Open Door August 2016

Page 1

Open Door Quarterly newsletter of the MS Trust

August 2016

How do we design health services that work better for people with advanced MS? We look at new ways to make MS care fair

Also in this issue: Stem cell therapy: time for a roadmap

What is a brain healthy lifestyle?

Practical tips for dealing with balance problems

How MS blogs and support

s d i k The ! t h g i r l a are

Showing your support for the MS Trust doesn’t have to mean running a marathon or jumping out of a plane. At the MS Trust we know that it’s never too

! " • have seasonal fun with our Reindeer Rally Run • do some amazing awareness-raising with a Be Bo old in B lue eve ent Bold Blue event # Dress Down School # Dress Do own at Sch hool Day • or betterr yet, co ome up w ith something sometthing all of come with your own n! $

own! $

01462 476700 or visit mstrust.org.uk/kids-clubs

Contents

Welcome to the August issue of Open Door! 4 All of us at the MS Trust had a moment to D 9 < +

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years ahead.

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Pam Macfarlane Chief Executive, MS Trust

News therapy and explain what we think

8+ 9

*

8

Research update % : daytime sleepiness

11

How can we design services that work better for people with advanced MS

14

Staying active ;

* : < &

16

Keeping your balance*

18

Light in the darkness + :

20

Get involved! = (

> latest opportunities to get involved

22

N3 If you’d like to donate to : OPEN44 £2 to 70070

15 minutes with... MS Trust supporter Tim Sorrell

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with the Information Standard. % %

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News

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email round-up mstrust.org.uk/newsalerts

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mstrust.org.uk/information/news

M S T R E ATM E N T

In June there was widespread coverage of results from trials of an aggressive form of stem cell therapy which Many of you will have seen the *

P that this aggressive form of the 9 $ : of MS. % 3/

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drugs. Treatment involved harvesting destroying their immune system %

them to restore the immune system >

3112 311E % 9 period ranged from four years to twelve and half. The main aim of the study V 9

survival’ after three years. This !

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X 9 a relapse and eight showed

0X treatment. The treatment is not without risks and one of the trial

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high-dose immunosuppressive = ! 0X %

unrelated to their treatment. = % ! 8+ MS visit mstrust.org.uk/

stem-cell-guide

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News

M S T RU S T P E R S P EC T I V E

Time for a roadmap Amy Bowen from the MS Trust explains how the latest trial gets to the nub of the issues surrounding stem cell therapy for MS and why it’s time for a roadmap for making the treatment safe and widely available on the NHS / well in all the measures that the %

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relapses. This was over a F 23 \8

no neurologist and no The haematologist undertakes a powerful and still experimental treatment lightly.� % had either relapsing remitting MS or were

progressive MS. In

D % 8 ! from the treatment and this is

P $ positive result.

A heavy price

L hearts go out to the family of this

P just drives home the risk that is still inherent in this treatment. No and no haematologist undertakes

a powerful and still experimental treatment lightly. These are major

9 9 9 arise. % : maximum amounts of safety P

Where do we go from here? % %

% $ =*% R U ! 9( 9 K; ! 9 up data on how they do over time.

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" # ! # ! with MS who would gain ! of the risks #

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modifying therapies that have : ! R U with the maximum amount of % % !

people with MS.

Open Door August 2016 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

5

News Report calls for neurology care to be delivered closer to home Report aims to improve community services for people living with a long-term neurological condition % % ] * 8

8+ % for people with long-term \

^ P around institutions rather than

: % around the patient and delivered

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P

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patients. It goes on to provide 8+ > X ( %

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! through our work with MS teams around people with MS and some people with MS do nurses and therapists they need. % see their MS team less often and

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report to stimulate the delivery organised around the person

P is essential reading for every ^

H what we’re doing to 22 and at mstrust.org.uk/ forwardview

Open Door August 2016 Facebook: facebook.com/mstrustuk Twitter: @mstrust

Daclizumab (Zinbryta) gets European licence % 0 * R0*U granted marketing authorization Y R[ U treatment of adults with relapsing X Y 9

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P X0*PX0 Y /7 2 R= :U P 'P 7/ lesions after nearly two years of Y 2 H

mstrust.org.uk/daclizumab

New research in brief Disappointing results from opicinumab (anti-LINGO-1) study > R 9 (P8)L92 &PP&166U

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& analysis of the data in order to plan further studies. To read more visit mstrust.org.uk/antilingo Fasting-mimicking diet studied as potential MS treatment =

of fasting may have a role in ' a diet that involves eating half the

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of quality of life. To read more visit mstrust.org.uk/fast-diet

News Why not volunteer this Christmas? Volunteering for the MS Trust in a Cards for Good Causes shop at Christmas can be a great way of learning " " " " # 0 % * * ) * K; % *

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looking for volunteers to help in 9 * shops in the six-eight week lead *

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for the duration of the season. All that is asked is having made a

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skills and meet new people in a friendly environment. All the while the MS Trust. = G ( 9

% ! to see a list of shop added later in the year so register mstrust.org.uk/ advise if a shop shop-volunteer opens in your town.

