Health CommitteeWritten evidence from the British Society for Rheumatology (LTC 88)

The British Society for Rheumatology (BSR)1 exists to promote excellence in the treatment of people with arthritis and musculoskeletal conditions and to support those delivering it. As a professional association representing those specialising in rheumatic and musculoskeletal conditions, BSR aims to improve standards of care in rheumatology.

The BSR welcomes the opportunity to contribute to this timely, necessary and important inquiry.

Key Points:

Rheumatic diseases are a common, yet under-recognised cause of preventable long-term health impacts and disability ages in the UK.

Early treatment and service coordination across all health and care sectors offers potential to improve patient experience, improve clinical outcomes, and make significant cost savings.

There are major variations in rheumatology service provision throughout the UK and compared internationally; however we can highlight best practice approaches that are proving successful.

The Impact of Rheumatic Disease

1. Rheumatology is a multidisciplinary branch of medicine that deals with the investigation, diagnosis and management of patients with rheumatic diseases and other musculoskeletal conditions. This incorporates over 200 disorders affecting joints, muscles and soft tissues, including autoimmune disorders and spinal pain. A significant number of rheumatic conditions also affect other organ systems.

2. Rheumatic diseases are often under-prioritised, in part due to low levels of public awareness about what rheumatology is. A recent survey conducted by the American College of Rheumatology indicated that the word “Rheumatology “ is for the majority of public participants not known. For others it was commonly associated with foot doctors/podiatry, or viewed solely as an issue relating to old age. In the UK, the low profile of rheumatology is reflected in the fact that it is only mentioned once in the Department of Health’s Long Term Conditions Compendium.2

3. Despite low awareness, musculoskeletal conditions are the the single biggest cause of disability, accounting for 31% of the total UK burden. In contrast to encouraging improvement trends for premature mortality, the UK trend for chronic disability burden is getting worse. In a recent international comparison of disability adjusted life years in developed countries with similar economies, the UK ranks a mere 16 out of 19 for osteoarthritis, and 15 out of 19 for low back pain.3 Coupled with the known health service challenge of an ageing population, it is therefore vital to reverse the trend of avoidable disability through the quality improvement of rheumatology services.

4. A key issue to address is the collection of data, which has failed to evolve over time to take account of the transformation in rheumatology treatment options. Patients with rheumatic disease used to occupy a great number of hospital beds; however drug therapy now allows the provision to be largely ambulatory. Commissioners therefore have little to inform their service specifications, and there is insufficient public health epidemiology data to inform Joint Strategic Needs Assessments. The fact there are over 200 conditions can further hinder understanding and therefore the BSR has created a simpler domain and pathway approach.

5. Although rheumatology services no longer services are no longer mainly inpatient rehabilitation services involving hospital admission, the potential for Quality, Innovation, Productivity and Prevention (QIPP) savings remain significant, as £680m was spent on drug therapy in England alone in 2012. Savings come from treating people to NICE and national standards and early diagnosis and intervention, and include:

(a)reduction in the need to use expensive biologics for advancing disease;

(b)reduced need for joint replacements, as combined cost of hospital and social care for patients with a hip fracture amounts to more than £2.3 billion per year in the UK;

(c)reduced health and social care costs (including nursing home requirements) for disability caused by high disease activity;

(d)and reduction in the percentage of all patients (currently a third) unable to work within two years of diagnosis.4 The Health and Safety Executive estimated in 2011 that over nine million working days are lost each year from work-related musculoskeletal disorders. The estimated cost to the economy of sick leave and work-related disability for people with rheumatoid arthritis is £1.8 billion a year.

6. Below we outline some examples in which rheumatology services have been configured to offer the patient benefits and reduced costs outlined above. However service provision remains varied throughout the UK; the challenge is therefore to enable the delivery of consistently excellent services.

Early Intervention and the Integrated Care Patient Pathway

7. Unlike other services which can be wholly community-based, effective rheumatology services require integrated care along the whole patient pathway, across secondary, community and primary care. This is due to the diagnostic infrastructure required, and the complexity of autoimmune diseases which can affect multiple organ systems.5

8. Wherever rheumatology services are delivered, there needs to be an extensive diagnostics infrastructure in place incorporating MRI, ultrasound/X-ray and complex blood testing. Unless there is a major investment in community diagnostic centres, this will continue to be provided in acute or community hospital settings. The benefit of having these diagnostic tools in a “one-stop shop “ is that the patient avoids the inconvenience of multiple appointments (and associated multiple costs) and the crucial time period from symptom onset to treatment is minimised.

9. Early intervention is clinically significant in rheumatology. Up to three months after symptom onset, rheumatic diseases can be treated effectively (to a low level or remission) with relatively inexpensive disease-modifying antirheumatic drugs (DMARDS). A treatment delay of more than three months can result in a more aggressive course to the disease which causes long term damage to joints, and requires expensive biologic treatments.

