565 Children Waiting in Pain


Children with arthritis are fed up waiting in pain. 565 is the number of children waiting to see a consultant paediatric rheumatologist for the treatment of childhood arthritis, Juvenile Idiopathic Arthritis (JIA). The latest figures show that the waiting list crisis has intensified, with the number of children waiting in pain for over a year and a half increasing by an exponential 400% since January, 2016.

More than 1,200 children are living with arthritis in Ireland today, making it as common as childhood diabetes. However, the paediatric rheumatology service at Our Lady’s Children’s Hospital, Crumlin (OLCHC) is inadequately staffed to deal with the volume of children waiting to be seen. There are just two dedicated consultant paediatric rheumatologists appointed for the entire country to cater for children who live with constant pain in their joints and many other parts of their bodies. There is no cure for arthritis but with the correct standards of care children can have as normal and as active a life as possible.

The inadequate staffing levels are leading to waiting lists of more than a year and half for children with suspected arthritis. This is despite recommendations from the British Society for Paediatric and Adolescent Rheumatology (BSPAR), which states that children with suspected arthritis must be seen by the paediatric rheumatology team within four weeks of the referral being made.

Sixteen-year-old Darcy White waited for almost two years to be seen and commented: “Having waited for nearly two years to be diagnosed, I know how important it is to have quick access to a rheumatologist to get the treatment you need. Nobody knows this moredarcywhite than me, had I been seen earlier my condition would not be this aggressive. The pain is excruciating, it often brings me to tears. Arthritis is an aggressive autoimmune disease that isn’t going anywhere. Most days when I come home from school I lie in bed, I don’t
have the energy to go out. Arthritis came out of nowhere and changed my life completely; it stopped me from doing the things I love, and I hate it for that. I wish I didn’t have to fight arthritis, it seemed a lot easier at first, but now I’m exhausted. But staying positive and hoping that one day we will manage the pain and I will go into remission, helps me to stay strong and more determined to fight. I wish with all my heart that the services for children with arthritis would improve, children should not be left waiting in pain. Don’t they realise they are robbing our childhood and causing irreparable damage physically and emotionally? Don’t they care?

John Church, CEO of Arthritis Ireland, said: “Ireland has only two paediatric rheumatology consultants, we are ranked as having one of the lowest number of paediatric rheumatologists in Europe. If left untreated, it can quickly lead to permanent joint damage, muscle wastage and deformity, not to mention the trauma a child and its family experiences. Children deserve better.”

This is a national crisis, so enough is enough. As part of National Arthritis Week, Arthritis Ireland are calling for the urgent appointment of a third consultant paediatric rheumatologist to be appointed at OLCHC to help ease the huge burden on the already overstretched services. Children on waiting lists are not just waiting in pain; they are also at risk of permanent, irreversible joint damage that impacts on their ability to live a normal a life as possible.

To support Arthritis Ireland sign our petition by clicking here or make a donation by clicking here .

Sona announces Arthritis Ireland as one of its new charity partners

Sona, Ireland’s leading producer of nutritional supplements and herbal remedies, has announced that it has formed a new charity partnership with Arthritis Ireland.

The announcement marks Sona’s continued support of active lives, through a partnership that over the next 12 months alone will see €10,000 in much-needed funding raised for Arthritis Ireland.  The aim of the partnership is to spread awareness of the range of vital support and information that is provided by an Irish organisation committed to working towards a future free from arthritis.

Arthritis Ireland will be given a fantastic platform as part of this partnership to promote its services across Sona’s products, through information that will appear for a limited time on the brand’s packs. Sona’s extensive product range includes a number of effective solutions for bone and joint care ideal for those suffering from arthritis, including Sona JOINTPLAN, Sona Glucosamine Sulphate, Sona Omergan and Omega 3. 

