Living Well with Cymru Versus Arthritis

We had the pleasure of recently meeting Zoe and Deb from Cymru Versus Arthritis and wanted to learn more about living well with arthritis, a musculoskeletal or related conditions. They kindly agreed to meeting up and provided some really interesting information in response to our questions. If you, or someone you know is living with a musculoskeletal condition, read on to discover the wealth of information, support and advice on offer. 

Tell us about Versus Arthritis and how it started.

Versus Arthritis was created in 2018 following the merger of two of the UK’s largest arthritis charities - Arthritis Research UK and Arthritis Care.

Cymru Versus Arthritis wants to make sure that people with arthritis in Wales have the support and information they need to live well with their condition, and to ensure that their needs are a priority with policymakers in Wales.

We offer a wide range of support across Wales to adults, young people and families. These include free information leaflets and booklets, local support and activity groups, online information sessions and self-management courses (e.g. yoga, Tai Chi, Pilates) and access to a wide range of self-help resources. People can also receive support, advice and connect with others via our free Helpline and online community.

There are a wide range of FREE booklets available from the website www.versusarthritis.org

There are 100+ conditions that come under the umbrella of ‘arthritis’.  Are some of those more common than others?

The word ‘arthritis’ is used to describe pain, swelling and stiffness in a joint or joints.  It comes from 2 words - ‘arthr’ being a prefix meaning ‘joint’ or ‘jointed’ and ‘itis’ denoting ‘inflammation’.

Arthritis isn’t a single condition but several different types, and it can affect people of all ages – children and teenagers included.

The most common type of arthritis is osteoarthritis, which can affect any joint in the body. It’s most likely to affect the joints that bear most of our weight or we use a lot in everyday life e.g. knees, hands, hips, and back.  It is more common in women, and usually affects people from the age of 45+.

Keeping active will help you maintain a healthy weight, and this will reduce the pressure on your joints. Doing regular exercise will keep muscles around a joint strong, and this will help to support and stabilise a joint affected by osteoarthritis.

Gout is a type of inflammatory arthritis that can cause painful swelling in joints. Affected joints can become red and hot. The skin may also look shiny and can peel.

Rheumatoid arthritis is a type of inflammatory arthritis, known as an auto-immune condition. The immune system is the body’s natural self-defence system, and it protects us from infections and illness. When someone has an auto-immune condition, the body’s immune system mistakenly attacks the body’s healthy tissues, such as the joints, causing inflammation.

Spondyloarthritis is a word used to describe a number of conditions that cause pain and swelling, mainly around the joints of the spine, such as psoriatic arthritis which is an auto-immune condition, and ankylosing spondylitis.

If someone is diagnosed with inflammatory arthritis before their 16^th birthday, this is called Juvenile idiopathic arthritis (JIA).

There are other conditions that have similar symptoms to arthritis, such as lupus, fibromyalgia, polymyalgia rheumatica (PMR).

What is the most common issue facing people with arthritis, a musculoskeletal or related condition? What support can you provide to support people with this?

Some of the common issues facing people with arthritis or a MSK condition are pain, fatigue, isolation, difficulties with mobility, and a lack of awareness and understanding from others.

Our info sessions, self-management courses, booklets, helpline and online community can all help people to live well with their condition through knowledge, advice, support and meeting others with similar conditions.  More importantly, our local support and activity groups throughout Powys can help people to connect with others face to face, providing opportunities for gentle exercise, peer support and fun, which can help on a number of levels. 

Local support group in Montgomery, taking part in a seated Pilates session

Approximately what percentage of people in Powys are living with arthritis, a musculoskeletal or related condition?  

Around 10 million people in the UK are thought to have arthritis, with approx. 970,000 of these being in Wales.

Are there any early warning signs or common symptoms that people can look out for or monitor?

It’s common to have aches and pains in your muscles and joints from time to time, especially if you take part in strenuous work or exercise.

Our advice is that if you have persistent symptoms e.g. swelling or stiffness that you can’t explain and doesn't go away in a few days, if it becomes painful to touch your joints, and if the symptoms are affecting your daily life, you should see a doctor.  The earlier you get a diagnosis and start the right type of treatment, the better the outcome will be.

What barriers might prevent people from accessing your services and how do you work to overcome those?

People not knowing about the support we have can offer!  So it’s fantastic to be featured in this blog to raise awareness of the work we do and how people can contact us - thank you!

Our CWTCH Cymru project is Wales-wide, and people are welcome to access their nearest support group, no matter where they are based.  As well as local support and activity groups, we provide online information and exercise sessions.  People can also access self-help resources through our website: www.versusarthritis.org and YouTube channel: https://www.youtube.com/versusarthritis  

Let's move with Leon is a 12 week programme
of 30 minute movement sessions,
presented by fitness expert Leon Wormley. 

We’re also happy to provide support over the phone or send information to people, if they don’t have access to the internet or aren’t confident in using it.

Are there particular issues which arise in rural areas like Powys for people with arthritis, a musculoskeletal or related conditions?

