Primarycare leaflet6.qxd

THIRD EDITION SEPTEMBER 2003
A guide for primary care teams developed by The Primary Care Task Force for the Parkinson’s Disease Society It is well known that Parkinson’s is a progressive neurological condition affecting movementand self-expression, however, it is less well known that it can devastate daily life forpatients and carers.
It affects about 2:1000 people overall but up to 1:100 of the elderly and up to 1:10 nursinghome residents. One in 7 patients will be diagnosed under 50 years of age.
Parkinson’s is progressive, disabling and distressing. Appropriate management and planning
right from the start can prevent some of the most distressing features. Team working can
address and solve most of the problems and can help the busy GP to deliver better care,
cost effectively. The management of the disease can be planned in four stages1:
But remember each case is individual. Allow extra time for discussion with patients and carers. Care planning is important for all parties – patients, carers and clinical staff.
Early recognition – what to look out for: Clinical Features: SLOWNESS z STIFFNESS z TREMOR z LOSS OF BALANCE
Each case will be different!Some symptoms may be difficult to distinguish from old age or a number of similar conditions (parkinsonism). Some may present insidiously, others with falls or difficulty coping, frozen shoulder or one of the above symptoms.
On suspicion of diagnosis – what to do: Tell the patient of your suspicion of ‘parkinsonism’ and the need for confirmation by referral.
Obtain the patient’s perspective: what do they understand? What would they like to ask?Check repeat prescriptions for Stemetil™ and other drugs that can cause parkinsonism(see back page). Think twice before prescribing.
There is rarely any urgency to prescribe. It is usually better to delay until the diagnosis andcare plan have been agreed with the specialist.2 Parkinson’s Disease Society, 215 Vauxhall Bridge Road, London SW1V 1EJ z Tel: 020 7931 8080 Fax: 020 7233 9908 z E-mail: [email protected] z Website: www.parkinsons.org.uk Helpline: (freephone) 0808 800 0303 (textphone) 020 7963 9380 Primary Care Team Priorities
Primary Care Team Priorities
z Watch out for complications (see above right) z Nursing assessment (at home or clinic) to z Establish access and relationships with specialist z Carer support – consider health and social care z Define follow up arrangements with patient assessment (Appropriate tools exist for the measurement of carer health and support, e.g. carer strain index) z Communicate information about the disease z Prevention of complications (see above right) Patient Concerns
Patient Concerns
z Driving (must inform the DVLA and insurers) z Inheritance of the disease (familial inheritance is rare, but some families may be genetically z Signposting to benefits, including advice Referral
Referral
Consider further referrals to the multi-disciplinary team: z Planning appropriate management, including z Consider referral to the most appropriate department with special interest in Parkinson’s z The key point is the interest and expertise of
the individual doctor, the availability of the multi-disciplinary team and specialist nursing support1,2,3. This may be a neurologist, a geriatrician or a physician with an interest z Nurse specialist assessment (at home or clinic) to provide information/education/support to z Referral to Parkinson’s Disease Society z Referral to Parkinson’s Disease Society PRINCIPLES UNDERLYING THE EFFECTIVE CO-ORDINATION OF CARE i.e. DISEASE MANAGEMENT
The role of key worker should be locally agreed – the person performing this role should be identified and may change with circumstances. The nurse specialist can provide an effective link between primary and secondary care, helping patients and carers to make the best use of available resources.
REFERENCES: 1. MacMahon DG, Thomas S. J Neurol (1998) 245 [suppl I]: S19-22 2. The PD Consensus Working Group, Bhatia K, Brooks D, et al. Hospital Medicine 59: 469-480 (1998) ¨ Deteriorating function – immobility, slowness, withdrawal from activities, communication difficulties ¨ Loss of drug effect, motor fluctuations (end of dose fading, on/off effects), involuntary movements (dyskinesias)¨ Confusion, depression, anxiety, hallucinations, memory changes ¨ Constipation, incontinence, weight loss, hypotension, swallowing problems Primary Care Team Priorities
Primary Care Team Priorities
z Consider dopaminergic drug reduction or withdrawal z Several drugs may need to be co-prescribed and z Relief of symptoms and distress in patients z Address problems directly related to the disease z Support for patients and carers (review carer z Ensure patient and carers have all the information Referral
Referral
The specialist team is now likely to be taking a major Patients and carers need appropriate support: role. The complexity of the disease demands skilled management of an increasingly complex drug regimen.
z Social services to address needs resulting from z Establish access and relationship with secondary z Care may be needed at home, nursing home z Neurosurgery may need to be considered z Good communication between primary and z Be alert for any complicationsz Reassessment by district nurse in liaison with RESPONSIBILITIES OF THE KEY WORKER INCLUDE:
z Accessibility to the individual and carer z Co-ordination and liaison, management of resources: z Provision of information about Parkinson’s Disease Society (PDS) medical, nursing, therapists, drugs, diet z PDS Helpline FREEPHONE 0808 800 0303 TEXTPHONE 020 7963 9380
3. PDNSA. The Developing Role of the Parkinson’s Nurse Specialist. Royal College of Nursing (1999) 4. Parkinson’s Disease Society of the United Kingdom. The Drug Treatment of Parkinson’s Disease (2003) Principles
Parkinson’s inevitably progresses
More levodopa = more late side effects
Parkinson’s is a progressive condition. The rate of Using high doses to achieve complete absence of deterioration tends to be greatest in those who present symptoms produces the long-term side effects of with akinesia/rigidity and/or early postural instability.
