG 60.7% fr NCCG (this excludes Bwthrpe Care Village data which increases rate t 63.83%) 5
Dementia Diagnsis Rate (65+) 68 66 64 62 60 58 56 54 52 50 Standard (66.7%) Nrth Nrflk Suth Nrflk Nrwich Surce: NHS Digital Recrded Dementia Diagnses 4.2 Stratificatin The central Nrflk CCGs are taking a stratified apprach adding lcal utcmes t the wider STP bjectives. Tier 1 level relates t thse wh require general infrmatin and advice and have a lw level need that can be met withut nging interventin by either a wellbeing crdinatr/supprt wrker r dementia adviser. Tier 2 relates t the prvisin f nging supprt t families wh have a lnger term, lwer level need that can be met by a wellbeing crdinatr/supprt wrker. Tier 3 wuld be prvided by Admiral Nurses wh are able t ffer specialist supprt and knwledge fr cases that have an intensive level f need and cmplexity that cannt be prvided by unqualified members f staff. 6
4.3 Implementatin Plans The verarching bjective within the central Nrflk CCGs Dementia Strategy is t ensure: There is gd infrmatin, advice and supprt services fr peple living with dementia and fr their carers and families s that peple living in central Nrflk are mre cnfident that they can live well and independently with dementia and get access t apprpriate services when required. Each imprvement plan addresses the questins psed by the NHS England Checklist - Key Lines f Enquiry fr Dementia. The central Nrflk CCGs all have imprvement Plans based arund the 5 Pillars Mdel which prvides a framewrk fr peple living with dementia, their families and carers with the tls, cnnectins, resurces and plans t allw them t live as well as pssible with dementia and prepare fr the future. 7
Supprting Cmmunity Cnnectins - Supprt t maintain and develp scial netwrks. Peer Supprt - Frm ther peple with dementia, their families and carers t help cme t terms with ill and maintain wellbeing and resilience. Planning fr Future Care - Supprt, when they are ready, t plan the shape f their future care frm their wn perspective tgether with thse arund them, develping a persnal plan with their chices, hpes and aspiratins which can guide prfessinals. Understanding the Illness and Managing the Symptms - Supprt t cme t terms with dementia and learn abut self-management f the cnditin. Planning fr Future Decisin Making - Supprt t set up pwers f attrney and ther legal issues. The central Nrflk CCGs plans cntain the detailed delivery prpsals and milestnes and will prvide the fcus fr delivery f this strategy becming the fcal dcument fr discussin at the central dementia prgramme bard meetings. 4.4 Pririties NHSE s natinal ambitin is that tw-thirds f peple with dementia are identified and given apprpriate supprt. Further, it is a natinal pririty t increase numbers accessing treatment, fllwing diagnsis, within 6 weeks by 5%. In additin there is a natinal drive t ffer diagnsis and subsequent supprt in primary and cmmunity care settings. This eases access fr patients, their families and carers, bringing their care clser t hme, ffering a hlistic apprach t care. The central Nrflk CCGs are fully cgnisant f these ambitins which infrm the key pririties ging frward. The key pririties acrss all three 3 CCG plans are as fllws: 8
Pririty 1 Imprving Access t diagnsis Fcus n wrking with primary care prfessinals t enable imprved and increased screening and diagnsis f dementia within primary care. Sme f the ways this will be enabled are as fllws: Learning sessins fr GPs, Nurses and HCAs Prmtin f screening and diagnsis tls fr use by all within the GP surgery Prmtin f crrect cding fr patients diagnsed with dementia Supprt frm clinicians with an interest in dementia t desktp review GP systems fr un-cded r incrrectly cded patients with dementia Supprt frm clinicians with an interest in dementia t review GP systems fr patients wh may benefit frm an assessment fr diagnsis f dementia Fcus n wrking with care hmes t enable imprved and increased screening and diagnsis f dementia within primary care. Sme f the ways this will be enabled are as fllws: Awareness raising and training fr care hme staff Implementing the Diagnsis f Advanced Dementia in Care Hmes tl (DiADEM) fr use by practices with registered patients whse place f usual residence is a care hme Supprt frm clinicians with an interest in dementia t review care hme data fr patients wh may benefit frm an assessment fr diagnsis f dementia Memry Assessment Services In partnership with CCGs acrss the wider STP ftprint f Nrflk and Waveney, the central Nrflk CCGs are keen t explre pprtunities t mve memry assessment services as fully as pssible int primary and cmmunity care. It is expected that in the future nly cmplex diagnsis shuld be undertaken by secndary services. Central Nrflk CCGs will wrk alngside lcal CCG clleagues, the lcal mental health services and primary care t identify apprpriate mdels f care t allw the shift f assessment services ut f secndary care. This wrk will likely invlve the pilting f sme memry assessment mdels in primary care, t test ptins with a view t a wider rll ut acrss the STP ftprint whilst allwing fr lcal variatin in each CCG area. This wrk will take place ver 2018/19 and int 2019/20. Learning Disability In line with the NICE Guidance (under review and currently ut fr cnsultatin), https://www.nice.rg.uk/guidance/indevelpment/gid-scwave0776/cnsultatin/html-cntent it is the aim f the central Nrflk Dementia Prgramme Bard t:- Wrk with prviders t ensure equity f access t screening fr peple with LD Wrk with GP Practices t ensure that peple with learning disabilities have access t an annual health check Increase access t assessment / diagnsis and treatment fr dementia by peple with learning disabilities Wrk with prviders t ensure that reasnable adjustments are made t referral and assessment pathways fr peple with learning disabilities Wrk with clleagues in Adult Scial Care t ensure that peple with learning disabilities have a regular assessment f their care needs Pririty 2: Access t Infrmatin and Supprt 9
