Dr Frances Cole Clinical Lead, NHS Kirklees

1. Commissioning pain management services: what do care pathways for people with long term pain and clinicians need? Dr Frances Cole Clinical Lead, NHS Kirklees GP + Pain Rehabilitation Specialist, Bradford Teaching HospitalsJune 2012 frcole@btinternet.com

2. Health is a resource for living so we are able to: • Undertake daily activities Not feel bodily pain • Join in social activities Feel peaceful and happy • Do physical tasks Feel full of life • WHO 1984, Ware 1993

3. Poor understanding of pain condition/s and self manage confidently Dyslexia, literacy, language Long term low income +/- benefit issues Loss of work (paid/unpaid) Less contact with family, friends, social networks, specific support Housing structure / location unsuitable adaptations need to reduce disability Self coverage Health services programmes not flexible to meet needs Difficult to use public transport Unable to drive due to drugs Poor sleep patterns; Depression Fear, Anger, Shame, Fatigue Reduce goals, planning, pacing of daily life activities, Fitness activity levels reduced Perceived lack of control over their pain and their life Health needs change due to changing illness, disability. Pain relief mixed, variable Women > Men >65 more than<65 Vitamin D insuff Multidimensional impact of chronic pain on health Carers needs; little appropriate support

5. The NHS Commissioning Cycle

6. National policies – UKChief Medical Officer report 2009; Dept of Work & Pensions 2006 Dept of Health Long Term Health Condition Programme NICE Guidelines; UK Pain Summit 2011 British Pain Society MoM pathways; Royal College General Practice

7. Kirklees Joint Strategic Needs Assessment (JSNA) 2009 • Pain worst impact on health - physical function 20% = no physical activity • Affects 1 in 3 people 104,817 adults in Kirklees 89,679 affected = working age. • People < 65 years 31% pain in past year • People > 65 years 46% pain in past year: women > men • Poor sleep 1 in 3 Depressed 1 in 2 esp. back pain • More have heart disease, diabetes, stroke • 75% at least overweight • Linked to low income £££ • Impact on carers – many have chronic pain www.kirklees.nhs.uk/

8. The NHS Commissioning Cycle

9. What do patients need to manage pain? 2 Commissioners engaged patients NHS Kirklees; NHS Bradford + Airedale • Self care: key part of control on their lives + pain; want all GPs to refer all patients > self care services • Better self care information - range of media + sources • Better access to self care resources + services • Confidence in GP + their skills • Seeing right clinician at right time • Continuity of care: more seamless • Consistency of experience at all steps of pathway • Faster access: assessments + investigations • Faster access: Physiotherapy, Occup.Therapy, Pain Specialist

11. What do primary care clinicians need? • Change of model + pathway: biospychosocial model for long term pain • More knowledge + skills: <10 hrs training for doctors • More time with patient in consultation • Improve medicines management + clinical skills • Pain symptoms, side effects, guidance + decision aid tools • Manage emotional distress, cope with setbacks • Referral - minimum data > single entry point in pathway • Referral guidance – decision aids; Map of Medicine • Stop referring for spinal surgery for pain • Know about self care resources; where / how to refer or use them • More awareness - financial costs; primary + (secondary care clinicians)

12. Kirklees Council Scrutiny Panel for Health Inequalities2010 Main recommendations: • Consistent pain services - person centred approaches to pain management • Services closer to home • Training & professional development about self management options • Reduce referral times – physiotherapy • Pilot person centred chronic pain service across Kirklees

13. Pathway Objectives forNHS Kirklees Improve health & resilience by reducing disability + distress experience of persistent pain sufferers by a comprehensive, accessible + quality programme that • Commissions services with sustainable, consistent delivery + measure performance management • Monitors quality of clinical practice + meet standards set in line with local / national guidance • Ensures ongoing professional development • Ensures cost effectiveness + efficiency

14. Patient Centred Outcomes • Improve health as a resource for life • Improve confidence + sense of control (self efficacy) so…. improve self care with more ways to help themselves • Return to or stay in work • Reduce pain distress + intensity; total relief not expected • Improve mental health & wellbeing; less anxious + depressed • Reduce unhealthy behaviours: weight loss, stop smoking, more physically active • Reduce in health care use: GP, specialist referrals Patient Reported Outcomes Measure Scores

