Arthritis Today Spring 2011

Transcription

Arthritis Today
Spring 2011 | No 152
Back pain
How talking therapies
can help
Patient power
The rise of the user
group
The magazine reporting research, treatment and education
Visionary
treatment
How we’re preventing
blindness in children
with arthritis
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Feature highlights
Visionary
treatment
Patient
power
Preventing
blindness in
children with JIA
P10
The rise of the
user group
P13
Back pain
Best foot
How talking
forward
therapies can help Designing better
P18
shoes for arthritis
sufferers
P21
NUTRITION FOR A HEALTHY LIFESPAN
Welcome to the spring edition of
Arthritis Today. As our readers will be
aware – and will have read about in
numerous stories in the magazine
over the years – arthritis accounts for
one in four of all visits made to the
family doctor. Yet despite this
staggering statistic, many GPs simply
don’t offer people with arthritis
adequate care or advice. Our new
policy and affairs unit plans to start
making a noise about this woeful state
of affairs. Read more on page 4.
Uveitis, or inflammation of the eye, is a
common symptom of certain types of
juvenile idiopathic arthritis, which, if
left untreated, can lead to blindness.
On page 10 we report on one young
girl’s moving story, and how our new
clinical trial hopes to treat this
worrying condition more effectively.
Ex-soldier Barry Bell went through hell
after suffering from painful disc
prolapses in his back that led to his
retirement at the age of 37.
A particular type of cognitive
behavioural talking therapy helped
him regain a good quality of life, and
now we’re running a pilot study of this
therapy which we hope will bring
relief to many more sufferers of
intractable back pain. Find out more
on page 13. Patients used to be the
passive recipients of care. Not any
more. Patient power is on the rise, and
here at Arthritis Research UK we’re
keen to ensure that patients have their
say when it comes to the type of
research we should be funding.
www.arthritisresearchuk.org
Research
into practice
Questions
and answers
Focusing on our
research in
Edinburgh
P23
Our resident
doctor answers
your queries
P26
Contents
Welcome
180 Glucosamine tablets
1,000mg
Ouch!
The magazine reporting research, treatment and education. Published by Arthritis Research UK.
Our news and chief executive’s column 4
Read about our user group, and that
of our primary care centre at Keele,
and how they’ve developed into an
essential part of the decision-making
process, on page 13. Stuart Ralston,
our professor of rheumatology at
Edinburgh University, is that rare
beast – a top clinician who is also a
leading academic and researcher into
bone diseases. On page 23 you can
read about his latest research into
osteoporosis and Paget’s disease, and
how by volunteering to take part in
research his patients then benefit
directly from the results.
News about the latest research
7
How to prevent blindness in
children with arthritis
10
Power to the patient – the role of
the user group
13
Let’s talk about back pain
18
If the shoe fits…
our footwear design challenge
21
Research into practice in Edinburgh
23
Questions and answers
26
New research awarded
28
The hints box 29
Enjoy your read.
Meet the expert
30
Jane Tadman
Fundraising
32
Editor, Arthritis Today
Arthritis Research UK is a medical research charity
entirely supported by voluntary contributions and
legacies. For further information about the charity
and its work contact us at:
Arthritis Research UK
Copeman House, St Mary’s Court, St Mary’s Gate
Chesterfield, Derbyshire S41 7TD
Tel: 0300 790 0400, Fax: 0300 790 0401
[email protected]
Registered Charity England and Wales No. 207711,
Scotland No. SC041156.
Editor: Jane Tadman
Correspondence to the editor should be sent to
the address above or to
[email protected]
Designer: Jonathan Ogilvie
Advertising sales: Steven Smith
Redactive Media Group, 17 Britton Street
London EC1M 5TP
Printed by The Website, Leeds.
None of the products and services advertised
in Arthritis Today are in any way endorsed by
Arthritis Research UK.
Front cover: Clare Smith, who has arthritis, with her
dog Buster.
Arthritis Today 03
News
News
Policy & communications update
Taking steps to
improve health
policy
Arthritis has for too long been in the
shadows when it comes to NHS and
government decision-making on
health. Even other long-term
conditions, such as diabetes and
chronic lung disease, seem to get more
attention. Yet 10 million people have
their quality of life affected by arthritis.
To redress the balance, Arthritis
Research UK has recently established a
policy and public affairs unit. Its aim is
to make the voice of people with
arthritis heard by managers of the
health system throughout the country.
Why do GPs receive so little training on
musculoskeletal problems, when so
many of their patients come to see
them with pain in their joints or
muscles? The team will be lobbying to
improve medical and clinical education
about arthritis.
What effects will the Health and Social
Care Bill now going through Parliament
have on people’s access to services like
physiotherapy, podiatry and
occupational therapy? We’ll be
conducting research to look at variation
in the way services are commissioned
and to make recommendations on best
practice.
Charity’s role attracts
new funding for
childhood bone
disease
Four centres in Sheffield, London,
Birmingham and Bristol have been
awarded £18m from the Department of
Health over five years to become
designated centres for severe complex
and atypical osteogenesis imperfecta (OI),
starting this month.
Professor Nick Bishop, professor of
paediatric bone disease at Sheffield
Children’s Hospital, a former Arthritis
Research UK senior fellow and leading
04 Arthritis Today
How can we ensure that doctors and
patients have good access to high
quality information about the latest
developments in arthritis care? We’ll be
working with the government to
explore how best to get this material
into the hands of professionals and
members of the public and make it easy
to use.
These are just some examples of the
work we’re planning for the coming
months and years. We’d like to hear
from you too. What are the main
problems you face in the way your care
is organised? What changes would you
like to see in the system to improve
your quality of life? Drop us a line or
email us at the address below.
No changes can be expected overnight.
The NHS is a super-tanker that takes a
long while to turn. But it’s about time
that arthritis received the priority it
deserves.
To contact the policy and public affairs
team email campaigning@
arthritisresearchuk.org
Kirsty Walker,
director
of policy and
comunications
expert in brittle bone disease in children,
said that the years of financial support
from Arthritis Research UK was a major
factor in gaining the funding.
“The bid needed to have evidence that
interventions such as bisphosphonates
were successful and the Arthritis Research
UK-funded study of risedronate in children
with OI that we undertook was a key study
for us to cite,” he said.
“This should be regarded as a significant
success for Arthritis Research UK in terms
of substantially impacting on better
healthcare provision for children with
severe bone disease.”
The other three designated centres are
Great Ormond Street Hospital, Bristol
Royal Hospital for Children and
Birmingham Children’s Hospital.
Fighting
talk
from Dr Liam O’Toole,
chief executive,
Readers of Arthritis Today will be all
too aware of the lack of status
accorded to arthritis and
musculoskeletal conditions by both
the government and the NHS.
Although these conditions account
for one in four visits to the GP, our
research has shown that many family
doctors are insufficiently trained to
treat even very common musculoskeletal conditions.
Our new policy and public affairs unit
has been set up with the aim of
lobbying the relevant bodies to
improve the medical and clinical
education of medics about arthritis.
The team has also already responded
to a number of government
consultations on the planned health
service changes, with the aim of
ensuring that the 10 million people
with arthritis get a better deal than
they do currently. We will keep you
informed of our progress in future
editions of the magazine.
You can read further details on these
activities opposite.
There’s just room to wish our 64
runners taking part in this year’s
London Marathon the very best of
luck. We raised more than £75,000 for
this event last year and it’s a big date
in the fundraising calendar for our
charity.
Researchers identify
barriers to integrated
rheumatoid arthritis care
A research team at King’s College London
have identified a number of barriers to
integrated care of patients with
rheumatoid arthritis.
The researchers, who were funded by
Arthritis Research UK, set out to obtain the
views of patients and healthcare providers
in inner-city settings to see what they
perceived to be the main barriers.
They questioned 79 people, including
patients, carers, medical and nursing
outpatient staff and GPs, via focus groups
and face-to-face interviews between 2005
and 2008.
Analysis of their responses led the
researchers to identify three key barriers
that stood in the way of well-integrated
care.
Firstly, respondents highlighted the
importance of early referral to specialists.
Many complained of delays in specialist
referral and many GPs said they were
influenced by their perceived role as
“gate-keepers” to secondary care.
There are also limitations of ongoing care
for patients diagnosed with rheumatoid
arthritis, for instance the lack of time that
Professor
David Scott
consultants are
able to spend with
individual patients.
Many patients said
that they had
insufficient time
with their
rheumatologist, but welcomed
interactions with specialist rheumatology
nurses.
Finally, respondents reported that issues
such as pressure on overbooked clinics
affected the management of acute flares.
Patients highlighted the importance of
being able to access immediate help and
support during times of flare or
emotional stress, but many specialists
admitted that increased pressure on
appointments led to long waiting times.
Writing in the journal BMC Musculoskeletal
Disorders, Professor David Scott and
colleagues wrote: “This timely study of
the multi-perspective views of recipients
and providers of care was conducted
during the time of publications of many
important reports in the United Kingdom
that highlighted key components in the
provision of high-quality care for adults
with rheumatoid arthritis.
“To achieve seamless care across primary
and secondary care requires
organisational changes, greater personal
and professional collaboration and GP
education about rheumatoid arthritis.”
A spokeswoman for Arthritis Research UK
welcomed Professor Scott’s findings.
“More clearly needs to be done, including
better ways of treating pain and
depression, and the long-term goal is still
to ensure that all rheumatoid arthritis
patients receive the very best care and
treatment, irrespective of where they live,”
she added.
Majority of knee replacements
‘still working after 20 years’
A new study shows that the majority of
patients who undergo knee
replacement surgery still benefit from
improved mobility and reduced pain
after 20 years.
John Meding, at the Centre for Hip and
Knee Surgery in Indiana, said: “Elderly
people are using their surgically
replaced knees for fairly active
lifestyles many years after surgery. If a
patient actually lives that long, a
well-functioning total knee replacement may allow them to maintain a
remarkable functional capacity and
activity level not just for five or 10
years, but for 20 years and beyond.”
Research supports hip revision
surgery in healthy over-80s
Hip revision surgery appears to be
beneficial in elderly patients whose hip
prosthesis has started to fail, new research
shows.
While hip replacement surgery can provide
much-needed pain relief and improve
mobility for patients with severe
osteoarthritis, some patients find that the
function of their implant starts to decline
after a number of years.
In addition, ageing joint implants may
become loose, suffer from wear or develop
an infection.
Scientists at Geneva University Hospital in
Switzerland enrolled two groups of patients
to see whether hip revision surgery was less
effective in older people.
