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5 ways learning to cook can help you live well with MS

4th December 2014 by Stephen

5 ways learning to cook can help you live well with MS

Preparing Christmas Dinner can be a daunting task for anyone who isn’t confident in the kitchen, but if you have MS there are extra challenges. Emily Carey, a Specialist Social Worker in Leeds, has spent the last 13 years supporting people with MS and gained great insight into how MS affects people.

She has set up Get Cooking, an innovative new social enterprise that aims to bring cookery to everyone. Combining her specialist knowledge with her passion for food, Emily has worked hard to reduce barriers and develop new courses that work for everyone. Here she shares her thoughts on the benefits of learning to cook good, honest food.

Emily, founder of Get CookingBeing partially deaf myself I have some understanding of the importance of making things accessible. As a Specialist Social Worker, my role included looking at practical ways of helping people with MS, being emotionally supportive, aware, understanding and often creative in terms of tackling any sort of barriers and helping people to work out support plans. Here are my top five reasons why learning to cook can help you live well with MS.

  1. Cooking is good for your mood!
    I appreciate the invisible symptoms of MS and the impact it can have on emotions. Cooking and good food is great for the soul, people can skill themselves up in the kitchen and impress friends and family with their creations, but most importantly they can impress themselves and ignite a passion for cooking.
  2. Cooking is good for your confidence!
    Confidence translates from one area to other areas. I know too well from my own background that being faced with a disability or illness can impair your confidence and challenge your status and identity. Once you’re confident in the kitchen you can carry that over into other areas of your life. Get Cooking is taught in an accessible venue with a range of equipment and positive, it’s very much a glass half full! Courses all have themes and allow people to build on skills each week.
  3. Learning to cook can make you feel more independent!
    Learning to cook inspiring dishes can give you a great sense of freedom, Get Cooking recipes have been designed with people who have MS in mind. I understand that you don’t always have the energy or the time for complications so I created simple good recipes with pictorial instructions that are easier to follow.
  4. Cooking is a great way to socialise!
    Cooking for friends and family is a great way to socialise. Attending cookery courses in a friendly group environment can reduce the feeling of social isolation. Courses all have themes and allow people to build on skills each week. It’s all about having fun – enjoying food and life.
  5. Cooking for yourself is healthy!
    Preparing meals using whole foods avoids the need to rely on ready meals or take away. Once you know how to prepare simple, tasty dishes, you will realise that it’s just as convenient to make them yourself.

To find out more about Get Cooking or to sign up for a course, visit the Get Cooking website or email Emily at contacts@get-cooking.org.uk (If you are from the Leeds area and meet the criteria for Adult Social Care services then you may be able to use direct payments to fund courses: ask Emily for more details).

For more information on living well with MS, see our free information sheet.

And see our blog post on Urban Chefs, set up by Jonathan Reen, who has MS, which offers cookery classes in your own home.

my-supper-soc-mediaAnd once you’re cooking confidently then why not take part in the MS Trust’s My Supper For MS? This is a great way to raise funds for people affected by MS, all from the comfort of your own home. Find out more and download your free My Supper fundraising pack!

 

MS Trust supports Disability Benefits Consortium on Fitness to Work assessments

3rd December 2014 by Shan Teo

We know that the government’s changes to work-related benefits are hitting people with MS hard. As you may know, as a small charity the MS Trust restricts the government policy work we do specifically to health issues.

We believe that everyone with MS is entitled to a full life, even if we don’t have the capacity to work in all areas. Around work-related benefits, we support the work of the Disability Benefits Consortium, who have far more expertise than we do. They issued a press release on 28 November around Fitness to Work assessments, which included the following statement:

“The fit to work test is failing disabled people, with devastating consequences. Wrong decisions can mean people are left with little or no support at all, in some cases struggling to pay for their homes and basic essentials like food and heating. Significant changes need to be made urgently to stop disabled people suffering at the hands of the process as it currently stands. The test has to be more than a box-ticking approach and properly recognise the barriers many disabled people face in getting and staying in work”

As its objectives, the Disability Benefit Consortium states that it is committed to achieving a benefit system that:

  • Is built on the rights of disabled people;
  • Is informed by the needs and experiences of all disabled people;
  • Is fair in its design and administration;
  • Is transparent and accountable;
  • Supports disabled people to meet the extra costs associated with disability;
  • Reflects the reality of the challenges faced by disabled people seeking work;
  • Recognises the individual needs of all disabled people (regardless of factors such as impairment and age);
  • Contributes towards tackling disability poverty and interacts with other government measures to achieve this;
  • Tackles misunderstanding about disability and the support disabled people may need from the benefit system.

Find out more:

http://disabilitybenefitsconsortium.wordpress.com/

Could you be an MS Trust sofa superstar on #GivingTuesday?

