A 2022 report by the British Society for Paediatric and Adolescent Rheumatology (BSPAR) highlighted that children with JIA face disrupted education due to medical appointments, flare-ups, and fatigue. Some experience long-term absences.

Without awareness, schools may not make appropriate accommodations, potentially impacting educational outcomes and social development.

This year, JIA Awareness Week is taking place between 7th-11th July. The campaign will be focusing on short educational videos covering various aspects of this condition, in hopes of raising awareness for all those living with JIA and AJIA (Adult Juvenile Idiopathic Arthritis).

Did you know that over 10,000 children under 16 in the UK live with JIA (juvenile idiopathic arthritis)? JIA is a type of inflammatory arthritis that affects the joints and organs and can significantly impact a young person’s mobility, sometimes leaving them reliant on a wheelchair.

Facts on JIA and diagnosis

• Over 40% of children with JIA report significant pain despite medication.
• Despite advances in treatment, pain remains a major daily issue for many children with JIA. This statistic reflects the persistent physical burden and the need for more holistic approaches to care.
• Raising awareness can help promote the need for multi-disciplinary care that includes physiotherapy, occupational therapy, and psychological support, in addition to medication. 
  JIA symptoms are not always recognised, which can lead to delays in referrals to specialists.
• Up to 40% of young people with JIA experience mental health issues such as anxiety and depression.
• Research indicates that the chronic pain, fatigue, social isolation, and medical burden of JIA contribute significantly to poor mental health outcomes among affected children and adolescents as well as the carers impacted by the condition.
• Raising awareness can help build more compassionate school environments, reduce stigma, and ensure integrated mental health support is offered alongside physical treatments.
• A focus on the healthcare of children means that other aspects such as mental health, wellbeing and education are not always addressed.

^{(source NCEPOD.org.uk and JointCare)}

“We all know education is so important, and with attendance being a hot topic recently, the fact that children are missing school with this condition cannot be ignored. The more awareness raised about this condition, the better it can be managed at home and school. JIA at NRAS has the resources that people desperately need, and this week is all about our free publications that can help so many”

Stuart Munday, NRAS Chief Operating Officer

Andy’s Story

Andy and Vicki Richards knew something was wrong with their daughter, Maria, when she was just two years old. However, it took eight months from the onset of symptoms for her to be diagnosed with JIA.

“Her walking looked off – she wasn’t moving her knee and ankle joints properly. Vicki took her to the GP multiple times, but we were repeatedly told there was nothing to worry about. The biggest battle was getting someone to listen.”

At JIA-at-NRAS we want people to be aware of JIA and affect it can have on young people and their daily lives. The length of time between the onset of symptoms and diagnosis means many families are not receiving the specialist care they desperately need. This is why JIA Awareness week is so important to raise awareness of this hidden, often misunderstood disease.

Contact Information

eleanor@nras.org.uk 
 01628 823 524 
https://jia.org.uk/

Notes to Editors:

• Juvenile Idiopathic Arthritis (JIA) means there is inflammation in a child’s joints that isn’t caused by any other condition. It refers to a number of different types of arthritis that occur under the age of 16.
• JIA-at-NRAS is a part of the National Rheumatoid Arthritis Society (NRAS). We design, coordinate, fund and deliver a comprehensive and wide range of high quality products and services for all affected by RA and JIA.
• The National Rheumatoid Arthritis Society (NRAS) is the only patient-led organisation in the UK specialising in rheumatoid arthritis (RA) and juvenile idiopathic arthritis (JIA).
   
   

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The National Confidential Enquiry into Patient Outcome and Death (NCEPOD) has recently published its report, “Joint Care?”, examining the quality of care provided to children and young adults with Juvenile Idiopathic Arthritis (JIA) in the UK. As an organisation dedicated to supporting those affected by JIA and AJIA, we acknowledge the critical findings and recommendations outlined in this report and emphasise the urgent need for systematic improvements in JIA care.