Arthritis Ireland, which was founded in 1981, provides support to communities across the country to help people manage and control this devastating disease. For over 30 years, the charity has actively driven grassroots advocacy so that a voice for Irish people living with arthritis can be heard. Arthritis Ireland also assist the Irish medical community in finding solutions to controlling the effects of arthritis.

Arthritis Ireland cannot directly cure those affected. However, with the help and support of Sona over the coming years, the charity aims to help people take control of their disease while investing in research to find new treatments and, ultimately a cure.

CEO of Arthritis Ireland, John Church welcomed the partnership saying: ‘We are thrilled to be chosen as the new charity partner for such an iconic brand as Sona Nutrition and I want to thank them for choosing to support Arthritis Ireland and help us in our work across Ireland.

As the oldest, established producer of nutrition in Ireland, Sona is the one name in that market that the nation can turn to with confidence. I can guarantee that every cent raised from this partnership will go a long way in making a huge difference to those living with arthritis, reminding them that others care and that they are not alone. Thank you so much to all involved’.

Ohan Yerganharsian, Managing Director of Sona said: ‘It’s impossible to comprehend the challenges that people across Ireland living with arthritis face on a daily basis, however, the work of Arthritis Ireland provides invaluable support to those in need of help. We’re delighted to extend our support to this very worthy cause which we believe will change many people’s lives for the better’.

For more information on Sona Nutrition and Arthritis Ireland, see www.sona.ie / www.arthritisireland.ie

To celebrate the launch of the partnership Sona Nutrition are offering Arthritis Ireland members this special offer:


BENEPALI®, the first etanercept biosimilar referencing Enbrel®, is now available to Irish patients

BENEPALI®, the first etanercept biosimilar referencing Enbrel®[i], is now available in Ireland[ii] for the treatment of adults with moderate to severe rheumatoid arthritis (RA), psoriatic arthritis (PsA), axial spondyloarthritis (AxSpA), and plaque psoriasis (PsO)ii.

The originator product Enbrel®, available to patients through the HSE’s High Tech Arrangements (HT) programme, cost the Government approximately €60 million in 2014 –  the second most-prescribed product on the scheme[iii].

“Anti-TNFs such as etanercept have revolutionised the outlook for patients living with conditions such as RA,” said Professor Gerry Wilson, Professor of Rheumatology at University College Dublin and Consultant Rheumatologist at St Vincent’s and Mater University Hospitals, Dublin. “The availability of an etanercept biosimilar may increase patient access to these products and allow resources to be directed toward new innovative medicines.”

Around 915,000 people in Ireland are living with some form of arthritis[iv], making it the single biggest cause of disability in the country.

BENEPALI’s® availability comes shortly after the publication of the Health Protection Regulatory Authority’s (HPRA) first biosimilars guide[v], which is targeted at doctors and provides information on the regulation, prescribing, dispensing and traceability of biosimilar medicines in Ireland.

Mr John Church, CEO of Arthritis Ireland, also welcomed the availability of BENEPALI®: “Arthritis Ireland is glad that the significant number of people in Ireland with RA, PsA, AxSpa and PsO may now avail of etanercept at a lower cost. This may potentially expand the number of patients who can benefit from this important treatment option.”

“It is great news for patients that, with the introduction of our first biosimilar in Ireland, doctors have a new treatment option that may help reduce expenditure and support ongoing patient access to anti-TNF therapy,” said Mr Darren Clarkson, Regional Director, Biosimilars UK/Ireland at Biogen. “Biogen has a rich heritage in biologics, and we are proud to be launching the first etanercept biosimilar in Ireland.”


