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Health Psychology Service GSTFT Sickle Cell Disease: Approaches to Pain Management Building Sustainable Services. Dr Veronica ( Nicky) Thomas Consultant Health Psychologist. Outline of Talk: Building Sustainable Services to Manage Physical Symptoms'. - PowerPoint PPT Presentation
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Health Psychology Service GSTFT
Sickle Cell Disease: Approaches to Pain Management
Building Sustainable Services
Dr Veronica ( Nicky) Thomas
Consultant Health Psychologist
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
Tertiary – KCH, Lewisham, Woolwich Dartford
Ante/post natal services; MAPPIM; community
Serious risk of harm to self/others; psychosis; psychiatric medication requested/indicated
Guy’s’ 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/Benefits
SCD Nurse practitioner
Community SCD NurseSocial 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
Patient’s Employment
Voluntary Services
6 month follow upPatient/family member
Stroke; reports memory problems
Coping with SCD; mild distress; prefer group
Psychology Pathway
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)
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
A Multi-System Disorder
• Cerebral
• Opthalmics
• Cardiovascular
• Respiratory
• Gastro-intestinal
• Musculoskeletal
• Genitourinary
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)
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
PATIENTEXPERIENCE
Expert patients
Language (descriptions of pain)
Culture (expression & beliefs & body language )
Gender/Age
Increased sensitivity touch &examinationAllodynia & hyperalgesia
Past experience of pain
Sensitive symptoms
Acute &chronicpain
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
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
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.
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.
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
Sustainable Health Psychology Service
Responses to Illness/ Beliefs & RepresentationsThe 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
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”)
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.
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
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 toolsSCD protocols/care plans HPs involvement (Indirect working with SCD team, pharmacist and other
stakeholders substance misuse specialists)
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
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
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).
Negative Coping Strategies
0
5
10
15
20
25
Baseline
Post-intervention
Positive Coping Strategies
02468
101214161820
Baseline
Post-intervention
Confidence in Coping with Pain
0
5
10
15
20
25
30
35
40
45
Baseline
Post-intervention
Anxiety & Depression
0
5
10
15
20
25
GHQ-28
Baseline
Post-intervention
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?
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
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.
NICE 2009: Implications for SCD
Depression in adults with a chronic physical health
problem
Implementing NICE guidance
2009
NICE clinical guideline XX
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…”
More Examples of Indirect Working
• Ward Support- critical incidents
• Communication and cultural awareness training
• Using MI techniques/behaviour change.
Support & Education HCP Challenges
• Patients’ life style choices
• Non concordance/compliance
• Anxiety/ Depression (Nice Guidelines)
• Patient centred care (empowering patients)
• Professional boundaries/competencies
the NSF says:
• Patient-Centred Service
• “Informed decisions”…… “ encouraging partnership”
• “to own their condition and be able to manage it”
Challenging Assumptions
• Who’s the expert?
• Whose responsibility?
- for improvement
- medico-legal
• What works?
- telling people??
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
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.”
Research- Address Needs to Sustain Service
• Neuro-psychology (silent infarcts)
• Quality of life- Collaborative research with USA
• Stigma
• Outcome inform service development, Education & Training.
THANK YOU