MS and Employment: A Research Journey

1
MS and Employment A Research Journey

• Gail Townsend
• Buckinghamshire PCT /
• Oxford Brookes University
• The MS and Employment project is supported by a
  grant from the Multiple Sclerosis Trust

2
The first steps 2003

• The person with MS
• The MS Trust
• The Big Idea!

3
The Big Idea

• Find out what problems people with MS in the UK
  face in remaining in employment
• What is being done to help them is there some
  hidden good practice?
• Develop an intervention to support people with MS
  in employment

4
Getting started

• Expert research support to refine the idea
• Dr Jenny Butler
• Funding support
• MS Trust
• Support for Science
• Applying to be an MPhil / PhD student

5
The first project 2004 - 2006

• Employment and MS Experiences of people with
  MS and professionals in the UK
• Postal survey of MS Specialists, OTs and DEAS
• Focus groups, postal questionnaires and post
  questionnaire interviews with people with MS

6
Outcomes of the first project

• People with MS value work, but faced a variety of
  difficulties in continuing to work.
• Both the experience of people with MS and the
  report of the professionals who took part in the
  survey indicated that healthcare professionals
  offered little or limited support aimed at
  enabling people with MS to remain in work.

7
Outcomes of the first project

• Identification of areas of need
• Need to improve practice in delivering support to
  people with MS who wished to remain in work (QR6
  of the NSF-LTC)
• The toolkit concept was born!

8
Areas of need identified

• Symptom management in the workplace
• Health promotion
• Workplace issues
• Physical barriers
• Working arrangements
• People at work

9
PhD Project 2006 - present

• What is a toolkit?
• What is the underlying theoretical framework?
• More funding to find!
• More ethics!

10
What is a toolkit?

• A toolkit is one way of supporting change or
  development in a service or in practice
• A toolkit is a set of materials and information
  using a range of formats which can be used
  selectively in practice

11
Self Management the basis of the MS Workbook

• Lorig et al, Stanford University
• Expert Patient Programme
• Key self management skills
• Problem solving
• Decision making
• Resource utilisation
• Forming of a patient/health care provider
  partnership
• Taking action       
• Self Efficacy

12
Study design

• Developing the structure
• Overcoming the challenge of tackling such a
  complex topic
• Email discussion groups to refine and develop
  the toolkit
• Expert evaluation of the draft toolkit
• Piloting the toolkit in practice MS Nurses and
  OTs

13
Still travelling, but the end is in sight (sort
of)

• The reality of the journey is not so
  straightforward as it may seem.
• When I started I had no idea what the
  intervention might be, and at times it has been
  dropped altogether on detours from the map.
• Sometimes is has felt like a roller coaster, and
  at others more like Groundhog Day.

14
Then and now

• Employment and MS has a much higher profile as
  more people have taken up the challenge.
• Older and wiser, but without my naivety and
  optimism Id never have got started.

15
Acknowledgements

• All the people who have participated in the first
  and current study
• The MS Trust
• My research supervisors at Oxford Brookes
  University
• Buckinghamshire PCT and Support for Science