15. Pathway

16. Commissioning services: so people self care better in Kirklees • Expert Patients Programmes self management courses or support to develop self-care skills (for conditions e.g. diabetes, mental health, COPD + chronic pain • Health Trainers / Physical Activity Leisure Scheme- Help to change behaviour (e.g: lose weight, stop smoking, take up activity), 1:1 or group support, Specific for pain: REVIVE • Self Care Web Portal– Local information in one place. Access to Networks and opportunities to talk to people in same situation i.e. support groups, forum; • Libraries- bibliotherapy + range of self help books, pain toolkit ,CDs etc • Gateway to care offers advice, practical support for both patients + carers; network to relevant services • Better health at work– confidential support and advice for all work related issues • www.kirklees.nhs.uk/self care

17. Self management resources needed Tier 1 www.paintoolkit.org/ Tier 2 Tier 3 www.npowered.co.uk www.overcoming.co.uk/

18. Resources in clinics, libraries etc Oral + written information = important as drugs, test, scan or surgery Information needs change over time

19. Clinicians need more medicines management guidance Neuropathic Pain algorithm Opioid algorithm • Boost confidence so prescribe safely, effectively + ££ • Provide range of patient tools: self assess + self manage • Provide clinical tools to assess + review • Integrate • into GP computer System 1 + PCT website • with pain specialist clinicians www.kirklees.nhs.uk/yourhealth/long-term-pain

20. Commission pain specialist procedures • Agreement on range of treatments provided • Evidence focus + clinician dialogue with public health • Specific contracts; so stop some procedures + agree to limit repeats • Prior commissioning approval for complex treatments e.g. spinal cord stimulators

21. Outcomes so far – 4 years Tier 3 Pain specialist services: • Overspend agreed budget limits – moving to prior approval • Map of Medicine changes starting Tier 2 Pain service • 90% less referral to pain specialist • 50% less health care use – primary care • Patient confidence to self care increased by 50% • More GP’s confident to use drugs + support self care • Tier 2 specification + tender for 250,000 pop. Tier 1 Primary care • Medicines ManagementGP survey - use + helpful, costs flattening + savings • GP implement incentive scheme - drugs + self care referral Self care services Greater use + more proactive care pharmacy schemes, leaflets, other ways etc

22. Key messages • People with pain must be taken seriously!!!!! • Many helpful key drivers – clear frameworks, JSNA, Health Inequalities, Map of Medicine, etc • Quality information about local impact + evidence for action • Person Centred thinking so real outcomes specified • Being in control / resilience crucial i.e. able to Self care • Pathways need to be seamless, integrated with better skilled clinicians delivering consistent messages • Deliver more effectively for less ££££ • Collaboration between patients, clinicians, public health + politicians

24. Reviewing pain services • Involve services users at each stage of developing chronic pain pathway. • Patient views – needs based care pathway. • Feedback to service providers and PCT commissioners – inform care pathway

25. Engagement of service users • Recruitment – Public & Patient Involvement (PPI) database, via pain services, Expert Patient Programme (EPP) support groups • Discussion groups across Kirklees • Sessions facilitated by PPI team and Public Health • Report back to service users for comments

26. Proposed care pathway • Overall support for the proposals: • Liked patient centred approach- HNA’s and health trainer input • Improve access to GP /primary care - referral to specialist services • Want all GP’s to refer all patients to self care services • Better condition management • Improved emphasis on control via self care

27. Referring patients to self care services Patient & Health Care Professional – Shared decision making and discussion of self care options to support motivation to change and manage social, emotional and physical impact of LTC One single point of access Self Care • Menu of options • Self management courses • One to one support • On line support • Structured education courses • Support groups • Weight management • Behaviour change • Smoking cessation • Support for carers • Physical activity courses

28. Kirklees approach • Chronic Pain as a Long Term Condition (LTC) • LTC organisational structure • Chronic Pain programme • Chronic Pain - Health Improvement Team (HIT)

29. Joint Strategic Needs Assessment • Affects 1 in 3 people,104,817 adults in Kirklees • Pain - worst impact on health function, esp. physical function, 20% did no physical activity • People 65 > - 31% experienced pain over past year; • People < 65 - 46% experienced pain esp. women. • Poor sleep 1 in 3 • Depressed 1 in 2 • More likely to have heart disease, diabetes, stroke • 75% overweight or obese, • Linked to low income • Impact on carers – many have chronic pain themselves.

