Introduction
Point of contact with specialist services
Information about impulse control disorders
Referral to physiotherapy, occupational therapy or speech and language therapy
Levodopa in hospital or a care home
Access to clozapine for treating hallucinations and delusions
References

 

Introduction

According to new research from Parkinson’s UK, the number of people diagnosed and living with Parkinson’s is increasing. It estimates that in 2018 around 145,000 people—one in 350 adults—in the UK will be diagnosed with the condition. Parkinson’s diagnoses are also set to rise by nearly a fifth by 2025.1

The increase is due to a growing and ageing population. Therefore, a new quality standard on Parkinson’s disease from NICE is welcome news.2

It follows the updated NICE 2006 guideline for Parkinson’s published in August 2017.3 This contained clearer guidance on diagnosis, impulsive and compulsive behaviour management, and non-motor symptoms.3 It also acknowledged the importance of access to therapy input for patients from the start. The quality standard aims to build on this and provides a set of statements that can be used to improve services and the treatment of people with Parkinson’s.

 

Quality statement 1: Point of contact with specialist services

The guidance states that a point of contact with specialist services will facilitate continuity of care and ensure that adults with Parkinson’s disease have ongoing access to information, advice, care and support when they need it. This will support self-management and informed decision-making and will help to ensure that individual needs are proactively reviewed and managed. The point of contact could be a Parkinson’s disease nurse specialist.

The take away message for service providers (such as hospital elderly care services, neurology services and NHS community providers) is that adults with Parkinson’s disease will have ongoing access to a point of contact with specialist services. Providers should ensure that, where possible, the point of contact for adults with Parkinson’s disease is a healthcare professional who they already know, and that response times are clear.

Healthcare professionals (such as Parkinson’s disease nurse specialists, community matrons and allied health professionals) should provide ongoing support and information about clinical and social matters to adults with Parkinson’s disease within agreed response times. Support should include clinical monitoring and medicines adjustment, and home visits when appropriate.

Professor Richard Walker, Consultant Physician at North Tyneside General Hospital, and member of the NICE Guidelines Development Committee and the Quality Standard Advisory Committee, said: “This statement backs up what was said in the 2006 guidance that people should have specialist input and shouldn’t just be managed by their GPs. Instead, patients should be referred for diagnosis and choose appropriate drug treatment. Going forward, Parkinsons Disease specialist nurses will ideally be the main contact, but they will be aided by specialist support.”

 

Quality statement 2: Information about impulse control disorders

This quality standard discusses how dopaminergic therapy, especially with dopamine agonists, is associated with a risk of developing impulse control disorders. NICE says it is important to discuss this risk and provide information to adults with Parkinson’s disease, and their family members and carers, when starting treatment and at least annually. This will help them to recognise the symptoms and know where to get help if these develop.

Service providers (such as hospital elderly care services, neurology services and general practices) should ensure that healthcare professionals are aware of the need to provide oral and written information about the risk of developing impulse control disorders to adults with Parkinson’s disease when starting dopaminergic therapy (not just dopamine agonists) and to discuss this with them at least annually. Providers should ensure that processes are in place to provide this information and include family members and carers in the discussion, if appropriate, so that they are aware of the symptoms and know where to get help if these develop.

Healthcare professionals (such as neurologists, elderly care consultants, Parkinson’s disease nurse specialists, GPs, allied health professionals and pharmacists) should also provide oral and written information about the risk of developing impulse control disorders and discuss this with them at least annually. They should also provide information for family members and carers if appropriate.

Information should be given about:

  • The different types of impulse control disorders (for example, compulsive gambling, hypersexuality, binge eating and obsessive shopping)

  • The increased risk of impulse control disorders developing with dopamine agonists

  • The risk that impulse control disorders may be concealed by the person affected

  • Who to contact if impulse control disorders develop

  • The possibility that if problematic impulse control disorders develop, dopamine agonist therapy will be reviewed and may be reduced or stopped.

Professor Walker said: “A lot of our Parkinson’s patients will have impulse control disorders, but often they won’t divulge it so we need the family input on this. It was important that this quality standard was included because without written documentation that these risks were discussed with the patient before starting treatment, a physician could open themselves up to litagation if problems later arose.

“All Parkinson’s disease drugs can potentially cause impulse control disorders, but they are most likely with dopamine agonists. They occur in less than 10% of people and are only troublesome in less than 5% of people, so dopamine agonists are still prescribed to patients. It is, however, important that patients and their carers are aware of the impact of these disorders and the symptoms and signs to look out for on a day-to-day basis.”

 

Quality statement 3: Referral to physiotherapy, occupational therapy or speech and language therapy

NICE states that adults with Parkinson’s disease should be 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.

Adults with Parkinson’s disease may experience a wide range of symptoms. Physiotherapy, occupational therapy and speech and language therapy can help people to manage their symptoms, maintain their independence and avoid hospital admission. After a referral to therapy services, it is important to ensure that therapists are included as part of the person’s multidisciplinary team.

Service providers (such as hospital elderly care services, neurology services, general practices and NHS community providers) should ensure that adults with Parkinson’s disease have regular assessments of balance, motor function, activities of daily living, communication, swallowing and saliva. If problems are identified they should be referred for physiotherapy, occupational therapy or speech and language therapy specific for Parkinson’s disease.

