Parenting Forum Invitation to Patient Experience Workshop

January 25th, 2013
We have beena asked to share the below invitation from the Parenting Forum
 “Linked to the recent Health and Social Care Board consultation on the future of services for children in Northern Ireland who require heart surgery, Parenting Forum has been asked to facilitate a workshop focusing on the experiences of children and parents who have accessed services.
We would therefore like to invite you to a Patient Experience Workshop to be held in the Dunsilly Hotel, 20 Dunsilly Road, Antrim BT41 2JH (at Junction 1, map and directions attached) on Tuesday 5th February, time 7.00pm – 9.00pm. Refreshments will be available from 6.15pm and the workshop will last no more than 2 hours, beginning at 7.00pm.
The workshop will seek the views of parents who have experience of travelling to centres in Ireland and the UK for their child to receive cardiac surgery. The workshop will be an opportunity for you to share your views and opinions on developing a package of support for parents when travel and stay are essential for their child to receive the surgery s/he may need.
The event will take the form of an informal workshop with other parents who have had similar experiences. We hope to have as many parents as possible with experience of this situation at the workshop and would be grateful if you could respond to Pauline at Parenting NI (email pauline@parentingni.org or tel 028 9031 0891) by Thursday 31st January. Looking forward to hearing from you”

HANDS UP Campaign March starting at 11AM on 2nd February 2011

January 25th, 2013

**IMPORTANT NOTICE**

Our HANDS UP Campaign March is now starting an hour earlier than originally schdeuled – at 11AM from the doors of the RBHSC – Please arrive from 10.45am so we can start promptly and please spread the word about the earlier staring time. Thanks!

 

Campaign Update Mtg; Sun 27 Jan at 6.30pm; Dunsilly Hotel, Antrim

January 22nd, 2013

We have organised a HANDS UP Campaign update meeting on Sunday 27 January at 6.30pm in the Dunsilly Hotel in Antrim.

The aim of this meeting is to keep everyone up to date with any recent developments in the campaign and highlight what our next steps are. All are welcome, and if you can’t get a babysitter feel free to bring the kids along – we will have an entertainer on hand to help keep them amused!

HANDS UP March ; 2 Feb 2013, 11AM at doors of RBHSC – Linenhall Street

January 22nd, 2013

Our HANDS UP Demonstration March has been rescheduled for Sat 2 February – 11AM from RBHSC to Linenhall St

Please aim to arrive for 10.45am as we plan to leave promptly at 11am.

As before we will be putting on buses to bring participants down from across Northern Ireland.  The buses will be coming from Enniskillen, Craigavon and L/Derry.  To ensure a seat on the bus for you and your family please contact

Enniskillen – pick up Ballygalley r’about – pick up Portadown : Jennifer Keys 07745068571

L/Derry – pick up Dungiven – pick up Dunsilly r’about: Claire Ball 07817620831

Craigavon – pick up Lisburn: Mary Gowdy 07762317335

If there are other buses needed from a different area let us know and we will try and ensure that all those who what to come along and demonstrate for our safe children’s surgery in Belfast can!

 

 

Charity Consultation Response

January 15th, 2013

Children’s Heartbeat Trust submitted a substantial consultation response to the public consultation into the future of paediatric congenital cardiac surgical services in Northern Ireland, outlining what we believe is the way forward to ensure the continuation of a safe service for babies, children, teenagers and adults affected by congenital heart disease.

Click here to download our response

 

Public Meeting & HANDS UP March!

January 14th, 2013

 

Two dates for the Diary…

Sun 27 Jan at 6.30pm in Dunsilly Hotel, Antrim:

HANDS UP Campaign update meeting.  This is an opportunity to meet and get an update on the campaign to protect and enhance children’s heart surgery in Northern Ireland.  We will have a children’s entertainer at hand to keep the kids amused if babysitters aren’t forthcoming and you don’t want to miss the meeting!

