Report: Britons at risk of long-term disability, reduced life expectancy due to delays in treatment services

Jul 25 2016

Up to a million Britons are at risk of preventable, long-term disability and reduced life expectancy due to delays in referrals to specialist advice and treatment services, according to the most comprehensive audit of rheumatology services carried out across England and Wales.

The first weeks and months following the onset of rheumatic disease symptoms are known as the 'window of opportunity', and it is crucial that patients get appropriate treatment in that time period to maximise their chances of avoiding lasting complications. Early referral to, and assessment by rheumatology services is therefore vital and the report reveals that for four out of five patients in England and Wales, this does not happen.

The National Rheumatoid and Early Inflammatory Arthritis Audit report was commissioned by the Healthcare Quality Improvement Partnership (HQIP) as part of the National Clinical Audit and Patient Outcome Programme (NCAPOP) and carried out by the British Society for Rheumatology (BSR). The report reveals that nationally just 20 per cent of patients who see a GP with suspected rheumatoid and early inflammatory arthritis are referred to specialist services within the three-day limit recommended by the National Institute for Health and Care Excellence (NICE). For some health providers, this wait is over 20 weeks for a quarter of their patients. Nationally, fewer than half of patients who are referred, are seen by a specialist within the three-week time limit recommended by NICE. For some providers, a quarter of patients are waiting more than 12 weeks.

The report reveals considerable differences in achievement rates for the standards across England and Wales. A ‘postcode lottery’ means that depending on where a patient lives, they are far more or less likely to access treatment at an early stage and hence prevent the disease becoming more advanced and life-shortening. For example, patients in Wales are half as likely to see a specialist within three weeks as those living in London.

The audit data points to several reasons for the delays in accessing services including the overall number of rheumatology specialists needed to diagnose and treat the disease. The BSR calculates that consultant levels are 21% below Royal College of Physicians recommended levels, and the number of additional consultants needed is likely to increase as the demand for rheumatology services increase. The latest report also shows a link between numbers of specialist nurses and an ability to commence treatment in a timely manner and achieve treatment targets.

Research has highlighted a lack of awareness of the symptoms of disease and of the need for quick referral amongst GPs. Most patients will initially present to their GPs.

There are significant personal and society costs linked with inflammatory and rheumatoid arthritis. These are some of the most common debilitating medical conditions in the UK. Around 10 million people have a form of arthritis, of which almost 700,000 have rheumatoid arthritis. Around 12,000 children suffer from juvenile idiopathic arthritis, the childhood equivalent disease. The arthritis can be so severe that those with the disease cannot bathe or dress themselves or perform simple tasks such as walking a short distance. Rheumatic conditions do not only damage joints but can also damage vital organs, including the lungs, heart, nervous system, kidneys, skin and eyes if not adequately treated.

One third of sufferers will have stopped working within two years of onset, and half will be unable to work within ten years. Rheumatoid arthritis is a major cause of sickness absence and unemployment, and this is estimated to cost around £1.8 billion per year. It has been estimated that reducing work limitations and loss of work, can save the UK economy around £31 million a year for rheumatoid arthritis alone. Patients are twice as likely to experience depression and have similar risks of cardiovascular disease as patients with diabetes.

The audit’s recommendations include:

• Increase awareness amongst the general public of the symptoms of inflammatory arthritis and the need for quick treatment to prevent it progressing
• Increase GP’s awareness of the varied symptoms and in particular the need for referral within the NICE guidelines in order to maximise the efficiency of treatment programmes and prevent the disease progressing into more serious, later stages.
• Analyse and understand variation in performance against the key standards
• Review the adequacy of specialist nurse provision, given the strong association between staffing levels and timely delivery of intensive treatment.
• Support national audit data collection.

Clinical Audit Director, Dr Jo Ledingham said:

Inflammatory arthritis is a widespread medical condition with higher linked mortality rates than some cancers. But, with appropriate and quick treatment the disease and its consequences can be controlled. GPs understand the need for speed when it comes to diagnosing and referring cancer patients, yet many still don’t understand that they need to treat inflammatory arthritis with the same urgency.

Remission is a realistic aim with modern management, allowing patients to live a longer and more fulfilling life, benefitting themselves, their families, their employers and ultimately costing the government less in benefit payments and more costly drug treatment. Rapid access to specialist services is needed, however, to facilitate this. I hope this report serves as a wake-up call to everybody involved in referring, diagnosing, treating and commissioning services for inflammatory arthritis – from GPs to specialists. In particular, far quicker, and more consistent referral and treatment times need to be achieved across England and Wales.

BSR President, Dr Peter Lanyon, added:

It’s now very clear from the consistency of the data, that important variations in standards for people living with inflammatory arthritis still exist. This has implications for both primary and secondary care clinicians and commissioners. We all have a role to play in working towards reducing this unwarranted variation, at local, regional and national level. I would urge all those commissioning or delivering services to read the report in detail, reflect on the results, and decide individually and within respective teams, what the implications are and what actions are required.