The National End of Life Care Intelligence Network (NEoLCIN): report of the first year


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The National End of Life Care Intelligence Network (NEoLCIN): report of the first year
Using intelligence to improve end of life care

17 June 2011 - National End of Life Care Programme / National End of Life Care Intelligence Network (NEoLCIN)

The NEoLCIN aims to improve the collection and analysis of data about end of life care services. It provides information to government, service providers, commissioners and researchers on adults approaching the end of life and on the quality, volume and costs of care provided to them.

This document highlights what the network has achieved in its first year of operation.

Published in: Health & Medicine
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The National End of Life Care Intelligence Network (NEoLCIN): report of the first year

  1. 1. The National End of Life Care Intelligence Network (NEoLCIN): report of the first year Using  intelligence  to  improve  end  of  life  care     Accessible  and  reliable  data  is  more  important  than  ever  in  an  era  of  patient  choice     and  funding  challenges.   The  NEoLCIN  aims  to  improve  the  collection  and  analysis  of  data  about  end  of  life     care  services.  It  provides  valuable  information  to  government,  service  providers,   commissioners  and  researchers  on  adults  approaching  the  end  of  life  and  on  the     quality,  volume  and  costs  of  care  provided  to  them.  Such  intelligence  will  help  drive   improvements  in  the  quality  and  productivity  of  services.   This  document  highlights  what  the  network  has  achieved  in  its  first  year  of   operation.  
  2. 2. INTRODUCTION   Professor  Sir  Mike  Richards   (National  Clinical     Director  for  Cancer     and  End  of  Life  Care)   Efforts  to  drive  up  the   quality  and  efficiency  of     end  of  life  care  services  have,  in  the  past,  been   hampered  by  the  relative  paucity  of  high  quality   data.  This  is  why  we  set  up  the  NEoLCIN    to   help  drive  forward  implementation  of  the   national  end  of  life  care  strategy.   A  year  on  from  its  inception  I  am  very  pleased     to  say  that  the  network  is  firmly  established  and   has  already  provided  new  insights  on  end  of  life   care.  Importantly,  it  is  bringing  together  key   experts  from  a  range  of  disciplines,  all  of  whom   are  committed  to  intelligence  as  a  driver  for   improving  quality.     These  experts  are,  in  turn,  bringing  together     large  datasets  from  health  and  social  care     (as  well  as  death  certification)  to  enhance  our   understanding  of  care  delivered  in  the  last     year  of  life.     but  I  am  confident  it  will  have  an  increasingly   important  role  in  underpinning  the   commissioning  and  provision  of  care  in     the  future.     OVERVIEW   Claire  Henry     (Director  of  the     National  End  of  Life     Care  Programme)   The  NEoLCIN  has  hit  the   ground  running.   In  the  twelve  months  to  June  2011  it  has   published  nine  reports,  completed  local  end     of  life  care  profiles  and  developed  tools  to  aid   both  commissioners  and  providers.   The  end  of  life  care  profiles  allow  current   commissioners  and  the  emerging  GP  consortia   to  benchmark  performance  against   neighbouring  or  similar  local  health  economies   (see  page  three).  They  draw  on  one  of  the   regional  variations  in  how  and  where  we  die.   Some  of  the  other  tools  fed  into  the  review     of  palliative  care  funding,  due  to  report  this   summer.   on  co-­ordinated  services,  the  network  has   commissioned  studies  exploring  how  social  care   can  work  with  healthcare  partners  to  improve   end  of  life  care  services  and  efficiency.     reports  on  dementia  and  variations  in  place     of  death,  has  proved  of  wider  interest    being   covered  by  national  television  and  newspapers   as  well  as  the  specialist  press.   NEoLCIN  will  continue  to  provide  the  data     and  analysis  which  will  shape  the  National  End     to  improve  end  of  life  care.  To  ensure  even   closer  co-­ordination,  management  of  the   network  is  now  sited  within  the  programme.   The  network  will  also  prove  an  increasingly   valuable  resource  to  commissioners,   policymakers,  providers  and  researchers.   2    
