Treatment of Functional Neurological Symptoms

Workshop

Sue Humblestone Highly Specialist Occupational Therapist (Mental Health)

Jasbir Ranu Highly Specialist Occupational Therapist (Neurology)

Who are we?

Clinical Backgrounds?

What interests you in functional neurological symptoms?

What are your experiences of working with patients with FNS?

Our Aim Today Interactive workshop on working with patients with FNS

What do we mean by FNS?

Group work Themes and tips

Presentation of treatment of the inpatient MDT programme

Case study

Summary, resources and sign posting

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What are Functional Neurological Symptoms? Physical symptoms that are not compatible with an

organic disease – though can often mimic consensus understanding of neurological conditions

Not to be confused with symptoms consciously manufactured for financial or any other gain

Symptoms are related to a number of psychological and physical factors

Language used has changed over the years

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Predisposing factors

Precipitating factors

Maintaining factors

BIOLOGICAL PSYCHOLOGICAL SOCIAL

- Abnormal physiological (e.g. sleep deprivation)

- Physical pain/injury

- Minor physical illness

- Negative perceptions

- Depression/anxiety

- Panic attack

- Symptom modelling

- Life changing events

- Social stressors (e.g. work)

- Neuroplasticity

- Deconditioning

- Biological abnormalities seen in depression

- Muscle tension

- Autonomic arousal

- Pain & Fatigue

- Depression/anxiety

- Fatigue

- External locus of control

- Avoidance of symptoms

- Symptom checking

- Adaptations & aids

- Fear/avoidance of work or family responsibilities

- Welfare system

- Legal compensation

- Stigma of mental illness

- Loss of face

- Family & personal history of illness. Disease e.g. SLE, hypermobility

- Poor attachment

- Personality/coping style

- Childhood neglect

- Abuse

- Family functioning

Aetiology (Adapted from Stone 2005)

Range of impairments

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(Saifee et al 2012)

Group Work

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Questions?

1.What do we do if a patient has not been given an official diagnosis of FNS?2.What do we do if the patient does not understand the diagnosis? How do we explain it?3.What do we do if the patient does not accept the diagnosis?4.What do we do if our patient is not psychologically minded?5.How do you manage patient’s with FNS on an acute ward given LOS pressures / reduced staffing?6.Should we provide aids and adaptations?7.What strategies do we use if the patient has FNS and LD?8.What outcome measures can be used?9.Should they be referred to CNRT or CMHT?10.CBT VS Psychology input for this patient group?

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Feedback

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What do we do if a patient has not been given an official diagnosis of FNS?On an acute ward – liaise directly with neurology team and request review / diagnosis. May need review by movement disorders teamIf in community: request GP to refer for OP neurology review / diagnosis

If a clear diagnosis has not been given what could you do: Address anxiety, fatigue and pain in functionWork on small carefully graded goals/themesStick with functional goals and re-enforcement of normal movement rather than strengthening exercises Ensure the all team members working with pt have an agreed and consistent approach

What do we do if the patient does not understand the diagnosis? How do we explain it?

Ask what the patient’s understanding is

Language and education should be pitched at the patient’s level, examples are helpful such as FMRI studies.

What do we do if the patient does not accept the diagnosis?Focus on graded functional goal settingFocus on the impact of their physical symptoms on their functionCould provide them with some FNS resources to read in their own time but don’t make this your focus. Acceptance can take some time.

What do we do if our patient is not psychologically minded?As aboveInvolve family if possibleEducate that long standing changes may not be achieved if triggers and maintaining factors are not identified / worked onVideo the patient in order to demonstrate changeVideo can also be helpful to demonstrate signs of anxiety in function

How do you manage patient’s with FNS on an acute ward given LOS pressures / reduced staffing?

