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Today’s MS Trust 21 Challenge: write a letter to your local paper!

18th April 2014 by stephen.trousse

writeTo celebrate 21 years of providing free, positive practical information, in the run up to this year’s MS Awareness Week we’re running the MS Trust 21 Challenge: 21 ways in 21 days you can get involved and make a difference for everyone affected by MS.

Today’s challenge is to write a letter to your local paper raising awareness of MS. Even in these days of smartphones, tablets and social media, getting coverage in your local paper can often still be the best way of reaching people in your community. You could share some of our key facts about MS, letting more people understand what MS and how the MS Trust can help. If you’re holding a Be Bold In Blue fundraising event it can be a great way of getting more people involved. Alternatively you might want to say a public thank you to your local MS nurses or other health professionals and encourage people to take part in our MS Super Team awards.

If you need any assistance we’re happy to help: give us a call on 0800 032 3839 or email info@mstrust.org.uk

Today’s MS Trust 21 challenge: nominate your MS Super Team!

17th April 2014 by stephen.trousse

MS Trust 21 challenge: nominate your MS super team imageTo celebrate 21 years of providing free, positive practical information, in the run up to this year’s MS Awareness Week we’re running the MS Trust 21 Challenge: 21 ways in 21 days you can get involved and make a difference for everyone affected by MS.

Today’s challenge is to take part in our My MS Super Team campaign. If you’re affected by MS you’ll know what a difference good MS specialist health professional can make. Whether they’re an MS nurse, a neurologist, a physiotherapist or even a whole team, they can often make all the difference in helping you keep on top of your condition. If an MS health professional has gone the extra mile for you why not nominate them for our MS Super Team awards? This is a great way of saying thank you and also raising the profile of their work. You can read some of the recent nominations here and make your nomination here. We’ll be announcing the winners in MS Awareness Week (28 April–4 May).

Watch out for more challenges in the days leading up to MS Awareness Week!

Today’s MS Trust 21 challenge: Be Bold In Blue at work!

16th April 2014 by stephen.trousse

Be Bold in Blue at Work imageTo celebrate 21 years of providing free, positive practical information, in the run up to this year’s MS Awareness Week we’re running the MS Trust 21 Challenge: 21 ways in 21 days you can get involved and make a difference for everyone affected by MS.

Today’s challenge is to organise a Be Bold In Blue fundraising event at your workplace or community centre. You could ask colleagues and friends to dress up in blue, wear blue wigs, paint their nails blue. All the money you raise will help us continue to provide free, reliable information for everyone affected by MS.

Last year staff at Tesco in Bristol Whitchurch raised £535 by having a Bold In Blue event in their store. That could fund our information team to provide detailed answers to questions from 30 people affected by MS!

Visit our Be Bold in Blue pages for more ideas, blue merchandise and information packs.

Watch out for more challenges in the days leading up to MS Awareness Week!

Today’s MS Trust 21 Challenge: set up an MS information stand!

15th April 2014 by stephen.trousse

MS Trust 21 challenge - organise an MS information standTo celebrate 21 years of providing free, positive practical information, in the run up to this year’s MS Awareness Week we’re running the MS Trust 21 Challenge: 21 ways in 21 days you can get involved and make a difference for everyone affected by MS.

Today’s challenge is to raise awareness about MS and the free MS Trust information that help people with MS manage their condition and live life to the full. This could be as simple as putting up one of our posters in your work kitchen, your local library or health centre. If you’re a bit more ambitious you could try organising an information stand at a local community centre or GP surgery. You could even organise a talk with people with MS and MS health professionals talking about what MS is and what support is available.

We can provide a whole range of materials to help you, including posters, books and leaflets. If you’d like to find out more call 0800 032 3839 or email info@mstrust.org.uk.

Watch out for more challenges in the days leading up to MS Awareness Week!

 

The MS Trust 21 Challenge starts today! Are you signed up for our free MS newsletter, Open Door?

