NI Rare Disease Partnership

The Northern Ireland Rare Disease Partnership (NIRDP) are thrilled to introduce their newly devised education and upskilling programme, “Understanding Rare”. This initiative is designed to foster a deeper understanding and empathy towards the unique needs of the 1 in 17/110K individuals (many of which are children) living with rare diseases or conditions in Northern Ireland, and many of whom experience acute mental health/financial/work/housing or isolation needs alongside carers or family members who are also experiencing these challenges. Some of these “Rare Stories” can be found here

NIRDP understand that mental health providers and Helplines NI (of which we are also a member) play a pivotal role in offering support and guidance to these individuals. Therefore, we have crafted a free 1.5-hour remote learning Continuing Professional Development (CPD) session that aims to equip mental health or helpline and support staff with the necessary knowledge and skills to address their needs more effectively.

Through this short programme, participants will be better prepared to:

  • Understand the complex needs of those with rare diseases in our community.
  • Empathise with their unique challenges and experiences through the sharing of Rare Stories
  • Signpost more successfully to organisations like the NIRDP or other rare condition organisations, facilitating a network of comprehensive support.

NIRDP are pleased to inform you that this initiative is generously funded by the Community Foundation/DOH in Northern Ireland, a testament to the significance and potential impact of this programme. We kindly then encourage you to share this invaluable opportunity with your staff, colleagues, and those in your organisation responsible for supporting CPD initiatives. For further information or to express your interest, please do not hesitate to contact us directly or share this email with colleagues within or beyond your own organisation that may find this matter of interest, especially in training or HR departments.

 

 

CCP Regional Conference: Caring for yourself and others – Nurturing connections for wellness

Working with young children is acknowledged as being challenging both physically and psychologically. Even so, Early Years Educators demonstrate very high commitment to the children in their care. However, you cannot pour from an empty cup, and in this Keynote Mary explains the impact of stress on our lives, and looks at how Educators can support their own wellbeing and avoid burnout. Participants will also have the opportunity to attend 2 of 3 workshops, details of all workshops are on page 2.

Download Conference Flyer 

Conference details: 
Date: Thursday 29th February 2024
Time: Registration from 9am, the conference will take place 9.30am – 3pm
Venue: Tullyglass Hotel, Ballymena

 

How are Children and Young People Doing in Northern Ireland?

We have just published our NI outcome monitoring report 2021 full of multi-agency population/census data. Download your copy now at tinyurl.com/bdhfun6c This is a great resource for assessing need, planning & evidence for funding opportunities.

 

This 11th Outcome Monitoring Report shows how children and young people in Northern Ireland are doing in relation to the Government’s eight outcomes and covers the period 2015 up to 2022 (where available) The report presents the information collected against agreed indicators for each outcome, providing trend analysis over time and comparison across geographical sectors.

This report will be kept as a live report under the publications page on the CYPSP website with information being updated as it becomes available we have highlighted in the index  where we are still awaiting data.

Prof Ray Jones’ Visit to Upper Springfield/Whiterock Family Support Hub

On 5 July 2022, the Upper Springfield/Whiterock Family Support Hub were delighted to welcome Prof  Ray Jones – Emeritus Professor of Social Work at Kington University and St George’s, University of London and a registered Social Worker.

It was an amazing opportunity for some of the families and services providers in the Upper Springfield/Whiterock lead body organsiation – the Whiterock Children’s Centre to speak with Prof Jones who has over 50 years experience in social care and as a Social Work Practitioner, manager, teacher and researcher and in 2022 appointed to undertake the Independent Review of Children’s Social Care in North of Ireland.

Over the last 50+ years Prof Jones has been involved in an advisory capacity on a range of issues, inquiries, written books and research and has a wealth of experience and accomplishments to date.

Prof Jones’ visit to Whiterock Children’s Centre was a wonderful opportunity for families, service providers and Upper Springfeld/Whiterock Hub and lead organisations to give an insight into the diverse range of services and partners that come together to help make an amazing Hub!.

Upper Springfield/Whiterock Hub mantra – “we are only as good as those services around the table” is something that the Hub feel strongly about and they have continued to build upon from when the Hub was established in 2014.

The morning discussion focused on the strength in service providers coming together and working together – community, statutory and voluntary to provide the best possible bespoke support to suit the needs of each family how contact Upper Springfield/Whiterock Family Support Hub.

Families also spoke at length about the Upper Springfield/Whiterock Family Support Hub, the level of support and services provided by the core and associate members and how such support made a huge difference in their lives as a family.  Such experiences noted included help with social isolation, integration into new area/community, practical support, counselling, emotional and behavioural support for adults and children, help for those families awaiting assessment etc.

For the Hub, it was a humbling experience to hear just how such services have helped some of their families and the Hub were hugely grateful that families took time to note their own personal experiences in such an open forum.  At times it was very moving meeting and a privilege for Hub staff/service providers to hear some of the individual experiences from those present.

Hub staff and service providers look forward to reading the independent review and will continue to build upon the good work of the Upper Springfield/Whiterock Family Support Hub in the time ahead, as  they are only too aware that families need such Family Support Hubs and it is likely that the demand will only increase in the months ahead.

 

 

 

 

 

 

Family Support Hub Celebration Event – June 2022

On 24 June 2022 the CYPSP Support Team, Family Support Hub (Hub) Coordinators, Hub members and other integral Partners came together for the first time since 2018, to reflect on and celebrate the work of the Hubs with particular focus on the work of the Hubs and members during the pandemic.

The day also provided an opportunity for Bronwyn Campbell to meet Hub Coordinators in person for the first time since taking up the role of Regional Family Support Hub Coordinator within the Health & Social Care Board (now SPPG/DoH) at the beginning of January 2022.

Aidan Dawson, Chief Executive of the Public Health Agency and CYPSP Chairperson, opened the event, reflecting on the achievements of the Hubs.

Valerie Maxwell (Children’s Services Planning & Information Manager, SPPG/DoH) presented an animated video summarising the 2021/22 Annual Report, before Bronwyn Campbell addressed the Coordinators.

Presentations followed from Coordinators and Hub members – Lisa Grant (Craigavon & Portadown Hub), Alison Slater (Newry Hub), Joanne McCourt (Belfast Central Mission), Claire Larkin (Northern Area Hubs) and Sharon Nelson (Springfield & Whiterock Hub) who showcased how they adapted and changed their services in creative ways to enabled them to continue to meet the needs of the families and young people despite lockdown.

James Gallagher from Lifeline gave a fantastic presentation on “Caring for the Caregiver” and Eugene Mone from Barnardo’s brought along the Sensory Overload Virtual Reality Experience, a really powerful and thought provoking piece of work.

After a group exercise facilitated by Maxine Gibson (Children’s Services Planning Professional Advisor, SPPG/DoH) looking at what Coordinators seen as the challenges facing the Hubs in the next 12 months and how to rise to these challenges, the event was brought to a close by Maurice Leeson (Programme Manager Partnerships, Emotional Health & Wellbeing, CAMHS and Disability, SPPG/DoH).  This was particularly fitting given that Maurice played such a central role in the establishment of the Hub Network.