2nd December 2014 by Shan Teo

Could you be an MS Trust sofa superstar?If you haven’t already noticed, today is the first official UK Giving Tuesday. Giving Tuesday is a campaign that began a few years ago in the US, as an antidote to the Christmas shopping season, which traditionally begins for Americans on the Friday after Thanksgiving at the end of November.

Since then the idea has spread around the world, and this year charities across the UK are taking part for the first time, offering people a remedy to Christmas spending, and reminding people of the  good causes that need support.

Of course in the bleak UK midwinter, fundraising might be the furthest thing from your mind. Does the thought of running a 5K makes you reach for the ice cream bowl and the remote control? Does a a coffee morning or cake sale sound like a smashing idea… until you remember last night’s burnt cheese on toast?

Don’t worry! At the MS Trust we love everyone who wants to help. It’s never been easier to support our work, so here are three ideas that you can do from the comfort of your own sofa!

  1. Affiliate shopping – Do you do a lot of your shopping online, on websites such as Amazon, Sainsbury’s or Debenhams? Did you know we offer affiliate shopping with them, which means you do your shopping as you usually would do using a link on our website and, hey presto!, we get a percentage of what you spend, but to no extra cost to you! Easy peasy!
  2. Raise awareness online. Are you on Twitter or Facebook? If you are, please like our Facebook page and follow our Twitter account. Then you can help us share and retweet our MS-related posts. There are over 100,000 people in the UK living with MS and we would love to reach all of them and let them know about the work of the MS Trust. To do this we need your help!
  3. Spread some festive cheer by buying and sending MS Trust Christmas cards and ecards. Christmas cards were central to the founding of the MS Trust and are still play a vital part in funding our crucial work. This year we have a particularly good selection – and remember 100 per cent of profits go funding our work!

And  if you’re already thinking ahead and planning on some more energetic activities for the new year, why not check out our full range of events for 2015?

“It’s OK if it’s a shock to you” – people share their experiences of diagnosis with MS

28th November 2014 by Nicola Pates

Most people clearly remember their own experience of diagnosis and are keen that others have a smoother ride. Some new videos explore this.

Whether it was a shock or largely expected, being diagnosed with MS can leave you in a bit of a whirl. Looking back, how did you cope?  What could you have done differently and what would you suggest to someone diagnosed today? People with MS have taken part in a series of videos to pass on their experience and offer support to anyone who has recently been diagnosed.

What is your advice to someone who is newly diagnosed with MS?

Suggestions include:

  • “Whatever is right for you, you need to do.”
  • “Don’t feel pressured by yourself or by anyone else around you.”
  • “Don’t scare yourself and just take things one step at a time.”
  • “Don’t make snap decisions.”

And some perspectives on diagnosis,  now that a bit of time has passed:

  • “It’s OK if you’re not OK. It’s OK if it is a shock to you.”
  • “Every person’s MS is different.”
  • “It’s very much about me. My MS is about me.”

What next?

If you have recently been diagnosed, you might like to look at our website which has a section especially for you. We have information for people who are newly diagnosed and more videos that may be helpful. You can browse the topics and choose to read a few Fast Facts or you can Dig Deeper if you’d like to know more.

Fundraiser Chris prepares to cycle from California to Colorado

28th November 2014 by laura.percival

Inspired by his mother who has MS, Chris Orfeur has decided to take part in a mammoth cycling challenge across the rugged American West to raise funds for the MS Trust. Here he tells us more about taking on the Race Across the West.

Chris Orfeur

In June 2015 I will be flying to Oceanside, California to compete in a solo bicycle race that is 860 miles long. This distance has to be completed in just 90hrs. The route runs across the west of America through four states, ending in Durango, Colorado.

I’ll be looking to ride my bicycle for 18 to 20 hours a day to cover the distance in good time, trying to average 300 miles a day. But I will not be alone on the road as I’ll have a race crew following behind me in a camper van. The crew will be made up of my closest friends who will have various roles such as catering, orienteering and more importantly comedy value!!

I’ve always enjoyed my cycling, having gone on bicycle tours around Europe where I’ve climbed in both the Alps and the Pyrenees, but those tours have been at a more sedate pace where finding the most scenic spot to stop and cook some lunch is my main priority.

I have had some experience taking on challenges such as charity runs and bicycle rides before, but nothing of this magnitude or intensity.

Why did I choose the MS Trust? Well, to be brief, in 2007 my mum’s life completely changed when she was diagnosed as having multiple sclerosis. So after seeing how much a person’s life can change in a moment I thought it was best I put being a young keen cyclist to good use and raised money for a charity close to my heart!

