MS Variance: Empowered patients and the role of self-directed care

During the course of the two day MS Variance event, participants heard about the importance of engaging, involving, and empowering people living with MS as a key piece to ending service variation. A core view expressed during various presentations both by professionals involved in healthcare, people living with MS, and those with experience of both, the engagement of people with MS also formed one of the three topics discussed in our workshop segment towards the end of the event.

Why empowerment?

In a recent interview as part of a series looking at inspirational practice in Parkinson’s care, consultant geriatrician Dr Graham Hughes described how patient empowerment is absolutely key to a positive life experience with a long term condition.

‘Empowered people are activated to self-manage and self-direct – to find the things that make a difference to their happiness – and this is what will make a difference to their quality of life long-term.’

This is a view that was echoed consistently at the MS Variance event, with the clinical experience shared being that patients who actively engage in managing their condition do better.[caption id="attachment_3260" align="aligncenter" width="700"] George Pepper at 'MS Service Provision in the UK; the Way Forward', Birmingham November 2018[/caption]George Pepper, CEO of Shift.ms highlighted recent evidence from the Kings Fund demonstrating that those who engage in their own healthcare have better health outcomes, receive better care and incur lower costs. Georgina Carr, Head of Campaigns and External Relations at the MS Society noted the charity’s findings that the relationship between a healthcare professional and the person with MS significantly influences decision-making, and that patient access to information can drive access to services. Other comments from the floor also highlighted that patients who are educated about their condition are often more confident and better able to engage in meaningful discussions about their healthcare.Self-empowerment is an area that has been supported in many areas of life, and it is being seen in healthcare more and more. From the Patient Empowerment Project (PEP) in Leeds, to Move4Parkinson’s in the Republic of Ireland, there are examples across the UK of different ways to support, enable and empower people to take control of their conditions and their lives, all of which we can learn from.The MS Society has recently commissioned a report into how we can better use technology to support people with MS, so that they can in turn support themselves, whilst Shift.ms is currently gathering views on digital services in partnership with the NHS. From accessing information to digitally monitoring symptoms, helping people make changes in lifestyle to finding a support network, the right technology can better enable self-support.

The patient perspective

Towards the start of day 2 at the MS Variance event, George Pepper gave the patient perspective on the challenges with variance and the possible solutions. As co-founder and CEO of Shift.ms, a social network for people living with MS – or MSers, as the community refers to itself – George was ideally placed to be conduit to the voice of MSers. Echoing the same thoughts as the professional community, MSers interviewed by George were firmly in favour of empowerment, citing it as one of the best ways to improve care.George presented a number of different ways to encourage empowerment amongst the MS community, from the way a diagnosis is delivered to the use of patient networks. Giving an extreme example, he pointed out that the statements ‘You have a terminal illness’ and ‘You have a chronic condition and it’s up to you to manage it’ will be received very differently and will enable a different way of thinking.

Involving empowered MSers

An empowered patient tends to be socially mobile, actively involved in things that interest them and a key component of the positive community that can in turn help to empower others. These communities are often online and George highlighted the benefit of social networks as he spoke. With over 18,000 members in Shift-ms, he is well placed to understand the positive effect of belonging to a network, and cited studies suggesting that these social networks can positively reduce risk behaviours and ought to be used to encourage positive lifestyles and holistic self-management.He also demonstrated social networks’ benefit practically, using soundbites and film clips to share his fellow MSers’ views on current challenges in MS care. A number of those interviewed shared ideas to create parity across MS Centres with ideas such as ‘pioneers’ based in positive centres who could mentor and share good practice with those centres delivering a less optimal service.

The challenge

George summed up by outlining his top three ways to address the variance in MS services:

‘increase patient activation, promote self-advocacy, and leverage patient networks to demand change.’

These steps, challenging enough alone, rely on MSers who want to self-manage, and to engage in their care, but not all MSers feel they can be ‘activated’ whilst others may simply prefer not to be.In closing, George was clear that the path to reducing service variance lies in patient empowerment and self-management, and to do that effectively,

'We must engage the more passive MSers to be more active in managing their own condition'.

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For more information:

• Learn more about existing MS communities like Shift.ms and the MS Society online forums and see how they are already activating, such as around improving digital services
• Understand more about patient empowerment and self-management in health from the Kings Fund
• Look at different examples of empowered patients and the the activities and community around them such as the Patient Empowerment Project (PEP) and Move4Parkinson’s
• Read the interview with Dr Graham Hughes around patient empowerment in Parkinson’s
• More spotlight articles for an in-depth look at some of the key issues raised at the Variance event