MS Life 17-18 September 2016 If you’re planning on attending this $ ( look out for the MS Trust stand. % ( 0:* ( ( ! time and will host a programme of

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tinyurl.com/mslife2016

Open Door August 2016 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

7

Research update

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weekly email mstrust.org.uk/research

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results and investigate the longer

Can exercise increase brain-protecting molecules in people with MS? Authors P Title &

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& 9 : P 33 2E R4 U : R27 U Those in the sedentary group did programme and were told to

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sedentary group.

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Open Door August 2016 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

9

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Open Door August 2016 Facebook: facebook.com/mstrustuk Twitter: @mstrust

ADVANCE D M S S ERVICES

How can we design services that work better for people with advanced MS? & = %

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Should people living with MS remain

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preventing MS teams delivering

Our survey of almost 2,000 people living with MS showed that people with progressive MS saw much less of their MS specialists than people with relapsing MS. Read the full report at mstrust.org.uk/care

What does good care look like for someone with advanced MS?

What are the barriers to MS teams delivering this care?

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Open Door August 2016 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

11

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How do current models work for people with advanced MS? % K;

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Open Door August 2016 Facebook: facebook.com/mstrustuk Twitter: @mstrust

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for this model to work? P

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they had an appointment with a ~ most important things that they should

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where and how they need it. / % with MS to stay healthy and

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Open Door August 2016 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

13

STAY ACT I VE

Grit and determination

312/ Kadeena Cox 9 % )& > '

Did you know much about MS when you were diagnosed? P P ! P

and worked with people who have MS. +

P G $ think that something like this is going to P$ so at one point I thought that this was

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Were there any challenges in making the transition into being a para-sport athlete? +

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Who inspires you? If you ask many people within the sport

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everything in the sport and is a great role ~ 0

that’s the grit and determination that I admire so greatly.

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When did you set your sights on Rio 2016? P P ' > 9 ! P P to put in hard work to get to where I am P$ P$ P P$ to ensure I’m on the podium this summer.

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You studied physiotherapy at university – is this something you plan to do professionally? G

something I’ve wanted to do for P !

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Open Door August 2016 Facebook: facebook.com/mstrustuk Twitter: @mstrust

day life.

How have physiotherapists helped you as an athlete and in everyday life? They have helped me manage my H

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What would be your advice to a young person who’s just been diagnosed with MS? % P $

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Getting the endorphins going Judy Beveridge /7 & ! P$ J

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sometimes partly true. I was \8 worried I outside with the fresh air ^ overdoing

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use it or lose it with MS’. My MS team at Southmead hospital in & G

: getting your heartrate going and endorphins D P < <

This summer we’re going to the Tandem

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Open Door August 2016 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

15

P R AC PRAC PR A C T I C A L TI PS ACT

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may mean you walk more tentatively or try not to put

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If you have ataxia you may tend to walk with your

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Open Door August 2016 Facebook: facebook.com/mstrustuk Twitter: @mstrust

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What can I do? # P )>

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Tips for better balance # % • Stand up slowly after lying or sitting # % >

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balance-exercises more upright.

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avoiding falls order our free

36 mstrust.org.uk/pubs

Open Door August 2016 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

17

MY Y S TO O RY R

W en Me Wh Mell Ho H pp p err was diaagn gnos osed os ed d wit ith h MS MS iin n 20 2008 8, sh shee feelt lt liikke sh shee haad ‘sstu tumb umb m le l d in nto o dar a kn kness’ ess’ es s’. But Bu ut wh when en en sh he di d scov ovver e ed e blo l gss an nd d for o um ms fo f r peeo op plee liv ivin ng wi with ith th long lo ng g-t - errm he heal a th con nd diiti t on ons ns sh s e fo f u un nd th the pers peers rson onal on aall

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she sh he st s arrteed her he ow he own n blog blog bl o at many ma m any nyle lemo le mo s.c mons mo .com om o m - her e e sh he

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system that measures worth in terms of V $ P these lifestyle interventions. That regular

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Open Door August 2016 Facebook: facebook.com/mstrustuk Twitter: @mstrust

Forming new habits P

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P P you the knowledge you need in order ! P you to investigate what’s out there and management of your life with MS.

