MS Matters_103_magazine

Transcription

103 May/June 2012
‘ Yes, I have MS.
And ...?’
Janis Winehouse
gets on with her life
Sex matters
When MS interferes
with intimacy
The benefits
rollercoaster
What to do if your
ESA is cut
CONTENTS
03
UP FRONT
Celebrating volunteers and carers
04
NEWS
Fourth respite care centre transferred to new owners,
new exercise guide, and more
06
LETTERS
Accessible dental check-ups, air travel for
wheelchair-users, and more
10
‘YES, I HAVE MS. AND ...?’
Janis Winehouse gets on with her life
14
FOOTSTEPS TOGETHER
Jinx and Selena Jones talk about how their lives
have changed as she has required more care
16
EVERYBODY NEEDS GOOD NEIGHBOURS
Jackie Woodburne talks about playing a character
with MS in long-running soap Neighbours
18
SEX MATTERS
MS can affect sexual functioning, but there are
always new things to try
24
YOUR SOCIETY
MS Life, MS Week, the Society AGM and the
MS Helpline
28
THE BENEFITS ROLLERCOASTER
What to do if your Employment and Support
Allowance is cut
TALK ABOUT MS
MS Helpline
0808 800 8000
(Mon to Fri, 9am–9pm; Sat, 10am–1pm)
helpline@mssociety.org.uk
MS Society website forums
www.mssociety.org.uk/forum
Facebook group
www.facebook.com/MSSociety
Twitter
http://twitter.com/#!/@mssocietyuk
www.mssociety.org.uk MS Matters 103 01
UP FRONT
MS Matters is available
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and in large print.
For details, telephone
020 8438 0759.
MS Matters is a Multiple Sclerosis Society
publication ISSN 1369-8818
© Multiple Sclerosis Society 2012
Individuals or organisations wishing to reproduce,
store in a retrieval system or transmit by electronic,
mechanical, facsimile or other means any part
of this publication should apply for permission to:
MS Matters, MS Society, 372 Edgware Road,
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To receive MS Matters, contact the MS Society
Telephone 020 8438 0759
Email membership@mssociety.org.uk
MS Helpline 0808 800 8000
www.mssociety.org.uk
Registered charity nos 1139257 / SC041990.
Registered as a company in England
and Wales 07451571
Editorial Board
Sue Farrington, Hilary Freeman, Jenna Litchfield,
Sarah Mehta, Anita Roberts, Anthony Stone
Editor
Colin Richardson
Senior Editor
Sarah Westlake
With Volunteers Week in June, I wanted to start
the magazine with a big thank-you to each and
every one of the 9,000 volunteers across the UK
who, between them, give many thousands of hours
a year to make a difference to the lives of people
affected by MS. Volunteers are the lifeblood of
the MS Society and it is their dedication, time
and care that makes a real difference to the lives
of people affected by MS.
Indeed, volunteers played a key role in making
MS Life the incredible success it was – the weekend
event in April attracted over 3,000 people to
Manchester, making it the biggest single MS event
in the world. Thank you to all who made it happen
and to everyone who took part.
A thank-you also goes to everyone who played a
part in helping to complete the transfer of our respite
care centres to new providers, who will continue
offering services for people with MS. The last of these
to be transferred was Helen Ley in Warwickshire in
April. It was a long and sometimes difficult process,
but we are pleased that we achieved what we set
out to, following the respite care review back in 2010.
We will now be focusing more than ever on providing
more support, information and opportunities for
people with MS in all corners of the UK to access
the short breaks and respite that is right for them.
Finally, I can’t fail to note the terrific success of
MS Week. We raised vital awareness through the
media, including spots on BBC Breakfast and ITV’s
Daybreak, reaching millions of people. We created
videos that have been viewed more than 20,000
times and experienced unprecedented interest
on Facebook and Twitter, with celebrities including
Scott Mills and Gok Wan showing their support.
Thousands of people also held a Cake Break,
contributing thousands of vital pounds to the cause.
So a final thanks to everyone who took part – we
couldn’t do it without you!
Volunteers’ Week runs from 1 to 7 June. For more
information, visit www.volunteering.org.uk or call
020 7520 8900.
Design
Crescent Lodge, London
www.crescentlodge.co.uk
Photography
Crescent Lodge, London
(unless otherwise credited)
For advertising sales, contact
Nima Azarian, Ten Alps Media Ltd
020 7878 2367
Printed in England by
Warners Midlands plc
Articles signed by the authors represent
their views rather than those of the MS Society.
Mention or advertisement by the MS Society
of products or services is not an endorsement
by the MS Society, its officers or staff.
From Simon Gillespie
Chief Executive of the MS Society
NEWS
Sport for all
everyday effects of MS’, that was launched
by the Society in MS Week. Simon Gillespie,
Chief Executive of the MS Society, said: ‘Because
it’s poorly understood, living with MS can turn a
simple shopping trip or social event into an ordeal
– where strange looks and hurtful remarks can
all be part of daily life.
‘Yet people with MS have the same aspirations
as anyone else. Most want loving relationships,
an active social life and a successful career
– and they can have this, given the right support
and understanding. Of course, MS presents
many challenges, but society can place further
unnecessary barriers in the way of people with MS,
making it harder than it needs to be to live a full life.’
The disability rights charity, RADAR (Royal
Association for Disability Rights), has published
a free guide to exercise and fitness – Doing Sport
Differently. With a foreword by former worldchampion wheelchair athlete Baroness Tanni
Grey-Thompson, the guide has a wealth of advice
and information for disabled people who want to
take up exercise or get involved in sport. It can be
downloaded from www.radar.org.uk or call RADAR
on 020 7250 3222 for a copy.
People with MS ‘must
accept they can’t have
the same opportunities’,
says survey
One in five (21 per cent) of respondents to a
ComRes poll of more than 2,000 British adults think
that disabled people need to accept they cannot
have the same opportunities in life as non-disabled
people. And almost three-quarters (71 per cent)
said they don’t know enough about MS.
A separate poll of over 1,400 people with MS
found that 42 per cent felt that they weren’t
considered equal to people without MS. Almost
one in three (30 per cent) said they have been
visibly ignored because of their condition.
More positively, 41 per cent of respondents said
that having MS had strengthened the bond with
their immediate family and almost half (49 per cent)
said it had led them to take up new hobbies and
interests. Over a third (37 per cent) of employed
people with MS said that their condition does not
impact on their work.
The results of the two surveys, commissioned
by the MS Society, were published in a report,
‘Fighting Back – ordinary people battling the
04 MS Matters 103 www.mssociety.org.uk
To obtain a copy of the ‘Fighting Back’ report,
download it from www.mssociety.org.uk. For
more about MS Week, turn to pages 24 to 25.
Transfer completed
for Helen Ley Respite
Care Centre
The MS Society has completed the transfer of
Helen Ley Respite Care Centre in Warwickshire to
Castel Froma, a charity based in Leamington Spa.
The new provider is committed to continuing to
offer high-quality care for people with MS.
All four of the Society’s respite care centres have
now been transferred to new owners – Leuchie House
in Scotland last year, and Woodlands in York and
Brambles in Surrey earlier this year. Helen Ley has
remained open throughout the transfer process.
Bookings can be made by calling 01926 313 550.
NEWS
Professor Martin Rossor, President of the
Association of British Neurologists, said: ‘We are
disappointed that the government has not committed
to establishing neurology clinical networks that
would provide comprehensive coverage across the
country. This is a missed opportunity that would have
brought clinicians together to make real progress
on improving patient care, spending money more
efficiently and mitigating service variation.’
New Blue Badge Guide
for London
Our Short Breaks and Activities (SBA) Fund
may be able to help with the cost of your break,
whether this is a short break, respite care, holiday
or activity. To find out more and to apply, contact
the Grants team on 020 8438 0700 or email
grants@mssociety.org.uk
Short breaks: a guide to short breaks and
respite for people affected by MS contains
further information on travel and holidaying in
general. It is available free from the MS Society
website at www.mssociety.org.uk or by calling
the Info Team on 020 8438 0799 (Mon to Fri,
9am to 4pm).
Neurology patients
‘betrayed’ by the
government, say charities
People with neurological conditions feel ‘thoroughly
betrayed’ by the government, according to the
Neurological Alliance, which represents 72
UK charities.
In recent months, as reported in previous issues
of MS Matters, both the House of Commons
Public Accounts Committee and the National Audit
Office have slammed neurological services as
‘inadequate’ and a waste of money.
Responding to the criticism, the Department
of Health (DH) refused to implement any of the
recommendations for improving services, such
as the appointment of a ‘Neurology Tsar’ to help
develop a strategy to deliver better services.
Steve Ford, Chair of the Neurological Alliance
and Chief Executive of Parkinson’s UK, said:
‘All the evidence from the Public Accounts
Committee and National Audit Office has been
dismissed by the DH. People with neurological
conditions feel thoroughly betrayed and can
have no confidence that this government has their
interests at heart. The next review is not for three
years and this has been a wasted opportunity.’
Sponsored by the London local authorities, the
new edition of the Blue Badge Guide for London
contains everything that registered blue-badge
drivers need to know when driving in the capital
– the location of parking bays, car parks and petrol
stations, and details of accessible tube stations,
taxi ranks, accessible toilets and shopmobility
centres. There’s also a useful directory of services,
along with parking options for disabled drivers at
the main London hospitals and sporting venues
and access information for all London theatres.
You can claim free postage and packing (worth
£2.50) for every order of the new guide. To order
your copy, please visit www.thepieguide.com.