  3. 3. ACHIEVEMENTS   End of Life Care Profiles This  set  of  interactive  web  tools   is  available  on  the  website  and   gives  easy  access  to  valuable   data  on  end  of  life  for  each   local  authority  area  in  England.     The  profiles  display  information   on  the  number  and  proportion   of  deaths  in  each  area,  by  cause   and  place  of  death.  They  also   show  the  age  and  gender     of  those  who  died.  Users  can   compare  local  data  with   regional  and  national  averages,   helping  the  government,   commissioners  and  providers  to  identify  areas  of  need    and  to  plan  and  deliver  effective  health  and   social  care  services.     The  profiles,  which  have  been  developed  by  the  South  West  Public  Health  Observatory,  are  presented   using  the  InstantAtlasTM  mapping  tool.  This  displays  the  indicators  in  map,  chart  and  table  format.     A  user  guide  is  available  on  the  website.     For  more  information  visit  http://www.endoflifecare-­     The  end  of  life  care  profiles  and  the  local  authority  level  data  they  provide     I  took  a  group  of  our  MSc  students  onto  the  website  and  they  were   amazed  at  how  much  important  information  they  could  access.  They  found   it  extremely  helpful  in  understanding  the  context  for  services  and  for  future   planning."   3    
  4. 4. REPORTS   The  network  has  analysed  a  variety  of  information  sources  and  so  far  produced  nine  reports     (see  pages  8,11  and  12).   Deaths from renal diseases in England, 2001 to 2008 (2010) This  is  the  first  study  to  provide  such  a  high  level  overview.   Using  Office  for  National  Statistics  (ONS)  mortality  data,     it  shows  the  absolute  numbers  of  deaths,  where  renal   diseases  are  either  the  underlying  or  the  contributory  cause.   It  also  provides  breakdowns  by  age,  sex  and  place  of  death.   Population  pyramids  illustrate  the  age  profiles  of  people   dying  with  different  types  of  renal  disease  (chronic  renal   failure,  acute  renal  failure,  hypertensive  renal  disease,     renal  ischaemia  and  infarction,  and  renal  carcinoma).     This  indicates  likely  differences  in  end  of  life  care  needs   depending  on  age  and  cause  of  death.  The  report  will   therefore  be  an  invaluable  resource  for  policy  makers,   commissioners  and  providers  of  care,  patients,  their  relatives  and  carers  and  the  non-­statutory  bodies   who  support  them.     For  more  information  visit  http://www.endoflifecare-­ default.aspx#neolcin     This  report  is  the  first  time  anyone  has  pulled  together,  aggregated      Director   for  Kidney  Care,  Salford  Royal  NHS  Foundation  Trust.     Thanks  to  the  network  we  have  been  able  to  demonstrate  to   commissioners  and  policy  makers  in  primary  and  secondary  care  that     too  many  people  with  kidney  disease  are  dying  in  hospital.  It  has  also   enabled  us  to  argue  that  acute  kidney  injury  is  an  increasingly  common  -­   and  treatable  -­  condition,  which  affects  one  in  five  acute  admissions  to   hospital  and  is  now  a  leading  cause  of  amenable  mortality  and  increasing     4    
  5. 5. disease, dementia and senility in England (2010) This  study,  which  examines  numbers,  place  of  death,  age   and  gender  profiles,  uses  ONS  mortality  data  based  on   death  registrations  for  which  these  conditions  were   recorded  either  as  the  underlying  cause  of  death  or  as     a  contributory  cause.  The  data  on  contributory  cause   recording  highlights  how  important  it  is  to  search  the  entire   mortality  record  to  get  a  clearer  picture  of  the  numbers     implicated,  as  people  dying  of  these  conditions  have   specific  end  of  life  care  needs.  This  document  will  therefore   be  an  invaluable  resource  to  policy  makers,  commissioners   and  providers  of  care,  individuals,  their  relatives  and  carers   and  the  non-­statutory  bodies  who  support  them.  An  accompanying  spreadsheet  provides  data     by  primary  care  trust.   For  more  information  visit  http://www.endoflifecare-­ default.aspx#neolcin       physician  and  British  Geriatrics  Society  dignity  champion.     Palliative  care  physicians  tend  to  look  at  this  area  from  the  perspective     of  cancer  and  long  term  diseases.  The  information  around  place  of  death   helped  both  geriatricians  and  palliative  care  physicians  start  to  think  more   strategically  about  where  the  focus  of  future  care  development  and  training     5    
