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Integrated care – Have your say

15th May 2012 by david.rowland

‘Integrated care’ is the new buzzword across the UK.  Opinions about what it means vary.  A very simplistic version is that health and social care work together so that the person with MS gets all the care they need in the right place at the right time.  It’s very difficult to do successfully.

England and Scotland’s health departments are both talking to people about integrated care. They are doing this in very different ways. The MS Trust will be responding to both, and we will publish what we say in due course.

In England, the Department of Health is discussing the possible contents of its planned Long-term Conditions strategy. The strategy is cross-departmental, which means it won’t just include the Department of Health, but also departments responsible for local government, education, benefits, transport and others. You can see the whole list on the DH’s microsite.

According to the publicity:  “This vision will cover helping to prevent or delay the onset of conditions, preventing deterioration of conditions and helping to develop joined up services to support people living with long term conditions. The strategy won’t cover specific detail of how services are delivered.”

They’ve listed a number of draft shared goals, which they want you to comment on:

  • People will be supported to stay healthy and avoid developing a long term condition, where possible.
  • People will have their conditions diagnosed early and quickly.
  • Services will be joined up, and based around individuals’ biological, psychological and social needs.
  • People with long term conditions will be socially included, including succeeding in work and education.
  • People with long term conditions will be as independent as possible and in control of their lives (up to and including the end of life).
  • People with long term conditions will be supported to stay as well as possible.

There’s no formal list of questions, just an online box you can reply on the Long-term Conditions strategy have your say page.
Or you can write a formal response and post it to: Long term conditions team, Room 2N16, Quarry House, Quarry Hill, Leeds LS2 7UE.

The closing date for responding is 15 June 2012. The proposals cover people living in England only.

In Scotland, proposals for the new Health and Social Care Partnerships have come out, the proposed new structure to replace Community Health Partnerships (CHPs). Scotland has one of the fastest-growing populations of elderly people (over 65s, in health speak),  and the proposed new Health and Social Care Partnerships should join up health and social care provision in the community. Originally, this was aimed only at better care for the elderly.  For people with MS, the vitally important point is here:

“Proposals include changes to how adult health and social care services are planned and delivered, aiming towards a seamless experience from the perspective of the patient, service user or carer. It also outlines improvements to integrating health and social care services which are not limited to older people, but extend to all adult health and social care services.”

Again, you can have your say. This is a formal consultation, which means answering very specific questions that they ask on their form.  Please respond.  The consultation closes on 31 July 2012. The proposals cover people living in Scotland only.

Alice Hamilton
15 May 2012

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Government policy in MS: first blog post

4th May 2012 by david.rowland

MS Awareness Week is a great time to be relaunching our webpages on government policy. Government policy shapes how the money moves round the NHS, what managerial priorities are (or aren’t) and therefore what services people with MS can expect to receive. Part of my job is to identify current buzz words for health professionals so they can provide and protect services for people with MS.

The four devolved administrations of the UK – England, Scotland, Wales and Northern Ireland – each run their NHS their own way.  Strategies are different, structure is different, services are different, and the way that money moves round the system is different in each nation.

This blog is meant to keep you up-to-date on a regular basis with new developments. This first entry is a bit of look back to what I think matters at the moment. Please bear in mind that I can’t cover everything that’s historically important. But I will highlight new policies and reports that have a bearing on the NHS now.

So, in England, the Health and Social Care Act 2012 is revolutionising the structure of the NHS in England. Whether that’s for better or for worse depends on your point of view. In April 2012, though, the policy news has been  that the Department of Health is piloting a new funding model for people with long-term conditions (the year of care approach) and David Cameron’s pet project on getting nurses to care, the Nursing and Care Quality Forum has set out the terms of reference of their work Potentially most important is the Public Accounts Committee’s (also see MS Trust news story) report into neurological services, which has required the Department of Health to revise its current plans so that specific targets and outcomes for neurology are included in strategies, with a report back in 2014. This one will bear watching, as in the era of the Nicholson challenge of reducing spending by 4% year on year, being accused of wasting public funds (as the DH was) is at best, embarrassing.

