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Arthritis Today
Summer 2011 | No 153
The magazine reporting research, treatment and education
Getting a grip
How our research is
helping people with
arthritis in their hands
Read all about it
Our new patient
booklets
Back to basics
Rehab after spinal
surgery – can it help?
GREAT VALUE OFFER FOR ARTHRITIS TODAY READERS
Such Great Value
The magazine reporting research, treatment and education. Published by Arthritis Research UK.
Feature highlights
SO MUCH INCLUDED
Services of a Travelsphere Tour Guide
Return scheduled flights to Rome,
returning from Naples
Seven nights’ accommodation, four nights’
half board and three nights’ bed and breakfast
Welcome drink
Included excursion - City tour of Rome
Optional excursions to St Peter’s & the Vatican,
Capri, Amalfi Coast, and Pompeii
A two-centre holiday with flights from Gatwick
Rome & Sorrento
8 DAYS FR
Take time to wander through the old cobbled streets
of the historic centre sample the delicious wines
and culinary delights of this region. During your stay
we offer the following superb selection of optional
excursions:
Capri - A full day excursion including a short ferry
crossing to the wonderful island of Capri; visit the
villages of Capri and Anacapri, the Gardens of Caesar
Augustus and see the Faraglioni Rocks.
Amalfi Coast - A full day excursion along the
stunning coastline with free time in the picturesque
town of Amalfi.
Pompeii - A half day trip including a guided walking
tour of this ancient city of the Roman Empire, frozen in
time when nearby Mount Vesuvius erupted in 79AD
and buried the entire area under a layer of hot ash.
DAY 8 - Naples/UK
Transfer to Naples airport for your return flight to the
UK. Meals: B
YOUR HOTELS
In Rome you will stay in the four star Hotel Pinewood.
All bedrooms feature satellite TV, hairdryer, minibar and
a safe. The hotel is five minutes from the subway.
In Sorrento you stay in the three star Hotel Tirrenia,
which has a lounge/bar, restaurant, TV room and lift. All
bedrooms feature private facilities, telephone and TV.
Meal Key: B = Breakfast, L = Lunch, D = Dinner
To book call 0800 987 5054
Opening hours: Monday to Friday 9am – 8pm, Saturday 9am – 4pm, Sunday 10am – 3pm.
or visit travelsphere.co.uk/arthritis
A lupus special
P 12
New patient
information
booklets
P17
Back to basics The search
Rehabilitation
for a cure
after spinal
surgery – can it
help?
P19
Spinal surgery can help some people
with severe back pain, but can a
rehabilitation programme following
surgery help recovery? You’d think the
answer would be obvious, but the
As well as all our usual features – the
popular Q&A with Dr Helliwell, the hints results of our clinical trial have thrown
up some interesting results. See page 19.
box, and meet the expert sections –
we’re looking at a number of issues we Finally, we shine the spotlight on our
research at Newcastle University; not
think will strike a chord with many
for the first time, but we make no
readers.
apologies as it’s one of the leading UK
For example, the problem of osteocentres for research into inflammatory
arthritis affecting the hand. With
forms of arthritis in adults and children.
surgery not always possible or
Catch up with the team’s latest news on
desirable, what are the options for
treating this painful condition? We look page 23.
A very warm welcome to the summer
edition of Arthritis Today; particularly to
those of you who might be new to
Arthritis Research UK and our work.
Dates & Prices
HOLIDAY REF: FIRS
GATWICK
British Airways – Depart 1405 hrs / Return arr. 1815 hrs
2011
23 Sep
£719
30 Sep
£719
27 Mar
£699
29 May
£779
11 Sep
£799
3 Apr
£749
5 Jun
£789
18 Sep
£749
17 Apr
£749
12 Jun
£789
25 Sep
£729
24 Apr
£769
19 Jun
£789
2 Oct
£729
1 May
£769
26 Jun
£789
9 Oct
£619
8 May
£769
3 Jul
£789
16 Oct
£619
15 May
£779
21 Aug
£799
23 Oct
£599
22 May
£779
4 Sep
£799
30 Oct
£599
2012
Single room from £130
All prices are per person based on two people sharing a twin
or double-bedded room with private facilities
TRANSFERS
Transfer time from the airport to your hotel is approx. 1 hour
Travelsphere is the No. 1 for escorted holidays.
ABTA No.V5874
arthritis of the
hand can be
treated
P10
Read all
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Welcome
£599
OM
This two-centre holiday has something for everyone – an outstanding
blend of the superb sights and cosmopolitan atmosphere of Italy’s capital,
combined with the style and beauty of the idyllically situated resort of Sorrento.
You’ll start your holiday with a three night stay in Rome.
We then head south for a four night stay in popular
Sorrento, overlooking the fabled Bay of Naples.
DAY 1 - UK/Rome
Depart on your scheduled flight to Rome.
On arrival, transfer to your hotel. Meals: D
DAYS 2 & 3 - Rome
Free to relax and enjoy our excursion programme:
Meals: B
The following excursion is included:
Rome - A full day tour with city guide featuring major
sights including the Colosseum and the Vatican City.
The following excursion is optional:
St Peter’s & the Vatican - This unforgettable excursion
to the Vatican city features a visit to the magnificent
Basilica of St Peter’s which dominates the Rome skyline
with it’s impressive dome. We include entrance to the
Vatican museums.
DAY 4 - Sorrento
Leaving Rome we head south, visiting Montecassino
Abbey and the British Commonwealth World War II
cemetery before continuing to Sorrento. Meals: B/D
DAYS 5 TO 7 - Sorrento
At leisure in this most endearing of resorts, set on a
spectacular headland with magnificent views across
the Bay of Naples. Sorrento combines a cosmopolitan
atmosphere with a truly Italian style.
Getting a grip George’s
How osteoliving legacy
With more than 30 years’ experience of delivering the very best holidays. Travelsphere customers
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Travelsphere is part of the
Page & Moy Travel Group
at the research being done doing in this Enjoy your read.
area, and at one woman’s experience of Jane Tadman
how special gadgets and equipment to
Editor, Arthritis Today
protect the hand joints can really help.
Find out more on page 10.
Many readers will be unaware that
lupus can lead to kidney failure. On
page 12, George Plumptre from the
National Gardens Scheme talks about
his donation of a kidney to his brother
who has lupus nephritis, and we also
highlight a major new genome
screening programme that will help
track down the causes of this serious
autoimmune disease.
We’re very proud of our recentlylaunched brand-new patient
information booklets, which have been
completely re-written and given a more
contemporary look and feel. Our
information content manager Michelle
Harrison explains the reasons for the
changes to the booklets on page 17.
www.arthritisresearchuk.org
Focus on research
in Newcastle
P23
The hints box
Pilates helps
osteoarthritic
knees
P 28
Contents
Our news and chief executive’s column 4
News about the latest research
7
Hand osteoarthritis – new research
10
Lupus – a real-life story
12
Our new patient booklets
17
Rehabilitation after back surgery
19
Questions and answers
21
Focus on our research in Newcastle
23
New research awarded
27
The hints box
28
Meet the expert – with Drs Philip
Helliwell and Arthur Pratt
30
Fundraising
32
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
enquiries@arthritisresearchuk.org
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
j.tadman@arthritisresearchuk.org
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: Christine Walker, who has osteoarthritis
of the hand, using specially adapted secateurs. See
page 10.
Arthritis Today 03
News
Fighting
talk
Policy & communications update
Kirsty Walker,
director
of policy and
communications
from Dr Liam O’Toole,
chief executive,
Arthritis Research UK
Making giving easier
Along with a team of dedicated staff
and volunteers I was privileged to
attend this year’s London Marathon,
and to cheer on our 60-plus runners,
who put body and soul on the line on
our behalf.
All our runners have first-hand
experience of what a debilitating
condition arthritis is, and considering
the emotional and physical challenge
they faced on the day, all should be
extremely proud of themselves.
I must make special mention of our own
Michelle Harrison, information content
manager. Michelle has been in charge
of overhauling all our patient booklets
for their successful spring launch, but
nevertheless found the time over the
winter months to train and get into
shape for the marathon – her first-ever
competitive event.
I hope you have had the chance to see
our fantastic new range of information
booklets (see page 17). Michelle and her
team have done a terrific job in
bringing our old publications up to
date. We know that knowledge can be a
powerful tool to help patients to feel
empowered and more in control. Our
booklets are part of our mission to be
the ‘trusted portal’ for patients and
health professionals alike: to provide
the best and most up-to-date
information on all types of arthritis.
people greater choice and control over
their healthcare and support improves
their health and well-being.
If you are given a personal health
budget, you will develop a care plan
with your health professional. In due
course, Arthritis Research UK might also
be able to help with this.
Your plan would set out your health
needs, the outcomes you want to
achieve, the amount of money in the
budget and how it can be spent. The
idea is to give you more choice and
control over the sort of support you
receive.
As part of its Big Society initiative, the
Government has been looking at what
it can do to stimulate giving – of time
and money – to good causes.
There are some good, innovative
In the pilot, people are using their
proposals. For example, the ‘Round
money in novel ways. One person who
Pound’ initiative enables shoppers
had trouble sleeping, for example, was
paying by credit card to round up their allowed to spend some of her budget
bill to the nearest pound, giving the
on buying a special mattress.
pennies of their electronic change to
charity. There’s
also a scheme
that the LINK
network is
planning, to
enable you to
make charitable
donations at cash
machines. The
Government is
exploring the
option of offering
Gift Aid on
donations of this
kind.
Arthritis Research
UK welcomes
Round up your bill at the checkout – for charity
these ideas, but
A personal health budget will not cover
there is one disappointment. We and
every NHS service you may need; for
others proposed to the government
example, it doesn’t include emergency
that tax changes should be made to
allow donors to give assets to charities care, GP visits or medications.
but retain the benefit from them during The experiment is being conducted in
their lifetime. These so-called ‘living
20 sites around the country. If you are
legacies’ have been popular in the US,
someone who is taking part in this
but the UK government has so far
exercise, we’d like to hear from you.
declined to move forward on them. We Please contact us at campaigns@
will continue to press the case.
arthritisresearchuk.org
Personal health budgets
Results are due in October 2012 and will
inform future government decisions
Would you like a personal health
about rolling out the scheme to people
budget, for you to spend on treatment with long-term conditions nationwide.
and care for your arthritis?
More information can be found at
This novel idea is currently being tested www.dh.gov.uk/
personalhealthbudgets
by the Department of Health. Its pilot
study aims to investigate if giving
04 Arthritis Today
Research news
Hope of screening test for bone disease
Scientists have
discovered that at
least seven genes
may account for
the development
of Paget’s disease, a
painful bone
condition that
affects up to one
million people in
the UK.
The international
team of scientists,
Professor Stuart
led by the
Ralston
University of
Edinburgh, believe the genes are involved
in regulating the rate at which bone is
renewed and repaired, providing an
explanation of why the disease occurs.
