making muscle wasting history

Lobby of Scottish Parliament 2009
03 June 2009

Return to DeanWidd profile

Wednesday 3rd June 2009 saw Action Duchenne families and supporters come to Holyrood to lobby the Scottish Parliament. It was the largest turnout to date with around 60 people in attendance, including media coverage from STV and the BBC. The day was also recorded by the BBC as Eileen McCallum, River City TV actress and grandmother of 2 boys with Duchenne, is presently doing a documentary to be aired in due course focused on boys living with Duchenne.

After the families had congregated for pictures and speaking with the media and press, we moved into the parliamentary building where some families were able to meet with their MSP to discuss the issues raised in the lobby document surrounding standards of care and a centre of excellence.

After a light buffet the lobby meeting took underway at 1:30pm with MSP Christopher Harvie, who kindly sponsored the event, making an opening speech. This was then followed by a moving speech by Daniel Matheson who spoke about the difficulties that he and his younger 2 brothers, John and James who also have Duchenne, face day to day living with the condition. I followed this with a presentation explaining how care standards in Scotland are failing our son’s needs and the need for a centre of excellence. Eileen McCallum then followed this presentation with her speech talking about the highs and lows of being a grandparent and trying to help support her family and 2 grandchildren who have Duchenne. Nick then spoke about the prospect of delivering personalised medicine regimes for individual patients using steroids and heart drugs in combinations with new drugs like PTC 124 and AVI morpholinos. Nick wanted to emphasise these medicines could significantly slow the progress of the severe muscle wasting while we look for the magic bullet drug to cure Duchenne. Dr Karen Naismith spoke last about the progress that has been made with Scottish Muscle Network and the idea of having 5 clinics in Scotland to expand the network with teleconferencing offering a way for Duchenne patients to access clinical and medical expertise.

Once the presentations and speeches were done the Public Health Minister, Shona Robison and the First Minister, Alex Salmond, joined the meeting. John Miller’s grandson, Lee, took great pleasure in handing over the signed petitions to both parties. It was a fantastic opportunity to have both the Public Health Minister and the First Minister attend so they could hear the concerns and difficulties the families are facing in Scotland while also meeting boys with the condition so they could see how the boys are affected by Duchenne.

Public Health Minister, Shona Robison, opened the floor to questions after delivering a speech focused on the review of the 5 clinics that the SMN and the MDC have proposed. Nick and parents voiced their anger at this prospect and demanded that the only way forward was to ensure a centre of excellence was put in place within Scotland. Clinicians from the SMN have argued that a centre of excellence is not the way forward as families would not be prepared to travel a long distance to a centre. However, parents such as Alan Ross, who traveled over 4 hours to be at the lobby from Invergordon, dispute this and advised that travelling to centre of excellence in Scotland would certainly not be problem. Every parent wants to ensure that their son is receiving the best medical care possible and prolong their son’s life expectancy. A centre of excellence with a multi disciplinary team delivering high standards of care as outlined by the Treat NMD would provide this and ensure boys in Scotland would be finally receiving what they need.

As Nick outlined on his page regarding the lobby it is shame that the Public Health Minister did not take this argument on board. Rather she has agreed with the Muscular Dystrophy Campaign and the Scottish Muscle Network to undertake a review of neuromuscular services in Scotland. She agreed this early this year and it has still not even started. The reports and proof from Denmark prove high care standards and a centre of excellence gives Duchenne patients quality of life. So why try and do something different!

We are all aware that time is something so valuable to our children and the Health Minister is asking that our boys give this valuable time up to see if virtual conferencing will work over 5 clinics in Scotland. It will not work as we need Duchenne expertise in one place so that teams of neuromuscular consultants, physios, cardiologists, respiratory consultants, endocrinologists and others get to know in detail how Duchenne is affecting our children and men with Duchenne.

Due to the way the Public Health Minister is looking to take things forward I have asked for a further meeting to be scheduled so that our argument can be taken further. I will update on the site as to how this meeting goes.

I want to thank all the families and supporters for coming along on this day and helping to support the fight. The more people we have come to lobbies such as these the louder our voice becomes and gets heard. A big thanks to MSP Christopher Harvie for supporting our lobby, John Miller for chairing the meeting and ensuring things ran smoothly, Daniel Matheson for his touching speech, Eileen McCallum for not just her speech but helping raise awareness of the condition and problems via the ongoing documentary, Dr Karen Naismith for her input from the SMN, Vici Richardson for helping compose the lobby and standards of care documents and finally Nick for saying what is all on our minds to the Health Minister and ensuring we keep up the fight.

Please ensure your efforts on the day are not forgotten. Take the time to ensure your MSP has read the lobby and standards of care document given on the day. See if you can meet your MSP to discuss things further and even get some press coverage.
We must and will not stop until we get what our sons deserve and need. Let’s keep the action going.

Sponsor This Event