An unexpected journey : Learning from the experts

Purpose

To reflect strategic drivers, the project's aims were to support self management; reduce the impact of fatigue, and support individuals to lead active, healthy and fulfilling lives

Evaluation revealed some surprising results,
leading the authors on a journey of discovery relating to the true meaning of 'person-centredness.'
We realised that we had merely 'consulted patients'
rather than striving for 'partnership working' and ultimately promoting 'citizen power' in order to improve personal outcomes.
Learning point 1.
Listen to the experts, i.e. the patients, when evaluating and designing services.
This project has resulted in a transformational
review of our service delivery model.

Approach

Five education groups were carried out over 12 months delivering a variety of educational strategies to enhance self management. A flexible delivery approach was designed to increase choice and fit around commitments such as work and childcare.

A range of outcome measures, including qualitative reports, were designed to elicit how we might further enhance the quality of our service. Carers were given the opportunity to attend one session. Outcome measures were applied to reflect the aims of the project. Qualitative feedback was also sought from participants.

Outcomes

Results highlighted several key areas:

Carers reportedly found their session helpful, commenting positively on how their session increased knowledge and confidence in their ability to support their loved one. Participants, however, reported that although they found the education around self management strategies useful, there was minimal change in fatigue levels.

Open ended questioning revealed that the biggest value of the group was peer support, creating an opportunity to work in partnership to build assets within communities, promote sustainability, empower individuals and potentially reduce demand on NHS services. Rather than a structured programme, participants felt the biggest impact the team could have would be to share our expertise with other health care providers to enable them to provide timely fatigue management advice.

Most significantly, the results from the qualitative data were a serendipitous learning opportunity, inspiring us to reflect on how “person-centred” we had been, encouraging us to embark on a journey to discover how we might fully capitalise on our learning to become truly person-centred. We realised that we had merely 'consulted patients' rather than striving for 'partnership working' and ultimately promoting 'citizen power' in order to improve personal outcomes.

As a result of this learning, a more flexible service approach to energy management in neurological conditions is required to better consider individualised needs and goals. Education and resources for primary care clinicians are vital to engage and empower people living with neurological fatigue at the earliest possible stage in their journey. Evaluation revealed some surprising results, leading the authors on a journey of discovery relating to the true meaning of 'person-centredness.'

Cost and savings

Project cost to set up & run was £7300

Predicted savings as new flexible model of service delivery with patient and clinical resources will enable more people with fatigue to be supported in community and not all will require input from our specialist service. Increasing use of digital health options will enable savings to patients in terms of travel and time.

Implications

This project has resulted in a transformational review of our service delivery model. We have acknowledged the need for timely early intervention out with specialist services and that a more flexible personalised approach to manage fatigue is required to maximise outcomes in this population.

Top three learning points

  1. Listen to the experts, i.e. the patients, when evaluating and designing services.
  2. One size does not fit all i.e. a more personalised approach to service delivery can provide improved quality of outcomes.
  3. Do not be fearful of sharing skills and relinquishing expertise.

Fund acknowledgements

Grateful thanks to Edinburgh and Lothian Health Foundation who awarded the grant which enabled this development work to be undertaken.

Additional notes

This work was presented at Physiotherapy UK 2019.

Please see the attached Innovations poster below. 

 

For further information about this work please contact Katie Wilkie.

 

 

References:

1. The Modern Outpatient: A Collaborative Approach 2017-2020 https://www.gov.scot/publications/modern-outpatient-collaborative-appro…

2. Scottish Government and Alliance Scotland Gaun Yerself -The Self Management Strategy for Scotland, 2008

3. Takahashi k, Kamide N, Fukuda M. Impact of Fatigue on Quality of Life in People With Parkinson’s Disease. American Journal of Occupational Therapy, 2017 July, Vol. 71

4. Salomè A, D’Elia T, Franchini G, Santilli V, Paolucci T. Occupational Therapy in Fatigue Management in Multiple Sclerosis: An Umbrella Review. Multiple Sclerosis International, 2019 March

5. Fisk JD, Ritvo PG, Ross L, Haase DA, Marrie TJ, Schlech WF. Measuring the functional impact of fatigue: initial validation of the fatigue impact scale. Clinical Journal of Infectious Diseases. 1994 January. Vol 18 (1)