They are also hopeful that the discovery
will bring the likelihood of genetic
screening tests to identify those at risk of
developing Paget’s a step closer.
Professor Stuart Ralston, Arthritis Research
UK professor of rheumatology, who led
the study at the University of Edinburgh
with Dr Omar Albagha, said: “We have now
identified seven genes that predispose
people to Paget’s. The effect of these is
large, and together they considerably
increase the risk of developing the
condition.
“Our work shows that these genes
together very strongly predict the
development of Paget’s disease. Their
effects are so powerful that they could be
of real value in screening for risk of the
disease. This is important since we know
that if treatment is left too late, then
irreversible damage to the bones can
occur. If we were able to intervene at an
early stage with preventative therapy,
guided by genetic profiling, this would be
a major advance.”
Paget’s disease disrupts the body’s normal
process of breaking down old bone and
replacing it. The condition leads to
enlarged and malformed bones and
patients can suffer from bone pain, brittle
bones susceptible to fractures, and
Stem cell therapy for
meniscal cartilage tears
Scientists are embarking on early clinical
testing of a pioneering stem cell bandage
which is designed to treat meniscal
cartilage tears.
Meniscal cartilage plays an important role
in the knee joint, where it acts like a shock
absorber. A torn meniscus is typically
treated by removing the damaged
cartilage, but this often results in the early
onset of osteoarthritis.
Scientists at Azellon Ltd, a University of
Bristol spin-out company, hope that their
new stem cell bandage product will provide
an alternative and less invasive treatment.
The bandage is seeded with the patient’s
own stem cells and is implanted into the
patient’s injured knee using a specially
designed instrument.
It is hoped that, once in place, the stem cells
will help to repair the torn cartilage and
reduce the risk of early-onset osteoarthritis.
Arthritis Research UK professor of
rheumatology and tissue engineering
Anthony Hollander, chief scientific officer at
Azellon Ltd and head of the University of
Bristol’s School of Cellular and Molecular
Medicine, said that the approval for a
phase-I trial represents “an important
milestone in the development of stem cell
therapies in the UK”.
advanced arthritis. It affects more people
in the UK than anywhere else in the world.
Researchers – funded by Arthritis Research
UK and the Paget’s Association – studied
2,215 patients with Paget’s disease to find
the genes that could cause the condition.
The team – which included scientists from
the UK, Australia, Spain, Italy, Holland and
Belgium – found four genes that were
faulty more frequently in patients with the
bone disease than in healthy people. Last
year they used a similar approach to
identify three genes that caused the
condition.
The results – published in the journal
Nature Genetics – confirm that genes play
a crucial role in the development of
Paget’s disease, which explains why many
patients have a family history of the
condition.
Professor Ralston is now setting up a new
clinical trial aiming to identify people at
risk of Paget’s and to offer them
preventative treatment.
Shaping the future
of musculoskeletal
services
Professor Anthony Hollander
He added: “These cells hold much scientific
and medical promise but we can only know
if they work or not by testing them out in
clinical trials. The effective repair of
meniscal tears would represent a significant
advance in treatment, particularly for
younger patients and athletes, by reducing
the likelihood of early-onset osteoarthritis,
and would offer an exciting new treatment
option for surgeons.”
A spokesman for Arthritis Research UK said
that Professor Hollander’s work, and its
similar research at Keele University
investigating the effectiveness of stem cells
taken from a patient’s bone marrow to
repair osteoarthritis of the knees, were both
hugely exciting projects which offered a
real hope of better treatment.
In June Arthritis Research UK hosted
its first ever multi-disciplinary
musculoskeletal meeting. Over 70
healthcare professionals gathered in
London to hear renowned speakers
offer their views on both the current
state, and the future of musculoskeletal
services. Though it wasn’t all listening
– attendees had the opportunity to get
involved and to debate the issues with
their peers via lively discussions and
workshops.
Delegates came from across the UK and
represented all the professionals
involved in musculoskeletal care,
including rheumatologists, GPs,
physiotherapists, service managers and
sports and exercise medicine
specialists. Putting patient experience
at the heart of services was the
overarching consensus from the day.
This meeting was the start of an
on-going dialogue amongst these key
professionals; the group will continue to
meet and to share ideas to help shape
the future of musculoskeletal services.
Arthritis Today 05
As the party started swinging, it was
clear who was staying flexible...
Research news
Group therapy helps rheumatoid
arthritis patients manage fatigue
Group behavioural therapy could help
rheumatoid arthritis patients to learn how
to manage their fatigue, a new trial funded
by Arthritis Research UK suggests.
A team of scientists from the University of
the West of England and University
Hospitals Bristol investigated the effect of
group cognitive behavioural therapy on
fatigue self-management in patients
suffering from the debilitating condition.
The talking therapy aims to help people
manage their pain by identifying and
evaluating thoughts and behaviour using
goal-orientated discussions and
encouraging techniques for self-help once
group sessions have ended.
Led by Drs Sarah Hewlett and Nick Ambler,
the team found that six weekly two-hour
group sessions on fatigue self-management
were enough to help patients with
rheumatoid arthritis reduce the exhaustion
that can accompany the condition.
Publishing their findings in the Annals of the
Rheumatic Diseases, they explained that 65
patients were given cognitive behavioural
Dr Sarah Hewlett
therapy while a control group of 62
“Group cognitive behavioural therapy for
participants received fatigue information
alone.
self-management in rheumatoid arthritis
After 18 weeks, both testing methods used improves fatigue impact, coping and
to assess fatigue showed improved levels in perceived severity and well-being,” the
team concluded.
the group that had received the sessions.
Beyond fatigue, participants on the
cognitive behaviour therapy course were
also found to be coping better with their
arthritis in general.
The results also indicate that these patients
were less likely to be suffering from
depression, helplessness, self-efficacy or
sleep problems.
“Cognitive behavioural therapy is more
commonly delivered to individuals,
exploring their unique links between
thoughts, feelings and behaviours, but this
study showed that group cognitive
behavioural therapy can pursue individual
goal-setting in subgroups and still improve
fatigue and well-being.”
New national register for children with arthritis
inflammatory arthritis in adults and
children. The first drugs in the class, known
as anti-TNF therapy, were developed by
Arthritis Research UK for the treatment of
Arthritis Research UK is spending more than rheumatoid arthritis about 10 years ago,
but have also been found to have been just
£700,000 on establishing and maintaining
effective in treating even very young
the juvenile idiopathic arthritis (JIA)
biologics register over the next five years at children.
its epidemiology unit at the University of
Manchester.
A new national register has been set up to
monitor the long-term safety and
effectiveness of biologic drugs used in
children with arthritis.
Flexibility
The charity is also establishing a new
biobank of blood and/or saliva samples
from children that will be used to test
whether there are variations in genes which
can predict who will respond to the drugs,
and who may get serious side-effects.
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Currently 700 children with arthritis in the
UK who are taking etanercept, the only
biologic therapy currently licensed to treat
the condition, are on a register funded by
the manufacturer of the drug.
The new register will include up to 250
youngsters who are taking one of the other
seven existing biologic drugs. Although the
drugs are only currently available offlicence, there is increasing evidence that
these alternatives are also effective.
Biologic drugs are a new class of drugs
which have transformed the treatment of
in rheumatic disease epidemiology at the
University of Manchester, who is in charge
of the register.
“Although the new biologic drugs have
revolutionised the treatment of JIA they are
not a cure, and children need long-term
treatment. Parents and children ask about
side-effects and whether or not the
treatment will work for them. The answers
to such questions are currently lacking, and
the long-term risks are unknown. We
expect the register and the biobank to
answer those questions.”
Dr Hyrich added there was increasing
evidence that there were occasions when
an alternative to etanercept as a first line
biologic should be considered, and newer
biologic drugs were on the way. “Hence the
need for a national demographic picture of
biologic use in children is crucial,” she said.
JIA expert Professor Helen Forster
with a young patient
“Until the emergence of biologic drugs,
treatment options for severe JIA were
limited to methotrexate and steroids,
although many children failed to respond
adequately or developed side-effects,”
explained Dr Kimme Hyrich, senior lecturer
Children being started on biologics will
have their details entered on the register. A
control group of children starting the
conventional therapy of methotrexate will
also be followed, to compare the outcome.
To date 18 hospitals are involved in the
study and within the first year 50 children
receiving a biologic and 50 controls have
been added to the register.
Arthritis Today 07
Hear again
with nothing
in either ear
Research news
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People who take anti-TNF therapies for inflammatory arthritis
are unlikely to face an increased risk of cancer, new research
suggests.
A study presented at the annual congress of the European
League Against Rheumatism (EULAR) in London this spring
looked for an association, after previous research suggested
that taking anti-TNFs might increase an individual’s risk of
developing cancer.
But the nine-year follow-up study at Gentofte University
Hospital in Denmark found no evidence of an overall increase
in risk among this group of patients.
The researchers analysed data on 13,699 patients with
rheumatoid arthritis, psoriatic arthritis or ankylosing
spondylitis, 41 per cent of whom (5,598 patients) had started
taking anti-TNFs.
No difference
And there's nothing in the ear to irritate
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you are watching TV or going to the theatre,
cinema, meetings or out shopping then take
a look at the Evo 1, it could bring the joy
of living.
Study finds no evidence of link
between anti-TNF drugs and
increased cancer risk
When the incidence of cancer among patients who took
anti-TNFs was compared with that among patients who had
never taken the drugs, the researchers found no difference in
the risk of developing cancer.
There was also no association between the duration of antiTNF therapy and risk of cancer.
Furthermore, the researchers found that a person’s risk of
developing a first cancer was not linked to the type of arthritis
they had.
Dr Lene Dreyer, from the hospital’s department of
rheumatology, said: “TNF is a small signalling molecule called a
cytokine and is able to inhibit the development of tumours by
interfering with signalling pathways. Therefore drugs targeting
TNF can influence the development of tumours, although the
extent of this impact remains unclear.
“Some studies have suggested that taking anti-TNFs may
increase an individual’s risk of cancer; however, this study
provides long-term evidence that an overall risk of cancer is
not associated with this group of treatments.”
“Reassuring”
A spokesperson for Arthritis Research UK, which pioneered and
developed the treatment for inflammatory arthritis, said the
results of the study would be reassuring to people taking
anti-TNF therapy.
“Our own studies have not established a link between anti-TNF
and developing cancer,” she said. “However, anti-TNF is not
recommended for people who have previously had cancer –
especially in the ten years before considering starting anti-TNF
– because it may increase the risk of the original cancer coming
back or another one developing.”
The charity hosts a national biologics register at its
epidemiology unit at Manchester University, which monitors
levels of infection, adverse reactions and the progress of
patients with severe rheumatoid arthritis and other
inflammatory types of arthritis on anti-TNF therapy.