In Scotland, the biggest news is that there will be a shake-up of Community Health Partnerships; they will integrate with social care and become Health and Social Care Partnerships. Although this was announced in December and all has since gone silent. There’s also the Self-Directed Support Care Bill going through Parliament just now, which enshrines the legal right to choice between being offered services, taking direct payments, or choosing care via a mixture of these options.  On 1 April (unfortunate choice of date), the Scottish Government launched the Patient Advice and Support Service, which offers awareness of patient rights and support to people on how to give feedback on their experience of healthcare. The cynical might call this a desire to avoid complaints, but it’s potentially very useful, particularly to people who get shuffled between services.

Wales issued its major strategy document for the next five years, Together for Health in February 2012. A remarkably wishy-washy document, it summarises a vision of providing people-centred care closer to home under a tougher financial regimen while not giving any detail about how this Vision might be realised.  On a more positive note, new guidance has been issued to Local Health Boards to increase access to talking therapies across Wales:  It also provides a set of quality standards for psychological interventions in Wales.

Last, but in some ways busiest, to Northern Ireland. Transforming your care is set to revolutionise the structure of the NHS in Northern Ireland, and a great deal of effort and energy is going into selling it to the local population.  Related to this document, a fair swathe of other policies have emerged, notably the Physical and Sensory Disability Strategy and Action Plan.  A bit of a mouthful for a straightforward list of actions that local providers need to put in place to improve services for people who are disabled, including some people with MS.  Disability is clearly a buzz word in NI at the moment, as the new Draft Disability Strategy launched 25 April, which looks at equality of opportunity for people with disabilities and social inclusion. It’s open for consultation until 15 August.

The other big story is that politicians and civil servants in all four nations are tacking social services, as well, with lots of documents about new social work strategies. The MS Trust will keep following these significant developments and I  will be highlighting as much as I can in this blog.
We are always keen to hear what you think, so let us know in the comments box below! And don’t forget to follow us on facebook and twitter.

Alice Hamilton
30 April 2012

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Action for MS opening blog

4th May 2012 by david.rowland

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

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Recording our Radio 4 Appeal

4th May 2012 by laura.percival

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It’s not very often that the MS Trust has the chance to broadcast to the nation, so being selected for a Radio 4 appeal means a great deal to us. The MS Trust has had three appeals on Radio 4 in the past, the most recent of which raised over £12,000, so we are very grateful to have the chance to appeal to Radio 4 listeners again at a time when funding is particularly hard to come by.

We were delighted that one of our founders, Chris Jones, was prepared to make the appeal on our behalf. We wanted our presenter to truly understand the impact that good information and support can have when living with MS. After having spent the last few weeks working with Chris to get the script just right – not easy when you have a lot to say in 2 minutes 50 seconds – we agreed on our final version and recorded the appeal on Wednesday 2nd May at the BBC studios.

Chris and her friend Jill Holt co-founded the MS Trust in 1993 because they wanted people with MS to have access to better information and support. In our appeal, Chris talks about her own experience of being diagnosed with MS over 30 years ago.

As Chris says, she found the thought of telling her story on the radio a little daunting… “When Laura asked me if I’d do the Radio 4 Appeal on behalf of the MS Trust I must admit I had that familiar sick feeling at the pit of my stomach. However… what can you say? It’s a great opportunity not only (we hope) to raise much-needed funds, but it’s also a chance to reach people with MS who maybe don’t know about the MS Trust.

“I went to the BBC with Sir John Harvey-Jones, our president, when he made a similar appeal for us over 10 years ago. He had just had his first stroke and was having real problems saying his “S”s. So what was he asking for? “Support for multiple sclerosis specialist nurses” – hard to find something with more “S”s than that! But he was so patient, recording over and over again till he got it right. And when he spoke about “his beloved daughter” who had MS, I remember having to swallow very hard so as not to start weeping.

