Guidelines for communication with TDs.

For the next stage of the campaign, we would like you to lobby TD’s from the bordering counties in the Republic of Ireland.  TD’s are the equivalent of our MLA’s for RoI. The most important thing to remember is that a template for shared border services already exists through cancer treatment at Altnagelvin Hospital.

Children’s Heartbeat Trust and the Minister of Health Edwin Poots are both keen that an all-island surgical network emerges.

By communicating and if possible, requesting a meeting with border TD’s we can make sure they are fully aware of all the issues (outlined below) which focus on standards of surgery, safety and sustainability.

When emailing and writing to TDs, it is important to remember:

1. They are not elected for any area within Northern Ireland, and do not represent any families or children currently impacted by the Northern Ireland review.

2. While there are more TDs than MLAs, they represent many more people – busy offices mean they may not be as quick to respond as MLAs

3. While many are familiar with cross-border issues, especially in Donegal with respect to the shared cancer facility, not all people you write to may be briefed on the issue, so include a little bit of background about the review in Northern Ireland and the Hands Up campaign.

4. If it is feasible for you to attend a meeting with a TD, suggest a meeting either in the local office or if possible in Dublin – TDs are in Dublin every week and travelling to Dublin from certain areas in NI could be quicker and easier for you than travelling to their constituency offices.

5. In your correspondence highlight why protecting children’s heart surgery in Northern Ireland is important for your child and your family.  Note your personal experiences and why you believe a network solution in partnership with Our Lady’s Hospital, Crumlin in Dublin is the best way forward.

6. The charity will also be writing to seek meetings, please acknowledge this in your letter or email.  If you are requesting a meeting, please make it clear it is an additional meeting. More meetings ensure they know the issue has widespread support.

7. You can also contact any local MLAs you’ve engaged with successfully, make them aware you’re now contacting TDs also, and see if they can offer support. Many border TDs know and work with NI MLAs, and in the case of Sinn Fein, are the same party.

8. Be confident!   The campaign so far has made sure that surgery will not be shifted to England, and the Minister has publicly agreed with the charity on the importance of a Dublin/Belfast network in preference to a shift to Dublin. Make it clear that the issue you’re writing about HAS political support in Northern Ireland and from Southern Health Minister James Reilly who said he would be happy to explore options for Dublin AND Belfast.

Please also keep Sarah up-to-date on communication, letters and any meetings.

TD’s

There are nineteen border TDs, based in 5 border constituencies. All of these, with the exception of Louth, are closer to Belfast than Dublin, or include areas that are closer to Belfast than Dublin.

The table below gives contact details for these TD’s

Speaking following the announcement that the entire Safe & Sustainable process has been suspended by UK Secretary of State for Health, Children’s Heartbeat Trust Executive Officer Sarah Quinlan said:

“The HSC in Northern Ireland now has serious and important questions to answer about the decision to invite the Safe & Sustainable team to Northern Ireland to carry out a review of paediatric cardiac services here. Today’s news that the entire process in GB is now suspended, that planned closures of three surgical units in England will not take place and that a review should be co-ordinated with adult services vindicates the long-held view of local clinicians, medical staff and families that the Safe & Sustainable guidelines did not guarantee safety or sustainability,” she said.

“Today’s report from the Independent Reconfiguration Panel includes 15 recommendations. The HSC now needs to answer these questions:

1. Why were the Safe & Sustainable team invited to Northern Ireland when a Royal College of Surgeons report only last year found that surgery was safe?
2. Lord Ribeiro’s report states that surgical teams should have at least four full-time surgical consultants. Will the HSC revisit its current recommendation which would see surgery shifted to Dublin which has three surgeons, and support the views of the families and the Minister which would see an all-island team comprising a team of four surgeons?
3. What steps will the HSC take to ensure co-ordination with adult congenital heart services? Lord Ribeiro’s report criticised the lack of co-ordination between children & adult services in England & Wales? These figures have not been included in the review process here Northern Ireland.
4. How will the HSC ensure safety through the entire care pathway as identified by Lord Ribeiro? As it stands there is no safe care pathway for children with problems not diagnosed before birth who live more than three hours journey from Dublin.

