A survey of Parkinson’s disease nurses working in the East Midlands
by Dr Christine Helen Taylor
Parkinson’s disease is one of only a few disorders which can cause physical and mental health issues in equal measure however traditionally Parkinson’s disease services have focused on the motor symptoms perhaps at the expense of the non-motor symptoms which include psychiatric symptoms.
In many respects Parkinson’s disease is the quintessential neuropsychiatric disorder. There are a wide range of psychiatric symptoms which can occur in Parkinson’s disease including depression and anxiety, psychosis, apathy, sleep issues, impulse control disorder, cognitive issues and dementia and these can cause considerable disability and negative impact on quality of life for patients.
People with Parkinson’s disease may not identify the non-motor symptoms as being part of their Parkinson’s disease particularly when the focus in Parkinson’s disease clinics is often on control of motor symptoms. This can further lead to neglect of mental health issues in Parkinson’s disease. A lack of confidence in diagnosing and managing mental health issues in healthcare professionals seeing this patient group may also have a negative impact on care.
There is growing evidence that mental and psychiatric disturbances start to appear even before the patient shows any motor symptoms and well before the diagnosis of Parkinson’s disease further highlighting the importance of developing knowledge and expertise in this area (Alamri 2015).
The Parkinson’s Excellence Network in the East Midlands (PENEM) has chosen improving access to mental health services for people with Parkinson’s disease as one of its priority areas (Parkinson’s UK). Physical health and mental health commissioning are often carried out separately with the majority of physical and mental health Trusts often being completely separate. Therefore services for mental health problems in Parkinson’s disease are usually separate to those for the physical aspects and if patients need to access mental health services they must be referred separately into mental health services which may lead to delays in accessing appropriate care and running the risk of fragmented care provision.
There are a number of challenges to joined up working across services including separate information technology systems which make communication between Parkinson’s disease services and mental health services difficult. There are also differences in length of ongoing follow up. Patients with Parkinson’s disease usually remain under regular follow up with the Parkinson’s disease team or neurologist for the lifetime of their illness but if seen by the mental health services there is an increasing trend toward short-term input and then discharge.
There is a lack of research evidence into whether patients with Parkinson’s disease might prefer to receive care for mental health aspects of their illness within a specialist Parkinson’s disease service. Little is known about mental health service provision for this patient group as consideration of care for the mental health aspects of Parkinson’s disease was notably absent in the 2015 UK Parkinson’s Audit which looked at the quality of care provided to people with Parkinson’s disease across the UK (Parkinson’s UK). Given that there is no specific mention of mental health input in the 2015 UK Parkinson’s Audit it could therefore be postulated that the majority of mental health service provision for people with Parkinson’s disease is located outside Parkinson’s disease services within specialist mental health services. Similarly the degree of expertise within mental health services in managing mental health difficulties in this patient population is unknown.
During my higher psychiatric training in Old Age Psychiatry I have provided psychiatric input to a local Parkinson’s disease service during my special interest time seeing many patients with mental health difficulties. My observations of the population that I saw was that many were not open to mental health services despite complex mental health needs and that there were high rates of undiagnosed anxiety and depression and cognitive issues within the Parkinson’s disease clinic. The Parkinson’s disease service I attended is a multidisciplinary clinic with geriatrician, specialist nurses, occupational therapists, physiotherapists, speech and language therapists and dietician input. There is however no commissioned specialist mental health professional input to the clinic and patients with mental health difficulties must be referred separately by their GP to mental health services.
What do we know about access to mental health services for patients with Parkinson’s disease from the literature?
A review of the available medical literature has revealed very little research evidence about access to mental health services for patients with Parkinson’s disease and even less research is available within the UK specifically.
In the All Party Parliamentary Group for Parkinson’s disease report Please mind the gap: Parkinson’s disease services today (2009) the issue of access to appropriate mental health services is raised. Reference is made to the NICE clinical guideline on Parkinson’s disease, published in June 2006 which places significant emphasis on the management of non-motor features of Parkinson’s disease including mental health problems. A number of themes emerge in the document relating to mental health. Very few people with Parkinson’s disease are receiving specialist mental health services and there is a lack of access to psychology input. Less than one in eight people with Parkinson’s disease have ever received an assessment or course of treatment in connection with their Parkinson’s disease from a mental health professional. Of course this does not take into consideration the likelihood of unrecognised or undiagnosed mental health issues.
On reviewing the research literature there is very little evidence examining the utilisation of mental health services by people with Parkinson’s disease.
The majority of mental health problems in Parkinson’s disease are not optimally managed (Dobkin 2013). An estimated 20% of people with Parkinson’s disease experiencing mental health complications are seen or receive professional care (Frisina 2008). Qureshi (2012) found that only 12.8% of a sample of veterans with Parkinson’s disease had reported any visits to a mental health facility. The traditional conceptualisation of Parkinson’s disease as a motor disorder has led to an increased emphasis on motor symptoms by treating professionals and individuals with Parkinson’s disease themselves (Frisina 2008). Psychiatric comorbidities are neither recognised nor treated to remission and neurologists failed to recognise depressive and anxious symptoms in people with Parkinson’s disease more than 50% of the time (Shulman 2002, Weintraub 2003).