  6. 6. WEBSITE   OTHER  RESOURCES   The network website The end of life quality assessment tool (ELCQuA) This  new  online,  self  assessment  tool  is  now   freely  available  to  benchmark  and  monitor   progress  against  a  set  of  core  specifications,   End  of  life  care  strategy:  quality  markers  and   measures  for  end  of  life  care  (2009),  published   to  support  implementation  of  the  national  end   of  life  care  strategy.   The  website  has  already  become  a  key  research   tool  and  is  used  regularly  by  organisations   seeking  information  that  supports   commissioning  and  service  development.   It  focuses  on  sharing  the  relevant  data  and   analysis  about  end  of  life  care  for  adults     in  England  with  the  professionals  who  make   decisions  about  policy  and  services.   It  includes  data  analysis,  guides  to  key  data   sources,  profiling  tools,  publications,  advice  and   direct  links  to  other  useful  resources,  such  as     the  ONS  mortality  data  and  the  NHS  Information     http://www.endoflifecare-­   Manager  End  of  Life  Care  at  the   Merseyside  and  Cheshire  Cancer   -­  not  wordy  -­  which  is  great.   The  illustrations  of  what  you  do   and  what  the  screen  will  look  like   when  you  access  certain  data  are     6     ELCQuA  uses  simple  traffic  light  assessments   and  provides  consistent  analysis,  allowing   national  and  local  comparisons.  It  also  enables   users  to  assess  and  track  their  progress  in  any   area  of  care  that  they  consider  to  be  a  priority,   with  the  flexibility  to  add  local  objectives  to     its  calculations.   ELCQuA  links  operationally  to  the  NHS  Quality,   Innovation,  Productivity  and  Prevention   Challenge  (QIPP),  the  end  of  life  care  key   performance  indicators  (KPIs)  and  the  Care   Quality  Commission  prompts  for  end  of  life  care.   NICE  is  currently  developing  a  Quality  Standard   for  end  of  life  care  and  we  plan  to  incorporate   this  too,  once  it  is  published  later  in  the  year.   For  more  information  go  to  http://     Margaret  Saunders,  consultant   in  palliative  medicine  at   Papworth  Hospital  NHS   Foundation  Trust.     Once  one  grasps  the  approach,   the  scope  is  excellent."  
  7. 7. END  OF  LIFE  CARE  MODELLING  TOOLS   These  three  new  resources  support  service  providers  and  commissioners  to:   Identify  the  end  of  life  care  needs  of  their  local  population   Improve  early  recognition  that  people  are  approaching  the  end  of  life   Reduce  the  number  of  deaths  in  hospital   Understand  the  trajectories  of  different  illnesses   Identify  the  impact  on  their  workforce.     The Yorkshire and the Humber commissioner financial model Developed  by  NHS  Yorkshire  and  the  Humber,  this  uses  ONS  and  Secondary  Use  Services  data     to  look  at  how  many  people  who  died  in  acute  hospitals  could  reasonably  have  ended  their  days     in  an  alternative  care  setting.  It  also  calculates  the  cost  implications  for  a  local  population.     The cohort model Developed  by  the  Whole  Systems  Partnership,  this  simulates  the  likely  key  end  of  life  care  needs  for     a  typical  population  of  100,000  over  time.  It  focuses  on  the  implications  of  early  recognition  and   reduced  hospital  admissions  and  considers  the  patterns  for  a  key  range  of  disease  trajectories.     Skills for Health functional analysis Developed  by  Skills  for  Health,  functional  analysis  identifies  the  community  workforce  skills  required   to  ensure  that  an  individual  in  their  last  year  of  life  receives  quality  care.  It  supports  service  managers   and  commissioners  to  identify  appropriate  workforce  structures  and  the  required  competences.   When  used  with  the  associated  cohort  model  it  will  also  help  determine  end  of  life  care  costs.   For  more  information  go  to  http://www.endoflifecare-­     I  have  been  singing  the  praises  of  these  NEoLCIN  resources  and  use  them   Delivering  Choice  programme.     Recently  I  used  the  cohort  model,  which  has  proved  very  useful  in  our     7    