Radio 4 Appeal logo

“One lovely thing about me having to do the appeal this time around was that it was the same man recording the appeal at the BBC as 10 years ago – he remembered Sir John Harvey-Jones’ appeal and admitted to having the same lump in his throat at the time!”

All of us at the MS Trust would like to say a big thank you to Chris for working with us on this appeal and for talking so personally about her own experience. We hope that Chris’s story will resonate with the Radio 4 listeners and bring in lots of donations to help fund our Information Service.

You can hear Chris’s appeal on BBC Radio 4 (92 – 95 FM) on Sunday 20th May at 07:55 and 21:26 or the following Thursday at 15:27. We will also be posting links on our website after the broadcast where you can listen to the appeal online.

Laura Percival, Fundraising Officer

Hear Chris talking about the Radio 4 Appeal (click play below)…

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Chris & Laura in the recording studio

View more photos on Flickr

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26.2 miles an easy challenge

19th April 2012 by helena.jidborg

Here is a guest blog from one of our supporters, Ray, who is running the London Marathon this Sunday!

 

Upon reading that title, you are probably thinking one of two things. Either ‘How can somebody say that? a marathon is a huge challenge’ or ‘That is a bit of a cocky attitude’

Well, it is neither of them, let me introduce myself and explain exactly what I mean.

My name is Ray Sievey aka the JoggingHippo and on 22nd April I will be running the London Marathon raising money for the MS Trust. In 2010 I raised money for the Trust by cycling from Land’s End to John O’Groats; 1100 miles in 16 days ‘Ah that is what he means by 26.2 miles being an easy challenge’ Wrong again!

I went to watch a friend run the London Marathon last year and just got caught up in the atmosphere and vowed there and then that I needed to ran the marathon again. Yes I did run the London in 1997, when I was just a young pup. But that is when I did have a cocky attitude. In hindsight I probably didn’t train as well as I could and took just under 4 and half hours.

This year I have given up booze, my last beer was at 16:30 on New Year’s Eve, not that I am counting or anything and I have been very lucky by winning a competition called Project 26.2 run by Men’s Running Magazine. This has meant that I have had support from a professional coach, a physio, running gear and energy nutrition all supplied. Therefore, I am taking full advantage of this opportunity and will be aiming for a sub-4 marathon. As part of my training I have run 5 half marathons this year plus a 16 mile & 20 mile race.

This is me during the Barcelona Half Marathon

“Stop rambling Ray, you still haven’t explained the title of your blog”, I hear you cry.

Well the reason I am running the marathon and raising funds for the MS Trust is because my old man and my younger sister both suffer from Multiple Sclerosis, despite there being no proof that the disease is hereditary. My dad has progressive MS, which means his body is constantly under attack. My sister has remitting/relapsing so the disease attacks her sporadically.

If you are reading this on the MS Trust website, there is a good chance you know about the disease, but if you don’t here is my take on it: Think of your spinal cord as a TV cable, copper on the inside protected by a plastic sheath. The MS disease attacks the sheath so the copper becomes exposed which affects the signal being sent through the cable. To compound the misery, as the body tries to repair itself the scar tissue that forms in turn also damages the copper wire as well. So basically your brain is sending messages, but they just don’t get through. Or from a TV perspective a rubbish picture!

My Dad used to be a Marathon runner himself, completing the London Marathon twice, the New York Marathon, plus numerous half marathons. Today despite only being in his early 60’s he is now virtually wheelchair bound. To walk 5 metres, takes him 10 minutes, having to use crutches and walk backwards as he physically cannot lift his feet, a kind of a slow motion Michael Jackson moonwalk but without the crutch grabbing

At home a through floor lift has been installed, so he can get up and down stairs in the wheelchair. All we need is some dry ice and we can reproduce ‘Stars in Your Eyes’. Incidentally, my little boy thinks this is very cool as Granddad comes through the ceiling of the dining room. My sister has to walk with a stick and will admit that she has become a lot more forgetful. But the disease doesn’t only affect my dad & sister. My mum is in affect a full time carer. So as you can see the disease has had a profound effect on the whole family.

