Though the pandemic has worsened an already difficult situation, it has also highlighted pre-covid disparities in rheumatology services which could provide impetus to revamp, writes Jennifer Trueland
This article forms part of an AbbVie UK commissioned digital feature package with the Health Service Journal (HSJ). AbbVie has been involved in funding and content decisions and development of this article. Intended audience is healthcare access decision makers in line with HSJ’s readership. Please note, HSJ website (www.HSJ.co.uk) does not have restricted access to this group.
According to Clare Jacklin, rheumatology has been a “Cinderella” service for a long time – and the pandemic has exacerbated an already tough situation.
The chief executive of NRAS (National Rheumatoid Arthritis Society) warns that while services were struggling pre-covid, with patients waiting too long for specialist care and treatment, they are now under even more pressure. What’s more, the care that a patient receives is still too dependent on where they live.
“Even before the pandemic there was quite a discrepancy in different areas in terms of access to full multidisciplinary rheumatology services,” she says. “If you’re lucky enough to be treated in a large teaching hospital you probably have access to a full complement of the multidisciplinary team, but if a patient’s being treated in a small district general hospital, they may really struggle to have that full complement.”
Treatment for rheumatoid arthritis (RA) has been transformed in the 21st century. The roll-out of advanced therapies has been life-changing for patients, and beneficial for the NHS too, with patients whose disease is under control being less likely to need repeated interventions such as joint replacement surgery. But although the UK was one of the early adopters of advanced therapies, it has failed to keep pace; covid has only made the situation worse, says Ms Jacklin.
“We’re getting calls to the NRAS helpline from people who are waiting for a firm diagnosis but can’t get to the rheumatology department because of the backlog, even though rheumatology teams are working flat out,” says Ms Jacklin. “But the longer someone is waiting for diagnosis, and to get on to the correct medication, the worse the joint damage, the impact on their lives, of not being able to work, not being able to look after their families, not being able to lead full and productive lives.”
Once diagnosed, if their disease progresses, they may still be turned down for life-changing medicines because they fall short of the threshold for treatment, she warns. This is particularly the case if they fall into the “moderate disease” category, although National Institute for Health and Care Excellence has now approved some advanced treatment for moderate disease.
I think if covid has shown us anything it’s been the vital important role of patient organisations in being part of the whole pathway of care
“I personally have a big issue with calling it that because if you’re in regular pain, and flaring, and having considerable joint damage, I wouldn’t call it moderate – it is active disease,” says Ms Jacklin.
Trish Cornell is a rheumatology nurse consultant, working both for the NHS and for AbbVie. She is a former member of the RCN’s rheumatology forum committee and has sat on national and international committees and remains closely involved in training health professionals. She has personally witnessed the transformative impact of the right treatment on patients, so is concerned that everyone should get the same chance. “Even though there are national guidance documents, there are disparities in services depending on where you live,” she says. “It depends on a number of things, including whether you live somewhere urban or rural and how many specialist nurses there are. But in England it also depends on how your CCG interprets NICE guidance.” This means, she adds, that people living in some clinical commissioning group areas will be denied access to a fourth advanced therapy if previous treatments had failed to control their disease adequately – a situation highlighted in January by NRAS.
As a clinician, she finds it distressing when patients are denied the right treatment because she knows how life-changing treatments are. “It’s just amazing. For me, it’s the best job in the world when you see the impact on a patient. It gets their disease into remission, they can get their lives back, they’re able to get back to work, play with their children or grandchildren, do whatever they want to do.”
Covid-19 has had a tremendous impact on services and on patients, she says, with a backlog both in seeing new patients with suspected disease, and in doing regular reviews of existing patients. “Face-to-face appointments have been replaced with virtual appointments, and often that means telephone rather than video consultations,” she says. “While these have their place, it’s essential to ensure that patients with active disease are assessed and treated appropriately.”
NRAS has been surveying CCGs using freedom of information legislation, and early findings suggest that prescribing pathways vary across England, with different interpretations of the current NICE guidance. This means that the treatment you are offered depends to a large extent on where you live. The full results are expected to be published this summer.
Nevertheless, Ms Jacklin is hopeful that covid will be a catalyst for improvement. “My hashtag isn’t ‘back to normal’; it’s ‘forward to better’. I think if covid has shown us anything it’s been the vital important role of patient organisations in being part of the whole pathway of care. With the introduction of telemedicine it’s become even more important that patients are really well-educated on their condition so that they can self-manage better, and that’s where patient organisations can be part of that solution. If someone knows more about the disease, feels more in control, knows how to navigate the health system and knows how to care for themselves when they can, but knows when they need that intervention from healthcare professionals, they will be utilising the health service in a far better way.”
Covid could be a catalyst for improving rheumatology services
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Covid could be a catalyst for improving rheumatology services