During the response to COVID-19, there has been a transformation in the delivery of health and care, changing the way services operate in a very short space of time.

Change that was planned to take several years to transition has been implemented in many cases overnight. These changes have largely centred around technology being used to support patients and staff in the delivery of care. As these changes become embedded in the future delivery of health and care and are more widely accepted, we feel strongly that it is important that the voice and needs of the dystonia community are met.

A recent piece of work to this end, was our involvement a recent report on digital access to care launched by National Voices, the leading coalition of health and social care charities in England. The report 'Unlocking the Digital Front Door - Keys to inclusive healthcare' explores how the move to remote service models impacted people and how the Voluntary, Community and Social Enterprise sector (VCSE) has led innovative ways to deliver healthcare and support people during the COVID-19 pandemic. The VSCE sector all over the country have played a huge role in meeting local community need over the last year. Many organisations have rapidly developed new partnerships and found creative ways to meet new needs and keep people well and we were proud to see some of our recent work highlighted in the document.

The COVID-19 pandemic meant that access to health services changed significantly, with many services switching to remote access. Through listening exercises, National Voices explored people’s experience of this rapid shift. They particularly wanted to understand how this impacted on communities who might be digitally excluded and how these barriers might be addressed. We highlighted that one size does not fit all and when the diverse access requirements of communities - even within the dystonia community itself - are not taken into account, when services are not co-designed, when the experiences of easily ignored communities are not sought and heard, new systems and changes to service provision risk exacerbating inequality further.

The work itself was funded by the NHS’ Accelerated Access Collaborative and National Voices will be taking the recommendations directly to NHS teams, capitalising on their close relationships with NHS officials and working with the system to simplify communications, prioritise ease of access and mainstream personalisation rather than digitisation. Royal Colleges of GPs and Physicians have endorsed the patient facing material on face-to-face appointments and senior NHS leaders are eager to hear the insights into patient experiences and collaborate going forward for a more consistent, inclusive, person-centred system.

We would like to take this opportunity to thank National Voices for the chance to collaborate on this piece of work. The dystonia community is so often under-represented and overlooked in health reports, so to be given the opportunity to work alongside other charities representing communities living with conditions such as diabetes and cancer and ensure the needs of those living with dystonia were equally represented was invaluable.

Published: 28th May 2021.