The Adult Ability Team:An International

Perspective

A Specialist Interdisciplinary Community Based Neurological Care Team

East Staffordshire

England

Pam Bostock

Consultant Occupational Therapist – Neurology

Virgin Healthcare

Objectives of Presentation To introduce the UK health care system

To describe a unique inter-disciplinary, community based model of care for people with MS in England including roles and responsibilities of the team members,

Demonstrate integration of rehabilitation strategies into the MDT Management of MS to promote improvement, optimise function and quality of life

to discuss the concept of self management, and MS educational programmes utilised by the team

to describe a service users’ journey

To briefly consider the concepts of self- efficacy, patient activation and motivational psychological approaches

The National Health Service: Englandhttp://www.kingsfund.org.uk/projects/nhs-in-a-nutshell/how-nhs-england-now-structured

The Adult Ability Team

‘A community based interdisciplinary team of

specialist professionals working together to

Provide ongoing support,

specialist nursing and neuro-rehabilitation

to those in East Staffordshire with a

diagnosis of a Progressive Neurological

Condition’

East Staffordshire : Burton and Uttoxeter surrounded by rural communities

Philosophy of Care

Through proactive, person centred therapeutic interventions the

main purpose of the Adult Ability Team is tosupport people to self-manage their condition

as autonomously as possible, optimisingmaintenance of physical, psychological and

social functioning, by being accessiblethroughout the entire trajectory of thecondition from diagnosis to end of life,

responding both to acute episodes and longterm management

A wide range of topics is covered in consultations, encompassing physical, psychological and social issues in 19 domains

17.1%

49.5%

38.0%

20.2%

62.6%

29.3%

53.0%

25.2%

52.6%

9.3%

16.8%

27.4%

38.3%

46.7%

54.2%

67.9%

2.5%

29.9%

20.9%

0.3%

2.2%

1.9%

1.2%

5.0%

2.2%

5.0%

2.8%

6.2%

1.2%

2.8%

4.4%

6.9%

9.3%

10.9%

16.5%

0.6%

10.0%

6.9%

0.0%

0.0%

0.0%

0.0%

0.3%

0.6%

0.3%

0.0%

0.0%

0.0%0.0%

0.3%

0.3%

0.3%

0.3%

0.0%

0.0%

0.0%

0.9%

Sight and hearing

Vocation, community activities and participation

Cognition

Communication

Condition/diagnosis management and wellbeing

Swallow and nutrition

Roles, relationships & social integration

Skin

Fatigue

Respiratory & cardiac function

Spasticity

Pain

Bladder and bowel function

Mood and mental health

Care & Activities of Daily Living

Physical ability, balance and mobility

End of life

Medication management

Acute deteriorating symptoms and infection

Green

Amber

Red

NB Domains are ordered from highest to lowest proportion of interventions at amber and red level

Within MS consultations, the balance of topics is similar to other progressive Neuro-conditions, but with more focus on spasticity

and vocation

1%6%

8%10%

16%21%21%

24%25%

27%39%

45%53%

57%57%57%57%

69%79%

End of lifeRespiratory & cardiac function

CommunicationSight and hearing

SkinAcute deteriorating symptoms and infection

Swallow and nutritionSpasticity

PainCognition

Medication managementBladder and bowel function

Mood and mental healthCare & Activities of Daily Living

Vocation, community activities and participationCondition/diagnosis management and wellbeing

Roles, relationships & social integrationFatigue

Physical ability, balance and mobility

Domains covered, all staff, MS consultations only (n=173)6.7 domains covered in each consultation on average

y

The Canadian Model of Occupational Performance

Spirituality

Institutional

Physical

Cultural

Social

Self Care

Leisure

Productivity

Cognitive Affective

Physical

THIS MODEL IS ADOPTED BY ALL PROFESSIONAL STAFF NOT ONLY OT’S

ENVIRONMENT

OCCUPATION

PERSON

Adult Ability Team - Doing things differently

The Adult Ability Team PathwayPerson diagnosed with Progressive Neurological Condition. Referral to Adult Ability Team made

Referrals go to weekly allocation meeting. Allocation to most appropriate professional for clients specific needs is made

Client and referrer sent letter of acknowledgement. Appointment made with client.