Visit Chris’s fundraising page on Virgin Money Giving

Potential change for the NHS in Wales

26th November 2014 by Shan Teo

New care standards have been unveiled by the Welsh Government, to improve standards of care throughout the NHS. They’ve gained more urgency after care scandals were reported at the Princess of Wales hospital in Bridgend and Glan Clywd hospital in Rhyl.

The new, improved standards of care are collated into a Health Standards Framework, which is based around 7 quality themes. These are:

  • staying healthy
  • safe care – including a requirement that people in Wales protect themselves from known harm;
  • effective care
  • dignified care
  • timely care, which includes a commitment that people in Wales are actively involved in decisions about their care
  • individual care
  • staff and resources – oddly enough this is not a commitment to staffing levels, but that people in Wales can find information about how their NHS is resourced and make careful use of them

In the same week, a new four year plan that will move more healthcare into the community, in theory provide services closer to home, and start to integrate health and social care services has also been outlined. Our plan for a primary care service for Wales up to March 2018 sets out the following commitments. It’s difficult to see how some of these will be met within the four year timeframe:

  • healthcare will be planned and delivered locally – assessment, treatment and ongoing care will be available in or as close to people’s homes as possible with rapid and more local access to more specialist clinical advice;
  • access to services will be improved – more use of modern technology and better information, advice and assistance to support effective self care and care from a wide range of the right professionals, including pharmacists and nurses, on the same day, either face-to-face, on the phone, by e-mail, instant/video messaging;
  • quality of services will be improved – to support improved health and self care, there will be more co-production of care, more integrated teams of health and social care professionals working around the person, who are trained to provide a wider range of more personalised care, acting on feedback on patient experience and peer review;
  • equitable access – tackling the effects of poverty by planning and delivering care which is proportionate to need to reduce the gap in health outcomes – such as low birth weight and life expectancy – between the most and least deprived communities; increasing access to care in the Welsh language.

The Welsh Government believes that this ambitious policy for primary care will help to improve health within Wales while continuing to reduce the cost of the NHS.

Making Sense of MS helped 14-year-old Amy deal with diagnosis: we need your help to reach even more people

21st November 2014 by Stephen

Amy wearing her MS Trust wristband
Amy modelling her new MS Trust wristband

If you’re a subscriber you’ll have seen that the new issue of our free newsletter Open Door, out this week, leads on our new resource Making Sense of MS.

We hope Making Sense of MS will make a real difference to people at the moment they’re diagnosed, giving them the facts about MS in a discreet, accessible booklet, and helping them find more detailed information when it’s right for them.

It’s already helped Amy who got in touch on Twitter to tell us. Amy is 14 and was diagnosed in August this year.

“I found out I had MS after about a year of symptoms which my parents thought was muscle strain,” Amy told us. “I went to the doctor and was instantly referred to the hospital in March 2014. I was diagnosed with demyelination after a month of testing, an MRI scan and a lumbar puncture. Then after persisting on-and-off symptoms, I was diagnosed with relapsing remitting multiple sclerosis.”

Being diagnosed with MS is never easy, but it can be particularly hard news to take in if you’re a teenager. “I knew barely anything about MS at the time of diagnosis,” says Amy. “I thought I would go blind but my doctor said that wasn’t a symptom for me.”

When she was diagnosed Amy was given the MS Trust Young Person’s Guide to MS and told that the MS Trust website was a good place to go to find out more about MS.

“I had a lot to find out and the MS Trust website and Making Sense of MS helped me find all that me and my family needed for the time being,” says Amy. “I found the How to tell people section really useful. It helped me tell my close friends, as well as talking to my school in a meeting about MS. It gave me a boost of confidence to help talking openly about my illness. I also showed my parents as they were both struggling to come to terms with my diagnosis.”

We were only able to develop Making Sense of MS thanks to the support of people like you. Now we need your help to make sure we reach even more people like Amy.

On average, around 15 people are diagnosed with MS every day. A gift of just £15 will help us deliver the little blue book of MS to each of them, helping them find the information that’s right for them, when they need it most.

You can make a gift right now on our online donation form or by calling 01462 476700.

Find out more about how your donations support our work.

 

Loom bands in MS Trust colours

18th November 2014 by laura.percival

Fiona Grant from Cambridge tells us why she has decided to make loom bands to help support the work of the MS Trust.

Described by The Mirror as the tween craze that became a must-have fashion accessory, and spotted on the arm of more than the odd celebrity, loom bands have become increasingly popular. Their prevalence inspired me to make these friendship style bracelets, which can be worn by men, women and children, in MS Trust colours.

I wanted to raise awareness of MS and the work of the MS Trust. My Dad was diagnosed a few years ago now and currently lives with secondary progressive MS. He is very impressed with the work of the MS Trust and offers them financial support. I, too, would like to show my support for the valuable services the MS Trust provides.