BENEPALI (etanercept), formerly known as SB4, is the first biosimilar referencing Enbrel, and is the first subcutaneous anti-TNF biosimilar available in Ireland. It was developed by Samsung Bioepis, a joint venture between Biogen and Samsung BioLogics.  The EC approval was based on a robust preclinical and clinical data package submitted to the European Medicines Agency by Samsung Bioepis. The data in the preclinical submission leveraged sophisticated molecular analytics and technical development. Confirmatory data from well-controlled, head-to-head Phase 1 and Phase 3 clinical trials compared BENEPALI to Enbrel. The 52-week, doubleblind, Phase 3 study randomised 596 patients with moderate to severe RA despite methotrexate therapy, across more than 70 sites in 10 countries to receive BENEPALI or Enbrel in a 1:1 ratio. Analysis of the primary endpoint at week 24 showed that BENEPALI had equivalent efficacy to Enbrel, as shown by an ACR20 response of 78.1% in the BENEPALI arm versus 80.3% in the Enbrel arm.

Network Ireland Kildare Branch chooses Arthritis Ireland as “Charity of the Year”

network-ireland-kildare-branch-picks-arthritis-ireland-as-luncheon-charityNetwork Ireland Kildare branch have announced Arthritis Ireland as Charity of the Year for their annual luncheon this November, as they raise money for the Arthritis Ireland Children and Youth Programme. Arthritis is a condition that affects more than 1,200 children in Ireland, making it about as common as childhood diabetes. Arthritis Ireland provides much-needed services and educational programmes to help children and teenagers live well with arthritis.

Lorna Norton’s son, Mark aged seven, was diagnosed when he was four years old. The Norton family are from Caragh, Naas. Lorna said: “When Mark was a baby, he could not raise his head, he missed all of his milestones, and we were told that he might never walk. Some days Mark cannot get out of bed because he is in too much pain, he cannot carry a schoolbag on his back because it makes his knees buckle underneath him. People often don’t understand that Mark has this condition, that there is anything wrong. The services Arthritis Ireland provides are invaluable to us. The family support, workshops, educational programmes allow Mark, and our family, to live as normal a life as possible. The day we picked up the phone to Arthritis Ireland was a turning point for our family; we could finally see a light at the end of the tunnel. So, I was delighted to hear that Network Ireland Kildare branch had chosen Arthritis Ireland as their charity of the year. I know the people of Kildare will come out in force to support this worthy cause and help continue the services they provide to my family and all other families living with this horrible condition.”

John Church, CEO Arthritis Ireland, said: “Arthritis is often seen as an “old person’s disease” with “a few aches and pains”. However, it is a serious chronic disease impacting on children and young people in Ireland, childhood arthritis needs to be given the respect and resources it deserves. We are delighted that Network Ireland Kildare branch chose us as their charity partner, their support will allow us to continue our children and youth services both in Kildare and nationally.”

Stella Johnson, Network Ireland Kildare President, commented: “We are thrilled to have Arthritis Ireland as our charity of the year. So many of us were not even aware children could have arthritis, the severity of the disease and the impact on their childhood. Arthritis Ireland is providing fantastic support for these children and families, and we want to help them continue and grow their services. Their positive, no limits attitude to managing the disease is exactly the ethos we try to instil in our own members. These children and families are an inspiration to us and I know the people of Kildare will rally to make this year’s charity luncheon the best one ever.”

Network Ireland Kildare Branch’s Charity Luncheon is always a joyous occasion filled with entertainment and opportunity with their annual charity raffle. The luncheon will take place on Friday the 18th of November at 1pm in the Osprey Hotel + Spa, Naas. All are welcome to attend and support their annual fundraising effort for this worthwhile cause. Members can avail of a special price of €65, guests/non-members are also welcome with a ticket price of €75. Places are limited, so book now to avoid disappointment at http://www.networkireland.ie/events/eventsurl/annual-charity-lunch/.

Network Ireland Kildare Branch is an organisation for women in business, the professions and the arts. With eight branches around Ireland, Kildare is currently one of the largest, providing a forum where women in business, the professions and the arts can exchange ideas and increase their connections and contacts.


Arthritis Ireland’s Governance & Management – a letter from our CEO John Church.

In light of the recent media coverage, it is important as Chief Executive of this great organisation, I share with you the lengths to which we go to ensure we are fully compliant with all legal and regulatory requirements and that we exercise good governance at all times.

