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How do people with MS cope with Coronavirus?

March 26th 2020

MS Society Cymru Director Lynne Hughes highlights the impact of Covid-19 on people living with Multiple Sclerosis (MS) in Wales.

Multiple Sclerosis (MS) is an incurable neurological condition, which affects approximately 5,600 people in Wales, and more than 130,000 people in the UK.  The advice from the UK government and devolved administrations is that people living with chronic neurological conditions such as MS should be particularly careful.

The MS Society is guided by our scientific experts, the NHS and the Association of British Neurologists (ABN). Some disease modifying therapies (DMTs) which suppress the immune system can make the chance of catching an infection higher – but the risk is different for each one. Information about the different DMT’s and coronavirus can be found on the MS Society website.

The MS community in Wales is obviously anxious about the Covid-19 outbreak and the impact this will have not only for themselves but for their loved ones too – many of whom they rely on for care and support. 86 per cent of people living with MS in Wales say that friends and family provide some degree of unpaid support for practical tasks.  People with more advanced and progressive forms of MS in particular often require very significant levels of care and supervision, they are particularly worried about the impact of the virus on the social care sector.

MS particularly affects people of working age: most people are diagnosed in their thirties and forties. Employers are advised that they need to be especially careful and take extra steps for anyone in their workforce who is at increased risk from Covid-19. People living with MS tell us however that there a lack of clarity about their rights in terms of social distancing, and what happens if they are unable to work from home.

The same advice on social distancing also applies to people who care for someone with a health condition that might put them at a greater risk – this will undoubtedly place extra burden on them financially too.

Although the UK and Welsh governments have announced a range of support to help people affected financially by Covid-19, one of the biggest worries people in work still have is that the measures put in place to date may not be adequate and may cause financial insecurity, forcing many into debt and poverty.

Income levels vary by time since MS diagnosis – they are higher among those recently diagnosed and lower among those with more advanced MS. Welfare reforms have already contributed to deteriorating health as well as compounding poverty and isolation for the MS community in Wales.  In addition, people living with MS in Wales already face an inequality in access to emotional, social care and rehabilitation support; physiotherapists and continence advice that corresponds directly to income, education and employment status.

The full attention of the health and social care system is rightly focussed on dealing with the Covid-19 crisis. Prior to the outbreak, our MS specialists and nurses were under-resourced but working flat out to provide treatments, care and support to people living with MS. They are now facing unprecedented levels of calls from the MS community.

There is no doubt that we are currently in uncharted territory which will impact on many aspects of our lives. One thing is for sure is that MS Cymru will do all that we can to keep people living with and affected by MS in Wales connected, supported and informed during this time.

Social isolation and loneliness is already a significant issue for people of all ages who are living with MS in Wales. Three in five feel lonely or isolated because of their condition.  Covid-19 will serve only to add to this.

Our 18 MS support groups across Wales bring the MS community together, supporting them to remain active and independent through a range of activities from Tai Chi to choirs, yoga and pilates. We’ll ensure that our community will continue to get support using online resources and telephone befriending.  We are mindful though that up to a quarter of those who are digitally excluded in Wales are disabled people. There are many in the MS community who do not have access to digital technology nor the funds to install and maintain it. For them, online shopping and virtual connections through a period of self-isolation or quarantine are a non-starter. We’ll be working with local agencies and networks to make sure that the needs of everyone are identified and met.

Our Big Lottery-funded My MS My Rights My Choices project offers a range of support to people living with MS in Wales including applying for grants and benefits for those experiencing financial hardship; and supporting people with their employment rights.

Lynne Hughes is Director MS Cymru and a Trustee of the Bevan Foundation

Further information on the COVID-19 and MS: https://www.mssociety.org.uk/care-and-support/ms-and-coronavirus-care-and-support

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