They analysed 84 patients over the age of
80 and a further 241 under-80s, all of whom
underwent revision surgery between 1996
and 2008.
Researchers found that over-80s typically
experienced a significant improvement in
symptoms and reported satisfaction with
the outcome of their revision surgery.
More than 84 per cent of older patients
reported feeling no or only mild pain,
compared to 79.8 per cent of younger
patients.
However, the study authors observed that
medical complications were more
common in older patients than younger
ones, as were dislocations in the first year
and post-operative fractures.
Researcher Dr Anne Lubbeke told the
American Academy of Orthopaedic
Surgeons’ annual meeting: “We encourage
patients older than 80 to have revision
surgery in terms of pain relief and function.
But we also tell them
they need very good
medical preparation
before the
operation.”
A spokesperson for
welcomed the
findings. “The
challenge for
researchers is clearly
to further refine
revision techniques,
but also to produce
longer-lasting hip
replacements so that
revision surgery
becomes
redundant,” she
added.
Arthritis Today 05
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Research news
Rheumatoid arthritis
researchers move closer
to “Holy Grail”
Researchers in Leeds are aiming to move
a step closer to the “Holy Grail” of patient
care by developing a way of accurately
predicting which people with early signs
of joint pain and inflammation will
develop rheumatoid arthritis.
Identifying the people most at risk of
developing severe rheumatoid arthritis is
vital as it means that they can then be
treated quickly and early in the course of
their disease. Meanwhile, those people
whose symptoms will remain mild or
even go into remission will not needlessly
be put on strong drugs.
Currently doctors have limited tools for
predicting which of their patients with
joint pain will go on to develop
rheumatoid arthritis, and those who will
not.
A team at the Leeds Institute of Molecular
Medicine, led by Arthritis Research UK
professor of rheumatology Paul Emery,
have been at the forefront of research
aiming to develop the concept of
“personalised medicine” for the past
decade. Targeting individual patients
with the treatment that is best for them is
regarded as the “Holy Grail” of medical
research.
Now Dr Jane Freeston, NIHR Clinical
lecturer in rheumatology, based at the
rheumatology department at Chapel
Allerton Hospital, has been awarded a
clinician scientist fellowship of more than
£300,000 from Arthritis Research UK to
develop this work further.
Dr Jane
Freeston
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Professor Paul Emery
She plans to identify very small
amounts of joint and tendon disease in
a group of patients with the earliest
signs of inflammatory arthritis, by
combining cutting edge high
resolution magnetic resonance
imaging techniques and ACPA
antibody testing (which can indicate
the presence of rheumatoid arthritis).
She hopes her findings can ultimately
be translated into a useful diagnostic
and prognostic ultrasound tool that
can be widely used by clinicians to
make treatment more targeted and
appropriate for the patient.
“Early aggressive treatment can stop
this damage so we need to identify
and reduce inflammation as early as
possible, but currently we can’t easily
predict which patients with early signs
of inflammation will go on to develop
rheumatoid arthritis,” explained Dr
Freeston.
“With the potential consequences of
over-treating patients at a stage where
many patients are often unwilling to
accept aggressive treatments, doctors
are increasingly looking for accurate
tools to predict how the disease will
progress so treatment can be tailored
to the needs of individual patients.
That is what we hope to achieve.”
Researchers to find best
way of treating arm pain
More than 500 people suffering from
lower arm pain are to take part in a new
UK-wide clinical trial that aims to find out
the best treatment for this troubling
condition.
Around five million working days are lost
each year due to work-related arm pain,
such as tennis elbow, tendonitis and
repetitive strain injury.
Now a team at Aberdeen University have
been awarded £640,000 from Arthritis
Research UK to investigate whether
patients do best when offered advice to
keep active, or whether it’s better for
them to rest, while waiting for
physiotherapy to start.
The trial will also test whether “fast-track”
physiotherapy results in a long-term
reduction in their lower arm pain
compared to physiotherapy given at the
time usually provided by the NHS – rarely
quicker than six to eight weeks.
“Nearly half of all patients that go to their
GP with arm pain had pain in their lower
arm, and nearly half of these still reported
having pain 12 months later,” explained
principal investigator Dr Gareth Jones,
senior lecturer in epidemiology at the
University of Aberdeen’s School of
Medicine and Dentistry.
“Although lower arm pain is very
common, and costly to treat, we don’t
know the best way to manage symptoms.
Patients are often referred to have
physiotherapy, advised to rest and to
avoid activities that are thought to be
harmful. In fact this approach might be
counter-productive and it may be that
people with these conditions need to
remain active, as we now know is the case
with back pain.
“We want to make sure patients are given
the best advice to reduce long-term pain
and disability and which may lead to
faster recovery.”
The trial is due to
start shortly, and
patients in
Aberdeen, Bath,
Cambridge,
Southampton and
Brighton, between
the ages of 18 and
70, will be recruited
from June.
Dr Gareth
Jones
Arthritis Today 07
Research news
Bristol research aims to motivate people
with arthritis to carry on exercising
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A Bristol researcher is aiming to make it
easier for people with knee osteoarthritis
to get into the habit of exercising regularly
in order to keep their pain at bay.
Dr Nicola Walsh, senior lecturer at the
University of the West of England, has
been awarded a career development
fellowship of £345,000 from Arthritis
Research UK to develop more effective
and cost-effective ways of treating painful
osteoarthritis of the knee, which affects
around six million people in the UK.
Dr Walsh, an exercise and pain
management specialist, hopes to make
sure people with knee pain not only start
to exercise but, more importantly, have
the motivation and encouragement to
keep on exercising as a way of managing
their pain.
She aims to set up and assess a series of
pilot exercise classes in local community
centres to find out if they’re do-able and if
people with knee osteoarthritis would
actually take part.
“Medical guidelines have shown that
exercise is an effective way of successfully
managing pain and disability; however,
patients need to know how to exercise,
what is safe and also want a supportive,
informative environment to work in,”
Daytime Tel
Address
Postcode
Orthopaedic experts at The University of
Nottingham are hoping to reduce the rate
of infections that often occur in the
pinning of broken bones by developing a
special collar to counter dangerous
microbes.
Using technology developed by Dr Roger
Bayston in the School of Clinical Sciences,
PhD student and nursing specialist Jennie
Walker has been awarded an allied health
professional training fellowship of almost
£160,000 from Arthritis Research UK to
devise an anti-microbial collar to prevent
bacterial infections associated with
broken bones.
Pins used to mend broken bones can
often lead to infection and up to 40 per
explained Dr Walsh, who is based in the
Faculty of Health and Life Sciences.
“At present there are limited facilities that
support exercise in older people, so that
most people with knee pain can only
expect to receive a short course of
exercise in the physiotherapy
department before being discharged to
manage their problem independently. As
such, they’re uncertain as to how and
where to continue exercising safely, so
eventually their motivation lessens and
they lose the benefits of exercise.”
As part of her five-year fellowship,
Dr Walsh will interview patients, clinicians
and healthcare managers to find out
what people want, and why they’re not
currently getting it. Previous research has
already revealed one hurdle: many
people value being taught how to
exercise by physiotherapists, but
don’t always feel safe
exercising in classes run
by support workers.
However, it’s too
expensive for a healthcare
professional such as a
qualified physiotherapist
to regularly lead exercise classes.
cent of patients being treated in this way
develop infections, which can, in the worst
cases, lead to osteomylitis (bone infection)
and septicaemia.
Dr Bayston’s anti-microbial catheter, used in
the treatment of hydrocephalus (water on
the brain) and severe kidney failure, has
already benefitted almost half a million
patients worldwide, reducing infection rates
by between 60 to 85 per cent.
Dr Bayston, who is based in the Division of
Orthopaedic and Accident Surgery and
specialises in research into surgical
infections, said: “We plan to use this same
technology to design and test an antibioticimpregnated collar which can be fitted to
the skin surface for use in pinning broken
bones.”
Serious fractures are often treated by
inserting metal pins through the skin into
the bone and stabilised by a metal frame.
He added: “The idea is to develop a cheap
and user-friendly device impregnated with a
Dr Nicola Walsh
Dr Walsh is keen
that her research
leads to real
practical benefits for
patients. “Too many
treatments which
research has shown
to work haven’t
become standard clinical practice
because they’re too difficult to apply in
the real world,” she added. “Consequently,
treatment doesn’t improve, money and
effort are wasted, and people don’t have
the best treatment. That’s what we want
to do
something
about.”
substance that will kill bacteria before it
can work its way down the pin and get
into the wound, and can be taken off the
patient, washed and replaced.”
Ms Walker will carry out a pilot study to
determine its usefulness in patients at the
Queens Medical Centre, with Dr Bayston
and Professor Brigitte Scammell,
consultant orthopaedic surgeon.
She said: “We need to carry out further
research to perfect the collar. As the
anti-microbial agents that we will use are
already in clinical use we don’t expect to
encounter any problem with side-effects.”
The researchers also want to find out
which bacteria are most commonly
associated with pin site infections and
whether there are some patient groups
who are at particularly high risk of
infection. They believe the device could
also reduce NHS costs by avoiding the
complications associated with infections.
Please tick if you would prefer NOT to receive product/service information.
Post to: Willowbrook Recliners FREEPOST SWC2458, Droitwich WR9 0BR
Arthritis Today 09
Inflammation of the eye
attacked her eyes, pressure built up,
leading to real fears she might go blind.
Visionary treatment
Youngsters with arthritis are at risk of losing their eyesight.
Jane Tadman talks to the mother of a little girl whose eyesight was
saved by anti-TNF therapy, and reports on a new clinical trial which
could make this drug more widely available to younger children.
For the parents of young children with
severe arthritis, knowing that they face
a lifetime of battling against pain and
potential disability is hard to come to
terms with.
Vicki Smith, the mother of a young girl
diagnosed with arthritis at the age of
just 18 months, had an even greater
fear – that her daughter Clare would go
blind.
If it’s little known among the general
public that children and babies can
develop arthritis, it’s even more of a
surprise for many people to learn that
these youngsters are also at real risk of
losing their eyesight.
Uveitis, or inflammation of the eye, is a
common symptom of certain types of
juvenile idiopathic arthritis (JIA). Up to
30 per cent of children with JIA are at
risk of uveitis, and in one third of these
children the disease is of sufficient
severity to cause visual loss, cataracts,
increased pressure in the eye and
blindness.
