Dr Chris Taggart revisits the NICE Parkinson’s disease guideline to assess whether its key priorities have been addressed locally

In its guideline on Parkinson’s disease: diagnosis and management in primary and secondary care published in June 2006, NICE set out some key priorities for implementation.1 A year ago I gave my personal view of the guidance in Guidelines in Practice,2 and the quick reference guide from NICE3 has proved to be useful on my surgery PC desktop, but has the guideline been implemented effectively enough to result in improved services for patients with Parkinson’s disease (PD) in Coventry?

Key priorities in the guideline

Seven key areas were identified by NICE for implementation. These are:1

  • referral to a specialist with expertise in the differential diagnosis—patients should be referred quickly and untreated
  • diagnosis and review—regular reassessment of the diagnosis should take place, which might be reconsidered in the presence of atypical clinical features; the differential diagnosis should not be reached by challenge test with acute levodopa and apomorphine
  • regular access for patients, perhaps through a PD nurse specialist, to allow clinical monitoring and adjustment of medication; to provide a point of contact for support, with home visits as appropriate; to be a source of reliable information on subjects of concern to patients and their carers
  • particular consideration should be given to improvements of balance, movement, mobility and activities of daily life, and enhancement of aerobic capacity
  • access to occupational therapy—with special regard to: roles at work and in the family; transfers and mobility; self-care; improving safety and motor function; and allowing assessment of cognitive function and intervention as appropriate
  • provision of speech and language therapy—to help improve vocal loudness and pitch, and intelligibility of speech; ensure effective communication; and support the patient so that they can eat and drink safely and without inhaling foodstuffs
  • consideration of the palliative care needs of patients with PD throughout the phases of their illness, and enabling access of patients and carers to appropriate healthcare workers for discussion of end-of-life issues.

Referral, diagnosis, and review

The guideline development group proposed that in cases of suspected mild PD, referral should result in the patient being seen within 6 weeks, but this delay should reduce to 2 weeks for new referrals in later disease or where the case is more complicated.1 It would have been pleasing to report that this is now the case, but unfortunately the ‘Choose and Book’ (C&B) system (www.chooseandbook.nhs.uk) does not accommodate these aspirations, and, locally, patients are often seen just within the 3-month target unless the GP makes direct contact with our excellent local PD specialist, in which case the aspirations are usually exceeded.

Often PD clinics are called ‘movement disorder clinics’, which adds to the confusion for the referring GP. As for referring to a named consultant via C&B, I hope your experience has been better than mine, which has been that naming a specific consultant is invariably ignored as the referrals are pooled.

When the patient does eventually get through to see the expert he or she is given a clear diagnosis, which is not always PD. In Coventry, the patient’s reviews are often shared between the neurologists and the PD nurse specialists and take place every 6–12 months, depending on severity and complications. Sometimes the diagnosis of PD is subsequently found to be incorrect and the treatment would not have been appropriate and could have made the patient’s condition worse. In fact a failure to respond to PD treatment should alert the doctor or nurse specialist to the possibility that the patient might not have PD. Differential diagnoses include:

  • essential (benign or familial) tremor
  • progressive supranuclear palsy
  • multiple systems atrophy
  • post-encephalic cerebrovascular Parkinsonism
  • corticobasal degeneration
  • Wilson’s disease.

Parkinson’s disease nurse specialists

We are fortunate in our practice to have two PD nurse specialists, who have revolutionised the support of local patients with this condition by bringing care into the community. They have acted as a bridge between GPs, neurologists, pharmacists, and patients with their carer, providing reliable information on clinical and social matters.

As any GP will know, the treatment for PD is complex and with new agents frequently appearing it is best left to the experts—the neurologists and the PD nurse specialists. The nurse-prescribing initiative has helped these specialist nurses (within local shared protocols and with the agreement of the patient’s GP) to prescribe agents that have not yet been included in the hospital formulary. In addition, they have been able to vary the dosage of the medication without having always to refer back to the neurologist. The PD nurse specialist will communicate with the neurologist or GP if they feel they need support.