Provide education about the diagnosis (Neurologist must diagnose first)Goal setting:

- What is most important to the patient? - Focus on one or two goals- Provide education specific to those goals

Identify the barriers to going home

Onward referrals

Should we provide aids and adaptations?Generally unhelpful

Can unhelpfully affect illness beliefs and movement patterns

Can cause de-conditioning

Immobilisation in splints is usually very unhelpful Can cause secondary sources of pain Can draw attention to an area increased self focus symptom

exacerbation

However, sometimes issuing equipment is unavoidable (or appropriate) - In this instance:

Onward referrals can support with reduction of care package or reliance on equipment

What strategies do we use if the patient has FNS and LD? Simplify language and resources used Use both verbal and visual cues / education Record information sessions so that the patient can play them back Be as practical as possible with your intervention / make it

contextual if you can Provide feedback and encourage active reflection Involve family and care givers – provide verbal and practical

handovers Emphasis on a behavioural approach Documentation in hospital passport

What outcome measures can be used?

Canadian Model of Occupational Therapy FIM/FAM EQ-5D-5L Client centred goal setting – use the patient’s own language SMART goals can be overwhelming Berg balance, 10 metre timed walk test (Physiotherapy)

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Should they be referred to CNRT or CMHT? Depends on patient’s goals. If they are more to do with mx of anxiety,

stress, low mood, post traumatic stress etc. then follow up CMHT may be appropriate.

However if the patient’s function is primarily affected by physical disability then CNRT may be more appropriate.

Could also consider referral to IAPT for CBT / psychology or GP’s to refer for counselling.

CBT VS Psychology input for this patient group: The EB suggests that CBT is the favoured psychological therapy for this

patient group. CBT is a problem and practical solution based therapy which is helpful

for the patient group (but the patient has to be ready to use it). Many psychologists use CBT approaches in their interventions You may be limited by what is on offer in the patient’s borough

Our MDT Programme for FNS

4 week inpatient MDT programme

Takes place on a 12 bed neuropsychiatric ward 6 patients on the programme at one time

Remaining beds for patients with mental health needs in the context of a neurological condition

Pre admission clinic to assess suitability

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Our MDT Programme for FNS cont.

Weekly goal setting

Weekly wardround

3 sessions per week with each member of MDT

Home leave at the weekend

Family meeting in the final week

24 hour support from nursing team

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Our MDT Programme for FNS cont.

Recently introduced addition to pathway in the form of preparatory work ,

Group based

Guided self help

Main aims – Acceptance of diagnosis and “buy” in to approach Introduction to goal setting

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Introduction of five areas Approach ENVIRONMENT AND SOCIAL CONTEXT

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BEHAVIOUR

SYMPTOMS

FEELINGS THINKING

Case Study – Background

Pt x is a 69 year old male who was diagnosed to have Functional Neurological Symptoms

He underwent several neurological tests including, CFS inflammatory screen, MRI brain and spine which showed degenerative change only.

He was also seen by the immunology team and pain team His symptoms started in 2007 and progressed over time after

extensive investigations he was finally diagnosed with FNS in 2015

He was subsequently referred to our inpatient programme for treatment of his symptoms

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Social situation

Prior to the onset of symptoms he worked as a theatre nurse

At the time of his admission he was living in a house with his wife who worked full time

He had an upstairs existence as he was unable to manage the stairs

Wife supported with all meals and other extended activities of daily living

He mobilised very short distances indoors and had frequent falls

He was reliant on an electric power chair for outdoor mobility

Home environment set up to meet needs with adaptations23

Symptoms

Throbbing pain in hips and legs Abnormal movement pattern Reduced balance Dysarthria Right facial palsy Fluctuating mood Fatigue Frequent falls Experienced negative thoughts Altered taste

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Admission activity and performance level:

Reduced confidence with step round transfer Assistance of one needed to wash and dress in sitting Required power chair for mobility Wife supported with all meals and extended activities of

daily living Generally house bound Reduce social interaction – embarrassment Unable to fully appreciate taste of foods Altered swallow

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Treatment

Education re: FNS Established goals or themes Fatigue management education Transfers Education on transferring this on the ward Standing – function in standing Mobility – function when mobilising Anxiety – positive risk taking Skills transferred on the ward and during the weekend Community access Family meeting Follow up and dischage 26

Activities and performance post treatment

Independent and confident with all transfers (bed, chair and bath)

Independent with mobility in/out doors Independent with stairs Independent with personal care Independent with preparing a meal Independent community access on foot and public

transport Able to manage fatigue Acceptance of diagnosis Acceptance of impact anxiety

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What is the prognosis for this patient group?