At the checkout, enter LG12aff into the box
marked ‘discount code’. Alternatively, phone
0844 847 0875 or send a cheque for £5.99,
made payable to ‘The Pie Guide’, to:
The Pie Guide, Caledonia House,
223 Pentonville Road, London, N1 9NG.
LETTERS
Has Daphne considered the Community Dental
Clinics? They should be adapted to treat patients
who are wheelchair bound, or they might even
have a hoist and trained staff to help you onto the
chair. You might need a referral from your current
dentist or your GP before they see you. Of course,
all these issues came sharply into focus when
I was diagnosed with MS myself four years ago
and eventually had to stop working. But my advice
to you is to phone around dentists or community
clinics and see who can help you – there will be
someone out there who can.
The problem with dentists
In the last issue of MS Matters, we published a
letter from Daphne Wright, who was having trouble
finding a dentist who could treat her. Daphne
explained that she is unable to ‘hop on’ the dentist’s
chair ‘because I need hoisting everywhere’. Here
we publish a selection of the many letters we
received in response to Daphne’s appeal for help.
The General Dental Council has recently
introduced a list of specialists called ‘Special Care
Dentistry’. Dentists who have a particular interest
in treating patients with disability can join this
specialist list and they are then listed on the GDC
website. They can be found using the register search
at www.gdc-uk.org/pages/searchregisters.aspx
Sophie Williams, by email
Since I became wheelchair-bound, my dentist
has been treating me while I sit in my wheelchair
alongside his drills and the tools of his trade.
Occasionally, his nurse has to lend a hand,
but there is no problem with any of this.
Paul Sharkey, by email
I also have primary progressive MS and am
confined to a wheelchair most of the time. I am
unable to walk properly, but I can stand; however,
transferring to the dentist’s chair is extremely difficult,
especially as my body goes into ‘panic mode’ and
doesn’t respond. My husband comes with me to help;
he works away a lot so this is difficult for him.
I get on really well with my dentist and he is very
accommodating. The dental hygienist treats me
downstairs as I am unable to go upstairs to her room.
The dentist has looked into adapting his practice,
but it would be very difficult to do; but at least he
is showing some interest. Most dental surgeries
are situated in old buildings so this brings
problems to adaptations.
Anne Rampton, by email
My husband has secondary progressive MS and
is bed-bound for a majority of the time. His dentist
actually offered him home visits. If he can make
it in to the surgery he is seen in a room downstairs
and stays in his wheelchair, otherwise his dentist
comes to the house.
Rowena Williams, by email
Ralph Glazer, by email
As a dentist myself, I’ve treated many MS patients
over the years – some who simply needed a bit
of support as they sat down, some in wheelchairs
who couldn’t get onto the dental chair without
assistance and some who were housebound (but,
to be honest there’s not so much you can do without
equipment in someone’s home).
In some instances it’s possible to work with the
patient still in the wheelchair – even for fillings,
scaling and polishing. It depends on the equipment
being able to reach to the patient and the dental
surgery having adequate space for the wheelchair
– some simply don’t. It’s not terribly good for the
dentist’s back either, but, luckily it tends to be for
short periods of time only – which makes it easier
for both dentist and patient.
We can’t all ‘get active’
My step-daughter, Sarah, 34, is in a wheelchair
24/7, cannot do anything, has to be fed and
washed, and now has a catheter, which is most
degrading. Sarah’s life could not be more worrying
for her husband and her family.
Your magazine makes a strong point of telling
everyone how people with MS have not allowed it
to take over their lives. In Sarah’s instance, as with
many other people, this is not the case. People
like Sarah cannot find a way to deal with it.
LETTERS
You read some lovely stories in MS Matters, and
some do give great inspiration for people with MS
to fight and get on with their lives. For us and Sarah,
we are stuck in a way that makes you wonder what
is round the corner. You want Sarah to get up and
walk, to be able to speak properly, to be able to
feed herself. But, alas, this will never happen.
Your message to ‘get active’ will be of great
urgency and hope to many people with MS, but I
do hope people will also think of those who cannot.
Meanwhile, we will do our best this end to keep
Sarah happy and enjoy what she can do.
Christopher Brennan, by email
Flights of fancy
I read the article about the Heaths’ experience of
trying to board a Ryanair flight (MS Matters 102)
with shock and disbelief.
I was concerned with the seeming failure of the
official bodies to take a leading role in this case.
The Equalities and Human Rights Commission
(EHRC) is supposed to help people fight disability
discrimination and be our champion. Why did they
do nothing?
How many people will have to go through the same
before they take action and how many people will
simply stop using public transport to avoid any risk
of a similar experience?
I will certainly be lodging my concerns and
complaints with the EHRC about their inaction.
I’d like to encourage other readers to do the same,
so the EHRC can be in no doubt as to disabled
people’s concerns.
Mags Lewis, Leicester
What an absolute disgrace that Josephine and Paul
Heath had to go to all that trouble to get onto the
Ryanair plane. Not only the way Ryanair treated
them but the fact that no other passengers on the
plane offered to lend a hand. It would have been
so easy for Paul to have lifted her body weight at
one end if someone else had taken her legs. At
least, more dignified! Just one volunteer. I know,
as I have been lifted myself that way in various
situations many times. Yes I can understand why
the staff did not volunteer due to the so called
Health & Safety excuse, but the other passengers?
Most passengers on that plane should be thoroughly
ashamed of themselves. So let’s hope, don’t you
agree, that they never end up in a similar situation!
The failings of Ryanair and their attempt to blame
their sub-contractors is shocking. My daughter’s
experience – she has secondary progressive MS
– is similar but not as hard to bear.
A Mediterranean cruise was excellent and the
cruise line exemplary. The flight to Athens was
simple; her wheelchair carried in the passenger
section.
The BA return flight did not allow the chair on the
plane but insisted it went in the hold. I asked the
steward what the procedure would be if the plane
had to ditch and was told: ‘There are no personnel
or procedures designated for evacuating disabled
persons in such an event and the only thing your
daughter could do is stay in her seat and pray.’
On arrival, the wheelchair was brought to the exit
door but was damaged and could hardly be used.
BA did settle our claim for the cost of a new chair
and paid for a hire chair in the interim, however.
Better that, Ryanair!
W D Schwarz, Kent
Open-top cars
and blue badges
Re: June Turnbull’s letter about open-top cars
(Car-parking blues, MS Matters 102). My husband
has one, too, which he occasionally takes me
out in, and we always worry about putting my blue
badge on an open window shelf, what with all this
talk about blue badges being stolen. Does anyone
have any suggestions?
Judith Seymour, by email
Mrs C Nolan, by email
continues
LETTERS
Overcoming pain
The eyes have it
The article ‘Eyesight and MS’ (MS Matters 100)
was very interesting; so when I went for my
yearly field-test and eye check-up at Eastbourne
District Hospital today I took a copy with me
as I rarely see the same person twice and they
never seem to know about MS and eyes.
The Registrar read briefly while the drops
she had given me started to work. She then
said there were quite a few bits she didn’t know
so was very grateful. When finished with, she will
pass it around those in the eye clinic.
Many thanks for an interesting read.
Jenny Gearing, Membership Secretary, Uckfield,
Heathfield, Lewes & District Branch
Keep it to yourself
Yes, Karen Lewis (MS Matters 102), I agree with
you. I was diagnosed with MS eight years ago. My
symptoms were mild in their effect on my life and
I decided to tell almost no-one. I considered they
didn’t need to know. I was working overseas at
the time and my family and close friends in Britain
learnt by email and snail mail.
I am now retired and have changed my UK
address as well. Only a handful of people know of
my MS, just those who need to know in case I am
unable to fulfil my voluntary commitments. I would
rather not have people looking at me (‘in case
you’re not well’) or asking me in sweet, concerned
tones, ‘How are you today?’ As I tell a friend
locally: ‘Don’t fuss’. People do treat you differently,
so just say nowt, Karen.
Margaret Grebby, Lincs
I read John Houlton’s letter in MS Matters 102
about the amount of pain he is in. I wonder if he
knows what is causing the pain. I have secondary
progressive MS and I have had a lot of pain over
the last 20 years. It badly affected my sleep, as the
muscle spasms in my legs also caused hip pain,
which meant I was having to turn over in bed every
15 to 30 minutes and I was at the end of my tether.
My pain is caused by spasticity. My consultant
started me on gabapentin, but it only worked for a
while. For the last 11 years he has been giving me
intra-muscular injections of Botox into the muscles
at the top of my legs every three-to-six months,
depending on when the effects wear off. They work
really well and I wondered if this treatment would
help John.
Denise Earnshaw, Scarborough
Muscle spasms and stiffness (MS Essentials 19)
contains details of treatments for spasticity.
Download free from www.mssociety.org.uk or call
020 8438 0799 for a copy.
With reference to the article, ‘Keeping pain at bay’
(MS Matters 102), I wish to point out that several
members of the Society’s Leics branch have tried
to obtain Sativex through their medical professionals
and been told that it is unavailable. No reason
was given.
My conclusion is that it is due to cost. Cannabis
resin has a street value of £250 per ounce. Apart
from this prohibitive cost, it is also illegal to possess.
I would like to suggest that the Society applies for
a licence to produce cannabis for the purpose of
selling it to members who wish to carry out their
own research.
Your article exhorts sufferers not to ‘put up with
it’. I say, give us the tools and let us get on with it.
Martin Lennon, Leicestershire
Put your thoughts on
paper and send them to
MS Matters,
372 Edgware Road,
London NW2 6ND
or email msmatters@
mssociety.org.uk
PEOPLE
True to herself
Photography: Sharron Wallace
Janis Winehouse is not unused to giving press interviews. She
is, after all, the mother of the hugely talented singer-songwriter
Amy Winehouse. But when Amy died last summer, Janis could
have been forgiven for wanting nothing more to do with the media.
Instead, she has chosen to use her unlooked-for celebrity to raise
awareness of MS, something she knows all about from personal
experience. Colin Richardson meets a remarkable woman.