14th April 2014 by stephen.trousse

Cover of the MS Trust newsletter Open DoorToday we’re launching the MS Trust 21 Challenge. To celebrate 21 years of providing free, reliable, positive information, in the run up to this year’s MS Awareness Week (28 April-4 May) we’ve come up with 21 ways in 21 days that you can get involved and make a difference. Whether you’re raising funds or raising awareness your efforts could change the life of someone living with MS.

Today’s challenge is to sign up for or spread the word about our free newsletter, Open Door. Four times a year Open Door brings you all the latest news from the world of MS, keeping you up to date with new research, new therapies and new drugs in a positive accessible way. We also introduce practical tips to keep healthy and active, share positive stories of people living with MS and look behind the headlines at the stories that are causing a stir. Unlike other MS magazines, Open Door doesn’t carry any advertising, so you can be sure you’re receiving independent, evidence-based information, helping you to sort the facts from the hearsay. You can see back issues of every issue online.

Do you receive Open Door? Do you know someone living with MS who doesn’t get it? Signing up is simple: give us a call on 0800 032 3839, fill in your details online or send us an email and you’ll receive the new issue due to go out at the beginning of May. You could be opening the door to a whole world of positive, practical MS information.

Watch out for more challenges in the days leading up to MS Awareness Week!

Have you nominated your MS Super Team?

11th April 2014 by stephen.trousse

MS Trust My Super Team flyerWe’re now just a couple of weeks away from MS Awareness Week 2014 and your nominations for the MS Trust My Super Team Awards continue to flood in. It’s inspiring to see that so many of you receive great quality care from local MS health professionals and have been moved the share the stories of how they have helped you. Of course we understand that not everyone is so lucky. Jane from our Information Team has written a very useful blog post about what we can do if you feel there is a gap in your MS service.

There’s still time to nominate the MS health professional or team who’ve made a difference to you. We’ll be announcing the winners in MS Awareness Week (28 April– 4 May).

This week a few nominations stood out. We received a touching nomination for Denise Middleton and Lesley Catterall, two MS nurses based in Milton Keynes.

“They are the greatest. So helpful, caring, kind, considerate and uplifting. They make you feel good about yourself, always at the end of the phone ready to help and give advise. They are both Super Stars!”

We’ve also received nominations from many people telling us how grateful they are for their local MS therapy centres. The Wessex MS Therapy Centre in Warminster received some particularly glowing words:

“All the staff and volunteers treat me with so much respect and kindness that I’m sure they help my MS as much as the treatments. I usually arrive feeling pretty bleak but I leave not only feeling physically better but  thinking ‘I can do this’.”

Meanwhile Dr Ali Mahmoud, a neurologist at Calderdale Royal Hospital in West Yorkshire, was singled out for praise:

“I know that as our consultant it was Dr Mahmoud‘s job to try and resolve my husband’s problems but I feel that really went over and above what could be expected in this age of a target-driven approach. He rang me regularly over a three month period to monitor our situation and included us both in discussion to form a future plan. Dr Mahmoud is the first person to really understand how the pain affects my husband. I am confident that when another relapse occurs Dr Mahmoud will do all he can to support us.”

To nominate the MS team or team members who’ve gone the extra mile for you, visit the MS Trust My Super Team nomination page.

RideLondon-Surrey 100 as a lone rider

11th April 2014 by laura.percival

John Nicholson has supported the MS Trust for a number of years and last year he took part in the first ever RideLondon-Surrey 100 event. He completed the event in 6hrs 45 minutes and raised just over £2,000.

John (pictured) tells us how he prepared for the ride and shares his top tips for anyone considering taking part in RideLondon or a cycling event like this.

John Nicholson

Training:

As I prefer off-road cycling I chose to carry out the majority of my early training on my mountain bike along the South Downs. I built up to 50 miles off-road using the hills of the South Downs to build good leg strength as I knew the roads in my area would offer little in the way of hill training for Box Hill and Leith Hill.