Our HANDS UP Demonstration March has been rescheduled for Sat 2 February – 11AM from RBHSC to Linenhall St

Please aim to arrive for 10.45 am as we plan to leave promptly at 11 am

As before we will be putting on buses to bring participants down from across Northern Ireland.  The buses will be coming from Enniskillen, Craigavon and L/Derry.  To ensure a seat on the bus for you and your family please contact

Enniskillen – pick up Ballygalley r’about – pick up Portadown : Jennifer Keys 07745068571

L/Derry – pick up Dungiven – pick up Dunsilly r’about: Claire Ball 07817620831

Craigavon – pick up Lisburn: Mary Gowdy 07762317335

If there are other buses needed from a different area let us know and we will try and ensure that all those who what to come along and demonstrate for our safe children’s surgery in Belfast can!

**If the current demonstrations across Belfast continue until the date of our march we may have to cancel the march due to safety concerns**

 

Caravans open for bookings 2013

January 14th, 2013

The caravans are now opened for bookings for 2013!

**Please note that if uou and your family enjoyed a stay in our caravans last year then you can provisionally book now, but we will be unable to confirm the date until the end of February. This is to ensure that families who have not yet had an opportunity to have a holiday in the caravans are given priority**

We have two caravans available for the use of families in Northern Ireland. It can be difficult to travel far with a sick child and so these caravans provide a welcome opportunity to enjoy a break close to home!

The caravans are situated at Windsor Caravan Park, Dundrum Road, Newcastle and Silvercliffs Caravan Park, Clare Road in Ballycastle.

The caravans are both have 1 x double bedroom, and 2 x twin bedrooms, as well as a living area, dining area and kitchen. Each caravan also has a television in case it rains! The kitchens are stocked with, cups, plates, glasses and cutlery.

We do ask that those staying bring their own bedding, (sheets, pillows, quilts, sleeping bags etc,) tea towels and towels. The cost is £50.00 per week which runs from Saturday to Saturday.

The caravans are also available for weekends or long weekends from April to June and September, but only if not booked for the week.

Weekends not available during July and August.

The caravans can be booked through Maria Kennedy, our caravan booking secretary on 028 9147 3632 or email info@childrensheartbeattrust.org. Once a request is made a booking form and general rules will be sent out.

Opportunity to observe PCCS Working Group Meetings

January 3rd, 2013

The Paediatric Congenital Cardiac Services working groups start again from Friday 4th Jan at 12.30pm and continue every Friday for the next few weeks in the HSCB Headquarters, Linenhall St, Belfast.  If you would like to come and observe at the meeting tomo please let me know so can pass on numbers.  Either post below, email info@childrensheartbeattrust.org or call 07584 164 815

CONSULTATION RESPONSE DEADLINE – 5PM FRIDAY 21 DECEMBER

December 18th, 2012

FOUR DAYS LEFT  to get in your consultation responses on the future of children’s heart surgery – closing date Fri 21 Dec.
Remember you can email it to PCCSConsultation@hscni.net or post to Paediatric Congenital Cardiac Service Consulation, Health & Social Care Board, 12 – 22 Linenhall Street, Belfast BT12 8BS. If you are finding it difficult to fill in take a look at our guidelines which should help!

Teenagers & Young Adults Focus Group – Belfast – 19 December 7pm

December 14th, 2012

The HSCB have asked us to highlight that a final focus groups for teenagers and young adults has been scheduled for Wed 19 Dec 7pm – 8pm in Belfast. The aim of the focus group is to:

– Draw on the experiences of the participants
– Enhance understanding of issues highlighted within the consultation document
– Enhance understanding of the various options within the document
– Seek participants’ v

iews on the key questions contained within the consultation document
– To encourage participants to formally respond to the consultation by completing the consultation questionnaire.

This had gone out to a representative group of teenagers and young adults but the take up was quite low which is why we have now been asked to open it up. I know we have lots of teenager and adult patients coming through Clark Clinic and this is a good chance to have your say.

If you would like to attend this focus group could you please contact Claire Paterson at Participation Network by phone 028 9040 1290 or email – claire@ci-ni.org.uk.