Ampersand Health Hub Events: Arthritis Community Experience

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When you join the My Arthritis app, you don’t just get a great free tool for helping you manage your inflammatory arthritis, but you also become part of a community of people like you who are learning to manage their condition. You’ll have access to regular community events like Q&As with specialist clinicians. We call this our Ampersand Health Hub.

Over the past few months, we have been hosting our Ampersand Health Hub events. From Community Meetups, to Ask a Clinician Events, to conversations with Lifestyle and Wellbeing experts. We are incredibly lucky to have some of our community members who attended these events share their experiences with us. Hear their stories below. 

Alison’s Health Hub Experience

I have had PsA for 22 years and you get into a rut of thinking you know it all but sometimes you need to revisit things as there is a lot of other information and techniques available to deal with ongoing issues. I’ve attended the Ask a Clinician events and personally I find them so beneficial to me. Firstly because they provide a lot of new information, including things that are only available to clinicians rather than to patients and these things can be shared in a much more open and informative way. Also, knowing that the information is validated helps make it more relevant to you and your disease. From this event, I’ve learned a variety of different skills and techniques, and have gained a lot of information. I’ve discovered some new techniques to help with my mental health while living with a chronic disease, something that has been difficult to find elsewhere. These webinars as well as the courses on the app definitely help.

Having inflammatory arthritis can put you in a very lonely place, and often disease flare ups cause you to cancel your plans with friends and family and people who don’t have the disease, and they don’t usually understand what is going on with you or understand symptoms like fatigue. Meeting up with people who are in a similar position means that you can share your frustrations and they understand – this has been a huge benefit of the community meetups. They make you feel so much less isolated and it brings a lot of joy to meet some new friends. Doing this by Zoom opens a new window to meeting people that you wouldn’t meet in any other group – I’ve met new people from all over the country. You can gain support and information. I have met many people who feel alone through these events and I just wish more people would join in and get the support that they need. 

Clive’s Health Hub Experience

I have always believed that I should do all that I can to better understand what is happening to me with Rheumatoid Arthritis. That is exactly why I join Ampersand Health Hub events. 

The excellent Ask a Clinician events turn your worries and questions into answers! The Community Meetups seemed like a great event to begin with, but in fact – it’s a brilliant one! It’s so wonderful to share each other’s stories and experiences and we learn alot from each other. However, the finest part is the wonderful sense of wellbeing and support everyone gets from this event. I find they lift me up. No one needs to feel alone in their RA journey, you should come along and see for yourself! The whole Ampersand experience is full of great resources, the latest advice, and caring people.

Read more of Clive’s story here. 

Teresa’s Health Hub Experience

In my experience, talking things through with a fellow sufferer really helps and I became involved with Ampersand Health because I wanted to help others through the frightening early stages of the condition. Possibly a cliché, but being able to “give back” and help others with RA means that something positive has come out of me having this awful disease.

I wanted to be involved with the Community Meetup, Joint Conversation, because I thought having lived with RA for 17 years, mostly in remission, I was in a good position to support others with the condition, and give hope to those having a tough time. I am a community pharmacist by profession and patients with RA have said that they find it easier to talk to me and ask me questions knowing that I understand first hand what it’s like living with an auto-immune disease.

Hosting this event has been a very rewarding and humbling experience. I’ve enjoyed hearing how others have coped and their hints and tips for various situations. What has been really lovely is seeing how people who are newly diagnosed or who are going through a difficult patch have been supported by others in the group. There have been new attendees at each meeting as well as our “frequent fliers” and each time the groups have gelled. The meetings usually overrun because the conversation flows so easily and by the end there is a lot of laughter. There are people who started off appearing quite low at the beginning of their first session who you can see have been buoyed up by the meeting. Then in subsequent meetings they have been a lot more bubbly. That has been particularly rewarding. I even received an email from one person who said that they felt our Meet-Ups were an essential service and they had benefited greatly from them.

I have also found the Ask a Clinician events very valuable. You are able to submit questions before and during the event and ask questions during the Zoom session in the chat. It is quite informal so it puts you at ease straight away. You can not only learn from the clinicians but also from each other. Sometimes someone asks a question that you hadn’t thought of but are really grateful that they did!

I have used the My Arthritis app a lot in the past, mostly when I was shielding and had lots of time. I worked my way through the library section and read all the information in the links to the NRAS website that the library sent me to. I have since discovered that there are now links to the recordings of the Ampersand Health Hub Recordings (Ask the Clinician events) in this section too, so I will be watching the ones I wasn’t able to attend live and probably revisit the ones I could.

When I was familiarising myself with the app, I recorded my mood, sleep, exercise and symptoms every day, but as I was in remission my report was very boring! I think it will be a useful tool to record how I feel, my pain etc during a flare to remind myself, maybe compare the path of subsequent flares and have the information available during hospital review appointments. If you are well when your review appointment comes round it’s easy to forget just how bad you felt during a flare, or how long it lasted.

I worked my way through all three 14 day courses which I found interesting. The one I enjoyed the most was the General Wellbeing course which was full of interesting ideas and exercises. If anyone is struggling to get to grips with their medication I would recommend the medication course. If they are struggling with chronic symptoms such as pain or fatigue, the ACT course is worth a visit. There are also some “singles” which are short, helpful films on a variety of subjects.

My favourite part of the app now is the Newsfeed. It contains links to interesting articles around arthritis and living better with it, including latest research etc. which are from reliable sources.

There is a wealth of reliable information within the app, and as far as self-management of health conditions is concerned, reliable information = power!

In my experience, talking things through with a fellow sufferer really helps and I became involved with Ampersand Health because I wanted to help others through the frightening early stages of the condition.

Teresa

Want to join the Ampersand Health Hub community?

When you download and sign up to the My Arthritis App (it’s free!) you’ll have access to the Ask-a-Clinician events and Community Meetups Teresa and Clive have found so helpful. You’ll also get advice, resources, courses and tools to help you self-manage your arthritis and track your symptoms so you can improve your treatment plan.

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