So as I see the daily challenges that my family have to face dealing with MS, is running 26.2 miles really that tough a challenge? I don’t think so!

Incidentally if you want to read more about Project 26.2 and all the training I have done, you can via http://www.mensrunninguk.co.uk/raysievey.obyx As I write this, I am just shy of raising £4000.

Thanks for taking the time to read this blog. If you happen to be at the London marathon on Sunday, if you see the vest below it will be me wearing it, give me a shout!

Cheers
The Hippo

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MS Life

17th April 2012 by helena.jidborg

During the weekend I and a few of my colleagues found ourselves northbound for Manchester for the MS Life Exhibition. This is an event that has been going for a few years, and the MS Trust has been attending but it was the first time I went along to it personally.

The exhibition was set in Manchester Central, a former train station, that is huge and filled with all sorts of stands and info points related to MS. The MS Trust stand was set up in the support group part of the exhibition hall. From the time the doors first opened for the public on Saturday and till it closed on Sunday our stand was very busy. People with MS and their friends and family were flocking to the stand looking for information. Some people who visited the MS Trust stand knew what they were looking for and others were just browsing.

Some of our most popular publications on the day were Sex and MS: a guide for men & Sexuality and MS: a guide for women, Tips for living with MS, At work with MS, Kids guide to MS and young person’s guide to MS. Oh and the work out DVD – move it for MS was also flying of the shelf! A lot of people that already had the Move it for MS DVD also came up and told us how much they liked it and that they tried to do a bit from it every day!

It was great meeting all the people coming to our stand, some of them being people I have spoken to on Facebook and Twitter in the past, and it was really nice to put a face to a name/social media account.

I was overwhelmed with what an over all positive event MS Life was and I think from what I heard, a lot of people that were there felt happy with the day too. I felt very proud of being at the event representing the MS Trust and being part of what we do.

As a member of the web team I have a lot of contact with people but not face to face (more screen to screen really!) so it was great to come along and meet so many of you people out there. I hope we introduced some new people to the MS Trust and our publications and our enquiry service. And on a personal note I hope that we will get some more submissions for “…I also have MS” and “My MS Tips” something I could not stop myself from trying to promote just a bit!

Where you at MS Life? Did you come by and see us? Why not drop us a comment in below!

 

Helena – MS Trust

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Kenny in Sahara

27th March 2012 by helena.jidborg

We get the most fantastic stories from people who have been doing our overseas treks, so we asked one of them, Kenny, to tell us all about what it was like going to Sahara;

April 2011 I booked up for the Trek, fancied a bigger challenge and I do have a bit of a ‘to-do’ list.

10th March 2012, 28 strangers meeting up at Heathrow, but little did I know that 9 days later I would have met some fantastic people and came home having made some very good friends!

Before the off I tried to picture the scene and could only come up with, sun, sand and heat! Little did I know that the Sahara would give me so much! The dunes are the prettiest land scapes I have ever seen, always changing and very demanding, then your sat in the middle of the Desert in the incredible silence to be graced by the most beautiful sun sets. Your tent is up, you’ve had a ‘wet-wipe’ wash, the sun set 15 mins ago and its time for dinner, its dark and freezing cold, then you look up to the sky and gasp at the blanket of stars winking down at you.

You’re tucked up nicley in your sleeping bag and 5 in the morning soon comes along, its still very dark,you get dressed, put on your head torch and climb the tallest and biggest sand dune to sit and wait for what will be the most amazing sun rise you can ever witness! Each day you share with fellow trekkers all with their own stories to tell, here you realise we are all here in the name of charity and for the ones we love. We all gave each other the encouragement to carry on and were all great full for the odd hug here and there. From sand to rock, from camels to lizards the sahara had so much to see and really was fantastic.