Powys is such an elongated rural county that often people’s nearest support may be over the border so we try to ensure a joined up approach to accessing our services, by working closely with colleagues in neighbouring counties.

We also appreciate that not all parts of Powys have good internet connection so we always try to have a mix of face-to-face and online options, wherever possible.

There are many organisations and charities who offer support across Powys – the trick is knowing about them and who to contact!  Another service we try to provide is ‘signposting' people to local support by letting them know what’s available and/or referring them directly.

Is there any online support for people who aren’t able to access face to face services?

Absolutely!  When lockdowns have led to a pause in face-to-face services, we remained online.  And as things open up, we plan to continue providing a mix of face-to-face and online support, as we appreciate that people can’t always make it to a local group e.g. due to time, caring responsibilities, feeling unwell or lack of transport.  It’s also worth noting that the Versus Arthritis website, Helpline and online community are always available.

In Powys, we’ve held online support groups and info sessions from various organisations.  Most recently, we’ve had talks from a local Occupational Therapist on Hand Therapy, and our Physical Activity Team about the free exercise resources available on our website: www.versusarthritis.org and YouTube channel: https://www.youtube.com/versusarthritis 

Alongside these and to help encourage people to keep moving, we’ve run free online exercise series offering seated yoga, Tai Chi and Pilates to people with arthritis, a MSK or related condition. They’ve been very popular and with limited places, they get full very quickly!

What is the most valuable thing you have learnt since becoming service coordinators for Powys?

It was surprising to learn about the large number of people who are affected by arthritis or a related condition, and the fact that there is no lower age limit.  Arthritis is traditionally thought of as something an ‘older person’ may develop but it can occur in very young children - this is known as Juvenile Idiopathic Arthritis (JIA).

On a positive note, it’s also good to have learnt that there is a large amount of support available to people throughout Powys, which can offer help, information and advice in a variety of ways.  Every one of us is individual and has different needs, so an important part of our work is trying to find ways to help people to live well with their condition and focus on what they can do, rather than what they can’t.

What is the most challenging / rewarding aspect of your work?

We try to get out and about into communities whenever we can to provide info and support.  The people we meet, the inspirational stories we hear and some of the feedback we receive, always makes a busy day at work worthwhile. 

The challenge here is that our roles are part time so there never seem to be enough hours in the week!  That said, we are supported by some fantastic volunteers, who really go the extra mile to provide support in their local area.

Keep an eye out for us at local venues - or ask us to your local group!  

Information Day at Knighton Community Centre

If you had a magic wand and could change one thing about your service, what would it be?

We’d like it if COVID wouldn’t keep stopping our face-to-face groups!  These can be such a lifeline to people, allowing them to speak to others who understand what it’s like to live with a long-term condition.

Having more time and resources to set-up local groups and support options for people across Powys would be another, and also more volunteers to lead these groups, as having a local person really helps bring a sense of belonging to the group.

We’re always on the lookout for volunteers so if you have some spare time and want to make a difference in shaping local services in your area, please contact: walessupport@versusarthritis.org

If you have a few hours each month to spare and would like to help
run a local group, then please get on touch we'd love to hear from you. 

Do you have one top tip, or piece of advice about living well with arthritis, a musculoskeletal or related conditions?

Whilst having a good understanding of your condition will help you know about your treatment options, and whilst exercise and other self-management methods are important. Positive thinking will always go a long way to helping.

Try to adapt your thinking or how you do things to continue doing what you enjoy. Focus on what you can do, as opposed to what you can’t.  If you used to play football but are finding it difficult – why not consider walking football?  If you like cooking or baking but are finding it difficult to hold items or open tins – why not find out what kitchen aids can help you?

There are many things you can do to help manage your symptoms. You might not always feel like exercising if you have arthritis and you might be worried that it will make your pain or condition worse. However, exercise can make symptoms such as pain and swelling better. There are several reasons why this is the case:

•     Your muscles will become stronger, providing better support to the joint.

•     Your joints will become supple and less likely to become stiff.

•     Your joints will be able to maintain their range of movement.

•     Improvement in your overall health and fitness can help you maintain a healthy weight.

•     Exercising regularly can help you get good sleep, which can help the body repair itself.

•     Exercise leads to the release of chemicals in the body called endorphins. These are painkillers produced naturally by the body. Releasing them into the blood through exercise can make you feel good.

People usually find that low-impact exercise is best e.g. swimming, cycling, brisk walking, yoga, Tai Chi and Pilates are some options to consider.

So our TOP TIP would be - Find something you enjoy so that you keep doing it!

If you’d like to contact your local Coordinator, you’ll find their details below:

Zoe Thomas                                                                    Deborah Morris

Service Coordinator - South Powys                            Service Coordinator - North Powys

Cydlynydd Gwasanaeth – De Powys                           Cydlynydd Gwasanaeth – Gogledd Powys

z.thomas@versusarthritis.org                                    d.morris@versusarthritis.org 

01792 962784 / 07895 201210                                   01938 718 988 / 07483 148 171