Key Findings

1. Delayed Recognition and Referral: The report highlights that symptoms of JIA are not always promptly recognized, leading to delays in referral to specialists. This can result in postponed diagnoses and treatment initiation, adversely affecting patient outcomes.
2. Inconsistent Care Pathways: There is a notable lack of standardized protocols for the investigation and management of suspected JIA cases, particularly for adolescents. This inconsistency can lead to fragmented care and variability in treatment approaches.
3. Challenges in Transitioning to Adult Services: The transition from paediatric to adult rheumatology services is often poorly managed, with insufficient planning and support. This can result in young adults disengaging from care, leading to unmanaged disease progression.
4. Limited Access to Multidisciplinary Teams (MDTs): Many patients lack access to comprehensive MDTs experienced in paediatric rheumatology, which are essential for holistic care addressing the medical, psychosocial, educational, and vocational needs of young people with JIA.
5. Delays in Treatment Due to Training Gaps: Treatment initiation is sometimes delayed because of a lack of training for patients and caregivers on administering subcutaneous injections, such as methotrexate.

Recommendations

In response to these findings, NCEPOD has made several recommendations to enhance JIA care:

• Standardized Referral Pathways: Develop clear, well-publicized referral pathways and shared care protocols within defined clinical networks to ensure timely and appropriate referrals.
• Structured Transition Processes: Implement individualized, developmentally appropriate transition plans that address medical, psychosocial, educational, and vocational aspects, facilitating seamless progression from paediatric to adult services.
• Access to Multidisciplinary Care: Ensure all patients have access to MDTs experienced in paediatric rheumatology, providing comprehensive care and support.
• Training for Medication Administration: Provide timely training for patients and caregivers on administering necessary medications to prevent treatment delays.

We are dedicated to advocating for the implementation of these recommendations and supporting initiatives that aim to improve the quality of care of young people and adults with JIA. We will continue to collaborate with healthcare providers, policymakers, and families to promote awareness, education, and the development of robust care pathways that address the multifaceted needs, as set out above, of those affected by JIA no matter what stage of their journey they are on.

The full report can be read by following the link below:

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We are a proud member of the HCSA (health conditions in schools alliance) and work with them regularly to improve support for people living with JIA in schools. The government has issued Statutory Guidance supporting arranging educational provision for children who are unable to attend school due to their health care needs. 

If your child of compulsory school age is unable to attend school, as a result of their JIA, or any other health condition, the local authority must arrange for appropriate full-time education (or as much education as the child’s health allows). This guidance relates to local authorities statutory duties under Section 19 of the Education Act 1996. Although there is no statutory timeframe, the local authority should attempt to arrange this as soon as it is clear that the child will be absent from school for more than 15 school days (consecutively or cumulatively). For long term medical conditions, education can be provided at home or at hospital. The local authority should have a named officer who is responsible for the education of children with additional health needs and their details should be made known to the parent.

All students of compulsory school age have the right to a full-time education. A child can be placed on a temporary part-time timetable in exceptional circumstances, such as when a medical condition prevents full-time attendance. This cannot be a long-term solution, and it must be clear when the part-time timetable will end. Absences from school as part of the part-time timetable must be considered authorised. The legal duty does not apply to children and young people under and over compulsory school age. However, local authorities and schools should have clear policies in place to support these children and young people to access education and should follow the principles, set out in the guidance as good practice.

This guidance applies whether the child or young person is on a school roll or not and all children, regardless of circumstance or setting, should expect to receive the same high standard of education. The alternative provision must be suitable to the child’s age, ability and aptitude, and any special educational needs they have, inclusive of any educational healthcare plans or individual healthcare plans. 

Crucially, the guidance stipulates that the provision of a part-time timetable must not be used as a disciplinary measure.

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The National Rheumatoid Arthritis Society (NRAS) is proud to announce the launch of 2023’s Juvenile Idiopathic Arthritis Awareness Week (JIA AW). 

JIA-at-NRAS started JIAAW in 2022 with the aim to raise the awareness of the condition by educating and informing friends, family, employers and the general population about what juvenile idiopathic arthritis (JIA) is and the devastating impact it can have on people’s lives. 

The aim of the campaign is to raise awareness of JIA and eliminate the misconceptions held by many about what JIA is. During JIA Awareness Week we hope to educate and inform friends, family, schools, employers as well as the general population about JIA and it’s impact on all aspects of a young person’s life. JIA is very different to other forms of arthritis such as osteoarthritis (OA), in that JIA can strike at any age under 16 and around half of those children diagnosed each year will have the condition throughout their lives. It is an auto-immune disease, which means that in addition to affecting the joints, it can impact internal organs and quite commonly the eyes. There are serious consequences to getting a late diagnosis or a lack of targeted appropriate treatment. 