Adult Ability Team MDT assessment & Profession specific assessment completed. Joint goals agreed with Service User. Treatment carried out.

Referral onto other Adult Ability Team Professionals made as appropriate. Referral onto other Key Partners i.e. Social Services / Voluntary Sector / Neurologists / Counsellor / Equipment Loans

Service / Wheelchair Service / SALT / Dietetics / Hospice Teams etc

End of Life Care Review & Reassess

Modify Treatment Plan

Discharge – Clients are not discharged unless:- If requested by client / If move out of area / If care transferred to other provider/ End of Life

AAT Service Summary:-

Person centred Assessment-and Treatment programme: (Physical/cognitive/psychological/emotional)

Restorative Approach – Rehabilitation targetingneuro impairment with goal of improving deficit /function

Compensation strategies – changing approach,techniques or behaviours to accommodate deficitsand manage difficulties

Environmental modifications Encouraging Participation Life style management Liaison with other services – statutory and voluntary

Adult Ability Team - Doing things differently

The Self Management Agenda

Department of Health (2006) defines self-management as ‘adopting coping strategies

to minimise the impact a condition may have on daily life and engaging in activities

to enable a sense of happiness and personal fulfilment’

How is the AAT addressing the Self-management agenda ?

Self management is adopted as a team philosophy,

Attempted to bring into every consultation with an individual

Educational programmes offered:

MS Newly diagnosed course

MS fatigue management programmes (Ward-Winters and FACETS)

Physio exercise and educational groups

Stress management programmes

Adult Ability Team - Doing things differently

‘Consider supervised exercise programmes involving moderate progressive resistance training and aerobic exercise to treat people with MS who have mobility problems and/or fatigue’. N.I.C.E. (2014)

FACETS: Group-based cognitive behavioral approach to

managing fatigue in people with MS

Professor Peter Thomas (Chief Investigator)Professor of HealthCare Statistics & Epidemiology School of Health and Social Care, Bournemouth University, UK

Dr Sarah ThomasSenior Research FellowSchool of Health and Social Care, Bournemouth University, UK

Dr Paula Kersten, Dr Rosie Jones (Principal Investigators)

Dr Charles Hillier, Mrs Alison Nock, Mrs Vicky Slingsby, Mrs Angela Davies Smith

Dr Colin Green, Professor Roger Baker, Professor Kate Galvin• FACETS (information reproduced with permission from the MS Society UK)

The FACETS was researched using a Pragmatic parallel arm multi-centre randomized controlled trial

Fatigue management programme + current local practice (FMP) V Current local practice

Thomas,S. Thomas,P.et al (2013)Thomas,P. Thomas,S.et al (2014)

Inclusion criteria

Diagnosis of MS Significant fatigue impacting

on daily life Ambulatory

Exclusion criteria

Non English speaking Relapse within past 3 months Recently started disease

modifying drug or anti-depressants

Cognitive deficits ruling out group participation

Under the care of psychiatrist or addiction services

The FACETS Programme1

Describe type of

fatigue, and normalise

experience(HW Activity diary/energy

measure)

2Budgeting energySleep/rest routines

(HW rest/activity/sleep

planner)

3Analysing

components of activity

(HW setting realistic goals)

4Stress –

flight/fight response. Introduce

CBT(HW thought

diary)

5Unhelpful

thought styles/Introduce core

beliefs(HW thought

challenge diary)

6 bringing it all together

Plan goals/prepare for

set backs

Rrrereproduced with permission from the MS Society UK

AAT and the Self-management agenda

What are the Educational Needs for Self-Management of symptoms for people with Multiple Sclerosis? - A Service Review (Unpublished study: Bostock,P.(2011)

Exploratory study utilising interpretive qualitative phenomenological methodology design to explore the individual experiences of managing MS symptoms - to identify future educational needs.

