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A point of contact for patients and staff

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Lindsey Hawley.

Rheumatology Practitioner, The Royal Bournemouth and Christchurch Hospitals NHS Trust

Name: Lindsey Hawley

Name: Lindsey Hawley

Job title: Rheumatology Practitioner, The Royal Bournemouth and Christchurch Hospitals NHS Trust

Career history:

1975-85: worked as a physiotherapist in London, Canada and Dorset. Experience mainly in intensive care, trauma and orthopaedics.

1986 to present: rheumatology practitioner, Christchurch Hospital, Dorset. Initially part time while raising family. Team leader since 2001.

2004: Elected to council of British Health Professionals in Rheumatology.

Qualifications: MCSP; postgraduate diploma in advanced clinical practice (rheumatology)

How the role evolved
I run my own clinics, caring primarily for adult patients with rheumatoid arthritis, most of whom require treatment with disease-modifying drugs. The practitioners conduct almost all the review appointments, freeing the consultants to see new patients and those with other rheumatological conditions.

The rheumatology practitioner has a unique position within the multidisciplinary team, providing a point of contact for patients, carers and other health professionals. The role is essentially clinical, but job plans must include adequate provision for administration. It is a satisfying job and can be developed to meet the service needs in each locality. Historically, there have been few training opportunities and practitioners have learnt their skills on the job.

At Royal Bournemouth and Christchurch Hospital NHS Trust, all the original practitioners had physiotherapy backgrounds and the posts were created to meet a clinical service need. The post-holders took on tasks that traditionally lay within the medical domain, which was seen as revolutionary at a time when working practices in the NHS were typically rigid.

When the European working time directive came into force in the UK, we realised that a growth in the number of nurse practitioners would be essential to counterbalance the reduction in junior doctors' hours. Initially, the Christchurch clinics were funded from charitable sources. The battle for funding for the posts was hard fought. Once their effectiveness and safety were proven, the health authority agreed to take over funding.

Guidelines on the use of biologic therapies for patients with rheumatoid arthritis, issued in 2002 by the National Institute of Clinical Excellence (NICE), have raised the profile of the rheumatology practitioner and provided the impetus to introduce new posts, although funding is again proving to be a thorny issue.

While clinical trial data provided strong evidence for the short-term effectiveness of etanercept and infliximab, NICE stressed that the long-term impact was still unknown.

Patients continue to require careful screening to ensure that they meet the eligibility criteria for treatment with biologic therapies. These are outlined in the box on the facing page.

The rheumatology service
The rheumatology practitioners at Bournemouth and Christchurch now form an interdisciplinary team - they are drawn from physiotherapy, nursing and occupational therapy backgrounds. Rheumatology practitioner clinics run adjacent to the supervising consultant, so that advice can be sought if necessary.

The unique feature of the service is the use of a graph as a disease management tool that informs decision-making and reduces the risks associated with disease-modifying therapy, such as bone marrow suppression. The charts, which enable trends to be easily spotted, are based on a range of criteria:

- Blood results

- Joint counts - a count of a patient's swollen and tender joints, scored on a scale of 0 to 28

- The health assessment questionnaire: to assess physical function, score range 0 to 3, where 3 is maximum disability

- Pain and function scores.

Patients have access to the practitioners via a helpline, a support group meets weekly and a patient education programme runs twice a year.

Unique role
New courses scheduled to start early in 2005 under the auspices of the Arthritis and Rheumatism Campaign will provide much-needed training opportunities. Details can be obtained from www.arc.org.uk

A typical week for a rheumatology practitioner
There is no such thing as a typical week - my fixed clinical commitment is four clinic sessions but at other times the role is very varied. The five other practitioners work part time, covering an additional nine clinics. Less experienced practitioners may require advice, so I need to be available. Frequently, I see patients who cannot be fitted into existing clinics.

We operate a helpline, which averages 10 calls a day. A receptionist takes messages in the morning and we have an answering machine at other times. Calls are returned as soon as possible. All blood results are graphed and any abnormal ones dealt with. Perhaps the greatest challenge of my job is to ensure that these tasks are done daily, alongside fulfilling the managerial aspects of my role.

I attend the monthly multidisciplinary departmental meeting. This is held on a rolling half-day basis and covers business, clinical cases and either audit or journal club. There is a monthly meeting involving clinicians from the three rheumatology departments in the county, plus a continuing education programme for local practitioners.

Monday
The day starts with the inflammatory arthritis clinic. Each patient is assessed in terms of pain, disease activity, function, and drug toxicity. Physical and psychosocial problems are prioritised and an action plan is drawn up.

