Ireland in the Midst of Arthritis Crisis Affecting Three Quarters of a Million

New online video campaign launched to shift stereotypes at the start of National Arthritis Week

Ireland is in the midst of an arthritis crisis with three quarters of a million adults and more than 1,000 children living with it, making it the most common cause of disability nationally. That was the key message highlighted by Arthritis Ireland today to mark the start of National Arthritis Week 2014 as it launched a major new awareness campaign to shift public perceptions about the disease.

This hard-hitting online video, named Arthritis a crisis? has been launched in response to new research which found that many of the old stereotypes about arthritis remain prevalent in the public psyche today.

Watch the video here:

The two and a half minute clip tells the story of five people – children and adults – who are National Arthritis Weekliving with arthritis. It demonstrates in harrowing detail the true impact that the disease has on their daily lives and their struggle to control the condition, both physically and emotionally. With lines such as “I have arthritis. It’s my lifelong partner. I will die before it does”, the video looks to communicate exactly what it feels like to have a lifelong, incurable, chronic disease. All of the people in the video are living with arthritis, including the extras.

Arthritis Ireland CEO, John Church, said: “People with arthritis in Ireland are fed up living with the stereotype that arthritis is just a few aches and pains that just affects older people, when in fact the reality is very different. Ireland is now in the midst of an arthritis crisis. It is the single biggest cause of disability here, affecting three quarters of a million people from newborn babies right through to the elderly. This figure is expected to by 30% to over a million by the year 2030. Funds are urgently needed to address this; to invest in research to find new treatments and a cure, and to provide services to help people control this devastating disease.”

In a survey of 1,000 Irish people by Behaviour & Attitudes, it was found that those who prioritise arthritis as a cause worth supporting are a lot more likely to have direct personal experience of it, pointing to a lack of understanding amongst the general public. The research found that in particular younger adults know very little about arthritis. However, it was found that people would be much more willing to support the cause, knowing that it affects almost one million people, both young and old, and that its impact on a person’s ability to carry out normal, everyday activities causes serious levels of depression and social isolation.

Fiona Poona (44), who is one of the five main cast in the video, said: “Having lived with arthritis for the last 11 years, I know full well what suffering in pain while still looking well is all about. Trying to explain to people what it’s like to have an invisible, chronic condition is extremely difficult and very frustrating. I believe that this video will lead to people having a better understanding of what it’s like to live with arthritis.”

For anyone who would like to support our vital services. Text JOINTS to 50300 to donate €4 or you can donate online here.

Children with Arthritis Tell Conference They Are Fed Up ‘Waiting in Pain’

Arthritis Ireland Calls for Dedicated Paediatric Rheumatology Unit to Be Established Urgently

Children with arthritis today told an Arthritis Ireland press conference that they are fed WaitingInPain-47up waiting in pain and called for a dedicated fully staffed paediatric rheumatology unit to be established to enhance patient care. The calls were made at ‘Waiting in Pain’, a juvenile arthritis (JA) Children’s Conference, where it was revealed that the waiting list for children with suspected arthritis now stands at more than two years, putting children at risk of permanent joint damage.

More than 1,000 children are living with JA in Ireland today, making it as common as childhood diabetes in under 12 year olds. However, the paediatric rheumatology service at Our Lady’s Children’s Hospital, Crumlin (OLCHC) do not have a dedicated clinical unit. As well as this, there are just two consultant paediatric rheumatologists (both of whom have general medicine responsibilities also) and one HSE funded rheumatology clinical nurse specialist appointed for the entire country.

WaitingInPain-34The lack of facilities, resources and inadequate staffing levels is leading to waiting lists of more than two years for children with suspected JA. This is despite recommendations from the British Society for Paediatric and Adolescent Rheumatology (BSPAR), which states that children with suspected JA must be seen by the paediatric rheumatology team within four weeks of the referral begin made.