PEOPLE
You’d think that Janis Winehouse would have had
enough of journalists and photographers by now.
After the most difficult and appalling year of her
life, in which she went through a time of profound
grief and pain in the full glare of the media spotlight,
you wouldn’t blame her for wanting to draw the
curtains and turn her back on the world. Instead,
when we meet, she is in the middle of a round
of television and press interviews to publicise
MS Week.
This is typical of her reaction to adversity, for,
despite all that life has thrown at her and regardless
of what some headline-writers would have you
believe, Janis Winehouse is not a tragic woman.
Stoicism is more her style. She talks of ‘getting
on with it’ and of ‘keeping going’. Her mantra,
oft-repeated, is: ‘Yes, I have MS. And?’
Janis Winehouse never sought fame; it sort of
crept up on her. Nine years ago, her hugely
talented singer-songwriter daughter, Amy, became
a star at the age of 20 with the release of her first
album, Frank. Three years later, Amy was propelled
to international stardom when her single, Rehab,
became a top-ten hit in both the UK and the US.
From that moment on, she was rarely out of the
newspapers. With her distinctive look – towering
beehive-in-a-hurricane hairdo, Cleopatra eyes, lip
stud and multiple tattoos – and her complicated
personal life, Amy Winehouse was irresistible to
tabloid editors and paparazzi alike.
But fame exacted a terrible price. After a long
struggle with drug addiction and alcoholism,
Yes, I have MS. And ...?
minutely and cruelly documented by the popular
press, Amy died last July from alcohol poisoning.
Up until then, Janis had mostly kept a low profile.
She was seen at Amy’s side at various award
ceremonies and she gave one or two interviews,
focusing more on her MS than on her daughter’s
troubles, but that was about it. She largely left the
talking to her ex-husband, Amy’s father, Mitchell.
All that’s changed now. Janis is prepared to take
centre-stage, though only for good reason and a
good cause. She’s more than happy to talk about
MS, to raise awareness of the condition and to raise
funds for the MS Society. This poses something of
a dilemma for her, however. She’s understandably
reluctant to talk about Amy, yet she’s well aware
that the media are only interested in her because
she’s Amy’s mother.
It’s a difficult line to tread and she’s already
almost come unstuck. She gave a live breakfast TV
interview (on ITV’s Daybreak) at the start of MS
Week. In the middle of a discussion about how her
MS affected her, she was suddenly asked how she
was coping since Amy’s death and was momentarily
lost for words. But it proved to be a minor hiccup
in an otherwise polished performance. Janis is
a television natural – a straight-to-camera piece,
filmed at her home some days before the live
broadcast, saw her convey powerfully and effectively
the realities of living with MS.
Janis was born in New York, 57 years ago, to
Jewish parents who had left London to pursue the
American Dream. ‘My mother, being my mother,
had a friend who had actually gone over to the
States,’ says Janis, ‘and had photos of them and
their house, their car, and my mother was like,
“Ooh, I can have some of that”.’ But Janis’s tailor
father ‘wasn’t adventurous; he wasn’t bold’ and
her mother’s dreams came to naught. So, when
Janis was 18 months old, the family returned
from the East Side to the East End.
When she was 17, Janis fulfilled a girlhood
ambition by going to live in the States for a brief
spell, where she worked as a pharmacy assistant
at the North Miami Hospital. Back in the UK, she
met Mitchell Winehouse, a taxi driver; they married,
and in 1979, when Janis was 24, their son Alex
was born. It was then that Janis began to experience
strange symptoms. ‘I had tingling, tingling in the
hands,’ she says. ‘I was referred to a neurologist.
When I went, it was always like, “Oh yes, Janis
Winehouse; possibly MS”. It was always “possibly”.
The fun part was that I actually had a lumbar
puncture. They said to me, “Whatever you do,
don’t get up, don’t get out of bed”. I said, “OK”,
and what did I do? I got up, of course. That
headache stayed with me for the week.’
continues
PEOPLE
The lumbar puncture proved nothing, however.
‘It sort of settled down,’ says Janis. ‘My GP, bless
him, was saying to me, “No, no, no, it’s not MS.
If it was, you’d be in a wheelchair.” Thank you.
So he described anti-depressants for me – postnatal. I thought, “OK”. So I got through that, got
back to work, with my son, and I just got on with life.’
Five years later, in 1983, Amy was born and life
went on. Janis worked as a pharmacy technician
and then as a lab technician at her son’s school.
She laughs at the memory. ‘Bless him, he was like
– it’s that thing, especially with teenage children
– you see your mother, you just walk on, don’t say
anything.’ She and Mitchell divorced; amicably,
she says. Amid all this, she somehow found time
to get an Open University degree and then to
qualify as a pharmacist in her own right.
She tried to keep the possibility of having MS out of
her mind. ‘I didn’t think about it because the moment
I thought it might be MS, I felt terrible; I had the woe.
The family were aware that there was something
wrong, but because I just got on with life, they did too.’
Nowadays, Janis lives in East Barnet, London, with
her husband, Richard Collins, 61. They first met
when they were both at the same youth club –
Janis was 12 and Richard, 16, was her athletics
coach. ‘We never lost touch,’ says Janis, ‘even
after we both married different people. We were
obviously meant to be together.’ They married last
September, having been a couple for four years.
They are both retired. ‘When I stopped working,’
says Janis, ‘it took me a while to get over that
because I missed it terribly.’
Being active is a
major thing ... I can’t
be anything else
At this point in the interview, one of her two
half-Burmese cats – given to her as kittens by
Amy – creates a diversion by chasing its tail around
the floor. ‘Oh, to be a cat!’ exclaims Janis.
Fast forward to 2001. Janis and her then partner
went on holiday to Italy. ‘Before we went,’ she says,
‘I wasn’t feeling well. I thought it was a virus, maybe,
so I’ll just go. I was dizzy, a feeling of nausea.’ One
day, they went to Pompeii and, in the shadow of
Vesuvius, Janis erupted: ‘I vomited at Pompeii.
I could not stand up, I was falling all over, unsteady,
and being sick.
‘When I came back, I could not work; I couldn’t
do anything. So I went to see my GP. He was like,
“Hmm, well, it might be a virus”. It did settle, because
I returned to work. I was a locum pharmacist,
which I loved, and I would sometime drive 50 miles
to one location just to do the day’s work, and the
day’s work would be sometimes up to 10 hours.
But that’s what I did and I just worked through it.’
But then, in 2003, Janis found couldn’t carry on.
Feeling dizzy and unable to drive, she was taken
to hospital by a friend. ‘I had the MRI then,’ Janis
says, ‘and they said, “Ah, yes, we can see it –
we can see lesions”. Finally, she was no longer
a ‘possible’ but a ‘definite’. The diagnosis was,
she says, a huge relief: ‘Everyone I know with
MS says, “When we get the diagnosis, it’s like,
oh good”. It’s the unknown that’s not good.’
Janis’s MS is now secondary progressive. Her
right leg is badly affected, and she uses an FES
(functional electrical stimulation) device – a small
box attached to her waistband that sends electrical
signals via thin wires to stimulate the lower-leg
muscles – to help with walking. When out and
about, she uses a stick. She takes cyclizine, when
necessary, to combat dizziness, and oxybutinin for
her overactive bladder. When we meet, she is due
to go to for an injection of Botox into her bladder
PEOPLE
What the MS Society
is doing
– a treatment for incontinence developed with
support from the MS Society. She is looking
forward to it because, like many people with MS,
she finds that ‘urgency’ – the need to dash to the
toilet at a moment’s notice – ‘holds me back’.
FES
Janis has tried several unproven treatments for
Functional electrical stimulation (FES) devices of
MS. She gave low-dose naltrexone (LDN) a go,
the kind used by Janis Winehouse can help with
but it did nothing for her. Janis also tried Esperanza, dropped foot and so improve walking. A neuroan unlicensed drug that has no clinical evidence in physiotherapist or other healthcare specialist will
favour of its efficacy. It cost her more than £7,000,
be able to assess whether FES would help you.
but it made no difference to her symptoms. She
You should be able to access FES on the NHS,
has tried to get her money back, to no avail. ‘People no matter where in the country you live. However,
should be very, very aware and not go for things
some local health authorities have refused to fund
that make promises without full medical backing,’
FES treatment. The MS Society has produced a
says Richard.
free guide, How to campaign for access to FES,
Janis goes to the Walthamstow MS Therapy
that will help you challenge any such decision.
Centre every week for yoga classes and
See below for details of how to get hold of a copy.
physiotherapy, and a physiotherapist visits her
Botulinum toxin (‘Botox’)
at home once a week. ‘It keeps her active,’ says
Many people with MS experience bladder problems.