Arthritis Today 09
Hand osteoarthritis
Surgical options for
hand osteoarthritis
Hands on
approach to
osteoarthritis
Thumb joint: The commonest form
of surgery option for hand
osteoarthritis is a trapeziectomy,
also known as an excision
arthroplasty, which has an excellent
outcome. Surgery involves the
removal of the thumb joint,
replacing it with an augmented
ligament reconstruction. The
thumb joint can also be replaced
but there are no long-term results
available; or fused, again, results are
not particularly good.
Knuckle joints: Replacement is a
good option, fusion much less so.
Middle finger joint: Fusion is a
good option. Replacement is also
possible, but although this
approach removes pain, it does not
provide extra movement.
Stiff, painful hands can make everyday life
almost impossible. New research is showing
how to improve the quality of life for those
people who are affected.
Finger tip joints: These cannot be
replaced; only fused, leading to
some restriction in movement.
Imagine not being able to open a tin,
peel or chop vegetables, dry yourself
properly after a bath or even pick up a
kettle to make a cup of tea; everyday
activities that most people take entirely
for granted.
It became increasingly challenging for
Christine to hold a pen or a sewing
needle, and she found that paint brushes
slipped out of her hand. “The kind of
things you take for granted became very
difficult,” she says.
start, will look at the effectiveness of
thumb splinting.
Yet for people with osteoarthritis in their
hands, the constant pain and stiffness in
their fingers or thumb joints make such
basic activities extremely difficult. And
while it’s generally recognised by the
medical profession that rheumatoid
arthritis can have severe, painful and
deforming effects on the hands, the same
recognition is not accorded to people
with osteoarthritis.
“I wanted to get a knife
and chop off the lumps
on my fingers…”
Sixty-eight year-old Christine Walker from
Cheshire has suffered from severe nodal
osteoarthritis for the past 15 years.
“A number of times I just wanted to get a
knife to my hand and chop off the lumps
on my fingers; they were so painful,” she
says.
“It’s also very painful, especially when I
wake up in the morning. I can’t turn the
pages of a newspaper, dry myself with a
towel after a bath; I can’t write very well
– it looks like a spider has crawled across
the page – and my thumbs go numb
when I’m cold. Carrying heavy shopping
bags is a problem; I can’t put gloves on –
or dry spoons! I just about cope, but it’s
no fun at all. If you don’t have the use of
your hands, you’re stuck.”
In the SMOotH study (which was
presented at a major European
rheumatology conference, EULAR, in
London in June) Professor Dziedzic and
OT colleagues recruited 257 people with
hand osteoarthritis to test the
effectiveness of joint protection and
exercises, both delivered by an OT.
Education – which involved giving some
patients an educational leaflet – was also
assessed.
Christine developed knobbly, painful
fingers in her 50s while working at
Manchester Metropolitan University. “I
get red lumps on my fingers like small
cysts which are very painful while they
are growing, but once they’re calcified
they hurt less. But they look horrible and
my hands have got progressively stiffer.”
10 Arthritis Today
A real mine of
information
Christine Walker, pictured above and left, with a variety of the gadgets that
make everyday life easier
Arthritis Research UK Primary Care Centre
at Keele University, more than 12 per cent
of people over the age of 50 have severe
hand-related disability. Of these, 38 per
cent had seen their GP but only three per
cent had seen an occupational therapist
(OT); therapists who help people with
daily living by giving practical advice on
aids and equipment. The research also
showed that many people with hand
osteoarthritis who went to their GP had
been told that nothing could be done, so
they never went back.
Sixty-four year-old Penny Hogg from
Bramley near Guildford, has had a similar
experience. “I have osteoarthritis in both
my thumbs, which makes menial tasks
very tough,” she says.
What can be done?
So what can be done to help people with
osteoarthritis of the hand? Joint
protection and exercise are two very
practical options, and evidence has
shown that both approaches used
together can be helpful.
The hand exercises were based on what
OTs currently use in their NHS treatments
Krysia Dziedzic, an academic
and involved strengthening and
physiotherapist and professor of
musculoskeletal therapies at the Arthritis mobilising exercises. Joint protection was
Research UK Primary Care Centre at Keele all about group work, where participants
were shown gadgets to use to help them
– and a longstanding expert in hand
Unlike replacement surgery of the larger osteoarthritis – is involved in two Arthritis prepare a simple meal and techniques to
help them cope with everyday activities.
joints in the body such as the hip or knee, Research UK-funded clinical trials into
finding more practical ways of improving They were then encouraged to go out
surgery to replace joints in the hand is
and buy those gadgets which worked
treatment. The first, which has recently
not widely performed in people with
osteoarthritis. And until recently the
been completed, aimed to find out which best for them.
standard approach to treating
of the two treatments, joint protection or Christine Walker took part in the SMOotH
osteoarthritis in the hand was taking pain hand exercises, worked better than
trial at Leighton Hospital. “It showed me
medication.
some very practical ways of coping, and
advice leaflets. The second, about to
Osteoarthritis of the hand is a big
problem, which until fairly recently has
not been addressed by researchers.
According to a recent study at the
Arthritis Today 11
was a real mine of information,” she says.
“I thought I knew every single modern
piece of equipment and aid but I had my
eyes opened! The group was a great
source of information, with tips from
other people, too.”
“I’d struggled with potato peelers and tin
openers but found there were much
better ones available. We were shown
how to squeeze out a dish cloth, how to
hold a kettle with two hands and take the
top off a hot water bottle and shown
gadgets that release the vacuums in jars.
It was really practical information of
interest to people like me and it made an
enormous difference.”
Christine also found the education arm of
the trial useful too. “I learned that
osteoarthritis is all about wear and repair,
not wear and tear; something I hadn’t
thought about. It gave me insight into
what was going on under the skin.”
The results of the trial are yet to be
published but the findings are important,
as they show that simple joint protection
approaches can be effective.
“Joint protection gives
people some control
over their pain…”
“It’s easy for people to pick up joint
protection techniques that help them,
and this approach very quickly gives
people some control over their pain and
gives them a feeling of confidence that
they can do something about it,”
Professor Dziedzic explains. “Joint
protection is easier to adapt into their
everyday lives than activity or exercise.”
Building on these results, Professor
Dziedzic is now liaising with Dr Jo Adams,
senior lecturer and professional lead in
OT at Southampton University, on a
two-year pilot trial of 30 patients whose
osteoarthritis affects specifically their
thumbs.
Lupus: a special report
George’s living legacy
On 20 March 2009 I underwent an
operation to give a kidney to my younger
brother, Francis. Aged 53, over a period of
months I was introduced to the
remarkable world of transplant surgery
and living donorship which is, in these
days of so much criticism of and despair
about our health service, a beacon of
positiveness and quality.
But before describing the transplant
experience some background about
Francis’s health is necessary. Francis, who
is 46, had had a long history of kidney
failure. A serious accident involving major
head injuries when he was 13 resulted in
many years of ill health, and he contracted
lupus in 1987. Lupus is an autoimmune
disease and analysis at the time and
afterwards confirmed that the onset of
lupus resulted from Francis having
previously contracted Henoch-Schönlein
purpura, a type of vasculitis.
Total renal failure
The lupus took hold rapidly and a few
months later he suffered total renal
failure. Emergency treatment saved his
life and led to a programme of dialysis to
keep him alive. Despite the short-term
devastating effect of the lupus, over a
period of years it was controlled by careful
medication until the threat receded for
good.
George Plumptre, on the right of the picture, with brother Francis
12 Arthritis Today
Dialysis was a wonderful invention and
offers life to people who, a generation
The pilot aims to find out if as well as
offering one-to-one consultations with
OTs providing joint protection and
exercise, a thumb splint can make a
difference. The findings will be used to
design a full trial. Use of a placebo splint
will help to establish whether it is the
splint itself that is effective or the whole
procedure of providing a splint.
“We found that 90 per cent of the people
in the SMOotH trial had some problems
with their thumbs, and we know that 20
per cent of the population aged over 50
have osteoarthritis of the thumb – it’s one
of the most common sites of osteoarthritis and pain, yet again, rarely
considered by researchers,” says Professor
Dziedzic.
Patients will take part in forums to discuss
their experiences and impact of
osteoarthritis of the hand and also their
treatment preferences. They will also be
asked to give their input into the best
type of splint to be used.
“We want to be able to produce an
evidence-based package of the best
occupational therapy care for patients.”
Christine Walker agrees: “If GPs and
nurses could give out the tips we learned
in the trial to their patients during their
consultations it would be hugely helpful,
and enable people to manage most of
things they want to do.”
• For more information on joint
protection see Arthritis Research UK’s
new booklets: Looking after your joints
when you have arthritis, Everyday living
and arthritis, Hand and wrist surgery
and Splints for arthritis of the wrist and
hand available at 0300 790 0400 or
enquiries@arthritisresearchuk.org
They can also be downloaded from our
website at
Two years ago former Times gardening correspondent George Plumptre
donated a kidney to his brother Francis, when lupus caused his kidneys
to fail. Now chief executive of the National Gardens Scheme, which
made Arthritis Research UK its guest charity in 2010–11, he tells how his
donation transformed his brother’s life.
ago, would have died. But it is a
mechanical alternative to a complex
bodily function and can never provide the
same service. In 1993 the long-awaited
breakthrough was offered when he had
his first transplant, with a cadaver kidney
as was the norm at that time. But the
transplant failed, Francis rejected the
kidney and after a period of lifethreatening illness he had no option but
to return to the bleak routine of dialysis
three times a week.
the third. Largely for reasons of
practicality (such as one brother living in
Australia) I was the one who took the
decision to be tested as a potential donor
first.
I had the crucial blood test at Guy’s on
24 September 2008, the results of which
would show whether I was a compatible
blood group and, crucially, whether I was
a good tissue match. Tissue matching is
measured from 1/6 to 6/6 and we knew
that anything below 5/6 would cause
Just before Christmas 1997 he was told by complications because of Francis’s
the renal unit at Guy’s, where he had been antibodies.
a dialysis patient for some years, that they
I was a perfect tissue match
could give him a new transplant with
When my result came through it
another cadaver kidney. This was a
success and he returned home to embark confirmed I was a perfect 6/6 tissue
match.
on a more normal life than had been
possible for a decade. But cadaver kidneys Making the decision to proceed was easy,
have a limited life of often little more than I knew I could offer Francis the best
10 years. In late 2007 Guy’s confirmed that possible chance of improved health and
his kidney was deteriorating and that he
long life and I was conscious of the
had a maximum of two years before it
privations he had suffered since his youth.
ceased functioning.
Nonetheless, as a donor you are
voluntarily putting yourself on the line
Having had two transplants and with his
and introducing great turmoil into your
long history of ill-health and associated
life.
medication, Francis was an unusual
patient. Most significantly, he had built up During the period of four months that I
powerful antibodies in his blood so a new underwent different tests my main worry
kidney had to be very well matched. And was that some problem would prevent
that is where I came in. We are a family of me from being a donor. The operation
was originally scheduled for late January
five brothers, Francis the youngest, me
but queries thrown up by my tests
caused a delay until 20 March. During
the delay Francis’s kidney function
deteriorated unexpectedly fast and he
had been forced to start dialysis.
