1. Jenny Walker TB Specialist Nurse Liverpool Community Health Enhanced Case Management for TB patients

2. The RCN define standard case management as care which is: “co-ordinated by a named case manager and is appropriate for any non-clinically complex patient who is able to self-medicate and have monthly follow-up in a hospital or community setting” For SCM patients the recommended ratio is 1 nurse to 40 cases per annum (RCN, 2012) Standard Case Management (SCM)

3. ECM applies to any case where more than the usual amount of TB Nurse time as outlined by the RCN is required for their management Level 0 (zero) refers to SCM ECM levels ranged from 1-3 depending on their complexity For ECM patients the recommended ratio is 1 nurse to 20 cases per annum RCN (2012) What is Enhanced Case Management (ECM)?

4. In year 1 there was anecdotal discussion at the cohort reviews around what the specialist nurses consider to be enhanced case management. 30% of all cases presented required ECM Understanding the complexity of TB cases is fundamental to assessing the manpower needed to provide effective care To assist the specialist nurses to effectively categorise their patients a series of levels have been agreed with guidance provided for each level. All cases required scoring including post-mortem cases So why bother with a complexity score for ECM?

5. Other specialities use complexity scoring systems but the majority of these focus on physical and psychological aspects of patient care (Brady et al, 2012). TB patient’s often have complex problems that extend far beyond the physical and social issues that other illness and diseases affect. Access to property / language barriers / stigma / contact tracing are issues that can dramatically effect TB care Why use ECM scoring?

6. After reviewing the effectiveness of ECM complexity scoring the percentage of cases requiring ECM has doubled overall in the NW in year 2 from 30% to 61% The overall increase is that TB specialist nurses had previously been underestimating the workload of the lower level ECM cases and had not categorised them as ECM Has ECM Complexity Scoring Guidelines Helped

7. Percentage of cases requiring ECM levels comparing 2011/12 and 2012/13

8. A systematic review of a current case load that was on- going was undertaken. The areas that the patients lived in consisted of low and moderate incidences of TB cases Key areas that caused concern for patients and / or extended workload for TB teams these included –Social –Physical –Access issues –Stigma –Contact tracing How Did ECM Complexity Scoring Happen?

9. Examples of complexity levels Level 1Level 2Level 3  Fortnightly visits  Interpreter for first visit but some English  Elderly - monitor side effects  Children - concordance of child and parent / adult  Requires medications from GP / community pharmacy due to blister packs - to check correct doses  Requires signposting for benefits / financial issues  Contact tracing from various areas / setting i.e. patient out of area, workplace, community group settings  Difficult access. Eg no front door bell, >1 address, problems getting time off work/college, those who refuse home visits etc.  Stigma that can be dealt with through 1:1 education  Complex meds / co-infection meds i.e. TB meds given when on ARV’s already  Disease site eg smear positive pulmonary or central nervous system disease  Weekly visits  Having complex side effects so requires regular LFT etc.  Needs more regular prompting with medications – blister packs / Isoscreen regularly / tablet counts  Financial difficulties prevent treatment compliance i.e. attending clinic apt / poor nutrition / heating  Stigma that requires more formal education i.e. community centres / work places  Transmission within contacts / children who are contacts  Language barriers throughout treatment requiring easily accessible interpreter either face to face or phone interpretation at each visit  Alcohol and/or drug dependency without LFT derangement  Difficult to reach – DNA at clinics / home for reviews  HIV and TB co-infection starting both ARV and TB meds at the same time  Single drug resistance  Difficult language to access throughout treatment  DOT  Homelessness or housing issues due to finance  Illegal immigrants – difficult to access funding / benefits  Drug resistance  More than one drug resistance  Needs reintroduction of medications i.e. deranged LFT’s  Complex contact tracing – transmission within children / vulnerable groups / extensive transmission  Involvement of PHE for workplace / community screening  Potentially dangerous patients where more than one person is required to visit  Children who DNA and social service involvement is required

10. Fortnightly visits Clinical issues - Complex medication / HIV co-infection already on ARV’s / blister packs / child on treatment / elderly pt’s / disease site (smear +ve PTB / CNS) Social issues – difficult access / no doorbell / requires signposting to benefits TB Specific – contact tracing, out of area / education to workplace etc. / Stigma dealt with on 1:1 Sections of ECM Level 1

11. Weekly visits Clinical issues – complex side effects / regular LFT’s etc. / HIV & TB co-infection starting ARV’s at same time / requires extensive prompting (blister packs / tablet counts) / single drug resistance Social issues – financial difficulties leading to poor nutrition / language barriers requiring interpreter for initial visits & diagnosis / alcohol &/or drug dependency which is manageable / difficult to reach (no phone) / DNA at clinics & visits TB Specific – contact tracing with transmission / child contacts / education to workplace etc. / Stigma requiring formal education i.e. community centres Sections of ECM Level 2

12. DOT Clinical issues – Multiple drug resistance / reintroduction of medications / multiple co-morbidity Social issues – language barriers throughout treatment / homelessness / illegal immigrant / no access to benefits or funding / dangerous pt’s requiring risk assessments and extra resources TB Specific – contact tracing (transmission within children, children who DNA, vulnerable groups, extensive transmission) / involvement of PHE for workplace screening etc. Sections of ECM Level 3

13. Percentage of ECM cases categorised as level 1, 2 and 3 ECM 1ECM 2ECM 3 Greater Manchester55%31%14% Cheshire Warrington Wirral36%27%36% Merseyside37%21%42% Lancashire25%37% Cumbria33%42%25% North West45%32%23% Table 13: Percentage of cases categorised as levels 1-3 by Area Team

14. North Central London (NCL) began using cohort review in 2010 Approx. 500 cases (pre cohort review) & 750 cases (during cohort review) were notified in NCL –38% required DOT(pre cohort) –57% required DOT (during cohort review) 1515 cases notified during first 2 years of cohort review –30% of North West patients needed ECM prior to complexity scoring –61% required ECM after complexity scoring introduced (Anderson et al 2013) Comparative review of another area

15. Cohort Review Data Collection Form

16. GB – 46 year old, Smear +++ PTB, paranoid schizophrenic, housing issues, no social support, drug and alcohol dependent, defaulted on treatment after discharge as unable to contact him / did not turn up for OPA Prior to scoring for ECM he triggered for ECM After scoring he triggered a 3 Case Scenario

17. SK – 52 year old Smear + PTB, alcohol abuse (not disclosed) Polish immigrant. Extensive transmission amongst family (2 active & 3 latent), difficult to contact, non- English speaking. Relatively easy to manage clinically so would not need ECM if contact tracing / access to property / language barrier where not taken into consideration With the use of ECM he scored 3. Case Scenario

18. JD – 64 year old, referred on post mortem, patient had extended social life! Wife and mistress! Due to post mortem referral would not need ECM as no clinical issues Scored a 2 as there was complex communication issues with social services / investigation work related to symptoms / tracing contacts / dealing with the deceased family and ‘friends’ Case Scenario

19. RCN (2012) Tuberculosis case management and cohort review. RCN: London Anderson C, White J, Abubakar I et al (2013) Raising Standards in UK TB Control: Introducing Cohort Review. Thorax Brady N, Fleming K, Thiemann-Bourque K, Olswang L, Dowden P, Saunders M and Marquis J (2012) Development of the communication complexity scale. American Journal of Speech and Language Pathology. Vol. 21(2) pages 16-28 Reference