Speaking at Waiting in Pain, Danny DeVaal (aged 16) said: “Having been diagnosed with arthritis when I was just 7-years-old, I know just how important it is to have quick access to your rheumatologist to get the treatment you need. Pain is merely a component which contributes to a larger picture with JA. Many people cannot comprehend the daily struggle children with arthritis endure; the endless hospital appointments, and normal childhood activities we are forced to stop due to arthritis. If we are to lead normal lives, we need access to treatment within a reasonable timeframe. At the moment, we are waiting in pain and it’s not acceptable.”

Dr Orla Killeen, one of only two consultant paediatric rheumatologists in Ireland, lent herWaitingInPain-36 support to the campaign also. “Ireland has one of the lowest levels of paediatric rheumatology resources in Europe per head of population. Juvenile arthritis can be an aggressive, potentially lifelong condition that can lead to serious disability and causes intense pain for children.  Early intervention with aggressive treatment is essential to prevent juvenile arthritis extending to multiple joints and result in a more positive outcome for such children. If left untreated, it can lead to permanent muscle wastage, joint damage and deformity, not to mention the trauma that a child and its family experiences coping with such a new diagnosis. Children deserve better”.

At the conference, Arthritis Ireland released its pre-budgetary submission on paediatric rheumatology, which called for a dedicated appropriately staffed paediatric rheumatology clinical unit to be established at OLCHC with an additional consultant paediatric rheumatologist appointed including allied health professionals, along with two additional rheumatology clinical nurse specialists to reduce waiting lists and enhance patient care.

Arthritis Ireland CEO John Church said: “Children are being left in uncontrolled pain and put at risk of permanent joint damage due to a lack of resources and facilities in paediatric rheumatology in Ireland. It is vital that the recommendations contained in Arthritis Ireland’s pre-budgetary submission are adopted as a matter of urgency if waiting lists are to be reduced to the recommended levels.”

WaitingInPain-50As well as Arthritis Ireland’s campaign for better paediatric rheumatology services, the organisation provides a wide range of supports for families living with JA, including a JA helpline, pain management workshops, JA Family Day events, a JA Road Trip weekend for teenagers and a comprehensive information service.

Mr Church added: “No component of our vital JA programme receives state funding so we are heavily reliant on the support of the public to continue providing services. This JA Month, I am asking the public to make a big difference in the lives of children with arthritis by texting ‘JA’ to 50300 to donate €2.”

Click here to read our full pre-budgetary submission.

Living Well Hero: One man’s positive transformation thanks to an arthritis self-management course

Stuck in a rut. That’s exactly how Quentin Carrick found himself after he was self-managementdiagnosed with fibromyalgia.

Chronic fatigue and pain quickly diminished his ability to complete even simple tasks, leaving him unable to stand for any length of time or drive long distances.

The 47-year-old explained: “If I went for a walk, the fatigue would hit first and then the pain, especially in my hips and knees. I stopped going out because I’d be exhausted by the time I got to the pub. I just didn’t see any light at the end of the tunnel. I was lucky work allowed me to do a two and a half day week, but I had no quality of life.”

That was three years ago, and Quentin’s grim situation continued until he enrolled in an Arthritis Ireland self-management course earlier this year.

Learning how to manage his condition triggered a shift in attitude, as he recalled: “Going into the course I hadn’t had one positive thought for three years. I used to run competitively so my idea of being fit and healthy was running long distances. The thought of a three-minute walk was a waste of time, but the course changed my mindset. Instead of focussing on not being able to run five miles, I started concentrating on being able to do a five-minute walk. I now make a weekly action plan and completing it gives me a great feeling of achievement. I also switched to an automatic car which makes driving easier. Previously I would have seen this as giving in to fibromyalgia. Now I see it as something that can help me function normally.”

QQuentinCarrick (1)uentin, from Hartstown in Dublin, is also rebuilding his social life.

“For the last Ireland rugby match I met up with a friend to watch it in the pub”, he said.

