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Scottish Motor Neurone Disease Association Raising MND Awareness in the Scottish Parliament
Margaret Mitchell MSP was struck by the emails received and prepared a motion to illustrate the association’s needs among fellow members of the Scottish Parliament. Her motion gained cross party support resulting in a debate on the 20th of June. The debate couldn’t have taken place at a better time. It came a day before MND Awareness Day and provided the Association with opportunities to make an impression upon the public through the media. Stories regarding the debate and MND made the local and national press, voluntary sector publications and radio. Individuals with MND were interviewed to share their experience of living with the illness and the quality of care provided by the Association.
People with MND and their families travelled from throughout the country to be at the Scottish Parliament in Edinburgh on the 20th of June. There was an opportunity to meet with Margaret Mitchell MSP before entering the chamber. Her enthusiasm was obvious as she talked with supporters including people with MND, family members and carers of people with the illness before the debate. As members of parliament taking part made their way in to the chamber supporters took their seats in the public gallery to watch on with interest.
Minister for Public Health, Shona Robison was present with other MSPs concerned about care for people with MND in Scotland. Following Margaret Mitchell’s opening of the debate, speakers gave their statements. Christina McKelvie MSP, lost her father to MND. She appealed to the Minister to give the care services need for funding careful consideration and that the Executive should look hard at the possibility of providing funding directly or indirectly. Dr Richard Simpson MSP stated that even although the number of people affected by MND in Scotland is relatively small, health services should be aware of its implications and therefore the care needs of people should not be allowed to drop beneath the NHS radar. He concluded his statement by saying, “if we discuss this matter again during this parliamentary session, I hope that, by then, every health board will have committed itself to provide adequate funding and support for the care team co-ordinators and to extend proper support for MND sufferers”. Mary Scanlon MSPsupported Dr Richard Simpson’s point of view, she said, “As Dr Simpson said, MND sufferers are a small patient group. That means that they could easily be forgotten, so it is good that we are debating the issue. Anything that members can do to increase awareness will, I hope, lead to greater understanding of the disease and greater support for sufferers”. Karen Gillon said, “It is sometimes difficult fully to grasp how big an impact the illness has on people until one meets individuals. The debate is not about an abstract concept or a disease that we read about in a newspaper—it is about real people with real lives. As parliamentarians, we have a duty to do what we can to provide them with the support and assistance that they need at what is a difficult time in their lives”.
Minister for Public Health, Shona Robison MSP acknowledged the devastating effects of MND and commitment the Scottish Executive to help address care issues, she said, “taking account of Margaret Mitchell's general comments about boards, I intend to write to all boards to draw their attention to the terms of this debate and to encourage their active collaboration with the Association. We must be sure that people with motor neurone disease get the best possible care, wherever they live. She concluded with, “People with conditions such as motor neurone disease deserve the best quality of life possible. I hope that I have given members assurance that we intend to build on the good work that has been done already and ensure that we develop equity of access throughout Scotland.
Following the debate, MSP’s met with those from the MND community who had attended the debate and Shona Robison MSP spent time talking to a number of people with MND. The visitors to parliament appreciated her interest and hopefully she will have learnt a little more about the effects of MND and the commitment of the community who wish to motivate decision makers.
Craig Stockton, Chief Executive Officer of the Scottish Motor Neurone Disease Association said in response to the days events, “We are pleased with the cross party support that the motion received and with the quality of speeches made during the debate. Our aim was to raise the awareness of the MSP’s and Scottish Parliament to Motor Neurone Disease and to seek support for improving services to those affected by the condition. To this end, the Minister’s call for the Health Boards to work with us and her committed to write to them encouraging their active collaboration with the Association is to be welcomed. We see this as a positive step forward by the Scottish Parliament”.
The Association thanks Margaret Mitchell MSP and all supporters in the chamber who stood and delivered speeches backing her motion.