“It was the HSC’s decision to invite the now discredited Safe & Sustainable team to Northern Ireland in the first place. The team’s findings in England & Wales have now been rejected by a High Court judge, an independent panel of experts, and the Secretary of State for Health himself.

“Because of this decision, the RBHSC is now the only hospital in the UK or Ireland where the closure of children’s heart surgery is still on the table. The HSC should outline what steps they will take to ensure children and adults in Northern Ireland will benefit from standards recommended by Lord Ribeiro today,” she added.

The Lord Mayor of Belfast Gavin Robinson with SuperScanMan and Dr Paul Jackson (Clinical Director of RBHSC)

Children’s MRI Scanner Appeal hits £2 million target!

The Children’s MRI Scanner Appeal has reached its £2 million fundraising target for the purchase of an MRI scanner for the Royal Belfast Hospital for Sick Children. Today the Lord Mayor of Belfast, Gavin Robinson, has announced the success of the campaign in reaching this target, which has been achieved completely through a public fundraising campaign and local events.

The Lord Mayor said “It is wonderful to be able to make this announcement on behalf of the four charities involved in the Children’s MRI Scanner Appeal.  The success of this appeal can be directly attributed to the generosity of the Northern Irish public as the public’s fundraising and donations have raised the entire £2 Million needed.  An MRI Scanner will increase the access to MRI for sick children in Northern Ireland, and many more children will be able to benefit from this treatment as opposed to undergoing different types of investigation which may be invasive or involve radiation.

“This announcement is particularly significant for me as the Children’s MRI Scanner Appeal was one of my chosen charities this year. I am delighted to be the bearer of such good news – a perfect way for me to carry out my last public engagement on my last day as Lord Mayor”.

Four local children’s charities joined together for the Children’s MRI Scanner Appeal; Helping Hand, Carrickmannon MRI Scanner Children’s Appeal, the Northern Ireland Children’s Cancer Unit Fund and the Children’s Heartbeat Trust.  The Royal Belfast Hospital for Sick Children has been the only children’s hospital in the UK and Ireland not to have an MRI scanner, and this purchase will help in the treatment of sick children at the hospital.

Sarah Quinlan, Executive Officer of the Children’s Heartbeat Trust, said “The achievement of meeting the £2 million target is a huge success for the Children’s MRI Scanner Appeal. It means that the Royal Belfast Hospital for Sick Children can now obtain an extremely important machine, stopping the need to take difficult transfer to the adult facility in the hospital.   On behalf of the four charities I would like to thank everyone who supported the Children’s MRI Scanner Appeal.”

In the final installment of our video campaign, the Campbell family from Newry highlight the difficulties of having to travel away for children’s heart surgery. Please watch and share to help us make sure children and families are at the heart of any decision on the future of this essential service.

Watch their story at http://www.youtube.com/watch?v=bb-ipmGuv80

The plan is to meet at 12 noon in St Colum’s Park, L’derry for a picnic lunch which will be provided by the charity. We will have use of one of the Carnival tents for the lunch, but as we optimistically hope for summer sunshine please bring picnic blankets and we can enjoy lunch outdoors if weather permits.

Date: Sat 1 June
Time: 12 noon – 4pm
Location: St Colum’s Park, L’Derry.
Limavady Road, Derry-Londonderry, BT47 6JY – for a map visithttp://www.cityofculture2013.com/venues/st-columbs-park/

Oakgrove Integrated Primary School are kindly providing car parking for the charity beside the park, which will be available from 11.30 – 5.30 – Link to school below.

http://maps.google.co.uk/maps?hl=en&gs_rn=12&gs_ri=psyab&cp=10&gs_id=14&xhr=t&bav=on.2%2Cor.r_qf.&bvm=bv.46471029%2Cd.d2k&biw=1280&bih=705&wrapid=tljp1368551426675018&um=1&ie=UTF8&q=oakgrove+integrated+primary+school&fb=1&gl=uk&hq=oakgrove+integrated+primary+school&cid=0%2C0%2C10769600610755683727&sa=X&ei=B3CSUb6TA_S20QW0koGgBw&sqi=2&ved=0CG8Q_BIwAA