You can download our impact report below to see exactly where our money came from in 2015, and exactly where it was spent.

Arthritis Ireland is a limited company with charity status, which means that we are subject to all the rigour and rules imposed by the Companies Registration Office. As a charity, committed to operating to the highest standards of good practice and transparency, we are also happy to confirm that we welcome and are signed-up to the following codes of practice – the Code of Governance for Type C organisations, the Statement of Guiding Principles for Fundraising, the Statement of Recommended Practice for accounting and reporting, the Regulation of Lobbying Act 2015 and the Charities Regulatory Authority.

Arthritis Ireland is governed by a Board of Directors who give their time freely and generously to further the cause. A full list of our Board Directors can be found by clicking here. Arthritis Ireland has a designated Governance sub-committee, who deal with all elements of the audit, finance, and remuneration of employees. Ernst & Young (EY), one of the leading auditors in Ireland, produce a set of annual accounts. Accounts for the last number of years can be found here. http://bit.ly/2a8FtbA

There is more detail regarding our governance and management on our website, along with a detailed 2015 Impact Report outlining our impact in the community which you can access here. You will also find all of our salary information through this page.http://bit.ly/2au8ZrL

Thank you for your on-going support and commitment to Arthritis Ireland. None of what we do could happen without our members, fundraisers, volunteers, staff and board who support the organisation in so many ways.

Together, I look forward to continuing our fight against arthritis in 2016.
John Church

Peter Boyd’s (Arthritis Ireland Volunteer) account of our 2016 National Volunteer Conference

‘Thanks for coming’, ‘take care now’, ‘mind yourself’, ‘good luck’, ‘mind yourself’, ‘safe home’,

‘Mind Your Self’

I said this to a lot of people at the weekend, and while I’ve always wanted the person hearing it to arrive home safely or watch out for any lurking dangers when I’ve said it before, this time it carried some extra resonance and a deeper meaning.

Like that best friend, partner or mammy who doesn’t say ‘Howya’ when they see you, but asks with genuine interest; ‘How are you?’ They want to know what’s going on in your life, and they want to help. It’s a subtle difference in tone and emphasis but to someone in pain or who needs a listening ear they will recognise that vital difference.

I spent Friday evening and Saturday at the Arthritis Ireland National Volunteer Conference in Athlone. I made sure I got down nice and early to take advantage of the pool. It turns out my shoulders didn’t get the memo though because after doing my warm-up I tried to swim. More crunching went on in my shoulders than at a Crunchie eating party on a Friday in the Cadbury factory!

I was forced into a quick rethink and change of plan if I wanted the relaxation and calm I was searching for. I sat in the garden room of the hotel and read my book for an hour and a half while sipping coffee, a more than adequate substitute!

As a result of this, I would have said I’m pretty good at minding and looking after myself. Saturday changed my mind on this in a very positive way. We did a workshop on “Minding yourself“, and it threw up some brilliant questions for us all.

For example, we were asked about all the different roles we perform in our day-to-day. These included things as diverse as a patient, a parent, a carer, a chauffeur, a cook and a peacekeeper. We were then asked to explain why we choose to add volunteering into our busy lives.

All of us gave reasons that had to do with helping others and that we got our satisfaction from having helped others and giving of ourselves. The problems and challenges we encountered were mainly caused by the days we are affected by our disease and can’t give our best to other people.

But how do you get to the point of being able to volunteer and provide that help and support to people living with arthritis? It turns out; everything truly begins at home, and we must Mind Ourselves first and then look after those we care about. There is a reason we are told to put on our own oxygen masks first before looking after children and others.

So while on Friday I did try to put myself first by settling in for a read and a coffee, it turns out its ok to spoil myself from time to time. We may want to be all things to all people, but sometimes we need to remind ourselves that we are enablers and not magicians.

