Category: Northern Ireland

Last month around 65 parent carers and practitioners attended Contact NI’s second rare conditions conference, Supporting Children and Families Living with Rare Diseases in Northern Ireland.

Held in collaboration with the Northern Ireland Rare Disease Partnership and supported by the Pears Foundation and Dormant Accounts Funding NI, May’s conference built on the momentum of Contact NI’s rare conditions conference which took place in January to provide another opportunity for parents and practitioners to connect, exchange information, and learn from each other.

Contact’s Northern Ireland Trustee, Kate Fleck, opened the conference and attendees heard some of the key insights and findings that came out of January’s conference which included the challenges parent carers have getting information and support for their child.

“It is a real help to know that Contact is focused on our needs. Too many times we feel as parent carers that we are on the defensive, always battling. Today was a piece of respite for me.” 

Parent carer who attended Contact’s NI Rare Conditions Conference

A panel discussion also took place, featuring expert insights from a paediatric specialist, solicitor, and other healthcare professionals, who addressed some of the critical issues faced by rare conditions families and provided a space for in-depth discussion and Q&As.

Attendees had the opportunity to try out our workshops for practitioners and parent carers which offer practical tools and strategies for managing rare conditions and improving communication between carers and the professionals they come into contact with.

“I felt emotional during the wellbeing workshop…I think it was the first time in a long time that I actually realised how much trauma I’ve been holding since our daughter’s diagnosis.” 

Parent carer

Catherine Murnin from Contact’s Business Development team said: “Our conference created a supportive environment for sharing experiences, learning, and developing meaningful connections – and we were delighted to receive such positive feedback from attendees.

“It was a great opportunity for families to share their experiences and highlight some of the unique challenges they face like having to explain their child’s condition to different professionals over and over again for example. This conference has given us even more valuable insight as we continue to advocate for better resources and support for families affected by rare conditions and ensure that parent carer voices are heard and listened to.”

Other organisations attending the conference included the NHSCT Carers Hub, C&YPSP Department of Health, NICHI Health Alliance, SENSE NI and Children in Northern Ireland (CINI).

Find out more about Contact in Northern Ireland.

Following the success of Contact NI’s rare conditions conference in January, a second event has been announced for next month in Northern Ireland.

“Supporting Children and Families living with Rare Diseases in Northern Ireland” will take place on Wednesday 15th May from 9.30am-1.30pm at the Dunsilly Hotel in Antrim.

Book your free place by using our Eventbrite page.

The free half-day conference is open to anyone caring for or supporting a child or young person with a rare condition. It will bring together parent carers and professionals to share experiences, find out about information and resources, and create a space for conversations and connections.

During the event, Contact will be launching a new report detailing some of the key findings from our January conference. The programme also includes taster workshops for parent carers and professionals, a Q&A panel discussion, and an exhibition hall where a number of local and national organisations will be on hand to offer information and support. The conference is being delivered in collaboration with the Northern Ireland Rare Disease Partnership, the Pears Foundation and Dormant Accounts Funding NI.

A free buffet lunch will also be provided at the end of the morning.

For more information and to book a place, please visit our Eventbrite page.

On Wednesday 22 January, Contact NI brought together parent carers and practitioners for a free conference, “Supporting families with rare conditions across Northern Ireland”.

The half-day event aimed to open up dialogue and collaboration towards improving health and wellbeing outcomes for parent carers of children with a rare condition. The event was a combination of open discussions and guest talks.

A total of 43 people attended, with an even mix of parent carers and professionals.

A range of guest speakers

Participants first heard from Caroline McFerran of the Northern Ireland Disease Partnership (NIRDP), one of our two partner organisations for the event, alongside the Pears Foundation. Caroline introduced us to the charity’s ‘Rare Stories –  Voices of the 1 In 17 project’. She also spoke about the story of Saul, who lives with Spondyloepiphyseal Dysplasia Congenita (SED).