Richard. ‘Yes,’ ripostes Janis, ‘and “she” doesn’t
An overactive bladder is common and can lead
mind. Being active is a major thing. When I was
to incontinence. A newly emerging, highly effective
having my hair done for my TV appearance, the
treatment involves injecting botulinum toxin
hairdresser was saying to me, “Well, it’s good
(sometimes called ‘Botox’) into between 20 and 30
that you’re keeping busy”, and I’m like, “Yeah.
different sites in the bladder wall. Research, including
And?” I can’t be anything else.’
work funded by the MS Society, has discovered
What’s keeping Janis really busy at the moment
that this therapy, which works by blocking muscle
is the Amy Winehouse Foundation, the charity
contractions in the bladder wall, can be very effective.
that was set up in Amy’s memory ‘to support
The treatment results in quite long-lasting
charitable activities in both the UK and abroad
benefits (generally up to around 10 months) during
that provide help, support or care for young
which urgency and urgency incontinence may be
people, especially those who are in need by reason
greatly reduced.
of ill health, disability, financial disadvantage or
Only people with MS who are willing to selfaddiction.’ Janis and Richard are Trustees, as
catheterise can use it because it is likely to make
is Mitchell. At the MS Society’s information and
complete bladder emptying difficult. The treatment
lifestyle event, MS Life, in Manchester in April,
is minimally invasive and has few side-effects,
Janis presented the Society with a cheque from
but is not yet licensed.
the Foundation for £20,000. ‘It was so important
Ask your GP for a referral to a urologist to discuss it.
to give something to the MS Society,’ says Richard,
‘because Janis’s health was always one of Amy’s
Managing bladder problems (MS Essentials 07)
prime concerns. Amy, and indeed Alex, were
A free publication from the MS Society with advice on
always, always concerned about Janis’s health.’
managing all the bladder problems experienced by
Janis agrees. ‘I always worked, no matter what,’
people with MS. See below for details of how to
she says; ‘even if I felt ill, I just kept on. But there
get hold of a copy.
was one occasion when I really didn’t feel well and
I went home and my son was so nervous, he was
like, “Oh mum, are you OK, are you OK?” It really
The MS Society’s free information booklets,
worried him.’ And that’s why she wants the donation
such as those mentioned here, are available
to be used both for research and for the support
for download from the Society’s website at
and recognition of children and young people who
www.mssociety.org.uk or you can obtain copies
care for a parent with MS.
by calling the Info Team on 020 8438 0799
Janis Winehouse will keep on keeping on. It’s
(Mon to Fri, 9am to 4pm).
how she copes. Her father died in January, but
she still manages to talk about what she has
and not what she’s lost. ‘People talk to me
To discuss in confidence any aspect of life with
about losing Amy,’ she says. ‘I haven’t lost her.
MS, call the MS Helpline on 0808 800 8000
She’s still with me. She always will be.’
(Mon to Fri, 9am to 9pm; Sat, 10am to 1pm)
or email helpline@mssociety.org.uk
The Amy Winehouse Foundation website is at
www.amywinehousefoundation.org
PEOPLE
Selena
The
importance
of having
‘me time’
When your husband is one
of your carers, you can
worry about how it makes
him feel. Selena and Jinx
Jones, who live in Cardiff,
talk to Anita Roberts about
their life together.
What the MS Society
is doing
‘Jinx and I got together when we were in our teens.
We separated, got married to other people. I had
three children, Jinx had five. Then we got back
together again about 12 years ago.
‘I worked for many years in marketing and PR
and when I gave up due to my MS I worked as a
magistrate for four years. My condition changed
and the fatigue was a real problem. Then it got
that I couldn’t write, so I stopped working.
‘Jinx also stopped working so that he could be
around more. He built a recording studio in the
garden. Music was always his hobby and when
he stopped working the studio became his lair.
‘In the beginning, I had one carer at a time.
These days I have carers all day, every day, and
in the mornings I have two people for three hours
at the same time. MS is tough on the bowels and
bladder, too, and I don’t want my husband to be
involved with my bowel and bladder things. I want
him to see me downstairs, looking lovely.
‘Things like my hair, make-up and nails are more
important than ever, and the carers are now make-up
artists and hair-stylists too. My appearance is
important for my self-esteem, so that when people
see me I look as I always have. I have always been
like that. I have never wanted to be seen in my
dressing gown.
‘Our home can often be a bit mad, so going out
is important. Luckily, I was never a great walker so
I don’t really miss going for long walks. I see someone
every day; I have become a lady who lunches.
‘Over the last few years some things have
changed drastically and my relationship with Jinx
has changed, subtly. I look back at my old self,
and think, “I’m disabled; he isn’t”. It frustrates me
that he has taken on my disability. For example,
I can’t walk on the beach; he can, but won’t, and
says, “I wouldn’t want to go without you”. Whilst
this is very lovely, I feel I’ve made him disabled.
‘My youngest child is now 18. He was 12 when
two of my carers, Sandra and Jane, started and
Mary, too, has been here a few years. They are
like aunts to my children and have helped me
to continue to be the mother I was before I got
so disabled.’
Photograph supplied by Selena Jones
Research into the needs of male carers
The MS Society funded Prof Julia Addington-Hall to investigate
the needs of men caring for people severely affected by MS.
In the two-year project at the University of Southampton, her
research team interviewed male carers to better understand
their support needs. Based on this work, a survey was
developed to gather the experiences of male carers across
the UK. We hope to see the results of this ground-breaking
research published later this year.
PEOPLE
Jinx
‘Selena’s MS has changed my life. I have always
been a musician, but it was difficult gigging and
going to work and helping her too.
‘We were very busy and it took us a while to get
used to the change in our life and life with carers.
Now the three girls who look after Selena are
like family. We are very lucky that they are such
nice people.
‘Our kids are older now, but it is still a busy
household. I am a sociable person but I need my
own time and my own space, so having a studio
is a way of getting back a bit of my life.
‘It gets me down sometimes. I am not a good
“morning person” and there might be three or four
people around. It takes me a while to come round,
and it’s a struggle for all involved, but they know
me now, and they generally are quiet. I have trouble
with my back so we rely on someone to get Selena
up and dressed every day. It is getting to a point
that I am struggling so much we have talked about
somebody coming in the evenings to help her to
bed, but neither of us are ready for this yet.
‘We miss not having a holiday. I know that there
are all sorts of places that offer facilities for the
disabled, but each holiday has been increasingly
difficult as her condition has worsened. We have
found a place in Spain where you can hire all the
equipment that you need, and if we go there I think
we will take a carer.
‘I don’t like to think I am “on duty” caring for
Selena. That is awful. I don’t mind doing what I do.
We just get on with life. I think if you saw us you
would think that we are fine. We don’t know what
will happen next, but we will cope with it.
‘I recently wrote a song for Selena – it was
prompted by us going to a friend’s wedding. She
was concerned that people would look at us and feel
sorry for me as she is now so disabled. We thought
we could sell the song to use it in a positive way to
raise funds for the MS Society.
‘Selena is a very positive person and we have a
very good relationship. We talk a lot and everything
is generally out in the open. Selena is not ever
depressed, which makes my life easier. I think
I am very lucky.’
The man’s guide to caring for someone with
multiple sclerosis is a free guide from the MS
Society. Download from www.mssociety.org.uk
or call 020 8438 0799 for a copy.
You can buy Jinx’s song for Selena, ‘Footsteps
Together’, at the iTunes store (itunes.apple.com)
or follow the links from the MS Cymru Facebook
page at www.facebook.com/msscymru
Carers Week 2012 runs from 18 to 24 June.
This year’s theme is ‘In Sickness and Health’ and
the MS Society is playing a leading role. The MS
Society is one of the event’s partners, alongside
Carers UK, Age UK, Crossroads Care, Macmillan,
Marie Curie, Parkinson’s and Princess Royal
Trust for Carers. To find out more, visit
www.carersweek.org or call 020 7378 4955.
PEOPLE
EVERYBODY
NEEDS GOOD
NEIGHBOURS
It’s so good to
be able to help
demystify MS for
the general public
Susan Kennedy first appeared in
TV soap Neighbours in 1994. In 2009,
she became the longest-running
female character in the series and
has been played for all that time
by Jackie Woodburne, an Australian
actress who was born in Northern
Ireland. Jackie talks to Sarah Westlake
about playing a character who,
in 2007, was diagnosed with MS.
PEOPLE
experiences and my research
When she got the script saying
that Susan Kennedy, the character that MS is different for everyone,
so if my work has touched
she plays in Australian TV soap
Neighbours, was to be diagnosed anyone in any way then I’m
really honoured.’
with MS, Jackie Woodburne
To research the role, the
had an unusual reaction. ‘It was
producers
put Jackie in touch with
really strange,’ she says; ‘I had
MS
Australia
(the MS Society
this feeling that a really good
of
Australia).
‘They really helped
friend of mine had been diagnosed
me
with
my
research,’
she says.
with MS. I’ve been playing Susan
‘One
of
the
volunteers
there
for a long time and I think of her
actually ended up doing a
as a friend. It actually upset me
cameo appearance on the show
for a little while. But then I had
to meet the challenge as an actor.’ as someone who manages their
condition well and just gets on
Jackie had a little bit of
with their life. Through them I’ve
knowledge about MS before the
role demanded that she knew
met some extraordinary people
a lot more. ‘I have a few close
who live extraordinary lives.’
friends who are affected by MS,’
Susan Kennedy was a school
teacher when she arrived in
she says. ‘A very good friend of
Ramsay Street, but is nowadays
mine does, but she is luckily not
particularly affected, and lives
a high-powered newspaper editor.
Jackie talks about how Susan,
almost symptom-free. I also had
ignoring the advice of former
a family member with MS who
husband Karl (Alan Fletcher)
was very severely affected and
and under pressure from her
tragically ended up taking her
boss Paul (Stefan Dennis) is
own life. So I had a real insight
and could understand from these left exhausted by her job. ‘She’s
working 24 hours a day to try
to get the paper to take on a
different form,’ says Jackie, ‘and
is running herself into the ground.
She’s unable to stop the trembling
in her hand, is quite dizzy and
her vision becomes blurred – all
indications of an MS relapse, which
would be her worst nightmare.’
Jackie understands that working
and having MS isn’t always easy.
‘If things are going well for people,’
she says, ‘if they are not being
hampered at that moment by
the condition, I can see how the
temptation would be to just keep
on going. They might not put any
measures in place to ensure they
stay fit and healthy in the long run’
Every time MS is talked about
sensitively in something as
far-reaching as a popular soap
like Neighbours, it has a huge
effect both on people with MS and
the wider community. Facebook
pages, talk forums and Twitter
feeds are usually abuzz whenever
an MS storyline is played out
– often with outrage at how
People are
really happy
that we are
addressing
the issue
unrealistic it all is. The MS Society
is often asked to consult on
TV programmes and theatre
productions when there are
MS storylines.