I got to June and then realised I would have to buy a road bike for these final months of training. I was lucky enough to get a suitable bike from a friend for a couple of hundred pounds, which meant I could sell it immediately afterwards without being out of pocket. One thing you start to realise when fundraising privately is that it can cost you quite a lot of money personally for entry and kit, so I always go second hand where possible and recoup by selling on afterwards.

Bike Mechanics:

The day before the race there was another issue, I suddenly started panicking about tyres after finding a lot of little slits in the road tyres – you never see these on mountain bike tyres! I convinced myself it would end in disaster if I didn’t buy new tyres so this sees me the day before the ride changing the tyres and re-fitting the wheels. I then found that the brake blocks now rubbed massively on the front wheel, so much so it wouldn’t run free! After three hours of mild panic, and visions of slogging out 100 miles on a mountain bike, I managed to strip down the brake and put it back together in better working order… PHEW!

I also had my gears serviced one month before the event, only to find out that they were worse than when I took it into the bike shop! The lesson here is make sure you leave enough time to check out your bike following any work that you or a bike shop has carried out. There is a bike mechanic at the start point though for any dramas on the day.

The Ride:

When you book your car parking for the event make sure you consider how well you know London as you need to find your car from a different point at the end – more on this little adventure later!

The start area is large with plenty of toilets, the bag drop, and water facilities. There are a few places to buy food for the ride such as energy bars and, as mentioned above, there was also a mechanic’s tent for last minute concerns.

The start is managed as well as a mass event can be, but as you can imagine there is a lot of waiting around as all the waves get called up. The buzz as you move closer to the start gets more and more intense and you feel your adrenaline pumping waaay before you need it to.

Once started, the miles flew by. I found that my average speed was much higher than in training and before long I had readjusted my time from 9hrs down to 7hrs. And very quietly I was thinking I would do even better than that! If this is your first long road ride, like it was for me, don’t be fooled by those first 40 miles as I was – it’s adrenaline that’s making you faster not a sudden, overnight, leap in ability!

One target I had set myself was to do everything possible to ride all the hills, no pushing, just ride! I had in my mind that Box Hill was the one that might challenge this target the most, but actually Leith Hill was harder. But I managed it with burning legs.

The feeling of riding on closed roads was amazing. Sometimes I found myself in a group which pulled you along and allowed you to chat and forget the discomfort. Other times I was alone with only a couple of other riders in sight, which gave me time to think about how things were going, how much my backside hurt and how far I could go with the amount of fluid I had left in the bottles.

Box Hill arrived and was lined with spectators. It was really hard going, but a great feeling as you rode over the names of riders like Wiggins and Cav painted on the road. The support from the spectators was amazing throughout. I found myself going from quiet country lanes with only my thoughts for company and a few cyclists dotted around, to rounding a bend into a town or village to be met with shouts and claps of encouragement. It was an amazing feeling and really spurred me on.

The ride was not without its challenges both mentally and physically as you can imagine over 100 miles. Once I got to 75 miles things got a little tough. The bike pump that had been rattling for 75 miles now became a major source of irritation and was eventually removed and squeezed into a pocket. The queues at the water stations became a waste of valuable time rather than a social occasion. The crowds cheering brought on a weird emotional feeling rather than the adrenaline buzz of earlier, and my legs were shot! Thinking back now this is where the faster than average pace in the first 40 miles came back to bite with a vengeance. Every little hill – despite the crowd telling me “It’s OK there are no more hills” (LIARS!) – every little incline was a Box Hill and this last 25 miles was rather tough to say the least.

Then I was back in central London, riding past the various landmarks, realising it was close to being over, realising I had completely smashed my anticipated time of 9hrs and also the revised time of 7hrs (I do have a leaning towards pessimism when predicting race times).

