HHE Neurology supplement 2018 - Page 5

What do the guidelines say? Communication In the 2017 guidelines, great emphasis was placed on empowerment and provision of information in ways that are accessible to patients and carers. Since there has been a trade-off between the time available in clinic, especially outside of London where there is a shortage of neurologists, 4 and the provision of comprehensive information; in practice, a nurse specialist service is required to bridge this information gap. clinical team so as to address promptly the problems associated with Parkinsons’ as they arise. As management of the condition improves and people with the condition live longer, the requirement for support and liaison between multiple clinical disciplines gets ever more important. Why do we need a NICE guideline on Parkinson’s? NICE publishes evidence-based recommendations for health and care in England (not Wales or Scotland, although they may also be used there). The express aim of the Institute is to prevent ill health, to promote and protect good health, to improve the quality of care and services and to adapt and provide health and social care services. The guidelines are widely used to define ‘minimum standards of care’ in the UK, so that patients and carers using the National Health Service (NHS) know what they are entitled to receive from healthcare providers. Commissioners and Trusts are expected to adhere to NICE guidelines and to assure the process through regular audit. If this does not happen, then providers would be open to censure, for example by the Health Service Ombudsman in the event of a complaint, and may lose their eligibility to bid for provision of specialised services. Service quality NICE publishes quality standards in the form of statements that are designed for commissioners and providers to identify gaps in service provision and areas for improvement, to facilitate measurement of quality of care and demonstration of high quality care, with the aim to facilitate commissioning of high quality services. Quality statements are reviewed annually, and those for Parkinson’s were last published in February 2018 (Box 1). The quality standards emphasise a responsive point of contact (usually considered to be a specialist nurse), provision of information about impulse control disorders (a common treatment associated issue), involvement of multidisciplinary professional services and treatment on time for in-patients and availability of clozapine for those who develop hallucinosis. Each of these aspects provides organisational challenges for providers. Clinical teams would normally be expected to audit against these standards regularly, and commissioners might be expected to receive assurance that this is undertaken. People with Parkinson’s should have access to clinical monitoring, a continuing point of contact for support, home visits and reliable information for themselves and carers Diagnosis The diagnosis is clinical (that is, depends on history and examination rather than a laboratory tests) and can be difficult because the features can mimic those of other neurodegenerative disorders and those of ageing. The guideline recommends prompt referral of the untreated patient to a specialist. 5 This recommendation is designed to facilitate accurate diagnosis, because treatment disguises the characteristic clinical symptoms of the condition (slowness, stiffness and tremor worse on one side of the body). While this is ideal where patients can be seen promptly, there is a trade-off between referral untreated and the ability of the local neurology service to see patients and assess them in a timely manner. Many neurology and elderly care services in the UK can only guarantee that the patients are seen and treated within the government stipulated 18-week pathway from referral to treatment. The stipulation to refer untreated can therefore result in a patient experiencing avoidable discomfort for many weeks while waiting for an appointment. As a result, this recommendation is sometimes relaxed in practice. The guidelines recognise that diagnosis is uncertain and requires clinical acumen. There is a limited role for the radiological investigation 123 I-FP-CIT SPECT (known as DaTScan ® ) in the differentiation of Parkinson’s from essential tremor. This test should be made available to the specialist, but its use is uncommon in most centres. Pharmacological management Early disease Again the emphasis of the guideline is on informed choice between treatment options, with no clear winner as to the best initial treatment to offer to patients. Each option has risks and benefits, and these must be explained box 1 NICE quality statements February 2018 Statement 1 Adults with Parkinson’s disease have a point of contact with specialist services. Statement 2 Adults with Parkinson’s disease taking dopaminergic therapy are given information about the risk of impulse control disorders, when starting treatment and at least annually. Statement 3 Adults with Parkinson’s disease are referred to physiotherapy, occupational therapy or speech and language therapy if they have problems with balance, motor function, activities of daily living, communication, swallowing or saliva. 5 HHE 2018 | hospitalhealthcare.com Statement 4 Adults with Parkinson’s disease who are in hospital or a care home should take levodopa within 30 minutes of their individually prescribed administration time. Statement 5 Services for adults with Parkinson’s disease provide access to clozapine and patient monitoring for treating hallucinations and delusions.