I hope my loom bands will be seen as a stylistic alternative to the official MS Trust wristband. Similarly I hope they will serve the purpose of raising both money and awareness. 100% of proceeds go to the MS Trust. While there are only 30 loom bands currently available on my ebay listing I pledge to make more if demand dictates.

Visit Fiona’s ebay shop to buy a loom band for just 99p (plus P&P)

Loom band on wrist Three loom bands

Have your say about Northern Ireland’s ehealth and care strategy

14th November 2014 by Nicola Pates

If you live in Northern Ireland, the Health & Social Care Board (HSC) is asking for views about its new strategy to improve the use of electronic and digital information within the health and social care system in the province.

The strategy has six objectives:

  • Supporting people
  • Sharing information
  • Using information and analytics
  • Supporting change
  • Fostering innovation
  • Maintaining and improving what we have

Many of the outcomes are tied to concrete objectives, such as giving individuals better access to their own records, and reducing the amount of time health professionals spend entering information into notes. Some of the questions that the HSC would like responses to are as follows:

  • how far should the HSC be using eHealth technologies to help people look after their own health and wellbeing? This includes things like websites, mobile apps, online support tools, social media (eg Facebook and Twitter), and personal text or email messages
  • how far do you agree that options such as booking appointments, repeat prescriptions, email questions to doctors, texting care professionals and similar services would be useful?
  • if a health or care professional uses a computer to support their decision making whilst in a consultation, would that help, hinder or have no effect on the conversation?
  • how useful would it be to have access to your eHealth records (ie your electronically held patient records?)

They also ask about your opinion on sharing health information among health professionals, about security of health information and about whether expanding eHealth in Northern Ireland might foster economic development, for instance by encouraging new software companies to develop.

The MS Trust won’t be responding to this consultation but if you live in Northern Ireland and feel strongly about this, please do!  There is a paper list of the questions to the consultation at the back of the leaflet, or you can respond to the consultation electronically.

The consultation closes Friday 9 January 2015 at 5pm.

15 minutes with… TV journalist Stephanie Scawen

13th November 2014 by Nicola Pates

Stephanie Scawen

Last year the Al Jazeera TV journalist Stephanie Scawen presented MS and Me, a film about coming to terms with her MS and investigating the significance of the latest MS research. This year she was keynote speaker at the MS Trust Annual Conference, our event for MS healthcare professionals

What kind of feedback did you get after MS and Me was broadcast?

The feedback was amazing. Most comments were very supportive of me with lots of comments about how brave I was, which was very flattering as I personally don’t feel brave. Things are just the way they are. I had many offers of snake oil cures and treatments which I just ignored, and many links to an American woman MD’s online video about how she cured her MS by eating bucket loads of kale every day (yuck), which also seemed to be a bit of a scam to me as all she really seemed to be doing was trying to flog her book, rather than exposing her cure to scientific scrutiny. But overall the feedback was amazing.

You said your ambition for the film was “To show people with MS that they can do whatever they want to do. You just have to approach it slightly differently.” Do you think you succeeded?

I hope so. For people who are not disabled or who do not have first-hand experience of dealing with someone with disabilities, it’s very hard for them to imagine what life is like being unable to do things as normal. The idea, for example, of losing a leg in an accident, would be for many people unbearable. But when they are confronted with that reality they get on with it, because you just have to. Look at all the Paralympians who do such amazing things!

When we last spoke you were coming round to the idea of using a mobility scooter or a wheelchair. Did you go ahead with that? If so, how are you finding it?

When my left leg started spasming towards the end of last year it was the most sensible thing to do in the end, as my walking had become so slow and difficult and I was in a lot of pain, so a wheelchair just meant I could get around more quickly and safely. And the sky didn’t fall in as I had feared. Generally people have been very helpful with it. And I get to queue jump everywhere which is good. I’ve had a few ‘exciting’ episodes with my chair which I discussed in my speech. It certainly ain’t boring.

We’re delighted you agreed to speak at this year’s MS Trust conference. Having travelled the world as a journalist, reporting from war zones and scenes of disaster, did the prospect of speaking to a room full of MS professionals hold any fears for you?

No. I was more afraid no one would understand my sense of humour!

As a journalist do you have any thoughts on how MS – or potential cures – are covered in the media?

Most articles are reasonably balanced, but it annoys me that they pretty much always refer to MS as a crippling disease, as if a diagnosis instantly places you on the scrapheap. For the majority of people it’s not. There’s an old media phrase “if it bleeds, it leads”, so the headlines will always focus on the best or worst outcome. “Scientists find cure” or “MS drug kills patient”, for example.

And the headlines talk about a cure as if it will be on the shop shelves tomorrow. I wish I could say journalists should check their facts for accuracy or at least balance, but in this world of 24-hour media the critical details seem to get missed out.