The Jooly's Joint community speaks directly to
members of parliament
UK MS Society
celebrates its 50th Anniversary in 2003.
To mark this event, the society held a small
dinner at the Marriott hotel in Westminster, London on the evening of Wednesday
26 March for a few of the key influencers in the world of MS, including 3 MPs
who are officers of the All Party Parliamentary Group for MS (David Hinchcliffe MP,
MP, Paul Burstow
MP), the Director-General (Mike O'Donovan, whose son has MS) and the Chair
of the MS Society (Sarah Phillips who has MS), the Society's medical advisor
(Alan Thompson) and, of course, a number of people with MS (Val Butler, Elaine
Moore and Julie Howell).
The evening took the form of a drinks reception
followed by dinner and lively discussion about the state of services to people
with MS in the UK.
Julie Howell of Jooly's Joint was invited to give
a short speech during the dinner from the perspective of someone living with
What follows is a transcript of that speech,
which comprises comments from several members of our JJUK discussion group. Julie extends a big thank you to
everyone who contributed to the speech and to the MS Society for inviting her
to attend the dinner.
My name is Julie. I'm 32, I work
full-time and live in London. I was diagnosed with MS in 1991, when I was 20.
I've been asked to speak to you
because I have the privilege and the pleasure of facilitating an online
community (called Jooly's Joint) for around 10,000 people with MS from around
the world. The MS Society has asked me to pass on to you a few of the thoughts
and feelings of some of us and I'm very pleased to spend a few minutes doing so
Our community operates over the
internet, using email mostly. One of the things we encourage members of our
community to do is include an inspirational quote at the end of their messages.
For example, Julia from York's
quote reads 'make today the best you've ever had'.
And Joyce from the USA's reads
'look for the joy in every day'.
One my favourite sign off quotes
is the one used by Dave from Swansea. It may not be the most positive
sentiment, but when you consider the remark comes from someone with MS, living
in the UK, trying to get on with life, well, it certainly strikes a chord. And
"I thought I saw a light at the end of the tunnel but it
was some bastard with a torch bringing more troubles"..!
While there are fantastic health
and social care professionals working across the UK to help people with MS,
people like me, to get on with our lives, experiences have been mixed. I'm one
of those people who firmly believes that life can still be fantastic,
rewarding, fulfilling, even with a condition like MS to contend with. Indeed,
the Jooly's Joint community is all about celebrating who we are and our
achievements, great and small, from skydiving or becoming mayor, to having our
writings published or finishing a degree course.
The Jooly's Joint community is,
on the whole, a very happy, positive and welcoming place, because it's
populated on the whole by happy, positive and welcoming people. But for many of
us, myself included, the diagnostic process which is the beginning of our
individual journeys to coping, handling and living with MS can be the beginning
of an entire chain of events that leave us feeling bewildered, ignored and
The words I'm about to read to
you aren't mine. They belong to members of the Jooly's Joint community, people
with MS, who are glad of this opportunity to tell you how services to people
like us might be improved.
Getting a diagnosis.
Chris from England: "What I
find most stressful about the whole MS thing is lack of awareness of the
condition amongst the medical profession. When I think of the years during
which I repeatedly went to see doctors only to be labelled a hypochondriac when
all the time I knew something was wrong with me, it me makes me so cross. It
would be really helpful if professionals such as GPs and ophthalmologists were
more aware of the symptoms of MS. This could make the process of diagnosis
swifter. It's a lot easier coping with symptoms when you know what is causing
them. An expert doctor course might be a good idea."
A common cause of additional
stress at time of diagnosis is lack of information.
Lisa from Derby said "I
couldn't believe that an enormous hospital like the one I attend hadn't even
got so much as a leaflet in their neurology department explaining more about
MS. Even better would have been the name of an allocated support worker or
nurse with a phone number. I've still yet to even see an MS nurse or to receive
an appointment for the MS clinic and it's getting on for 2 years since my first
symptoms appeared. I will never forget the feeling of bleak isolation that
overwhelmed me as I walked out of the hospital having been told I'd got MS. I
was told that I have MS and that was it."
Dave from Swansea: "When I
was diagnosed I received no information. The neuro said I had MS but was unable
to give me any information about help or advice."
Lynne from Langley Mill:
"The lack of information is dreadful. When I had my MRI scans, a bloke in
a white coat came and said "You have a major swelling on your brain stem
and you can go home as soon as you want". I was then packed off with an
appointment to return in 2 months time. Not knowing what it meant made life so
stressful. I realise now that it was probably that stress that made me so ill
for so long."
Waiting lists continue to be a
cause of great stress.
Lisa from Derby: "Another
source of stress for me has been waiting lists, and the enormous amount of time
it takes between having a test and getting the results. I had to wait nearly 3
months for the results of my MRI scan. I found this extremely stressful."
On-going practical support was
cited by some to be severely lacking."
Caroline from Oxford: "It
would be so reassuring if all people with MS could have a social worker
assigned to them. This would help create a central register of relevant facts
and needs. Best of all, it would avoid cases like mine. I lived with MS for 12
years with no idea of the help available."
Tony from England adds:
"Information about physiotherapy and exercise would be
Jill from Medway says: "The
needs of people who've had MS for a long time and cannot benefit from the
disease modifying drugs are easily overlooked. We need support to keep fit (eg
accessible swimming pools and gyms staffed with helpers), and we need support
to help us feel good when we're unable to exercise (access to aromatherapy,
massage and reflexology)."
Lastly, Mark from Crewe said:
"I'm under 40, have primary progressive MS, and am very concerned about
the lack of appropriate respite care for younger people like me."
On-going emotional support also
seems to be scarcely available.
Judy from Huddersfield: "MS
has a profound effect on the emotional health of a relationship. No-one has
ever asked me or my husband as a couple how MS has affected our relationship.
It's incredible how many people with MS that I know tell of failing
relationships. Who is there for them?"
And the ability to get on with
our daily lives is sometimes hampered by lack of support and
Di from England said: "I
think employers should be made more aware of MS because there is still a stigma
attached to the illness."
And Di also asks: "Can car
insurance companies be made more aware that MS is not life threatening?"
Alan from Glenmavis: "There
is a need for increased awareness of the effect that stressful events can have
on people with MS. I went into a major relapse last year when I became too ill
to continue working. I'm convinced the stress of filling out forms, talking to
bureaucrats, dealing with having an incurable illness, trying to reassure and
inform friends and family, all contrived to extend the length of the relapse
and severity of the symptoms. Oh aye, and the anger felt on being told the
Governemnt couldn't afford the only bloody drug that might help me."
Judy from Huddersfiled provides
the final word: "Please ask the MPs and the medical profession to STOP
CALLING US 'PATIENTS'! We would never dream of calling our MP 'OUR ELECTED
This is all pretty basic stuff.
Timely information, access to professionals, therapy and respite when we need
them. These are all things that can enable people with MS to get on with our
lives, to work, to look after our families, to contribute to society. We don't
want to be wrapped in cotton wool, we don't want to rely on state benefits
rather than work. We just want access to information, services and support that
will give us the confidence to get on with our lives and live our dreams. Thank