CENTRE FOR PHARMACY POSTGRADUATE EDUCATION. Parkinson s disease. Book2. A CPPE focal point programme

Transcription

1 CENTRE FOR PHARMACY POSTGRADUATE EDUCATION Parkinson s disease A CPPE focal point programme Book2 FP126/2 September 2015

2 Parkinson s disease Book 2 Content contributors Caroline Barraclough, regional manager, CPPE Kirsty Brisker, senior neurosciences specialist pharmacist, North Bristol NHS Trust Jaswinder lai Dhap, pharmacist, Worcester Health and Care NHS Trust and CPPE tutor Simon Harris, community pharmacist and CPPE tutor Karen Kite, lead pharmacist medicine, South Warwickshire NHS Foundation Trust Jeremy Robson, lead pharmacist neurology and stroke, The Leeds Teaching Hospitals NHS Trust Rachel Rose, community pharmacist and CPPE tutor Matthew Sullivan, patient Suma Surendranath, professional engagement programme manager, Parkinson s UK Natasha Ubhoo, community pharmacist Alison Waldron, acute clinical nurse specialist Parkinson s disease, The Dudley Group NHS Foundation Trust CPPE programme developer Liz Reid, senior pharmacist, learning development, CPPE Reviewers Janine Barnes, neurology specialist pharmacist, Dudley Clinical Commissioning Group Paul Hughes, practice pharmacist, St. Austell Healthcare Shelley Jones, clinical pharmacy team leader, neurosciences, King s College Hospital NHS Foundation Trust CPPE reviewers Ceinwen Mannall, lead pharmacist, learning development Michelle Styles, regional manager Piloted by Catherine McClelland, tutor, CPPE Disclaimer We have developed this learning programme to support your practice in this topic area. We recommend that you use it in combination with other established reference sources. If you are using it significantly after the date of initial publication, then you should refer to current published evidence. CPPE does not accept responsibility for any errors or omissions. External websites CPPE is not responsible for the content of any non-cppe websites mentioned in this programme or for the accuracy of any information to be found there. All web links were accessed on 13 August Brand names and trademarks CPPE acknowledges the following brand names and registered trademarks mentioned throughout this programme: Azilect, Duodopa, Eldepryl, Gaviscon, Madopar, Mirapexin, Neupro, Requip, Sastravi, Sinemet, Stanek, Stavelo, Symmetrel, Zelapar. Published in September 2015 by the Centre for Pharmacy Postgraduate Education, Manchester Pharmacy School, The University of Manchester, Oxford Road, Manchester, M13 9PT. Production Design & artwork by Gemini West Ltd Printed by Gemini Print Ltd Printed on FSC certified paper stocks using vegetable based inks. Copyright Controller HMSO

3 Contents Learning with CPPE 4 About your focal point event 5 Case studies 6 Clinical vignettes 11 Directing change 14 Putting your learning into practice 16 Suggested answers 20 References 46 Parkinson s disease Book 2 2 3

4 Parkinson s disease Book 2 Learning with CPPE The Centre for Pharmacy Postgraduate Education (CPPE) offers a wide range of learning opportunities in a variety of formats for pharmacy professionals from all sectors of practice. We are funded by Health Education England to offer continuing professional development for all pharmacists and pharmacy technicians providing NHS services in England. For further information about our learning portfolio, visit: We recognise that people have different levels of knowledge and not every CPPE programme is suitable for every pharmacist or pharmacy technician. We have created three categories of learning to cater for these differing needs: 1 Core learning (limited expectation of prior knowledge) 2 3 Application of knowledge (assumes prior learning) Supporting specialties (CPPE may not be the provider and will direct you to other appropriate learning providers). This is a 2 learning programme and assumes that you already have some knowledge of the topic area. Continuing professional development - You can use this workshop programme to support your continuing professional development (CPD). Consider what your learning needs are in this area. You can record your CPD online by visiting: or use the CPD record sheets to plan and record the actions you have taken. Programme guardians - CPPE has a quality assurance process called programme guardians. A programme guardian is a recognised expert in an area relevant to the content of a learning programme who reviews the programme every six to eight months. Following the regular programme guardian review we develop an update to inform you of any necessary corrections, additions, deletions or further supporting materials. We recommend that you check you have the most recent update if you are using a programme more than six months after its initial publication date. Feedback - We hope you find this learning programme useful for your practice. Please help us to assess its value and effectiveness by visiting the My CPPE page on our website: Alternatively, please us at: feedback@cppe.ac.uk 4

5 About your focal point event Before coming along to this event you will have already completed Book 1 to help you identify your own learning needs, read the key information and then related it to your own area of practice and professional development. At this event you will work through the case studies and clinical vignettes in this book with your professional colleagues. This will help you apply what you have learnt so far and encourages you to measure the changes in your practice. We also include some suggested answers to the learning activities. You will have the opportunity to discuss your approach to the Directing change exercise from Book 1. You may be attending a CPPE tutor-led event or have arranged to meet with your own CPPE learning community. Just to remind you, in this programme we consider: n the effects of motor and non-motor Parkinson s symptoms on patients n treatment options available for people with Parkinson s, potential sideeffects and interactions with these medicines n supporting people with Parkinson s to get the best from their medicines n signposting people living with Parkinson s and their carers to useful sources of advice. This is to certify that the CPPE focal point event on Parkinson s disease on Location CPPE pharmacy tutor signature CPPE tutor name attended Parkinson s disease Book 2 2 5

