Dr Veronica ( Nicky) Thomas Consultant Health Psychologist

1. Health Psychology Service GSTFTSickle Cell Disease: Approaches to Pain ManagementBuilding Sustainable Services Dr Veronica ( Nicky) Thomas Consultant Health Psychologist

2. Outline of Talk: Building Sustainable Services to Manage Physical Symptoms' • Role of HPS in Pain management- direct work – • Indirect work in MDT- communication/advocacy, • Pain assessment tools • Protocols/guidelines/ • Education –addressing attitudes/deficits in knowledge • Research identifying & meeting unmet need

3. Psychology Pathway Tertiary – KCH, Lewisham, Woolwich Dartford Ante/post natal services; MAPPIM; community Specialist Psychotherapy service e.g. personality disorder; eating disorder Speech & Language Therapist; Physiotherapy; Occupational Therapy Serious risk of harm to self/others; psychosis; psychiatric medication requested/indicated Hosp liaison psychiatry; CMHT; GP Asylum seeker services Follow-up 1-5 yrs Neuropsych Assessment Stroke; reports memory problems • Guy’s’ Hosp • Outpatient • St Thomas Inpatient • Members of SCD team • Self-referral • Clinics Individual Therapy (CBT – 2-20 sessions; Average 6-8) Patient/family member ASSESSMENT 6 month follow up Coping with SCD; mild distress; prefer group Support Group (10 weekly x 1.5hrs; 3 times per year) Genetic counselling. Mild distress - Client reluctant to come to hospital for psych support. Voluntary Services Social/Housing/Benefits Difficulties managing medication etc Confusion re: disease/treatments Educational Services SC Nurse Counsellor Community SCD Nurse SCD Nurse practitioner Patient’s Employment Social Worker

4. What is SCD ? • An auto-recessive inherited blood disorder • Seen in many ethnic groups Africans, Indians, Caribbean's, Arabs, and Mediterranean's. • Sickle cell trait (carrier status) offers protection in infancy against malaria • Many different types - Sickle cell anaemia (HbSS) SC disease (HbSC), SD disease (HbSD), Sickle beta-thalassaemia (HbSB)

5. Epidemiology • The most common worldwide inherited disease Most common inherited condition in UK • 300,000 – 500,000 births per year • 15,000 affected individuals • ¾ live in London • >1000 adults and 400 children attend GSTT • 320 births per year in UK

6. A Multi-System Disorder • Cerebral • Opthalmics • Cardiovascular • Respiratory • Gastro-intestinal • Musculoskeletal • Genitourinary

7. Characteristics of SC Pain • Acute pain • Unpredictable • Mild to severe • Lasts hours or days • Migrates • Waxes and wanes • As intense as post operative pain • SCD women report labor pain less in intense than crises  Chronic Pain (features throughout lifespan)

8. Vaso-occlussive crises (voc • 90% of admissions due to VOC • 40% GSTT VOC admissions < 2 days • Nearly all voc self managed in community • Seasonal factors influential • Stress is major trigger- two mechanisms • Stress affect blood vessels • Life style factors

9. Pain issues in SCD Disease Severity Variability Expert patients Language (descriptions of pain) Psychological Issues, depression, anxiety cognitive deficits Culture (expression & beliefs & body language ) Over and under reportingof pain PATIENT EXPERIENCE Gender/Age Genetic/life threatening illness Increased sensitivity touch & examination Allodynia & hyperalgesia Acute & chronic pain Stereotyping Labelling/ Drug-Addiction Sensitive symptoms Past experience of pain

10. Coping & Adjustment issues in SCD • Living with a potential life threatening illness • Coping with pain • Adjusting to symptoms & incapacities • Managing treatment options/complying with medicines • Managing emotional/social consequences • Maintaining effective relationships in /outside hospital • LTC -issues across the development – also life challenges age/stage development • Maintaining psychological wellbeing • Can’t make it go away- Adequate coping responses are protective/adaptive

11. At start of HPS 15 Years Ago • Young population -average age 25/30 • SCD patients challenging group • Lack of trust between staff and the patients SCD patients challenging group • High users of the service • Increasing isolation from society • Lack of trust between staff and the patients • First SCD team in UK to employ a psychologist.

12. Impact on health care professionals • Increasing in stigmatisation and labelling of this patient group • Increasing levels of helplessness, frustration & hostility in staff • Increasing reluctance of nursing staff to care for sickle cell patients • Increasing cost to the trust.

13. Psychological services include • Normal service part of MDT • Individual CBT and family work • Routine for screening coping strategies, pain self efficacy, depression & anxiety • 6 months follow-up • Ongoing Group support • MDT ward round s & OP Clinic • Support & Education for staff • Audit, evaluation and research

14. Sustainable Health Psychology Service Responses to Illness/ Beliefs & Representations The ways that people are affected by: • Becoming ill, • Receiving treatment, • Adjusting to long-term illness, including pain & coping • Treatment adherence. • Looking at how health & health behaviour changes over life span. HP Service is based on Needs Assessment Patient Involvement (242 NHS Act 2006 'Duty to involve‘) has been strengthened so that current legislations states: • We involve service users (patients, carers) • a)    always when planning/evaluating of services • b)    when developing and considering proposals for changes in the way services are provided • c)    when making decisions that affect the operation of those services

15. Early Obstacles • Sickle cell patients attitudes • Liaison Psychiatry • Staff’s attitude –habitual ways of responding- • Reliance on security team • Diffuse medical care (“on take team”)

16. Survey of Perceptions of Medical Practitioners • Perceived percentage of patients who are addicted to opioids? • More than 20% thought to be addicted by • 53% of ED Physicians • 23% of Hematologists • For children and adolescents, the perceived frequency of addiction was less than for adults • 9% of hematologist and 22% of ED physicians thought more than 50% of adults were addicted Shapiro, Benjamin, Payne, Heidrich, JPSM, 1997 63% of nurses believed that ‘drug addiction frequently develops ‘ among SCD patients. Pack-Mabien et al, 2001 Pseudoaddiction caused by under treatment of pain and ineffective pain coping strategies -Elander et al, 2004.

