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7 October 2016updated 05 Aug 2021 10:03am

In the treatment of rheumatoid arthritis, patients are experts too

Rheumatoid arthritis (RA) is often described as a ‘hidden’ illness, because the symptoms are not clearly visible to others, but it drastically affects people’s lives. With early diagnosis, referral and treatment crucial to effectively managing the condition, it’s important that RA patients are decision makers in their own care.

THE PATIENT

Katy Pieris has lived with rheumatoid arthritis for the last five years.

When I was first diagnosed with RA, five years ago, I struggled to get involved in my care. I had to go out and do a lot of research myself. I think patients need more information to educate themselves, especially on how to manage RA’s effect on their lifestyle. Consultants can vary considerably – I’ve been lucky so far, but fellow patients have told me there are good and bad consultants out there. Patients can also experience a ‘postcode lottery’ when it comes to the quality of care they receive in hospital, with some hospitals more forthcoming in funding biologics treatments than others.

Patients need to have the courage to say what they want. This can be hard, but everyone with RA has to remember that the whole point of their treatment is to make them feel better, and nothing else. I understand that clinicians might not always feel comfortable relying on patient input. They might not want to have needy patients impacting their budgets – but we need to have dialogue if we want to treat the whole person.

THE CAMPAIGNER

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Ailsa Bosworth is Chief Executive of the National Rheumatoid Arthritis Society (NRAS).

When I was diagnosed with RA over 35 years ago, the delivery of care was very different to modern treatment pathways. This led to me sustaining

a huge amount of irreversible damage and a level of disability that would be unlikely to occur were I diagnosed today. Every year since the launch of NRAS in 2001, we have seen major growth in the research of the pathogenesis of RA, but we still face many challenges and a wide variation in care, as revealed by NRAS’ survey done in collaboration with Lilly and ComRes.

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The survey revealed that 48 per cent of people who participated reported waiting more than three months after their initial visit to the GP before they saw a rheumatologist1, which does not meet the NICE Quality Standard recommendation of referral within three working days of presentation of symptoms2. Over a quarter (26 per cent) waited more than a year before getting a formal diagnosis1.

The challenges are clear: we need to speed up the process of diagnosis and reduce the three major areas of delay that currently exist: the lack of public awareness of the early symptoms of RA; GP education and awareness of need to refer rapidly; and the ability of specialist care to see referred patients within three weeks. Delivering best care actually costs the NHS less than delivering sub-optimal care.

THE RHEUMATOLOGIST

Peter Taylor is the Norman Collison Professor of musculoskeletal sciences at the University of Oxford and the Head of Clinical Sciences at the Botnar Research Centre.

There is no ‘one size fits all’ approach to managing RA. It is important to recognise that there is a distinction between the physician-determined goal of a particular ‘disease state’, and functional goals in the life of a person with RA, such as cooking a meal or walking the dog. The widely recognised Treat to Target (T2T) approach sets remission as the goal, and where that is not achievable, low disease activity as a secondary goal. But the challenge – particularly in established RA – is that many patients are unable to attain either of these goals, and therefore the lowest disease activity state attainable by the individual can only be determined by many rounds of escalation of therapy or switching medicines. These have to be personalised.

Fatigue, pain and depression are common problems for many people with RA, who can struggle to cope with the everyday demands of life while trying to keep up with their healthy peers. However, with busy clinical schedules and an overemphasis on treating the disease state rather than the patient, physicians may not undertake an evaluation of a person’s emotional wellbeing when they attend clinic.

The best outcomes for a person with RA can be achieved by optimising suppression of inflammation over time and, having done this, identifying the key aspects of life of importance to the individual that continue to be impacted by RA. 

THE PHARMACIST

Duane McLean is Chief Pharmacist at a general hospital.

Part of a pharmacist’s role is to help model the financial impact of medicines, and to support clinical conversations about patient pathways and appropriate use of treatment. With an increased focus on data and profiling of our patients this has improved, leading not just to better medicines use but to improvements in implementation of new and existing therapies. In conditions such as RA, improved medicines use can reduce the risk of joint destruction and help keep people in work.

My job is to ensure the safe, clinical and cost-effective use of medicines – and with rheumatology coming second behind cancer in terms of spending, optimisation of the prescribing, dispensing and administering of medicines is very important. This can range from working with home care providers to ensure medicines are delivered on time to helping provide education for patients on storing medicines properly.

Rheumatology performs well when it comes to involving patients in decisions about their care, but it’s an area in which the health service as a whole could improve. There is a desire for progress, but while national frameworks have significant influence, much depends on the local approach. Patient advisory groups on pathway design, for example, can produce relatively small changes that lead to considerable improvements.

The key challenge we face overall remains that of meeting need – the question of how to manage resources

so that patients receive the appropriate level of care. But while clinicians are the experts in treating RA, they could also learn a thing or two from patients themselves – spending more time with the people who are the experts in living with it.

UKRHM00017 September 2016.

Visit www.lilly.co.uk to learn more.

1 ComRes. Data on file. Survey of patient experiences of rheumatoid arthritis, December 2015.
2 NICE. Rheumatoid arthritis in over 16s: Quality Standard www.nice.org.uk/guidance/qs33, June 2013 (Accessed May 2016).
3 NICE. Rheumatoid Arthritis in Adults: Management www.nice.org.uk/guidance/cg79/chapter/recommendations, December 2015 (accessed May 2016).