6 Parkinson s disease Book 2 Case study Derek Walton Time to prepare: 15 minutes to review and answer the questions individually or in small groups. Time to discuss: 15 minutes to discuss the answers with your colleagues. Derek is a 68-year-old regular patient who was diagnosed with Parkinson s five years ago. His medicines are dispensed in weekly multi-compartment compliance aids (MCAs) which he collects every month, and his current prescription is as follows: Medicine Co-careldopa 25/100 mg Co-careldopa 25/100 mg modified release Citalopram 20 mg Lactulose Dose One tablet three times daily (8:00am, 1:00pm and 6:00pm) One tablet at night (10:00pm) One tablet daily 10 ml twice daily He comes into the pharmacy and asks if he can have a word with you. He tells you that he is going into hospital in two weeks time for an elective hip replacement operation. He has just been to the pre-op assessment clinic and is worried because he has been told that the nurses cannot use his own medicines from a compliance aid and that he may not be able to self-administer his medicines while in hospital. 1. What advice and support would you offer Derek in preparation for his hospital stay? Focus on patient-centred care 6 Following your intervention, the GP supplies a seven-day prescription to cover Derek s time in hospital. He has his hip replacement surgery and is discharged five days later. You have just made up his month s supply of MCAs when his carer comes into the pharmacy to collect it. She shows you a copy of his discharge letter, and says they are confused about the additional medicines he has been discharged with. He has been given more laxatives as

7 well as tablets for pain and nausea following his operation. She also asks if the Parkinson s medicines have been changed as his tablets were cream and now they are brown. 2. How would you deal with this enquiry? Focus on clinical knowledge Derek makes a full recovery from his operation. Six months later he comes to see you again following his regular neurology clinic appointment. He has been started on a new tablet called ropinirole and he feels very sick. He remembers the nurse telling him something about feeling sick but he didn t realise that it would be this bad. 3. What pharmacological and non-pharmacological advice would you offer Derek? Focus on therapeutics 4. What other potential side-effects of ropinirole would you consider discussing with Derek? Focus on clinical knowledge Parkinson s disease Book 2 2 7

8 Parkinson s disease Book 2 Case study Connie James Connie is a 72-year-old who comes into your pharmacy on a Tuesday morning after a bank holiday weekend. She was diagnosed with Parkinson s eight years ago and is a regular customer. You notice as she walks in that she has a shuffling gait, appears anxious and talks hesitantly and quietly. She tells you that she fell in her hallway last night. 1. What questions would you ask Connie? Focus on communication and consultation skills She tells you she has run out of her Madopar and Sinemet preparations and hasn t taken any since yesterday afternoon. You check her patient medication record (PMR) and see that her regular medicines are as follows: 8 Medicine Co-careldopa 25/100 mg Madopar 12.5/50 mg dispersible Co-careldopa 25/100 mg modified release Rotigotine patch 4 mg/24 hours Escitalopram 20 mg Gaviscon liquid Dose One tablet four times daily One tablet in the morning One tablet at night Apply one patch daily One tablet daily 5-10 ml four times daily

9 2. What are your priorities for Connie? Focus on patient-centred care You phone Connie s GP and explain the situation. The GP confirms that he would like you to supply the medicines and a prescription will follow by lunchtime. 3. What action would you take if you didn t have one of the medicines in stock? Focus on therapeutics You give Connie a glass of water to take her dispersible Madopar. While waiting for the medicine to work you overhear her asking the medicines counter assistant to recommend a laxative. Continued on next page Parkinson s disease Book 2 2 9

10 Parkinson s disease Book 2 4. List the non-motor symptoms of Parkinson s that Connie might be experiencing. Focus on clinical knowledge 5. What advice would you offer her to help her manage these symptoms? Focus on therapeutics 6. Do you know what services you could refer or signpost Connie to for additional help? Focus on patient-centred care 10

11 Clinical vignettes Time to prepare: 15 minutes to review and answer the questions individually or in small groups. Time to discuss: 15 minutes to discuss the answers with your colleagues. In this section of focal point we look at brief clinical scenarios and particularly focus on decision-making, communication and taking a patient-centred approach. Review each of the clinical vignettes and come up with a suitable response to manage the situation. You may wish to practise these responses using role play. Clinical vignette 1 You hand Karen Taylor s first prescription for co-careldopa tablets to her. You are about to discuss her new medicine with her but she bursts into tears, explaining that she is only 32 years old and thought Parkinson s was something that only affects older people. She says she wants to know all about the condition. How would you respond to Karen? Clinical vignette 2 Milan Kostic is getting ready to go on holiday and has come to buy some medicines to take with him. The medicines counter assistant calls you over and says Milan would like some co-codamol and something for hayfever and travel sickness, but that he also takes medicines for Parkinson s. How would you respond to Milan? Parkinson s disease Book

12 Parkinson s disease Book 2 Clinical vignette 3 Zara Ahmed comes to talk to you about her husband. He was diagnosed with Parkinson s three years ago. Recently she has noticed that he spends a lot of time on the computer and lots of parcels are arriving from various shops. He has become secretive and she is wondering if this can be related to his Parkinson s. How would you respond to Zara? Clinical vignette 4 Hong Lee has had Parkinson s for two years and presents with a prescription for two new medicines. His medicines regimen is now as follows: Medicine Co-beneldopa dispersible 62.5 mg Stavelo 100/25/200 mg Co-careldopa 50/200 mg modified release Amlodipine 5 mg Aspirin 75 mg Atorvastatin 20 mg Dose One tablet on rising (new) One tablet four times daily (new) One tablet at night One tablet in the morning One tablet in the morning One tablet at night He asks for your advice on what to do if he misses a dose as he is worried that he now has too many tablets to remember and he is still working full time. How would you respond to Hong? 12

13 Visit the Consultation skills for pharmacy practice website to develop your consultation skills and learn more about taking a patient-centred approach. Parkinson s disease Book

14 Parkinson s disease Book 2 Directing change Time to prepare: none you should have done this before the event. Time to discuss: 15 minutes to discuss the answers with your colleagues. Revisit the notes you made in the Directing change section of Book 1. Discuss the solutions and ideas you developed with your colleagues. What would you do differently now as a result of your learning? You have reached the end of the activities for this focal point event; the remainder of this book contains follow-up activities and the suggested answers. You may wish to spend some time after the event looking through these with colleagues. 14

15 After your focal point event: putting your learning into practice Now it is time to assess your learning, determine your readiness to change and put your new knowledge into practice. Parkinson s disease Book

