Dr Bill Lynn Clinical Lead, TB project London Health Programmes 2012 How can commissioning and the London TB Plan provide practical solutions to London’s TB problem? Dr Bill Lynn Clinical Lead, TB project London Health Programmes 2012 Lynn Altass, London Health Programmes Jacqui White, North Central London TB team http://www.londonhp.nhs.uk/services/tuberculosis

Pattern of TB situation in big cities differs across the EU Figure 1: TB notification rates in a selection of countries and big cities of EU/EEA, in 2009. < 20 cases per 100,000 population ≥ 20 cases per 100,000 population Riga / Latvia 16.9 / 6.0 Copenhagen / Denmark 43.0 / 43.2 21.3 / 7.0 Rotterdam / Netherlands Vilnius / Lithuania 31.9 / 62.1 44.4 / 14.8 London / United Kingdom Warsaw / Poland 17.8 / 21.6 23.4 / 8.2 Paris / France Bucharest / Romania 81.0 / 108.2 33.2 / 6.5 Milan / Italy Sofia / Bulgaria 31.9 / 38.3 24.3 / 16.6 Barcelona / Spain Disclaimer: Survey performed by the Metropolitan TB network, www.metropolitantb.org Please note that ECDC does not collect city-level TB surveillance data and take no responsibility for accuracy of data collected for this survey.

TB rates in London, 1982-2010

2011 Data 3588 cases 46 per 100,000 population (nationally 13.6) Not evenly distributed 85% cases non-UK born High proportion reactivation of latent disease TB Epidemiology in London sarah.anderson@hpa.org.uk

How was the plan developed ? By the TB community involving nurses, consultants, GPs, HPA and TB networks Project board and clinical working group with strong public health expertise and service user representation Stakeholder events along with meetings, national and public media, 1:1 interviews Over 200 individuals provided feedback including GPs, patients, voluntary and community organisations, public health and government committees There was widespread support for the plans

Reduce TB cases in London by 50% over the next 10 years Vision Reduce TB cases in London by 50% over the next 10 years http://www.londonhp.nhs.uk/services/tuberculosis

Model of Care Recommendations in the model are targeted at three aspects of the patient pathway: Improving detection and diagnosis of the disease Both active and latent infection Better coordinated commissioning Addressing variability of provision

Key issues for TB control in London Latent TB Active transmission 80% of active cases are from latent TB, activated years after the patient has become infected More prevalent in social risk groups including drug and alcohol users, homelessness, prisoners and people with mental health issues No systematic screening – majority identified only when disease reactivates Poor treatment completion rates lead to high rates of drug resistant TB in some patient groups Prophylactic treatment has not been consistently applied Benefit/risk ratio Side effects/compliance Funding Patients from high risk groups often present late, resulting in complications and onward transmission of the disease to others

Improving detection and diagnosis Raise awareness in communities with higher rates of TB disease Raise awareness and knowledge of TB among wider groups of health and social care workers Explore the potential of active and latent TB case finding New registrations in primary care ? How to access ‘hidden populations’

Active and latent TB case finding Through higher awareness earlier referral of patients with possible active TB Improved contact tracing once infective cases identified Targeted screening and prophylaxis offered to individuals in risk groups Based on use of IGRA testing in primary care

Can case finding in London work? TB Cases/100,000 Screening programme Slide courtesy of Chris Griffiths, 2012

Financial considerations – costs Annual NHS spend on healthcare in London £13.9billion Annual TB healthcare spend in London At least £18-20 million Wider cost – financial and social Unknown Annual costs of the TB plan £7.2 million Including additional diagnostic and treatment costs from active case finding

Financial considerations – savings Cost of TB Treatment Case Finding vs. Do Nothing

Do Nothing is Not and Option

Current commissioning of TB TB services predominantly provided by acute trusts Not all activity is recorded correctly or completely Provider income doesn’t link to service provision Only 1 cluster has a commissioning manager (covering only 13% London’s TB cases) Sectors with the highest proportion of spend on staff (including the MDT approach ) have seen a reduction in TB numbers Metrics based on the 2004 National TB Action Plan – used as a tool to measure progress rather than performance Lack of specialist knowledge to manage the relationship between commissioning and provision Variability of provision means best use is not made of the resources i.e. staff mix, DOT, contact tracing . No systematic approach across London – the 5 local TB networks support local service planning, development and protocols but not through proactive commissioning – organic - with some TB teams employed by community trusts with the service in an acute trust - so we don’t accurately know what the TB workload is and this potentially impacts on TB services resources providers of care, health protection, social care and housing and fail to take note of the extensive guidance (NICE, DH etc) including performance management and which fail to take account of the London TB metrics and TB control Linking TB rates to staff ratios shows wide variation across and within sectors i.e. 2 adjacent services provide very different TB support 16

