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

 

'Good Grief,' A new Powys bereavement support service.

People living in Mid & North Powys are now able to access a new bereavement support service thanks to Mid & North Powys Mind. We met Mary Griffiths, Development Manager for Mid & North Powys Mind and asked her to tell us more about the service.

What were the reasons for starting a bereavement support service? 

Mid & North Powys Mind were approached by people living in our community, who had previously and very successfully, delivered bereavement support, who wanted to continue to do so under the Mind umbrella.  They recognised the increased need for bereavement support because of the COVID pandemic and the need for this to be provided in a person centred way. Mid & North Powys Mind didn’t want our community to miss out on their collective 70 years of experience and we have been working hard together, over the latter half of 2021, to set up the systems and processes needed to support the service.  We are very proud to be working with a highly skilled and dedicated group of volunteers, whose passion is the wellbeing of bereaved children, young people and adults of mid and north Powys. 

What do you think the benefits of bereavement support are? 

There are many theories on why we grieve, and the many unique and different ways in which a bereavement can affect us. Research on the various grief processes has produced models to illustrate the many different ways in which people move forward from a bereavement.  There is no right or wrong way – just your way.  Bereavement support gives people, including children and young people, the opportunity to talk in confidence to someone experienced in listening to people in distress.  Some people find it a relief to talk to a stranger who can provide a safe non- judgmental environment in which to express and explore their feelings, thoughts and memories.  Someone who can explain some of the things other bereaved people  have found helpful when trying to understand and cope with their grief.   People will often say that after a bereavement they were able to talk about the death to their family and friends, but as time passed they felt they did not want to 'burden' them for fear of upsetting them.  Support can help you to feel ready to take small steps to move forward and find ways to take the memories of the person you cared for. with you.

Photo by Priscilla Du Preez on Unsplash

In what ways does bereavement support help our mental wellbeing?

The death of a loved one is something that everyone experiences at some time.  Just because you are struggling with bereavement, doesn’t mean you have a mental health problem, but it does mean you are more likely to develop one, if you don’t reach out for help and support.  Some people experience sleep disturbance, loss of appetite and energy, generally feeling low.  Feelings of isolation are experienced, particularly when support from family, friends and work colleagues begins to disappear. Grieving is not an illness but unless it is allowed to run its course, it may bring risks to physical and mental health.

Research into the effects of a bereavement on children and young people has shown  that a bereavement can have a profound effect on their mental health. Parents and teachers report the negative changes they sometimes see in the child's or young person's behaviour and in their school work.  Sometimes they struggle to express how they feel and think in words and so bereavement support, particularly for young children, can help them to express themselves through play or creative work

What support is available as part of the service?

Free support is available on a one to one basis with one of highly trained and experienced Bereavement Supporters.  Training includes over 30 hours of induction training on bereavement, additional safeguarding & mental health training, regular clinical supervisions and on-going continuing professional development.  Our team of 11 volunteers between them have over 70 years of experience supporting people of all ages with bereavement. There is no limit on the number of sessions, but we find that an average of six sessions is enough to help people get back on track.  We also have an on-going bereavement support group called ‘Good Grief’ (over zoom), where you can meet others currently struggling with similar things. 

Photo by Christin Hume on Unsplash

Is there any criteria for the bereavement?

You are welcome to get in touch with us if the bereavement was a long time ago or if it was very recent - whenever feels right for you.  It could be that you want to talk about one bereavement or the feelings you are experiencing because you have lost several loved ones from your life.  It could be about the death of a person, a pregnancy, or pet you are struggling with, or even pre-bereavement.  

Who can access the service and how do they do this? 

Anyone can access Mid & North Powys Mind’s Bereavement Support Service, from ages 4 and above, as long as you live in mid or north Powys.  Tel: 01597 824411 or email: martin@mnpmind.org.uk

There isn’t a one size fits all approach to grief or bereavement, how does your service meet the unique needs of each individual? 