On the operation day I was told by my
surgeon that they had found I had a
hernia, which he would deal with at the
same time as removing my kidney, the
whole operation to be performed
laparoscopically (key-hole surgery).
Perhaps because of the impact of the
hernia as well, when I first came round
from the anaesthetic I was in
considerable pain and it was a real
shock. But after six days I was
discharged from hospital to recuperate
at home and was amazed at the
What is lupus?
Also known as systemic lupus
erythematosus or SLE, lupus is a serious
inflammatory disease that affects the
skin, joints and internal organs, and in
severe cases can be fatal. There is no
cure and people with the condition may
have to take medication for the rest of
their lives. However, current drugs are
not particularly effective and many
sufferers have a poor quality of life.
Arthritis Today 13
QUALITY BRANDED TROUSERS AT
noticeable rate of my recovery during
the weeks that followed.
For Francis, the fact that the kidney
started working straight away had the
immediate effect of making him feel
better, even while he was recovering
from the operation. It was amazing to
watch and I do not think any of us had
been prepared for the transformation
of his daily quality of life which it
brought about and which continues
today, more than two years later.
Looking for the genes that
may cause lupus
Arthritis Research UK is currently running
the UK’s biggest-ever study to discover the
genes that cause lupus. And the scientist
behind the study believes it could
considerably advance understanding of the
disease and could also result in a genetic
test predicting who is most likely to
develop the condition.
Professor Tim Vyse and his team at King’s
College London are taking advantage of
the latest advances in gene technology to
analyse DNA samples from 5,000 people
with lupus from all over the UK, Europe and
Canada, in order to identify the full set of
genes that predispose them to getting the
condition.
They are being funded by a grant of £1.7
million from Arthritis Research UK through
the generosity of a private donor.
As well as finding out how many genes
contribute to the development of lupus, the
team also wants to establish whether genes
that cause the condition also influence the
severity or type of lupus and whether
14
Living donation is the key
feature to future success
Living donation has revolutionised kidney
transplants and any renal surgeon or
physician will tell you that it is the key to
future success. The first successful living
Sections of this article originally
donor transplant was carried out between
appeared
in the Mail on Sunday in 2009.
two identical twins in 1954. But thereafter
a lack of effective immuno-suppression
Arthritis Research UK currently
drugs (which prevent rejection of the
spends £6.5 million on research into
transplanted kidney) meant that the few
lupus, including lupus nephritis.
•
•
particular organs of
the body such as
the heart or kidneys
are likely to be
involved. In the
future a genetic test
could become
available to help
speed up the
diagnosis of lupus
in patients with
suspected autoimmune,
inflammatory forms
of arthritis.
among others, has already identified some
of the genes implicated.
“However, we have only identified the ‘tip
of the lupus genetic iceberg’, as the studies
conducted so far have not been large
enough. Our study is more than twice as
big as all the other studies combined, so we
are hoping that we will be able come up
with some really useful results in order to
identify the ‘how and why’ of lupus.”
Professor Tim Vyse
In the short term the main aim is to
discover many more genes that cause the
disease. The team will then go on to
determine how these genes increase the
risk of developing lupus.
Professor Vyse, professor of molecular
medicine at King’s College London, said:
“There is a significant risk to the
development of lupus; for example, the
brother or sister of an affected person is
over 29 times more likely to develop it than
the rest of the population. Our group,
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down the genes responsible could also
help speed up this process.”
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The team expects to produce the first set of
research papers of early results later this
year.
Professor Alan Silman, medical director of
Arthritis Research UK, said the charity had
high hopes of Professor Vyse’s genetic
research: “The drugs for lupus are not as
effective as we would like. Discovering how
many genes contribute to disease
development is crucial so that we can work
to produce new therapies.
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The brothers: Francis Plumptre on George’s shoulders in 1965
times the operation was tried again
most ended in failure. Not until the
introduction in 1983 of the first reliable
immuno-suppression drug called
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success made possible, and since then
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Michelle Harrison
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for the changes.
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We cover topics relating to types of
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Michelle Harrison, information
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What was the rationale for
updating the booklets?
We had to change all the booklets after
the charity rebranded in March 2010, so
the content was reviewed at the same
time to bring them all up to date. All the
text was rewritten as part of the
rebranding process, and they were given
a more contemporary look and style in
line with our new brand. We also wanted
to add some new elements to make it
easy for patients to read, understand and
•
•
•
We conducted some face-to-face
research with patients, which supported
the need for high-quality arthritis
information that is relevant,
They are full colour and full-colour
straightforward and authoritative.
photography has been used for the
Patients identified the need to strike a
first time, including pictures of
balance between medical texts which
symptoms and 3D illustrations, to
can be weighty, technical and academic,
help explain things better.
and leaflets which could be seen as too
They have changed format to A5 so
flimsy and poorly produced, making
they are easier to handle and the
patients feel they were not taken
information can be displayed in a
seriously. We think we’ve got the balance
much more effective way.
right, and that our booklets are
The content and headings have been authoritative and based on evidence of
standardised, following an easy to
best practice but are also easy to read.
understand Q&A format, to help make Medical professionals have also been
it easier to find the relevant
involved in the rewriting and reviewing of
information.
all the text to ensure we have the latest
They all include an at-a-glance section information in the booklets.
for easy reference, which also makes
the most important points easily
digestible.
How are the booklets
produced?
• Key messages and important points
are highlighted throughout the
booklets.
The booklets go through a rigorous
process, which includes review by a
number of medical professionals Arthritis Today 17
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How did you get over the perennial
problem of balance; some people think
they’re too upbeat, others that they
overplay the severity of the condition.
This is a very difficult thing to get right, but it is important for us
to show what can be possible and to remain optimistic, while
also pointing out the serious nature of some of the conditions.
The content focuses on covering all the possibilities and
options, to give the reader all the essential initial information.
The hope is that they can then search for more information on
areas they want to or consult with their healthcare team.
FREEPHONE:
at Home
including doctors, nurses, physiotherapists, occupational
therapists and surgeons to ensure quality, currency and
medical accuracy. They are also reviewed by members of the
public and any relevant societies, and the production is
overseen by a medical expert in the field. They are then
re-written by an editor to make it easy for people to
understand, and the actual proofs are tested again by members
of the public to ensure the text and design both work.
The PDFs are being uploaded as we speak and the new versions
are being adapted for the website and will be posted as they
are completed over the next few weeks. We are also reviewing
the way they are represented on the website so they are as
user-friendly and accessible as possible.
Why have line drawings been replaced
by photos?
The line drawings have been replaced by photos when a photo
is more descriptive, although line drawings do still appear
where we feel it is easier to understand. The introduction of the
photos has helped to create a more contemporary feel overall
and has helped to bring them to life.
Have you had any feedback so far?
So far we have received some really great feedback. We act on
all feedback we receive, whether from the public or health
professionals, to ensure it is as good as it can be, so we are
happy to hear your thoughts, good or bad.
Are there plans for any new titles?
We want to continue to work on the range to provide the best
information source we can to patients and the public and
welcome any suggestions. We are also working on some
shorter articles that will start to appear on our website over the
coming months, giving information on topics we are being
asked about.
The new booklets are available to order or download at
•www.arthritisresearchuk.org
by email at enquiries@
arthritisresearchuk.org, telephone at 0300 790 0400 or by
post to Arthritis Research UK, PO Box 177, Chesterfield,
Derbyshire, S41 7TQ.
Back to basics
A study looking into ways of improving the outcome of back
surgery has thrown up some unexpected findings.
Jane Tadman reports.
Can post-operative exercise and
rehabilitation help people to recover
from back surgery? Or is up-to-date
information and advice just as good?
Those were the questions posed by
Professor Alison McGregor when she
embarked on an Arthritis Research
UK-funded clinical trial involving more
than 300 patients with back pain.
Although most people with back pain
don’t need surgery, for a small number it
can help. An operation called a
discectomy relieves the pressure on the
spinal cord caused by a prolapsed disc,
and can be effective in reducing sciatica
in up to 90 per cent of cases.
A second small group of usually older
people whose back pain is due to spinal
stenosis – narrowing of the space around
the nerves in the spinal cord – can expect
a 50 per cent improvement from an
operation known as laminectomy or
decompression surgery.
Post-operative care was
patchy
Previous research had shown that
post-operative care was patchy, minimal
and varied from surgeon to surgeon, and
Professor McGregor’s reasoning at the
time of setting up the clinical trial was
logical. By the time most people with low
back pain undergo surgery, their spinal
muscles are seriously de-conditioned
because they will probably have been in
severe pain and unable to have done
much exercise for some time, so it made
perfect sense to assume that a rigorous
regime of exercise starting six weeks to
three months after surgery would help
them regain some fitness and more
mobility.
It was equally intuitive to assume that
giving patients a booklet based on
clinical evidence and lots of good
common sense about keeping active
– stressing that activity will not harm the
back but actually heal it – would also
have a positive benefit.
Neither approach makes
any difference
However, Professor McGregor, professor
of musculoskeletal biodynamics at
Imperial College London, has found
that in fact neither approach makes any
difference to the outcome of surgery in
terms of functional disability.
As she prepares to publish the results of
the six-year-trial in the journal Spine
Professor McGregor is philosophical,
believing that although it didn’t
produce the outcome she’d expected,
the study threw up a lot of interesting
information that may help to improve
the way that patients are treated after
back surgery.
“We found that there was a huge
discrepancy between expectation and
what actually happened,” says Professor
McGregor. “There was also a correlation
between what you achieve and what
you expect – if people had a higher
expectation they got a better outcome
because they tended to work harder
at it.”
In general terms, people who had
undergone discectomy surgery were
happier and more satisfied with the
outcome than those patients having
laminectomy.
One important finding was that most
patients’ condition didn’t improve
much beyond three months after
surgery – which was when the
rehabilitation classes usually started. So
it may be that rehab might have worked
better had it begun sooner after
surgery. Inevitably some patients
remained nervous of exercising after
the surgery because they feared it
would damage their back in some way,
which may go some way to explaining
the fact that 41 per cent of those in the
rehab class didn’t attend a single
session.
Arthritis Today 19
Negative experiences
The patients’ experience
Patients reported a number of negatives
about their experiences of spinal surgery.
These included a lack of information and
advice, dissatisfaction with GPs in terms
of diagnosis and management,
disappointment with the outcome of the
surgery and a perceived lack of respect
by their surgeon.
Colin Scott: in the rehabilitation
and booklet group
Colin Scott had spent ten months off
work in extreme pain before having a
“Many people consented to surgery
because they were desperate, but they
didn’t know what to expect and that
rehabilitation after surgery was not
routinely provided. Many felt isolated,”
says Alison McGregor. “Some people
found that unless they really pushed for
answers they wouldn’t get them and that
there was a real need to be assertive.”