  8. 8. OTHER  PROJECTS   National survey of patient activity data for specialist palliative care services: MDS full report for the year 2009-2010 (NCPC/NEoLCIN, 2011) This  report  provides  valuable   information  on  hospice  and   specialist  palliative  care  services   across  England,  Wales  &   Northern  Ireland.  It  is  the  only   national  collection  of  data     in  relation  to  specialist  palliative   care  activity.  The  National  Council   for  Palliative  Care  (NCPC)  has   been  collecting  and  reporting     on  the  minimum  data  set  (MDS)   for  specialist  palliative  care   services  for  fifteen  years  and  the   intelligence  network  supported   them  with  this  most  recent  document.  It  will  help  inform  local   service  development,  management  and  audit  as  well  as   supporting  commissioning  and  development  of  national  policy.   Review,  due  to  report  later  this  year.   Despite  the  fact  that,  historically,  specialist  palliative  care  has   tended  to  be  more  readily  accessible  for  people  with  cancer,     the  latest  data  shows  that  some  people  with  other  conditions  are   beginning  to  get  better  access  to  those  services.  For  example,     motor  neurone  disease.  However  there  is  still  a  long  way  to  go     to  achieve  equality  of  access  for  people  whatever  their  diagnosis.     Aggregated  data  has  been  collected  up  to  this  point  but  the   network  is  currently  working  with  the  NCPC  towards  collecting   data  for  individuals  and  episodes  of  care.  When  linked  with  the   other  data  sets  this  will  allow  additional  analysis,  further   improving  its  potential  to  improve  service  quality  and  efficiency.   See  the  full  report  at  http://www.endoflifecare-­     8     NCPC workforce survey 2010 Workforce  development  is     one  of  the  key  aspects  to  the   end  of  life  care  strategy.     The  specialist  palliative  care   workforce  has  a  vital  role     to  play  both  in  providing  care   for  people  with  complex  needs   and  also  in  educating  their   non-­specialist  colleagues.   NCPC,  with  the  NHS   Information  Centre  and  the   Centre  for  Workforce   Intelligence,  has  carried  out     a  number  of  surveys  of  the   specialist  palliative  care   workforce  in  hospitals  and     the  voluntary  sector  over  the   last  few  years,  collecting  data   about  numbers,  gender,     age  and  banding  (for  nurses).   This  helps  commissioners  and   providers  to  identify  gaps     or  surpluses  in  local  areas  and   to  plan  the  role  the  specialist   workforce  might  take  in  wider   staff  development.  The  data     is  also  very  relevant  for   recruitment  and  succession   planning.  The  intelligence   network  supported  the  2010   survey,  the  results  of  which  are   due  to  be  published  in   summer  2011.   For  more  information  go  to policyandcampaigns/ Workforce  
  9. 9. End of life care locality registers Improving  the  coordination  and  quality  of  care   for  people  at  the  end  of  life  is  a  major  aim  of   the  national  end  of  life  care  strategy.  Because     of  the  range  of  staff  involved,  effective  systems   for  sharing  information  are  required  if  people   are  to  die  in  the  place  of  their  choosing  and   with  their  preferred  care  package.     Eight  sites  across  England  have  been  part  of     a  pilot  programme  to  develop  and  test  locality   registers  as  a  way  to  share  key  information   wishes  -­  and  deliver  service  improvements.     An  interim  evaluation  (carried  out  by  Ipsos   MORI)  shows  the  key  findings,  including  the   principal  challenges  faced  in  setting  up  a   register  and  how  these  have  been  overcome.     This  is  available  at  http:// end-­of-­life-­locality-­registers-­evaluation.   A  final  report,  which  is  due  in  June  2011,     will  provide  more  detail  on  the  approach   adopted  by  each  of  the  pilot  sites.   To  support  on-­going  implementation  of  the   registers,  an  application  is  underway  with     the  Information  Standards  Board  for  Health     and  Social  Care  to  develop  a  national   information  standard  that  specifies  a  core  end   of  life  care  dataset,  with  agreed  definitions.     Feedback  from  the  pilots  suggested  that  the     to  change  to  better  reflect  what  they  are   intended  to  do.  A  new  provisional  name,   The Nuffield Trust report: Social care and hospital use at the end of life (2010) The  Nuffield  Trust   compared  costs   across  three   primary  care  trusts   by  using  data  that   links  patient   records   anonymously  and   provides  key   information  on  the   use  of  health  care   and  social  care  by   people  in  the  last  months  of  life.   It  found  that,  on  average,  30  per  cent  used  local   authority-­funded  social  care  in  the  12  months   before  death  and  that  uptake  was  higher     in  older  age  groups.  