A few months after Clare, now nine, was
born, her crying and screaming, high
temperatures, rashes, and unwillingness
and inability to stand up or walk made
her mother suspicious that something
was seriously wrong. By the age of
18 months doctors at the Bristol Royal
Hospital for Children had diagnosed
Clare with JIA and started her on
medication that helped but never
properly controlled her condition.
Three or four times a year the little girl
would suffer terrible flare-ups that
Clare Smith and Buster the Labrador
“When they told me that I was in a hell
of a state,” says Vicki. “I was more
worried about her losing her sight than
anything else.”
“Things are so much
better”
Clare is pictured doing the Noddy
Walk for the Portishead branch of
Arthritis Research UK at the age of
four. “More people should know
about what it’s like to have a child
with arthritis and how it affects the
whole family,” says Vicki.
“Until Clare was diagnosed with it I
had no idea that children could get
arthritis, and a lot of people still
think that. When people dismiss
arthritis as not serious it makes me
angry. People trivialise arthritis but
it’s not trivial. They haven’t been in
the house when Clare has been
screaming in pain in the night.
Arthritis emotionally cripples you.”
resulted in regular hospital stays. Four
or five of her joints would be swollen
and painful, and she needed numerous
steroid injections to dampen down the
inflammation ravaging her little body.
Through it all, her family – mum Vicki,
dad Tony and 13-year-old sister Alex –
tried to carry on with as normal a life as
possible, with Clare developing into a
high-achieving youngster, despite her
regular absences from school because
of her illness.
For the parents of young children with
severe arthritis, knowing that they face
a lifetime of battling against pain and
potential disability is hard to come to
terms with.
Vicki Smith, the mother of a young girl
diagnosed with arthritis at the age of
just 18 months, had an even greater
fear–that her daughter Clare would go
blind.
“It was heartbreaking...”
“If you could have seen Clare three or
four years ago, it was heartbreaking.
She would be walking to school
because she didn’t like the buggy,
dragging her leg, and I would be there
trying not to cry,” remembers Vicki.
If it’s little known among the general
public that children and babies can
develop arthritis, it’s even more of a
surprise for many people to learn that
these youngsters are also at real risk of
losing their eyesight.
10 Arthritis Today
Worse was to follow. Clare developed
uveitis, which required eye drops every
two hours. Doctors gave her infusions
of the anti-TNF therapy infliximab, but
this didn’t help. As the inflammation
But following two successful operations
to drain the eyes in order to relieve the
pressure behind her eyes, doctors
managed to get Clare onto another
anti-TNF drug, adalimumab. This drug is
not currently licensed for children of
Clare’s age, and her rheumatologist
Dr Athimalaipet Ramanan had to seek
permission to use it off licence, on what
is known as a named patient basis from
the local primary care trust’s
Clare with mum Vicki (above) and
exceptional funding panel, on account (below) with Buster
of the severity of Clare’s condition.
Happily, it worked.
“Since she has been on this drug and
had the surgery everything has kicked
in, and for the first time her joint pain –
and the uveitis – is being controlled,”
adds Vicki. “She only needs eye drops
twice a day now, not every two hours
and has hardly had any flare ups in the
past 18 months. Things are so much
better.”
Now a happy, tomboyish nine-year-old
who loves football and supports
Liverpool, Clare is doing well at school
although her mum believes there has
been real lack of understanding about
how arthritis affects her daughter.
“Because she looks well most of the
time they don’t realise that she gets
very tired in the afternoons, and can’t
always do what other children do.”
Being off school so often also caused
problems in that Clare often felt left out
and excluded. When Vicki and Clare
visited a child psychologist it was
suggested that she might benefit from
having a dog to keep her company.
“We’d talked about getting a dog for
ages and hadn’t got round to it, and
then I heard Clare talking to one of her
friends and she said: ‘If I lose my sight at
least I’d get a dog,’” says her mum.
“That did it.”
Clare and Buster the Labrador are now
inseparable.
Arthritis Today 11
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How Arthritis Research UK is
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A major UK-wide clinical trial is about to start which
researchers hope will prevent blindness in younger
children with arthritis, like Clare.
With funding of £1.5m jointly awarded by Arthritis
Research UK and the National Institute for Health
Research Health Technology Assesment (NIHR HTA)
programme, the trial aims to recruit more than 150
children with JIA, who are at risk of uveitis.
The study will be run by chief investigators
Dr Athimalaipet Ramanan, lead consultant in paediatric
rheumatology and honorary reader at Bristol Royal
Hospital for Children and (and Clare’s doctor since the
age of three) Dr Michael Beresford, senior lecturer in
paediatric medicine and honorary consultant paediatric
rheumatologist at Liverpool Children’s Hospital.
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The trial will test the effectiveness of adalimumab,
which is currently licensed to treat adults with
rheumatoid arthritis and children between the ages of
13 and 16 with JIA.
However, doctors hope that if they can show the drug
to be both safe and effective in reducing uveitis, it could
also be approved for use in children with arthritis of all
ages, in a range of doses.
JIA is a form of inflammatory joint disease that affects
around 15,000 children and teenagers between the
ages of six months and 17 years.
Fourteen paediatric rheumatology centres in the UK will
start recruiting youngsters this summer. Youngsters will
stay on the treatment for at least a year.
“If this trial shows that adalimumb is effective, it would
be great news for children with JIA whose eyes are
affected – children like Clare,” says Dr Ramanan. “Clare
was given adalimumab off-licence on account of the
severity of her uveitis. This is the whole reason for doing
the trial – we need to get the evidence for what is
becoming routine clinical practice.”
Current treatments are steroid eye drops, and for those
with severe disease, methotrexate, which is a standard
treatment for inflammatory forms of arthritis. Neither is
a cure, but both relieve symptoms to some extent.
The trial will test the effectiveness of giving adalimumab
by injection every two weeks, with methotrexate –
which is known to be effective in treating the symptoms
of inflammatory arthritis –compared to methotrexate
on its own. Earlier, small studies have shown that
children taking adalimumab have shown significant
improvement in their uveitis.
•
Arthritis Research UK’s funding for the uveitis trial has
been made possible by the generosity of a major
private donor.
Patient user groups
Three years ago
decided to invite
patients and frontline clinicians to help
make decisions about
what research we
should fund. Our
primary care centre
at Keele also uses
arthritis patients in
developing its
research programme.
Jane Tadman reports
on the rise of patient
power in influencing
research.
At the very first meeting of Arthritis
Research UK’s USER panel, set up to
provide a voice for patients and nonresearchers to have a greater say on the
kind of research the charity funds, it
was clear that the scientific community
had yet to embrace the concept fully.
The grant application forms sent in to
the charity by researchers were meant
to have been written specifically for a
lay audience – so no jargon, no
technical language but clear, plain,
straightforward English.
Grant applications were
waffly and poorly
constructed
However, many of the applications
pored over by the members of USER at
that meeting – a retired engineer, a
safety manager, a GP, an orthopaedic
surgeon and an NHS rheumatologist;
none of them actively engaged in
research – were impenetrable. As well
as containing deeply scientific
language, the forms the researchers
Carol Rhodes and Professor Pauline Ong, members of the user group at the
Arthritis Research UK Primary Care Centre
Power to the
patient
submitted were often poorly
constructed, waffly and too concerned
with showing off.
Shoot forward three years, and things
are looking up. After a shaky start
Arthritis Research UK’s USER panel now
plays an important role in making sure
our research is relevant and patientfocused. Nine lay members and seven
clinicians form the current panel, with
regular recruitment adding new blood.
The process has been tightened up.
Now USER looks at all project and
programme grant applications in which
the researcher has to provide a properly
structured lay case for support, which
Research manager Dr Lisa Croucher
compels them to answer very specific
“The language researchers use has to
questions:
be accessible to people without a
• What does the researcher want to scientific background, and steering a
find out?
path between the superficial or banal
• Why is this important?
and a level of complexity that is beyond
the USER panel is difficult,”
• How will answering the question acknowledges Dr Lisa Croucher,
benefit people with arthritis and Arthritis Research UK research manager,
musculoskeletal disease?
who is responsible for USER’s activities
and continuous development.
Arthritis Today 13
and has had a fully-functioning user
research group for several years.
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Members range from someone with a
PhD to a manual worker who left school
at 14, and Pauline Ong, professor of
health services research at the centre
admits it was very much a learning
exercise in the early days, with familiar
tales of scientific language baffling an
unconfident lay public.
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proposals, but are also involved in
creating ideas for research projects. Two
members of the group came up with the
research question that formed the basis
of a successful osteoarthritis programme
grant for example – direct evidence of
the value of patient involvement in
research.
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Dr Robert Marshall, rheumatologist and member of the Arthritis Research UK
USER panel
“However, there’s been a steady
improvement in the quality of lay
summaries,” says Dr Robert Marshall,
one of USER’s rheumatologist members.
“In the early days some of the
submissions were frankly dreadful,
reminding me of what my ‘A’ level
chemistry teacher told me many years
ago – there is no point being a brilliant
scientist if you can’t communicate
effectively! There is still a range in
quality, but we’ve all been impressed by
how the scientific community has risen
to the occasion.”
member David Chandler of his fellow
USERs: “It was soon obvious to me that
this was not a group that was going to
be fooled by woolly applications or
scientific jargon; they have real frontline
insights into the conditions, whether as
a patient or healthcare professional.”
Eventually the USER panel’s aim will be
to help to move the research agenda
along a path set by both the charity’s
goals and the aspirations, and needs of
the individuals who support the charity
and hope to benefit from its research.
However, it’s probably still a little early
If the researchers themselves are finding to be able to accurately measure
it easier to explain their research aims in whether USER is helping to influence
user-friendly language, members of the funding practice just yet.
USER panel have also grown in
Involving patients in research has been
confidence. Members have to be
going on a lot longer at the Arthritis
comfortable with scientific ideas,
Research UK Primary Care Centre at
confident enough to express their views
Keele University. The centre started
in a group setting, and not have a
using patients’ expertise back in 2000,
personal agenda of any kind, despite
having arthritis themselves. Says lay
One recent development was the
creation of a new post of a patient and
public involvement coordinator. Carol
Rhodes, a former accountant who has
fibromyalgia, has produced a glossary of
technical terms to help the user group
members to understand scientific
language, and she has been expanding
the group further from a small group of
eight people to a “virtual” group of 27,
whose expertise can be called upon as
and when required.