She is now planning future research
looking at ways in which the NHS can
provide better care pathways for people
who have spinal surgery, and to receive
better information in different formats.
discectomy two years ago, so after the
operation he was determined to do
everything he could to get back to a
normal life. His operation was a complete
success and he was up and about after 24
hours.
A steward with British Airways, now aged
53, Colin attended all but one of the
rehab classes after his operation and
found them very useful. In fact, he still
does the exercises now; largely pilatestype exercise to strengthen the tops of
the legs and buttocks.
“I do understand that other people are
not as diligent but I had had a very
painful year or so and I was at the stage
where there was no way I was going
back,” says Colin, who was back at work
full-time within three weeks of surgery. “I
was determined to take advantage of
everything.
Colin Scott
“I didn’t find the back booklet as much
use. I’m the sort of person who if you
show me how to do something I will get
it and then go and do it on my own.
Sometimes people need to be
encouraged but I am too young to sit
down and not do anything; I wanted to
get back to fitness.”
What Colin also found immensely helpful
was the fact that from start he saw the
same surgeon who operated on him all
the way through.
He adds: “She suggested that I did the
exercises and I felt that really boosted me.
I was very lucky; it made a big difference.
I was very happy with what happened to
me. I had fantastic treatment with all the
rehab, and, at the end of it, it meant I
have got my life back. I can go walking
with the dog, go swimming, go to the
gym again. It’s made a massive difference
to me.”
The Arthritis Research UK FASTER trial
More than 300 patients from seven hospitals in London took part in the £260,000
study, which compared the effectiveness of a rehabilitation programme and an
education booklet for the post-operative management of people having
discectomy or laminectomy.
Patients in the rehab group had a programme of supervised exercises, including
general aerobic fitness work and stretching and strengthening exercises for the
back, leg and abdominal muscles, twice a week for an hour and starting six
weeks to three months after surgery. Patients in the booklet group were handed
the educational booklet – based on evidence-based messages and advices – on
discharge from hospital.
Some groups had both the rehab and the booklet, and each group was also
compared with the “usual care”; which means whatever post-operative care
individual surgeons normally employ – which might be nothing.
20 Arthritis Today
Steve Holdsworth: the “usual
care” group
Forty-seven-year-old Steve’s experience
of the aftermath of back surgery was not
a particularly positive one. He was in the
“usual care” arm of the trial. This meant
he was not given any active treatment, so
received no rehab, nor was he given the
back surgery booklet. “Usual care” in his
case meant no post-operative treatment
at all.
Steve had had acute episodes of back
pain on and off for years but two months
before surgery he found he couldn’t
stand up. He was in such agony he was
Questions
and
answers
Mary Waddington
Steve Holdsworth
taken to A&E for treatment, and on discharge he was advised to
have an immediate MRI scan.
This revealed that he had extreme damage to his cauda equina
nerve which had caused irreparable damage, leaving him with
distressing symptoms, including incontinence and sexual
dysfunction.
Although the decompression surgery he underwent at Charing
Cross Hospital was a “success”, in that it reduced the pressure
on his spinal cord and stopped the pain, the damage had been
done.
“I was in hospital for two nights and although I couldn’t fault
the in-house care, after I was discharged I was very much left to
my own devices, which I was very disappointed with,” says
Steve, who works as a fundraising manager for a small
homelessness charity.
“Because the surgery was deemed a success as far as they were
concerned, I was off the radar. But because the damage I had to
my cauda equina nerve is so rare there wasn’t any sort of
support group for it, and because the symptoms were nothing
to do with my back, no-one was interested. It would have really
helped to have had a bit of a more joined-up approach from
the health service.”
Steve went back to work within two weeks of surgery and
although he has ongoing problems, he no longer has back
pain.
Mary Waddington: in the rehabilitation group
Mary’s decompression surgery two years ago was deemed a
success and after ten months of sleeping just two hours a night
because of intense pain, surgery to release the sciatica in her
leg gave her much-needed relief. But it proved to be short-lived
and she has had to undergo further surgery to release the
femoral nerve in her leg as unpleasant sensations gradually
crept back.
Mary, aged 62, who works as an extra in films and TV, found the
rehab programme very helpful. “I was extremely grateful to
have physiotherapy after the operation and I benefited from
one-to-one therapy, because I was in the trial, but the NHS can’t
run to that sort of provision,” she says.
Mary attended every rehab class at Charing Cross Hospital and
tried to carry on exercising at home, but found away from the
group encouragement her motivation waned.
Although back at work, she has had to adapt to a less active
lifestyle: she has to lie down at least once a day and still has to
have steroid injections for her back pain.
with Dr Philip Helliwell
I’m 63 and have suffered from osteoarthritis for around
10 years. I’ve recently been diagnosed with chronic
inflammatory arthritis, at which time my consultant also used
the words rheumatoid arthritis. Although the blood markers
were negative, which he said applied to around 30 per cent
of sufferers, an MRI showed inflammation and degeneration
around the joints of my hands. He’s prescribed methotrexate
and folic acid. Are these conditions the same? I’d like to refer
to my condition correctly.
Nigel Jefferys, Horsham, East Sussex
Nigel, sometimes the situation is not “black and
white”. Of course people can (unfortunately) get
two different forms of arthritis. If possible we like to keep
the diagnoses made for any one person to a minimum.
This is known as Occams Razor. William of Ockham was a
logician and philosopher who introduced the “law of
parsimony”. Essentially this suggests: “why use two
explanations when one will do”. So, if one diagnosis can
explain all your symptoms then this is the preferred
assumption, and it does simplify treatment. However,
having said all that, people with osteoarthritis can
develop other types of arthritis. Chronic inflammatory
arthritis is just a generic term to describe the condition
and how it differs from osteoarthritis, and in such cases
drugs like methotrexate are used. Rheumatoid arthritis is
one form of chronic inflammatory arthritis but there are
other types, such as psoriatic arthritis and gout. If it is
not clear exactly what the underlying condition is then
rheumatologists will often just call it chronic
inflammatory arthritis.
I am a 73-year-old woman, diagnosed with fibromyalgia
20 years ago. I have generally been able to manage this,
and take no medication other than vitamin supplements. My
GP has begun treating me for hypertension. As I have recently
been diagnosed with Sicca syndrome (and am awaiting the
results of a test for Sjögren’s) this provoked a major flare-up
of the fibromyalgia. I wonder if other fibromyalgia patients
experience difficulties in adapting to hypertensive drugs?
June Tucker, Cheltenham, Gloucestershire
Arthritis Today 21
PHOTO: DR P. MARAZZI/SCIENCE PHOTO LIBRARY
I don’t think this is a problem confined to fibromyalgia
patients. People often take several anti-hypertensive
drugs before they find one that suits them. The side-effects
can be quite strange and cover a lot of symptoms.
Fibromyalgia can be associated with dry eyes and mouth
(Sicca symptoms) both as an associated symptom and as a
side-effect of drugs used to treat the disease, such as
amitriptyline. Many people on amitriptyline (this class of
drugs are known as tricyclics) complain of dryness.
Is there any connection between hypermobility in joints
and arthritis? I am 43, have suffered knee pain for years,
have also herniated two discs in the last 10 years, and taking
into consideration my age this seems to be a lot of problems for
someone my age. Saying that, I did get knocked down by a car
in 1985 and I was told I would get arthritis early on in age.
I would appreciate your opinion please.
Sue Stafford, Halesowen, West Midlands
Professor Howard Bird, who has just recently retired
after a long career working as a rheumatologist in
Leeds, spent much of his early career looking at the
relationship between hypermobility (bendy joints) and
arthritis. He found that hypermobility predisposed people
to a number of rheumatic complaints, one of which was a
tendency to develop osteoarthritis at a younger age.
Although the term hypermobility covers a “mixed bag” of
diagnoses, those people who inherit the tendency can get
other problems such as varicose veins, piles and slipped
discs. This may be because the “tissue scaffold” is weaker
than normal. Although people with generalised
hypermobility are born like that it, is possible to acquire
hypermobility in just one or two joints with use (or abuse if
you like). There is no doubt that hypermobility can convey
advantages in certain activities such as ballet, music and
gymnastics, but it is a two-edged sword and it requires
careful management to avoid future problems.
In a letter to Arthritis Today (153) a retired consultant
surgeon states that she had a meniscectomy “which of
course resulted in osteoarthritis of that knee”. I would like to
know the reason for this. I had a menisectomy, as part of an
arthroscopic procedure three years ago, as I was already
suffering from osteoarthritis of the knee. Despite extensive
treatment the arthritis has now become, in the words of my
consultant, “end stage” and I shall be having a knee
replacement later in the year. In the light of the abovementioned letter, I am now wondering if this procedure caused
the arthritis to become worse, or did the condition deteriorate
over the passage of time (my general assumption).
Linda Carlisle, Nuneaton, Warwickshire
Good question. Some years ago it was found that
having a menisectomy (removal of the knee menisci,
or cartilages) predisposed to osteoarthritis in that joint in
later years. Not surprisingly, a tendency to develop
osteoarthritis in other joints increased that risk. Now, that
study was done when menisectomies were achieved by
opening the knee joint and the procedure was much more
extensive than today’s keyhole approach, so it may not
now be the case that osteoarthritis is a certain
consequence of this procedure. You do have to remember,
of course, that the reason for the torn meniscus (cartilage)
may also be the reason for the later development of
22 Arthritis Today
Focus on Newcastle
The search
for a cure
Focus on
Newcastle
As Newcastle Musculoskeletal Research Group
celebrates its new European Centre of Excellence
status, Arthritis Today provides a research update from Tyneside where
Arthritis Research UK currently invests £6.5 million.
The burning question on the lips of
everyone with arthritis is: where is the
next “cure” going to come from?
Osteoarthritis of the knee as seen on an x-ray
osteoarthritis, that is injury to the knee. Nowadays, with
the keyhole approach many people with torn menisci are
found to already have established osteoarthritis and the
arthroscopy (and menisectomy) is just one stage on the
way to having a knee replacement. One will follow the
other but it may be many years in between the procedures.
I’m 39 and went through an early menopause. I have the
early stages of brittle bone disease and have just been told
I have osteoarthritis in the lower back and both hips. For about
20 years I have been a power walker. My GP, however, tells me
to stop walking, especially on roads as it was very bad for my
back and hips. I now only do about two to three miles three
times a week. I find it a little sore when on the road but that
night and the next day I’m in severe pain and feel my joints are
very stiff to move. Should I give up or still do it?