That is one quote I’ve robbed from a list put together by Mary for us all to bring home and another from Fiona during the workshop was to know the difference between important and urgent. It might be important to answer an email by Friday, but that isn’t urgent on Monday morning.

It is terrible to have to break it to people delivering these workshops that sometimes they are not teaching us anything new. HOWEVER, they are reminding us of buried and forgotten information that we should pay attention to and benefit from. A bit like giving up trans fat and added sugar, it’s something we all know we should do but don’t.

I’ll tell you something for nothing, and I hope it sinks in. This is much easier to do than putting down the pastries and leaving the biscuits untouched with your tea.

So to all the staff in Arthritis Ireland who organised a great event, I say thank you.

To all my fellow volunteers I hope you had as good a time as I did and you did indeed mind yourself getting home. You guys reminded me, as you always do that we don’t have to be at our best to volunteer and help out, but when we give ourselves the best chance and spoil ourselves from time to time too, we can achieve wonderful things.

Mind Yourselves, PB

For more information on events and your local branch, please visit our website here or call Eleanor on 01-6470204

Children with Arthritis – Exam special


With exams fast approaching it can be a stressful time in any household but when someone lives with arthritis, it can make things a little more challenging.

We’ve put together some tips and information together ahead of the exams starting and also a blog from one of our Youth Leaders on how she survived the Leaving Cert.


Top tips in the weeks leading to the exams 

  • Set realistic goals for yourself and review what you have covered and what you need to cover regularly so that you don’t get any unpleasant surprises.
  • If you are using exam accommodations such as a scribe or laptop, practice before the exams so that it’s not your first attempt on exam day.
  • Make sure that you relax, de-stress and have some fun as often as necessary to keep the pressure at a manageable level.
  • Make to-do lists; this will help keep focused and organised. Prepare all the materials you need for the exam the night before.
  • Coming up to the time of exams ensure that you get enough sleep and avoid studying into the early hours right before an exam as tiredness will make it harder to think and to remember what you know.
  • If panic sets in BREATHE, whether it is in the middle of an exam or while trying to sleep the night before, deep relaxing breathing will help to calm your nerves and allow you to get on with it!


During the exams:  

Don’t miss out on sleep

Staying up all night might seem like a great idea but getting enough sleep is hugely important especially when you have arthritis. Not only will it help concentration levels but it will also help the body to recover.

Eat Well 

Eating well and having a good breakfast will help with enegy levels and fatigue.

Stay hydrated

Stay hydrated, drink lots of water and make sure to bring a bottle into the exam. We get dehydrated very easily when stressed and nervous!

Arrive early

Get to the exam hall or room early. Not only will it allow you to get set up but it will make things a little less stressful.


It might seem a little obvious but try and test all your pens beforehand. Find a pen that is comfortable to use if you are writing the exam.

Movement Breaks

Take stretch or movement breaks if you can or at least move your joints at the desk every 20 minutes to avoid cramps and excessive pain.

Ice packs/ heat packs

Bring a supply of ice packs or heat packs into the exam hall if you can.


When in exam mode it’s easy to forget about our routine, remembering to take medication is really important.


Some fresh air and gentle exercise will do you the world of good, even if it is only a 10 or 20 minute gentle stroll.

If you have exam supports, don’t be afraid to make the most of them and use them.

After exam:

Don’t forget that an unsuccessful exam is not the end of the world; you can try again, do better next time or take a different course, subject level, etc.

If you are heading to third level education, you can make contact with us in Arthritis Ireland and we will be happy to let you know of available supports.


Hear first hand from Emily on surviving exams 
My name is Emily, I’m 20 years old, I have Juvenile Psoriatic Arthritis and Fibromyalgia, and two years ago I did my leaving cert.

It’s difficult to know where to start when it comes to things as big as the leaving cert year, but I guess I’ll start it off with a positive. I did it, thousands of other people did it, you can do it, I promise.

To read more about Emily’s story and her Leaving Cert experience click here