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Where to start? )

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+ % $ The MS Trust Facebook page and group % H F : & % H % =

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Shift.ms D expert interviews and self-help tools. H $ ! ] " shift.ms

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Grace Quantock ) Y P

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Living Like You % 8

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Stumbling in Flats &

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Open Door August 2016 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

19

GET I NVOLV ED

Eurostars! 0

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has MS. Edward Quigley

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determination to make sure his life was not going to ! P that shows how inspirational our friend is to us. H 3127 > % =

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elation achievement

London to Paris Tour de France ride > % = /3 % H ( > < _ = /3 J N51 111 = ( > R % H ! U

another opportunity to get involved. If you or anyone you know would ( > 2E 36 < 3124 % C H mstrust.org.uk/londontoparis ( 12/,3 /4,414

Open Door August 2016 Facebook: facebook.com/mstrustuk Twitter: @mstrust

) 0 % P 8 ]L (] 0 X

Where there’s a will... The MS Trust is part of Remember A Charity, a consortium of over 140 charities set up to raise awareness of the importance of by leaving gifts to charities. In advance of Remember A Charity Week, which will take place from 12 to 18 September, MS Trust supporter Carol tells us why she has chosen to leave a gift in her will. =

MS Trust and I was so P

3114 H P to know just what the MS Trust means to people with I’m still volunteering P$ P$

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J % F people with MS and their families say the Trust has of living with MS. I also know from my work at the Trust how tough it $ P $

Get involved! % ng involved and support our work helping

+ J % ! mstrust.org.uk/fundraising

Suppor everyon t e living with M S

Cambridgeshire Skydive Day < 6 * = ! % P $ J mstrust.org.uk/jump

Send MS Trust Christmas cards L % of MS and the MS Trust. mstrust.org.uk/christmas

Volunteers needed! *

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$ mstrust.org.uk/shop-volunteer

Santa Run, London < X

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London to Brighton bike ride P $ C J 7/ 22 P $

N211 mstrust.org.uk/london-brighton

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211 K; need information and support. If you would like to ~ % ! the work of the MS Trust 12/,3 /4,414 visit mstrust.org.uk/fundraising

Grand Canyon Trek < 26931 3124 ! ) * mstrust.org.uk/grand-canyon

"" work of the MS Trust call 01462 476707 or visit mstrust.org.uk/getinvolved

Open Door August 2016 Freephone 0800 032 3839 mstrust.org.uk info@mstrust.org.uk

21

15

minutes with

MS Trust supporter

Tim Sorrell

Tim Sorrell is a Planning Manager living in Nottingham. Since being diagnosed with MS he has twice run the London Marathon, with his wife Caitlin, in support of the MS Trust. He tells us why he runs and why he believes it’s important to support our work When were you diagnosed with MS? P 3117 % C $ 311E P ! ! P

B ! P L P P P < #

As well as a general loss of sensation P$ 21927Π9 D : % P P _ P and needles and many of the symptoms 9

P$

( R U P $ Why do you support the MS Trust? & P $ these symptoms and to not know what’s >

spending a lot of time going through 9 $ % % information when you are at your most ; % everyone to understand that they don’t have to go through this alone.

22

You’ve recently started guiding visually impaired runners. What’s that like? P $ do something so simple to help someone

J P ( J : during a parkrun gives you a healthy dose How did you feel after completing your second marathon for the MS Trust? 0 H 711 3, 3

( P $ P$ 3124 What do you get from running with your wife Caitlin? 3127 9 9 spend all that time together and to fully :

$ $ P ! knowing that I needed to run it again on = 312, F * /1 P

$ You and Caitlin have raised £12,800 this year. What’s your experience of fundraising been like? %

over again this year and it’s their kindness ( the going got tough during the marathon. N4 311 3127 $

Open Door August 2016 Facebook: facebook.com/mstrustuk Twitter: @mstrust

this year. That money will make a massive P $ What would you say to someone with MS who was thinking about taking on a challenge like this? X > $ F F $ G

P $ $ P $ ! Can you tell us about your new tattoo? P ! P P

P$

P$

C < + " > % P P J 3, 3 G $ : up to you.

7 71 % ' * opportunities to support our H mstrust.org.uk/running

Information from the MS Trust For a full list of resources or to read online visit mstrust.org.uk/pubs Making Sense of MS

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Books " management guide 9625 X drug therapy 9E1

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= " people like you. I’d like to make a donation of N7

N21

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* 8 8

Valid from

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P 01462 476700 or online at mstrust.org.uk/donate P

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Boost your donation by 25p of Gift Aid for every ÂŁ1 you donate! ) = : : G

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Return to MS Trust, Spirella Building, Bridge Road , Letchworth Garden City, Herts SG6 4ET ' 2155676

Are you sitting comfortably? % % % % %

Are you sitting comfortably? A self-help guide to posture in sitting ~ Falls: managing the ups and downs of MS see the order form overleaf or visit mstrust.org.uk/pubs

>

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