Christine Skelton, Drumquin, Omagh, Co Tyrone
This is quite a dilemma. On the one hand you have
osteoarthritis of the back and hips and power walking
on hard surfaces is likely to aggravate it. On the other hand
you have early osteoporosis and weight bearing exercise is
recommended to delay further bone loss! I think you have
to find a balance somewhere in between. Exercise has
other benefits on the cardiovascular system and generally
makes you feel good, so I would not like to discourage you
from this. Have you tried painkillers or, dare I say it, antiinflammatory drugs to enable you to continue your
exercise, perhaps less vigorously?
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 enquiries@arthritisresearchuk.org
The discovery of anti-TNF therapy by
scientists at Arthritis Research UK’s
Kennedy Institute more than a decade
ago led to a worldwide revolution in
the way that inflammatory arthritis was
treated. Patients who once had few
options beyond methotrexate were
suddenly presented with a dazzling
array of so-called biologic therapies
that if not a cure, then enabled many
of them to live near-normal lives.
But for the 30 per cent of people in
whom anti-TNF and other biologic
therapies don’t work, or can’t be
tolerated, new approaches are needed.
And for sufferers of the most common
type of arthritis, osteoarthritis, a
side-effect-free form of pain relief or
treatment to slow disease progression
would be a welcome breakthrough.
A cure is generally agreed to be way off,
if it happens at all.
Research… aims to induce
remission
Research that aims to improve
treatments and possibly edge nearer to
a cure is going on in a number of
universities and medical schools, largely
funded by Arthritis Research UK. In
particular, this is research that aims to
induce remission in people with early
inflammatory arthritis by using
aggressive early biologic treatment,
and identifying those people in whom Professor Drew Rowan: “Understanding the disease process in arthritis is
laborious, but we believe this knowledge will ultimately bear fruit.”
this approach would be the most
Arthritis Today 23
beneficial so that they can be targeted
accordingly.
better outcome, to develop new
therapies to switch off the disease
(tolerogenic therapies), and
experimenting with new cellular
therapies,” explains professor of clinical
rheumatology John Isaacs, whose
specific field of experience and
expertise is rheumatoid arthritis and
therapeutic tolerance.
At Newcastle University, researchers at
the Musculoskeletal Research Group are
involved in work which they are
confident will lead to if not a cure, then
certainly better treatment for
rheumatoid arthritis and osteoarthritis*,
and are taking different approaches
which could have significant outcomes
for patients.
*Future editions of Arthritis Today
will provide updates of results of the
£2.2m osteoarthritis genome
screening programme, arcOGEN,
and also news of exciting new
initiatives in tissue engineering for
osteoarthritis in Newcastle.
Scientists and clinicians involved in
arthritis research at Newcastle
University and the Freeman Hospital
celebrated two prestigious accolades
that confirm their status as leaders in
their field.
The Musculoskeletal Research Group
comprises a large group of clinicians
and scientists working together to
improve the diagnosis, management
and understanding of arthritic
diseases. Their focus is a collaborative
mix of basic science and clinical
research projects aimed at addressing
the problems of arthritis and agerelated musculoskeletal diseases,
alongside other specialist areas in
paediatric rheumatology and
education research.
EULAR, a European-wide scientific
body whose chief aim is to stimulate
research into arthritis and other
24 Arthritis Today
• development of novel, experimental
therapies for rheumatoid arthritis
(Professor John Isaacs)
• pioneering haematologic stem cell transplantation for
scleroderma and other conditions (Professor Jaap van
Laar).
• b
asic and translational research in
osteoarthritis (Dean of Research
Professor Tim Cawston and Professor
Drew Rowan)
The EULAR award, together with recognition from Arthritis
Research UK, was presented at a special ceremony at the
university in May and attended by local dignitaries,
researchers, fundraisers and patients.
• leading a major genome screening
project arcOGEN, aiming to find the
genes that cause osteoarthritis
(Professor John Loughlin)
Professor Alan Silman, medical director of Arthritis Research
UK, congratulated the group, telling his audience that they
A real breakthrough
Plaudits for arthritis
research in Newcastle
The Musculoskeletal Research Group
in the Faculty of Medical Sciences was
awarded “Centre of Excellence” status
by the European League Against
Rheumatism (EULAR). The team was
also recognised by Arthritis Research
UK for its “outstanding contribution”
to the charity in its 75th anniversary.
Neither has yet completed, but John
Isaacs is hopeful that progress will have
been made by the end of this year. One
or both could produce a real
breakthrough in treating rheumatoid
white blood cells and convert them into
cells known as tolerogenic dendritic
cells: cells which suppress immune
system activity. They will then be
In the first study, he and his team aim to
injected back into the patient’s knee,
develop a new cellular therapy that
and be followed up for three months.
actually switches off a patient’s
The hope is that the symptoms of
unwanted immune responses without
rheumatoid arthritis will be effectively
suppressing protective immunity,
suppressed.
which can leave people open to
In the second study, co-funded by
infections with other therapies.
GlaxoSmithKline, the team has just
Similar techniques have been used in
started treating 40 rheumatoid arthritis
cancer research (although in this
patients with an anti-CD3 monoclonal
situation the cells are designed to boost antibody therapy called otelixizumab
the anti-tumour immune response) but that could “switch off” the disease
this will be the first time it has been
process, as part of a small phase 1 trial.
adapted to rheumatoid arthritis and
tested on patients. Twelve volunteers
“Could work as well as
from the city’s Freeman Hospital will
anti-TNF but will have a
undergo the therapy as part of a pilot,
which could then lead on to larger
more sustained effect”
trials.
The team hopes to establish that the
drug – which has been trialled in type 1
In a nutshell the team aims to
chemically manipulate a patient’s own diabetes – will be proven to be both
As regular readers of Arthritis Today will
be aware, Professor Isaacs has been
involved in setting up two exciting,
experimental trials of potential new
therapies for rheumatoid arthritis, both
funded by Arthritis Research UK, and
which attracted national media
coverage when they were announced.
“What we’re trying to do in Newcastle
for rheumatoid arthritis patients is
threefold – to improve the diagnosis
and targeting of patients so they have a
arthritis, which is caused by the body’s
immune system attacking joints,
leading to inflammation.
• key aspects of research into arthritis
affecting children and teenagers
(Professor Helen Foster)
Professor John Isaacs
musculoskeletal conditions, made the
award to Newcastle on the basis of its
impressive publications record in top
academic journals. It is one of only six
centres in the UK to have such status.
Aberdeen and Glasgow Universities were
also awarded Centre of Excellence status
from EULAR this year.
safe and effective at specific doses.
Patients will be given increasingly
bigger doses as the trial progresses.
Professor Isaacs anticipates that
otelixizumab could work as well as
anti-TNF, but will have a more sustained
effect from just a one-off course of
treatment.
Drew Rowan, professor of molecular
rheumatology, a basic scientist who is
working on related basic and
translational research and in particular
trying to understand inflammation and
joint destruction in osteoarthritis,
sounded a word of caution when
talking about possible cures for that
disease: “What we do in the laboratory
today may take five to ten years before
it starts to turn into potential treatment
for patients,” he said.
“Understanding the disease process in
arthritis is laborious, but we believe this
knowledge will ultimately bear fruit.”
had made a phenomenal contribution to advancing the
cause that the charity stood for, namely to relieve the
suffering of people with arthritis. “We would not achieve
our goals without people like you,” he added.
• e
ducational research (Dr David
Walker and Dr Lesley Kay)
Professor Silman also warmly praised local fundraisers who
attended the event from Yorkshire, Northumberland and
Cumbria. “You are the engine room of this charity, and
without your commitment to the cause none of this
research would have been possible,” he said.
Arthritis Research UK, which currently
funds more than £6.5m into research in
Newcastle, said its honouring of the
group was an acknowledgement of its
all-round outstanding contribution to
the charity over a number of years which
has seen them emerge as national
Dr Fraser Birell, a rheumatologist in
leaders in a number of areas, for
Newcastle, chats to a local branch
example:
member
Professor John Isaacs said: “These achievements provide a
wonderful endorsement of the hard work performed by
numerous individuals over the past 15 years, as well as to
the integration of the teams in the laboratory and in the
clinic. It is a tough challenge to achieve international
recognition in medical science but we deserve to be where
we are.
“It is also fun to work at the ‘cutting edge’ and we aim to
maintain our status by continuing to make important
discoveries that impact on the management of
Professor Alan Silman at the unveiling of the EULAR plaque musculoskeletal disease.”
Arthritis Today 25
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Dr Jane Goodall, Department of
Medicine, University of Cambridge,
Cambridge; targeting an important
controller of the immune system,
CHOP, for the treatment of
inflammatory arthritis, £800,263,
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Dr Emma Derrett-Smith, Centre for
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26 Arthritis Today
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Project grants
Professor Andrew Rowan, Newcastle
University, Musculoskeletal Research
Group, Newcastle-upon-Tyne; tribbles:
a new target for switching off joint
destruction? £159,061, 24 months.
Dr James Fisher, University of
Birmingham, College of Life and
Environmental Sciences, Birmingham;
how does increased activity in the
sympathetic nerves play a role in
rheumatoid arthritis? £163,678,
36 months.
Dr Susanna Fagerholm, University of
Dundee, Division of Medical Sciences,
Dundee; unravelling the mechanisms
behind lupus disease: how do
changes in the ITGAM gene add to
the risk? £207,196, 36 months.
Dr Tina Chowdhury, Queen Mary
University of London, School of
Engineering & Materials, London; can
we use exercise therapy to treat
osteoarthritis? £90,642, 24 months.
Equipment grant
Professor Costantino Pitzalis, Queen
Mary University of London, Centre for
Experimental Medicine & Rheumatology, London; using state of the art
equipment to improve the study of
joint tissues, £53,977, 12 months.
Pilot clinical studies
Dr Nicola Crabtree, Birmingham
Children’s Hospital NHS Trust, Paediatric
Professor Andrew Cope, King’s
College London, Academic Department Endocrinology, Birmingham;
improving the clinical care of
of Rheumatology, London; how does
the protein Lyp control the way that children with bone disease: the UK
Children’s Bone Density Study,
white blood cells behave? £249,256,
£28,046, 18 months.
36 months.
Dr Francesco Dell’Accio, Queen Mary
University of London, Centre for
Experimental Medicine &
Rheumatology, London; can we use
nature’s own repair tools to stop
cartilage breakdown in
osteoarthritis? £192,489, 36 months.
Dr Stefano Fedele, University College
London, Eastman Dental Institute,
London; a ‘salivary pacemaker’ to
treat dry mouth: the LEONIDAS
study, £29,981, 12 months.
Barbara Ansell
fellowship in paediatric
rheumatology
Dr Lang Yang, University of Sheffield,
School of Medicine & Biomedical
Sciences, Sheffield; a multidisciplinary approach to monitor the Mrs Maureen Todd, University of
effectiveness of osteoporosis
Glasgow, Institute of Child Health,
treatment, £88,343, 18 months.
Glasgow; study of the prevalence of
musculoskeletal abnormalities,
Professor Cosimo De Bari, University
particularly arthritis, in children with
of Aberdeen, Division of Applied
Down’s syndrome, £46,214, 12 months.