‘It’s so good to be able to help
demystify MS for the general
public,’ says Jackie. Most people
don’t know anything about the
condition, and unless it affects
them, why would they?’
Jackie helps raise awareness
in other ways, too. ‘I’ve done the
MS Australia Walk and Fun Run
a few times,’ she says, ‘and
that‘s been amazing. Whenever
my schedule allows it, and if
I can, I always try to do anything
MS Australia ask me, I’m always
really happy to help.’
And when she is out and
about, and in the fan mail she
receives, people are universally
positive about her character and
the way Jackie is portraying the
onset and diagnosis of MS.
‘People are really happy that
we are addressing the issue and
that in doing so we are building
awareness in the community,’
she says. ‘People feel able to talk
to me about their experiences with
MS, and that’s really touching.
I’ve really learned a lot, I’m more
sensitive to things in the news
about MS now. I keep track of
the latest breakthroughs and
am always so happy to hear
when research looks like it’s
getting somewhere.’
Neighbours is broadcast in the
UK on Channel 5.
The MS Society has produced
three short films that show what
it’s like to live with the symptoms
of MS. You can view them
at www.msfightback.org.uk.
Please share them with your
networks to raise awareness of
MS. For more about the films
and about the Society’s report,
Fighting Back, launched recently
during MS Week, which sets out
to challenge public perceptions
of MS, see pages 4 and 24
SPEAK OUT
The ecstasy and
the agony aunt
It can sometimes feel as though
there are three parties involved
in all of your intimate relationships
– you, the other person and your
MS. But having MS may mean that
you have to adapt and try new
things, but it doesn’t mean you
have to stop thinking of yourself
as a sexual being.
MS Matters looks at what can
be done if MS starts to interfere
in your sex life, and our resident
agony aunt, Hilary Freeman,
gives some frank answers to
some very personal questions.
If circumstances hadn’t forced us to
develop our sexual relationship, we might
never have discovered the depth and variety
of feelings and experiences that are now
part of our whole life, not just our sex life.
Joanne
MS can affect your sexuality in three main ways:
firstly, it can directly affect sexual functioning;
secondly, other symptoms may indirectly cause
some difficulties; and finally, MS can affect your
mood, your desires and emotions.
MS and sexual functioning
Sexual arousal, response and orgasm require
messages to be sent between the brain and sexual
organs, via the spinal cord. If there is MS-related
nerve damage in the parts of the brain and spinal
cord that are involved, this can have an effect
on sexual function. This damage affects men
and women differently.
Women
Vaginal dryness can make sex painful or
uncomfortable for a woman. It can be a result
of MS, or it could be a side effect of certain
medications such as anti-depressants. Menopause
can also cause dryness. Liberal use of lubricants
– there’s a wide variety on sale in your local
pharmacist and online – can help. If you’re using
condoms, then be sure to use a water-based
lubricant. If you feel that your medication may
be the cause of the problem, talk to your doctor.
Probably the main sexual concern for women with
MS is a reduced ability to orgasm.
Since my last relapse, I find it impossible
to orgasm. I just don’t have normal
sensation anymore and all the usual
foreplay ‘tricks’ don’t work. I still enjoy the
intimacy of sex and want to do it, but my
boyfriend is starting to avoid it. Will I ever
get sexual pleasure again? Help!
Vicky, 34
iscovering that pressing the old buttons
no longer leads to a climax can be one of
the unexpected – and extremely upsetting –
consequences of MS for many women. Unfortunately,
scientists have not yet developed a simple orgasm
pill for women. However, the brain is by far the
biggest sex organ, which is why many women
are able to climax in dreams, with no physical
stimulation. This means that even if you experience
altered or reduced sensation in your nether regions,
it may still be possible to reach orgasm. It might
just take longer, and feel slightly different.
Make it clear to your boyfriend that you’re still
interested in sex and still enjoy sexual contact by
talking to him about this and by being affectionate
and tactile. Think back to when you were a teenager:
do you remember how exciting a long, passionate
kissing session could be? Why not re-live this?
You may have to be less spontaneous than before.
Set aside time for sex; diarise it if needs be. Sex
therapists often use a technique in which couples
spend an allocated time-slot simply stroking each
other, progressing in stages to full intercourse over
a period of weeks. This can take the pressure off
and help to re-establish intimacy. If your time-slot
arrives and you’re too fatigued, reschedule it.
You need to get to know your own body again,
learning what sensations now feel pleasurable.
Communicate this knowledge to your boyfriend.
Don’t be afraid to experiment. Try different positions,
different locations, even watching romantic/erotic
films together. Discussing your sexual fantasies
D
SPEAK OUT
his must be very distressing for you. About
70 per cent of men with MS have problems
getting erections, which can be a direct result
of damage to the nerve pathways in the brain or
the spinal cord or a side effect of some medications.
But it’s worth remembering that you are not alone.
Nearly all men experience problems getting or
keeping an erection at some point in their lives,
with over 50 per cent of over-40s having erectile
problems. There’s a lot of help out there.
Please make an appointment with your doctor
to talk about this. It’s such a common issue
that you really need not feel embarrassed. If the
problem is caused by any medication you are
taking, then it may be possible to try an alternative.
Your doctor may also be able to prescribe a drug
such as Viagra, Levitra or Cialis, which work by
increasing blood flow to the penis. Whatever you do,
don’t buy medication online: you won’t know exactly
what you’re getting (there are lots of dangerous fakes)
and you need to know how to take it correctly to
avoid side-effects. In addition, there are many
manual devices, such as vacuum pumps,
available, which your doctor can discuss with you.
T
can be a huge turn-on. Most people’s sex lives
get stale if they don’t spice things up from time
to time. Sex toys can be very helpful – particularly
vibrators, which can provide intense stimulation.
Perhaps you and your boyfriend could go to a friendly
high-street retailer and choose some together.
Or, if you’re too shy, there are several online outlets
(and you’ll receive your goodies in discreet packaging).
You may not have exactly the same sex life as
you did before MS, but it can be just as fulfilling.
Men
For men with MS, the greatest sexual difficulty
is likely to be an inability to get an erection. This
may be as a direct result of nerve damage caused
by MS, though it is important to note that most
men, whether or not they have MS, will experience
erectile difficulties at some point, particularly as
they get older.
There are medicines that can help. Drugs such
as Viagra, Cialis and Levitra are taken as tablets
and work by increasing the flow of blood to the
penis. Prostaglandin, a man-made hormone
that is administered by injection or by inserting a
pellet into the tip of the penis, can also help, as
can vacuum pumps. Before taking any drug, talk
to your doctor to make sure that you take the right
dose for you and to discuss any potential sideeffects or interactions with other medication you
may be taking.
Men with MS may also notice difficulties with
orgasm and ejaculation and may notice reduced
sensation in their penis.
I’m still a young man but, thanks to my
MS, I find I often can’t get an erection
and, the more I worry about it, the more
it happens. It’s really starting to affect
my confidence and my relationship. My
boyfriend is getting fed up and I’m worried
he thinks I don’t fancy him any more.
Should I just give up on my sex life?
Mike, 36
The most important thing is to try to take the
pressure off yourself. Once you’re aware you have a
problem, it come become a vicious circle, as you’ve
discovered. Stress and psychological issues can
also cause erections to flag. If you’re worried that
your boyfriend thinks you don’t fancy him any more,
talk to him and make it clear this isn’t the case.
Don’t shut him out. It’s important to maintain your
physical intimacy, so spend time kissing and
touching each other, giving each other massages,
etc. Experiment with sex toys, which can provide
extra stimulation.
You and your boyfriend might find some sex
therapy helpful too. Why not contact the College
of Sexual and Relationship Therapists and see if
there’s a local counsellor who can help you deal
with this together. For more information about
erectile problems and how to treat them, contact
The Sexual Advice Association (see listings, page 23,
for contact details).
continues
SPEAK OUT
The indirect effects of MS
Some of the symptoms of MS can complicate the
enjoyment of sex. Spasticity – cramps or spasms
in the legs – and muscle weakness can make
sexual activity difficult, for example. You may have
to experiment with new positions. There are also
numerous supports, slings and other pieces of
‘sex furniture’ on the market that are designed to
help support you in a comfortable position during
sexual activity.
If you take medication for spasticity, it may help
to take it just before sexual activity, though it’s a
good idea to discuss changes in your medication
patterns with a doctor first. Massage can help
relax the muscles – and it can also help create
intimacy and closeness.
It’s more difficult physically, but not
impossible. We’ve had to learn to adapt,
just as with everything else.
Brian
Sensory changes can have a big impact on sexual
activity – it can be difficult to get ‘in the mood’
when even the lightest touch causes discomfort,
or if you can’t feel any touch at all. And strange or
painful sensations don’t have to be in the genital
area to make being touched painful, irritating
or uncomfortable.
There are medications that can help with these
sensations, such as amitriptyline, carbamazepine
(Tegretol), gabapentin and phenytoin (Epanutin).
Not all pain will be treatable, but as with other
sexual problems in MS, some experimentation
and good communication between partners
should help too.
Many people with MS experience some changes in
their concentration, thinking or memory. Sometimes
people ‘drift away’ during sex, finding it hard to
sustain interest. This can cause misunderstandings,
so it can help to talk this through with your
partner so that they understand that this lack
of concentration is a genuine symptom of MS.
Together, you might find ways of compensating for
it, such as avoiding potential distractions and creating
a romantic mood and sensual environment.
Some people with MS experience bladder and
bowel problems during intercourse. For some
people, the thought of having an ‘accident’ during
sexual activity – particularly with a new partner –
can kill the mood, and may even cause them to
shy away from intimate physical contact altogether.
