Tag Archives: MS Society

The MS Lottery Of Treatment And Care

Lottery of treatment and careOn 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.

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The Teenager Speaks…

I’ve got a pretty special guest blogger today – my son, The Teenager, asked to get involved and this is what he wanted to write, no editing:

When I first found out my mum had MS, I didn’t know what it was so I thought it could’ve been anything so I was very worried.

It was the day that I was coming back from London after seeing my dad and instead of my mum picking me up my mums friends did and I didn’t have a clue where my mum was. I was told she was ill but I didn’t realise that she was in hospital.

I was dropped off at my Nana’s and she explained what was happening. I went home after my mum came back and because of the MS she couldn’t speak properly and we had a good laugh about it, taking the mick. It was still worrying me though because I didn’t really know what was totally going on.

But as time went on things got better I realised that there were worse things in life than MS and that my mum didn’t have as bad a MS as lots of people do. Me and my mum have met lots of lovely people through my mum having MS which is a good thing. In October 2011 when I was 12, we went to a MS march in the city centre which was a lot of fun and there were lots of nice people there.

I have learnt a lot of stuff through my mum having MS. Of course I still worry a tiny bit but nowhere near as much as I did. My mum’s best friend, the builder, has helped a lot and it is nice to have him as company.  After a year of my mum having MS a lot of good things have happened. My mum has been very lucky to have Campath (Alemtuzumab) treatment in the local hospital. It did sound scary at first but it helps my mum a lot.

I am hoping that in the next few years me and my mum will meet a lot more people with MS and go to lots of different MS based things. In the town centre the shopping centre has been sponsoring the MS society and they are selling ‘MS wrist bands’. A lot of my friends are now wearing these and it is nice to see support shown for this and hopefully more people will start to wear them.

Overall even though my mum has MS she is still the coolest Mum ever and nothing will ever change that.

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DLA – A Bit of Breathing Space

Good(ish) news – the process of forcing all those claiming Disability Living Allowance DLA) to undertake new assessments in order to be eligible for the new benefit, Personal Independence Payments (PIP) has been slowed down. Esther McVey, a works and pensions minister has confirmed that all those with an indefinite award will not be reassessed until October 2015 at the earliest, after the next general election (read more about this here).

Most MSers claiming DLA have indefinite awards. Unless the Department for Work and Pensions knows something we don’t, MS lasts for life. So why reassess people with MS at all? It is a degenerative neurological illness and it is not, as yet, reversible. There are thousands of people who fear that losing this benefit will have a devastating impact on their lives. Having the higher rate of mobility allowance also automatically makes you eligible for the Motability scheme and a blue badge, so if people were to lose their benefit, or have them downgraded, they would also lose these components.

Is this what the government wants? To shove disabled people back into their homes, without means to live independently, travel independently and take part in society? A lot of us MSers work, study and contribute, despite the problems MS brings and we are proud to do so.  I have friends who tell me that their DLA means the difference between just about surviving and sinking way below the poverty line.

Having a disability like MS brings extra, often unforeseen costs, so the revised timetable is good news. The MS Society and many other pressure groups are urging the government to look again at the need to reassess MSers. 63,000 people with MS, an irreversible condition, claim DLA. But then so do  21,000 people with drug and alcohol problems. Go figure…

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