Psychological Self Care in Multiple Sclerosis: A Stepped Care Model

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1 Psychological Self Care in Multiple Sclerosis: A Stepped Care Model Dr Dawn Reeve Consultant Clinical Neuropsychologist Mrs Dawn Anderson Self Care Development Manager

2 Background to service evaluation Aims Introduction to the Chatsworth Service & MS group Psychological impact of MS Importance of self care agenda Selection of evidence based psychoeducation for MS Aims of the service evaluation Implement self care agenda locally Transform resource from professional to patient delivery Enable local MS group to become self-led Recruit volunteers to deliver the self-care development group Form a successful collaboration between Clinical Psychology & Selfcare services Develop a stepped model of psychological care for MS

3 Multiple Sclerosis A long-term, demyelinating, neurological condition of the central nervous system Affects 100,000 people in the UK. (MS Trust, 2012) Onset between years of age. Idiosyncratic course: variety of physical & psychological symptoms Challenge for adjustment to illness. (Dennison, Moss-Morris & Chalder, 2009).

4 Psychological Symptoms Symptom Prevalence in MS % Depression Anxiety Fatigue Cognition Suicidal intent Prevalence in General Population % Haussleiter 2009

5 Self-care Self-care is a part of daily living. It is the care taken by individuals towards their own health and wellbeing, and includes the care extended to their children, family, friends, others in neighbourhoods and local communities. (DoH, Self-care: A real choice)

6 Self Care: National Policies building block of a person-centred health service NHS Plan (DoH, 2000) reduce the demand on other services & benefit through improved health & symptom management DoH (2005) commitment to LTC DoH Our Health, Our Care, Our Say (2006) Patients are the purpose of the NHS DoH (2010)

7 Effective group resources: MS & Mood Lincoln et al., (2011) developed an adjustment group for MS and low mood. RCT (n=151) Effective reduction in psychological symptoms (GHQ-12, Hospital Anxiety and Depression Scale, Beck Depression Inventory, MS Self-efficacy and MS Impact Scale) Cost effective Humphreys, Drummond, Phillips and Lincoln (2013) Service use questionnaire & use of medication Average cost decrease of 378 per treatment participant Average cost increase of 297 per control participant. Decline of 118 per point reduction on the Beck Depression Inventory.

8 Effectiveness of lay-led programmes Barlow et al (2002) review. Minimal difference in effectiveness between lay-led and professional-led sessions. Foster et al., (2007) Positive changes in pain, fatigue and disability. Increased selfrated general health, aerobic exercise and self-efficacy, and a moderate increase in cognitive symptom management.

9 Method N=6; 2 men, 4 women. RR & 2ndary progressive Patients underwent Lincoln et al., (2011) Psychoeducation programm of 6 x 2.5 hrs: (Intro;Problem solving & target setting;worry; Gloom; Relationships & others in our lives; The future) Evaluation: Weekly questionnaires to measure level of interest, appropriateness and rate their ability to self-care 2 hour evaluation discussion Commitment to volunteering to present

10 Feedback What s missing? Illness management: pacing, coping with variability and uncertainty, MS specific difficulties: cognition and neuropathic pain (types, causes and management) were absent from the programme Initial definition of MS; diet, exercise, continence, communication, assertiveness and routine

11 Feedback Personal touch: Replace script with time for their personal experiences to be used as examples of coping Structure: The group would prefer the sessions to be flexible, allowing discussion. Carers: the group stated it may be worthwhile to have partners present at the relationships session

12 Feedback Terminology: Change gloom to feeling low miserable to what gets you down? target to aim homework to putting into practice Visuals: pictures unclear so stick to primary colours Specificity: be more MS specific regarding the information as it currently feels general for LTC

13 Feedback Quotes Topics covered were informative and useful A positive outlook and a practical approach to situation solving Techniques to relax and prioritise worry People s stories about their coping methods People do feel gloomy and it s ok. It is good to know how to deal with it and move forward Hearing other experiences

14 Feedback for improvement Make more fun with less depressing terms for things and needs simplifying. More group input and discussion. The PowerPoint was just a written list of what was said so not really needed. Thoughts / suggestions from carers or close family or friends, sometimes what is said is not what is meant.

15 Final program 1. Adjustment in MS 2. Problem solving & target setting 3. Mood: worry & feeling low 4. Specific MS difficulties 5. Relationships & others in our lives 6. The future

16 Aims achieved Dialogue with patients captured feedback & transformed package from professional to patient led 4/6 expressed an interest in volunteering Successful joint working with Self Care Team Stepped Care working supported. Psychologist to remain in consultative role with volunteers and self care manager (supervision, recruitment & materials). We are 5/6 through our first group our first patient led group! Early feedback indicates need for a manual & materials to support cognitive impairment.

17 Development of Self Care in MS Self care groups could be available to MS patients via self referral Self care groups could form part of stepped care to address the psychological needs of MS patients Pilot project & requires commissioning to continue Predicted level of need is 2 per year at a cost of 1400 per group Programme already proven as cost effective to NHS Fits in well with local PRISM agenda (Newark & Sherwood/Mansfield & Ashfield CCG)

18 Psychological Care Pathway: proposing an improved service Rehabilitation Physician / General Practitioners / MS Nurse Part of Rehabilitation Prescription Clinical Psychological Assessment Stepped Care Brief individual cognitive 1: Self care management group rehabilitation intervention 2:Specialist nurses 3:?IAPT 4: Individual Clinical Psychology (via MDTs/Community neuro team)

19 Thank you for listening

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