Member of the Welsh Parliament for Monmouth, Nick Ramsay, held a short debate in the Senedd yesterday on Motor Neurone Disease (MND) following on from a previous short debate he led in 2014 on the plight of people living with MND. Then Nick called on the Welsh Government to recognise some of the challenges that people in Wales were facing and look at ways it could better support the MND community. While some progress has been made Nick feels there’s still much more that can and should be done. Yesterday’s debate specifically addressed the need to support people living with MND by adapting the current process and making it easier for them and their families to adapt their homes in response to living with the condition.
Speaking during the debate Nick said: “Undoubtedly, MND is a cruel disease. It's one that robs people of their dignity and, unfortunately, carries quite literally a death sentence. And so if one message is taken from this debate, it's that time is critical for people living with MND. It's believed that MND kills a third of people within a year and more than half within two years, and so time is so important in ensuring that they can live in a safe and suitable home. Housing adaptations and the process by which they are made to a property need to be quicker, more joined up and ultimately need to recognise the importance of swift action to ensure that people living with MND can live as comfortably as possible.
“Now, to the Welsh Government's credit, some very important work has been done to review and implement changes to the adaptations process, and I fully appreciate, and the MND Association fully appreciate, that this is a process that will take time.. However, the current COVID-19 pandemic has meant that the work has been paused. In the meantime, people in Wales living with motor neurone disease and other neurological conditions continue to struggle to get home adaptations done quickly, and, as a result, some are living in homes that are neither safe nor suitable for them. And this is having a very direct impact on health and well-being, which may lead to isolation, lack of physical activity, disengagement from family and community, and unsafe environments contributing to accidents and falls.”
After urging the Welsh Government to return to its work on these issues now that the vaccination programme makes strides across Wales, Nick called on all members of the Senedd to support MND Association’s “Adapt Now Welsh Homes for MND” campaign. The campaign calls for a clear commitment from the Welsh Government to increase funding for local authorities, so that more people with accessibility needs are supported to live as safely and independently as possible. At a local level, councils must put in place a fast-track non-means-tested process to help to ensure low-cost, high-impact adaptations are delivered in a timely way for people living with MND.
In conclusion Nick said:” I'm asking for the Welsh Government to develop appropriate outcome measures on good practice, to time the installations of adaptations, and to monitor and report outcomes against this delivery tool. That's a very complex way of saying that we're asking for the Welsh Government to review this, so that adaptations are more accessible, more timely and that people living with end-of-life care, and towards the end of life, get the support they need to live life more comfortably. If the service standards are to have any meaning then we need to be able to judge progress in securing what people need. People living with MND and their carers have enough to worry about without having to navigate complex systems to secure these adaptations, so we have a duty to deliver housing solutions quickly for those most in need.
In closing, I hope the Minister will accept the sincerity of today's debate and take back the message that time is critical and that action is desperately needed to support people living with MND in Wales. Let's do what we can to make sure that people living with this condition, and indeed other neurological, live the final months and weeks of their lives as comfortably and as safely as possible.”