30. What Happened Next • Pain recognised as a significant issue across Kirklees • Service users involved in developing a new pathway • Pain specific self management services • Review of practice in Primary Care • Medicines management guidelines • Priority for our CCG – tendering for a community based pain service • Work with secondary care specialists to develop evidence based policies for key procedures

32. What will this achieve? The following patient centred outcomes: • Reduced levels of distress and disability • Improved symptom control, physical functioning and well-being • Improved confidence to self manage their pain, medication and their health

33. Mind the gap Everyone needs skills + resources

34. Timescales • Phase 1(June 09)- experience of chronic pain, current service provision and needs for future. • Over 70 participants attended • Phase 2 (Sept 09) – presenting draft care pathway & whether it meets service user needs. • Over 25 participants attended

35. Phase 1 - key issues • More immediate action for relevant assessments / investigations. • Improved GP understanding of other support services e.g. self care programmes • Being able to see the right person at the right time • Improve waiting times for referral to Physiotherapy, O.T, pain clinics • More continuity of care with each service having an understanding about other services that can provide help • Similar service provision across PCT area. • Better patient information. • Self care as an key part of managing pain with regular access to self care resources and services

36. Chronic condition management as applied to the NHS 3. 5% case management 2. 15-25% Condition management 1. 70-80% self-management

37. LTC programme delivery group Kirklees LTC Partnership Board NHS Kirklees Strategic Development Commitee LTC HITS (Health Improvement Teams) Cardiology Pain Stroke Neurology Respiratory Self Care Diabetes & Renal Dermatology NHS Kirklees LTC Programme Delivery Group LTC Project Boards Telehealth Predictive risk WORKSTREAM Workforce capability and capacity WORKSTREAM Rehabilitation and self care WORKSTREAM Information and performance WORKSTREAM Personalised care planning LTC framework LTC Programme Dependencies End of Life Older People Intermediate care Urgent Care Medicines Mental health Management Planned care CHIK Programmes

39. LTC programme delivery group Kirklees LTC Partnership Board NHS Kirklees Strategic Development Commitee LTC HITS (Health Improvement Teams) Cardiology Pain Stroke Neurology Respiratory Self Care Diabetes & Renal Dermatology NHS Kirklees LTC Programme Delivery Group LTC Project Boards Telehealth Predictive risk WORKSTREAM Workforce capability and capacity WORKSTREAM Rehabilitation and self care WORKSTREAM Information and performance WORKSTREAM Personalised care planning LTC framework LTC Programme Dependencies End of Life Older People Intermediate care Urgent Care Medicines Mental health Management Planned care CHIK Programmes

40. Reviewing pain services • Involve services users at each stage of developing chronic pain pathway. • Patient views – needs based care pathway. • Feedback to service providers and PCT commissioners – inform care pathway

41. Engagement of service users • Recruitment – Public & Patient Involvement (PPI) database, via pain services, Expert Patient Programme (EPP) support groups • Discussion groups across Kirklees • Sessions facilitated by PPI team and Public Health • Report back to service users for comments

42. Proposed care pathway • Overall support for the proposals: • Liked patient centred approach- HNA’s and health trainer input • Improve access to GP /primary care - referral to specialist services • Want all GP’s to refer all patients to self care services • Better condition management • Improved emphasis on control via self care

43. And information + resources…..what patients need to cope More tailored information • What is wrong and prognosis • How to make most of consultations, assessment • Understand roles in self care + sources of help • Learn how to prevent further problems Information needs change over time • Ensure patient can ask for more help again, again Pathway: Oral + written inform = important as drugs, test, scan or surgery Source: Patient-focused intervention A review of the evidence Angela Coulter, Jo Ellins Picker Institute 2006

44. Key drivers now • National policy – UK • CMO report 2009 • Pain Summit 2011 www.painsummit.org.uk • British Pain Society, RCGP • Local policy – Kirklees - Bradford • Joint Strategic Needs Assessment – population needs led approach www.kirkless.nhs.uk • Scrutiny Panel for Health Inequalities agenda • Long Term Conditions + Self Care frameworks • Patient + Public Involvement • Shaping services commissioned

45. Impact of pain

46. Living with pain… and LTHC’s Coping: the efforts to deal with stressful situations that tax or exceeds one’s individual resources Lazman R Folkman S 1984. Pain coping efforts: strategies to cope with or deal with, minimise pain & pain related distress + disability Keefe F J Pain 1983 Resilience - the ability to adapt in the face of adversity and continue to function ‘normally’. The sense of control people feel they have over their lives, their sense of purpose, confidence and self esteem.

47. Health needs assessment tool patients guide us…..their agenda1000 + Patients using a specific HNA tool in clinical settings Lack of fitness and energy Walking or moving about, balance or falls Pain relief or side effects or problems with current medication Understanding why my pain condition has occurred Unhelpful pattern of pacing activities Disturbed sleep Eating the right types of food Managing mood changes Relationship difficulties; with partner, family, work etc Sex life Remaining or returning to work and/or training Financial difficulties, housing or accommodation problems Concerns about carer/partner, their health or other problems Other difficulties important to change e.g. hobbies, leisure, social events etc… Circle 3 priorities for you now