T ensure the prvisin f, and easy access t, gd infrmatin and a range f services fr peple living with dementia and their carers and families pst-diagnsis. This includes: Infrmatin and advice services Signpsting services Access t dementia supprt wrkers Access t admiral nurses Integrated prvisin f services with scial care such as dementia day care centres Admiral Nurses Admiral nurses wrk with families and carers f peple living with dementia and prfessinals, in the cmmunity and ther settings. Admiral nurses seek t imprve the quality f life fr peple with dementia and their carers and families. They use a range f bi-psychscial interventins that help peple with dementia and their families t live well with the cnditin and develp skills t imprve cmmunicatin and maintain relatinships. The Admiral nurses ffer specialist supprt and educatin t ther prfessinals wrking with families and peple with dementia. With respect t admiral nurses, the central Nrflk CCGs are delivering a tw year pilt admiral nursing service, cmmencing Nvember 2017. Within Nrwich CCG the admiral nurses will be supprted by dementia supprt wrkers. The service is available frm peri-diagnsis t pst bereavement and is pen t referrals frm primary care. The service will be subject t an independent evaluatin thrughut 2018/19. Pririty 3 Dementia Friendly Practices In partnership with vluntary sectr rganizatins, in particular the Alzheimer s Sciety, wrk with primary care t imprve the experience f patients living with dementia when attending their GP practice including: Increasing dementia awareness and understanding fr all practice staff adaptins t sme aspects the physical envirnment such as dementia friendly signage availability f up t date and relevant infrmatin effective cmmunicatins between the patient and the surgery Dementia Friendly Practices General practice ften acts as a gatekeeper fr key aspects f care fr peple with dementia. Fr many it is the GP practice that pens the dr t infrmatin, supprt and planning; GPs ften prvide the infrmatin and signpsting needed t access supprt; and GPs hld respnsibility fr care plans and reviews fr nging management. Peple with dementia can struggle with remembering t attend appintments, navigating the physical envirnment f the practice, expressing their cncerns in the shrt time available with the GP, and recalling details f discussins regarding their care. It is therefre ever mre imprtant that the systems and prcesses f general practice are geared up t supprt peple with dementia. Pririty 4 Access t Educatin and Training 10
T ensure that there are educatin and training pprtunities available t the health and care sectr and t cmmunity and vluntary services t supprt cmmunities t care and supprt thse peple living with dementia and their carers and families. Pririty 5 Cmmunicatins and Engagement T ensure that clear cmmunicatin and pprtunity fr public engagement and cprductin are at the centre f ur dementia strategy delivery plans Pririty 6: Strategy Management T frm a Central Nrflk Dementia Prgramme Bard t versee the delivery f the pririties f this strategy dcument. Membership f this grup will include representatin frm cmmissining, prviders f health and scial care and the vluntary/cmmunity sectrs 4.5 Partnership Wrking The central Nrflk CCGs will wrk with partner rganisatins t deliver their plans, in particular with: GP Practices Dementia UK Age UK Alzheimer s Sciety Nrflk and Sufflk Mental Health Care Trust Nrwich Cmmunity Health and Care Nrflk and Nrwich Hspital Scial Care 5. Reprting and Gvernance Prgress against strategy bjectives and each CCG s actin plan will be verseen n a mnthly basis by the Central Nrflk Dementia Prgramme Bard. Each CCG will be respnsible fr reprting prgress t their respective prgramme Bards, Gverning Bdies and Clinical Executive Teams. The central Nrflk CCGs will reprt cllectively t NHSE via the Enhanced Fcus Dementia meetings. The strategy will be reviewed in Q4 f 2017 and where needed refreshed. The actin plans fr 2018 will be develped fr implementatin in the 2018/19 year. Central Nrflk CCG members will be kept up t date n strategy implementatin via updates within the Members Newsletter. Members f the public will be infrmed thrugh nging cmmunicatins including via the CCGs websites, invlvement in Patient and Participatin Grups and where apprpriate thrugh c-prductin. 11
Leadership fr the strategy implementatin will be supprted within each CCG by a Clinical Lead, wh will champin the wrk being taken frward and prvide clinical advice and gvernance. 12
i Nrflk and Waveney STP Plan ii Living Well with Dementia - a Natinal Dementia Strategy 2009 iii Nice Quality Outcmes 2010 QS30, QS1 iv NICE Dementia Clinical Guidance CG42 v Prime Minister s 2020 Challenge n Dementia vi Dementia: A state f the natin reprt n dementia care and supprt in England 2013 vii Nrflk Health and Wellbeing Bard 2014 2017 strategy viii Jint Health and Wellbeing Strategy 2014-2017. A reprt t the Nrflk Health and Wellbeing Bard. May 2016. ix Living in Nrflk with Dementia: A Health and Wellbeing Needs Assessment. July 2014. Nrflk Cunty Cuncil Public Health wwww.nrflk.gv.uk 13