For JIAAW 2023 the theme is #BustingJIAMyths, focusing on dispelling the myths that surround this currently incurable invisible condition. The JIA community, people living with JIA, their families/carers and Healthcare professionals are only too aware of the misconceptions that other people can have around inflammatory arthritis, and we want to spread awareness to raise the profile of this condition with a ‘JIA Mythbuster’ quiz that all can take part in. 

Throughout the week we will be sharing videos and stories on our social media platforms, so please do get involved by sharing and using the hashtag  #BustingJIAMyths  and #JIAAW203. The more people see and take the quiz the more we can spread awareness of living with this condition! 

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This project is to find out from children and young people what it is like to have sore and painful muscles and joints. Keele University are trying to work out how children, young people and parents would like the pain to be managed and what information they would like about the pain.

They are therefore looking to recruit for this study and to qualify you must:

• Are/have a child or young person aged 8-18 years with sore or achy muscles and joints.
• Have visited the doctor, practice nurse, physiotherapist or occupational therapist in the past three months.

What would taking part involve?

If you/your child choose to take part, we will ask you/them to talk in an interview about experiences and views of living with sore or achy joints and muscles and visits to the doctor, practice nurse, physiotherapist or occupational therapist. Based on their/your choice, these interviews can be in person or online.

“Pain Diary”

A “pain diary” will be sent (or an online link to access the diary). This is to note experiences for around three weeks before the interview. You can choose how you tell us about thoughts and experiences in the diary, including drawings, in voice recordings or a normal written diary. You will be able to use your diary to help you remember important things about the experiences to talk about in the interview.

Interview

In the interview, we will also show some pictures of children and young people visiting their family doctor with pain, these pictures may look a bit like a comic strip. The idea is that these pictures will help you think about your own experiences of visiting the doctor, practice nurse, physiotherapist or occupational therapist for your pain, and what could make visits like this better for children and young people.

We will record the interview using an audio recorder, so we can remember all the things you tell us. We will then type this up, we will be really careful to make sure that your name and any information which might identify you (e.g. names of other people and places) are removed so that people won’t be able to tell that these are your words.

Get involved to take part in this project, please email research.CAMPainStudy@keele.ac.uk and they will provide you with further information.

Additional information

All researchers will have undergone a DBS check and all interviews with minors will be undertaken with parents present or within eyeshot.

The study is being carried out by a research team at Keele University. The research is co-funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research (grant ref NIHR203281) and Versus Arthritis.

To make sure that Keele University look after children and young people to the best of their ability. All research is looked at by an independent group of people, called a Research Ethics Committee. This study has been reviewed and given approval by the Faculty of Medicine and Health Sciences

Research Ethics Committee at Keele University. The study has also been reviewed by experts, who decided to fund the project.

Contact for further information

For further information, you can contact the study team by telephone on 01782 734986 or via email: research.CAMPainStudy@keele.ac.uk

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Following advice from the Joint Committee on Vaccination and Immunisation (JCVI) on Covid-19 vaccinations of at-risk children aged 6 months to 4 years, the Health and Social Care Secretary Steve Barclay has issued a statement formally accepting it. The JCVI advises that children aged 6 months to 4 years in a clinical risk group should be offered 2 3-microgram doses of the Pfizer-BioNTech COVID-19 vaccine.

You can read the JCVI’s full advice here on the health protection section of the GOV.UK website.

It is important to note that data shows that Covid does not pose a serious threat of harm to most children. Furthermore, not all children who are in a clinical risk group are equally at risk of harm should they contract Covid therefore it should be a parental decision made (if necessary) with the guidance of their child’s healthcare team as to whether they wish to vaccinate for protection against Covid or not.

For more updates on COVID-19 and everything JIA, follow us on social media on Facebook, Twitter, Instagram and even our TikTok!

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The Global Rheumatology Alliance just launched a new 2023 GRA COVID-19 Pediatric Survey to learn more about the experiences of children with rheumatic diseases regarding COVID-19 infection and its effects, and decisions and experiences with the pediatric COVID-19 vaccines.

Everyone is welcome, no matter where you are in the world! The survey is available in multiple languages.

There is no cost to participate and no payment for participation.

The survey takes ~15 mins to complete.

Who can participate?

You are eligible to complete this COVID-19 survey if:

• You are 18 years of age or older.

AND

• You are the caregiver of a child (young than 18 years old) with a diagnosis of a pediatric rheumatic disease.

NOTE: You can complete the survey on behalf of your child regardless of whether your child has had COVID-19 infection or received the COVID-19 vaccine.