“Previously, I’d just not turn up because it was easier than having to explain myself if I was sore and needed to go home early. I’ve stopped avoiding exercise and when I can manage to walk for an hour a day I’ll plan a holiday, something I haven’t done in three years.”

Learning new ways of managing his condition has also given Quentin a huge confidence boost.

He insisted: “I’m a changed man. I’m happy now that I’ll be able to stay in work and I feel so much more positive.”

Arthritis Ireland’s autumn round of life-changing self-management courses gets underway in September. Click here to find one close to you.

Making it count: Paying tribute to a loved one with arthritis by raising funds for Arthritis Ireland.

When Anna Nolan-Pang was invited to speak at Arthritis Ireland’s JA Family Day for JonathanandwifeAnnachildren with arthritis, the visit was an eye-opener for both her and her husband Jonathan.

Having been diagnosed with JA at the age of two, Anna, from Dundalk, grew up without access to many of the supports and services provided by Arthritis Ireland today.

Last year, she stood proudly at the finish line as Jonathan completed his first Irish marathon, a feat which raised €400 to go towards badly-needed support services for Arthritis Ireland.

And the couple’s visit to a JA Family Day was a chance to see where some of that money is being spent.

A delighted Anna explained: “I really love that there’s a family day for kids, and it’s great for their siblings to be able to talk to other families in the same position. When I was younger my siblings didn’t really know what was happening with me because my parents were always busy taking me to appointments.”

She added: “I’ve never known a life without arthritis. Growing up I missed lots of school because of it. I couldn’t go out to play in the yard because I always had sore legs. My mam would drop me right at the door of the classroom. I felt like I stuck out as someone different. It was very difficult for my parents because at the time there wasn’t as much knowledge about arthritis and there wasn’t a well developed support network.”

Anna’s condition deteriorated throughout her teens until she had both hips replaced at the age of 22. Yet it didn’t stop her from jetting off to college in California where she first met Jonathan.

He recalled: “I didn’t know much about arthritis before I met Anna. In fact I was really confused when she told me about it because I didn’t know young people could have it too. She has always had a great attitude and she makes sure to tell me whenever she’s inhibited in some way so she can stop and rest.”

After tying the knot in August 2012, Anna and Jonathan initially settled in California but have since returned to Anna’s home in Louth.

And a major factor in their move was the medical and practical support available for people with arthritis in Ireland.

Anna revealed: “I’ve had the same rheumatologist since I was a child and they know my history, so it made sense to move home. I’ve also been lucky enough to attend support meetings and information talks organised by Arthritis Ireland over the years and that has really helped me to manage my condition. I even got involved in an Arthritis Ireland campaign a few years ago and that taught me not to be embarrassed about arthritis and to be more open about it.”

JonathanPangwithhisMarathonTshirtInspired by his wife’s positive attitude and the easily accessible support offered by Arthritis Ireland, Jonathan came up with a plan.

The keen runner signed up for last October’s Dublin City Marathon, raising funds for Arthritis Ireland along every step of the 26.2 mile course.

The experience taught him a lot about the generosity of the general public.

“No one likes to ask for money but when I started fundraising I quickly noticed how generous people here are when it comes to supporting charities”, he said.

“I put a post on my Facebook page and people who saw it were very quick to help out.”

He added: “When we went to the JA Family Day it was great to see that the money is being put to good use. I’m so pleased that I was able to help in some small way in Anna’s honour and hopefully I’ll do it again.”

And his delighted wife is thrilled to have inspired such an impressive fundraising effort, insisting: “I was so proud of Jonathan when he did the marathon and we really noticed that people were so supportive. Arthritis is much more common than we think and most people know someone who has it. Thankfully they understand the importance of supporting causes like this because it really does make a difference.”

*Arthritis Ireland would like to say a BIG thank you to Jonathan for his generous support and congratulations on completing his first Irish marathon!

