The organisation has put in place a number of measures to support people and keep them connected during the pandemic.
The coronavirus pandemic and lockdown has changed the way we think and forced us as a UK organisation to review and quickly reorganise how we support people affected by stroke. We have not been alone in facing such huge challenges.
In Scotland there are around 9,000 people discharged each year after a stroke. Stroke is a brain attack leaving people with varying levels of disability which shatters the lives of those affected and their families.
As a UK charity we provide specialist support, fund critical research and campaign to make sure people affected by stroke get the very best care and support to help them rebuild their lives. We wanted to be able to reach as many people affected by stroke as quickly as possible when the pandemic hit. In Scotland this meant responding to requests for help and sharing information so people knew how to access our support. There are five strands to our current support which is now under review.
Our Stroke Association Connect service is one strand. This was implemented rapidly in direct response to the pandemic across the UK. The aim was to support people being discharged after a stroke more rapidly than in normally, where stroke unit staff had been deployed to other areas. A quick and simple referral system was established to provide a phone call to those referred. The aim was to share information and signpost to relevant support. We have been working with NHS Tayside, Forth Valley and parts of Greater Glasgow and Clyde.
In addition we provide our Here for You volunteer support. Within three weeks of lockdown, we created training and support for volunteers who wanted to share their lived experience and support someone via telephone. This support can last up to 12 weeks, and is a regular call. The service connects stroke survivors and carers, by telephone to trained volunteers who themselves have had experience of stroke – directly or as a family member. We now have a growing group of volunteers in Scotland who are helping to deliver this, and we aim to continue and develop this further.
Our UK Helpline is open five full days per week and on a Saturday morning. We have taken many calls relating to stroke and coronavirus. As the calls increased in number and length, we increased capacity to meet need by training staff who might have been furloughed, as Helpline assistants.
We also provide crucial information at this time. Many of our Scottish service users have been able and willing to embrace digital forms of communication to combat the isolation brought about by social distancing restrictions. Our stroke groups have been meeting using Zoom and we have seen an increase in the numbers accessing My Stroke Guide (this link will take you away from our website). This online tool is freely available and provides a wealth of up to date information and videos about stroke as well as online community forum’s. We have worked closely with Ability Net to ensure people needing support to get online have access to the right expertise to support this.
A suite of resources specific to COVID 19 is available through our website including videos to help people keep moving and stay active at home (this link will take you away from our website). We were approached by Later Life Training who wanted to provide simple standing and seated daily ‘bites of movement’ video’s which are part of this resource. And in June we launched ‘Getting online for people with aphasia’ (this link will take you away from our website). This new tool has been produced to help people with aphasia get online, create an email account and access tools such as Skype, WhatsApp and Zoom.
The stroke research community has taken a knock as have other researchers across all disease areas. Many of our stroke researchers have been redeployed to do clinical work, resulting in projects being ‘paused’. We have been working with the Scottish Government throughout the COVID-19 pandemic; treating stroke as a medical emergency, giving guidance around social distancing and shielding and working with Chest, Heart and Stroke Scotland to develop ways of involving and people with lived experience in the Programme for Government stroke priorities.
We are interested in the views of people who have been undergoing stroke treatment and rehabilitation and the effect the pandemic has had on their experiences. A survey has been circulated across the UK to gather views and this will closed on 5 July. These results will go some way to informing us of what the care has been like and where outstanding needs lie.
We have worked to adapt our services to meet the specific demands we have identified during the pandemic. Our work will be ongoing and we are now looking to the future in order to scope out where we need to concentrate our efforts next.