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poses significant risks to health , being associated with a high incidence of serious bone marrow suppression and heart rhythm abnormalities , either of which can be fatal . The mitigation of risk of clozapine treatment therefore requires the provision of a regular monitoring service , with weekly blood samples forwarded to the monitoring service . The drug is usually dispensed weekly or fortnightly only on receipt of a satisfactory blood sample . The establishment of such monitoring requires close collaboration between the pharmacy , nurse specialist and primary care .
The challenges of commissioning and providing services for Parkinson ’ s The 2017 NICE guidance now underlines the multi-disciplinary nature of care in Parkinson ’ s . Physiotherapy , occupational therapy , speech and language therapy , dietician , pharmacist , and neurosurgeon are now all involved . The old model of a Consultant Neurologist or Geriatrician sitting in a clinic seeing a list of patients who have waited for many months for the privilege of being seen once and discharged promptly to the care of a GP no longer works .
Patients and their carers now are entitled to , and expect , a comprehensive and responsive quality service provided from diagnosis to death . The management of chronic neurological diseases has become a major challenge to the NHS and commissioners and providers of neurological services can find that there are conflicts between primary and secondary care as to who takes responsibility for service provision and continuing care . Neurology services in secondary care may not be designed to provide continuing care , and primary care services , already overwhelmed by demand , may struggle with the complexities of neurological treatment and support .
In this context , it is useful to start with the NICE quality statements on Parkinson ’ s disease when designing services ( Box 1 ). As Consultant staff in the NHS are poorly accessible because of the scarcity of that resource and workload demands , adherence to NICE guidance usually requires a ringfenced nursing as well as a medical workforce . Most specialist centres recognise the fundamental value of a Parkinsons ’ nurse specialist resource in order to provide an adequate and responsive service to patients . This is crucial to provide counselling , to advise on treatment , liaise between primary and secondary care , signpost to other teams where required , co-ordinate care and address problems and crises . They may also have an important role in care of the patient undergoing surgery for Parkinson ’ s . Objective demonstration of the value of Parkinson ’ s specialist nursing services is difficult and much of the published research is largely anecdotal , but it has been plausibly suggested that nurse specialist services reduce unplanned admissions and length of stay , as well as facilitating adherence to NICE guidance .
Nurse specialist services have to be well designed and managed . An effective nursing service must be resilient ( that is , not dependent on a single individual ), geographically comprehensive ( that is , accepting patients from defined localities without geographical gaps ) and financially sound . It can be sited in primary or secondary care , and each model has advantages and disadvantages . Services can be cost-effective in secondary care if funded partly or largely on tariff income from nurse-led clinics , a model that may allow some flexibility for services to grow with patient demand . In primary care , service provision less dependent on clinic income and therefore more flexible to provide services in the patients ’ homes , but often reliant on funding from a ‘ block contract ’ that may result in services that become unstable if they cannot respond to increasing service demands . It has been estimated that Parkinson ’ s nurses are cost-saving in the UK , but the model was sensitive to the salary and additional costs of other health professionals ’ time . 12 Commissioners have to be alert to the changing demands on integrated services and good communication between providers and commissioners is mandatory to optimise provision .
Care of patients admitted to hospital with Parkinson ’ s is now frequently recognised as suboptimal . A recent campaign ‘ Get it on time ’ by the support charity Parkinson ’ s UK emphasised the need to get medication on time to avoid fluctuation in clinical state , which may result in delayed discharge or avoidable morbidity , for example from falls or confusion . This is recognised in NICE guidance and in the quality standard for Parkinson ’ s .
The problem of ongoing monitoring of patients with chronic neurological disease is nowhere better illustrated than with Parkinson ’ s disease . Patients are faced with progressive disability and require incremental support , and the condition is characterised by fluctuation and crisis that can be averted only by prompt attention . Some drugs used in the condition , particularly clozapine , require the establishment of fail-safe and accessible monitoring systems which usually require close collaboration between multiple agencies in primary and secondary care , including medical , nursing and pharmacy . While psychiatric units may be familiar with the use and monitoring of clozapine in patients in the community ( as it is a drug often used for refractory psychosis ), psychiatrists are rarely familiar with the particular challenges of treating patients with Parkinson ’ s who are very much more sensitive to the adverse effects of antipsychotic medication than most patients with schizophrenia . Reliance on extending existing commissioned services for clozapine that exist in the mental health services may therefore be misplaced , as such services may not have the necessary expertise to manage the clinical challenges .
Conclusions The provision of a clinical service for patients with Parkinson ’ s diseae compliant with NICE guidelines is a major challenge for any organisation , requiring integration of services across primary and secondary care and also across nursing , therapy and medical disciplines . Patients require information and support from the earliest stages to the last day of palliative care , and there are particular problems for families and carers . Emergency care and duration of hospitalisation can likely be minimised by excellent care from a well-led team . The challenges for leadership and management of the teams are considerable .
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