"It is vital that we remember this experience and that people with long term conditions are not left behind when normality begins to resume"
Versus Arthritis’ Young People and Families service has supported people with arthritis in Scotland for over ten years. The team carry out a variety of work which includes weekend workshops, events, clinics and guidance around self management. They also play a role supporting young people who are transitioning from child to adult services.
The biggest challenge faced by the Young People and Families service has been adapting to the current environment in which social distancing has made their face to face engagement work impossible.
Rheumatology clinics have also reduced services as a result. Most clinics are now holding telephone appointment or available virtually, however Gillian Meens, Young People and Families Service Manager at Versus Arthritis, says there are limitations to this approach: “With arthritis being a physical condition, there’s an element of what you can do virtually. But your doctor can’t examine your joints in the same way. There are concerns about things like routine testing, blood testing and being on certain medications.”
To their advantage, as a service that works with young people the Young People and Families team already offered a great deal of their support online including a virtual assistant on their website, helpline, Facebook groups and Instagram account. The team have also retained their referral pathways so that young people can still be referred into the support they offer.
The challenges faced by people with arthritis will vary from person to person. Some will be anxious about having received shielding letters, which can be a frightening experience. There is also a knock-on effect on people’s mental and physical health as a result of the lockdown. However, Gillian suggests that young people with arthritis may be better placed than others to deal with the detrimental effects of isolation: “Young people with arthritis often have to cancel their physical face to face plans and will often have to be inside due to their health, some of them have really great coping mechanisms and online support networks already, which means they are probably a step ahead to some of the rest of us in having adapted and developed resilience for circumstances like this.”
To help support people to face these challenges, the Young People and Families team’s first step was to engage with the people who access their services and ask them what support would be helpful. To make sure the team were creating resources that young people were interested in using, the team pulled together a survey which has informed their activity during the current lockdown. This has led to the development of a variety of virtual services for young people including online self management workshops, catch up calls, chats, quizzes and games.
As well as this, the team has focused on offering up to date information on their website and sharing information from other relevant sources such as the British Society for Rheumatology and Scottish Paediatric & Adolescent Rheumatology Network.
Gillian believes that the COVID-19 pandemic has brought people and organisations together. There has been a shift to providing services online which has improved accessibility for a lot of people ‘who found it difficult to attend (Versus Arthritis’) face to face events.’ And Gillian hopes that changes that have been made over the last few months are sustainable as ‘there’s still going to be a need for them.’ COVID-19 has simply escalated the pace of the changes the Young People and Families team had already planned to undertake.
It is vital that this togetherness is maintained as the lockdown comes to an end. As lockdown is lifted, it is really important to remember those young people who have had to shield and self-isolate, and how things returning to ‘normal’ may have more of an impact on their physical and emotional health.
Versus Arthritis believe that, in some ways, the lockdown has made people realise how difficult it is to be isolated and at home. It’s good learning for us all, to realise the impact that it has had. There are young people within society that this is an ongoing reality for. Their condition and the difficulties that can come from it can mean that they are often isolated from friends and family for long periods of time. It is important that, when face to face services resume, these young people are as supported as ever and are not left behind in the push to get services up and running again.
It is vital that we remember this experience and that people with long term conditions are not left behind when normality begins to resume. Third sector organisations such as Versus Arthritis will play a crucial role in supporting people through this difficult transition.