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