And here was The Mall, the cacophony of noise from the spectators banging the plastic sponsor signs which lined the finishing straight was just awesome! The pain was forgotten for those few hundred meters and elation filled me, and a little bit of pride I think. Next thing I know I am having my photo taken with my medal and wandering around in a bit of a daze, wondering what to do next. I plonked myself down under a tree in Green Park (I think) and proceeded to drink and eat the contents of the goody bag. Once all was consumed and feeling slightly sick I got up to figure out a way to get back to the car.

After the ride:

Now I won’t go into the detail of what occurred next other than to say that it involved lots of pedestrians, China Town, Leicester Square, quite a few bridges, a lot of internal swearing, and two hours of car park hunting. And to top it all off I was stopped by a lady with a bike who asked if I wouldn’t mind fixing her puncture for her as I looked like I might know a bit about bikes! I fixed it with a tired smile.

So, going back to my point right at the beginning, make sure you plan a route back to the car or park close. Even better than that, have someone collect you and take you home.

It was an amazing event, I’m so very glad I did it and would recommend it to anyone.

Top Tips:

  • Make sure your bike is serviced and had everything done that you need at least two weeks before the event.
  • Remember tyre levers, puncture kit and pump
  • Bring two water bottles
  • Bring something to carry food in such as a bum bag or frame bag
  • Don’t start off too fast
  • Make sure you are comfortable with your saddle and shorts
  • Remove any annoying rattles – it will drive you insane at some point no matter how small
  • Make sure you are absolutely sure how to get back to your car
  • Take it all in, enjoy the crowds, and enjoy the traffic free roads
  • Do some hill training!

Find out how you can take part in the 2014 RideLondon-Surrey 100 for the MS Trust

Have your say about the NHS complaints process in Wales

2nd April 2014 by Nicola Pates

Mark Drakeford, Health Minister for Wales, has appointed Keith Evans, former Chief Executive of Panasonic UK, to conduct a review into how complaints and concerns are handled within the NHS in Wales.

Keith Evans has asked anyone who has recently had a complaint handled by the NHS in Wales to send confidential feedback on their experience to the review team. They are asking for positive as well as negative experiences, to find out what worked well and why, as well as poor experiences and why these were negative.

The review will:

  • review the current process to determine what is working well and what needs to improve
  • consider if there is sufficiently clear leadership, accountability and openness within the process
  • identify how the NHS in Wales can learn from other service industries
  • consider the wider cultural ‘patient’ service ethos and how staff are supported to deal with patient feedback
  • identify how the NHS can demonstrate it is learning from patient feedback

The deadline for comments is 21 April 2014.

Individuals – both patients and the public – can email their confidential feedback to
puttingthingsrightreview@wales.nhs.uk or write to: Keith Evans, Aneurin Bevan University Health Board Headquarters, St Cadoc’s Hospital, Lodge Road, Caerleon, Newport NP18 3XQ

Alice Hamilton, Policy Officer

Say thanks and nominate your special MS health professionals for our Super Team awards!

28th March 2014 by stephen.trousse

MS Trust My Super Team flyerIn the build up to this year’s MS Awareness Week (28 April–4 May) we’re asking you to tell us about the MS health professionals who have gone the extra mile for you. Whether it’s an MS nurse, a physio, an occupational therapist, or even a whole MS team, you can nominate them for the MS Trust My Super Team awards. This is a great way to say thank you to someone’s who’s made a difference for you and to raise awareness of what a great job MS specialists do.

Our flyers and forms have only been out a few days and already the nominations are flooding in.

Karin from Llandudno nominated her physiotherapist, Sam Muthusamy:

After the initial shock of diagnosis, I was referred to my physiotherapist, Sam Muthusamy at Llandudno Hospital.  Not only did he help me relieving my spasms with special exercises, he helped me regain hope and self belief which I seemed to have lost.

Natasha from Sunderland nominated her MS nurse Barbara Wingrove:

Barbara has been fantastic from day one. She is always on call if I have any questions, comes to see me every time before treatment and explains everything thoroughly, ensuring me and my family understand what will happen, what is happening and what I should do.