16 Parkinson s disease Book 2 Putting your learning into practice There are four actions you should undertake to ensure that what you have learnt in this focal point programme influences your future practice. 1. Work through the practice activities listed below 2. Evaluate your learning by revisiting the Moving into focus questions 3. Complete the CPPE online e-assessment 4. Reflect on the steps for change outlined on page Practice activities (45 minutes) You might wish to start to put some of your learning into practice by undertaking the following activities. Identify two Parkinson s patients from your pharmacy PMR system or GP prescribing system who might benefit from a review of their medicines. Contact them to invite them for a medicines use review (MUR) or medication review. Visit the Parkinson s UK website ( and decide with your pharmacy team which resources will be helpful for your patients and their families. Obtain these resources and display them in your pharmacy or practice. Find out when the next Parkinson s Awareness Week is and start to make plans to get your pharmacy or practice involved. Follow Parkinson s UK on Facebook and Twitter to make sure you keep up to date with any campaigns. When will you complete these activities? 16

17 2. Evaluate your learning (15 minutes) The second step is to revisit the Moving into focus questions. 1. Describe the changes in the brain associated with the symptoms of Parkinson s. How is it diagnosed? 2. List five non-motor symptoms of Parkinson s. 3. Which alternative formulation options are available when people with Parkinson s are unable to swallow oral tablets or capsules? Continued on next page Parkinson s disease Book

18 Parkinson s disease Book 2 4. Jim Smith is a regular patient in your pharmacy and you routinely dispense his Parkinson s medicines. He tells you his consultant has just started him on apomorphine and asks if he could chat with you about this new medicine. How would you find out what information Jim needs about this medicine? 5. Do you know the multidisciplinary team members who look after Parkinson s patients in your local hospital trust? Are there any community outreach staff for Parkinson s in your area? Can you answer these now? 3. Access assessment (30 minutes) The next step in assessing your learning is to access the online e-assessment on our website. To access the assessment, go to: If you complete the e-assessment successfully you will be able to print your own certificate of achievement. When will you access the e-assessment? 18

19 4. Reflection steps for change (15 minutes) The final step is to think about the following statements and note down how you feel about them. This should help you determine any requirements for your further development. I have achieved my personal learning objectives that I set myself on page 14 in Book 1. Strongly disagree Disagree Agree Strongly agree I have identified additional learning I need to undertake to improve my knowledge of the therapeutic management of Parkinson s disease. Strongly disagree Disagree Agree Strongly agree I would like to follow up a best practice idea expressed by a colleague at the focal point event/within my learning community. Strongly disagree Disagree Agree Strongly agree I would like to find out what resources and specialist support are available in my locality to help me support patients and carers living with Parkinson s. Strongly disagree Disagree Agree Strongly agree After reflecting on these statements, what steps will you take now to make them reality? Parkinson s disease Book

20 Parkinson s disease Book 2 Suggested answers to: n Moving into focus questions n Practice points n Talking points n Case studies n Clinical vignettes Please remember that these answers are suggestions only. You should refer to local guidelines when monitoring patients Parkinson s therapy. 20

21 These are the authors suggested responses to the learning activities and they should be used as a guide during your focal point event. Where possible, use your own local guidelines and policies to inform the discussion and answers. We have provided short answers to the questions, case studies and clinical vignettes and, where appropriate, these are followed by discussion points that provide a little more detail. Moving into focus 1. Describe the changes in the brain associated with the symptoms of Parkinson s. How is it diagnosed? Parkinson s is characterised by the degeneration of the dopamine-producing cells in the substantia nigra. The overall effect of dopamine depletion leads to the main motor symptoms seen in Parkinson s. Diagnosis is usually based on a history and examination. Discussion points n Parkinson s is a progressive neurodegenerative disease. n The symptoms of Parkinson s result from loss of dopaminergic neurons in the substantia nigra which innervate the striatum. n Dopamine and acetylcholine are the neurotransmitters involved in controlling normal voluntary movement. n The diagnostic process differs from patient to patient. n A consultant will take a full history and conduct a neurological examination in clinic. n Blood tests are usually taken to eliminate other causes of the presenting symptoms, eg, thyroid function tests, ceruloplasmin (to rule out Wilson s disease). n Further investigations may be requested, but not in all cases. n More information on the diagnosis of Parkinson s can be found in Section 1.3 of the learning in Book 1. Parkinson s disease Book

22 Parkinson s disease Book 2 2. List five non-motor symptoms of Parkinson s. Common non-motor Parkinson s symptoms include: n anxiety, depression n autonomic problems, eg, bladder dysfunction caused by detrusor muscle hyperactivity, postural hypotension n constipation, delayed gastric emptying n sleep disturbances, hallucinations, vivid dreams n changes in speech. Discussion points n Other non-motor symptoms include: n impulsive and compulsive behaviour n excessive daytime sleepiness n pain. n Non-motor symptoms often cause patients more distress than the motor symptoms of Parkinson s. n The addition of medicines to treat these non-motor symptoms can make a patient s regimen even more complex and lead to polypharmacy issues. Care is required to avoid interactions and side-effects. n A non-motor symptoms questionnaire is available from Parkinson s UK ( The questionnaire is for patients to complete to help health professionals assess their non-motor Parkinson s symptoms. n Other useful resources from Parkinson s UK include booklets on looking after your bladder and bowels when you have Parkinson s (www. parkinsons.org.uk/content/looking-after-your-bladder-andbowels-when-you-have-parkinsons-booklet) and sleep and night-time problems with Parkinson s ( 3. Which alternative formulation options are available when people with Parkinson s are unable to swallow oral tablets or capsules? 22 Patients should be considered on an individual basis, taking into account their Parkinson s symptoms and co-morbidities. Specialist advice should be sought if possible, for example, from a specialist pharmacist, Parkinson s disease nurse specialist (PDNS) or consultant. Any changes to Parkinson s medicines should be monitored carefully and regularly reviewed.

