By Rachel Horne
Recently a great post on Shift.ms – the social network for people with multiple sclerosis – caught my eye.
Titled “We’ve got this…” the writer “Clare80” sums up how people with MS may be better at dealing with the coronavirus outbreak – compared to those around us.
Because we live with the disease, we are used to:
being stuck in limbo and living with uncertainty
listening to our bodies
being adept at interpreting complicated, evolving and conflicting medical advice and adapting it to our own circumstances
self isolating/adopting good hygiene practices
working around constraints; sharing information and best practices
acknowledging bad things are outside our control
belonging to a community that does not rely on regular face-to-face contact
This chimes with Craig Watson, 49, who has primary-progressive MS and limited mobility. “I tell people who are panicking “Welcome to my world,” he says, from his house in Falkirk, Scotland that he shares with his wife – an NHS nurse. “I believe those of us with MS are a lot calmer. For us, it’s business-as-usual.”
While the 130,000 of us living with MS in the UK might be mentally more flexible when it comes to the COVID-19 lockdown, it is still a time of high anxiety for many of us.
Take Robby Khullar, who has MS, uses a wheelchair, and lives by himself in London. He has made the decision to undertake ‘shielding’ – self-isolating at his home for 12 weeks – even though he has not been informed to do so by the NHS. “I’m too scared to go out,” he says. “This could cost me my life.”
Not surprisingly, the UK MS Society and the MS Trust say they have received a dramatic increase in calls over the past three weeks – mostly centring around the question: “Please help me understand what’s going on,” they say.
On Shift.ms the number of questions has also increased sharply. “There’s great confusion among people living with MS and particularly those on disease-modifying treatments,” says George Pepper, chief executive of Shift.ms. “Should they continue treatment? Should they stop treatment at all? Those are the areas of most concern.”
Some of the other issues being raised – say the three charities – include:
many with MS are having significant problems accessing home-delivery of food – especially if they used to rely on a carer, friend or family member who is no longer available
some people with MS can’t be prioritised for online deliveries because they “are not considered vulnerable” and are finding the next available slot for home delivery is several weeks away
the number of items in store and online is limited – especially value-end goods – making it harder for people with MS on low incomes to buy what they need
a number of major supermarkets have introduced priority shopping hours in stores for vulnerable people, which is positive but further support is needed
should they still be working or should another member of the household be – especially if the person with MS or if the other householder is a key worker?
if the person with MS can not work from home – or their workplace isn’t able or willing to give employees adequate protection – what should they do?
who is able to claim benefits?
who should be included in the vulnerable or extremely vulnerable group – and does this hinge on whether they have received a letter from the NHS?
many are asking who should be self-isolating or shielding – and is this determined by whether or not you have received one of the 1.5 million letters from the NHS informing you to do so?
there is also confusion over who is considered vulnerable vs extremely vulnerable – and the criteria used to determine this
many MS Therapy centres are closed which will likely impact care and treatment of those with MS
some MS specialist staff are being redeployed within the NHS to treat acute patients which will likely lead to higher wait times for people with MS
many parts of the country are now struggling to deliver scheduled Tysabri on time
All we know looking forward is one certain thing: this uncertainty is likely to continue – so it is worth continually checking on the links below to get up to date information.
Shift.ms: Dominic Shadbolt does a daily round-up of MS news and interviews which is also very helpful.
MS Selfie: Prof G does a daily Q&A session