If you have problems with urgency or continence,
going to the toilet (or self-catheterising, if you do
this) just before having sex can help. If you take
any medications for bladder problems, taking them
about 30 minutes before sex can minimise bladder
contractions during sex. Finding positions which
don’t put pressure on your bladder can also make
a difference.
Fatigue can have an impact on libido, and you
might feel you do not have the energy or strength
for sexual activity. This can be misinterpreted by
others – sometimes people say that their partners
think they are no longer interested in sex. Being
honest and discussing these feelings can help
prevent misunderstandings from arising.
MS-related fatigue is typically treated with energy
conservation strategies, task prioritisation, balancing
rest and activity and, possibly, medication. If you
are prescribed medications such as Symmetrel
(drug name amantadine) or Provigil (modafinil),
it may help to take them just before sexual activity.
However, taking these medications in the evening
could make it difficult to get to sleep afterwards.
Remember to discuss any changes in medication
patterns with your doctor first.
If there’s a time of day when your energy levels
are higher – such as the morning – you might
prefer to have sex then rather than in the evening.
Planning to rest before and after sex might help
too. Why not experiment with alternative positions
that are less tiring and require less muscle strain?
Mood and emotions
MS can affect your emotions as well as your body,
and people with MS are more likely to experience
depression than the general population. If someone
is feeling depressed, they may lose interest in sex or
they may ‘close off’ from other people around them.
These emotional changes can be a reaction to
the condition and a symptom of MS. It’s important
that these emotional symptoms, like physical
symptoms, are properly recognised and treated.
If it’s affecting your sex life and your relationship,
SPEAK OUT
it can help to talk through your feelings with
your partner.
It’s also important to remember that if you don’t
feel in the mood, then it’s OK to say no. It might
make it easier for them to understand why you
may not be interested in sex if they know that
depression and other mood changes can be a
symptom of MS – and that it’s not about them.
Equally, talking to your partner about how you’re
feeling could bring you closer together – which
might help with intimacy.
Finally, it is important to note that changes in desire,
performance and satisfaction can be a side-effect
of some medications. For example, certain
antidepressants, including fluoxetine (brand name
Prozac) and sertraline (Lustral), can affect sexual
function and cause problems such as decreased
libido, delayed or absent orgasm and ejaculation,
and menstrual irregularities.
If you think any of your medications might be
affecting you sexually, speak to your doctor or
MS nurse about how you can manage this. If you
find it difficult to talk to them about sexual issues,
there are some tips on ‘Talking to health care
professionals about sexual issues’ in the MS
Society booklet Sex, intimacy & relationships
(see listings on page 22 for details of how to get
hold of a copy) that you may find helpful.
I was diagnosed with MS last year. I’m
starting to come to terms with it now but
I’m really worried that it means I’ll never
meet anybody again. Everyone else I
know is fit and healthy and full of energy,
so why would any guy want to go out with
me when I’m fatigued and could have a
relapse any time? And if I do start dating
someone, how and when do I tell him
I have MS?
Gemma, 27
on’t write yourself off. While a diagnosis
of MS is never likely to appear in anyone’s
dating requirements alongside ‘GSOH’, it
should not stop you meeting a partner or having
happy, successful relationships. The majority of
people with MS who want to be in a relationship
are. Remember: you are not your MS. Yes, it’s
part of the package now, but it doesn’t define you,
or stop you having a lot to offer. Just as you say
you’ve started to come to terms with your condition,
so can other people.
Adaptation is the key. You can’t go out clubbing
till 4am any more? Then get involved in other
activities, where you’ll find like-minded people
who share your interests. Don’t be afraid to try
internet dating, which will allow you to get to know
– and vet – people online before you meet.
There are no rules about when you should tell a
new partner that you have MS – although the first
date probably isn’t the time (unless your symptoms
are obvious, and it can’t be avoided). Whatever
you do, don’t lie. It will only set you up for future
problems and make you seem untrustworthy.
Follow your instincts. As you get to know and like
each other, it’s likely that the right opportunity will
present itself naturally, in conversation. When you
are ready to ‘come out’ about your MS, be guided
by your partner’s questions, so you don’t give too
much unnecessary information too soon. Give them
time to get used to the idea.
D
As my MS has progressed, my husband
has started to have to do more and more
for me. He says he doesn’t mind, but I feel
it’s changed our relationship, particularly
in the bedroom. How do I make sure he
continues to see me as a sexy woman?
Sarah, 55
hen one partner takes on the role of ‘carer’,
it can change the dynamics of a relationship
and both partners can find it difficult to adapt
to their new roles. It sounds like you feel that your
husband now sees you as his ‘patient’, rather than
his wife and lover, and, unsurprisingly, this is affecting
your sex life.
It’s important to try to separate the caring side
of your relationship from the romantic one. So,
during the times when your husband is not actively
caring for you, you need to remind each other why
you fell in love and that you’re still sexual beings.
Think about the romantic things you did for each
other early on your relationship – writing little
notes, buying little gifts – and see if you can try
W
continues
SPEAK OUT
to start doing some of these things again. Put on
some music that you both like, suggest having a
soak in the bath together (or bathing each other),
or light some candles. If you’re able, try to make
an effort with your clothes, hair and makeup,
and even invest in some sexy lingerie.
Even if penetrative sex isn’t possible, make sure
you spend time giving each other long, lingering
looks and kissing and stroking each other. Hold
hands while you’re watching TV. Focus on the
things you can do, rather than apologising for
those you can’t.
It’s worth finding out if you are entitled to external
help. A paid carer could do some of the more
personal caring tasks for you, which will take the
pressure off your husband and your relationship.
Contact the MS Helpline to talk about this.
I’ve been married for 20 years and have
just been diagnosed with MS. I’ve heard
that the divorce rate in MS is higher than
average and I’m petrified that my wife will
leave me. How can I make things work?
John, 47
gnore statistics. A study of any group with a
disability or condition would probably reach a similar
conclusion. That said, we can’t give you a cast-iron
guarantee that your MS won’t affect your marriage,
or that your wife will be able to cope in the long
term if your condition deteriorates. But do you know
what? MS or no MS, that just makes you the same
as everybody else in the world. All relationships face
challenges in the long term. Healthy people have
accidents or get sick, successful people lose their
jobs, and even having kids changes the status quo.
If you have a strong, loving relationship, you will
face the challenges together and overcome them.
The key is open, honest communication with
your wife. You both need to be able to discuss
your feelings and your needs and your fears and to
tackle them together. Talk to her now and tell her
about your anxieties. Ask her how she’s feeling.
It might be helpful for you both to contact the MS
Helpline and to find out if there are any other local
couples in a similar situation to you, whom you
could talk to. The MS Society’s Message Boards
or Facebook page could also be helpful. You might
also like to think about contacting a counselling
organisation, such as Relate (see listings, opposite),
for some sessions with a counsellor who can help to
facilitate a discussion in a safe, neutral environment.
Often, ignorance of the future is far more
frightening than the reality. Take life each day
at a time and try not to worry about might happen.
Deal with things together, as they occur.
I
It’s good to talk
MS Helpline
Call 0808 800 8000
(Mon to Fri, 9am to 9pm;
Sat, 10am to 1pm)
Online chat
Talk to other people with MS via the MS Society
website forums at www.mssociety.org.uk/forum
or the Society’s Facebook page at www.facebook.
com/MSSociety
MS Society support groups
The MS Society hosts a wide range of support
groups. Mutual Support, for former and serving
members of the armed forces, GLAMS, for
lesbian, gay, bisexual and trans people, and
Asian MS all have dedicated message boards
at www.mssociety.org.uk/forum. Other groups
include the Shane Project, for people of AfricanCaribbean descent, and Rishon and JEMS, both
for Jewish people. There are also a number of
groups for young people with MS. For contact
details and to find out more, visit the Society
website at www.mssociety.org.uk or call the
Info Team on 020 8438 0799 (Mon to Fri,
9am to 4pm).
Shift.ms
A social network run by its users, where young
MSers meet, share experiences and support
each other.
http://shift.ms
Further reading
Sex, intimacy & relationships (MS Essentials 12)
is a free publication from the MS Society. It has
recently been revised and updated and contains
a wealth of information, tips and practical advice.
Download from www.mssociety.org.uk or call
020 8438 0799 for a copy.
The MS Society Library has a wide range of
books on sex and relationships that can be
borrowed. The library catalogue can be browsed
online at www.mssociety.org.uk/library. Or call
020 8438 0799 or email librarian@mssociety.
org.uk
SPEAK OUT
Useful organisations
Bladder and Bowel Foundation
Helpline 0845 345 0156
www.bladderandbowelfoundation.org
College of Sexual and Relationship Therapists
020 8543 2707
www.cosrt.org.uk
FPA (Family Planning Association)
Helpline 0845 122 8690
(Monday to Friday, 9am to 6pm)
Helpline Northern Ireland 0845 122 8687
(Monday to Friday, 9am to 5pm)
www.fpa.org.uk
Lesbian and Gay Switchboard
Helpline for lesbian, gay, bisexual and trans people
in the UK. Call 0300 330 0630 (daily 10am to
11pm). You can also get email support or send an
instant message via the website at www.llgs.org.uk.
The national switchboard can also put you in touch
with the many local lesbian and gay switchboards
around the country.
Outsiders
A self-help group for people with physical and
social disabilities. Runs the Sex and Disability
Helpline (see below).
4S Leroy House, 435 Essex Road, London N1 3QP
(send an SAE with your enquiry)
020 7354 8291 (Thursday 1pm-5pm,
answer machine at other times)
www.outsiders.org.uk
Relate/Relate NI
Advice, relationship counselling, sex therapy,
support and more.
England and Wales
0300 100 1234
www.relate.org.uk
Northern Ireland
028 9032 3454
www.relateni.org
Relationships Scotland
Provides similar service to Relate/Relate NI.