Medicine, Aberdeen; ‘bad’ stem cells:
are they responsible for rheumatoid
arthritis? £201,718, 36 months.
Dr Andrew Hall, Laboratory Sciences,
School of Biomedical Sciences,
Edinburgh; a new ‘solution’ to protect
cartilage cells during surgery,
£98,205, 24 months.
Dr Frances Hall, University of
Cambridge, Dept of Medicine,
Cambridge; new insights into immune Clinician scientist
cell abnormalities in patients with
fellowship
Sjögren’s syndrome and their
response to treatment, £43,400,
Professor Christian Mallen, Keele
24 months.
University, Arthritis Research UK
Primary Care Centre, Keele; improving
Dr Robert van ‘t Hof, University of
the management of musculoskeletal
Edinburgh, Rheumatic Diseases Unit,
disorders in general practice: what
Edinburgh; a new approach for
restoring bone volume and strength, opportunities are we missing?
£411,389, 36 months.
£219,764, 36 months.
Mr George Ashcroft, Woodend
Hospital, Dept of Orthopaedic Surgery,
Aberdeen; fast field-cycling: a new
imaging method to measure disease
progression in patients with
osteoarthritis, £190,832, 24 months.
Dr Ian Scott, King’s College London,
Guy’s & St Thomas’ Hospital Trust,
Rheumatology; combining risk factors
to develop a new way to predict the
risk of developing rheumatoid
arthritis, £238,735, 36 months.
Arthritis Today 27
The
hints
box
Ayurvedic medicine helped
my rheumatoid arthritis
I was diagnosed with rheumatoid arthritis
12 years ago at the age of 28 and over the
last couple of years my condition was
getting worse and I was experiencing
flare-ups on a more regular basis. In 2009
I visited the Yoga Show in London, where
I attended an Ayurveda lecture. I was so
inspired by the lecture that I decided to
have an Ayurvedic consultation and after
my first set of five massage-based
therapies, herbal enemas, and Ayurvedic
herbal medication I was amazed and
delighted at how my body had improved.
Throughout this period, I was very careful
with my Ayurvedic diet, yoga (postures,
breathing techniques, meditation) and
other lifestyle instructions.
Following the second set of treatments,
my rheumatoid arthritis is now 100 per
cent better. Occasionally, due to the cold
damp weather or if there is a change in
routine, my arthritis and bowels can be
disturbed; however, this is bought back
into control simply by itself by my
Ayurvedic diet and the instructions given
by Vishal Kohli, my Ayurvedic consultant.
I feel very blessed and fortunate to have
been guided towards Ayurveda Retreat.
I am now a changed person on a journey
to a healthier, more peaceful and happier
life. For further information on Ayurveda
Retreat please visit:
www.ayurveda-retreat.co.uk
Jagruti Mistry, Grays, Essex
Editor’s note: Ayurvedic medicine is a system
of traditional medicine originating in India.
A herbal Ayurvedic preparation called
Articulin-F scored two out of five for
effectiveness in osteoarthritis in Arthritis
Research UK’s complementary medicines
report.
28 Arthritis Today
I’m looking forward to
buying comfortable, stylish
shoes!
Apricots ease the problem
of constipation
There is a very simple and easy way of
solving the problem of constipation when
I was so pleased to read your article about
taking certain painkillers – eat dried
designing better shoes for arthritis
apricots. I have to have co-dydramol
sufferers. At last someone has taken notice spread throughout the day without any
of an obscure side-effect of rheumatoid
problems and my bowels open every day
arthritis. I have had the condition for many without any problem so try it for
years and have always had difficulty
yourselves! I eat two to four apricots a day.
finding comfortable, smart shoes. So many You can safely eat more but remember
of the wider shoes that you can buy look
they do act as a diuretic so experiment to
very frumpy and don’t have the support
see what suits you. But they do work – so
persevere! I also have a high fibre diet
that is needed. I find that Hotter Shoes,
including prunes and bran.
though comfortable, do not really fit
properly. Rheumatoid arthritis sufferers
Gwynette Kern, Shrewsbury,
tend to have pain in the ball of their feet
Shropshire
and toes that become deformed. If I order
a wide fitting, the whole shoe is wide and
therefore does not fit at the heel, which in
my case is normal width. Wider shoes are
perfect for people with swollen feet, but
not for rheumatoid toes. When I walk it is
like walking on pebbles, so I need very
thick, cushioned soles, but not floppy ones
as they don’t support enough. It is hard
even to buy a pair of supportive slippers. I
also have a particular problem, in that my
right foot has been operated on for
hammer toes and is therefore a different
shape from my left. While this made my
foot straighter it didn’t actually stop the
pain!
Thank you to all of the team who did this
research; I look forward to one day being
able to buy elegant, but comfortable
shoes.
Sally Smith, Calne, Wiltshire
Don’t slouch – sit straight!
For all the current and future treatments
for arthritic problems, there are still some
very simple rules we arthritics should be
observing from the outset. The first two
are personally relevant:
• However good the armchair, slouching
will, over time, result in a curved spine
and damaged discs…you should see
my MRI.
• Had I religiously carried out the
exercises for good hand structure I
would not now have ‘fly away’ fingers.
I do wish there as an equally efficacious
alternative to diclofenac, which creates
real stomach problems for me and has
ruined my appetite.
William Elliott, Deal, Kent
My osteoarthritic knees
have improved thanks to
pilates
I have had osteoarthritis in both knees
for about 12 years. My greatest help
has been a well-qualified pilates
instructor. After a year attending
weekly classes my knees have
improved so much, my walking is
better, is less painful, feels good, and
I’m generally more mobile. Perhaps
this letter might prompt others to
think about this route.
Janet Breadmore, Almondbury,
Bristol, North Somerset
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 www.arthritisresearchuk.org
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you ask me to do this piece again in a few
years’ time.
Meet
the
experts
Dr Arthur Pratt and
Dr Philip Helliwell explain their
work in an ongoing series of
questions and answers.
Dr Philip Helliwell
What does your work involve?
I am foremost a clinician. This occupies
about half my time. The other half is
divided between clinical research and
teaching.
What do you hope or expect
to achieve as a result of your
Arthritis Research UK funding?
The charity is currently funding a number
of my projects. The main one, the TICOPA
(tight control in psoriatic arthritis) study is
the first study to examine different ways
of treating psoriatic arthritis with drug
therapy. A few years ago a similar study in
rheumatoid arthritis found that a more
aggressive approach to treatment gave
better results and it is hoped we can
show the same in psoriatic arthritis. We
don’t have much in the way of evidence
for the benefit of conventional drugs
(such as methotrexate and sulfasalazine)
in this disease but the TICOPA study
seems to be getting good results with
these drugs alone, without having
recourse to anti-TNF drugs. It should be
completed this year.
What do you do in a typical day?
I am out of bed at 5.15am with exercise in
mind! I run or cycle to and from work.
How long has Arthritis Research This helps clear my head after a hard day
at the office. A clinical day will consist of
UK been funding you?
outpatients and seeing patients on the
I have been supported by the charity,
ward, and lots and lots of paperwork. I
with grants and other support, for the last
may argue with an administrator or two,
25 years. My first Arthritis Research UK
discuss cases with colleagues and
grant came from the then Arthritis
harangue the junior staff. On research
Research Campaign as a clinical research
days there are always plenty of meetings
fellowship in 1985. Since then my grants
and the research clinic. If I can I will fit a
have covered both clinical and biorun in at lunchtime, but this is becoming
engineering studies in psoriatic arthritis
a rare event. It used to be said that
and foot disorders. In the last few years I
working with me “seriously improved the
have also received funding for educahealth” as successive PhD students were
tional projects which have supported the taken out for exercise at lunchtimes.
diploma in musculoskeletal medicine and
What is your greatest research
rheumatology for GPs that we organise
with Bradford University.
achievement?
rheumatology in Leeds. His main research
interests were bioengineering and
psoriatic arthritis and he passed his
enthusiasm on to me. I worked briefly for
him in the early 1970s and then returned
to his department in 1985 when general
practice lost its allure.
Do you ever think about how
your work can help people with
arthritis?
Well we now have patient representatives
who keep us focussed on this.
What would you do if you weren’t
a clinician/researcher?
I would have liked to have made a
profession out of sport but am/was
no-where near good enough for that. The
idea of writing appeals to me: they say
there is a good book in everyone. My
mother-in-law made a successful career
as a novelist after retiring so there is still
hope for me. The trouble is I don’t want
to retire.
About Philip
The garage is full of woodworking
equipment just waiting to be used.
Alongside this equipment are about eight
bicycles, also waiting for me to get on
them. The two don’t mix, in a mechanical
maintenance sort of way, so both lay idle.
If my body lets me I get out on the hills
with studded shoes and scant clothing.
Opera, especially Wagner, catches my
mood.
Philip Helliwell is a senior lecturer
•inDrrheumatology
at Chapel Allerton
Hospital in Leeds and a consultant
rheumatologist at St Luke’s Hospital in
Bradford. He is also Arthritis Today’s
resident doctor for many years.
definitely have rheumatoid arthritis, but
who look as though they may develop it;
we know that some of them will and
What does your work involve?
some of them won’t, and we give their
I am interested in looking for
illness the name “undifferentiated
“biomarkers” – measurable indicators of
arthritis.” As a result of the PhD project
biological processes which might help
that Arthritis Research UK funded, we
predict the development of rheumatoid
believe we may have identified a “gene
arthritis – in patients attending an early
signature” in the blood of undifferentiated
arthritis clinic. In so doing, biomarkers
may also teach us something new about arthritis patients which may help us to
what’s going wrong with those biological predict who will get rheumatoid arthritis.
processes in these individuals.
Together with my PhD supervisor,
Professor John Isaacs, I set about this task
by focussing on a particular type of blood
cell called the CD4+ T cell, which seems
to be of crucial importance in this
condition. In particular, I looked at the
pattern by which genes were either
“switched on” or “switched off” in these
cells amongst patients attending our
early arthritis clinic in Newcastle, seeking
a “gene signature” that predicted a
diagnosis of rheumatoid arthritis. Having
identified an interesting set of genes in
this regard, I’ve become interested in the
biological pathways that they seem to
indicate may be disrupted in early
rheumatoid arthritis, and whether or not
treatments that target such pathways
might work better in those patients in
whom the biomarker is most prominent.
Patients and their doctors know that
there is a bewildering array of different
drugs available for the treatment of the
condition these days. We hope that
biomarkers will one day allow us not only
to diagnose the condition sooner, but
also to pinpoint the particular drug that is
likely to work best for a particular patient.
How long has Arthritis Research
UK been funding you?
Arthritis Research UK awarded me
funding for a three year clinical research
fellowship project in 2007, and I’m
pleased to report that I have just been
awarded my PhD! As a springboard to a
career in rheumatology research, this
fellowship has been priceless, and I will
always remain grateful to Arthritis
Research UK for supporting me and my
project.