“Our users are now involved in more
than 16 projects, in a more formalised
way, at different stages of the research,”
says Carol. “They are not just dipping
their toe into the research projects: they
Professor Alan Silman, medical
director, who is a member of the
USER panel
(Dept AT0511), FREEPOST BA1059, STREET, SOMERSET BA16 0ZY
Arthritis Today 15
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The Arthritis Research UK USER panel
is not currently looking for new
members, but holds regular
recruitment rounds. For more
information about future membership
please contact Dr Lisa Croucher at
[email protected]
The USER panel, established in 2008, is
advisory and feeds into the relevant
scientific awarding committees. While
scientific excellence always forms the
bottom line for decision-making, USER
now provides a very clear and strong
steer, advising on the relevance of the
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Arthritis Research UK’s Epidemiology
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Arthritis Research UK feels strongly
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Arthritis Today 17
When his pain specialist suggested that
Barry Bell went on an intensive
“contextual cognitive behavioural
therapy” course, the former soldier was
deeply sceptical.
Back pain
Let’s talk
about
back pain
An ex-Royal Engineer with 12 years of
service, he had suffered from severe
back pain and sciatica since a tour of
duty during the first Gulf War, when he
developed prolapses in several discs in
different parts of the spine.
The former rugby referee had become a
virtual recluse, rarely leaving the house
except to attend medical appointments;
his confidence at rock bottom.
Barry’s back pain had meant he had to
leave the armed forces, and although
he had managed to find another job,
he was taking so much time off
undergoing numerous operations to
repair his damaged discs, that he
eventually gave up work at the
age of 37.
Can talking about back
pain help people to
manage it? One man
with severe chronic back
pain certainly thinks so,
and now Arthritis
Research UK is running a
pilot study which could
provide scientific proof
and lead to a full-scale
clinical trial.
“The pain affected my
whole life”
“I was very moody and had a tendency
to a very quick temper because of the
pain – I was also very depressed,
although didn’t realise it at the time,”
says Barry, now 45, from Forfar, near
Dundee. “The pain was so bad I
couldn’t stand up or sit down; it was like
red hot needles jabbing into my leg,
without relief, for 24 hours a day. Every
time I moved there was a searing pain.
It affected my whole life.
“When my pain specialist suggested
going on this talking course in Bath last
year I said to him: ‘If all the operations
I’ve had didn’t fix the problem, how will
talking about it fix it?’ I didn’t really
understand it,” says Barry. “Of course,
he quickly told me that it wouldn’t fix
my pain, but would help me handle it –
he was very clear about that.”
Pictured: Barry Bell near his home in Forfar
Barry agreed to attend the three week
intensive contextual cognitive
behavioural therapy (CCBT) course run
by psychologists Dr Lance McCracken
and Miles Thomson at the Royal
National Hospital for Rheumatic
Diseases in Bath, along with ten other
people with a number of different
conditions but a shared experience of
severe, chronic pain. He admits that at
the beginning he was still only 70 per
cent convinced that he would get
18 Arthritis Today
Combining the mindfulness technique
with some gentle gym work and
exercise, Barry found he was able to get
over his fear of walking down a busy
street. He’d previously been too afraid
of people bumping into him and
causing him intense pain. He also
organised a trip to watch a rugby match
with other patients whilst in Bath and
enjoyed a couple of pints after the
game; something that would have been
unthinkable previously. “I learned how
to get back into the human race. I had
sat in the house feeling sorry for myself
for a long time, but the Bath team
taught us to question ourselves and to
re-train our minds – a bit like you’d
re-train a puppy!”
Barry with his dog Samson
Barry wanted to achieve two objectives
from his time on the course: to have the
confidence to go out for a meal – he’d
stopped doing this because of his
inability to grip cutlery properly and
resulting self-consciousness – and to go
out for walks with his partner Trudi, her
daughters and their dog. He’s since
managed both, with flying colours.
“Since I’ve been back from the course
anything out of it and the first couple of I’ve gone for loads of walks and the
within two days of being home, me and
days didn’t go well.
Trudi and the girls went for a slap-up
“As a group we were shown a clock face meal. It was so good to tuck into that
and asked to divide it up into hours, to steak – without dropping my fork!
show what we did in a normal day,”
explains Barry. “I had been getting up
“There’s no stopping me
in the morning, going into the living
room, getting up and sitting down and now”
trying to get comfortable, and so my
“I used to make excuses for not doing
clock face was completely empty. There things but I don’t anymore and I’m a lot
was nothing on it, because I hadn’t
happier in myself. To go from the stage
done anything. I just stormed out of the I was at to the stage I’m at now is like
class and wanted to go home, because night and day. I still have pain, I still get
at that moment I realised that that’s all weary, but there’s no stopping me now.
my life was about – nothing.”
I proved to myself in Bath that I could
do it, that you can change your mental
“I learned how to get
attitude to pain; that it doesn’t have to
stop you doing things.”
back into the human
race”
However, after that moment of
epiphany, Barry realised he had to
commit himself to the course and
started to get his head around the
concept of “mindfulness”. He explains:
“You empty your body and mind and
concentrate all your attention on
feeling your toes moving, for example;
you visualise them, and then you focus
on the tingling, and then the sciatic
pain, visualising that too, and every
time you do it the pain eases a bit.”
Recently Barry popped into his local
rugby club for the first time in a long
while. “Everyone looked at me and said:
’we thought you were dead!’ Then it
was like I’d never been away. The course
has given me my confidence back, and I
have to take my hat off to the Bath
team; I’ve got a wee bit of life back. I’d
highly recommend it to anyone in
severe pain, although it’s not for
everyone – I know one of the girls on
my course didn’t get much out of it. You
have to be really committed.”
Arthritis Today 19
CCBT and the Arthritis
Research UK pilot study
With funding of more than £320,000,
study leaders psychologists Dr Tamar
Pincus from the Royal Holloway,
University of London, and Dr Lance
McCracken, from the Royal National
Hospital for Rheumatic Diseases in
Bath, are aiming to recruit 92 people
with severe back pain to test the
effectiveness of CCBT compared to
physiotherapy in a pilot project.
CCBT is slightly different to the more
traditional CBT, focusing on
acceptance and uses methods of
“mindfulness.” CBT has been the
subject of clinical trials in the past, but
Dr Pincus believes that this current
approach is the most rigorous.
“In several trials the CBT was not
delivered by a trained psychologist,
but a physiotherapist with a
weekend’s training. We will be using
clinical psychologists with three years
experience of pain,” she says. “The
other key thing is that we’re selecting
patients very specifically – people we
know have a real psychological need.
Not everyone with chronic back pain
needs this sort of approach.” CCBT
primarily aims to help those whose
chronic back pain has led them to
withdraw from society and normal
life, people who are known as “fear
avoidant”, such as Barry.
It’s good to talk but can it relieve
back pain?
20 Arthritis Today
Patients having CCBT choose what
their goals are and identify the
obstacles standing in their way – such
as confusion, fear, pain and fatigue;
and step by step slowly change their
behaviour patterns.
It can sound too good to be true but
Dr McCracken points out that three
previous studies on the effectiveness
Dr Tamar Pincus
Dr Lance McCracken of CCBT reported that participants
reduced their visits to the GP by 40
“We have to find out if it per cent, that one in three people
took fewer painkillers, and three times
makes a difference”
as many people were in work or
training after the course than at the
CCBT will be tested against an equally
start.
rigorously designed physiotherapy
regime. “We have one of the best
“These are the most severely disabled
physios in the country, Alison
chronic pain sufferers in the country,
McGregor, training up our physios, to
but this treatment frees them from
deliver a really good programme that
their struggling and allows them to
includes some cardiovascular work,
focus on things that are more
some education – everything but pure important and positive,” he adds.
psychology,” adds Dr Pincus. “We could
The pilot study will show if the team’s
be setting ourselves up for a fall by
trial methodology is sound and
making our control arm so robust, but
otherwise we will never find out if CCBT feasible, and if the treatment is
works, and, as a scientist, I want to see a acceptable and credible. If so, the
definite and significant result. We really team will then aim to develop a
have to find out if it makes a difference multi-centre trial that will also look at
as the government is spending a great both effectiveness and cost
effectiveness.
deal of money in developing CBT.”
“Step by step they
slowly change their
behaviour patterns”
Barry Bell: a new lease of life thanks
to CCBT
Patients having CCBT as part of the pilot
will have up to eight individual,
intensive one-to-one sessions with a
psychologist, in a process designed to
promote change in both the way they
think about their pain, and in their
behavior.
Lance McCracken explains how it
works: “One of the techniques we use is
called mindfulness. This means paying
more careful attention to our
experiences. It includes watching and
noticing things – thoughts and
sensations, and adopting an accepting
and observing attitude towards pain for
example, so that its impact reduces.
The process of being more conscious,
more aware and more focused on what
is going on around you means you’re
less controlled by influences that can
lead to inactivity or failure and less
overwhelmed by pain.”
Specialist footwear design
If the shoe fits...
Women whose rheumatoid arthritis affects
their feet often struggle to find stylish
footwear that doesn’t cripple them. Arthritis
Research UK has taken the first steps to
finding a solution.
One of the most painful symptoms of
rheumatoid arthritis is painful feet.
People with the condition have
compared the sensation in the soles of
their feet to walking on broken glass or
pebbles, and the toes and joints can
often become deformed as the
condition progresses.
Finding comfortable shoes then is
essential, but inevitably these tend to be
more practical shoes which can be
lacking in style, and not much good for
a formal occasion when smart shoes are
called for to go with a skirt or dress.
research fellow at the Helen Hamlyn
Centre at the Royal College of Art and
That was the background to a two-day
Fiona Candy, senior lecturer at the
footwear design
School of Art, Design and Performance
challenge funded
at UCLan.
by Arthritis
Research UK, held “Women with rheumatoid arthritis find it
last year at the
really difficult to find the right shoes for
University of
a special occasion such as a wedding or
Central Lancashire an evening out, or in their professional
(UCLan). The aim of life. Whilst the women are able to find
the challenge was comfortable orthopedic shoes that look
to bring together
women with
Dr Lynne Goodacre rheumatoid
arthritis, podiatrists
and orthotists with
top designers, to produce design
concepts with the potential to become a
prototype of a smart shoe.
“Through previous research we’ve
carried out to explore how rheumatoid
arthritis affects women’s self-image, we
know that the poor choice of
comfortable, smart shoes on the High
Street limits their clothing choices and
has an impact on their ability to present
themselves in the ways that they want
to,” explained Dr Lynne Goodacre,
senior lecturer in long-term conditions
at UCLan occupational therapy (who led
the project), Julia Cassim, senior
good with trousers or casual wear, they
often described them as being ‘clumpy’
and spoiling a nice outfit.”