Study undertaken at NHNN using patient’s treated in the in-patient MDT rehabilitation program for FNS (Demartini, et al, 2014)

Assessed at admission, discharge and 1 year follow up Patient’s reported improvements in mood and anxiety, less bothered

by somatic symptoms and neurological symptoms in general Two thirds of patient’s rated their general health as ‘better’ or ‘much

better’ at discharge and at 1 year follow up Generally see improvements in quality of life goals. Things like

return to work and changes to the use of social benefits occur less often

Prognosis cont.

What is the prognosis for this patient group?Outcomes can be variable for each patient. Illness beliefs can predict outcome

Best predictors of poor outcome are:Expectation of non-recovery (my symptoms are likely to be permanent not temporary)Non attribution of symptoms to psychological factors (Sharpe et al 2010)Curative response to placebo treatment (Edwards et al 2011)Jumping to conclusions / vulnerable to false beliefs e.g. pain = damage (Parees 2012)

Tips

MDT communication: Good MDT working is key

Minimise ‘team splitting’ Likely to be involved with a number of health professionals

(Neurologist, GP, OT, CBT, Psychiatry, Psychology) – find out who they are:

Gather good history before seeing patient

Share goals / treatment plans If possible, arrange an MDT meeting for complex patient’s – may be

time consuming but likely to save time in future / better outcome for pt. Consider holding a family meeting Write a comprehensive discharge report and Cc to all involved. Provide a written and verbal handover to ongoing treating teams

Tips cont.…

Language: The use of language is key. Avoid language such as:‘your not’ rather than ‘your leg etc.’‘by now we would expect you to be able to…..’Try not to minimise their symptoms as they are distressing to the patient

Gauge your approach carefully, build good rapport before challenging e.g. when symptoms are present / not presentConsider the timing of delivery of your feedback and the method to which you do so

It is helpful to identify maintaining factors and explore them after you develop rapport to see if things are changeableIdentify their key motivating factors

Summary cont.

Patient’s are likely to do better in rehab if they (from our experience):

Are accepting of the diagnosis and are motivated to make change

Have limited maintaining factors

If they are working or have structure and routine in their lives

If they have small children

The F word

Resources Cont.… Stone J & Edwards M (2012) Trick or treat? Showing patients with functional

(psychogenic) motor symptoms their physical signs. Neurology 79:282-84.

Nielsen, G et al (2014). Physiotherapy for functional motor disorders: a consensus recommendation. http://innp.bmj.com/ (available on open access)

For further information on non epileptic attacks disorders

Website: www.neadtrust.co.uk www.nonepilepticattacks.info

Functional Neurological Forum www.fnforum.org/ (forum for AHP’s who have a special interest in FNS /

gain support from peers) Neruosymptoms.org

References

Anderson KE, Gruber-Baldini AL, Vaughan CG et al (2007) Impact of psychogenic movement disorders versus Parkinson's on disability, Quality of life and psychopathology. Movement disorders 22:2204-09

Abbey SE et al (1987) Comprehensive management of persistent somatization: an innovative inpatient program. Psychotherapy & Psychosomatics, 1987, vol./is. 48/1-

4(110-5) Acker S (2009) Occupational therapy should be part of conversion disorder treatment... "Treatment of

conversion disorder: a clinical and holistic approach", Journal of Psychosocial Nursing & Mental Health Services August 2009, Vol 47, No. 8, pp. 42-49.