23 Discussion points n Patients on co-beneldopa capsules can be changed to dispersible tablets. As there is no dispersible co-careldopa formulation, switching to co-beneldopa dispersible tablets in equivalent levodopa doses is an option. n Consult reference books, eg, current NEWT guidelines (available at: and/or your local hospital medicines information department. n For patients on oral dopamine agonists (ropinirole, pramipexole) it may be possible to swap to an equivalent dose of a rotigotine patch. n Modified-release preparations need to be swallowed whole. Modifiedrelease ropinirole and modified-release pramipexole could be changed to an equivalent immediate-release dose, eg, ropinirole 6 mg modified release once daily could be changed to ropinirole 2 mg three times daily. These immediate-release tablets may be crushed and mixed with water for oral administration (unlicensed usage). n Apomorphine may be used under specialist supervision for selected patients who are unable to swallow tablets or capsules. 4. Jim Smith is a regular patient in your pharmacy and you routinely dispense his Parkinson s medicines. He tells you his consultant has just started him on apomorphine and asks if he could chat with you about this new medicine. How would you find out what information Jim needs about this medicine? Ask Jim open questions to make sure you discover what he wants to get out of his chat with you. Examples might be: Tell me how you are getting on with the apomorphine so far, or Do you have any concerns about it? Once you have answered his questions you can bring any other important points that haven t been covered into the discussion. Discussion points n Apomorphine is an extremely potent dopamine agonist that can only be given as a subcutaneous injection or infusion; it is usually used only in advanced disease under specialist supervision. n Apomorphine is a potent emetic and patients must be prescribed a suitable antiemetic, such as domperidone, prior to starting treatment. Continued on next page Parkinson s disease Book

24 Parkinson s disease Book 2 n Once treatment has been established it may be possible to gradually reduce other antiparkinsonian medicines and reduce or withdraw the antiemetic. n Once initiated by a hospital specialist, apomorphine prescribing is usually undertaken by primary care under shared care arrangements. Community pharmacy teams must ensure continuation of supply of the correct form of apomorphine injection. Some hospitals supply via homecare companies. Check with the patient where they are getting their supply from. n Discuss potential adverse effects with the patient. n Patients should also be informed that increased wriggling (dyskinesia) could be a sign of overtreatment and they should seek advice from their specialist team. n Drowsiness and sudden onset of sleep may occur while titrating the dose and patients should be warned of the risk and advised not to drive or operate machinery. n Patients should be advised to seek further advice from their specialist team if needed. Check that they have contact numbers for the PDNS, Parkinson s consultant and specialist pharmacist. n Make a note on the patient s PMR that apomorphine is being used if you are not being asked to supply it yet. n The Parkinson s UK information sheet on apomorphine is a useful source of further information. It can be accessed at: content/apomorphine-information-sheet 5. Do you know the multidisciplinary team members who look after Parkinson s patients in your local hospital trust? Are there any community outreach staff for Parkinson s in your area? Make sure this list of contacts is available in your workplace and kept up to date. Gathering the information for your list may be used as an opportunity to: n understand the roles of others in the multidisciplinary team n integrate community and primary care pharmacy teams into local networks. 24

25 Practice and talking points Talking point A What happens when a patient misses their Parkinson s medicines or doesn t get them on time? Patients may experience deterioration in the control of their Parkinson s symptoms. An increase in motor symptoms, such as tremor, rigidity, akinesia and postural instability, may lead to falls or dysphasia. Aspiration is also a risk with the potential to lead to pneumonia. In extreme cases (or after several doses have been missed) patients may experience the potentially fatal neuroleptic malignant syndrome, caused by rapid withdrawal of dopamine stimulation, or painful dystonia (prolonged spasms of muscle contraction), which can lead to permanent loss of mobility (due to damage to ligaments). Non-motor symptoms can also be a problem with missed or delayed doses, especially anxiety, depression, fatigue and pain. Discussion points n The Parkinson s UK Get it on time campaign raises awareness of how vital it is that people with Parkinson s receive their medicines on time. You can find out more about the campaign at: n This ten minute video, aimed at care home staff, explains the importance of people with Parkinson s getting their medicines on time: org.uk/professionals/resources/get-it-time-medicine-managementresidents-parkinsons-film n Loss of control of symptoms can also put patients at increased risk of aspiration and infections. Practice point 1 A patient is prescribed pramipexole 625 micrograms three times daily. What should be dispensed? The correct dose would be made up of pramipexole dihydrochloride monohydrate (salt) 500 micrograms tablets and pramipexole dihydrochloride monohydrate (salt) 125 micrograms tablets. This can be a source of confusion for prescribers and pharmacists as doses and strengths in the British National Formulary (BNF) are stated in terms of pramipexole base. Parkinson s disease Book

26 Parkinson s disease Book 2 Discussion points n Pramipexole (immediate release) is available in 88, 180, 350 and 700 micrograms (base) strength tablets. Equivalent strengths are also stated in the BNF in terms of pramipexole dihydrochloride monohydrate (salt). n 88 micrograms (base) is equivalent to 125 micrograms (salt). n 350 micrograms (base) is equivalent to 500 micrograms (salt). n Pramipexole is also available as a modified-release preparation in 260 micrograms, 520 micrograms, 1.05 mg, 1.57 mg, 2.1 mg, 2.62 mg and 3.15 mg strength tablets (strength stated as base). n Care must be taken to ensure the correct preparation is dispensed. Practice point 2 List five key issues you would consider when planning an MUR or a medication review with a patient with Parkinson s? Considerations would include those relating to the practical and environmental aspects of carrying out the review as well as anticipating the questions that the patient might want to ask during the consultation. Discussion points n Practical considerations n Parkinson s can lead to difficulties in communication, such as quietening of the voice, slurring of speech and reduced facial expressions and body language. It is important to allow sufficient time to conduct a consultation so that the patient doesn t feel rushed. Try to ensure the review is carried out somewhere quiet and minimise background noise if possible. n Does the patient have problems with mobility that make it difficult for them to get to the pharmacy or practice? If so, consider if a telephone review would be possible or if there are any domiciliary medication review services in your area that the patient could access. n Would the patient like a carer/relative present? n Given the potential for problems with polypharmacy, would the patient be able to bring all their medicines with them? 26 n Try to arrange the time of the review to match the time of day the patient is usually functioning best.