0845 119 2020
www.relationships-scotland.org.uk
Sex and Disability Helpline
BCM Box Lovely, London WC1N 3XX
(send an SAE with your enquiry)
07074 993 527 (Monday to Friday, 11am-7pm)
sexdis@outsiders.org.uk
SMS 07770 994 985
Sexual Advice Association
Suite 30, Emblem House, London Bridge Hospital,
27 Tooley Street, London SE1 2PR
Helpline 020 7486 7262
www.sda.uk.net
Sexual Health Clinics
Also known as Genitourinary Medicine (GUM)
clinics. They offer free testing and treatment for
sexually transmitted infections. Most clinics also
offer a sexual health counselling service, as well as
providing information booklets and free condoms.
To find out where clinics are based:
Visit the NHS Choices website at www.nhs.uk
or call NHS Direct on 0845 46 47 (England)
Visit www.nidirect.gov.uk/health-and-well-being.htm
(Northern Ireland)
Call NHS24 on 08454 242424
or visit www.nhs24.com (Scotland)
Call NHS Direct Wales on 0845 46 47
or visit www.nhsdirect.wales.nhs.uk (Wales)
What the MS Society
is doing
Research into partners’ experience of MS
Part of an MS Society-funded study on adjustment
to an MS diagnosis, led by Prof Rona Moss-Morris,
explored the partners’ experience in the first years
after diagnosis. From interviewing partners about
their concerns and difficulties it was found that
key themes were: being unsure of what the future
might hold and feeling helpless and out of control.
Partners also felt that other people could not
understand or support them, which led to a feeling
of isolation.
Researching bowel function in MS
Dr Guiseppe Preziosi has been exploring how the
nerves of the bowel are affected by MS. His team
is hoping that the findings of their research will
help to improve bowel management by adapting
existing treatments so that they are more effective
for people with MS.
Researching nocturia in MS
Prof Marcus Drake is investigating a tablet treatment
in people with progressive MS who experience
nocturia – needing to get up in the night to visit
the lavatory. As well as measuring whether night-time
loo trips are curbed, the researchers will also see if
quality of life is improved. Nocturia can be bothersome
– both in terms of sleep and bed sharing. An
effective treatment may make all the difference.
YOUR SOCIETY
That was the MS Week,
that was
in West Lothian that really made the biggest visual
impact for MS Week. Farmer Andrew Jack used
animal-friendly paint to turn the flock bright orange.
MS Week at the beginning of May attracted
considerable media interest and sparked a flurry
of fundraising activities. Janis Winehouse, whose
daughter Amy died last year, appeared on ITV’s
Daybreak programme alongside the MS Society’s
Director of Communication, Information and Education,
Sue Farrington.
Janis (who is interviewed on pages 8 to 11 of this
issue) talked about her experience of living with
MS. She was also featured in the Sun On Sunday
that week. Meanwhile, the Guardian newspaper
included a special MS supplement. ITV News and
ITV News Wales carried stories about MS Week,
as did the Belfast Newsletter. MS activist George
Pepper, founder of the Shift.ms website for young
people with MS, was featured on the BBC News
website and MS Society volunteer Kate Mitchell
appeared on BBC Radio Devon.
The week kicked off with the launch of the
Fightback campaign at www.msfightback.org.uk.
The site showcased three films – the Boxing Gloves
Challenge, the Corset Challenge and the Wellies
Challenge – that were specially commissioned to
illustrate how MS symptoms can feel. The films
ranked as the numbers nine, 11 and 13 most-viewed
videos on YouTube (non-profits) over the week.
MS Week is when our annual Cake Break
fundraising event really kicks off. True to form,
this year saw many a cake baked and pot of
tea brewed and collection box filled.
In Scotland, two ‘flashmobs’ made a splash. In
The Centre, Livingston’s shopping mall, 35 students
of the traditional Korean martial arts emerged from
the crowd to put on a display of their skills. And
in the Bon Accord and St Nicholas Centre in
Aberdeen, shoppers were treated to a performance
by a local Jazzercise group, all clad in orange MS
Society t-shirts. But perhaps it was a flock of sheep
You can read more about MS Week at http://
storify.com/mssocietyuk/ms-week-2012. There
are links there to the three films about MS symptoms
and to videos of the two flashmobs in action.
All MS Life was there
MS Life, the MS Society’s information and lifestyle
event, was held in Manchester over the second
weekend in April . And what a weekend it was!
Nearly 4,000 people braved the rain and came along
to take part in a huge range of activities. There
were live cookery and exercise demonstrations,
informative and interactive workshops, exhibition
stands and a club night. The MS Spa offered
free pampering for visitors and a six-kilometre
‘Wheel & Walk’ through the streets of Manchester
raised funds for the Society. There was even
a chance to sample ‘laughter yoga’.
It was great, being part of a collective
tide of people who live an MS life –
whether as a PWMS or carer/family
member or professionally. It puts an
individual daily succession of little battles
against the disease into perspective and
reminds you that you are surrounded by
allies who are fighting the war against
MS. I am not alone.
Janis Winehouse presented the Society with a
cheque for £20,000 from the Amy Winehouse
Foundation, the charity that was set up in memory
of her daughter. She also recorded a short video
that can be viewed on You Tube at www.youtube.
com/user/mssociety, along with several videos
about MS Life.
YOUR SOCIETY
Having the chance to speak to people
who know about or who have MS was
a very valuable experience. It certainly
helped me to realise that my son can live
a happy and long life with this condition
where before I felt devastated by his
diagnosis. I would like to thank everyone
who organises MS Life for the support
I received.
The research talks were a major draw at MS Life,
bringing people together to hear the latest from
world-class researchers committed to beating MS.
Experts delved into a range of hot topics, from
disease-modifying drugs to stem cells and the
immune system.
The ‘Meet the Experts’ was great, and
I cannot express how wonderful it was to
hear the research talks and to realise that
such wonderful work is being done.
The talk on myelin repair pulled in arguably the
biggest crowd. Professors Robin Franklin and
Charles ffrench-Constant gave an overview of the
latest developments in their work to uncover a
myelin repair therapy.
The MS Society has committed £2.1 million to
the next five years of the world-class project at
the Cambridge Centre for Myelin Repair. The team,
led by Robin, is planning a small clinical trial in a
couple of years. The work could mean that a myelin
repair therapy that could stop or even reverse the
damage caused by MS could be a reality in 10
to 15 years’ time.
Listening to researchers speak about their
work, breakthroughs and challenges,
I never cease to be amazed at the
efforts they go to on our behalf and their
determination to find effective therapies
for us.
David Ford from the MS Register team at Swansea
University explained how people really can change
the face of MS research by joining the MS Register.
Since its launch last year, almost 9,000 people
have joined up.
The MS Register will build a rich picture of what
it’s like to live with MS. The findings will be used to
fuel campaigns for fair policy and improved healthcare
for MS. It could also revolutionise the focus of
research. Sign up now at www.ukmsregister.org
Thank you for organising such a fantastic
event. The MS Society helpers on the
day were great, everyone so friendly and
helpful. I was also really fortunate to get
a grant from the MS Society to help with
accommodation and travel – thank you
so much for this. I don’t know how I would
have managed otherwise.
You can watch the research talks and see all the
films we made, talking to people across the event,
at www.mssociety.org.uk
This event would not have been possible without
the extraordinary support from Visit Manchester
and the amazing generosity of our title sponsors:
MS Society AGM
At the beginning of August, all MS Society
members who are fully paid-up on 16 June will
receive an AGM booklet with information about
how to vote on resolutions and in elections for
trustees and nation council members. Online and
postal voting opens at the beginning of August.
Look out for your AGM booklet and use your vote
to influence the work of MS Society.
continues
YOUR SOCIETY
What are you
talking about?
has made it clear that she doesn’t want to learn
anything about it. Her son has been bunking off
school and is getting into trouble.
The MS Helpline takes over 13,000 enquiries a
year, or more than 1,000 a month. This is a small
selection of some of the calls we took in April.
We gave the caller space and time to talk. She
was very tearful as she explained her situation. We
listened to her distress and empathised with her.
We discussed the possibility of counselling for the
caller and the option of family therapy, which her
GP may be able to help with. We also told her
about www.youngms.org.uk, a website aimed at
children and teenagers, and looked to see if there
is a ‘family focus’ day coming up in her area – a
day organised by a local branch that gives families
a chance to talk about how MS affects all of them.
Emotional support
A lady in her 40s who has recently been diagnosed
with MS telephoned. She explained that she is on
the waiting list for counselling provided from her
GP. She was finding it very difficult to cope and was
very tearful. Her relationship with her family has
started to break down and she is arguing with her
husband most of the time.
We gave the caller space to explore the feelings
that she’s experiencing and offered to support
her while she is waiting for the counselling to start.
Sometimes just being able to voice your fears and
worries can help you feel better. We suggested
she may want to contact Relate to discuss the
situation between herself and her husband. We
recommended ‘Living with the effects of MS’,
an MS Society publication that deals with emotions
and feelings.
Employment
We heard from an employer of someone with MS.
We discussed the support the employee might
need and outlined their rights under the Equality
Act. We offered to send the employer the MS
Society publication ‘Work and MS’ and encouraged
them to keep in touch. We also told them about
www.yourworkhealth.com, as it has sections for
employers and employees.
Local support
Benefits
A woman called to talk about her recent diagnosis
and wanted to know what benefits she may be
entitled to.
We explored how she is feeling about her diagnosis
and explained that benefits are awarded according
to how someone’s MS affects them. A diagnosis is
not an automatic entitlement to benefits. We told
her about our publications ‘Benefits and MS’ and
‘Claiming Disability Living Allowance (DLA)’.