Carson et al (2003) The outcome of neurology outpatients with medically unexplained symptoms: a prospective cohort study, JNNP 74:897-900

Chris Williams et al (2011) Overcoming functional neurological symptoms; A 5 areas

approach. Hodder Arnold David J Kruper (2013) Somatic Symptoms Criteria in DSM-5 Improve Diagnosis, Care. http://www.huffingtonpost.com/david-j-kupfer-md/dsm- 5_b_2648990.html Crimlisk HL, Bhatia K, Cope H et al (1998). Slater revisited: a 6 year follow up study of patients with

medically unexplained motor symptoms. BMJ 316. Foley G (2008) Occupational therapy in progressive neurology: a rehabilitative approach. British Journal

of Occupational Therapy, 71(7),308-310. Jain S, Kings J, Playford ED (2005) Occupational therapy for people with progressive neurological

disorders: unpacking the black box. British Journal of Occupational Therapy, 68(3), 125-30. Klein MJ, Kewman DG, Sayama M (1986) Behaviour modification of abnormal gait and chronic pain

secondary to somatisation disorder. Archives of Physical Medicine & Rehabilitation, February 1985, vol./is. 66/2(119-22)

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References

Law, M. et al (2005) Canadian Occupational Performance Measure (4th edn.) Ottawa: CAOT Publications ACE

Mackintosh, S. (2009) Functional Independence Measure, Australian Journal of Physiotherapy. 55 pp. 65 Nielsen G, Stone J, Mark E (2013) Physiotherapy for functional (psychogenic) motor symptoms: A

systematic review. Journal of psychosomatic research 75 (2013) 93-102 Paget J, Rigby H (1996) - Symptom elaboration and head injury: a case study. New Zealand Journal of Occupational Therapy, 01 June vol./is. 47/2 Pfeiffer, Ernst, von Moers, Arpad (2000) Camptocormia in an adolescent. Journal of the American Academy of Child & Adolescent Psychiatry, 39/8 Rosebush PI, Mazurek MF (2011) Treatment of conversion disorder in the 21st century: have we moved beyond the couch?. Current Treatment Options in Neurology, June 2011, vol./is. 13/3(255-66), 1092-8480;1534-3138 Saife et al (2012) Inpatient treatment of functional motor symptoms: A long-term follow up study,

Journal of neurology Sep;259(9):1958-63 Stone J, Wojcik W, Durrance D, et al.(2002) What should we say to patients with symptoms

unexplained by disease? The ‘‘number needed to offend’’. BMJ 325:1449–50. Stone, J., Carson, A., Sharpe, M. (2005) Functional symptoms and signs in neurology: Assessment and diagnosis. Journal of Neurology, neurosurgery and psychiatry 76;2-12

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References

Stone, J., Carson, A., Sharpe, M. (2005) Functional symptoms in neurology management, Journal of Neurology, Neurosurgery and Psychiatry 76 (Suppl. 1) pp. 13-21 Stone et al (2009) Frequency of unexplained neurological symptoms (UNS), BRAIN 132; 2878–2888 Stone et al (2010) Issues for DSM-5: Conversion Disorder The American Journal of psychiatry 167:626-627 Stone J and Edwards M (2012) Trick or treat?: Showing patients with functional (psychogenic) motor symptoms their physical signs Neurology 79;282 The Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM–5; (2013) American Psychiatric

Association Townsend, E.A., Polatajko, H.J. (2007) Enabling occupation II: advancing an occupational therapy vision

for health, well-being, and justice through occupation. Ottawa: CAOT Publications ACE Turner-Stokes L, et al (1999) The UK FIM+FAM: Development and evaluation. Clinical Rehabilitation. 13 pp. 277-287 T. A. Saifee et al (2012) Inpatient treatment of functional motor symptoms: A long- term follow-up study.

Journal of Neurology;259:1958–63.

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