27 n Planning questions n Tell me about your Parkinson s. Find out how long they have been diagnosed. n When was their last appointment with their specialist (consultant or PDNS)? When is the next appointment? Do they have contact details for them? n Tell me about your symptoms. Explain what happens when you take your medicines. Tell me which medicines affect which symptoms. Find out how well their motor and non-motor Parkinson s symptoms are controlled. n Describe how you take your medicines on a typical day. What would help you to remember to take your medicines? Are they having any problems in remembering doses of medicines or fitting the regimen around work/other commitments? Do they need any support with adherence? This does not necessarily mean an MCA. Consider other forms of support, such as reminder charts, plain bottle tops, blister pack poppers. n Have there been any recent changes to your regimen and if so, do you have any concerns? n Are you having any swallowing difficulties? n Have you noticed any side-effects from your medicines? Ask specifically about impulsive and compulsive behaviour. n Apart from medicines-related issues, other common reasons for Parkinson s patients to be admitted to hospital include urinary tract infections (UTI) and constipation. The review provides an opportunity to remind patients to seek advice if they experience UTI symptoms or constipation. n Do you have any questions or support needs? Be ready to signpost patients to other sources of help. The Parkinson s UK booklet Key information for community pharmacists includes more information and suggestions for MURs. It can be found at: Parkinson s disease Book

28 Parkinson s disease Book 2 Talking point B What are the similarities and differences between the way in which you would communicate with someone newly diagnosed with Parkinson s compared with someone who was diagnosed 5-10 years ago? Every person with Parkinson s is an individual. Consider what advice they want now. What advice have they been given previously? Discussion points n Ask them when they were diagnosed. n A person who has been diagnosed for 5-10 years will have greater experience of the condition and will have had time to adjust to the diagnosis. They are likely to have a good idea of how they respond to medicines and how they can manage their medicines. However, don t assume that they know everything. n A person who is newly diagnosed will probably be scared and upset, particularly about what the future holds. They may need more information on the importance of timings of doses and may need signposting to resources and support. n Ask open questions and be guided by the patient s responses and needs, not your own need to impart your excellent knowledge of Parkinson s! n Make sure the patient feels able to ask questions and knows they can come back to you at any time. Practice point 3 One of your patients with Parkinson s is planning a long-haul business trip. He asks for some advice about managing his medicines and if you have any other tips on making his journey easier. What options would you discuss with him? In instances of long-haul travel where different time zones are crossed it can be difficult to manage a complex medicines regimen. Patients should be advised to check with their specialist PDNS, specialist pharmacist or consultant for specific guidance, but in general doses should continue to be taken at the usual intervals and patients should understand how to safely use rescue doses of immediate-release levodopa, should this be required. 28

29 Discussion points Other tips you can provide n Wear two watches to keep track of the time zone at home and in your new location. n If food is important at the time of doses, eg, if you suffer with nausea when taking doses, you could take small snacks with you to cover the period of travel. n Pack medicines in two different pieces of luggage in case one goes astray. This may mean ordering additional prescription medicines from the GP/ specialist in advance of the trip. n Take a complete list of all your medicines. n Book an aisle seat if possible to allow freedom of movement and easy access to toilet facilities. n Ensure you have appropriate travel insurance. n Tools such as MedicAlert bracelets and Parkinson s UK medication cards can be carried to highlight your condition and its management. n Have a look at the Parkinson s UK leaflet International travel and Parkinson s available at: Practice point 4 What local and national self-help groups and resources are available for people (patients, family members and carers) living with Parkinson s? Links to support and resources for patients can be found in the Useful resources section in Book 1. Patients should be advised to take care with internet or app searches and to use trusted sources of information such as those described in this programme. Discussion points n Find out how to access local specialist multidisciplinary teams, eg, physiotherapists, occupational therapists, consultants, PDNSs, specialist pharmacists, speech and language therapists. n Do you have contact details or referral pathways to support patients with smoking cessation, weight management, exercise, alcohol problems (if necessary)? n Read the DVLA s advice on driving with Parkinson s so you can provide advice and signpost patients and carers to this information. Continued on next page Parkinson s disease Book

30 Parkinson s disease Book 2 n In addition to the links in the Useful resources section in Book 1, the following resources may be helpful. National organisations and general advice Parkinson s UK website The Parkinson s UK website has information about local support teams and groups at: People living with Parkinson s can also call their free helpline on NHS Choices The Health A-Z conditions and treatments web page can be used to locate local Parkinson s support services by postcode. Age UK Search for Parkinson s disease for general information and wider support specifically for older people. Research Institute for Consumer Affairs This is an independent research charity dedicated to providing free, practical and unbiased information of value to older and disabled people. It has a range of reports on products and services, including Getting in and out of a car and Choosing cookers, ovens, hobs and microwaves. Finance United Kingdom Government website The gov.uk website provides information on caring for someone, money, tax and benefits, travel and transport. Specific information on the disability living allowance and carers/attendance allowances available can be found at: 30

31 Young patients American Parkinson Disease Association National Young Onset Center This website offers particular support for young people with Parkinson s. Emotional support for patients and carers Parkinson s UK Carers of people with Parkinson s can find advice on the Our peer support service section of the Parkinson s UK website. Partners in Parkinson s This website was created by the Michael J Fox Foundation for Parkinson s Research and AbbVie, and offers helpful advice for patients, including tips on their relationships and communication. Parkinson s disease Book

