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Nortern Ireland 1st Action Duchenne lobby 2009
22 June 2009

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Lobby of Northern Ireland Parliament
22 June 2009

A sunny monday 22nd June 2009 saw Action Duchenne's first lobby held at Stormont, Northern Ireland.

Around 25 people attended the lobby and meeting which proved to be a positive day. Chaired by Esther Derber the meeting opened with a speech from Dup MLA Michelle McIlveen on behalf of Jeffrey Donaldson. Dean Widd and Vici gave presentations surrounding the standards of care and what needs to achieved in Northern Ireland. This was then followed by a moving speech from Julie Dalzell who spoke about the struggles and heartache that she and myself Noel, we have faced since our son, Carter, was diagnosed with Duchenne. I think everyone in the room was appalled by what this family has been put through and the evidence given certainly highlights the requirement for change.

The Director of Secondary Care, Mr David Galloway, who was attending on behalf of the Health Minister, also gave a speech. He expressed his concerns at hearing of how things are presently in Northern Ireland and agreed that something needs to be done. Mr Galloway advised of how the First Minister has allocated £9 million to be spread over 3 years to help children with complex medical healthcare needs. £2 million of this budget has already been spent but the remaining £7 million is yet to be allocated and Mr Galloway said there needs to a structure for this spending and he is prepared to listen to what suggestions are put forward for the structure of spending this money.

Mr Galloway continued to say that the Belfast Trust has recently appointed a paediatric in neurology with the hope this person will be in position in September. This will replace the previous paediatrician who left in July 2008 who continued to work after retirement. It was also mentioned about a fourth position coming into practice in the later of this year.

Mr Galloway would like a meeting in September where Action Duchenne, clinicians and Dr Janet Baillie can discuss proposals and take things forward. The lobby has made steps forward and with this further meeting scheduled the concerns raised by parents will be focused on with the aim of getting a multi disciplinary team underway in collaboration with the Treat NMD standards of care in a centre of excellence.

I would like to thank all the families and supporters for coming along to support this lobby. Carter for handing over the signed petitions to both Mr Galloway on behalf of the Health Minister and also Mr David McCredie on behalf of the First Minister and Deputy First Minister. Julie Dalzell for a very touching and powerful talk from a parent’s perspective. Esther for chairing the meeting and ensuring everything ran smoothly and Vici for ensuring the standards of care and lobby documents were precise and detailed while also delivering a great presentation.

Please ensure that your MLA has a copy of these lobby documents and arrange to meet with them to discuss them. We must all keep moving forward and ensuring the issues raised continue to be discussed in Parliament. Feedback how it went on the Action Duchenne website under “your shout” and let everyone see the response you had. Working together we will make a positive change happen.

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