Also speaking at the event were parent carers Ann-Marie Hoey and Claire O’Hanlon. Ann-Marie is mum to identical twin daughters living with the rare genetic condition PKU. Claire O’Hanlon is mum to Luke, who lives with Duchenne Muscular Dystrophy.

Claire is an experienced business mentor, charity founder and MBE recipient for her services to Muscular Dystrophy campaigning and fundraising. She spoke about ensuring that the lived experiences of parent carers are valued and listened to when services are designed and delivered.

Discussion groups brought frustration, but optimism too

Before the conference, participants were asked to consider three key questions around co-production, family support, and training and support for practitioners. During the event, parent carers, practitioners and staff from Contact and NIRDP formed breakout discussion groups.

Attendees highlighted persistent challenges, including the postcode lottery in accessing support services and waiting lists for diagnosis and support. Frustration over bureaucratic hurdles and a lack of awareness about rare conditions in certain settings, such as A&E, resonated strongly. Practitioners also felt frustrated by red tape and wanted to better understand the experiences of families in navigating services.

Despite the challenges faced, there was optimism about the potential for positive change in practice and policy.

Overwhelmingly positive feedback

Catherine Murnin, Associate for the Business Development team at Contact said: “The event underscored the importance of ongoing support, understanding, and advocacy in navigating the challenges parent carers face. We gained a lot of valuable insight, which we plan to follow up on with the relevant organisations and services to keep the momentum building. We were delighted with the attendance and feedback, and thoughts are already turning to a follow-up event in the future”.

Feedback from attendees was overwhelmingly positive and highlighted how much they valued the opportunity to share their experiences:

“This was one of the best events I’ve attended to give us a balance of information, social time, learning with others and hope that something might change for the better.”

“I was a bit nervous about coming along today as I am new to my role, but felt welcomed and learned a lot from what the parent carers shared. I hope this will improve my practice and how I share with other professionals”.

“It felt like something special happened today. Listening, laughing and having a chance just to talk with others. I enjoyed the informal discussions over the comfort break and lunch. Everyone was so supportive and I would like to join something else again in the future”.

This January, our team in Northern Ireland is bringing families and practitioners together for a free half-day conference for the rare community.

“Supporting Children and Families living with Rare Diseases in Northern Ireland” takes place on 24 January in Dungannon, 9.30am to 1.30pm. Contact Northern Ireland is running the event in collaboration with the NI Rare Disease Partnership and the Pears Foundation.

For parent carers, this will be your opportunity to connect with other families, share experiences and hear from professionals working in the field. You’ll find out more about the support and resources available.

Sessions will include parent/practitioner forums, a talk from a Rare Disease Nurse, and a keynote presentation from Claire O’Hanlon MBE about her lived experience as a parent carer. Interactive group discussions will look at what services are doing well and what could be done better. And we’ll explore how everyone in the rare disease community can work together to improve the experiences of families. Lunch will also be provided at the end of the morning.
For more information and to book a place, visit our Eventbrite page.

The Department of Health has recently commissioned a report into social care services in Northern Ireland and made a number of recommendations for improvements.

We will be responding to this report, and we want to include the views and experiences of families with disabled children in Northern Ireland.

What are the recommendations?

There are 53 recommendations in total. They address the range of issues currently facing the services and how best to meet the needs of children and families who access them. 

Our response will focus on the following six recommendations:

Share your thoughts with us

If you have ever used any of the services mentioned or they’ve affected you in some way, we would welcome your thoughts.

We want to know whether you agree with these recommendations, as well as your views on how to improve them. Please feel free to comment on as few or as many as you see fit.

If you would like to contribute to our response, please email Susan Walls, Head of Programmes, at by Thursday 30 November at 12 noon.

You’ll find full details of the report, the recommendations and the consultation questions on the Department of Health website. You can also share your views directly on any of the 53 recommendations and see the 66 consultation questions in full. (You don’t need to answer every question). Use the link above and select “Consultation Questionnaire” before 1 December 2023.