32 Parkinson s disease Book 2 Case study Derek Walton Derek is a 68-year-old regular patient who was diagnosed with Parkinson s five years ago. His medicines are dispensed in weekly multi-compartment compliance aids (MCAs) which he collects every month, and his current prescription is as follows: Medicine Co-careldopa 25/100 mg Co-careldopa 25/100 mg modified release Citalopram 20 mg Lactulose Dose One tablet three times daily (8:00am, 1:00pm and 6:00pm) One tablet at night (10:00pm) One tablet daily 10 ml twice daily He comes into the pharmacy and asks if he can have a word with you. He tells you that he is going into hospital in two weeks time for an elective hip replacement operation. He has just been to the pre-op assessment clinic and is worried because he has been told that the nurses cannot use his own medicines from a compliance aid and that he may not be able to self-administer his medicines while in hospital. 1. What advice and support would you offer Derek in preparation for his hospital stay? Focus on patient-centred care Reassure Derek that as this is a planned admission there are steps you can support him with to reduce any problems with his medicines when he is in hospital. Encourage him to ask about the hospital s self-administration policy which requires an assessment of a person s capacity to self-administer. Discussion points n Make sure Derek has an up-to-date list of all his medicines with clear information about the preparation, dose and timing. Parkinson s UK produces a medication card that can be kept in a wallet or purse (available from: 32

33 n Advise Derek that Parkinson s UK produces a Get it on time washbag that contains resources to help prepare for an admission. This is available from: n Arrange to supply his medicines in bottles or boxes. Medicines that have already been taken out of their original packaging (eg, dispensed in a compliance aid) will generally not be accepted by hospitals. n Ask Derek if he needs any more information about his medicines to help him self-administer. Does he need any other compliance support such as plain tops on bottles or a medicines reminder chart? Even if Derek is unable to self-administer in hospital, taking in his own medicines for use under a patient s own drugs (PODs) scheme will reduce any delays in getting medicines to the ward from the hospital pharmacy. n Advise him to contact (or offer to contact) his PDNS to discuss his admission. They may be able to visit him at the hospital and/or link with clinical colleagues. n Reassure him that plans can be made for any time he has to be nil by mouth. Following your intervention, the GP supplies a seven-day prescription to cover Derek s time in hospital. He has his hip replacement surgery and is discharged five days later. You have just made up his month s supply of MCAs when his carer comes into the pharmacy to collect it. She shows you a copy of his discharge letter, and says they are confused about the additional medicines he has been discharged with. He has been given more laxatives as well as tablets for pain and nausea following his operation. She also asks if the Parkinson s medicines have been changed as his tablets were cream and now they are brown. 2. How would you deal with this enquiry? Focus on clinical knowledge Check the discharge letter and compare it with your pharmacy PMR. Assess whether any changes have been made and if so, are there any reasons for changes stated on the discharge letter. Continued on next page Parkinson s disease Book

34 Parkinson s disease Book 2 Discussion points n If no changes have been made to Derek s Parkinson s medicines, check the Parkinson s UK Drug treatments for Parkinson s guide or poster (available at: It may be possible to identify whether a different brand has been dispensed. If so, reassure Derek s carer that this will not usually cause a problem but to monitor his symptom control and contact the GP if there is any worsening. There is no national guidance on switching between brands of Parkinson s medicines but some specialist teams do have a policy of using brand-specific medicines. Parkinson s UK recommends that medicines should not be switched between brands and generic versions unless absolutely necessary. n Check the discharge letter for any instructions regarding the new laxatives and check with the GP if necessary. Are they in addition to or instead of his lactulose? They may have been added while Derek was in hospital due to immobility, change of food, etc, but will they still be required now that he is home? Is he suffering from constipation now? n Which antiemetic has been prescribed? Metoclopramide and prochlorperazine can worsen Parkinson s symptoms. Domperidone is the antiemetic of choice as although it is a dopamine antagonist it does not cross the blood-brain barrier. Cyclizine may also be considered if domperidone is not suitable. Is an antiemetic still required? n Which analgesics have been prescribed? Opioid analgesics may cause drowsiness and increase the risk of falls. Are the analgesics still required or can they be reduced or stopped? Derek makes a full recovery from his operation. Six months later he comes to see you again following his regular neurology clinic appointment. He has been started on a new tablet called ropinirole and he feels very sick. He remembers the nurse telling him something about feeling sick but he didn t realise that it would be this bad. 34

35 3. What pharmacological and non-pharmacological advice would you offer Derek? Focus on therapeutics Discussion points Nausea and vomiting are common side-effects of dopamine agonists such as ropinirole, particularly when they are first initiated. Check that Derek is taking his ropinirole with food as this should help to reduce nausea. Reassure him that his nausea can be managed with the help of other medicines if necessary and that it is worse when ropinirole is first started and should improve with time. Advise him not to stop the ropinirole suddenly and offer to contact his specialist team or GP. n Ask Derek if he was given any other advice at the clinic when his new medicine was started. Was he given any other tablets to prevent nausea? n Domperidone would be the antiemetic of choice. Recent advice from the Medicines and Healthcare products Regulatory Agency (MHRA) has restricted the licensed dose, duration and indications for domperidone and introduced new contraindications. Cyclizine or a 5-HT 3 antagonist such as ondansetron would be alternative antiemetic options if domperidone were unsuitable. Specialist teams may differ in their approach to first-line antiemetic choice in response to the MHRA guidance on domperidone. You can read the guidance at: domperidone-risks-of-cardiac-side-effects n Dopamine agonists must not be stopped suddenly, so contact the specialist team for advice and communicate with Derek s GP if necessary. Parkinson s disease Book 2 2 Continued on next page 35