Do you have a family member or friend willing to raise funds in honour of people with arthritis?

Here’s how they can do it:

  • Choose your own special challenge, whether it’s a triathlon, a walk, a skydive or something completely different.
  • Register with Arthritis Ireland here and receive your “I’m doing it for my …” t-shirt as well as tips for successful fundraising.
  • Reach out to your family and friends – in person and online – and invite them to support a worthy cause.
  • Enjoy the event and return the funds to Arthritis Ireland where they will be used to fund our work in branches all over the country.

Register for the Dublin City Marathon here today.

Register for another physical challenge around the country here today.

Medical Cards: What We Have Achieved and Why We Need Your Voice Again

By John Church

I’m writing to update you all on our medical card campaign, to thank you for the people with arthritisextraordinary support we’ve received so far and to urge you to continue fighting for people with arthritis by making your own submission on medical cards to the HSE.

Over the last month, I’m happy to report real progress. Having been inundated with calls and emails to our helpline, a great movement of people with arthritis has grown, gathered momentum and prompted a change.

This pressure culminated in an emergency meeting with the Minister for Health James Reilly last week, at which he apologised unreservedly to me for the scandal and promised me that he would fix the system so that medical cards are awarded on medical grounds too.

But we still have a lot of work to do to ensure that arthritis is on the list of approved conditions for a medical card. It is vital that the wave of anger and frustration around medical cards that has been channelled through our helpline, branches and on social media is now felt by the key decision makers and policy makers in the HSE and Department of Health. (Make your submission here now.)

It all started thanks a phenomenal response to our survey three weeks ago which meant we were the only patient organisation able to present Minister Reilly with comprehensive data on the impact of the medical card scandal on our community.

The results of that survey are deeply concerning. Of the 1,200 people who took part:

  • A quarter (23%) said they have/had a discretionary medical card
  • Almost two thirds (60%) of those admitted it had been either taken away or put under review
  • Of these, 69% have had their card taken away or placed under review in the last 6 months
  • It is an issue of even greater concern for children living with juvenile arthritis as 76% of parents said their discretionary cards had been taken away or placed under review

Below is just a selection of people’s responses when asked, “What does having the medical card taken away mean for you?”

  • “Have not been able to afford medication and have not had my Enbrel (medication) since February.”
  • “I am very upset and it is causing me a lot of stress and I will not be able to afford to pay for meds and pay for doctor and I am going into hospital for another knee replacement on 18th of June and am so worried about the operation .I should not have this stress as well.”
  • “It’s been 3 months now and I’ve called every 2 weeks and still no decision. Without my medical card, I won’t be able to afford the monthly infusions or daily meds I need to function on a daily basis…I’m so worried as without my medical card I won’t get the treatment I need and will end up completely disabled.”

I would like to say a HUGE thank you to everyone who took part in this survey. Having this data really strengthened our negotiating position with Minister Reilly and allowed us to feed the media’s appetite for proper statistics on the medical card issue. Being the only patient organisation to conduct a survey meant that the media were quick to cover our side of the story and we secured great coverage across print and broadcast media. Here are just a few samples: RTE News, Irish Examiner & Irish Independent.

We also conducted a cost analysis where we found that the added financial burden on a person with inflammatory arthritis was on average more than €5,500 per year, of which €3,500 is covered by a medical card. And in the case of juvenile arthritis, the average cost on a family was more than €7,000 per year with the medical card covering €3,500.

Costs covered by the medical card include medication, GP visits, blood tests, vaccinations, orthotics, eye tests and podiatry. Additonal costs not covered by the medical card include hospital travel expenses, private physiotherapy and occupational therapy, splints, sun cream and additional heating costs.

Minister for HealthAll of these figures, combined with the human stories of people who have lost their medical cards, allowed me to make a compelling argument to Minister Reilly as to why people with arthritis on expensive medical treatment should be in receipt of a medical card.

