2. Health Psychology Service GSTFT Sickle Cell Disease: Approaches to Pain Management Building Sustainable Services Dr Veronica ( Nicky) Thomas Consultant Health Psychologist

3. 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

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

5. 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)

6. 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

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

8. 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)

9. 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

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

11. 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 Cant make it go away- Adequate coping responses are protective/adaptive

12. 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.

13. 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.

14. 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

15. 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

16. Early Obstacles Sickle cell patients attitudes Liaison Psychiatry Staffs attitude –habitual ways of responding- Reliance on security team Diffuse medical care (on take team)

17. 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.

18. 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

20. 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)

21. 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

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

23. Integrate Cultural Variables in 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).

24. Negative Coping Strategies

25. Positive Coping Strategies

26. Confidence in Coping with Pain

27. Anxiety & Depression

28. 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?

29. 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

30. 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.

31. NICE 2009: Implications for SCD

32. The unremitting nature of the disease I – depression- M1: Yeah, again, the thing is, youre 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 doesnt give you a lot of confidence you know, its gonna come again isnt it. M1: …... Its a horrible thing to think about but death cant have as much pain as what Im going through, you know what I mean, death cant be this painful Im telling you. When Im in a crisis, death is not that painful, because I know it isnt, Ill flick this death switch anytime, because when Im alive and in that sickle pain Im telling you, you give me death, Ill have that, no trouble…

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

34. Support & Education HCP Challenges Patients life style choices Non concordance/compliance Anxiety/ Depression (Nice Guidelines) Patient centred care (empowering patients) Professional boundaries/competencies

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

36. Challenging Assumptions Whos the expert? Whose responsibility? - for improvement - medico-legal What works? - telling people??

37. 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

38. 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…Theyll 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.

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

40. THANK YOU