Proposed London Model of Care approach Establish a London TB commissioning board to coordinate TB control and provide proactive, robust commissioning of TB services Ensure the treatment of medically complex and multi-drug resistant TB is managed along agreed pathways by clinical teams at specialist TB centres Pan-London Find and Treat service to work with local delivery boards to reduce the number of individuals failing to complete treatment Establish a central fund, managed by the TB commissioning board, to provide temporary accommodation for people with TB whose homelessness is a risk to completing treatment 17

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Proposed objectives of the new London TB commissioning board Ensure all relevant agencies are engaged in the control of TB in London Achieve a year on year reduction in the incidence of TB in London Hold providers of TB services accountable for their performance against agreed standards of care and control To ensure a coordinated, multi-agency approach to the control of TB in London To ensure robust commissioning of TB services, including sound planning and strong performance management To improve the quality and productivity of services To ensure capacity of services is related to need To exploit opportunities for cost reduction Strengthen and redevelop the London TB Commissioning Board to address current system fragmentation by coordinating provision and strengthening the perfomance management of servcies. The board would bring together the functions of health care commissioning, health protection and public health to ensure a co-ordinated, multi-agency approach to TB control incl continuing to comission F&T with more robust mgt to ensure its activities are aligned with the moc Hold a cemntral budget to fund temp accom for those with nrpf Commisison tb servcies with appropriate level of expertise and access to specialist facilities - 3 levels of servcie are proposed formally acknowledging the informal provision already in place Robust commissioning of TB services will include sound planning, standard setting and strong performance management 19

The new London TB commissioning board would achieve these objectives by: Commissioning all TB services in London Developing standards in relation to clinical care, investigation and prevention Maintaining an overview of developments in research, clinical practice, diagnostics and treatment and recommending appropriate action 20

Addressing variability of provision Local delivery boards established to act as a single providers of TB services - mirror current networks to maintain strong clinical relationships and referral patterns Delivery boards will ensure standardised pathways and protocols are developed to promote consistent, high quality care for patients Workforce development group will ensure appropriate skill mix and best value for money is achieved 21

What are we doing in 2012/13? London’s commissioning intentions for 2012/13 included this statement: Tuberculosis (TB) Pan-London TB protocols have been agreed for the use of directly observed therapy and implementation of cohort review. All providers will be expected to adhere to these protocols and to use the risk assessment tool available through the London TB Register, to identify patients at risk of non-compliance with treatment. And in 2012/13 contracts - 'Quality Requirements' for TB 22

NHS Commissioning Board i.e. as a specialised service In the new NHS architecture the four options for commissioning of TB services are: Public Health England NHS Commissioning Board i.e. as a specialised service Local Authorities Clinical Commissioning Groups 23

Partner in service delivery not commissioner Public Health England Partner in service delivery not commissioner NHS Commissioning Board i.e. as a specialised service TB not a specialist service (despite much lobbying!) Local Authorities Partner in service delivery, not NHS service provider Clinical Commissioning Groups NHS CB is likely to recommend that TB is commissioned collaboratively 24

So where does TB fit into CCGs/CSSs commissioning? From April 2013, Clinical Commissioning Groups (CCGs) will have the statutory responsibility for commissioning health services Local commissioning support services (CSS) are being set up to offer an efficient, locally-sensitive and customer-focused service to CCGs (based around the current PCTs/clusters) CCGs are likely to need support in leading change and service redesign, procurement, contract negotiation and monitoring, information analysis, communications and corporate services such as finance Around 24 commissioning support services being established across the country 25

CCGs Potential negative effect on TB control – insufficient budgetary flexibility to work across boundaries for outbreaks, drug resistant TB, NRPFs, F&T Fragmentation with responsibility for public health devolved across at least 3 very different organisations and impair the response to TB across London reducing joint working and co-ordination Further fragmentation in services leading to poor and varied quality of care for patients, increased rates of active, latent and drug resistant TB Financial considerations - simple, complex, greater cost to the system for TB services and treatment for patients 26

CCGs – potential positive Closer local working in partnership with GPs Local health and well being Boards Partnership working at local level with opportunities for innovative working and focussed funding

What can we do? During 2012/13 business as usual Work in 2012/13 to demonstrate complexity of TB service delivery requires a single matrix approach to improve patient outcomes i.e. accommodation, complex TB care, Find and Treat, LTBI case finding Towards middle 2012/13 expect 1 Commissioning Support Organisation / Commissioning Support Services to emerge as London lead commissioner on behalf of London’s CCGs (collaborative commissioning) Based on smart evidence looking at geography, epidemiology, demography and service provision 28

Addressing variability in service provision through Cohort Review Jacqui White – Lead Nurse North Central London TB Service

Outline What is cohort review? Origins of cohort review? Implementation in North Central London Evaluation Impact Does cohort review address variability in service provision?

What is Cohort Review ? (1) Quality assurance tool to track and improve patient outcomes. Systematic review of patients with tuberculosis (TB) disease and their contacts to enhance the prevention and control of TB A “cohort” is a group of TB cases identified over a specific period of time, usually 3 months Cases are reviewed 6 months after they are notified.

