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Reducing the toll of Parkinson's

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People with Parkinson's disease have complex long-term needs. Kirsten Turner is one of a growing number of nurse specialists helping to transform their care

The last decade has seen a major increase in the number of Parkinson's disease (PD) nurse specialists. There are now 206 in the UK according to The Parkinson's Disease Society (PDS), which is championing the post and aims to have 240 in place by the end of 2006.

'The more progressive primary care trusts have led the way by appointing PD nurse specialists, and others have followed,' says Kirsten Turner, a PD nurse specialist at Havering PCT and lecturer/practitioner at London South Bank University (LSBU).

Ms Turner has seen her role evolve from one that was barely recognised when she took it up 11 years ago, to a job that is now widely acknowledged and valued.

Endorsements from the government have supported the role. The National Service Framework for Long-term Conditions, published in March this year, highlights the role of specialist nurses in 'providing effective and cost-effective advice and care for people with progressive conditions such as MS or Parkinson's disease.' The National Institute for Health and Clinical Excellence guidelines for Parkinson's disease - due for publication next year - are expected to include a section on PD nurse specialists.

Recognition of the benefits of these nurses is coupled with greater general awareness of PD and a higher profile of the disease. Most recently, PD has been back in the news with the launch of rasagiline (Azilect), a second-generation, irreversible inhibitor of monoamine oxidase-B (MAO-B), the enzyme that breaks down dopamine in the central nervous system.

This new PD treatment option, which was launched in the UK in July, offers hope to both newly diagnosed patients and those with more advanced disease. Studies demonstrate the drug's efficacy, tolerability and safety when used as monotherapy in early-stage disease and as an adjunct to levodopa, the gold-standard therapy in more advanced disease.

As a PD nurse specialist, Ms Turner stresses that it is vital to keep up to date with new treatments. New developments always bring excitement as, despite the wide array of anti-Parkinsonian drugs available, every treatment has drawbacks. In some cases the side-effects can be almost as problematic as the disease symptoms.

'Patients are often aware of new treatments, so it is our job to fill in any gaps,' explains Ms Turner, who served on the rasagiline PD nurse advisory board. 'We must also communicate with patients about any treatment side-effects, particularly as these don't always emerge initially.'

A report published by the PD Society in 2004 acknowledges that the PD nurse specialist is 'uniquely placed to monitor the effectiveness of changes in medication and treatment, and to provide information and education'. Although a key part of the role, medication review is certainly not the only task for PD nurse specialists. The Parkinson's Disease Nurse Specialist Association (PDNSA) - which Ms Turner helped to set up in 1999 - lists a number of responsibilities. These range from implementing individual care plans for patients and creating accessible services to providing support and advice to health care professionals, and initiating research.

'I need to look at the patient as a whole person, referring her or him as necessary to other team members, such as the physiotherapist, dietitian, GP or back to the PD consultant,' says Ms Turner. 'We also offer a patient support service. Only last week one patient burst into tears when she met fellow PD patients because she was so relieved to know she was not alone.'

It is having the opportunity to positively affect patients' lives that Ms Turner finds the most rewarding aspect of her role. As a progressive, neurodegenerative disorder, often with complex treatment regimens, PD can have a significant emotional and physical impact on both patients and their families.

Recently, one of Ms Turner's patients was experiencing an increasingly fluctuating response to his levodopa medication (as is usual after a few years of levodopa use). 'The patient's wife contacted me so I spoke to his neurologist and his GP about the treatment regimen. It wasn't straightforward, as initial changes led to further side-effects including hallucinations and mobility problems. But eventually, after further treatment changes, the patient's condition stabilised and we avoided a hospital admission. I now follow him up in the community.'

Ms Turner's role has not always been community-based. When she first became a PD nurse specialist at The National Hospital for Neurology and Neurosurgery in London, her work was mainly hospital-based. 'Now, in Havering, we have about 900 patients and the emphasis is on keeping them out of hospital. About a third of the patients have been discharged into the nurse's care,' she explains. Ms Turner also teaches nurses about the PD nurse specialist role. The annual course at LSBU comprises two two-week modules.

PD nurse specialists come from different backgrounds but many have experience in neurology or care of older people. Ms Turner began her nursing career in neurosurgery and neuromedicine, before accepting a post as a PD specialist at the National Hospital. 'I was attracted to the job because Parkinson's is such an interesting disease, with so much research and innovation. I also like the autonomy that this role offers.'

Despite the growing need for PD nurse specialists, Ms Turner says that it is not always easy to find the right people for the job. 'There are some positions that have remained vacant for a while,' she admits. 'It is a leadership role. You might have to start the service from scratch and you need to be confident and diplomatic when giving advice. It is definitely a challenging role - but for the right person it is enormously rewarding.'

How do I become... a parkinson's disease nurse specialist?

THIS COULD BE FOR YOU IF: you are interested in neurology or care of older people, and are used to working with patients who have complex needs.

YOU NEED TO BE GOOD AT: communication, working autonomously, leadership and planning.

YOU NEED TO HAVE: the PDNSA recommends PD nurses are at least working at G grade, with proven management experience at ward level or other. You should also have a specialist nursing diploma or related degree.

YOU DON'T NEED TO HAVE: in-depth knowledge of PD - this can be acquired.

OTHER SIMILAR JOBS YOU COULD CONSIDER: District nurse working in PD care, neurology nurse or MS nurse specialist.

WHERE TO FIND MORE INFORMATION:

Parkinson's Disease Society 020 7931 8080, visit www.parkinsons.org.uk

The Parkinson's Disease Nurse Specialist Association - email stella.gay@eeandms-pct.nhs.uk

For further information about the LSBU PD nurse specialist course, e-mail kirsten.turner@haveringpct.nhs.uk

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