As mentioned above, Minister Reilly accepted that people had their cards unfairly withdrawn and said he was determined to introduce a system that will award medical cards based on medical need. I also asked him to consider the views and feedback from patients and patient organisations, like Arthritis Ireland, on what conditions should be included on the new system and he confirmed that he would.

With this in mind, the HSE are now taking public submissions on what conditions should entitle a person to a medical card. This is your opportunity to explain to the HSE why people with arthritis, who are forking out for expensive medical treatment every month, should be automatically entitled to a medical card. The application is simple, you can do it by post with this form here or online here.

Arthritis is often described as an invisible condition; this is your opportunity to let the HSE know the massive impact it has on your life.

By filling out the submission at the link below you can make a big impact on the HSE’s decision to ensure that arthritis is on the list of illnesses that are covered.

Read our submission to the HSE here.

Click here to fill out the form online now or for more information, please call our helpline on 1890 252 846.

Thanks again for your support. Change does not happen without your voice.

John Church, CEO

 

 

 

 

 

 

Almost Two Thirds of Discretionary Medical Cards for People with Arthritis Taken Away or Under Review

Arthritis Ireland Calls on Government to Make Good on Pre-Election Promises to Resolve Issue

Arthritis Ireland is today expressing its deep concern at the number of people with people with arthritisarthritis who have lost their discretionary medical cards in recent months. In a new survey, conducted by the charity, 60% of people with arthritis who have or had discretionary medical cards admitted they had been taken away or placed under review.

The charity is now calling on the Government to make good on their pre-election promises and take action to resolve this ongoing scandal. It is also urging the HSE to ensure arthritis patients on expensive treatments, such as high-tech biologic therapies, are given medicals cards straight away.

In a survey, conducted over the weekend, of 1,200 people with arthritis:

  • A quarter (23%) said they have/had a discretionary medical card
  • Almost two thirds (60%) of those admitted it had been either taken away or put under review
  • Of these, 69% have had their card taken away or placed under review in the last 6 months
  • It is an issue of even greater concern for children living with juvenile arthritis as 76% of parents said their discretionary cards had been taken away or placed under review

This is resulting in added financial pressure and distress on a group of people who are already living day-to-day in severe pain. Below is just a selection of people’s responses when asked, “What does having the medical card taken away mean for you?”

“Have not been able to afford medication and have not had my Enbrel (medication) since February.”

“I am very upset and it is causing me a lot of stress and I will not be able to afford to pay for meds and pay for doctor and I am going into hospital for another knee replacement on 18th of June and am so worried about the operation .I should not have this stress as well.”

“It’s been 3 months now and I’ve called every 2 weeks and still no decision. Without my medical card, I won’t be able to afford the monthly infusions or daily meds I need to function on a daily basis…I’m so worried as without my medical card I won’t get the treatment I need and will end up completely disabled.”

Arthritis is the single biggest cause of disability in Ireland, affecting almost one million people from newborn babies through to the elderly. There is no cure so regular medical treatment is vital to keep the condition in check to prevent permanent joint damage and disability.

Arthritis Ireland CEO, John Church, said: “Although the Government has stated that there is no policy to cut discretionary medical cards, the results of our survey suggest otherwise.

“People with arthritis already face significant challenges living day-to-day with the severe pain and fatigue of arthritis and it is inhumane to place them under further financial hardship and distress by taking away their medical cards.

“We are particularly concerned for families of children with juvenile arthritis as more than three quarters have had their cards placed under review or taken away. Parents are already facing totally unacceptable waiting list times of over 18 months to see a rheumatologist, despite the guidelines recommending a maximum of 4-6 weeks. 

“We are now calling on the HSE to ensure that all people with arthritis who require high cost treatments are given access to a medical card.” 

Arthritis Ireland has a full breakdown here of what people with arthritis need to do in the event of their medical card being taken away or placed under review. The charity’s National Helpline (1890 252 846) is also there to help people who are experiencing difficulties with their medical cards.