Semi-structured interviews / 6 participants currently using services

A thematic analysis technique was utilised for in-depth exploration of these individual narratives.

•Individualised self-management education was seen as a priority

•Group Education would be important for some

•Good quality written information was seen as important with MS Society literature being regarded as very good

•Access to electronic information was seen as needed

Choice of educational media

•A general lack of professional knowledge/awareness of the lived MS experience was noted by participants

•The importance of access to a local team for specialist support was unanimously reported

•Peer support and voluntary sector support were seen as important, but most participants did not access a local MS Branch, and peer support needed to be with people with the same condition at the same stage of their MS

Access to knowledgeable support

•There was a strong association between self-belief/self-control and self-management with a need identified for personally tailored strategies to enable successful skill acquisition

•Maintaining roles and supporting/ being supported by family was vital

•Pre diagnosis self-efficacy affected ability to self mange following diagnosis

The importance of positive attitude to feelings of self-control and self-management

•There was a general lack of knowledge about local services for both healthcare practitioners and people with MS leaving people feeling abandoned or frustrated

•Poor communication was demonstrated between specialist centres and local Heath care practitioners

•Poor referral/possible gate-keeping of clients between healthcare professionals was cited

Awareness of local services

Results of data analysis showing themes and sub-themes

Julie – a case study Julie was diagnosed in 2008, and received interventions from the MS Nurse/Physio

and Occupational Therapist 18 months later.

Julie describes how she was unaccepting of her diagnosis for at least the first 3 years, and although attended various appointments, including: regular reviews with her MS Nurse, a fatigue management educational programme ( 2hr session / week for 6 weeks), and saw physiotherapists on various occasions, at home and in clinic, she didn’t actively ‘engage’ with therapy.

Julie cites shock and denial following diagnosis for lack of engagement

What facilitated change?

Events making Julie realise she was loosing function / having a nasty fall ‘over nothing’– dropping a pan of water, not being able to walk so far

Having access to the team – drip feeding information, until ready to use – then realising how much easier it made life

Realising that fighting the fatigue caused more fatigue – so now:

‘I stopped fighting fatigue and instead - make it my friend – I go to bed with it, and wake up with it, but now I listen to it – fatigue is my mate –he goes everywhere with me, so I work with him’

So, is just having a person centred philosophy, incorporating self management into every

intervention and offering evidenced based educational programmes enough?

Is this person

READY and ABLE to self manage?

https://www.google.co.uk/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&uact=8&ved=0ahUKEwjh2_PA6c_MAhWKLsAKHb_QA-UQjRwIBw&url=http%3A%2F%2Ftheleanwayconsulting.com%2Fare-you-really-ready-to-change%2F&psig=AFQjCNFhEbj1EW8RkdgSrXcnq459VJEPAw&ust=1462978881368519

Should we be doing more to identify a persons willingness/readiness to be more autonomous in

self-management?

Acceptance and

CommitmentReadiness to change Patient

Activation

Motivational Interviewing C

BT

Patient Activation - is defined as ‘an individual’s knowledge, skill, and confidence for managing their health and health care’ (Greene,J.Hibbard,JH. et al 2005).

Mindfulness

Gillanders and Gillanders2014

Conclusion: Evidence for community based teams?

Bernard et al,(2010):

…people in receipt of services from a Community Integrated Neuro-Rehab Team tended to have improved experiences of continuity of care…..

CINRT’s helped individuals to maintain physical functioning and psycho-social well-being

The National Service Framework for long term conditions (DOH 2005):

community rehabilitation can provide cost effective services…

reduces the restrictions (individuals) experience in daily living, maintains their independence and enables social participation

N.I.C.E MS Clinical Guideline 186 (2014):

patients receiving home-based multidisciplinary showed a greater improvement in QOL indicies, Pozzilli (2002)

However, evidence also suggests there is a paucity of specialist local community services available nationally (Barr 2010)