Not an easy brief then, and it was very
important to get all the perspectives –
not just from the women with
rheumatoid arthritis who acted as
design partners but also from the
orthotists and podiatrists who
understand the need for shoes to
provide the right support and to protect
One of the designs to
emerge from the
footwear design
challenge
Arthritis Today 21
the joint. “We had to make sure that the
concepts accommodated the clinical
need as well as the aesthetic,” added
Lynne.
One of the big design dilemmas the
teams faced was that the trainers and
“comfort” shoes, worn by a large
number of people with arthritis, are
designed to be functional and practical,
whereas in formal shoes style is much
more important and comfort secondary;
it’s also much more difficult to insert
customised inserts or orthoses into
court shoes or a high-heeled shoe.
shoe to make enough space; wedge
heels (recommended height: no more
Over a period of two days three teams,
than 2.5cms); a rocker sole to relieve
each comprising women with
pressure on the ball of the foot, a
rheumatoid arthritis, designers,
wide-base heel to provide stability and
orthotists, podiatrists and student
grip, and so on.
iterns, came up with a range of
interesting early design concepts, which Said Lynne: “Inclusive design is based
demonstrated how, through using an
on the principle of bringing together
inclusive approach to design, attractive people with different perspectives to
High Street fashion shoes could be
inform the design process and come up
developed to meet the footwear health with workable solutions. The experience
needs of people with arthritis.
was highly productive.”
Ideas included gel inserts and
increasing the internal depth of the
way that will transform not only the
shoe industry but the lives of many
people for whom comfortable yet
stylish footwear remains a seemingly
unattainable dream.”
The design challenge has demonstrated
that the needs of people with arthritis
can be integrated into fashionable
shoes. The next challenge is of raising
awareness of the problems within the
footwear industry and showing ways in
which they can be overcome. The
outcomes of the workshop have the
potential to be used in a national forum
with representatives from the footwear
industry to open up the debate and
encourage them to think more
inclusively in their designs. Arthritis
Today will keep you in touch with future
developments.
•
Arthritis Research UK is currently also
evaluating the experiences of both
patients and health professionals in the
way that arthritis-related foot problems
are dealt with.
Added Julia Cassim: “We’re all united in
a desire to take our findings forward in a
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Focus on Edinburgh
Research into
practice
Focus on
Edinburgh
Patients with bone and joint diseases are
contributing to research which is leading to improved treatments,
courtesy of a huge investment by Arthritis Research UK in Scotland’s
capital city. Jane Tadman reports.
If there’s a successful model for how
research and clinical practice dovetail
together it’s in Edinburgh.
Patients with osteoporosis and Paget’s
disease of bone, gout and osteoarthritis
provide the samples of blood and DNA
which are used in genetics and other
studies and then directly benefit from
the results of that research through
better treatment and knowledge. It’s a
virtuous circle.
Arthritis Research UK professor of
rheumatology at the University of
Edinburgh Stuart Ralston, who arrived in
the city from Aberdeen six years ago,
combines cutting-edge research into
Professor Stuart Ralston in his laboratory at the Western General Hospital
the genetics of bone diseases with
treating patients. On the one hand he’s
consequent bone pain and often
totaling in excess of £2m from Arthritis
an internally renowned and much
deformity in the skull, pelvis, spine and
Research UK.
published expert in the field of bone
shin bones. It can be successfully treated
disease research, and on the other he’s a 99 per cent of patients
by drugs also used to treat osteoporosis,
medic running general rheumatology
called bisphosphonates.
agree to taking part in
clinics at the Western General Hospital.
There is a strong genetic element to
research
One of the first things he did on arrival
Paget’s and the condition often runs in
in the Scottish capital was to set up an
“We’re interested in the genetic basis of generations of families. One particular
osteoporosis service for Lothian, which
gene, called SQSTM1, has been
bone disease, gout and osteoarthritis
deals with 6,000 patients a year, and a
and patients who come to the clinic are identified and is known to play a part in
fracture liaison service, where everyone routinely asked if they’ll take part in
its development: in fact, if anyone
over the age of 55 who has suffered a
carries this particular genetic mutation
research and give a blood sample, and
fracture gets the chance to have their
there is a 90 per cent chance that they
99 per cent of them say yes.”
bone density checked by a DEXA scan
will develop Paget’s. However, carriers of
As a result, the Edinburgh team has built the gene may not develop symptoms of
– and then offered the appropriate
up a biobank of more than 2,500 DNA
treatment.
the disease until they’re in their sixties
samples, mostly from people with
and seventies.
“Setting up the service was important,
osteoporosis but also with Paget’s.
and it also fits into our research,”
Professor Ralston and his colleagues
explains Professor Ralston, who is based Paget’s disease of bone, which affects
have now identified three more genes
thousands of older people, leads to
that predispose people to develop
in the Institute of Genetics and
Paget’s disease, which they believe
accelerated bone growth and
Molecular Medicine and has grants
Arthritis Today 23
24
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Arthritis Research UK professor of rheumatology at the University of Edinburgh
Stuart Ralston
rheumatic disease. In collaboration with
Professor Alan Wright at the nearby MRC
Human Genetics Unit they identified a
gene that predisposes to gout. They also
recruited more than 600 patients with
osteoarthritis to the Arthritis Research
UK funded arcOGEN study of
osteoarthritis. Professor Ralston said:
“We expect that the results of arcOGEN
And now in separate but linked research, will be available soon and it’s likely that
the team are about to embark on a
this will provide us with new insights
five-year experimental medicine grant
into the genes that predispose to
from the charity that aims to find out if
osteoarthritis. When that happens the
they can detect and treat Paget’s
next step will be to determine why
disease – many years before symptoms these genes cause wear and tear of the
appear.
joints. We’re well placed to conduct that
research.”
could lead to the development of a
screening test to identify those most at
risk. The results of their study, published
in the leading journal Nature Genetics,
confirmed that genes play a crucial role
in the development of Paget’s disease,
which explains why so many people
have a family history of the condition.
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They want to establish if the disease can
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“Breakthroughs in identifying genetic
mutations that are responsible for
causing Paget’s disease have now made
it possible for genetic testing to be
carried out via a simple blood test,” says
Professor Ralston.
“This is a rare example of a real attempt
to use the results of genetic studies to
introduce a possibility of disease
prevention. If the people who are likely
to develop Paget’s later in life can be
identified in middle age, there is a
chance to stop the disease in its tracks.”
The Edinburgh researchers are also
working on the genetic basis of other
The Edinburgh team is also extremely
active in research into osteoporosis.
Osteoporosis, or thin, porous bones,
affects up to 30 per cent of women and
12 per cent of men at some point in life,
and leads to around 200,000 fractures
every year in the UK.
For the past three years researchers led
by Dr Jim Wilson have been looking to
identify the genes that predispose
people to develop various diseases in
the remote Isles of Orkney, one of which
is osteoporosis. Up to 2,000 people have
been recruited in Orkney, which was
specifically selected because the
population is isolated and stable, and
specific genes are easier to track down
and identify.
Research nurses have been running
bone density scanning sessions in
Kirkwall, and blood samples have been
taken and screened for their DNA back
in Edinburgh. Although the gene pool
among Orkney families is isolated from
the rest of the UK population, it’s
Stuart Ralston began looking at the
effects of cannabis on bones when he
was still in Aberdeen, and has published
widely in this area. Recently he has
found that the impact of cannabis on
bone health varies dramatically with
age. His most recent study has shown
that although cannabis can reduce bone
strength in young people, it may protect
against osteoporosis in later life. After an
investigation involving mice, the team
showed that a molecule found naturally
in the body which can be activated by
cannabis – called a type 1 cannabinoid
receptor – is key to the development of
osteoporosis.
Testing the effect of
cannabis on bones
The team is now planning to study the
effects on cannabis on bone health in
human volunteers; 200 heavy cannabis
users from general practices in
Edinburgh will be recruited to explore
the possible adverse or other effects of
recreational cannabis on their bones.
Cannabis users’ diet, exercise and
alcohol intake will also be taken into
account, since these factors also
influence bone health.
Of all the research achievements of the
past five years, Stuart Ralston believes
the genetic work on Paget’s that might
lead to the condition being screened for
and treated early has the greatest value.
“To identify markers that identify people
at risk for severe disease, and to be able
to treat people with early disease to
prevent complications happening, is
very exciting. So much genetic research
goes on that never has any practical
application, or leads to anything, but
this is different.”
He adds: “We have fabulous support
from Arthritis Research UK, and without
the charity’s support all this research
would not have been possible. We’ve
made huge advances in treating
osteoporosis; finding the molecules that
regulate bone turnover and turning
them into drugs. The message is the
power of biology, and Arthritis Research
UK shouldn’t forget – and it doesn’t –
about funding basic biology as well as
clinical research.”
Arthritis Today 25
Questions
and
answers
stem cells is occurring in many
branches of medicine, including
leukaemias, other cancers, neurological disease and musculoskeletal
disorders. Indeed, Arthritis Research
UK is funding such research in
Oswestry. However, the case is not yet
proven and it will take some time for
new treatments such as this to be fully
evaluated before they are approved
and widely available.
Editor’s note: the Arthritis Research UK
Tissue Engineering Centre, due to open in
Newcastle this summer, will carry out
research into the use of stem cells for
osteoarthritis. More details to follow in the
next edition of Arthritis Today.
I searched your site for tramadol and
saw a quote about there being a big
gap in the market since co-proxamol was
withdrawn, and that (see previous
solution. The Drug and Therapeutics
Bulletin, a respected independent
publication, had this to say about it:
“The studies have provided few data
to show that Targinact reduces, let
alone eliminates, the need for
laxatives in the long term, or whether
it offers advantages for people with
cancer. There are no published studies
comparing Targinact with other oral
strong opioids given with regular
stool-softening and stimulant
laxatives. Targinact is more expensive
than oral morphine plus regular
laxatives.”
My GP is talking of replacing
meloxicam with naproxen, but my
limited research suggests that this may
increase the risk of heart problems. I have
psoriatic arthritis and have been taking
meloxicam on and off since 1995.
Any advice?
Charles Gauton, Chelmsford, Essex
My wife has rheumatoid arthritis and
has been treated with rituximab.
We would be grateful if there is any
information on whether the use of this
drug might affect the perming of her hair.
She has had three perms since having the
treatment – the first was two weeks after
the second infusion and none of them
have taken. We therefore wondered if there is a possible link?