Ready to take the survey?

Or copy and paste the link into your browser: https://rheum-covid.org/pediatric-survey

Don’t miss your chance to let your voices be heard!

Have any questions?

Visit the website at rheum-covid.org or email rheum.covid@gmail.com.

Share with your friends, family, and community!

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Please note: This survey has now closed and will not be receiving any further responses. Thank you to all those who participated.

Are you between 13-18 years old and living with juvenile idiopathic arthritis (JIA)? Or are you a parent or a caregiver of a 13–18-year-old with JIA? Researchers are looking for YOUR guidance on understanding what it takes to be resilient and bounce back from JIA pain.

What we know: Pain and mental health concerns are some of the top issues that many youth with JIA and their families face. In the face of these challenges; however, many families continue to describe strength and resilience.

“She handles everything that she goes through with so much strength… Her disease doesn’t define her, she defines it.”

Mother of a 16-year-old with JIA

What we WANT to know: Canadian researchers from the It Doesn’t Have to Hurt research team and Cassie + Friends have set out to better understand what it takes to be resilient so that health care providers can better support other families coping with JIA pain and mental health challenges.

What does this study involve? Researchers are looking for 319 youth and parent pairs to participate in a one-time online study. Participants will be asked questions about their/their child’s arthritis, pain, and well-being. The online survey will take about 40-60 minutes to complete, and a token of appreciation will be provided as a thank you to participants for sharing their experiences.

Who is eligible: Youth between 13-18 years of age with a diagnosis of JIA and their caregivers. Youth are eligible whether they are currently experiencing pain, have in the past, or have not experienced any at all. Youth-parent pairs must have access to the internet and wi-fi to participate. Researchers welcome English-speaking participants from around the world! The survey has been developed for international use and adapted where possible to accommodate the UK survey criteria.

Through this study, researchers hope to make managing JIA pain a little bit easier by learning how to promote resilience in families.

This study has been funded by the Canadian Institutes of Health Research and approved by IWK Health’s Research Ethics Board. It is led by researchers Yvonne Brandelli (PhD student at Dalhousie University supported by Research Nova Scotia, an IWK Graduate Scholarship, and a Dalhousie Mabel E. Goudge Award), Dr. Sean Mackinnon (Senior Instructor at Dalhousie University), Dr. Christine Chambers (Tier 1 Canada Research Chair in Children’s Pain, Professor at Dalhousie University, and Registered Psychologist), alongside a team of researchers, rheumatologists, and youth and parent partners from across Canada.

For more information and study updates, you can send them an email (itdoesnthavetohurt@iwk.nshealth.ca) or check out their research website www.itdoesnthavetohurt.ca/campaigns/jiastudy/.

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NRAS have been working with Nordic Pharmaceutical company and Open Health on research to explore the experience of living with JIA from a child’s perspective, so it can help us to understand what patient choice and patient preference look like for a child. By exploring their experience and their current needs it will help us understand how support and care can be improved, and also discuss auto-inject pens.

We are looking for children with JIA aged 6 to 12 years old for a workshop on the 15th October in Birmingham. You will be paid for your child’s time. For more information and how to register please click on the button below to view the recruitment flyer.

The details

What: 4-hour workshop for children between. 6–12 years old, including breaks.

Where: Village Hotel Solihull, Dog Kennel Lane, Shirley Solihull, B90 4JG.

When: 11am–3pm, Saturday 15th October 2022.

How to sign up

For more information or to take part, please email debbiew@nras.org.uk.

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On the 16^th of August 2022 the Joint Committee on Vaccination and Immunisation (JCVI) published further advice for the roll out of the COVID-19 autumn booster programme. In this they discuss which of the vaccines should be utilised in the autumn boosters administration.

They do highlight that all vaccines being used for boosters offer good protection levels versus the serious illness from coronavirus and that the onus should be placed on eligible parties getting the booster ahead of the winter season rather than on which type of vaccine is used.

Professor Wei Shen Lim, Chair of COVID-19 immunisation on the JCVI, said:

“All of the available booster vaccines offer very good protection against severe illness from COVID-19. As more vaccines continue to be developed and approved, the JCVI will consider the benefits of including them in the UK programme.”

“It is important that everyone who is eligible takes up a booster this autumn, whichever vaccine is on offer. This will increase your protection against being severely ill from COVID-19 as we move into winter.”