10. Although the NICE guideline requires that patients are put onto DMARDs within three months of symptom onset, a NAO report in 2009 found that this happens with only 10% of patients.6 This is in part due to delays in being seen by a rheumatologist and partly due to local differences in the access level to key drugs. The average delay in the UK in GP surgeries is around nine months, by which time joint damage in aggressive disease has already occurred.

11. The same report concluded that only 63% of patients in acute trusts provided annual review for Rheumatoid Arthritis patients to monitor disease progression and emergence of co-morbidities. This indicates that there is some way to go in integrating care for ongoing management of patients with rheumatic disease, as well as initial diagnosis and treatment.

12. The significance of this is shown in a recent National Rheumatoid Arthritis Society (NRAS) recently report5 that highlights the range and impact of comorbidities associated with rheumatoid arthritis, and demonstrates the extent to which rheumatology services need to be linked to other specialist and community services in a coordinated and holistic manner. Key points from this report include the following:

(a)Around 80% of rheumatoid arthritis (RA) patients will have one or more co-morbidities.

(b)The risk of heart attack is doubled for RA patients. The risk of atrial fibrillation is around 40% higher among RA patients than those without RA. The risk of stroke is 30% higher for RA patients.

(c)Interstitial lung disease associated with RA is a major cause of death amongst RA patients.

(d)Rates of osteoporosis can be up to twice as high amongst RA patients than the general population.

13. Most financial incentives for good practice in the current system only focus on parts of the pathway—discreet pieces of care as opposed to the whole patient care package. This approach is a key system barrier to the principle of integrated care.

Commissioner Support, and Best Practice Examples

14. The BSR have joined with Arthritis Care and NRAS to form the Rheumatology Commissioning Support Alliance—a project funded by the Department of Health to support commissioners and develop tools to demonstrate how better services for patients and better value for the NHS can both result from a more service-user-centred approach.

15. The BSR has also recently launched a Commissioning Toolkit for Providers.7 This package aims to help rheumatology professionals develop their knowledge and skills to design effective services and make the most of commissioning opportunities.

16. In addition to the initiatives above, the BSR is proactively developing a hub of good practice service models. We intend to publish case studies in the autumn, however in advance of this we outline two models below that give a flavour of current initiatives being delivered in the UK.

17. Site A example:

(a)Standardised whole patient pathway that meets all NICE and European standards.

(b)Single set of patient records between doctors and the multi-disciplinary team (MDT).

(c)Hand-held patient records for decision making

(d)Early cognitive behavioural therapy regarding first-stage disease perception.

(e)The first eight weeks of drug therapy are prescribed by GPs after diagnosis—primary care is the first part of the pathway with an agreed protocol.

(f)The patient is a partner in treatment and goes to all meetings including research.

(g)There is a specialist nurse care co-ordinator across acute, community and primary care. This includes a hot line and direct access for GPs and patients, enabling self-care, helping people stay in the community and enabling rapid response to disease flares.

18. Site A outcome: reduced work loss due to depression and anxiety, and 40% reduction in the need to use expensive biologic drugs.

19. Site B example:

(a)Working with community pharmacy to reduce medicine costs incurred through wastage and expiry.

(b)A “treat to target “ biologics approach (personalised prescribing based on individual patient data as opposed to standard drug and dosage regimes).

(c)Patient partner training for over 2000 GPs to enable better referral.

(d)There is a specialist nurse care co-ordinator across acute, community and primary care. This includes a hot line and direct access for GPs and patients, enabling self-care, helping people stay in the community and enabling rapid response to disease flares.

20. Site B outcome: Savings of over a quarter of a million pounds per year over the last three years. These are shared between the commissioner and provider.

21. The BSR is happy to expand further on any of the points raised in this submission.

13 May 2013

1 BSR website: http://www.rheumatology.org.uk/

2 Third Edition Long Term Conditions Compendium, Department of Health (May 2012): https://www.gov.uk/government/news/third-edition-of-long-term-conditions-compendium-published

3 UK health performance: findings of the Global Burden of Disease study 2010: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(13)60355-4/abstract

4 NICE guideline for rheumatoid arthritis: http://publications.nice.org.uk/rheumatoid-arthritis-cg79

5 NRAS “The Impact of Rheumatoid Arthritis Co-morbidities “ December 2012: http://www.nras.org.uk/includes/documents/cm_docs/2012/t/1_the_impact_of_rheumatoid_arthritis_comorbidities_final_pdf_pdf.pdf

6 NAO rheumatoid arthritis report 2009: http://www.nao.org.uk/report/services-for-people-with-rheumatoid-arthritis/

7 BSR Commissioning toolkit, March 2013: http://www.rheumatology.org.uk/about_bsr/press_releases/commissioning_toolkit_launched.aspx

Prepared 3rd July 2014