More information

Visit our social care web pages for more information and advice on accessing practical support for your disabled child.

Visit our Contact Northern Ireland to stay up-to-date with our local team.

The Department for Communities has confirmed that the process of asking existing means tested benefits claimants in Northern Ireland to move onto Universal Credit – known as managed migration – is starting this month.

Initially, this will only apply to claimants who only receive Child Tax Credit or Working Tax Credit and not any other means-tested benefits. The Department for Communities says that it will be randomly selecting ‘tax-credit-only claimants’ and sending them managed migration notices.

This will be happening in all Northern Ireland postcode areas.

What happens after I receive a managed migration notice?

You will not be moved onto Universal Credit automatically – instead, you will need to make a claim. You will be sent a letter telling you that your existing legacy benefits are ending and asking you to claim Universal Credit. This is known as a managed migration notice.

The notice you gives you a deadline by which you need to claim Universal Credit. This is normally at least 3 months from the date of your managed migration notice.

Your legacy benefit payments will stop on the date you claim Universal Credit, or on your deadline day if you haven’t lodged a claim for Universal Credit by then. If you haven’t claimed by your deadline day, you will have a further month within which to claim Universal Credit (although your legacy benefits will have already stopped). This is known as your final deadline.

So long as you claim by your final deadline, you will be eligible for transitional protection payments to make sure that you are no worse off on Universal Credit.

More information about moving onto Universal Credit

You can take a look at our online information for more advice about the Universal Credit managed migration process, or use the Benefits Calculator to see what other benefits you may be eligible for.

At Contact, we wouldn’t be able to do what we do without the insight and support of parent carers just like you. We are now looking for two new people to join our board of trustees and play a crucial role in steering our fantastic charity.

With our new CEO, Anna Bird, at the helm, this is a brilliant time to join our Board and make a real impact. 

We’re particularly looking for:

Watch our vice chair of trustees, Angela, talk about why she volunteers for us:

Interested in applying?

If you are a parent carer and think you could have the skills and qualities we’re looking for, we’d love for you to apply!

Find out more about the role and apply to be our trustee based in Northern Ireland.

Or find out more and apply for the fundraising trustee role.

The deadline for applications is 9am on Friday 21 July.

See all our current vacancies.

The Education Authority is holding a series of engagement events for parents and carers to learn more about plans to improve the special educational needs (SEN) system in Northern Ireland.

What is the SEND Transformation Programme?

The Education Authority has established the SEND Transformation Programme to follow through on recommendations for change that various reports have made over a number of years.

The vision for the programme is that all children and young people with SEND and their families receive the right support, at the right time, to reach their educational goals and get the best possible start in life.

The programme comprises a number of different projects, some of which are already underway. You can read more about the ongoing projects.

What are the engagement events?

The Education Authority is putting on a series of information events where parent carers can find out more. The events are also an opportunity to share your views and experiences.

Each event will have two sessions. The first session will provide advice and information on general concerns relating to SEN. The second session will introduce parents and carers to the SEND Transformation Programme.

When and where do events take place?

The events take place this week and next. There is a combination of face-to-face and online events.

Parents and carers are welcome to attend both sessions. If doing so, you must complete a registration for each session.

You can see a full list of events on the Education Authority’s website. Book your place using the button at the top of the page.

Households in Northern Ireland will today start to receive a £600 payment to help with winter energy costs.

£400 of the total is made up of an energy bill support scheme payment. Households in the rest of the UK started to receive the payment in October 2022.

Northern Ireland households will receive an additional £200 Alternative Fuel Payment. The government is paying this to all households given the high proportion that use alternative fuels.

Whereas families in England, Scotland and Wales will receive £400 in six instalments up to March 2023, families in Northern Ireland will receive £600 in one payment.

