When we were thinking about relaunching this part of the website, Action for MS seemed a snappier title than ‘securing the future of effective MS health services’.
That’s what we do – or try to do – and most of this work goes on behind the scenes. Sometimes, we can publicise a success story where we have guaranteed a change in the health service for the better for people with MS. Quite often, what we do is chipping away so that over the long-term, services will improve.
What we’d like to do in this blog is open a window onto what we’re working on at the moment, and where and how you can get involved if you want to. Limited resource (ie people) and limited time means there are some changes in government policy and services that we can’t always comment on or respond to. This can be especially true in Scotland, Wales and Northern Ireland, all of which have completely separate health systems.
At a national level our main lever for improving services is by responding to government consultations. One of the roles of this blog is to highlight what consultations are happening where, so that you can respond individually to the consultation if you want to. We’ll also use the blog to highlight our appeals, and other items of interest.
As we’ve revamped this part of the website, please read about our work. For those of you interested in new treatments, look at what’s happening in DMTs and Symptomatic treatments and therapies. Also, a new Action for us is our position on ‘ensuring real choice for MS in the health service’. It encapsulates everything the MS Trust works towards in securing the future of effective MS services.
So, for MS Awareness Week 2012 – what’s happening in May 2012?
Well, there are our own long-standing appeals to support MS specialist nurses and for the MS Trust enquiry service.
In consultations, in Scotland, there’s a consultation open on the Charter of Patient Rights and Responsibilities, until 25 June 2012, which looks at the basic service the NHS in Scotland should provide. Wales is running a consultation on the Social Services (Wales) Bill 2011 until 1 June 2012. Northern Ireland is remarkably quiet, being busy trying to implement Transforming your care. England is in turmoil thanks to the new Health and Social Care Act 2012, but isn’t consulting on health issues at the moment. But the Department for Work and Pensions is consulting on the new Personal Independence Payment (PiP), in a number of separate and fairly confusing ways. Read our response and have your own say here. As a rule, we don’t have the capacity to work for change in social care and benefits. But the change from Disability Living Allowance (DLA) to PiP is so significant for so many people with MS that we felt we had to take part and make our voice heard.
We’re working with NICE to ensure that people with MS get treatments and services that otherwise are more of a lottery. Read our submissions on Fingolimod and the new guideline on Incontinence in Neurological Services.
Let me know what you think of this relaunched section. Don’t respond to consultations here though. Remember Government works for you – so talk to it!
Alice Hamilton
Policy Support Officer
Blogs are a great way to help raise funds and awareness for charities. I have just started a new blog about my fundraising activities where this year I will be walking 870 miles on the newly opened Welsh Coastal Walk to raise funds for the MS Trust. It would be really great if you could follow my progress, and help me to spread the message though your social media as well!
Many thanks
Steve