We were thrilled to recently announce the appointment of our first ever Advanced MS Champion, Lindsay Lord, based at Salford Royal NHS Foundation Trust and covering Greater Manchester. Here, we talk to Lindsay about the vital importance of this new role and her determination to make a difference for people with advanced MS.
Hi Lindsay, so how have you found the first few months in post?
Exciting yet challenging. As this is a new post and being the first person in the role I don’t have the benefit of hindsight. The biggest challenge has been where to begin, as the Greater Manchester neurology team cover such a huge geographical area, all with varying levels of services available to people.
How long have you worked with people with MS and what was it that made you want to take on this new role?
I have been an MS nurse for nine years and have learnt so much during that time. But because of increasing time constraints due to changes in the service, MS nurses in recent years have all seen a change in our job, taking us away from providing care and developing services and education for people who have complex symptoms and who struggle to get to clinics. This role will help me to deliver the care and support people with advanced MS so desperately need.
What do you love most about your new role?
Seeing the benefit that people get from my input, which hopefully enables them to have a better quality of life and to feel empowered to manage their own health. I would like to thank the people with MS who I work with who have been full of encouragement and support and to say that I will do my very best for you all.
What are the biggest challenges people with advanced MS face?
I see people who are unaware of the services available to them and receiving a reactive approach to their health rather than proactive.
How will this role make a difference?
It is still early days, but from the individuals and their families’ point of view, they can see that they matter, that even small changes can make a difference, that we have not given up on them and they should not give up on themselves.
How important is it to bring more support to people with advanced MS across the country?
There is a lack of consistency in the level of service, which is unfair. In the current climate we need to think outside the box to support people through other means whilst we continue to demonstrate the benefits of improving the social/NHS services that we have. We have an aging population with increasingly complex needs and to maintain good health through improved services benefits the individual and society.
How has the MS Trust supported you in the role?
I am truly grateful to the MS Trust for identifying the need for this role and supporting it. The team are my constant support and help me drive the project forward.
About the Advanced MS Champion Programme
‘Advanced MS’ describes the scale of impact that MS is having on an individual, rather than the type of MS they have. It is often characterised by complex, debilitating and ongoing symptoms, and can have a devastating impact.
The MS Trust estimates up to 40,000 people in the UK have advanced MS. Our research shows that, too often, they are missing out on vital support from health and social care, instead having to rely on care from family and friends, and sometimes managing this debilitating disease alone. Through our Advanced MS Champion Programme we are determined to change that. Thanks to funding from The October Club, last year we pledged to fund six Advanced MS Champions at sites across the UK for the next three years. Lindsay is our first Champion and we will be announcing the next site very soon.
Our Advanced MS Champions will help the people who need it most, transforming the lives of people living with this debilitating condition, as well as supporting the wellbeing of informal carers.
