The MS Trust is committed to involving people with MS in our work. So we're delighted to introduce the three lay members who will sit on the advisory group of our new project MS Forward View, looking at how MS services can provide greater, more equitable access to care.
In autumn 2015 the MS Trust launched MS Forward View. This is our innovative one-year project, looking at how MS services can provide greater access to care, making best use of current resources and skills, and how best to measure the quality and equity of access to services for everyone with a diagnosis of MS. This project builds on the work of our influential GEMSS (Generating Evidence in MS Service) programme.
We are committed to involving people living with MS in our influencing work, and believe that people with MS should be effectively involved in the development, delivery and evaluation of services that affect their lives. Ensuring that the direct views of people with MS are built in to MS Forward View is therefore a critical part of the project.
In December 2015, we openly recruited three people with MS to guide the work for MS Forward View.
We are delighted to welcome Amy Mackelden, Pia Reynolds and Caroline Smith to the project.
I was diagnosed with relapsing remitting MS in March 2014, and am currently on Tysabri. I’m a writer and blogger, and have written for publications including New Statesman, The Independent online, Bustle, and Hello Giggles. Some of my articles have topics such as how I took my PIP benefit application to appeal, the discrimination disabled people face, and how MS can change everything, from work to friendships to sex. I'm keen to write about MS in as many forums as possible, and to use my social media presence to discuss MS issues. I’m also currently developing a spoken word production called ‘MS is my Boyfriend’.
In 2015 I took part in the MS Society campaign MS: Enough, and gave a speech at a small reception at the Houses of Parliament about my experience trying to claim the PIP benefit. I’m particularly interested in engaging with wider networks of people with MS in order to bring their views and experiences to this vital discussion of MS services in the UK, so I’m really excited to be a member of the MS Forward View Steering Group.
I’m originally Danish, but have lived in the UK now for coming up to 25 years. I was diagnosed with relapsing remitting MS in 2011 after a bout of optic neuritis and a smaller sensory relapse a few months later. I’ve been a housewife since our son was born 14 years ago. My MS diagnosis put my plans to get back to work on hold, but I do some occasional graphic design, volunteer at a local animal shelter, and in 2007 I helped to set up the Southern Finnish Lapphund Society. I have served as a member of the committee since.
Being part of MS Forward View is a fantastic opportunity for people like me to make a difference, and I can’t wait to get stuck in to this fantastic project! I am hopeful that MS Forward View will come up with some exciting ways to improve service provision for all people with MS.
I was diagnosed with relapsing remitting MS in 2008 with symptoms from 2006, and developed secondary progressive MS in 2012. I worked as a dietitian in the NHS for 23 years but retired on ill-health grounds in 2013 as work had just become too much. My partner and I adopted two elderly dogs from Battersea earlier this year which is keeping us busy! I also sit on the East of England Citizens senate and am a lay member of the Bedfordshire neurological network.
I’m really excited about the possibilities of MS Forward View, particularly the chance for MS services to be mapped in order to promote equal access regardless of where you live. But most importantly to me as someone with progressive MS, I’m thrilled to be part of a project that recognises the need for people with progressive MS to have the same access to services as available to those with relapsing remitting MS.
More opportunities to get involved
To help support the lay members and ensure that MS Forward View reflects a broad range of experiences, we will be setting up a wider discussion forum of people affected by MS (including carers) in February 2016. Further details will be posted on our Involvement Opportunities page. Alternatively, email firstname.lastname@example.org for more information.