1. Rheumatology pathway report main findings June 2016 Jacqui Lyttle Report author

2. What will I cover? Why did we undertake the review? What did the review cover? Some key headlines/messages What is working well? What is working less well? What can be improved?

3. Why did we undertake the review To get a better understanding of the reason why biologic treatment expenditure continues to increase year on year To get a better understanding of the considerable variation in the use of biologic therapies across Devon and Cornwall To gain insight into the issues being faced by rheumatology services To look at opportunities for system and process improvement To look at opportunities for the spread of best practice and innovation

4. What did the review cover? High level overview of rheumatology services provided by RCHT, RDE, PHT, NDHT, SDHT Analysis and modelling of data Review of current services against NICE, RCP and other guidelines for service delivery Review of current services against Hackett and RSP for home care Review of data capture management systems Review of patient engagement processes and systems

6. Some key review headlines and messages

7. Some facts detailed within the report Per year local commissioners pay for  > 1,500 elective inpatient episodes at a cost of > £2 million  > 39,000 outpatient attendances at a cost of > £5.6 million In 2014/15 commissioners paid  > £18million on biologic treatments For  < 2500 patients  The continued rise in expenditure is due to NON RA patients  There is a 2.5 fold difference in the use of biologics

8. Some facts detailed within the report Across Devon and Cornwall we currently have:  5 different  service models  approaches to the use of biologic treatment  data systems/biologics registers  Initial outpatient waiting times ranging from 2 to 10 weeks  >5,000 patients with a booked appointment awaiting a follow up review - of those with an allocated date > 20% are outside their clinical window for review  >5,000 patients are currently sitting on pending lists with NO appointment date

9. For our population and demographics is that good, bad, average? We have no way of knowing as we currently have no system of measurement across Devon and Cornwall The review identified that rheumatology to date has not been seen as a high commissioning priority – despite an annual spend of > £26 million We currently have a system where we contract for high cost biologic treatments plus agreed levels of activity – rather than commissioning for outcomes We currently do not have the commissioning intelligence to measure what good looks like

10. What is working well?

11. High quality services and clinical engagement Clinical standards are high and recognised as such by the BSR, RCP, NRAS and ARMA There is a well established clinical peer network across the AHSN area The trusts work to the RCP guidelines (and broadly comply) for service delivery All 5 trusts work to the NICE guidelines for biologic treatment Patient satisfaction is good for all of the trusts

12. Best practice and innovation All 5 trusts have a strong history of innovation and best practice delivery Within each trust we see areas of best practice, in some case national award winners i.e. – Cornwall - research – Plymouth - PIC’s – South Devon - nurse led clinics – RDE - early synovitis clinics – Northern Devon - automated patient initiated PROM platform

13. What is working less well?

14. No commissioning strategy Services have developed through provider initiation rather than clear commissioner strategy and vision There is poor commissioning intelligence with no single minimum data set for the validation or triangulation of activity, cost and quality Speciality is looked at by 2 parts of local commissioning teams – High cost pharmacist because of the rising biologics spend – Performance leads looking at activity – who really just look at the rise and fall in numbers – There is also no clinical lead(s) looking at rheumatology within the local commissioning process Whilst we have examples of best practice across the systems we do not have one trust that can demonstrate that they are achieving best practice across the ENTIRE pathway

15. Variable performance standards Not all of the trusts are able to achieve best practice guidelines for early inflammatory arthritis Whilst all trusts routinely audit against and can demonstrate compliance with the NICE TAG guidelines for use of biologics only one is compliant with NICE quality standard 33 which looks at service delivery We have initial outpatient waits ranging from 2 weeks to 10 We have an ever increasing number of patient being seen outside of their clinical review period Only one trust in the AHSN area meets RCP guidelines for the number of WTE consultants per 100,000 head of population

16. Process variation There is no SOP in operation for home care – with no trust being able to demonstrate they were fully complaint with either Hackett or RPS recommendations There is poor commissioning intelligence with no single minimum data set for the validation or triangulation of activity, cost and quality There is currently no consistent approach to the coding of infusions and minor procedures

18. So how can we move forward and improve? By the development of a commissioning strategy and best practice service specification; which moves us from an input led transactional process to an out come based commissioning model which ensures consistent delivery and outcomes across the entire pathway of care: 1 Timely access to a specialist Initial diagnosis 2 Subsequent patient pathway and clinical management Compliance with NICE quality standards 3 Use of biologic treatments Home care management 4 Development of ‘real time’ PROM’s and PREM’s Triangulation of activity, cost and quality

19. So how can we move forward and improve? By undertaking a more detailed and targeted review to understand mismatches in capacity and demand, in-order to determine what resources/process changes are needed to ensure achievement of the new standards Servce review work streams Meds Management Biologics / Biosimilars Homecare & Gain-share DMARDs shared care Referral & Access GP diagnosis / education Referral routes & clinic access Specialist Service Capacity Consultants & clinics Specialist nurses & clinics MDT working Patient Management Measures of success PROMs/PREM's Information capture & audit

20. Some quick wins across STP footprints Rollout the North Devon PROM’s system across the patch Develop a common framework for patient feedback, with consideration that the Commissioning for Quality in Rheumatoid Arthritis questionnaire be adapted locally for consistency As an interim a common minimum data set be developed to allow the transfer of commissioning intelligence information both for high cost drugs, activity and outcomes Improving communication between providers and commissioners and between different parts of the commissioning process Develop an agreed SOP for the prescribing, approval and payment of biologics Development of a protocol for the use of bio similars Development of a standard protocol for gain shares Establishment of a biologics review service to support systematic dose reduction and regime changes

21. Summary – the review Has allowed for the very first time oversight of the provision of rheumatology services across Devon & Cornwall Identified that the use of biologic treatment has a link to service models and access to treatment Showed that whilst there are examples of excellence, the consistent provision of high quality care and access to services is patchy across Devon & Cornwall

22. Final message We are good BUT we COULD be better!