W J Lanigan, Bovey Tracey, Devon
I am getting desperate. I suffer from
both osteoarthritis and rheumatoid
arthritis. My greatest problem is
osteoarthritis in my cervical spine. For
about five years I have been in constant
pain, night and day. My rheumatologist
can only suggest exercises, heat, a collar
and painkillers (co-codamol) all to little
effect. I heard of someone who has Botox
injections three times a month which
brings great relief. Could you advise me
on this or any other treatment you think
Well this is a new one for me. I
would be successful? I am reaching the
have heard of hair loss although
end of my tether.
this is not so much of a problem with
Patricia Robbins Hale, Altrincham,
rituximab. People taking
Cheshire
methotrexate are much more likely to
I am sorry to hear about this.
complain of hair thinning. Applying a
Constant pain in the neck is one
permanent set to your hair is a
of
the
worst types of pain and I know
chemical based treatment and as such
from
personal
experience how
is fairly harsh on the hair. The slow rate
disabling
it
can
be. I have given Botox
of growth of hair, and the short time
injections
for
neck
conditions but only
after the rituximab, suggests to me
if
significant
muscle
spasm is present
that the rituximab had nothing to do
–
this
is
sometimes
referred
to as
with the ‘perm’ as the drug would not
spasmodic
torticollis.
Botox
works by
yet have been incorporated into the
(temporarily)
paralysing
the
muscles.
hair. I must remember to ask my other
It
is
a
drug
derived
from
the
bacteria
patients!
which cause botulism where
widespread muscle paralysis can
occur. It sounds worse than it is and
these injections have now been
introduced widely in medicine. You
have probably heard of their use in
plastic surgery. The paralysis is not
permanent but can last for a good
while. Often the injections have to be
repeated to maintain their benefit. In
your case it would be advisable to seek
an opinion from someone who
administers these treatments. Indeed,
other injections are a possibility –
selective nerve blocks for example –
which are usually given by
anaesthetists, working as pain
specialists.
The Q&A with Dr Helliwell will also
appear on our website at
Please write to Dr Helliwell c/o The
•Editor,
Arthritis Today, Arthritis Research
UK, St Mary’s Gate, Chesterfield,
Derbyshire S41 7TD or email
[email protected]
Meloxicam molecule
with Dr Philip Helliwell
SCIENCE PHOTO LIBRARY
My question is why is it likely to be
some time before proposed stem
cell treatments become available to
patients? I wondered if you have any
knowledge about Regenexx in Colorado
in the US. They appear to have mastered
the art of treating people using stem cells
for OA. What are your views on the work
they do? Regenexx cultured stem cell
procedure has currently been stopped by
the Food and Drug Administration in the
US. The FDA now deem the procedure to
be a drug and not a medical practice.
Regenexx are currently trying to reinstate
the procedure and believe it will take
between 4-12 months.
Robert Sturgess, Stafford, Staffordshire
columns in Arthritis Today) between
paracetamol and tramadol there was a
need for a stronger painkiller without the
constipating side-effects of codeine (in
co-codamol) and dihydrocodeine (in
co-dydramol). I then searched your site
for Targinact (which was featured in the
Daily Mail recently) and it returned no
result ... this I find quite unbelievable and
suggest that you immediately rectify. I
am a chronic pain sufferer amongst the
millions abandoned by the medical
profession.
Graham Thorpe, Hemel Hempstead,
Hertfordshire
I think your GP wants to change
meloxicam to naproxen because
there is evidence that naproxen is
better for your heart (in relative terms
– all non-steroidal anti-inflammatory
drugs carry a risk of heart disease but
this risk varies between drugs. This
I think there are a number of
became apparent when rofecoxib,
points here. The approval process
Vioxx, was incriminated). I think
I agree that the withdrawal of
for new drugs and devices is a lengthy
taking these drugs is a personal issue.
co-proxamol has been a big blow Some drugs suit some people better
one. Despite the ‘red tape’ these
to many patients. Funnily enough
procedures are largely designed to
than others. When taking any drug
small supplies of this drug are still
protect you from harm and to ensure
you also have to weigh up the
available, if you know where to look
that the cost of the procedure is
advantages (the benefits the drug
appropriate for the benefit it will give. for it and if your GP will prescribe it.
gives you) with the disadvantages
The latter role is currently undertaken And I completely agree that the
(usually the side-effects). I think
by the National Institute for Heath and constipating effect of morphine-like
perhaps you need to discuss this
drugs is a big drawback. However, I am further with your GP.
Clinical Excellence (NICE). As to
Regenexx I can tell you that work with not sure that Targinact is the perfect
26 Arthritis Today
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Arthritis Today 27
February 2011
Career development
fellowships
Dr Linda Troeberg, Department of
Matrix Biology, Kennedy Institute of
Rheumatology, Imperial College,
London; can we treat osteoarthritis
by restoring the natural protection
systems in cartilage? £425,761,
60 months.
Dr Nicola Walsh, Faculty of Health &
Life Sciences, University of the West of
England, Bristol; development of a
self-help exercise programme for
people with chronic knee pain,
£345,822, 60 months. (See page 9).
Project grants
Professor Charles Winlove, School of
Physics, University of Exeter, Exeter;
understanding the mechanical
properties of cartilage–the effects of
ageing and joint disease, £104,391,
24 months.
Dr James Bateman, Department of
Rheumatology, University Hospital
North Staffordshire NHS Trust,
Haywood Hospital, Stoke on Trent;
development of a web-based tool for
Professor Rizgar Mageed, Bone &
teaching musculoskeletal medicine
Joint Research Unit, Barts & The
skills to medical students – the
‘virtual patient’, £156,316, 36 months. London, London; disease-causing B
cells in lupus–a new target for drug
development? £199,545, 36 months.
PhD studentships
Dr Dagmar Scheel-Toellner,
Rheumatology Research Group,
University of Birmingham, Birmingham;
investigating ways to remove
damaging T cells from the inflamed
joint, £94,089, 36 months.
Dr Elizabeth Jury, Centre for
Rheumatology Research, University
College London, London; how do fats
such as cholesterol contribute to
disease in patients with lupus?
£100,760, 36 months.
Dr Hazel Screen, School of
Engineering & Materials Science, Queen
Mary, University of London, London;
using artificial fibres that mimic
tendon movement to investigate
ways to promote tendon repair,
£100,760, 36 months.
Dr Robert Froud, Centre for Health
Sciences, Queen Mary University of
London, London; can a better
understanding of how patients
perceive their back pain improve
treatment outcomes? £122,773,
36 months.
Allied health
professional
educational training
bursaries
Mrs Nicola Stanyer, Barker Unit,
Haywood Hospital, Stoke-on-Trent;
MSc in rheumatology nursing, £1,000,
12 months.
Mrs Nicola Glover, Department of
Physiotherapy, Whittington Hospital
Dr Paul Bowness, Nuffield Department NHS Trust, London; principles and
Clinical PhD
practice of joint and soft tissue
of Clinical Medicine, University of
injection, £520, 12 months.
Oxford;
does
an
abnormal
form
of
the
studentships
gene HLA-B27 lead to ankylosing
Mrs Linda Kent, Royal Oldham
Professor Jon Tobias, Academic
spondylitis? £101,568, 36 months.
Hospital, Oldham; rheumatology:
Rheumatology, University of Bristol,
disease process, treatment and care,
Dr
Catharien
Hilkens,
Musculoskeletal
Bristol; why are people with very
£823, 12 months.
Research
Group,
Newcastle
University,
dense bones more likely to develop
Newcastle-upon-Tyne;
can
bad
T
cells
osteoarthritis? £17,325, 36 months.
Miss Michelle Myburgh, Peterborough
be ‘switched off’ in rheumatoid
and Stamford NHS Trust, Peterborough,
Dr Elaine Dennison, MRC Lifecourse
arthritis? £94,089, 36 months.
BAHT Level II: management of
Epidemiology Unit, University of
rheumatoid arthritis, £425, 12 months.
Dr Gareth Hathway, School of
Southampton, Southampton; what
Biomedical Sciences, University of
effect does childhood growth and
Nottingham, Nottingham; the complex Allied health
adult lifestyle have on the risk of
developing osteoporosis in later life? web of pain signals from the joint
professional
and their processing by the brain:
£66,749, 36 months.
understanding the experience of
educational travel
pain in osteoarthritis, £94,089,
Clinical studies
award
36 months.
Dr Athimalaipet Ramanan,
Dr Lisa Roberts, School of Health
Department of Paediatric
Sciences, University of Southampton,
Programme grant
Rheumatology, University Hospitals
Southampton; World Confederation
Dr Andrew Clark, Kennedy Institute of
Bristol NHS Foundation Trust, Bristol;
for Physical Therapy, £500, 12 months.
Rheumatology, Imperial College,
can treatment with adalimumab
(See page 31).
London; glucocorticoids : time for a
reduce eye damage in children with
fresh think about the way they work?
JIA associated uveitis? £745,972,
£1,166,538, 60 months.
78 months. (See page 10).
28 Arthritis Today
AMRIPHOTO
Research
grants
awarded
Educational research
fellowship
The
hints
box
Tips for painful feet
Ruth Dallas writes about nodules under
her foot (Q&A Arthritis Today 151). I too
have rheumatoid arthritis and had a
similar growth under the joint of my great
toe. Initially thought to be a verucca, it has
responded well to appointments with my
podiatrist and regular use of a padded
tubular bandage. I used to have nodules
on my fingers and elbows, arising I’m told
from methotrexate, so it seems likely that
the one on the toe has the same cause. A
foot file or pumice stone won’t touch it
but the podiatrist’s scalpel does. Pressure
on the toe from tight-fitting shoes should
be avoided.
Christopher Roberts,
Market Harborough, Leicestershire
This may help the lady with pains in her
left foot. If she gets a half-cm-wide “bar”
secured to the sole of her shoe, this will
take the weight away from the painful
area and transfer it to where the bar is
secured (by a cobbler). I hope it will help
her as it helped my husband.
A Biczo, Royton, Oldham, Lancashire
Walking helps people with
osteoarthritis – and surgery!
I am a retired consultant paediatric
surgeon with osteoarthritis affecting
mainly my spine, hips and hands. I had a
menisectomy (surgery to remove torn
cartilage in the knee) in 1959 which of
course resulted in osteoarthritis of that
knee, although the other knee remains
fine. I have always walked, climbed hills,
cycled and ridden a great deal, and as a
result was able to carry on without knee
joint replacement until 2006.
My operation was very successful.
