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.