Our Director of Campaigns, Care and Support, Rob Burley, gives an update on shielding and what this means for individuals with muscle-wasting conditions and their families.
This week the Prime Minister signalled there will be more announcements coming in the near-future about shielding. This follows an unexpected change to guidance at the end of May for people in England who are shielding to be able to go outside once a day if they choose to, as wider lockdown measures are eased.
We saw a mixed reaction to the changes from people affected by muscle-wasting conditions. Some welcomed being able to leave their homes, but many were anxious about how safe it really was to do so and what evidence there was to update the guidance. Our statement in response to the change highlighted the confusion caused by both its suddenness and that it came just a few weeks after the Government’s own recovery strategy stated "clinically extremely vulnerable" people would have to shield for “some time yet”. This echoed the position of a number of other charities supporting a wide range of conditions, and we were quoted widely in the media including The Guardian, the Daily Mail and The Independent. Martin Hywood and I were also interviewed by BBC South for the lead story that evening.
We used this momentum as leverage to engage with the Department of Health and Social Care, and this week participated in a discussion with government policy officials and other health charities. We asked people to share their experiences with us in advance so we could raise these. Key themes that emerged were the need for clearer communication, the need for transparency around the evidence that leads to guidance changes and the growing recognition that greater nuance is needed around shielding advice as a one-size-fits-all approach simply can’t work for the 2.2 million people who are shielding for a myriad of reasons. We also highlighted the confusion that is being caused by shielding guidelines differing across the UK.
More nuanced guidance so people can make informed decisions about their own approach to shielding would certainly be welcomed by us. Our coronavirus guidance is widely read by people living with muscle-wasting conditions and by clinicians, but it is a challenge to provide advice that is suitable for all 60 different conditions. We have been helped greatly by the group of neuromuscular specialist clinicians who have given their time to help us produce the guidance and answer questions, and we will continue to work closely with them as more updates come in.
The Department of Health and Social Care has said it will involve charities and patient groups in the further development of shielding policy and we certainly hope this will be the case. We’d really like to hear about your experiences of shielding and your priorities for future guidance to help steer our input to any future engagement. Public Health Scotland is running a survey to gather the views of people who are shielding in Scotland, which is open until Sunday 14 June and shielding is an issue that we will discuss as part of the next Neurological Alliance of Scotland meeting at the end of the month.
To share your views and experiences with us, please get in touch.