There is also a general lack of awareness that an extensive range of non-motor symptoms also contribute to the clinical picture of Parkinson’s disease leading to underreporting of such symptoms (Shulman 2002). Chaudhuri (2009) state that up to 62% of non-motor complications are not declared to Parkinson’s disease neurologists as patients and carers alike are unaware that such symptoms are linked to Parkinson’s disease.
Troeung et al’s paper examines the patterns and predictors of mental health service utilisation in people with Parkinson’s disease. They look at factors contributing to willingness to seek mental health treatment and to identify any significant barriers and/or facilitators of treatment-seeking behaviour (Troeung 2015). Being female and of younger age were both associated with increased lifetime mental health service usage. Increasing age was the only significant barrier to seeking treatment which is also an issue in the general population.
None of these studies looked at barriers to making a mental health diagnosis or issues with access to mental health services. There is no clear data outlining local service provision for mental health issues in people with Parkinson’s disease as this information does not feature in the PD audit.
Survey of Parkinson’s disease nurses working in the East Midlands
As part of my role as mental health lead for the East Midlands Parkinson’s Excellence Network I undertook a survey of Parkinson’s disease nurses in the East Midlands to identify some of the key issues in accessing mental health services for patients with Parkinson’s disease.
All Parkinson’s disease nurse specialists who regularly attend the East Midlands Parkinson’s disease nurse network meetings were invited to participate in the survey as they were identified as a group of professionals in close contact with such patients and therefore likely to be aware of the main issues. Seventeen nurses were surveyed with 13 responses (response rate of 76.5%).
Respondents worked across the East Midlands in a variety of clinical settings including community settings, outpatient clinics and inpatient settings.
The key content of the survey is described in Box 1. Questions were asked using a Likert 10 point scale and further free text comments were also encouraged.
- How important do you think psychiatric symptoms in Parkinson’s disease are?
- How difficult do you perceive it to be for people with Parkinson’s disease and mental health issues to access mental health services?
- If you perceive there to be difficulties with Parkinson’s disease patients accessing mental health services do you have any specific comments you would like to make?
- Please comment on any ideas you have which might improve access to psychiatric services for patients with Parkinson’s disease.
- Please comment on any ideas you have about how communication between psychiatric and general services could be improved.
- How good do you feel communication is between psychiatric and general services (considering overall communication in both directions)?
- How confident are you that you are aware of what psychiatric services are available and how to access them?
- As a Parkinson’s disease professional how confident do you yourself feel in treating and managing common psychiatric issues within your own service without input from specialist Mental Health Services?
- How important do you think it is for psychiatric colleagues to have specialist knowledge and expertise in Parkinson’s disease?
- Have you had any direct experience of working jointly/closely with a psychiatric colleague? If yes please comment briefly on the circumstances of this.
- Does your Parkinson’s service currently have any direct input from Mental Health Professionals? If yes please can you describe this.
- How useful do you think direct psychiatric input into Parkinson’s services would be?
- How useful do you feel joint working with mental health professionals would be in certain complex cases?
- How useful would more training on the mental health issues associated with Parkinson’s disease be?
All respondents scored the importance of psychiatric symptoms in patients with Parkinson’s disease as either 9 or 10 (1=not important, 10=very important) indicating that those professionals working most closely with this patient population recognise the importance of these issues.
When asked how difficult do you perceive it to be for people with Parkinson’s disease and mental health issues to access mental health services (1=not at all difficult, 10=difficult all the time) the mean score was 7.54 indicating that Parkinson’s disease nurses do identify that there is an issue with access to mental health services for this population.
In relation to difficulty accessing mental health services several themes emerged:
- Lack of knowledge of who covers which geographical area and frustration regarding inconsistencies of approach between services
- Having to ask General Practitioners to refer to the Community Mental Health Team resulting in delay or in some cases no referral being made and delays in patients actually being seen by mental health services
- Perceived lack of experience in mental health services in managing patients with Parkinson’s disease
- Reports that mental health input had not been helpful or does not result in diagnosis or treatment or that input was only brief without ongoing follow up
- No access to neuropsychology services
- Lack of access to psychiatric assessment letters
The following suggestions were made to improve access to psychiatric services for patients with Parkinson’s disease:
- Direct input from a psychiatrist or specialist mental health nurse into the Parkinson’s clinic or a link person with a special interest and expertise within mental health services
- Joint clinics and assessments
- Being able to refer into mental health services directly rather than going through GP and better knowledge of structure of available mental health services
- Education of Parkinson’s disease professionals about mental health issues in Parkinson’s disease
- Building links with mental health professionals through teaching and discussing dilemmas with management
- Routine copying of letters in both directions
- Access to neuropsychology.
