Shared learning database

National Rheumatoid Arthritis Society
Published date:
February 2011

Our submission describes the process we went through to bring about change in commissioning evidence based best care for people with rheumatoid arthritis in the East of England region. It describes the stakeholders we collaborated with to effect such change and to develop and introduce standards based on NICE Rheumatoid Arthritis Guidelines and how this work has subsequently led to the introduction of a QIPP report demonstrating substantial savings to be made.

This example was originally submitted to demonstrate implementation of NICE guidance CG79. This guidance has been updated and replaced by NG100. The example has been reviewed and continues to generally align with the updatewd guidance. The updated guidance should be referred to if replicating any aspect of this example.

Guidance the shared learning relates to:
Does the example relate to a general implementation of all NICE guidance?
Does the example relate to a specific implementation of a specific piece of NICE guidance?


Aims and objectives

The ultimate aim of everything we do as a charity is to improve the lives of people living with Rheumatoid Arthritis. This initiative has at its heart this aim by working to encourage and promote implementation of NICE Guideline  The Management of Rheumatoid Arthritis in adults, together with other commissioning tools launched in 2009 which embed NICE guidance.

In January 2009, as Joint Chair of the Rheumatology Futures Project at the time, Ailsa Bosworth, CEO of NRAS and Jenny Snell, Head of Government Affairs, together with the President of the British Society for Rheumatology, had a meeting with Lord Darzi to bring to his attention the findings of the Kings Fund Report, commissioned by the Futures Group. We wanted to alert him to the importance of the findings prior to the press launch of the Report. We also contributed to the NAO Report which we knew we would publish later in 2009 and come to similar findings as the Kings Fund Report into RA Services in the UK. The findings of both reports showed a wide variation in access to care and treatment and our principal aim was to do everything in our power to address this post code lottery of care by encouraging implementation of the NICE Rheumatoid Arthritis guidance. Ailsa was a member of the Guideline Development Group. A further outcome from The Futures Group which is relevant to this initiative, is the Inflammatory Arthritis Commissioning Pathway, (published in July 2009) which embeds the NICE guidance published at the time and which won support and endorsement by the Department of Health and can be found on the Department's website.

Further work is in progress by RFPG in collaboration with the Royal College of GPs and Arthritis Research UK on raising public and primary care awareness of the need for early referral, and also a 'Patient Pathway' to accompany the Commissioning Pathway to ensure that patients are able to access reliable and authoritative sources of help and information at every stage of their journey. As described, the background to this initiative was the post code lottery of care identified by both the Kings Fund and subsequently the NAO Reports which led to our campaign 'The Year of RA' in 2009. The meeting with Lord Darzi was to gain insight as to the most effective route to influence change at a national level in regard to commissioning better care pathways. As a consequence of our discussions with him, we targeted the right people at Strategic Health Authority level, initially to make them aware of the tools available) to commission best evidence based care for RA/IA.

Our objective was to make contact with as many SHA Heads of Long Term Conditions as possible and Jenny Snell had positive discussions with 8 out of the 10, with a view to finding at least one initially with whom we could work extensively to achieve our goals of widespread improvement in long term outcomes as a result of commissioning best evidence based care across a region, thus acting as an example of good practice which could be duplicated in other regions. Initial progress was made in the East of England SHA. We could see the value of looking at commissioning IA rather than RA alone (although RA is the most common form of IA, over half a million people in England alone), and we invited the National Ankylosing Spondilitis Society to join in our initiative even though AS does not at the time of writing have a NICE clinical guideline. However, AS is also commonly not diagnosed at an early enough stage and would also benefit from much better commissioning pathways.

Reasons for implementing your project

The start point was that virtually nowhere in England were services for RA being commissioned in line with NICE guidance. Wide variability in access to best evidence based multi-disciplinary care had been identified by the Kings Fund Report followed later by the NAO Report into RA services. The NAO report went further in terms of health economic benefits identified around improved access to earlier diagnosis and treatment. Not being diagnosed early or being optimally managed costs individuals, the NHS and society significantly more than if someone is diagnosed earlier and treated in line with NICE Guidelines. These reports provided the baseline data and together with data relating to the impact of RA on one's ability to work which we collected in 2007 and 2009, we produced a report in 2010 entitled 'The Economic Burden of RA'. (See enclosures). This report highlighted the huge cost in terms of lost productivity in RA, given that a significant proportion of people lose their jobs within 6 years of diagnosis. The NAO Report in particular contained economic evidence that productivity gains could be achieved and that patients' lives could be greatly improved if earlier diagnosis and treatment were possible. Quote 'Currently only 10% of patients with the disease are treated within the 12 week window. The NAO report economic modelling suggests that increasing this to 20% could initially increase costs to the NHS by £11 million over 5 years due to higher expenditure on drugs and the associated costs of monitoring people with the disease. After around nine years, earlier treatment could become cost neutral to the NHS. This increase in earlier treatment could, however, result in productivity gains of £31 million for the economy due to reduced sick leave and lost employment. On average, this could also increase quality of life by 4% over the first 5 years, as measured by quality adjusted life years (QALY) gained'.