How you’ll receive the payment depends on how you pay for energy. Find out more at

Our Contact Northern Ireland team are holding four children’s events for the whole family this winter.

Join us this winter for relaxed, accessible Christmas fun!

Places are limited! Book now to save your place.

Millennium Forum – Cinderella relaxed performance

Saturday 10 December, 2pm

Join us in a relaxed atmosphere to see the Cinderella panto (unfortunately the seats that have been assigned are not suitable for wheelchair users).

Register on Eventbrite.

Galgorm – A fairy magical Christmas

Saturday 10 December, 11am-3pm

Enjoy the live character trail, meet Santa, Elsa hosted entertainment, train ride, carousal and fun house, storytelling, reindeer food.

Register on Eventbrite.

Glenpark Estate Omagh – Relaxed meet Santa

Monday 19 December, 5.30pm and 6.30pm

Visit Santa, enjoy story-telling, writing letters, meet the reindeers, tractor ride (suitable for standard wheelchair) and enjoy a delicious hot chocolate.

Register on Eventbrite.

We are delighted to share that Contact has been awarded a £39,098 grant from the Dormant Accounts Fund NI to help strengthen the future of our support services for families with disabled children in Northern Ireland.

Importantly, this funding will enable us to pilot new income streams which will ensure Contact can continue to be there for Northern Ireland families in the long term.

Kate Beggs, The National Lottery Community Fund’s Northern Ireland Director, said: “We are pleased to award a grant of £39,098 from the Dormant Accounts Fund NI to Contact a Family, to deliver support to families with a child that has a disability in a more flexible, cost-effective way, in order to strengthen their financial resilience. 

“Money from Dormant Accounts is helping to secure the future of voluntary, community and social enterprise organisations across Northern Ireland. It is building their capacity, resilience and sustainability, so that they can continue to deliver vital services to local communities.” 

Mark Davies, Director of Income Generation at Contact, said: “We are delighted to have been awarded the grant from Dormant Accounts Fund NI. It provides an exciting opportunity to help us build for the future by growing our income streams to enable us to continue to support families with disabled children in Northern Ireland for many years to come.” 

Visit our Northern Ireland webpage to find out more about our work or to get in touch our team. 

The Northern Ireland Government has announced it is to provide £12.6 million to fund summer holiday food grants this year.

How much will my family get?

Under this new scheme, families in Northern Ireland who have children entitled to free school meals will receive £13.50 per eligible child per week throughout the summer.

The payments will be made between 1 July and 31 August 2002.

Who is eligible for the scheme?

A child will be eligible for the payments if they are entitled to free school meals at the end of June 2022.

Which children are eligible for free school meals?

Children in Northern Ireland are eligible for free school meals if they are in full time education and their parents receive one of the following benefits.

A child is also eligible if their parents don’t get one of these benefits, but they have a statement of special educational needs and is designated to require a special diet. A child is also eligiblewhere you are an Asylum Seeker supported by the Home Office Asylum Support Assessment Team (ASAT).  

To apply for free school meals if you have not already done so, visit

Related information

Read more about help with education costs, help with money and debt and benefits and tax credits.

Find out more about our team in Northern Ireland.

The Department for Communities in Northern Ireland has confirmed that it is introducing a new Child Funeral Fund.

This is to help bereaved parents meet the costs of a funeral on the death of a child under 18 or in the event of a still-birth after 24 weeks.

The Child Funeral Fund will make a one-off lump sum payment of £3,056 towards funeral costs, paid to the parent or to the funeral director for a basic funeral. The fund will not be means-tested, which means anyone can apply regardless of their income or savings. 

Detailed information on how to apply is not yet available. However, new regulations make clear that will come into force on 1 June.

These regulations also make clear that parents won’t receive the payment if they’ve already received a payment for the funeral under Northern Ireland’s means-tested funeral expenses payments scheme.

For more information about the new fund, visit the Department for Communities website.