Conclusion AAT is a model of care nationally recognised by NHS England (NHS

Improving Quality, 2014), and which meets a high percentage of the 2005 National service framework for long term conditions recommendations, as well as N.I.C.E Guidance (2014)

Service users appear happy with service provision – scoring 100% on friends and family question

Julie comments:

‘In hospital you feel like a number , I would much rather be seen in the community by a team who understands my condition – you get a personal touch and are not constantly passed around between

departments. All the staff in the team know me, and my story, and I never feel like a patient’

Self management is important as a concept and philosophy, with a wealth of evidence to support improved health and quality of life outcomes….But:

…. a few questions for you to consider in your own clinical practice

Is acceptance of diagnosis and commitment/motivation to engage in strategies to improve health important, and if so:

a. how should this be assessed?

b. How should it be incorporated into care?

c. What do we offer for those not yet willing/able to change?

Thank you for your attention

pam.bostock@nhs.net

ReferencesBarr,L.(2010) The Neurology Collection 2010 – Compendium for Commissioners.London:The Long Term Conditions Delivery Support TeamBernard,S. Aspinal,F. Gridley,K. Parker,G. (2010) Integrated services for people with long-term neurological conditions; evaluation of the impact of the National Service Framework 2010-05.Social Policy Research Unit, University of York: Research WorksDepartment of Health (2001) The expert patient: a new approach to chronic disease management for the 21st century. London: HMSODepartment of Health (2004) National Standards, Local Action, Standards for better health. London: HMSO Third Domain.Department of Health (2005) National Service Framework for Long Term Conditions. London:HMSODepartment of Health (2006a) Our health, our care, our say: a new direction for community services. London:HMSODepartment of Health (2006b) Supporting people with long term conditions to self care – A guide to developing local strategies and good practice. London:HMSODepartment of Health Care Improvement Partnership (2007) Commissioning services for people with Long Term Neurological Conditions.London:HMSODepartment of Health (2007b) Implementing care closer to home: Convenient quality care for patients. London:HMSODepartment of Health.(2008) Your health, Your Way - a guide to long term conditions and self care. London:HMSODeaprtment of Health (2009). Your health, your way. A guide to long term conditions and self care: information for healthcare professionals.London:HMSODepartment of Health (2010) Equity and Excellence – Liberating the NHS. London:HMSOGreene J, Hibbard JH, Tusler M (2005) How much do health literacy and patient activation contribute to older adults’ ability to manage their health? Washington DC: AARPGillanders,D.Gillanders,S.(2014) An Acceptance and Commitment Therapy Intervention for a Woman with Secondary Progressive Multiple Sclerosis and a History of Childhood Trauma. Neuro-Disability and PsychotherapyPozzilli C, Brunetti M, Amicosante AM, Gasperini C, Ristori G, Palmisano L et al. Home based management in multiple sclerosis: results of a randomised controlled trial. Journal of Neurology, Neurosurgery, and Psychiatry. 2002; 73(3):250-255National Institute for Health and Care Excellence (2014) Management of multiple sclerosis in primary and secondary care. Clinical guideline 186 National Clinical Guideline Centre.NHS Improving Quality:Improving Adult Rehabilitation Service in England Sharing best practice in acute and community care 11 July 2014 -http://www.nhsiq.nhs.uk/resource-search/publications/improving-adult-rehabilitation-services-in-england.aspx#sthash.oTa298d8.dpuf (accessed 16/05/2016)Thomas,S. Thomas,P.et al (2013). A pragmatic parallel arm multi-centre randomised controlled trial to assess the effectiveness and cost-effectiveness of a group-based fatigue management programme (FACETS) for people with multiple sclerosis.J Neurol Neurosurg Psychiatry.Thomas,P. Thomas,S. et al(2014).One year follow-up of a pragmatic multi-centre randomised controlled trial of a group-based fatigue management programme (FACETS) for people with multiple sclerosisBMC NeurologyBMC series ¿ open, inclusive and trusted201414:109DOI: 10.1186/1471-2377-14-109© Thomas et al.; licensee BioMed Central Ltd. 2014, accessed 27/05/2016)