MS Awareness Week - FACETS programme

Date: 21 April 2021

MS patient Simon

After being diagnosed in 2001, Simon Millard has been living with multiple sclerosis (MS) for 20 years, and has had a self-confessed ‘amazing innings’.

“I was officially diagnosed at the age of 27 with relapsing- remitting MS after having what we now know were two MS episodes over the previous two years. Over the next 18 or so years, I didn’t experience any really significant issues. I had occasional episodes, every 18 months or so, mainly optical problems, but I was able to balance my diagnosis with living my life, I even went travelling round the world for six months straight after diagnosis,” said Simon.

Two years ago, Simon noticed things started to change and experienced two significant MS episodes.

“In March 2019 I had an episode where I lost my balance badly for a period of time, and then in September 2019 I lost the use of the fine motor control in my left hand. It returned but I still have an odd sensation. Since then, I’ve noticed my mobility and cognition have started to be affected more and more, particularly my balance. Fatigue is also a major symptom of MS and this started to increasingly affect me.”

Simon, 46, joined the first virtual FACETS programme at The Walton Centre in early 2021 to look at how he could manage his fatigue.

“Initially I was reticent, but the course has been outstanding. For me as a person, it was just what I  needed, seeing that there are other people going through the same experiences and that I’m not alone in dealing with it. We’ve all got different coping strategies and to be able to voice our thoughts, look at different options for dealing with it and think about new ideas was immensely positive.

“The FACETS programme has also enabled me to understand the importance of accepting my limitations and be open with people about it, particularly the hidden impacts of MS. I’m a very driven person, and people simply knowing I have multiple sclerosis is not what’s important, it’s being able to explain how it might affect what I’m doing and what I’m putting in place to overcome that.”

With a wife, two daughters, and a senior role at the Bank of America, Simon has had a busy pandemic but he’s looking forward to getting back to increased normality.

“I can’t wait to get back into the office; I’m a people person and I’m really looking forward to that social interaction and being around my colleagues. As my condition becomes more and more debilitating, that makes the social interaction more important to me,” Simon said.

“Taking part in the FACETS programme online rather than in person was an understandable effect of the changing face of healthcare due to COVID-19 but once restrictions ease I will be back at The Walton Centre. I’m currently on six-monthly drug infusions which hopefully lengthen the time between episodes and reduce the severity. We haven’t taken this step until now, as my episodes were so far apart and weren’t that significant. But, the last two episodes were step changes so my consultant, Dr Martin Wilson, started me on this course of treatment.

“I can’t speak highly enough of my experience at The Walton Centre, I feel like they’re not just treating my condition but the impact it has, and could have, on me, my family and my life and how we can manage that all together.”

Self-managing fatigue with the FACETS programme

As the UK’s only specialist Trust dedicated to providing comprehensive neurology, neurosurgery, spinal and pain management services, The Walton Centre has one of the biggest Multiple Sclerosis services in the country.

To mark MS Awareness Week, we speak to Fiona Roberts, a Senior Occupational Therapist at The Walton Centre, working in the Multiple Sclerosis team. Two Occupational Therapists have been running the FACETS programme for the past seven years, supporting patients to learn how to self-manage fatigue.

“One of the most significant symptoms of multiple sclerosis is fatigue. This FACETS programme, which was developed by researchers at Bournemouth University and the Dorset MS Service at Poole Hospital, is a six-week manualised programme. The aim of the intervention is to help people normalise their fatigue experiences, learn helpful ways of thinking about fatigue and use available energy more effectively. It integrates elements from cognitive behavioural, social-cognitive, energy effectiveness, self-management and self-efficacy theories,” says Fiona.

The original research produced encouraging results and we have been able to replicate and build on these at The Walton Centre. It is a nonpharmacological intervention that provides benefits to patients that are able to be sustained over time.

Since 2014, the FACETS programme has been a traditional face-to-face course at The Walton Centre over six weeks with a three-month follow-up session. All of these sessions are facilitated by the Occupational Therapists, Fiona Roberts and Jennie Carter. However, the COVID-19 pandemic forced a change in process and in early 2021, following a pilot programme, the OTs ran their first virtual course.

“We weren’t sure how it would translate to a virtual setting but felt it was critical to try and move it across as fatigue is such a major symptom of MS and can have a significant impact on a patient’s life.

As part of the pilot, people who had previously attended FACETS used the virtual platform and gave us essential feedback from a patient perspective.

“The feedback has been very positive for the virtual programme and patients have really embraced the new way of doing things, as they have done for so many elements of their treatment and care. For some patients, who are struggling with accessing the Walton Centre or because of time commitments, the virtual programme has been fantastic.

“As we move through the recovery process out of the pandemic, we’re now considering running virtual courses as well as the face to face group so that we can offer the opportunity to a wider group of people with MS. We may also offer a hybrid model according to the needs of each group. It’s a positive position to be in, to enable us to offer our service according to need and preference for our patients.”

  • Summary:

    After being diagnosed in 2001, Simon Millard has been living with multiple sclerosis (MS) for 20 years, and has had a self-confessed ‘amazing innings’.