What is Cohort Review? (2) TB cases are reviewed in a group setting with the following information presented on each case by the case manager: Patient’s demographic information Patient’s status: clinical, lab, radiology Adherence to treatment, completion Results of contact investigation Individual outcomes are assessed

What is Cohort Review? (3) Group outcomes are also assessed Indicators track progress towards national, regional and local service objectives. Everyone leaves the meeting knowing the results

Origins of Cohort Review? Tanzania – 1970’s New York – 1990’s Piloted in NC London - 2010

Implementation in North Central London An opportunity to review practice across 5 NCL sites Gain insight into our service – identify strengths and weaknesses Standardise practice/documentation Assess our contact tracing activities Identify gaps in service provision Assess our efforts compared to local / national TB control targets Review and improve data quality Encourage greater accountability

Evaluation of cohort review Evaluation 1 yr after implementation with the following aims: Assess impact on outcomes relating to case management and contact tracing: - Treatment completion - Offer of, and uptake of HIV testing of TB cases - Effectiveness of contact tracing Identify service issues raised Review the experience of staff and partners Assess the impact on data completeness Make recommendations

Clinical impact of cohort review Improved treatment outcomes from 82% to 90%, including among those with a social risk factor. Proportion of sputum smear +ve PTB with one or more risk factors receiving DOT increased from 42% to 67%. Reduction in proportion of lost to follow up at 12 months from 2.5% to 0%. Proportion of TB cases with sputum smear +ve PTB who had one or more contact identified from 79% to 100% Proportion of TB cases with sputum smear +ve PTB who had 5 or more contacts identified increased from 50% to 69%

Service impact of cohort review Collated and summarised under 5 headings. Assessed for potential public health risk and potential harm to the patient if issue remains unresolved. Treatment Delay in diagnosis - ? Patient, primary care or TB service Paediatric HIV testing – variable practice Standardised treatment protocols required. Case Management Increased provision of DOT needed for infectious cases with social risk factors. Current service configuration inflexible (9-5) Clinic v Community service e.g. Home visits as standard for every case, DOT workers, active case finding.

Service impact of cohort review Management of contacts Improved strategy needed to identify, engage, follow up and report on contacts. Incident management inconsistent and insufficiently resourced. Data Incomplete data on LTBR – improved data quality Education and training issues Externally eg A+E, primary care Internally - standardisation of nursing practice, IV drug administration for MDRTB, phlebotomy skills

Has Cohort Review addressed service variability in NCL ? Brings 5 sites together every 3 months to reflect on the clinical management of every case of TB and their contacts. Promotes standardisation via documentation, protocols and peer review Drives up quality and highlights service inequalities Forum to share good practice and reveals key areas of practice that require attention. Promotes collaboration on all levels internally and externally. Informs the future direction of our service based on evidence gathered in Cohort Review

Has Cohort Review addressed service variability in NCL ? …..there are a number of service issues which cannot be resolved due to: Current service configuration Limited resources Fragmented nature of the structure of TB services across London. .

To conclude: Cohort Review is a framework which underpins the entire case management and contact investigation process. It is a tool which enables us to address variability in service provision and ensures accountability for patient care on all levels.

For all cohort review enquiries: Jacquiwhite@nhs.net Thank you for listening.

Why this is really important 37 male born in India resident UK 10 years Employed, married with 2 children at school Presents - 4 months of fever, cough, weight loss. Several courses antibiotics Extensive pulmonary disease, admitted Smear positive – in hospital for almost 3 weeks Discharged on standard therapy

Attends first clinic visit– all seems well Then defaults Culture – INH resistance TB nurses visit at home Lost his job because of his time off work, started drinking, moved out of the marital home sleeping on various friends sofas 5 week re-admission – reconcilliation with wife Sent home with DOT Multidrug regimen including injectable agent

DOT seems to be going well for first 3 months Revealing fax from GP Readmitted – further 6 week admission Home with DOT Wife throws him out for good Homeless Various admissions over next 2 years to different acute hospitals around London, Finally developed MDR-TB Spent 6 months as inpatient elsewhere and eventually ‘cured’

How many other people did he infect? What was the cost Direct healthcare and treatment costs Indirect social care costs Family harm, impact on children etc Could this have been different??

What could have been different Offered screening for latent TB long before he developed active disease? Earlier diagnosis of first presentation could have avoided prolonged admission and he may have kept his job? More effective and co-ordinated care after initial diagnosis

What could have been different Co-ordinated approach at second admission Multidisciplinary Deal with social, substance use and accommodation issues Specialist help available to support local centre Better tracking and delivery of care rather than ‘loosing’ him across boroughs

Summary There is a plan Full and rapid implementation will be challenging in time of change, uncertainty and less cash Much has already been accomplished and substantial momentum to improve the detection and treatment of TB in London