On Tuesday I went to the Welsh Assembly in Cardiff Bay to attend the launch of the MS Society’s new report, ‘A lottery of treatment and care’.
After going through security (where I had to remove my belt, very embarrassing for muffin-toppers like me) and picking up my ID badge, it was time to catch up with friends over lunch.
The buffet was excellent, but I was very well-behaved and didn’t sneak a little bag in to take some home, even though I was tempted to swipe a couple of the gorgeous cakes.
The launch went perfectly, my only gripe being that there weren’t enough chairs set out and after standing/leaning for a while, I had to move to a sofa at the back of the room, but I still managed to see and hear everything.
The report is hard-hitting and in places, shocking. I had no idea there were only FOUR neurologists who specialise in MS in the whole of Wales, and they are all based along the M4 corridor in the south. Perhaps this plays a part in the fact that six out of ten eligible people do not take disease modifying treatments. In Europe, only Poland and Romania have a smaller proportion of people with MS taking such treatments.
Of particular interest to me, only a quarter of people with MS who are of working age are employed, compared to three quarters of the wider UK population. My being sacked for having MS highlights the fact that discrimination in the workplace is very real and is still happening, despite a raft of measures put in place to prevent this.
The MS Society is calling on all four governments in the UK to ensure that every person with MS has a personalised treatment, care and support plan, with two comprehensive reviews.
We should all read this report and we should all be angry. Yes, there have been some fantastic developments over the last few decades, but if access to services and drug treatments are limited and unfairly distributed, we need to let the decision makers know.
All of us can do something, even if it’s just signing a petition. We need to keep MS firmly in the spotlight.
It is a very sobering report. Hopefully the AMs that spoke will keep their commitments.
The welsh cakes were lush too.
Weren’t they lovely! Why don’t mine turn out like that, lol.
X
Thanks for posting about this. 10 weeks ago a stroke consultant informed me that I had been misdiagnosed with 2 strokes over 9 months and that I actually had ms. He said it wasn’t his field and couldn’t tell me anything about ms but I would be referred to a neurologist, and was promptly sent home after being told not to look it up on the internet!
That information has been ringing in my ears ever since and I get to see the neurologist for the first time tomorrow! The longest 10 weeks of my life.
When I see her tomorrow I will be sure to ask if I will receive 6 monthly reviews and what the treatment options are, and hopefully I will get to speak to an ms nurse as I understand not everyone has the opportunity.
As for not looking it up on the internet, I had to, it’s a big diagnosis to put out of your mind for a couple of months when parts of you are not functioning. I feel better for having doing a bit of research, knowledge is power as they say.
Julie
Hi Julie,
So sorry to hear you’ve been through the diagnostic process and good luck with your neurology appointment. Maybe take someone with you so you can remember all the details for after?
Funnily enough, I was told the same thing about not looking it up on the internet, lol. But of course I did! Like you say, it’s a huge, life-changing thing to go through and we want to be fully armed with as much information as we can.
As long as we stick to the trusted site – there’s a lot of doom-and-gloom info out there and everyone’s MS is different!
X
Hi,
What the report ignores is that there are many people with MS who are only affected in a very mild way. I met someone like that yesterday. His right forearm feels a bit tingly otherwise he is 100% OK Does he need treatment – NO. Does he want treatment – NO. I’m sure there are lots of other people like him.
Meanwhile I do agree that the lack of MS consultants in Wales apart from along the M4 corridor is not good & I bet there are lots of MS sufferers don’t have access to treatment even if they need it
Hi Patrick,
That’s a very good point. Of course there are people who have very little need of services for MS.
I think the report was addressing more the people who do. The statistics for DMTs were for people who are eligible for them, not everyone who has MS? Not all of us fit the criteria.
An interesting report, uncovering a good deal of information for everyone involved in MS, health care and social care to digest.
X
The statistics are sobering. Goodness, thanks for sharing. I didn’t realize how lucky I am to be living so close to Washington, D.C. No shortage of neurologists here. I hope things change in the UK…
Hi Cranky!
yup, I used to wonder why so many people said to after my diagnosis, ‘bet you’re glad you live in Cardiff?’. I just thought, yes, it’s a lovely city, little realising what they actually meant! Bit slow on the uptake, me.
X