17. Pseudoaddiction: an Iatrogenic Syndrome • Abnormal behavior development as a direct consequence of inadequate pain management • Inadequate Prescription of Analgesics By the Provider • Escalation of Analgesic Demands By the Patient • A Crisis of Mistrust between the Pt. & Provider

19. Prevention of Pseudo-addiction: Effective Pain management Strategy • Treatment decisions based on MDT Assessment • Provide time contingent and Appropriate Treatment • Make adjustments for tolerance • Prevent withdrawal and Associated Pain • Taper off -orals • Use Adjuvant therapies • Use Long Acting Opioids • Use of pain assessment tools SCD protocols/care plans HPs involvement (Indirect working with SCD team, pharmacist and other stakeholders substance misuse specialists)

20. GSTT Pain Assessment Tool for Adult SCD Patients Pain Tool 1-10 pre and post analgesia Sedation Tool, Mood Tool Frequency of Observations Respiration & Nalaxone Guidance Pain Score Guidance Mood Score Guidance Sedation Score Guidance

21. Negative Automatic Thoughts Core beliefs ‘I am defective’ ‘Nobody wants me’ Triggering event Being in Hospital Vulnerability factors Early experiences SCD genetic disease Pain from 6 months old Anger/Fear of rejection/Acting Out/Pushing People Away Potentially threatening stimuli, pain, Multiple Complications Anger/Acting Out/Isolation Pain Experience Depression ‘My pain is going to last forever’ ‘Nobody cares about me’ Hyper vigilance/ selective attention Negative Automatic Thoughts reinforced by family dynamics Safety seeking behaviour A&E – hospital admissions Helplessness reinforced. Fear/Anxiety ‘I am going to die by 25’ Passive Coping Prolonged rest/massage.

22. Integrate Cultural Variablesin CBT Strong influence of family expectations West Africans • high expectations- can be beneficial but also unhelpful. Folk /Religious beliefs • bad blood; curse • can impede medical and psychological intervention (e.g.blood transfusion).

23. Negative Coping Strategies

24. Positive Coping Strategies

25. Confidence in Coping with Pain

26. Anxiety & Depression

27. SCD- A Life “Long” Illness: 15 Years Later: Sustaining services over lifetime • So our patients believe they can live normal life- to ripe old age- then what? • First time really appreciate that SCD is a Chronic illness/ body failing Treatment Issues • Complex treatment- • Cognitive problems • Informed consent/ decision making – • Palliative care- what is it?

28. Chronic Pain in Middle & Older Adult Years • Different expectations (“they got a life”) • What helped to cope maybe redundant • Avascular changes of joint- disability • Renal disease & Liver damage-failure (limitations in choice pain relief). • Non- SCD complications of aging Strokes- neuropsychological –cognitive dysfunction. • Intractable pain • Palliative care

29. Collaborative Approach to Chronic pain • Input-& SCD team • Patient consultation – mixed groups; education/communication between teams • Two pilot courses • Good outcome for all – patients completed program & felt supported; INPUT team improved confidence; SCD team increased chronic pain knowledge • Recommendations for future – e.g. ensure SCD team visibility earlier.

30. NICE 2009: Implications for SCD

31. The unremitting nature of the disease I – depression- • M1: “Yeah, again, the thing is, you’re at rock bottom, and you have to pull yourself up again, you know it [a crisis] could happen again, and half way through you pull yourself up again, you know it could happen again, so it doesn’t give you a lot of confidence you know, it’s gonna come again isn’t it.” • M1: “…... It’s a horrible thing to think about but death can’t have as much pain as what I’m going through, you know what I mean, death can’t be this painful I’m telling you. When I’m in a crisis, death is not that painful, because I know it isn’t, I’ll flick this death switch anytime, because when I’m alive and in that sickle pain I’m telling you, you give me death, I’ll have that, no trouble…”

32. More Examples of Indirect Working • Ward Support- critical incidents • Communication and cultural awareness training • Using MI techniques/behaviour change.

33. Support & EducationHCP Challenges • Patients’ life style choices • Non concordance/compliance • Anxiety/ Depression (Nice Guidelines) • Patient centred care (empowering patients) • Professional boundaries/competencies

34. the NSF says: • Patient-Centred Service • “Informed decisions”…… “ encouraging partnership” • “to own their condition and be able to manage it”

35. Challenging Assumptions • Who’s the expert? • Whose responsibility? - for improvement - medico-legal • What works? - telling people??

36. Critical aspects of communication • Language and Understanding • A common concept of CARE • Expression of Illness • Opportunities for further explorations • Creating an environment to discuss sensitive issues (priapism)/raise questions • Sharing of information

37. Hospitalisation -caring attitude?- • F1: “... everybody's so angry, everybody's so frustrated, everyone's in pain, and nobody's doing anything about it, nobody's listening to anyone's complaints, you know, it makes me feel like, you know, your life is worth nothing to them. You could drop down dead, they wouldn't care you know, another bed for somebody else.” • M5: “ The nurses are quite nice…They’ll try and help you out. You know, rub your back or try and give you one of those [drip] bags and out it in the microwave to make it heat up, so that you can put it on the pain on the arm or your leg.”

38. Research- Address Needs to Sustain Service • Neuro-psychology (silent infarcts) • Quality of life- Collaborative research with USA • Stigma • Outcome inform service development, Education & Training.

39. THANK YOU