The range of bereavement experiences with which people seek support reflects death in all circumstances, including violent and untimely death, suicide, drug or alcohol abuse.  Some bereavements are particularly traumatic and sudden which can result in the bereaved person feeling stigmatised, feeling shame and guilt, isolation, rejection.  The service delivers one to one support, therefore Bereavement Supporters are able to tailor their approach to uniquely match the needs of each individual. 

Some people may think that the best way to cope with grief is to have a stiff upper lip, what are your thoughts on this?

Many Western societies have a tendency to believe that showing emotion is a character weakness when it is simply a normal human response to loss. If you have not experienced a bereavement of someone you cared about, there can be a belief that grief is something you can easily get over easily and quickly.  Sometimes sheer determination will get you through but everyone needs a little help sometimes and there is absolutely no shame in asking for that help.  If you are struggling with grief, do contact us.  Many people are surprised by how much better they feel with the opportunity to talk to someone.

Is there any advice you would give to someone who isn’t sure about coming for support? 

Because each person's experience of grief is unique it can help you to talk to someone who is non-judgmental, and who can offer you the opportunity to begin to understand your grief and work with you to help you find ideas on what can help.

Some people find that having just one session is all they need to help themselves. There is no expectation that you may need more than one session.

Do you work closely with any other services in Powys or signpost to organisations who might also be able to help?

Yes absolutely.  That is an integral part of what we do. We want people to get the best help possible and by working together and signposting to other third sector organisations, depending on the needs of the person, is the best way to do this. Bereavement Supporters also have access to a wide range of wellbeing and mental health support, available through ‘Mid & North Powys Mind.’

Are there any barriers that might prevent people from accessing your support and how do you work to overcome those?

Coming forward and asking for help is often the hardest thing.  You are welcome to call us and talk it through, there is no obligation and the service is entirely confidential.  

We also deliver informative talks about bereavement for local groups across Montgomeryshire, so if you are interested in this, do get in touch. 

Are there particular issues which arise in rural areas like Powys with bereavement support?

Powys is such a rural County and this can make it hard for people to access services, for all sorts of different reasons.   Being physically isolated from family and friends can also cause feelings of isolation just when support is most needed. That is why we offer bereavement support face to face in people's homes, a neutral venue, over the phone or zoom, whatever suits the needs of the person.  Support can also be delivered during the day or evening. 

What impact do you think COVID has had on bereavement support services?

Much support has moved to on-line only delivery because of COVID, but possible future lockdowns permitting, we will deliver support in the best way to suit the needs of the person.  Be that on zoom, face to face or by phone. 

Many people haven’t been able to grieve in the usual way, what do you think the effects of this are? 

Many people have been affected by bereavement during the pandemic and have found it very difficult to access timely bereavement support in our area.  The normal bereavement process of coming to terms with a death, has been made much more difficult by fewer opportunities to visit loved ones; both before and after death.  Feelings of guilt and anger can be common reactions to grief, particularly when your experience of a bereavement has been made even more difficult as a result of the social distancing restrictions placed on people. Many of the things that help are still limited - spending time with loved ones and returning to social and physical activities.

What three top tips would you offer to support someone with grief?

Friends, family, work colleagues, school friends may want to help you but they don't know how.  You can help by explaining how they can support you.  Perhaps you may want them just to listen to how you are feeling, or share memories of the person who has died with them.  Birthdays, anniversaries and holidays can be difficult times.  Talking to friends or family in advance will help you to plan in advance how you want to spend the day.

Grieving cannot be hurried and so try to be kind to yourself by eating well, and if your sleep is disturbed, try to give yourself time to rest each day.  Be kind to yourself.

Ask for help if you need it.  If you are struggling with your feelings or thoughts because of a bereavement, you can seek support from either your G.P., or from an organisation which can offer you bereavement support, such as ‘Mid and North Powys Mind.’

Photo by Randalyn Hill on Unsplash