A computerised monitoring system is being introduced that will ultimately bring advantages - no more manual checking and charting of blood results, less documentation and an end to dictating letters to GPs. For now, we must run parallel systems, which increases the pressure in a busy clinic, and the software requires some fine tuning.

In the afternoon I return the helpline calls.

Tuesday
My day starts with the connective tissue disease clinic. My role is essentially similar to the other clinics but the focus is on the systemic aspects of disease with careful monitoring of patients' cardiovascular, respiratory and renal functions. I see patients with conditions such as lupus and forms of vasculitis. It is an interesting clinic and usually involves working closely with the consultant.

In the afternoon, there are calls to make, emails to check and results to graph; where abnormalities occur I need to decide what action to take and advise patients by telephone. If necessary, a patient will be brought to clinic for urgent review: if they are very unwell or require further a investigation, I will arrange admission.

Wednesday
My morning is spent in the inflammatory arthritis clinic. Patient education is a major part of our role, and it is important to tailor advice to each individual. It is vital that the patient understands the potentially destructive nature of the disease. Our aim is to gain disease control, eliminating joint swelling and normalising the inflammatory indices. The latter are indicators of a patient's erythrocyte sedimentation rate and C-reactive protein. Both blood tests are surrogate measures of joint inflammation.

Radiological status is assessed annually for the first two years. Effective management of rheumatoid arthritis involves the entire team and referrals are made to occupational therapy, podiatry, physiotherapy or the orthopaedic team. If a change in medication is indicated, I will recommend it to the consultant who then signs the prescription.

Sometimes we may discuss alternatives, using the graph to review a patient's response to treatments. I will use my judgement to alter the dosage and give an intramuscular steroid injection or aspirate and inject a joint, if that is indicated. Practitioners have been taught injection skills by the consultants and are supervised until competent; experienced practitioners now teach junior doctors.

As a team leader there are tasks such as staff appraisal, leave arrangements and training to organise. I report to the directorate manager and attend senior managers' meetings. I'm responsible for our staffing budget and produce a regular statement of our expenditure on biologic therapies.

Thursday
I have no specific clinical commitments today. I may see patients involved in research studies or someone needing urgent review but I try to use this day to tackle ongoing projects such as the patient group directions (PGD) or steroid injections and alteration of medication doses.

The PGDs have been developed with the pharmacy department and will formalise what has become established practice, removing the need for a prescription for each injection.

Friday
I attend the third inflammatory arthritis clinic of the week. We have got to know our patients well over the years and this relationship is an important aspect of chronic disease management. Patient surveys indicate high levels of satisfaction with the continuity of care and the time allocated at clinic visits.

Rheumatic diseases are not high on the political agenda and treatment advances have been painfully slow, but joint-replacement surgery has greatly improved outcomes for people with severe joint destruction. Biologic therapies offer the hope of preventing joint damage in future, although current costs limit their availability and long-term safety has yet to be proven. About 20% of patients do not respond to such therapies, which is a cause of great disappointment and presents a challenge - to regain disease control and help patients to maintain hope for the future.

I spend the afternoon working on the patient education programme, which I enjoy even though it involves a lot of administration and preparation. It is rewarding, as participants frequently comment that they benefit from meeting other people, and evaluation of the programme shows significant improvements in self-efficacy and anxiety scores.

I take a final look at my in-tray at the end of the week, hoping it contains much less than it did on Monday!

NICE guidance
To meet the eligibility criteria for biologic therapies, a patient must:

- Have diagnosis of rheumatoid arthritis

- Have had continued active disease, despite an adequate trial of at least two disease-modifying agents

- Have no exclusions such as pregnancy or high risk of infection.

The guidelines further stress that:

- Patients must be monitored closely

- Treatment will be withdrawn if the patient does not respond after three months of treatment, or in the case of a serious adverse event

- Outcome and toxicity data should be sent to the Biologics Registry of the British Society of Rheumatology every six months.

Source: National Institute for Clinical Excellence. (2002) Rheumatoid arthritis - etanercept and infliximab (No. 36). Available at: www.nice.org.uk/

Policy box
Policy relevant to the role of the rheumatology practitioner

- The NHS Plan (2000) - this includes a statement on flexible working practices crossing traditional barriers of different professional groups

- Crown Report (1999) and the emergence of patient group directions

- NICE (2002) Rheumatoid Arthritis - Etanercept and infliximab (No. 36). Guidance available at: www.nice.org.uk

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