36 Parkinson s disease Book 2 4. What other potential side-effects of ropinirole would you consider discussing with Derek? Focus on clinical knowledge Some people taking dopamine agonists (and less commonly levodopa) experience problems with impulsive and compulsive behaviour. Sudden onset of sleep can occur with dopamine agonists and patients starting these medicines should be warned of the risk and the need to exercise caution when driving or operating machinery. Hypotensive reactions may also present a risk when driving, particularly during the first few days of treatment. Discussion points 36 n Common adverse effects of dopamine agonists are: n nausea, vomiting, loss of appetite n postural hypotension n confusion, hallucinations n drowsiness, including sudden onset of sleep n dyskinesia (may indicate overtreatment). n Less common adverse reactions of dopamine agonists are: n psychosis n impulsive and compulsive behaviour. n Examples of impulsive and compulsive behaviour include gambling, binge eating and hypersexuality. These actions may be out of character, potentially harmful and have a devastating impact on the patient and their family. n Patients and their carers should be informed about the risk of impulsive and compulsive behaviour and advised that if this occurs, the patient should not stop their medicine suddenly but should speak to their specialist urgently. n Excessive daytime sleepiness and sudden onset of sleep can occur with levodopa preparations and dopamine-receptor agonists. n Patients who have experienced excessive sedation or sudden onset of sleep should refrain from driving or operating machines until these effects have stopped occurring. n Management of excessive daytime sleepiness should focus on the identification of an underlying cause, such as depression, concomitant medicines or other Parkinson s symptoms, eg, nocturia leading to frequent waking in the night and tiredness in the day.

37 Case study Connie James Connie is a 72-year-old who comes into your pharmacy on a Tuesday morning after a bank holiday weekend. She was diagnosed with Parkinson s eight years ago and is a regular customer. You notice as she walks in that she has a shuffling gait, appears anxious and talks hesitantly and quietly. She tells you that she fell in her hallway last night. 1. What questions would you ask Connie? Focus on communication and consultation skills Discussion points n Why do you think you fell? n Are these symptoms new or have they been getting worse? n Have you been able to take your medicines today? n Did you remember to take your medicines on time? n It is important to try to identify the reason for Connie s problems with gait (shuffling, possibly the recent fall), for example, missed doses of medicines, progression of her condition, postural hypotension. n Consider the tone of your questioning so as not to make Connie feel guilty or embarrassed if she has missed doses. Continued on next page Parkinson s disease Book

38 Parkinson s disease Book 2 She tells you she has run out of her Madopar and Sinemet preparations and hasn t taken any since yesterday afternoon. You check her patient medication record (PMR) and see that her regular medicines are as follows: Medicine Co-careldopa 25/100 mg Madopar 12.5/50 mg dispersible Co-careldopa 25/100 mg modified release Rotigotine patch 4 mg/24 hours Escitalopram 20 mg Gaviscon liquid Dose One tablet four times daily One tablet in the morning One tablet at night Apply one patch daily One tablet daily 5-10 ml four times daily 2. What are your priorities for Connie? Focus on patient-centred care The focus should be on supplying Connie s Parkinson s medicines as quickly as possible. You could then try to find out why she ran out of her supply and discuss if there is any way you can help prevent this in the future. Ask if she often misses doses. Discussion points n Medicines need to be taken at specific times to ensure that control of symptoms is maintained without deterioration. n For a person with Parkinson s, not getting their medicines on time can mean the difference between being able to function independently at work or at home and becoming reliant on others for everyday activities. 1 n Make sure patients who have missed a dose know not to double up on their medicines at the next dose as this can lead to exaggerated sideeffects. n Patients may find it helpful to use a regular community pharmacy and give permission for the pharmacy to order their repeat prescriptions for them. n Assess the need for any other forms of support with adherence, eg, dispensing medicines in containers that the person can open, printing out timings on the pharmacy label. 38

39 n Check Connie is clear on how to apply her rotigotine patch. n Check Connie can swallow her oral medicines as swallowing can be impaired in Parkinson s. n Find out more about the Parkinson s UK Get it on time campaign at: You phone Connie s GP and explain the situation. The GP confirms that he would like you to supply the medicines and a prescription will follow by lunchtime. 3. What action would you take if you didn t have one of the medicines in stock? Focus on therapeutics Discussion points Discuss the possible options with Connie to minimise any further delays. n Options: n Make the dose up using other strengths of the same medicine. n Dispense a different brand or generic form of the same medicine. While there is no national guidance on switching between brands of Parkinson s medicines some specialist teams do have a policy of using brand-specific medicines. Parkinson s UK recommends that medicines should not be switched between brands and generic versions unless absolutely necessary. Where switching does occur, this should be explained to the patient/carer to help reduce any anxiety or confusion. n To avoid running out of stock in the future: n ensure that you are aware of how and where to source the range of Parkinson s medicines without delay n make sure that you always keep a stock of regular patients usual medicines. You give Connie a glass of water to take her dispersible Madopar. While waiting for the medicine to work you overhear her asking the medicines counter assistant to recommend a laxative. Continued on next page Parkinson s disease Book

40 Parkinson s disease Book 2 4. List the non-motor symptoms of Parkinson s that Connie might be experiencing. Focus on clinical knowledge From the symptoms described and her PMR, Connie may be suffering from anxiety, depression, postural hypotension (possible cause of recent fall), constipation and heartburn. Discussion point n More detail on the non-motor symptoms of Parkinson s can be found in the answer to Moving into focus question 2 above. 5. What advice would you offer her to help her manage these symptoms? Focus on therapeutics Connie may benefit from OTC laxatives. You should also advise her to make sure she is drinking adequate fluids, which may help relieve the constipation as well as helping to maintain blood pressure. Discussion points n Connie should be encouraged to see her specialist team if she is falling often as this could be a sign that the disease is worsening. n Supporting Connie to manage her medicines more effectively may help reduce her anxiety, but if this continues to be a problem she should be advised to see her GP or specialist team. n Advise Connie to take her Gaviscon after meals to maximise its effect (but check for any interactions with her Parkinson s medicines). 40

41 6. Do you know what services you could refer or signpost Connie to for additional help? Focus on pateint-centred care Discussion points Base your advice on discussions with Connie about her needs and priorities. Options include: n Parkinson s UK website and free telephone helpline n PDNS, specialist pharmacist, consultant n GP n Age UK befriending service call or find more information at: n Would Connie benefit from social support? Ask, Is there anyone at home to help you? n Take steps to ensure Connie is confident about what will happen next, eg, phone the GP to discuss her medicines, offer adherence support, supply her with a Parkinson s UK medication card (available from: Parkinson s disease Book

