Chamber
Meeting of the Parliament 09 December 2010
09 Dec 2010 · S3 · Meeting of the Parliament
Item of business
Sudden Arrhythmia Death Syndrome
I, too, congratulate Jim Hume on securing this important debate, and pass on my condolences. He is determined to continue to press the issue in difficult times.
Members will be relieved to hear that I do not intend to make a long speech, but I would like to follow on from what Christine Grahame said and make a couple of relevant points.
I recognise the critical role of sudden arrhythmia death syndrome campaigning groups and the way in which such groups can inform and shape health policy more generally. In particular, I want to mention the Cardiomyopathy Association and the Scottish support group because of the critical role that they have had in highlighting important issues. There is often campaigning activity and determination to raise issues in times of great personal loss. People are driven and focused even when they face the most tragic circumstances, and they determine that what has happened should not happen to somebody else. I stand in awe of everybody who is able to do that in the face of such thoughts. They are able to look at their experience, to determine that others should not experience the same, and to try to progress things.
I want to mention Irene and Bob McConnachie, who are constituents of mine and are now friends. They lost their son and had a particularly traumatic experience following that loss. They were to be tested to see whether there was anything in their genetic make-up, and the journey proved to be horrendous for them. It involved having to go, until very recently, for screening and testing and follow-up work in London. They realised then the extent to which the medical profession is unaware of the condition’s potential to affect the broader family. Perhaps we are not talking about across-the-board screening, but family screening where there has been an impact on the family and finding a way of supporting people through it are critical. It is understandable that there is a lot of coverage in newspapers when a high-profile footballer or athlete loses their life as a result of the condition, but the question is what should be done for the broader family to find out whether they are at risk as well and whether they can be supported.
I recognise that there has been a significant development in Scotland. Bob McConnachie, whom I mentioned, is in a group that has been developing the familial arrhythmia network for Scotland, which has done a presentation to Helen Eadie’s cross-party group on heart disease and stroke. The critical issue for it is supporting families and bringing together clinical geneticists, cardiologists and families to try to develop protocols so that people do not have to go on the horrendous journey that my constituents went on. I would welcome any comments or information from the minister on how that work is being progressed. As in many other areas, people’s energies, commitment and understanding are being harnessed so that they can come together and say where there is a flaw or gap in health provision. The health professionals can then respond in a positive way and, critically, maintain understanding and awareness of issues among our young people and, more broadly, among families and the medical profession.
I commend Jim Hume for his motion, and everybody who has continued to make all the political parties focus on the matter, and would welcome an update from the minister on how matters are being progressed at Scottish Government level.
17:18
Members will be relieved to hear that I do not intend to make a long speech, but I would like to follow on from what Christine Grahame said and make a couple of relevant points.
I recognise the critical role of sudden arrhythmia death syndrome campaigning groups and the way in which such groups can inform and shape health policy more generally. In particular, I want to mention the Cardiomyopathy Association and the Scottish support group because of the critical role that they have had in highlighting important issues. There is often campaigning activity and determination to raise issues in times of great personal loss. People are driven and focused even when they face the most tragic circumstances, and they determine that what has happened should not happen to somebody else. I stand in awe of everybody who is able to do that in the face of such thoughts. They are able to look at their experience, to determine that others should not experience the same, and to try to progress things.
I want to mention Irene and Bob McConnachie, who are constituents of mine and are now friends. They lost their son and had a particularly traumatic experience following that loss. They were to be tested to see whether there was anything in their genetic make-up, and the journey proved to be horrendous for them. It involved having to go, until very recently, for screening and testing and follow-up work in London. They realised then the extent to which the medical profession is unaware of the condition’s potential to affect the broader family. Perhaps we are not talking about across-the-board screening, but family screening where there has been an impact on the family and finding a way of supporting people through it are critical. It is understandable that there is a lot of coverage in newspapers when a high-profile footballer or athlete loses their life as a result of the condition, but the question is what should be done for the broader family to find out whether they are at risk as well and whether they can be supported.
I recognise that there has been a significant development in Scotland. Bob McConnachie, whom I mentioned, is in a group that has been developing the familial arrhythmia network for Scotland, which has done a presentation to Helen Eadie’s cross-party group on heart disease and stroke. The critical issue for it is supporting families and bringing together clinical geneticists, cardiologists and families to try to develop protocols so that people do not have to go on the horrendous journey that my constituents went on. I would welcome any comments or information from the minister on how that work is being progressed. As in many other areas, people’s energies, commitment and understanding are being harnessed so that they can come together and say where there is a flaw or gap in health provision. The health professionals can then respond in a positive way and, critically, maintain understanding and awareness of issues among our young people and, more broadly, among families and the medical profession.
I commend Jim Hume for his motion, and everybody who has continued to make all the political parties focus on the matter, and would welcome an update from the minister on how matters are being progressed at Scottish Government level.
17:18
In the same item of business
The Deputy Presiding Officer (Trish Godman)
Lab
The final item of business is a members’ business debate on motion S3M-7393, in the name of Jim Hume, on sudden arrhythmia death syndrome—SADS. The debate wi...
Jim Hume (South of Scotland) (LD)
LD
I thank members who have remained behind to participate in the debate. I also thank those who signed my motion in order to make the debate possible. Among th...
Christine Grahame (South of Scotland) (SNP)
SNP
I congratulate Jim Hume on bringing the debate to the chamber; I know that he has had a difficult day, so I congratulate him even more for staying the course...
Johann Lamont (Glasgow Pollok) (Lab)
Lab
I, too, congratulate Jim Hume on securing this important debate, and pass on my condolences. He is determined to continue to press the issue in difficult tim...
Nanette Milne (North East Scotland) (Con)
Con
I am pleased that Jim Hume has brought to members’ attention once again sudden arrhythmia death syndrome, and I congratulate him on securing the debate. I al...
Dr Richard Simpson (Mid Scotland and Fife) (Lab)
Lab
I, too, welcome the opportunity to participate in the debate, and I congratulate Jim Hume on obtaining it and on pursuing the issue. SADS is a pretty horrend...
Christine Grahame
SNP
I understand the member’s point about the mandatory aspect, but I seek his advice. Is it not the case that such tests would be mandatory for young men who we...
Dr Simpson
Lab
Yes, certainly. Those of my age can remember a certain footballer—I have forgotten his name for the moment—who, on being transferred to Manchester United, wa...
The Minister for Public Health and Sport (Shona Robison)
SNP
I, too, thank Jim Hume for introducing this very important debate. I recognise his very direct and personal interest in this serious and complex issue.The su...