MS patients being locked in the dark ages


Earlier this month the Secretary of State for Health & Social Care, Matt Hancock, listed his top three priorities for the NHS as technology, workforce, and illness prevention. The NHS is now set to receive £487m for tech investment – but the question on everyone’s lips is ‘where should this money go’? Michelle Mitchell, Chief Executive at the MS Society, shares her thoughts with Kathryn Reilly

MS Society

About a week before this announcement was made, the MS Society released a radical new report: Improving care for people with MS: the potential of data and technology. With input from experts across the fields of healthcare, policy, and technology, we unveiled a series of recommendations that, together, could transform MS services and commissioning – as well as present an important commercial opportunity for the industry.

We developed the report in response to the unacceptably slow pace of change in health and care services for people with MS. The potential of data and digital technology to improve outcomes in MS is so vast, what’s being used today barely begins to scratch the surface. Sadly, this means 100,000 people with MS in the UK are still facing needless variations in care and increasingly restricted access to services.

Jane, from Northumberland, is in her sixties and has secondary progressive MS. She said: ‘Technology has had a profound impact on how I manage my MS. A few years ago I lost the ability to use my hands, but I’ve been able to keep my independence because of access to new technology – I can operate my computer by voice control, and have another system that lets me answer the phone and lock the door. Being able to participate in society – whether that’s speaking to friends, accessing news, or doing your own shopping – should be a basic right, but I fear I’m in the minority.’ Jane is sadly right about being in the minority. So what can be done?

The story so far

Innovation is already happening across the NHS, but it can be very patchy. At Salford Royal Hospital – a Global Digital Exemplar – the MS service is already recommending voice recognition software to patients who struggle with typing, as well as integrating data from wearables to better understand how people have been doing since their last appointment. It’s our job to ensure that, wherever they live, people with MS across the UK are able to benefit from these kind of technological advances and digital change.

Immediately on the UK agenda is standardised digital care planning. This will enable healthcare professionals to share information more effectively across teams, and potentially with carers and relatives too. By creating digital health records that bridge across different settings – from the GP’s office to secondary and social care and beyond – we can help ensure that information is recorded and shared more effectively between different professionals involved in a person’s care. In the 21st century this is the bare minimum that people with MS should expect.

Another important area for expansion is video consultations, which have been especially well received by people who struggle to access health care services, such as those with mobility issues. Multiple evaluations of web-based interventions like this show people with MS welcome their convenience, especially for follow-up appointments. However they are not yet routinely provided, and require investment to correct this.

Big data: The unsung hero

Our findings show that, while a lot of MS related data is available, it’s not routinely used to develop services. Our report sets out how this data, by helping us understand hospital use by MS patients, can help determine what community services could help prevent admissions. There’s also huge potential in linking outcomes data to clinical prescribing records to better understand and ultimately personalise treatments – we just need the tools to help us do this.

App-ily ever after

Our report also found that people with MS often want to take more control of their care, and nearly everyone has the basic tools to do so – whether that’s a smartphone, tablet, or computer. At the time of writing, the NHS has just announced the launch of an app to give people access to their GP record. In our research we also found a number of existing apps that have the potential to benefit people with MS, whether it’s helping people to self-manage their condition or providing access to social or online support. Digital tools like apps can also help support physical activity, cognitive training, pain management, depression, and/or stress.

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Going forward, we want to ensure that digital technologies such as apps are independently evaluated and co-produced alongside people with MS, to ensure they properly serve the community. More effective harnessing of this technology could help people with MS stay out of hospital, and empower them to take greater control over their lives.

The future of MS care


Michelle Mitchell

In the coming months we will be launching an MS Technology Forum, which will bring together a variety of stakeholders, including people with MS, technology companies, and healthcare professionals, to deepen understanding of what could help people with MS self-manage, and work collaboratively towards this goal.

We also hope to work with partners to explore pilot projects around automated data collection on key outcomes, for example through wearable clothing, potentially combined with analysis by artificial intelligence. The aim is to help people with MS and healthcare professionals monitor the condition and success of treatments much more fully and systematically.

With everything that is going on, we hope and believe we’re on the cusp of real change and innovation in technology for MS.

What we urgently need is personalised, coordinated services that meet the complex needs of those living with the condition.

And in the words of Jane: ‘If you can get a drone to deliver a kindle, it doesn’t make sense that MS services still feel in the dark ages for so many people.’

About the author

Journalist and editor Kathryn Reilly has worked in consumer, contract and medical writing for more than 20 years.

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