Professor Wei Shen Lim, Chair of COVID-19 immunisation on the JCVI

Dr Mary Ramsay, Head of Immunisation at UK Health Security Agency (UKHSA), stated that:

“Although cases of COVID-19 are relatively low at present, we are expecting to see the virus circulating more widely during the winter months.”

“The booster is being offered to those at higher risk of severe illness and by taking up the booster vaccine this autumn, you will increase your protection ahead of the winter months, when respiratory viruses are typically at their peak.”

Dr Mary Ramsay, Head of Immunisation at UKHSA

Health and Social Care Secretary Steve Barclay said, “I have accepted the independent advice of the Joint Committee on Vaccination and Immunisation (JCVI) on which vaccines should be offered in this autumn’s booster programme. This includes a Moderna bivalent vaccine which will target two different variants – the Omicron and original strain of Covid.”

 “Vaccines remain our best defence against Covid, and this safe and effective vaccine will broaden immunity and potentially improve protections against some variants as we learn to live with this virus.”

 “Our vaccine rollout to date has been world leading – it has already saved countless lives and reduced the pressure on the NHS.”

 “We will begin to contact those eligible from early September, and I would urge people to come forward as soon as they are invited so together we can keep each safe and protect our NHS.”

Who is eligible for the autumn boosters? 

Guidance as to who is eligible for the autumn boosters can be found here: Over 50s to be offered COVID-19 booster and flu jab this autumn – GOV.UK (www.gov.uk).

We have provided below a summarised list of eligible groups and put in bold the categories that apply to those with rheumatoid or juvenile idiopathic arthritis and those who come into close contact with these groups such as carers.

• Residents in a care home for older adults and staff working in care homes for older adults.
• Frontline health and social care workers.
• All adults aged 50 years and over.
• Persons aged 5 to 49 years in a clinical risk group¹, as set out in the Green Book.
• Persons aged 5 to 49 years who are household contacts of people with immunosuppression.
• Persons aged 16 to 49 years who are carers, as set out in the Green Book.
  
  

Which vaccines are being used in the autumn booster programme?

For adults aged 18 years and above:

• Moderna mRNA (Spikevax) bivalent Omicron BA.1/Original ‘wild-type’ vaccine.
• Moderna mRNA (Spikevax) Original ‘wild-type’ vaccine.
• Pfizer-BioNTech mRNA (Comirnaty) Original ‘wild-type’ vaccine.
• In exceptional circumstances, the Novavax Matrix-M adjuvanted wild-type vaccine (Nuvaxovid) may be used when no alternative clinically suitable UK-approved COVID-19 vaccine is available.

For people aged 12 to 17 years:

• Pfizer-BioNTech mRNA (Comirnaty) Original ‘wild-type’ vaccine

For people aged 5 to 11 years:

• Pfizer-BioNTech mRNA (Comirnaty) Original ‘wild-type’ vaccine paediatric formulation.
  
  

More about the vaccines

An evolving landscape

Coronavirus as we all know has evolved into a number of different variants and because of this there is an ongoing need for global pharmaceutical companies to continue a responsive approach to the ever changing situation through research and the development of vaccines which address the differences in the strains of the virus.

Because of this ‘Bivalent’ vaccines have been developed in order to fight the now dominant Omicron variant of COVID-19. In essence ‘bivalent’ describes a vaccine being made up of two (‘bi’) parts. These vaccines contain two different antigens (substances that facilitate an immune response) based on two different COVID-19 strains, or variants. This differs to the original mRNA vaccines which only contained a single antigen (‘monovalent’), based on the original ‘wild-type’ strain.

How much better are the ‘bivalent’ vaccines?

At this point in time, research has shown a marginal increase in the immune response mounted to the Moderna bivalent vaccine (which targets the Omicron and original variants of the virus) compared to the original Moderna monovalent vaccine. Although, it is noted that the clinical relevance of this differences is yet uncertain and will require further study.

The JCVI will consider further bivalent vaccines on an ongoing basis for their suitability for use in the autumn booster programme as they are approved by the MHRA.

How will the autumn vaccines be rolled out?

In its latest advice the JCVI has stated that, where feasible, it would be preferable for a single type of booster vaccine to be offered throughout the duration of the autumn programme for simplicity of deployment.

NHS England will confirm details on how and when eligible people can access the autumn booster vaccine in due course.

For more updates on the ongoing COVID situation and all things RA, follow us on social media via Facebook, Twitter, Instagram and LinkedIn to stay up to date.

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