For further information please contact Claire White Ball (L/Derry group organiser) on claireball7@gmail.com/ 07817 620 831 or Sarah at sarah@childrensheartbeattrust.org/ 07584 164 815

Time is ticking for Antrim’s young heart

Local mother Katy Boyd and her 3 year old son, Olly, from Antrim, this week feature in a video campaign to retain children’s heart surgery at the Royal Belfast Hospital for Sick Children. When Olly was born he required immediate treatment for a heart problem that was not diagnosed before birth. He was transferred to the Clark Clinic at the Royal Belfast Hospital for Sick Children for a life-saving intervention, which was successful. The immediate nature of the treatment meant he would not have been able to travel any further and being able to access this specialist care in Belfast for him was vital.

The Health and Social Care Board recently recommended to the Minister for Health, Edwin Poots MLA that paediatric cardiac surgical services should in future be provided exclusively from Dublin. However, in a circumstance such as that of Olly’s it is clear that any move which sees the end of surgical provision in Belfast puts the lives of children born with a heart condition like his at risk..

The videos can be accessed via http://www.youtube.com/watch?v=7tY-3AGvVgY and you can follow the Children’s Heartbeat Trust on twitter @Chldns_Hrtbeat.

Sarah Quinlan, Executive Officer, Children’s Heartbeat Trust, said “Katy’s experience with the birth of Olly and the subsequent emergency surgery highlights the very real need for surgery to be kept in Belfast. Any weakening of the paediatric congenital heart service in Belfast will only increase the risks for babies, like Olly, that are born with undiagnosed heart problems. In these cases an additional transfer to Dublin greatly increases the risks, as the treatment must take place as soon as possible. Children like Olly show how critical it is that we retain some surgery in Belfast, and the importance of having a local surgical team.

“Our campaign already has huge support from the Northern Ireland Assembly from all parties, and 90 members have already signed our Hands Up campaign pledge to vote against any proposals which remove the surgery from Belfast. We welcome the recent commitment the Minister and his southern counterpart, Dr James Reilly, to look at Belfast as a location in an all-island network, and we urge them to give this full consideration, so that other families who find themselves in similar emergency situations to the Boyd family can benefit from safe and successful treatment in Belfast.”

The video features the Katy and Olly is one of four, in which they share their experiences of emergency intervention treatment at the Royal Hospital, Belfast. Katy and other families are asking people to contact the Health Minister to urge him to make the right decision. Other videos focus on the pressures of having to travel for treatment and the experience of families who have successfully been treated in Belfast.

http://www.youtube.com/watch?v=C_kHTJsVxls

North Antrim MLA Robin Swann’s son Evan was born recently and required emergency intervention to save his life. Here he talks emotionally about the birth and why congenital cardiac surgery should be kept in Belfast.

Make your voice heard and let Edwin Poots know how important it is we continue surgery in Northern Ireland.

Contact by email private.office@dhsspsni.gov.uk, Twitter @edwin_poots or write to

Department of Health, Social Services & Public Safety
Castle Buildings
Stormont
Belfast
BT4 3SJ

Speaking following yesterday’s meeting between Northern Ireland Health Minister Edwin Poots MLA and his southern counterpart Dr James Reilly TD, Children’s Heartbeat Trust Executive Officer Sarah Quinlan said:

“Paediatric clinicians across a range of specialties in Northern Ireland have been clear that if safety is to be prioritised, then the future provision of paediatric congenital heart surgery must involve the retention of surgery in Belfast as part of an all-island network. The Health Minister’s support for this option is clear and is welcomed by both clinicians and families.

“From the outset of this process Health Officials have indicated that such a solution is not possible. However, similar networks already operate effectively in other treatment areas here in Northern Ireland including cancer care, and also in paediatric congenital heart disease in Canada and the US, all with successful outcomes. There is no reason why an all-island network solution cannot be introduced,” she added.

“We welcome Dr James Reilly’s statement in Enniskillen where he indicated that he hopes to accommodate the surgical team in Belfast and that as much surgery is performed up here as is possible.

“Medical experts, Mr Poots and Dr Reilly have all now expressed the wish that an all-island network for future paediatric heart surgery is introduced. Let us hope that Health officials North and South, do not become barriers to this happening,” she added.