The type of arthritis I have is rheumatoid
arthritis which is a type of inflammatory arthritis.
I was aware that I had some sort of problem with my hands because they were swelling badly
and they were bright red. Between actually being diagnosed and getting
the better form of disease-modifying drug took probably five years or so.
I have actually ended up with a lot of orthopaedic surgery – I’ve got two replaced knees,
one replaced hip and I’ve had shoulder surgery. That obviously affects your whole life.
Inflammatory arthritis affects quite a substantial proportion of the population and if we look
at rheumatoid arthritis which is the commonest by far of these inflammatory polyarthritis
diseases we are looking at about 1% of the population.
The Oxford AHSN serves a population of about 3 million – so we’re looking at about
30,000 people with rheumatoid arthritis. That’s why it’s really really important
to be able to identify this group of disorders early and to intervene early.
With early intervention you get the best long-term outcomes. Given that they are chronic lifelong
diseases, you want to preserve the health of the patient right through the lifetime
of the condition. The group meets face to face and we meet at
one of the hospitals within the network. That’s very nice because it means we can see each
other’s facilities and get to know one another’s hospitals. We discuss a variety of issues
and look at some of the innovations that we can implement together.
One of the strengths of the network to date is the levels of engagement we’ve seen across
the region. We have a core group of consultant rheumatologists
who lead the activities but we’ve also seen engagement from specialist nurses, pharmacists
and registrars. Ongoing projects in the early inflammatory
arthritis network include helping our partners take full advantage of the introduction of
biosimilars in rheumatology. We’re also trying to address the variation in GP education
around symptoms and referral pathways for early inflammatory arthritis.
My role is to provide a patient perspective and patient experience to what’s going on
clinically. I think it’s very important for any clinician
to have a patient perspective because if you haven’t had it, you can’t imagine what
it’s like. I think that applies to an awful lot of illnesses
right across the board, not just rheumatology. We had particular difficulties getting to
see our patients quickly and the network helped us bring this to the attention of management
in the trust and increase levels of specialist nurses. That really transformed the services.
I’ve found it particularly interesting having a patient representative here. Seeing their
point of view about things like biosimilars has been very interesting, because perhaps
she has brought thoughts to the meeting that weren’t necessarily what I expected or even
what my patients are saying in clinic. I think it has been really useful in terms
of sharing experience, sharing different ways of doing things, looking at ways of optimising
patient care and also being unified as a group so that we can face managers and commissioners
and say this is something that is important to us on a regional level and this is what
our colleagues are doing elsewhere. There’s been an enormous interest in doing
this. People recognise the fact that the earlier we diagnose arthritis and the quicker we can
get patients looked after and treated the more successful we will be at managing their
condition. The hope is that the network continues to
meet and grow and will be an inspiration to other regions.
It’s really useful to be part of this network. By working together, we should be able to
improve the long term prognosis of patients with newly diagnosed inflammatory arthritis.
I hope it will improve patient access, support, treatment and make life easier for people.