How did you implement the project

NRAS established a working group in the East of England comprising NRAS, the National Ankylosing Spondylitis Society, (NASS), the East of England SHA (Medical Director, the Chair of the Long Term Conditions Board) and 6 local Rheumatologists to address the need to develop agreed standards for commissioning services in RA and other inflammatory arthritides. In a cash restricted environment, services would need to be commissioned effectively using best evidence available without increase in financial resources. The standards are not prescriptive as to model of care but establish standards against which commissioned services can be measured, irrespective of the local model adopted. A number of meetings and teleconferences organized by NRAS took place over the course of 2010. NRAS incurred costs of Jenny Snell's travel to the region and the resources used - principally JS and NRAS CEO time. One of the most innovative standards is the notion that all patients with suspected IA should be seen within an MDT approach within two weeks of referral. Such an approach should ensure that as many as possible get access to treatment within the therapeutic window. A barrier to achievement of this goal is the considerable education by the specialist rheumatology community of both the public and general practitioners to recognise the symptoms and signs of early RA.

A commitment to tackle such issues and any misconceptions has been rapidly and successfully addressed. This project has shown that collaboration of patient groups, clinicians and NHS mangers can be very positive. The importance of frontline staff and patients in the design and commissioning of services is not threatening and a better understanding of all the issues that each member of the project team brings to the table, has lead to robust standards of care based upon the NICE guidance that all are committed to.

Key findings

In July 2010 NRAS and the Consultants presented the standards to the SHA Programmes Board. In August the standards were passed by the Board. Jenny Snell and Dr David O'Reilly (West Suffolk NHS Trust) are currently working with the Head of Clinical Strategy and the Long Term Conditions Chair from the SHA, to provide meaningful, locality information around the standards that each Commissioner, be it at the time Primary Care Trusts or Consortia, can then implement.

In November 2010, Sally Standley, Head of Service Development for the East of England SHA, sent the Commissioners in the Region, a QIPP Work Stream Information Report. The purpose of the report 'Improving access and treatment for rheumatoid arthritis: achieving a QIPP opportunity, and delivering NICE guidelines' was to draw attention to the scope for achieving a QIPP productivity and quality improvement, and delivering against NICE guidelines. The report went on to say that, 'the estimated East of England current RA spend is £39.2 million'. The report stated that 'long term pharmaco-economic costs, of patients not having their disease activity regularly reviewed and treatment optimally managed in line with NICE guidance, are very significant due to the impact of preventable joint damage and the patient not being able to remain in work. According to a recent report from NRAS, the estimated loss of productivity costs associated with RA is almost £8 billion per year. The East of England's opportunity share could therefore be as high as £924 million. Significant productivity savings could be realised through fully implementing the multiple technology appraisal TA 195 issued by NICE in relation to the use of biologics in RA patients'. It concluded 'a range of support tools are available to providers and commissioners to support this work, including audit and data collection tools, capacity and demand forecasting models, commissioning toolkits, best practice case studies and the East of England 10 RA Commissioning Standards'.

Key learning points

We know with the right tools and great determination much can be achieved. However, part of the success of this project is due yo our contribution to driving the Rheumatology Futures Project Group which was initially formed in 2007 when there were increasing concerns from patients (through ourselves) and healthcare professionals (particularly through the Royal College of Nursing Rheumatology Forum Chair, Susan Oliver) that there were problems with service delivery in RA and concern over threat to the role of nurse specialists. This led to the development of The Rheumatology Futures Project Group (RFPG) which brought together key stakeholders in the RA community, including: healthcare professionals, patients, patient groups, PCT representatives, and the Government Affairs representatives of the Pharmaceutical Industry. As a direct result of this, the Kings Fund Report was commissioned which launched at approximately the same time as the NICE RA Guidelines were published. The IA commissioning pathway followed along with the NAO Report identifying the variability in care which led to recommendations by the Public Accounts Committee. This then led to further work by NRAS in 2010 including the launch of the 'Economic Burden of RA' report. (see enclosures). Without these tools developed over 3 years, including the NICE guidance at the time of writing, the NAO work and our ongoing follow up work, it would have been much more difficult to give the Commissioners a clear steer as to the quality of service to purchase and productivity gains which could be made. Therefore other organizations should consider developing care pathways if these do not exist. Dr. S. Laitner, Chair of the L TC Board at East of England SHA has also proposed a new model of care designed around a Consultant led Musculoskeletal Hub. The model adopts a new, integrated pathway approach to care which could be replicated for other long term conditions and NRAS are very excited by and supportive of this innovative solution.

Contact details

Ailsa Bosworth
Chief Executive
National Rheumatoid Arthritis Society

Is the example industry-sponsored in any way?