Use  of  local  authority-­ funded  social  care  increased  gradually  in  the  last   year  of  life,  whereas  NHS-­funded  inpatient   hospital  care  increased  sharply  -­  particularly  in   the  final  two  months.     While  a  direct  causal  link  cannot  be  confirmed,   it  does  suggest  that  any  reductions  in  the   availability  of  local  authority-­funded  social  care   might  increase  demand  for  hospital  services.     A  more  detailed  follow-­up  study  has  been   commissioned  to  provide  a  better   understanding  of  the  full  care  picture  for  people   at  the  end  of  life.   The  full  report  can  be  viewed  at detail.aspx?id=145&prID=752     is  proposed.   9    
  10. 10.   VOICES The  lack  of  reliable  methods  for  collecting  information  on  personal  experiences  is  a  major   challenge  for  end  of  life  care  research.   It  can  be  very  difficult  to  obtain  the  views  of  people  nearing  the  end  of  life  because     they  are  often  too  ill  to  be  interviewed  or  to  complete  a  questionnaire.  Some  may   deteriorate  very  rapidly  and  unexpectedly.   An  alternative  is  to  approach  bereaved  relatives  and  friends  to  seek  proxy  views.     The  VOICES  questionnaire,  which  was  first  developed  in  the  1990s  by  Professor  Julia   Addington-­Hall,  has  been  frequently  used  for  this  purpose.   The  Department  of  Health  and  the  University  of  Southampton  have  recently  tested     a  shortened  version,  called  VOICES-­SF.  This  asked  58  questions  designed  to  find  out     national  end  of  life  care  strategy.  A  report  on  the  pilot  will  be  published  this  summer     and  will  inform  the  implementation  of  a  national  survey  of  bereaved  people.   The  questionnaire  is  posted  to  a  randomly  selected  group  of  bereaved  relatives,  and     so  far  tests  have  shown  it  to  be  a  sensitive  and  successful  measurement  tool  which  can     for  example    detect  variations  between  care  settings,  by  place  or  cause  of  death.   The  valuable  information  this  approach  provides  can  be  used  to  monitor  end  of  life  care   and  to  direct  service  improvements,  prioritising  the  needs  and  views  of  users.   For  more  information  go  to­voices -­website  and   NEoLCIN user group Established  to  draw  on  user  experiences  and  personal  knowledge  of  end  of  life  care.     Members  are  consulted  on  the  network's  website,  publications  and  other  products     and  they  also  have  input  into  the  NEoLCIN  Stakeholder  Group.  This  ensures  that  the  user   perspective  is  firmly  embedded  in  everything  the  network  does.   10    
  11. 11. OTHER  REPORTS  FROM  THE  NETWORK   Deaths registered as occurring 011) Uses  ONS  mortality  data  to  examine  deaths  that  are  registered  as  occurring  at  a   establishment  and  how  they  vary  by  age  and  sex.     External causes of death (2011) Examines  variations  in  death  from  'external'  causes  (including  injuries,  falls,     self  harm,  assault  and  poisoning)  by  age,  cause  and  sex.       Predicting death: estimating the proportion of 011) Compares  data  from  a  number  of  sources,  to  estimate  the  proportion  of   registered  deaths  which  may  be  unexpected  and  are  therefore  unlikely  to  be   included  in  an  end  of  life  care  register.   Deaths in older adults in England (2010) Provides  data  that  highlights  the  importance  of  understanding  the  differing   needs  of  older  adults  at  the  end  of  life.     11    
  12. 12.   Variations in place of death in England: inequalities or appropriate consequences of age, gender and cause of death? (2010) Highlights  key  analysis  of  the  end  of  life  care  profiles  indicator  sets  and   additional  data,  breaking  down  place  and  cause  of  death  by  age  and  sex.       Deaths from neurodegenerative diseases in England, 2002 to 2008 (2010) Analyses  the  ONS  mortality  data  to  give  insight  into  differences  in  numbers,   rates  and  place  of  death  for  selected  neurodegenerative  diseases.       These  reports  can  be  found  at  http://www.endoflifecare-­ default.aspx     Contact info www.endoflifecare-­     Contact:  for  more   information   National  End  of  Life  Care  Intelligence  Network   3rd  Floor   St  John's  House   East  Street   Leicester   LE1  6NB   Telephone:  0116  222  5103  /  5107   12     Over  the  last  year  the  NEoLCIN  has   worked  in  close  partnership  with  the   National  Cancer  Intelligence  Network   and  the  South  West  Public  Health   Observatory.