I’m so proud of what I do for the MS Trust and have never been in for my self, but the Sahara is the best award I have ever received, my new friends, my memories and the stories I will forever tell and never get bored of.

Kenny Smith

If you feel inspired and want to sign up for an overseas event; why not have a look at our overseas event pages

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In development, licensed and approved; the confusing world of MS Drugs

13th February 2012 by helena.jidborg

In my day to day work I spend a lot of time of Facebook and Twitter, I post news articles and pick up on questions people might have for the MS Trust. I notice a lot of people (including myself) get very confused about drugs that are in development for MS. You see a news item about something like Sativex getting a licence, which will excite a lot of people thinking this entitles them to be able to have the treatment, but when they try to get it, they get turned down as the drug is not yet approved by the NHS. Same thing with Fingolimod, people get excited about there being a new oral drug on the market, but no you can’t actually have it as NICE haven’t yet decided if it is worth the money yet.

So we at the MS Trust wanted to try and simplify things for people finding out about drugs and where in the development they are, because there are many phases that a drug passes through before being an approved drug to use. Here on our research pages you can see some simple graphics explaining how far the drug has gone down the development route.

This also actually shows that there is a lot of research being done into new drugs, and that all new potential drugs aren’t just for relapsing remitting MS either. There is research being done into drugs both for secondary and progressive MS.

Hopefully this will make things a little easier to understand, I know I understood a lot more after reading the article that is in February’s edition of Open Door “From Test Tube to medicine Cabinet”. Why don’t you have a look for yourself and see if it makes more sense?

Our New Drugs in Development Pages

 

Helena- Web Editor
MS Trust

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Peer review – what’s it all about?

9th February 2012 by david.rowland

“The finding is not novel and the solution induces despair”.  Referees’ quotes – 2010. Environmental Microbiology 2010;12:3303–3304.

Today Dr Gavin Giovanoni’s blog suggests we become activists and demand peer reviewed evidence  http://tinyurl.com/74q6wwy

The MS Trust Info Team are ready to take up our placards and head to the streets – but why should we – and what does it mean?

Peer review is a system for assessing the quality and importance of research before an article is published in a journal. When researchers have completed a study they usually write a paper for publication in a scientific journal to share their findings with the community and add to the understanding of the subject area. The journal editor will send the article to others who research and publish in the field and ask them to say if the results are credible, the design of the study and its methodology are appropriate and to determine if the findings are important and the work is original.

There are some criticisms of this system which include the time taken to review and then publish the articles and a possible bias against highly innovative work.  However, peer review uses the independence and expertise of the reviewers to obtain an unbiased evaluation of the research.

Evidence based information is at the heart of the MS Trust’s work and has been since our foundation in 1993. The research featured in Open Door and Research Update is selected from peer reviewed medical journals. As an organisation we are certified to carry The Information Standard quality mark which requires us to demonstrate how we select and use the evidence from this research to produce our information.

Find out more about peer review and scientific publishing from the Sense about Science publication “I don’t know what to believe….”

Lost in information – Open Door article

See the latest Research Update

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Welfare reform bill

16th January 2012 by anita.diamond

Apparently, today is the most depressing day of the year According to the University of Exeter, it is the combination of unpaid credit card bills, post Christmas blues and the long dark nights.

However, for many people with MS and other disabilities, there is also the ‘Welfare Reform Bill’ looming – jeapordising hard fought for benefits. Disability Living Allowance is the latest benefit to be discussed in the House of Lords today. The proposed changes include the introduction of Personal Independence Payments instead of DLA. (See here for more info http://www.disabilityalliance.org/f60.htm). You might think the changes sound reasonable or that the real intention behind these changes is to save money and make cuts. Many organisations are mounting challenges to these changes with the Disability Alliance pledging to take the government to court over this. If you feel angry, write to your MP and vent. It can make a difference www.writetothem.com

Meanwhile, the good news is that the days are getting longer and as I write this, the sun is shining quite gloriously. In this moment, that makes everything okay.

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