Levodopa works but only for so long
Polypharmacy
Levodopa can have a dramatic effect in Parkinson’s.
Several drugs can modify the response to levodopa.
Typically, its effectiveness begins to wear off after four As the condition deteriorates, multiple drug therapy to five years, commonly associated with dyskinesias becomes almost inevitable, but needs careful titration and fluctuations. Lower doses, i.e. less than 500mg s), Inger Smith (Physiotherapist & carer), Dr Rod , Health Programmes & Primary Care Development) daily are less likely to produce these long-term problems.
The drugs used in Parkinson’s are fully discussed elsewhere 2,4 and the British National Formulary. Some brief comments are included here. Levodopa: Sinemet™, Madopar™
Dopamine agonists:
The combination of levodopa and an enzyme inhibitor Apomorphine, Bromocriptine, Cabergoline,
has revolutionised the treatment of Parkinson’s. Lisuride, Pergolide, Pramipexole, Ropinirole
It still remains the gold standard for management.
These can be used either as monotherapy or in Those with rigidity and bradykinesia generally addition to levodopa. The perception that the clinical respond best. Tremor may be difficult to suppress.
response is less than with levodopa, and the higher incidence of side effects, has been challenged by an (GP), Professor Leslie J Findley (Neurologist), Lizzie Graham (P Inhibitors of MAO or COMT enhance and prolong its recent trial findings. They may be valuable to avoid effect and are thereby dopa sparing. Direct agonists the consequences of long-term levodopa treatment, used alone may avoid long-term, levodopa-related and also as an ‘add-on’ therapy in patients whose treatment problems, but usually need to be combined response to levodopa is failing or fluctuating. with levodopa in due course for satisfactory control.
They need to be gradually titrated, and Domperidone MAO inhibitor: Selegiline
is useful during the titration to counteract nausea.
This monoamine oxidase inhibitor (Type B) was Subcutaneous injections of apomorphine are used thought to slow the progress of Parkinson’s if used when patients are refractory to oral medication. from first diagnosis. However, one study showed Anticholinergics
an unexpectedly high mortality rate with combined Have an additive therapeutic effect with levodopa.
levodopa/selegiline therapy after three years, possibly s Disease Nurse S Thomas (Nursing Policy & Practic May be useful in younger patients with tremor, due to autonomic side effects. It still has a role in early but they have virtually no place in the elderly
and late Parkinson’s, but its place should remain under because they can cause mental confusion and scrutiny, and should be slowly reduced and stopped if also worsen glaucoma and prostatism. A dry mouth confusion, falls or hypotension occur. Zelapar™ is a more , Dr Beverley Castleton (Geriatrician), Dr Christopher Dunst recently introduced buccal melt preparation – the dose is1.25mg rather than 5-10mg of the oral preparation.
Amantadine
May be useful in the younger mildly affected COMT inhibitor: Entacapone
patient, but often loses its effect after a few months.
This inhibitor of the alternative pathway for dopamine It usually has fewer side effects in younger patients breakdown can smooth out fluctuations, and permit and can be used for mild akinesia and rigidity in a reduction of levodopa dose (typically by 30-50%).
some younger patients with tremor. Also used to Beware of exacerbation of dyskinesia or diarrhoea.
Drugs that should be avoided by people with suspected Parkinson’s4 They are often prescribed for nausea or vomiting, dizziness, depression or confusion. The only safe oral anti-
emetics are Domperidone (Motillum™) and the 5HT3 antagonists Granisetron, Ondansetron and Tropisetron.
Chlorpromazine (Largactil™); Fluphenazine
Cautions:
(Motival™, Motipress™, Moditen™); Flupenthixol
Monoaminoxidase A inhibitors MAOI(A)s do not (Fluanxol™, Depixol™); Haloperidol (Serenace™,
worsen Parkinson’s but should not be given with Haldol™); Metoclopramide (Maxolon™);
levodopa as they may provoke adverse effects.
Prochlorperazine (Stemetil™); Perphenazine
The newer antipsychotics such as Clozapine (Triptafen™, Fentazin™); Pimozide (Orap™);
tephen Henry (GP), Dr John Maguire (GP), Dr Keith Munro (GP), Carolyn Noble (Parkinson’ (Clozaril™), Olanzapine (Zyprexa™), Quetiapine
Sulpiride (Dolmatil™); Thioridazine (Melleril™);
(Seroquel™), and possibly Sulpiride (Dolmatil™) may
Trifluoperazine (Parstelin™, Stelazine™).
cause fewer problems than the conventional ones,
but should be used carefully in very low doses.

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