My orthopaedic surgeon is quite sure
that I managed 47 years postmenisectomy simply because I walked
so much. It stands to reason, I think, that
continued use of muscle groups is far
better than static quads exercises.
I am totally amazed therefore, to read in
the winter 2010 edition of Arthritis Today
of the attitude of some physios to
exercise. And no – patients cannot be
trusted to do boring exercises in the
house. Send them out in the fresh air to
walk, climb hills, climb stairs, etc – yes it
will hurt to start with but wears off as
you keep going and the joint will last
years longer before needing surgery!
I have now had my right hip replaced
three times, left hip once, left knee
once, have had metallic fusion in my
spine and a subsequent spinal
decompression I still walk two miles a
day and can walk up to five miles at the
age of 78.
Margaret Mayell, Woodborough,
Nottinghamshire
I was interested to read the letter from
Useful brands to help counter
Mary Kirk regarding the effect of tomatoes Sjögren’s dryness
The effects of tomatoes
on her arthritis. I too had a flare-up of
I read with interest the letter from Mary
symptoms which I put down to tomatoes. I’ve had Sjögren’s syndrome, along with
Kirk from Halesworth in Suffolk regarding
Since keeping off them I have been much other autoimmune problems, for decades.
her concern about the consumption of
One thing I have found is that using
better.
tomatoes. I have had rheumatoid and
Weleda natural oral care toothpaste has
osteoarthritis for the past 15 years, and I
Mrs A Wright, Tavistock, Devon
sorted out the mouth ulcers. (I use
find I get a reaction from tomatoes and
Editor’s note: Some people believe certain calendula because I have problems with
also strawberries. Bright-coloured fruit
peppermint). As skin and scalp difficulties
foods are bad for arthritis. These include
and vegetables bring on an attack of
can add to one’s misery, I would suggest
acidic
fruit
(e.g.
oranges,
lemons
and
arthritis in my knees, hands and jaw within
using Dead Sea natural mineral shampoo,
grapefruit)
and
vegetables
from
the
30 minutes to an hour. I have not eaten
usually available at Boots. Don’t be put off
so-called nightshade family including
meat or poultry for more than 20 years
potatoes, tomatoes, aubergines, chillies and by the price – it lasts for ages. Avoiding
and stopped eating fish 18 months ago.
laureth sulphate (a chemical used in many
peppers. There’s no scientific evidence that
During that 18 month period flare-ups
cosmetics) in any product I know is also
leaving
out
any
of
these
foods
helps
arthritis,
seem to occur more often and with more
advisable.
and
doing
so
may
reduce
the
beneficial
severity. I find that a healthy diet of
Cynthia Gittos, Colchester, Essex
vegetables on the bland side, exercise and antioxidants in the diet.
acupuncture seem to be the only form of
“medication” other than chemicals that
help me.
Views expressed in the hints box are those of readers and are not necessarily the
views
of Arthritis Research UK. The hints box is also published online on our website at
George Forsyth, Saltburn by the Sea,
Teeside
•
Arthritis Today 29
Meet
the
experts
Dr Daniel Tonge and Dr Lisa Roberts
explain their work in an ongoing
series of questions and answers with
Arthritis Research UK-funded
researchers.
Dr Daniel Tonge
What does your work involve?
I am a molecular biologist working at
the University of Nottingham
investigating changes in the quadriceps
(thigh) muscle that may contribute
towards, or accelerate the development
of, osteoarthritis of the knee. My work
involves extracting DNA from samples
of muscle and performing complex
analyses on it to identify changes in the
expression patterns of various genes.
The overall aim is to assess whether any
of these expression changes may be
responsible for changes in the thigh
muscle associated with osteoarthritis of
the knee.
How long has Arthritis Research
UK been funding you?
It has been three years since my funding
started. As well as providing funds for
the reagents and chemicals with which I
perform my experiments, Arthritis
Research UK also provide funding to
disseminate and discuss findings with
other scientists at specific osteoarthritis
conferences, most recently in Quebec
City, Canada. The opportunity to meet
regularly with other scientists and share
our findings is key to advancing our
knowledge of osteoarthritis as a whole.
What’s the most important thing
you have found out in the past
12 months? And why?
The most exciting finding over the past
12 months has been that some wellcharacterised models of knee
30 Arthritis Today
osteoarthritis show changes in their
thigh muscle during both the initiation
(start) and progression of the disease.
This is potentially very exciting in terms
of our understanding of the disease.
Further assessment of these changes
may help to explain why many people
with knee osteoarthritis have weakness
in their thigh muscles, and the relevance
of this.
What do you hope or expect
to achieve as a result of your
Arthritis Research UK funding?
During the course of my Arthritis
Research UK funding, I am hoping to
assess changes in the thigh muscles of
some of the established knee
osteoarthritis disease models. This will
allow an informed choice to be made on
which model best mirrors the muscle
changes we see in humans, and help to
ensure that any findings are relevant to
human health and disease. Following on
from this, I am hoping to understand
some of the signalling events that occur
in the body which may be responsible
for the changes in the thigh muscle
observed in people with knee
osteoarthritis. This may highlight
particular signalling molecules that
could be targeted by new medicines.
What do you do in a typical day?
A typical day for me is split between the
laboratory and office. In the laboratory
my time is spent preparing DNA from
samples of muscle, setting up new
experiments to measure various genes
or developing and validating new assays
(tests). In the office I spend time
analysing data using a series of
computer packages, maintaining
detailed laboratory notes and keeping
abreast of the most up-to-date research.
Some of my time is spent writing
scientific publications which appear in
various journals and allow scientists to
exchange their findings.
characterise very subtle changes in
muscle occurring around the time of
osteoarthritis development.
Dr Lisa Roberts
Why did you choose to do this
work?
My two main roles, as a senior lecturer at
the University of Southampton and
consultant physiotherapist at
Southampton General Hospital, enable
me to undertake a mix of research and
clinical work. My research programme
(made up of three studies), involves
measuring the communication and
clinical decisions that are made between
physiotherapists and people with back
pain. In the first study, I visited patients
at home (to understand their
expectations), observed their first
consultations, interviewed the
physiotherapists (about what they think
they said), and patients (about what
they think they heard), which was
fascinating. In the current study, I’m
observing the initial consultation and all
physiotherapy treatments for patients
with back pain, recording verbal
communication, body language, and
how treatment decisions are made. The
final study, planned for 2012, involves
running workshops for physiotherapists
to improve communication and
decision-making and measure the effect
on patient satisfaction and health
outcomes.
I graduated with a first-class degree in
Biomedical Sciences in 2003 before
undertaking a doctorate in molecular
biology at The University of Nottingham
under the direction of Dr Tim Parr,
funded by Arthritis Research UK. I have
always had an interest in both human
pathologies and molecular biology so
the opportunity to study the molecular
changes associated with osteoarthritis
was perfect!
Do you ever think about how
your work can help people with
arthritis?
Yes I do, it is my main motivation.
However as a scientist, I don’t get many
opportunities to speak directly with
patients. My work is focused on better
understanding the disease process, and
in the identification of potential targets
with which drugs can be directed.
What would you do if you weren’t
a scientist/ researcher?
I’d like to own a country pub in a
picturesque village with real ales, locally
sourced foods and a roaring log-fire.
About Dan
I enjoy good food, good beer, and walks
in the country with my wife Laura, who
is also a scientist!
•
Dr Daniel Tonge, based at
Nottingham University’s School of
Veterinary Medicine and Science, has
a PhD studentship from Arthritis
Research UK
What is your greatest research
achievement?
My greatest achievement to date has
been to read some of the DNA sequence
(the order of DNA bases A, C, T and G)
which codes for a well-known gene
family responsible for the contraction of
muscle. The DNA sequence of this gene
family was previously unknown in the
Dunkin Hartley guinea pig – a strain of
guinea pig that naturally develops
osteoarthritis. This particular finding has
paved the way for the development of
sensitive tests, allowing us to assess and
What does your work involve?
How long has Arthritis Research
UK been funding you?
My Arthritis Research UK fellowship
started in 2007 and will be complete in
2013.
What’s the most important thing
you have found out in the past
12 months? And why?
Previous research has suggested that
patient-therapist relationships are more
important to success than treatment
techniques. One of the most interesting
aspects of this work for me has been
asking clinicians what they think they
said about back pain diagnoses and
asking patients what message they took
home. It is interesting when these views
concur and fascinating to see how and
why differences arise. The findings are
relevant to health professionals who
seek to explain clinical findings to their
patients.
What do you hope or expect
to achieve as a result of your
Arthritis Research UK funding?
The aim of my research programme is to
listen to people who use the service,
find out what they value most in
health-care consultations and improve
Do you ever think about how
communication, to deliver better patient your work can help people with
experience and outcomes.
What do you do in a typical day?
Some days are spent gathering data
(observing treatment sessions) and
analysing the interactions and decisions
that occurred. Twice a week I’m at the
hospital, either in clinic assessing and
treating people with spinal and upper
limb pain, teaching, or helping
colleagues design and deliver audits.
The role is really varied and my clinical
work helps keep me focussed on how
my research can make a difference and
be applied in practice.
What is your greatest research
achievement?
There have been two events that really
stand out for me. The first was being
awarded my fellowship from Arthritis
Research UK and having this
opportunity to focus on improving
patients’ experiences, which I feel so
passionate about.
The second event happened in 2007 in
Vancouver, at the World Confederation
for Physical Therapy. Every four years,
physiotherapists from around the world
get together at a large conference and I
was fortunate to receive a travel award
from Arthritis Research UK to present
work I had been doing with colleagues
from the Wessex Neurological Centre,
reviewing ‘red flags’, which are signs and
symptoms that suggest a patient with
back pain may have a more serious
underlying condition. This work received
the only UK ‘Outstanding presentation’
award, (1 of 17 worldwide), which was
both a great surprise and honour. I am
really grateful to Arthritis Research UK
for making both of these events
possible.
arthritis?
Yes I do! Every week, through my clinical
work and research, I meet people with a
range of different symptoms, often
caused by arthritis. To hear how they
manage these and the challenges they
face keeps me motivated. I must confess
that I also have a vested interest in this
field, as I was diagnosed with seronegative arthritis when I was 19, which
serves as a daily reminder of the
importance of research in this area.
What would you do if you weren’t
a clinician/researcher?
I’d probably develop my passion for
dancing and finish my training to teach
dance. I met my husband ballroom and
Latin American dancing, and when we
finished our amateur exams (which took
12 years), we started our professional
exams together, which are a lot more
challenging!
