By Heather Hasthorpe, Rheumatology specialist nurse, Norfolk and Norwich University Hospitals NHS Foundation Trust.
In late 2010 I set up the Nurse Led Treatment Escalation Clinic for Newly Diagnosed Adult Rheumatoid Arthritis Patients. This was in direct response to patient need and overwhelming evidence for ‘Treat to Target’ initiatives and early aggressive treatment intervention to induce clinical remission.
Rheumatoid Arthritis is a chronic, painful, incurable, systemic autoimmune disease of unknown aetiology and affecting any age or gender. The small joints of the body are normally affected causing swelling, pain and stiffness. It should not be confused with the ‘wear and tear’ degenerative Osteoarthritis.
Rheumatoid Arthritis can expose the individual to increased risk of cardio vascular disease, respiratory problems, ophthalmic complications, increased cancer risks and the debilitating symptoms of anaemia associated with untreated chronic disease.
Untreated this potentially life-threatening disease can be destructive, disabling and deforming and causes significant physical and psychological distress. This disease can be likened to cancer in its ferocity in attacking the body.
Rheumatoid Arthritis and its associated problems incurs significant financial burden on the NHS, UK Economy and on the individual and their loved ones, these costs are increased in the current financial climate and when disease is poorly managed.
There have been major treatment advances in the last 20 years from the initial treatment with Non Steroidal Anti Inflammatory Drugs (NSAIDS) such as Aspirin. Today Disease Modifying Anti Rheumatic Drugs (DMARDs) are the 1st line treatment. These drugs act on the immune system to control inflammation, the driver of the disease and which is accountable for its destructive effects. Methotrexate remains the ‘Gold Standard’ drug and is initiated early. Combination and Triple DMARDs will be commenced depending on severity of the disease on presentation. When active disease persists, despite 1st line treatment, patients will be referred for ‘Targeted Therapies’ the Biologic drugs, the newer generation of drugs, which act directly on the inflammatory cells.
The overall aim of treatment is to induce Clinical Remission as defined by DAS28 (Disease Activity Score). This Clinical Outcome Measure is a scoring system, which was developed to assess the severity of Rheumatoid Arthritis. A complex calculation of tender and swollen joints, inflammatory marker ESR and the patients own assessment of their disease ‘activity’ on a 1-10 scale is combined to produce the DAS28 score with a figure >5.1 implying active disease and
Prior to 2010 I began to see patients in my routine follow up nurse clinic that despite having been newly diagnosed and commenced on 1st line treatment within the preceding 12 months had not been reviewed for many months. Many patients were symptomatic and on sub-therapeutic treatment.
Many of these patients were ‘victims’ of the 2004 NHS Improvement Plan, where Hospital Trusts were under increasing pressure to enable capacity to see new patients in order to avoid incurring financial penalties. This had a significant impact on follow-up patients.
I felt I had a professional, moral and ethical responsibility to ensure these patients received the recommended treatment.
Overwhelming evidence was emerging from the wider rheumatology community alongside government guidelines recommending rapid referral on suspicion of disease and ‘Treat to Target’ initiatives with early aggressive treatment Intervention to control the disease, induce remission and to avoid the destructive potential of the disease.
I felt my knowledge and skills could be better utilised, there were no current nurse clinic provision, which addressed these concerns. I therefore decided to set up the Nurse Led Clinic, which was supported by my Clinical Director in Rheumatology Dr Karl Gaffney Consultant Rheumatologist.
I developed a protocol, which would enable me as a non-prescriber to escalate drugs and add in additional treatment in response to active disease. This was agreed and accepted by the Trust. I re-assured management there would be no additional costs incurred as a result of the new clinic; it was merely a change of practice, which I perceived would actually be cost productive.
The Clinic would run once weekly with 6 patients being referred by the Consultant after diagnosis and commencing initial treatment. I would review them at 6 weeks, 3 months, 6 months and 12 months. They would be sooner if needed and had access to me via the Rheumatology Advice Line.
The aims of the Clinic were clear:
• To provide frequent and vigilant monitoring of newly diagnosed patients, who had commenced 1st line treatment.
• To respond promptly to escalate drug dosage and treatment in active disease evidenced by patient history, physical examination and clinical investigation results.
• To provide support and understanding of the disease, its treatment and rationale behind escalation to individuals and their family.
An existing protocol enabled me to administer adjunct IM steroids to dampen down the acute painful distressing symptoms until a therapeutic dose was achieved.
Obtaining the DAS28 at each assessment allowed efficacy of treatment to be assessed, provided data to be reviewed retrospectively and created a basis for prompt referral for biologics should 1st line treatment fail to achieve remission.
In 2012 I undertook a Service Evaluation of the Nurse Led Clinic. This involved extracting retrospective routinely collected clinical data from the hospital notes and the distribution of an anonymous Patient Experience Questionnaire, as patient feedback is essential to ensure quality of service. Data collected was from April 2011-April 2012: (See supporting data).
- 250 referrals were made to the Clinic, which included patients with a variety of rheumatology conditions who had been referred for the close monitoring aspect of the clinic. I isolated 85 definitively diagnosed Rheumatoid Arthritis patients’ data.
- Data extracted revealed that the Early Aggressive Treatment escalation delivered in the Nurse Led Clinic led to significant, sustained improvement in Patient Clinical Outcomes.
- 55% patients achieved clinical remission at 6 months increasing to 60% at 12 months. The remaining patients had acceptable low disease activity.
- Only 2 patients at 6 months and 3 patients at 12 months were referred timely for Biologic therapy as active disease persisted and they fulfilled the requisite criteria.
- There was a 98% patient satisfaction obtained from the questionnaire with patients stating that they felt supported, were treated with dignity and that the clinic was a vital aspect of their rheumatology care.
- A cost minimisation analysis demonstrated the cost effectiveness when 1st line treatments delivered responsively and disease controlled, when compared to potentially costlier drugs and interventions in poorly controlled symptomatic disease.
To conclude the data has definitively demonstrated that the Specialist Nurse in delivering responsive evidence based, patient focussed care can significantly improve Patient Clinical Outcome Measures and Patient Experience in this chronic disease.
The Clinic is an example of best practice and is transferable to any chronic disease in primary or secondary care and embraces the 6 ‘C’ s of Care, Compassion, Courage, Communication, Competency, and Commitment, the UK Chief Nursing Officers vision of a ‘Culture of Compassionate Care’ and acknowledges my commitment and support of the NRAS Rheumatoid Arthritis Responsibility Deal.
There are now 3 weekly Nurse Led Escalation Clinics in Norwich. I plan to set up a Clinic in North Norfolk at Cromer Hospital to enable patients there to gain easier access to this service.
This clinic will be an attractive proposition in 2013 for the Clinical Commissioning Bodies seeking to purchase, cost effective, efficient services that improve patient outcomes and can be undertaken in community settings.
Finally I have summarised several years of tears, frustration, pride and elation in to a few pages! I would be happy to provide any further information.
On behalf of myself and all Rheumatoid Arthritis patients thank you for taking the time to read this, by doing so we have again achieved the main aim of raising the profile and understanding of this disease!
Heather Hasthorpe RGN GCRP MSc Adv Practice.
Rheumatology Specialist Nurse.
Norfolk and Norwich University Hospitals NHS Foundation Trust.
E-Mail (W) firstname.lastname@example.org