42 Parkinson s disease Book 2 Clinical vignettes Clinical vignette 1 You hand Karen Taylor s first prescription for co-careldopa tablets to her. You are about to discuss her new medicine with her but she bursts into tears, explaining that she is only 32 years old and thought Parkinson s was something that only affects older people. She says she wants to know all about the condition. How would you respond to Karen? The bottom line: Offer Karen somewhere private, eg, consultation room, to discuss her concerns further. Why? Newly diagnosed Parkinson s patients are likely to feel overwhelmed by their diagnosis and the volume of information that may accompany it. If you are unable to set aside sufficient time immediately, agree another appointment time to answer her questions as soon as possible. Supporting the statements n Newly diagnosed patients may need more information on the importance of timings of doses and may need signposting to resources and support. n Offer information about how their Parkinson s medicines work and what effects they can expect, for example, the on-off effects of levodopa leading to difficulty moving. n Offer information about the side-effects to look out for. n Ask open questions and be guided by the patient s responses and needs. n Make sure the patient feels able to ask questions and knows they can come back to you at any time. n Signposting options have been discussed in detail in the answer to Practice point 4 above but in Karen s case the American Parkinson Disease Association National Young Onset Center (www. youngparkinsons.org) may be particularly appropriate given her age. n The Parkinson s UK booklet Drug treatments for Parkinson s may also be helpful (available from: 42

43 Clinical vignette 2 Milan Kostic is getting ready to go on holiday and has come to buy some medicines to take with him. The medicines counter assistant calls you over and says Milan would like some co-codamol and something for hayfever and travel sickness, but that he also takes medicines for Parkinson s. How would you respond to Milan? The bottom line: Advise Milan that some medicines may make his Parkinson s symptoms worse. Why? Any medicine that blocks dopamine receptors could make the symptoms of Parkinson s worse. Some OTC medicines can interact with Parkinson s medicines, eg, nasal decongestants or diphenhydramine with MAO-B inhibitors. Other OTC medicines may have side-effects that exacerbate Parkinson s symptoms in other ways. Supporting the statements n Caution is required when using antihistamines, especially cinnarizine which can mimic Parkinson s symptoms if used long-term. Sedating antihistamines may increase the risk of falls. n Opioid analgesics may cause drowsiness and increase the risk of falls. n More information about potential interactions can be found in Appendix 1 of the BNF. NICE clinical knowledge summaries ( org.uk/parkinsons-disease) also have information about which medicines to avoid in Parkinson s. Parkinson s disease Book

44 Parkinson s disease Book 2 Clinical vignette 3 Zara Ahmed comes to talk to you about her husband. He was diagnosed with Parkinson s three years ago. Recently she has noticed that he spends a lot of time on the computer and lots of parcels are arriving from various shops. He has become secretive and she is wondering if this can be related to his Parkinson s. How would you respond to Zara? The bottom line: You should inform Zara that you are unable to discuss her husband s care without his consent but that you would advise an urgent review of his treatment with his specialist team. Why? It is possible that Zara s husband is showing signs of impulsive and compulsive behaviour but it is not possible to say this definitively. Any discussions about his medicines without his consent would be a breach of confidentiality. Supporting the statements Impulsive and compulsive behaviour may be a side-effect of levodopa and dopamine agonists. The BNF advises that if a patient develops impulsive and compulsive behaviour, the medicine should be withdrawn or the dose reduced until symptoms resolve. 2 It is important not to stop levodopa or dopamine agonists suddenly due to the risk of severe reactions such as neuroleptic malignant syndrome. Urgent specialist review is required. Possible signs of impulsive and compulsive behaviour include: n increase in weight n binge eating n secretive behaviour about finances or phone/internet usage n carrying out tasks repetitively n change in sexual behaviour n taking more Parkinson s medicines n aggressive behaviour. 44 You could signpost Zara to the Parkinson s UK helpline ( ) or address (hello@parkinsons.org.uk) for a confidential service providing support to anyone affected by Parkinson s. Reassure her that if her husband s behaviour is related to his Parkinson s, it can be managed by adjusting his medicines.

45 Clinical vignette 4 Hong Lee has had Parkinson s for two years and presents with a prescription for two new medicines. His medicines regimen is now as follows: Medicine Co-beneldopa dispersible 62.5 mg Stavelo 100/25/200 mg Co-careldopa 50/200 mg modified release Amlodipine 5 mg Aspirin 75 mg Atorvastatin 20 mg Dose One tablet on rising (new) One tablet four times daily (new) One tablet at night One tablet in the morning One tablet in the morning One tablet at night He asks for your advice on what to do if he misses a dose as he is worried that he now has too many tablets to remember and he is still working full time. How would you respond to Hong? The bottom line: Advise Hong that it is important for him to try not to miss any doses, and offer him an MUR so that you can review his regimen in detail and discuss potential strategies to support him to remember to take his medicines. Why? Medicines need to be taken at specific times to ensure that control of symptoms is maintained without deterioration. Supporting the statements n Setting aside the time for an MUR will help ensure Hong is using his medicines as effectively as possible. n Work with Hong to come up with solutions to help him remember to take his medicines on time while at work. n Ensure Hong knows not to double up on his doses of Parkinson s medicines if he misses one as this could lead to enhanced side-effects. n It may reassure Hong to know that he will learn to manage his condition with time as every patient s symptoms and their response to medicines varies throughout the day. He will become expert in knowing how late he can be with certain doses before suffering adverse effects and which doses are crucial to take on time. Visit the Consultation skills for pharmacy practice website to develop your consultation skills and learn more about taking a patient-centred approach. Parkinson s disease Book

46 Parkinson s disease Book 2 References 1. Parkinson s UK. Key information for community pharmacists. Parkinson s UK Joint Formulary Committee. British National Formulary 69. London: Pharmaceutical Press;

47 Notes Parkinson s disease Book

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