About Lisa
I am a mum to a very busy eight-yearold and we love spending time as a
family, whether it’s working on brownie
projects, activities at church, music, local
history, arts and crafts or going on
picnics and walks in the beautiful New
Forest with friends and family. Apart
from dancing, I’m involved in scouting,
and work with the charity BackCare, as a
trustee and, for the last 21 years, helping
to run evening hydrotherapy sessions
for the Southampton branch. Life is
certainly full and fun: I only wish there
were more hours in the day!
•
Dr Lisa Roberts is an Arthritis
Research UK senior lecturer in
physiotherapy/ consultant
physiotherapist.
Why did you choose to do this
work?
The inspiration for this work came from
clinical practice. I had often discussed
with colleagues how two patients
presenting with similar conditions could
have such different outcomes, sparking
an interest in ‘non-specific treatment
effects’. This work builds upon my PhD,
which considered perceptions of control
in people with back pain, and
subsequent work undertaken by one of
my MSc students, Sally Bucksey, who
was also interested in communication.
Arthritis Today 31
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them, making everyone keen to watch
out for those unusual and quirky items.”
Our following grew as did our feedback
Since Arthritis Research UK’s eBay site was ratings and in 2008, with the backing of
set up in June 2006 it has raised the
Ken Dunning, Arthritis Research UK head
extraordinary sum of £100,000.
of retail, Wendy took on offices at
Bowthorpe, Norwich, above the charity
And with our Amazon account –
shop, so that the eBay project could
launched in June last year – already
bringing in more than £11,000, these two expand.
Our eBay and Amazon accounts are run
by internet sales manager Wendy
Bellison, who takes up the success story.
“The eBay project was started in June
2006 at the North Walsham shop by
district shop manager Margaret Barnes
and myself on a voluntary basis,” explains
Wendy, who has been involved in the
antiques world for many years and
worked for a number of auction houses.
“It soon became obvious that items that
didn’t have a particular value in the shops
were greatly sought-after on eBay: small
wooden carvings fetching £20/£30 each;
a rolled up amateur oil painting sold for
£350; suddenly we had a worldwide
audience and they liked what we had to
sell.
“Within 12 months I was employed full
time by Arthritis Research UK. It was
rather a tentative start with just me, a
basic computer and my trusty Kodak
camera. Photography of the items had to
be undertaken outside in all weathers
32 Arthritis Today
Recent sales include a dilapidated teddy
that was many decades past his best that
sold for £550 (this item was also Gift
Aided which added another 28 per cent);
a 1976 Fisher Price toy house that sold for
£62; a Victorian locket that sold to a
woman in Australia fetched £285; a pair of
binoculars were snapped up in Italy for
£102, with £37 being paid for six
microscope slides of squashed bugs!
Wendy now has one full-time assistant,
James Davey, who joined her in October
2010 and until recently Sarah Mayes, who
worked one day a week on the eBay
project. She also has a wealth of
volunteers who assist in various aspects
of the day-to-day running of both
accounts, from photography to
packaging to tea making.
Her hard work in building a solid and
reputable trading base is now paying off.
Arthritis Research UK now averages 120
eBay listings per week and sales are
growing weekly. All our items start on
eBay for 99p and have no reserve.
Adds Wendy: “We enjoy interaction with
our supporters and we listen to what they
have to say. eBay is a fun way to support
Arthritis Research UK and we welcome
everyone who wants to either donate
quirky items for us to sell or who like to
have a dabble in the bidding themselves.”
2009 saw the start of the charity’s
Amazon account which coincided with
the opening of Arthritis Research UK’s
The eBay link is: http://myworld.ebay.
first bookshop in York. Between Wendy in co.uk/mebarc
Norfolk and the bookshop in York we
The Amazon link is: http://www.
now keep a book inventory of around
amazon.co.uk/shops/arccharity
1,000 books.
•
•
Your views: results
from our survey
In our summer 2010 edition of Arthritis Today we enclosed a survey
asking for your views and stories on a variety of areas, ranging from your
personal connection to arthritis, your support of other charities, to what
you’re interested in hearing about and what you think is important for
us to prioritise our investment in.
Good luck
to London
Marathon
runners
on April 17
would like to thank and wish
our 2011 London Marathon runners
the very best of luck. We will be there
to support you every step of the way
and look forward to meeting you at
our post reception, where you’ll enjoy
a hot meal and a well deserved
massage.
people stated they experienced pain
We were delighted that 792 people
at levels 1 or 2 on the scale.
took the time to complete our survey.
We received some heartening stories
•Sadly, just over a quarter of
and gained some interesting insights
respondents stated that they
on the issues that concern you. A few of
experience pain levels of 4 or 5 on
the findings are summarised here:
the scale. This makes it unsurprising
that over half of people want to hear
Most readers have some interest in
Thank you for your hard work and
from us about effective pain
arthritis so we asked about the
commitment – good luck!
management and 46 per cent feel it’s
nature of your personal connection
an area we should prioritise
to the condition.
•When it comes to how we prioritise
investment in.
•All of the respondents have a close
our activity, half of all respondents
personal connection with arthritis.
think we should be researching ways
An overwhelming 697 people, 88 per
to prevent arthritis. Additionally, a
cent of respondents, themselves
massive 63 per cent of people feel
have some form of arthritis.
we should prioritise finding a cure for
Additionally 15 per cent of people
arthritis.
live with or care for someone with
Supporting our work
arthritis.
Over half of our work is only possible
As there are over 200 types of
because of the kindness of people who
arthritis we were keen to know more
include gifts in their wills. Raising
about the types you experience.
awareness about this form of support is
•A huge majority of respondents with
crucial for us to be able to increase the
arthritis suffer from one of two types:
research we can undertake and bring
osteoarthritis, which affects 56 per
forward the day when we can achieve
cent of people and rheumatoid
our vision of a world where arthritis
arthritis, affecting 27 per cent.
doesn’t wreck lives. We asked about
However, over 30 different types of
your attitude to supporting us in this
arthritis were mentioned.
way.
We know that pain is one of the most
•26 per cent of respondents indicated
We wanted to know what you want
devastating aspects of living with
that they would consider including a
arthritis. We wanted to find out more to hear from us about and what you
gift in their will to Arthritis Research
think is important for us to be
about the levels of pain people live
UK or have already done so, which is
investing in.
with.
incredibly heartening.
•Given
the
high
proportion
of
people
We asked people with arthritis to rate
•82 per cent of people stated that
with osteoarthritis it is unsurprising
the pain they experience on a scale
they have made a will.
that 55 per cent of people would like
from 1 to 5, where 1 equates to minimal
to hear from us about this condition. If you’d like information on how to
or occasional pain and 5 equates to
include a gift in your will or would like a
But additionally, over half of
constant agony.
respondents stated that they wish to copy of our free will-making guide
•The findings showed that just over a
please contact Jas Chahal, legacy
hear from us about finding better
third of people who live with some
advisor on 020 7612 9531 or visit
ways to manage pain, as well as
degree of pain put themselves at
www.arthritisresearchuk.org/
finding a cure for arthritis.
point 3 on the scale. A quarter of
legacies
Arthritis Today 33
“Just three years old when his body seized up”
No one knew what was wrong with
Christopher when his temperature
soared to 105 degrees and his little
hands closed shut.
“None of the
anti-TNF drugs
worked for
long.”
After spending six long weeks in
hospital, juvenile idiopathic arthritis
(JIA) was eventually diagnosed.
This type of arthritis affects thousands
of children in the UK,
causing inflammation,
pain and swelling to the joints.
After his diagnosis, Christopher
was prescribed steroids which
helped to control some of his
symptoms, but the effect of
the medication didn’t last for
long and soon all his joints
were affected and extremely
painful. He has the condition severely and is
frequently in a lot of pain. He has been on all
the anti-TNF drugs but their benefits were
short lived.
®
Despite his pain, his mum tells us
“Christopher makes it easy for us to cope, he
never complains even though he has been
through so much. Everyone loves him at his
school and in hospital.”
Although anti-TNF drugs transform the lives
of more than 70 per cent of people who take
them, there is still so much more work to do. Medical
research is the only way we will improve treatments for
arthritis and hopefully discover a cure.
Your donation will help children like Christopher
go on to lead happy and active lives. Please donate
whatever you can by completing the form below.
I want to support Christopher
and other arthritis sufferers
Are you a UK taxpayer?
No
Please treat all donations as Gift Aid until further
notice. My annual income tax and/or capital gains tax is
more than the tax Arthritis Research UK
will reclaim on my donations.
Initials
Surname
Address
Yes
If so, your donation could be worth almost 30% more,
helping us to fund vital work at no extra cost to you.
All you need to do is tick the box.
Please fill in this form and post it to: FREEPOST SF671, Arthritis Today, Arthritis Research UK,
PO Box 177, Chesterfield S41 7BR.
Title (Mr/Mrs/Ms/Other)
As the party started swinging, it was
clear who had taken their Jointace ...
Postcode
Postcode
We would like to contact you by email and telephone from time to time. If you would like to hear from us in this way please fill in your details below.
Email:
Home tel no:
can only accept
I would like to donate: (We
donations in UK Sterling)
£15
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Other £
I enclose my cheque/postal order/CAF voucher made payable to Arthritis Research UK
OR Please debit my Maestro/Mastercard/Visa/CAF Card/Amex
(Please delete as appropriate)
Card Number:
(Maestro only)
Valid from:
M M / Y
Expiry date:
Y
Issue No:
M M / Y
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(Maestro only)
Date:
D
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Signature:
ATTOD
Y
Y
Y
Data Protection Act: Arthritis Research UK and our
trading companies would like to hold your details
in order to contact you about our fundraising and
research. If you would prefer us not to use your
details in this way please tick the box and return
this letter to Arthritis Research UK. We do not sell
or swap your details with any third parties, but in
order to carry out our work we may need to pass
your details to service companies authorised to
act on our behalf.
Please visit our website at:
where you’ll find:
• Patients’ own experiences
• Detailed reports on
research projects
• Information to download
• Other ways to get involved
Arthritis Research UK is a registered charity in England and Wales no. 207711, Scotland no. SC041156.
Would you like to receive your own copy of Arthritis Today? To receive your free copy of our magazine simply call 0870 850 5000 or
write to: Arthritis Research UK, Copeman House, St Mary’s Gate, Chesterfield, Derbyshire, S41 7TD, UK
ARUK4767_ARUK_AT_ArthritisToday.indd 1
15/09/2010 12:12
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Arthritis Today Spring 2011

Transcription

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