- Empowering patients to access mental health services
The following suggestions on improving communication were made:
- Routine sharing of clinic letters possibly via secure email with the patient’s consent.
- Shared records
- Improving formal and informal relationships between services
- Professionals meeting up to discuss cases
- Input from mental health professionals into the Parkinson’s disease clinic
- Psychiatric representation at Parkinson’s Excellence Network meetings.
When rating the communication between psychiatric and general services (in both directions) the average mean score was 4.5 (1=not very good at all, 10=very good) with a wide variance in scores suggesting some areas may be better at this than others.
Regarding knowledge of available psychiatric services and confidence in accessing them there was again a wide range of answers with a mean of 5.38 (1=not at all confident, 10=completely confident).
When asked “How confident as a Parkinson’s disease professional do you feel in treating and managing common psychiatric issues within your own service without input from specialist mental health services” the mean score was 4.77. (1=not at all confident, 10=completely confident) suggesting that input from specialist mental health services would be viewed as valuable.
In terms of how important it is for psychiatric colleagues to have specialist knowledge and expertise in Parkinson’s disease the mean score was 8.23 (1=not important, 10=very important).
Eight out of 13 respondents had experience of working closely with a psychiatric colleague. This involved mostly joint visits or close working with Community Mental Health Team members.
Five out of 13 respondents reported input into the Parkinson’s service from mental health professionals. The majority of this was through attendance of the patient at regular mental health services with actual direct input into the Parkinson’s clinic by mental health professionals being quite unusual.
When asked how useful direct psychiatric input to Parkinson’ services would be the mean score was 9.77 with no individual score below 8 indicating a strong perceived need for such input. (1=not at all useful, 10=very useful). Similarly joint working scored highly (1=not at all useful, 10=very useful) with a mean score of 9.92 and lowest individual score of 9.
On the issue of further training on mental health issues this was identified as very useful with a mean score of 9.77 and lowest individual score of 8 (1=not at all useful, 10=very useful).
Additional comments made included the perceived usefulness of carer support with advice around mental health issues particularly apathy and the possibility of accessing support groups for people with anxiety and depression in the context of Parkinson’s disease.
There is currently a drive for the provision of integrated care within the NHS across all services, including physical and mental health services. It is therefore disappointing that currently joined-up care provision is not occurring within Parkinson’s disease services. This is an area that requires further consideration to ensure that patients with Parkinson’s disease receive optimal treatment and input for their mental health difficulties. I would welcome suggestions and comments from professionals working in this field regarding how this issue could be further addressed.
- Alamri Y.A. Mental health and Parkinson’s disease: From cradle to the grave. British Journal of General Practice, May 2015, Vol 65/634(258-259)
- Chaudhuri KR, Schapira AHV. Non-motor symptoms of Parkinson’s disease: dopaminergic pathophysiology and treatment. LancetNeurol. 2009;8(5):464-474.
- Dobkin RD, Rubino JT, Friedman J, Allen LA, Gara MA, Menza M. Barriers to mental health care utilization in Parkinson’s disease. J GeriatrPsychiatryNeurol. 2013;26(2):105-116.
- Frisina PG, Borod JC, Foldi NS, Tenenbaum HR. Depression in Parkinson’s disease: health risks, etiology, and treatment options. Neuropsychiatr DisTreat. 2008;4(1):81-91.
- National Institute for Health and Clinical Excellence, NICE clinical guideline 35 – Parkinson’s disease: diagnosis and management in primary and secondary care (2006)
- Parkinson’s UK. UK Parkinson’s Excellence Network, Accessed Nov 2016
- Parkinson’s UK. 2015 UK Parkinson’s Audit Summary Report, 2015.
- Please mind the gap – Parkinson’s disease services today. All Party Parliamentary Group for Parkinson’s Disease. 2009
- Qureshi SU, Ampsoker AB, Calleo JS, Kunik ME, Marsh L. Anxiety disorders, physical illnesses, and health care utilization in older male veterans with Parkinson’s disease and comorbid depression. J GerPsychiatNeurol. 2012;25(4):233-239
- Shulman LM, Taback RL, Rabinstein AA, Weiner WJ. Non-recognition of depression and other non-motor symptoms in Parkinson’s disease. ParkinsonismRelatDisord. 2002;8(3): 193-197.
- Troeung L, Gasson N, Egan SJ. Patterns and Predictors of Mental health Service Utilization in People with Parkinson’s Disease. Journal of Geriatric Psychiatry and Neurology, 2015, Vol 28(1) 12-18.
- Weintraub D, Moberg PJ, Duda JE, et al. Recognition and treatment of depression in Parkinson’s disease. J Geriatr Psychiatry Neurol. 2003; 16:178-183.
Dr Christine Helen Taylor, Consultant in Old Age Psychiatry
Correspondence address: firstname.lastname@example.org