And Pauline from Wigan nominated the whole MS team at the Walton Centre in Liverpool:

This may sound funny but I really look forward to my appointments with Dr Wilson and the MS nurses at the Walton Centre Liverpool. I know no matter how I am feeling, I will come away feeling better.

These are just a few of the testaments to the difference that specialist health professionals can make to people living with MS. There’s still plenty of time to nominate the person or team who have made a difference to you. Visit our nomination page and look out for posters and flyers at your local MS centre. If you have any questions give us a call on 01462 476700.

 

Monster Ski update from Chamonix

18th March 2014 by laura.percival

The MS Trust’s sixth Monster Ski challenge is currently underway and 15 skiers are out in Chamonix, France, attempting to ski the height of Mount Everest every day for three days, all in aid of the MS Trust! Russell Hardy, Chair of Trustees at the MS Trust, is taking part in the challenge and he will be sending us regular updates, which you can read below…

DAY 1 – Monday 17 March

The first day of the Monster Ski challenge was unbelievably hot! The temperatures reached 20 degrees in the early afternoon. As a result, all the Monster Skiers were out very early to try and reach their goal of 30,000 vertical feet every day. With the help of two great ESF ski instructors, Fred and Beatrice, the intrepid international crew of Monster Skiers achieved their objective with time to spare to enjoy the late afternoon sun. There were no injuries but day two is certain to include many aching muscles!!

Monster Ski group

Monster Ski group in Chamonix

DAY 2 – Tuesday 18 March

Day two was again an incredibly hot day. We headed to Grand Montagne at the other end of the Chamonix valley for another early start. The day consisted of more hard and fast skiing, particularly in the morning as we tried to beat the ever rising temperatures. The sky is very blue but the spring sun makes the snow very slushy from midday onwards.

The trip is proving once again how much people who come on the Monster Ski love it. Equally we have had a number of people asking us about the challenge whilst we are on the slopes and we have had people donate to the MS Trust cause who have seen us rushing past them.

We again achieved the goal of 30,000 feet despite increased tiredness from us all, but as we approach the third and final day we can see the end is in sight.

Monster Ski group in front of snowy mountains

Members of the Monster Ski group on day two

DAY 3 – Wednesday 19 March

The final day of the Monster Ski started with more glorious blue skies. Under very icy conditions the Monster Skiers worked hard to complete their mission before the combination of tired limbs and slushy snow made things too difficult. However due to their commitment everyone achieved the goal of skiing the vertical height of Mount Everest every day for three days.

For future Monster Skiers it really is a significant challenge but immensely rewarding and all who have taken part this year would thoroughly recommend it for future participants. For those who have sponsored us this year we are immensely grateful. We all appreciate the demands placed on us all to give generously to worthwhile causes but the money you have given will have a real impact on people with MS and their families.

To celebrate the 2014 Monster Ski an Awards Ceremony was held on the last night. The winners were…

1. Award for youngest ever person to complete the Monster Ski – Amelia Chambers
2. Award for party animal of the trip and not looking wrecked the following day – Mitchell Longhurst
3. Trip Advisor guru Joint Award – Michelle McLaughlin and Kathleen Hannon
4. Most prudent and tidy skier award – Stephen Matthews
5. Cheeky chap award – Rory Watson
6. “I can ski on one leg if I need to” award – Paul Grout
7. The Franz Klammer award for speed and occasionally reckless skiing – Chris Biagini
8. Tidiest and most understated quality skier award – Boozy North
9. Perfect form and style despite massive back pain award – Del Hopgood
10. Best father for carrying his daughters skis everywhere award – John Chambers
11. The Madam Faff, dark horse skier, bit of a bandit award – Sarah Burgess
12. The most understanding partner award – Breanne Biagini
13. The surprisingly loud snoring and irritating good skiing award – Robbie Hardy

Monster Ski group

Russell Hardy

Find out more about Monster Ski