We also directed her to the charity Turn 2 Us,
which provides free and confidential information
given by trained professional advisers on welfare
benefits. Their helpline number is 0808 802 2000
and their web address is www.turn2us.org.uk
Family and relationships
A woman called us very upset because her
partner will not discuss her MS with her. She was
diagnosed five months ago and feels completely
unsupported by her family. She was looking for
emotional support as she feels no one understands
her or her MS. She feels that her family is falling
apart. Her teenage daughter accuses her of being
lazy, has no concept of how MS affects people and
A man called who was feeling very isolated
and felt that no one understands his recently
diagnosed MS. He didn’t know anyone else
with the condition and wondered what sources
of support there are near where he lives.
We gave him details of his local MS Society branch
and therapy centre. He does not have access to
the internet and has trouble writing so we printed
off all the relevant details, including the name
and phone number of the local support officer,
and sent them to him.
The MS Society’s free information booklets,
such as those mentioned here, are available
for download from the Society’s website at
www.mssociety.org.uk or you can obtain copies
by calling the Info Team on 020 8438 0799
(Mon to Fri, 9am to 4pm).
CAMPAIGNS
The disability benefits rollercoaster
For some people, claiming
Employment Support
Allowance has been like
a game of snakes and
ladders – one moment you
are up, the next back to
square one. Anthony Stone
follows the twists and turns
of one man’s story.
Philip Burton was expecting the bad news. Even so,
when the envelope from the Department of Work
and Pensions landed on his doormat it didn’t make
it any easier. In bald, bureaucratic black-and-white
he was informed that his Employment and Support
Allowance (ESA) payments of about £95 a week
would end. There was no advice about what to
do next.
The letter was a result of complicated changes
introduced by the Welfare Reform Act, which recently
became law. From now on, only the most seriously
disabled ESA-claimants (those in the ‘support
group’) and those on lower incomes (recipients
of income-based ESA) can receive more than
52-weeks’ worth of benefit. People in the ‘workrelated activity group’ (WRAG) of ESA claimants
who receive contribution-based ESA will find their
payments stop after a year.
Philip sums up the situation succinctly. ‘I think
the system stinks,’ he says. ‘On the one hand,
they recognise your plight, but on the other, don’t
offer you any help. It is so unjust.’
To look at Philip you would not think there was
anything wrong with him. ‘I am 57 and a widower
these past six years,’ he says, speaking from his
home in a small village outside Lincoln. ‘Although
I have secondary progressive MS with all the
trappings, I go around with a smile on my face.
‘The weather affects me, particularly when it’s
cold. My muscles seize up and it’s difficult to leave
the house. The pain and discomfort mean it’s not
worth the effort. I take the maximum dosage of the
muscle relaxant, baclofen. But the cold weather
counteracts the drug and affects my mobility. At
one point, I only went out the front door just once
in six weeks.’
Things weren’t always this way. Philip was in work
for 33 years before being made redundant from
his job in field sales. That was in September 2008
and he has been unemployed since.
During this time, his condition deteriorated and
turned secondary progressive. He looked for work
at the job centre before his doctor gave him a sick
note and some well-intentioned advice: ‘You know,
Philip, you are not going to get any better.’
In the spring of 2009, Philip went for the medical
to be assessed for ESA. It was carried out by the
private healthcare company, Atos. One of the
questions was: could he raise his hands over his
head? Another asked if he could lift a jug of water
and move a box.
‘Well, I ask you, what does that prove?’ he says.
‘They do not take into account if you’re having a
good or a bad day. I think it is pathetic.’
Philip’s application for work-related activity group
ESA was refused. He describes the accompanying
report as ‘a travesty of justice’.
‘I live alone but I am not without friends and
support. With the help of my local MS Society
branch and the Citizens Advice Bureau, I made
an appeal. I have no idea how you would cope
if you were really on your own.’
Philip’s appeal was successful and the payments
were back-dated. About a year later, he was
asked to another medical. Before this one was
halfway through, the doctor, who had been doing
assessments for 29 years, said he’d seen enough.
Shortly after, Philip received a letter extending
his entitlement to the work-related activity group.
And that’s the way it was until the letter arrived
saying the benefit would stop at the end of
April 2012.
CAMPAIGNS
What is Employment and Support
Allowance (ESA)?
ESA replaced Incapacity Benefit as the benefit
paid to people who are not currently able to work
due to their illness or disability. Most claimants are
required to undergo a medical assessment called
a Work Capability Assessment (WCA), where people
are given points against a set of ‘descriptors’,
according to whether they are able to do functional
tasks. You need to score 15 points to qualify for
the benefit.
If you qualify for ESA, you’ll be put into one of two
groups:
the Support Group, for those considered to be too
ill or disabled to be able to work – they will not be
expected to look for a job.
the Work-Related Activity Group (WRAG), for those
‘For years I have had to jump through hoops,
and those hoops keep getting smaller and smaller.
I accept, and my grown-up son and daughter also,
that I will never work again. That is a fact and yet
the government is trying to hammer me because
they have cut funding.’
The decision was deeply wounding. For over three
decades Philip paid tax and National Insurance
contributions, yet the decision made him feel
like he was not entitled: ‘I know I am faring better
than many people with MS, but I still think I have
a valid case.’
At an age when Philip should be looking forward
with hope to his golden years he was suddenly facing
a precarious financial future. He has recently been
diagnosed with anxiety and depression.
But Philip was not giving up without a fight. He
now applied for a reassessment to see if he would
qualify for the support group, which sets a higher
bar, and is designed for those who are unlikely to
be able to return to work at all.
At last, there was some good news. One week
after being told his ESA payments would stop,
Philip received another letter. ‘It said I have been
moved from the work-related activity group to the
support group, back-dated two weeks. It is what
I was looking for – good news.’
So Philip’s story has a happy ending – for now.
Just when feels he is getting to grips with these
latest ‘hoops’, another change is on the horizon.
Next year, he says, he can look forward to the
introduction of Universal Credits and the introduction
of Personal Independence Payments, which
replace DLA. He can’t wait.
who, with support, may be able to prepare to
return to work in the future – they will be expected
to undertake activities related to finding a job.
What is contribution-based ESA?
Contribution-based ESA is paid when a person has
paid sufficient National Insurance contributions
during their working life.
What is income-based ESA?
Eligibility for income-based ESA is determined by
the level of income, capital and savings a person
has and their eligibility for other benefits. Usually,
people on no or low incomes and with capital of
less than £16,000 will qualify.
What is the ESA time-limit?
If you receive contribution-based ESA and are
in the work-related activity group (WRAG), your
contribution-based ESA payments will stop after
52 weeks. You might be able to claim another
type of ESA instead. But, depending on your
circumstances, this payment might be less than
you get at the moment. If you are in the ESA
support group, or you get only income-related ESA,
this change does not affect you.
This affects me – what can I do?
If you have already had a letter from the DWP
about this, you should contact them using the
details they have supplied. If not, then you don’t
need to do anything immediately, but you may
choose to do so.
continues
CAMPAIGNS
There are several possible outcomes if your ESA is
time-limited:
Move to the support group
If you feel you should be in the support group
(if your MS affects you more now than when you
were assessed, or if you think you were put in the
wrong group to start with), you can ask to be
re-assessed by contacting the office that normally
deals with your benefit. However, a re-assessment
might conclude you are not eligible for ESA at all,
and this could affect current payments as well as
future ESA claims. Contact a local advice agency
for support in making this decision.
Move to income-related ESA
If you currently get only contribution-based ESA,
you can be assessed for income-related ESA
instead. How much you get depends on your
financial circumstances – a ‘means test’. This
might happen automatically or you can ask for it.
Continue with income-related ESA
If you currently get a combination of contributionbased and income-related ESA, you can continue
to get the income-related ESA payments. These
should be increased once your contributory ESA
is terminated.
If your MS gets worse after the
time-limit
Even if your contribution-based ESA is stopped
because of time limiting, if your health gets worse
later on and you begin to qualify for the support
group, you can re-claim ESA. However, this can
only happen if you have continued to have (or
can be treated as having) limited capability for
work in the intervening time. You would usually
need to request a re-assessment to be considered
for the Support Group.
To find your local Citizens Advice Bureau: visit
www.citizensadvice.org.uk (England and Wales),
www.citizensadvice.co.uk (Northern Ireland)
or www.cas.org.uk, or call 08444 111 444
(England), 0131 550 1000 (Scotland) or
08444 77 20 20 (Wales) or look in your local
phone book.
What the MS Society
is doing
We oppose the time-limit
We estimate it will affect around 8,000 people
with MS, and we are extremely concerned about
the impact that this measure will have on them.
Find out more about our campaign and get
involved by visiting www.mssociety.org.uk/
benefitscampaign. If you’re been affected, please
tell us your story by visiting www.surveymonkey.
com/s/msstories or calling our Policy and Campaigns
team on 020 8438 0700.
Helping people return to work
We have funded research to explore ways to
support people with MS to return to work. The
study aims to build on previous research that
developed a service to help people with MS remain
in work. About 20 to 30 per cent of people with
MS are working – but many more could be if
they had more support. Dr Playford’s team have
developed a manual to help employers to support
their employees make adjustments to remain in
work, as well as helping people return to work after
a considerable absence.
MS Society publications
Employment and Support Allowance (ESA)
(MS Essentials 29) and the Working yet worried
toolkit are free booklets from the MS Society.
Download from www.mssociety.org.uk or call
020 8438 0799 for a copy.
Information talks and events
In the coming months, the MS Society will be
holding information events and talks on ESA
around the country. Check the ‘Near me’ section
at www.mssociety.org.uk or call 020 8438 0799
for details.
Free legal advice
If you have a problem with your benefits and live in
England and Wales, contact the MS Legal Officer
at the Disability Law Service for free legal advice.
Call 020 7791 9826, email msadvice@dls.org.uk
or visit www.dls.org.uk

MS Matters_103_magazine

Transcription

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