Healthcare professionals (such as neurologists, elderly care consultants, Parkinson’s disease nurse specialists and GPs) need to be aware of local referral pathways to physiotherapy, occupational therapy and speech and language therapy for adults with Parkinson’s disease. Healthcare professionals should also carry out regular assessments of balance, motor function, activities of daily living, communication, swallowing and saliva for adults with Parkinson’s disease and refer them for physiotherapy, occupational therapy or speech and language therapy specific for Parkinson’s disease if problems are identified.

Professor Walker said: “Physiotherapy was in the 2006 guidance and this meant that we could push our trusts to invest in a specialist physiotherapy service for our Parkinson’s patients and this has been invaluable. If a service like this is mentioned in a NICE guidance it is quite empowering. Hopefully this quality standard will do the same thing. Occupational therapy and speech and language therapy are also important for Parkinson’s disease patients. Many have swallowing problems and this can lead to aspiration and pneumonia, which is a common cause of admission to hospital. We would like these therapries to be given by Parkinson’s disease specialists where possible, but services are very stretched so this might not happen in all trusts. Parkinson’s UK have also been doing some work on this with their Excellence Network Working Groups.”

 

TABLE 1 NICE GUIDANCE ON MANAGING DOPAMINERGIC THERAPY IN PEOPLE WHO HAVE DEVELOPED AN IMPULSE CONTROL DISORDER3

If a person with Parkinson’s disease has developed a problematic impulse control disorder, seek advice from a healthcare professional with specialist expertise in Parkinson’s disease before modifying dopaminergic therapy.

Discuss the following with the person and their family members and carers (as appropriate):

  • How the impulse control disorder is affecting their life
  • Possible treatments, such as reducing or stopping dopaminergic therapy
  • The benefits and disadvantages of reducing or stopping dopaminergic therapy.

When managing impulse control disorders, modify dopaminergic therapy by first gradually reducing any dopamine agonist. Monitor whether the impulse control disorder improves and whether the person has any symptoms of dopamine agonist withdrawal.

Offer specialist cognitive behavioural therapy targeted at impulse control disorders if modifying dopaminergic therapy is not effective.

 

Quality statement 4: Levodopa in hospital or a care home

According to the quality standard, 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.

Serious complications can develop if levodopa is not taken on time. These include acute akinesia and, if delays are significant, neuroleptic malignant syndrome. These complications can lead to increased care needs and increased length of stay in hospital or a care home.

Service providers (hospitals and care homes) need to ensure that adults with Parkinson’s disease are identified on admission so that their requirements for levodopa can be accurately identified and monitored to reflect timings before admission. This should include an assessment of self-medication. Providers should ensure that staff are trained to understand the importance of taking levodopa at the appropriate times, and to report any medicines-related patient safety incidents.

Health and social care practitioners (such as doctors, nurses, pharmacists, and care home managers and staff) need to ensure that adults with Parkinson’s disease have an accurate medicines chart that reflects timings for levodopa before admission. Practitioners should support adults with Parkinson’s disease to take levodopa on time, which may include self-medication. Practitioners should report any medicines-related patient safety incidents for adults with Parkinson’s disease.

Professor Walker said: ‘ When patients are admitted acutely to hospital this can be an issue. Often drug ward rounds will be at different times to when a patient normally takes their medication. Some hospitals do allow self administration of drugs, but patients who come into hospital are usually confused. Care homes in comparison have more predictable work loads and the day is planned so it is less of an issue there.

“Parkinson’s UK have been hot on this campaign and it is top of the agenda for many. The reason is because when patients are ill, it has a knock-on affect to their symptom control. If they then miss their medication, complications are made worse. It can be a vicious circle as it takes a long time to get them back to where they were.”

 

Quality statement 5: Access to clozapine for treating hallucinations and delusions

NICE says that services for adults with Parkinson’s disease should provide access to clozapine and patient monitoring for treating hallucinations and delusions.

Medicines for Parkinson’s disease can cause hallucinations and delusions. If these symptoms of psychosis are not controlled adequately, they can lead to permanent admissions to care homes. It is therefore important that specialist services ensure adults with Parkinson’s disease can access clozapine and the required patient monitoring if needed. As specialist Parkinson’s services may not be able to provide this directly, they should agree with other local services how access will be provided and ensure that the specific needs of adults with Parkinson’s disease (such as the need for a lower dose) are understood and met.

Service providers (such as hospital elderly care services and neurology services) should ensure that adults with Parkinson’s disease can access clozapine and patient monitoring for treating hallucinations and delusions. This may mean joint arrangements with mental health services are needed. Providers should ensure that healthcare professionals are aware that adults with Parkinson’s disease need lower doses of clozapine than adults without Parkinson’s disease.

Healthcare professionals (such as neurologists, elderly care consultants and Parkinson’s disease nurse specialists) should follow local processes to provide access to clozapine and patient monitoring for adults with Parkinson’s disease and hallucinations or delusions if needed. If this means a referral to another service, healthcare professionals ensure that the need for a lower dose of clozapine in adults with Parkinson’s disease is understood.

Professor Walker concluded: “We could have made 50 quality statements, but I am pleased that the quality standard relates to important aspects of care for people with Parkinson’s and hope they will help to improve service quality across England and Wales.”

 

Alison Bloomer

Conflict of interest: none declared

 


References

1. https://www.parkinsons.org.uk/sites/default/files/2018-01/CS2960%20Incidence%20and%20prevalence%20report%20branding%20summary%20report.pdf

2. https://www.nice.org.uk/guidance/qs164

3. https://www.nice.org.uk/guidance/ng71