What’s the most important thing
you have found out in the past
12 months? And why?
From a bioengineering point of view, my
work on joint stiffness (which took five
years and gave me both an MD and a
PhD) was my best work but I find it is
That’s a hard one. Patients add a whole
largely forgotten now. However, being
new dimension to research and as a
able to measure the very symptom the
colleague said at a meeting in Borneo last patient complained of was a revelation to
year: “you’re bonkers if you don’t involve me, and them. It’s a pity we couldn’t do
your patients in your research.” The
the same for pain. From a clinical point of
outlook of consumers is not surprisingly
view, setting up the large international
very different from medics and it is useful study to develop new criteria for psoriatic
to see the approach to research from
arthritis was a landmark in this.
their point of view. Certainly, patients’
Why did you choose to do this
priorities are very different from the
work?
doctors’. Apart from that, I would really
liked to have said that I had found a cure I was mentored by Verna Wright, formerly
for arthritis but that will have to wait until Arthritis Research Campaign professor of
30 Arthritis Today
Dr Arthur Pratt
What’s the most important thing
you have found out in the past
12 months? And why?
What do you hope or expect
to achieve as a result of your
Arthritis Research UK funding?
arthritis, and by the variability with which
different patients’ disease subsequently
responds to different drugs. The
opportunity to ask – and, hopefully, find
answers to – important questions based
on the problems we face in our clinics is
what continues to draw me into clinical
science.
Do you ever think about how
your work can help people with
arthritis?
Anyone involved with arthritis research
will tell you that it’s not easy, and there
are naturally times when one’s motivation
My research career is at a very early stage,
wanes. At those times, thinking about the
and, first and foremost, I am very keen to
long-term goal of one’s work – which
confirm our findings – make sure that
must always involve improving people’s
they did not simply occur by chance. The
lives – can be the only thing that keeps
“vision” which arises from our work, and
one going.
which I share with many others, is that
one day it will be possible to use
What would you do if you weren’t
relatively simple tests early on in the
course of people’s arthritis, to diagnose
a clinician/researcher?
them more effectively and treat them
and their disease in a more “personalised” My first ambition (aged about five) was to
be a gardener – and these days my
way.
garden has reason to regret my
What do you do in a typical day? subsequent career choices.
Having completed my Arthritis Research
UK-funded PhD, I am now continuing my
clinical training as a specialist registrar in
rheumatology. Currently, this involves
seeing patients alongside a team of
consultants and nurses at County
Durham and Darlington Foundation
Trust. I thoroughly enjoy my work, and
feel privileged to be able to spend time
with, and learn from, the wonderful
people of north-east England, whilst
pursuing my academic interest in early
arthritis.
About Arthur
We have a four-year-old son and a
two-year-old daughter, which about
covers it, I think!
Dr Arthur Pratt is a specialist
•registrar
in rheumatology at County
Durham and Darlington Foundation
Trust.
What is your greatest research
achievement?
During my recent studies I have, with the
help of many people, learned a range of
new clinical, laboratory and analytical
skills. It’s been a bumpy ride at times, but
being awarded my PhD was a very
satisfying experience.
Why did you choose to do this
work?
As a trainee rheumatologist, I was struck
There is a group of patients that we see in by the challenge doctors continue to face
the early arthritis clinic who don’t yet
in confidently diagnosing rheumatoid
Arthritis Today 31
Fundraising news
Fundraising news
A lean, mean, admin machine
The sun shines
on the London
Marathon
That’s the supporter services
team. Supporter services
manager Louisa Gunnee
explains how we deal with your
donations.
The vital role of the team is to
administer all daily income. A few
examples of this are:
Direct marketing
• Mailings. We process the donations
received from various mailing
campaigns, logging them onto our
database and sending out an
acknowledgement to our donors.
We’re a team: Laura Scarborough, Louisa Gunnee, Joanne Unwin & Jennifer Unwin
flowers. These types of donations are
processed in some depth.
Sponsorship
We process the sponsor money,
ensuring that gift aided donations are
claimed correctly, and log the details
onto the database. Gift Aid is an easy
way for charities to increase the value of
their gift of money from UK taxpayers
by claiming back the basic tax rate paid
by the donor.
• Trading. Our team administers the
donations that are generated from the Special occasion donations
Christmas catalogue.
These are donations from people who
are celebrating an event such as an
• Raffles. We ensure all the ticket
purchases and donations are recorded anniversary, wedding or birthday, and
onto our database.
who asked for donations to charity in
• Telemarketing. We administer the
direct debits.
lieu of gifts. This type of donating is
becoming extremely popular.
In memory
Direct debits
This is an increasingly popular way of
donating to charity in which the
relatives of someone who has died
request donations to charity instead of
All the donation and account details are
captured on our database, and pushed
through our automated direct debit
process to the donor’s bank.
32 Arthritis Today
Arthritis Research UK was the proud
beneficiary of a special concert held
at the Barbican in London in April.
The City of London Choir performed
with the Royal Philharmonic
Orchestra, conducted by Hilary
Davan Wetton in an all-Mendelssohn
programme.
As 35,000 runners gathered at the
Blackheath start line of the 30th Virgin
London Marathon, amongst the elite
athletes, runners in fancy dress and
Guinness World record hopefuls were
nearly 70 Arthritis Research UK competitors nervously waiting to get going.
The supporter services team is the voice
of the charity, working as the contact
point to our donors. We’re the interface
between people outside the charity
that raise money for us and make
donations, and the fundraising and
finance teams here at Arthritis Research
UK.
We’re only a small team of four but we
are focused on delivering the best
supporter care we can to encourage
our donors to continue their generous
support. It’s very important for us to
acknowledge our supporters promptly,
giving them assurance that their
donation reached us. It is our
responsibility to enhance the
experience of being a donor to Arthritis
Research UK, our department try our
utmost to offer the most appropriate,
friendly, efficient and effective
customer service.
Barbican concert
thanks
What we raised in 2010-11
Voluntary income:
Legacies: £19,525,000
Donations: £2,690,000 (plus
£645,000 restricted income)
Activities for generating funds:
Fundraising events £914,000
Charity shops: £3,102,000
Mail order and other trading:
£402,000
Investment income: £1,964,000
Intellectual property income:
£9,869,000
Incoming resources from charitable
activities: £146,000
Other incoming resources: £3,000
Total income: £39,265,000
Whilst spectators and supporters enjoyed
the glorious sunshine and warm weather
on the day, for the runners it meant an
Arthritis Research UK chief executive Liam
extra effort.
O’Toole cheered on the runners at the 22
mile point and was the first one to
Michelle Harrison, information content
congratulate them at the post-race
manager at Arthritis Research UK, was
reception at the QE2 conference centre:
one of the daring ones who took part in
the gruelling 26.2 miles race and finished “Once again congratulations to our
the course in the commendable time of
runners who completed the Virgin
four hours and 36 minutes.
London Marathon. Their fundraising
Michelle said: “The heat on the day made efforts have been fantastic and every
the challenge that little bit harder but the penny raised counts towards the research
into the causes, treatment and cure of
crowd support and all the generous
arthritis,” he said. Our runners raised
donations carried me through the finish
more than £95,000 from their efforts; a
line. I have never done any running
fantastic achievement.
before and the marathon was a real
challenge but I loved the experience.”
We would also like to extend a special
There was definitely plenty of sweat and thank you to the British College of
Osteopathic Medicine who provided a
quite a few tears too. Runner Nick Pond
said: “From mile 20 I knew I was going to massage to our runners.
finish, I didn’t look at my watch, didn’t
worry about time and just soaked up the
atmosphere and encouragement from
thousands upon thousands of people.
I must have run the last three miles mostly
in tears, not of pain, but simply pride and
pleasure. Pride that I was delivering on a
commitment to Emma, my arthritisaffected daughter, and all my sponsors.”
•
Michelle Harrison with family and friends after completing her first-ever marathon
We would like to extend our special
thanks to the City of London Choir
for nominating Arthritis Research UK;
in particular Tonya Vincent, Hilary
Davan Wetton and Jenny Robinson.
Pictured from left to right are
Sarah Greene, chief executive
Dr Liam O’Toole and director of
fundraising Louise Holland.
If you have been bitten by the running
bug why not contact Lyndsey on the
events hotline 01246 541108 or email
events@arthritisresearchuk.org for
further information on the events you
can partake in. For more inspiration and
to see how our runners got on, check out
the marathon video at
Arthritis Research UK’s annual
report and financial statements
2010-2011 can be accessed on our
website at
It was a marvellous evening and a
fantastic opportunity for the charity
to engage with many of our
supporters during a special preconcert reception. Charity envoy Phil
Packer and TV and radio presenter
Sarah Greene (who made a moving
appeal on behalf of the charity) were
among our guests.
Members of our Central London
committee, from left to right: Alison
Allvey, Lady Thomas, Elizabeth
Dawson and Pippa Diggle.
Arthritis Today 33
ADVERTISEMENT
Arthritis takes away the
lives of people like Alice
You can help
give it back again
As a young girl Alice Peterson lived for
tennis, and by her 18th birthday she was
ranked number six in the country. But just
a few months later she was diagnosed with
rheumatoid arthritis, which meant she
would never be able to play tennis again.
Conventional therapies had little effect
on Alice’s condition, and she spent the
next few years battling with the disease
as it took an unrelenting grip on her body.
Writing about her experiences helped Alice
make sense of it all, and she went on to
publish a book that has brought hope to
many other arthritis sufferers. Alice was
finally able to relieve the pain through
anti-TNF therapy, which was developed by
scientists funded by Arthritis Research UK.
Sadly, for 30 per cent
of inflammatory
arthritis patients, antiTNF and other biologic
therapies don’t work. We
are researching into new
treatments and earlier
diagnosis to help even
more people live a life free
from the pain of arthritis.
But we urgently need your
help to make sure the
research continues.
Enjoy bath time
independence again
Your donation today will help find
new treatments to transform more
lives. Please give whatever you can
by filling in the form or calling our
donation line on 0300 790 0444.
Yes, I want to help develop new and better treatments to reduce the pain
Title (Mr/Mrs/Ms/Other)
First name
If you have trouble getting in and out of
the bath and the thought of bathing has
become a daunting prospect, discovering
that there is a simple, affordable solution
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Arthritis Research UK is a registered charity in England and Wales no. 207711, Scotland no. SC041156.
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Make your gift worth even more
We’d 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.
Gift Aid allows Arthritis Research UK to reclaim the tax that you have
already paid on your donations – at no extra cost to you. It means your
donation could be worth 25% more to us. To sign up just tick the box
below and check that your name and address details are correct.
Email
Home Tel
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.
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Please fill in this form and return it to: FREEPOST SF671, Arthritis Research UK, PO Box 177, Chesterfield S41 7BR
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