This Group Was Made for Walking

Follow in the footsteps of the Pink Ladies and enjoy the benefits of Arthritis Ireland’s Walking Groups

WHEN an arthritis flare-up leaves you feeling sore, stiff and miserable, the Pink Ladiestemptation to curl up on the couch can be hard to resist.

But as the members of Arthritis Ireland walking groups have discovered, moving really is the best medicine.

Elaine Cullen certainly agrees. The 32-year-old is a proud member of the Wexford branch’s “Pink Ladies”, one of the network’s most vibrant and committed groups.

Having been diagnosed with fibromyalgia and osteoporosis five years ago, Elaine’s condition became so severe that she struggled to walk and was even forced to give up work.

However, things changed when she joined the Wexford Walking Group, a development she describes as “like taking a magic pill”.

“I couldn’t believe the difference”, she explained. “Walking is like my treatment. I keep telling myself that diabetics take insulin, whereas I take exercise. When I started in the group I was a very slow walker but I kept it up and gradually I was able to do more. The leaders are fantastic. Sometimes the pain can be so bad that my mood is affected but the group is a great support and cheers me up. Even if I’m too sore to walk, I’ll still go down there for the tea and the chat!”

Yes, while walking is the main pursuit, the post-walk bonding over a cuppa is an equally effective tonic.

Pink Ladies Wexford BranchIt’s now three years since Rosaleen Finnigan and Phil O’Mahoney set up the group. And both women know all about the importance of keeping active thanks to personal experience.

Rosaleen, 66, copes with an unenviable combination of rheumatoid arthritis and osteoarthritis as well as fibromyalgia. And she remembers only too well the shock of her diagnosis. “The worst thing was the isolation. I had to give up work and depression set in. My husband would get me out of bed in the morning, put me in a chair and I’d be there when he came home”, she said.

Determined to manage her condition – and to help others do the same – Rosaleen got involved in the Wexford branch of Arthritis Ireland and trained alongside Phil as a walking group leader.

Hail, rain or shine, the determined ladies now meet every Wednesday evening at the River Bank Hotel in Wexford where they embark on a 40-minute walk.

Rosaleen explained: “We always make sure to warm up beforehand and do stretches to cool down. If it’s extremely wet out, we’ll do exercises to music.  We see the results very quickly and see the difference that walking makes to people’s wellbeing. We all have a laugh, we talk and it’s great fun, and it’s great to have support from people who understand your condition. Of course, anything said within the group stays within the group.”

As they cater for walkers of all abilities, co-founder Phil insists there’s “no entry criteria”.

The 59-year-old, who has rheumatoid arthritis, explained: “We welcome  people of all ages and all abilities. The worst exercise is no exercise and even if you’ve had a bad day, a walk can really help. If someone has bad pain and has to turn back after five minutes, that’s still progress and one of the leaders will always turn back with them. No matter what your pace, you’re never alone because we have a leader at the front, middle and back of the group. Organisation is important too and I always carry a first aid kit as well as spare hats, scarves and gloves so we’re prepared.”

The group’s weekly route varies depending on daylight, but its philosophy of safe and healthy exercise in a supportive atmosphere remains the same.

Rosaleen Finnigan

Rosaleen Finnigan & Phil O’Mahoney

And the enthusiastic members are all united in their belief that it’s a case of reaping what you sow.

As Phil pointed out: “It’s a big commitment but I really look forward to it. I feel it’s important to give something back and you learn so much by being with other people who have the condition. I’d feel I was letting people down if I didn’t go along on a Wednesday night, yet I’d be lost without it because it’s a huge support to me as well.”

Arthritis Ireland’s network of arthritis-friendly walking groups spans right across the country. Find out where your local group is by clicking here or call 1890 252 846.

Would you like the chance to lead your own walking group? Find out how here.