Access to physiotherapy, occupational therapy, and speech and language tuition

Sadly, over the past year, access to these areas of therapy has become less achievable for us. The local Coventry health economy has been crippled by the annual private finance initiative service charges of over £54 million. As a consequence there has been a recruitment freeze and redundancies, which have hit these community services badly. I dread one of the PD nurse specialists leaving as the service would collapse. The idea of taking on the proposed third, much-needed PD nurse specialist is still a pipe dream.

Provision of palliative care

At present, palliative care in our region depends on the the patient’s carers, GP, and district nurses in conjunction with the Macmillan nurses. We are currently in the process of engaging with the local palliative care consultant to improve this area of care.

Non-motor symptoms

In addition to the key priorities set out above, the NICE guideline introduced the concept of non-motor symptoms (NMS) of PD. This was an area new to most GPs, but which is often more troublesome to patients than the motor features of bradykinesia, rigidity, and resting tremor, which GPs tend to concentrate on. The guideline recommends key features to look out for, and these are listed in Box 1.

Local GPs in our area are now more aware of NMS, and the PD nurse specialists routinely hand out the NMS questionnaire from the Parkinson’s Disease Society to patients.4 If you treat their hitherto ignored NMS, patients are always very grateful and are often happier than if your treatment helps to improve their motor symptoms.

Box 1: Non-motor symptoms of Parkinson’s disease1

Mental health

Depression
Psychotic symptoms
Dementia

Sleep disturbance

Daytime hypersomnolence
Nocturnal akinesia

Falls

Autonomic disturbance

Urinary dysfunction
Weight loss
Dysphagia
Constipation
Erectile dysfunction
Orthostatic hypotension
Excessive sweating
Sialorrhoea

Putting patients and carers first

The guideline says that management of PD is centred around patients and carers, and it is only as good as they judge it to be. It urges healthcare professionals to take account of the needs of individual patients, giving them a chance, where possible, to make informed decisions about their care. It endorses the provision of evidence-based information to both patients and their carers.1 Openness, explanation, and honesty make a big difference, which is being achieved locally by careful and time-consuming counselling from our PD nurse specialists.

Has the guideline been implemented effectively?

Would our patients with PD have seen an improvement in management of their care over the past year? The sustained committed hard work of our two PD nurse specialists (with the clinical support of the PD specialist and myself), despite no extra resources, has gradually improved the holistic care of patients with PD, but this is difficult to evaluate as the PCT is more concerned with data on bed days saved or appointments saved.

Sadly, despite the best endeavours of clinical and nursing staff, the funding crisis in the NHS has led to a reduction in services such as physiotherapy, occupational therapy, and speech and language therapy, which leads to even more frustration. The guideline was not presented with funding in place for the services it was promoting, and unfortunately, hopes for more resources next year also seem misplaced. In future, the PCT should be judged by patients with PD and their carers on how well it implements the NICE guidelines, rather than on the current system of empty wishes!

  • Implementing NICE guidance involves more than just specialist referral and pharmacotherapy
  • Specialist nurse support, if provided via hospitals, is charged at the full tariff rate1 = £288 (new), £129 (follow-up) for geriatric medicine code
  • Practice-based commissioning groups should consider commissioning community-led nurse and therapy services at local tariff rates to achieve better care
  • Acute admissions for patients with Parkinson’s disease are expensive: tariff1 = £5369 (complex elderly with neurological diagnosis)
  1. National Institute for Health and Care Excellence. Parkinson’s disease—diagnosis and management in primary and secondary care. NICE Clinical Guideline 35. London: NICE, 2006.
  2. Taggart C. Parkinson’s disease patients should be referred untreated. Guidelines in Practice 2006; 9 (8); 12.
  3. National Institute for Health and Care Excellence. Parkinson’s disease—diagnosis and management in primary and secondary care. Quick Reference Guide. NICE Clinical Guideline 35. London: NICE, 2006.
  4. Non-motor symptoms of Parkinson’s questionnaire. Available online at www.parkinsons.org.ukG