Parkinson’s is a degenerative neurological condition, for which there currently is no cure. It affects around 7,800 people in Wales – around one-in-340 of the adult population (this is the higher than the rate for the UK as a whole, as well as for any of the UK countries) – and the main symptoms are tremor, slowness of movement, and rigidity. Medication routines can be complex, and as Parkinson’s is a progressive condition, these routines need to be reviewed and adjusted to maintain their benefits. Katie Goates, Professional Engagement Programme Manager at Parkinson’s UK, outlines crucial medicine management tips for Parkinson’s, and how you can help.
The Get it on Time campaign was launched by Parkinson’s UK in 2006 to ensure that everyone with Parkinson’s in a care home or hospital gets their medication on time, every time.
The timely delivery of medication can be as crucial in managing Parkinson’s as insulin is for those with diabetes. But the latest audit from Parkinson’s UK, carried out in 2017, shows that less than half of people admitted to hospital always got their Parkinson’s medication at the right time.
Timely access to medication is essential in Parkinson’s; without medication, people with Parkinson’s can lose their ability to manage their symptoms and someone can go from being mobile and articulate, to unable to move, get out of bed, or speak. The difference between these medicated and un-medicated states is often referred to as being ‘on’ or ‘off’.
Not getting medication on time can also have long-term implications – we have heard devastating stories of people permanently losing the ability to walk after a hospital stay. For those who do recover, it can take months before they feel in control of their symptoms again.
Making Timely Medication a Priority in Wales
Although a long-standing campaign across the charity, in 2018 the Parkinson’s UK Cymru team determined that for the next two years it will have a clear focus on the Get it on Time campaign, particularly in relation to hospital inpatient stays, after hearing anecdotal evidence from a number of people living with Parkinson’s in Wales who had poor experiences of their medication being properly managed during a hospital stay.
The campaign was launched at the Welsh Assembly in April 2018, with assembly members in attendance able to directly engage with people affected by Parkinson’s who shared their positive and negative experiences of being in hospital, as well as how missing even a single dose of medication can impact their symptoms.
Assembly members were also able to hear from clinicians specialising in Parkinson’s about why getting Parkinson’s medication on time, every time, is essential.
Parkinson’s UK Cymru is continuing to engage with assembly members to ensure that they are aware of the issues surrounding medication management in Parkinson’s and are able to support the campaign. The team is also working with colleagues across the Excellence Network in Wales to pilot new approaches to making sure people with Parkinson’s get their medication on time, every time, when in hospital in Wales.
The UK Parkinson’s Excellence Network
Whether in the community or in hospital, pharmacists can play a key role in Parkinson’s medication management.
Parkinson’s UK established the UK
Parkinson’s Excellence Network in 2015. It brings together professionals working with people affected by Parkinson’s to enable them to share best practice.
The Excellence Network online learning hub offers free training programmes for professionals to improve the quality of care for people affected by Parkinson’s. Resources include key information booklets for community and hospital pharmacists.
To support peer learning and networking for pharmacists with an interest in Parkinson’s, the Excellence Network has also recently helped launch a special interest group for pharmacists: the Parkinson’s Specialist Pharmacy Network. This network plans to have an initial meeting in October 2019 in Birmingham.
Presentations will come from neurology specialist pharmacists, palliative care specialists, and community pharmacists with an interest in Parkinson’s.
For more information, and to express an interest in this first meeting, visit the Parkinson’s Specialist Pharmacy Network page on the Parkinson’s UK website, or email firstname.lastname@example.org.
Tips for Everyday
There are a number of things community pharmacists can do to help your patients take control of their Parkinson’s. The below tips come from Parkinson’s UK’s key information for community pharmacists.
Support Maintenance of Prescribed Medication Routines
• Ensure there is no delay in dispensing the range of prescribed Parkinson’s medications and that you are aware of how and where to get them quickly
• Prescribed medication is dispensed in containers that the person can open.
Parkinson’s can affect fine finger dexterity
• Branded preparations are issued where prescribed and are not substituted with generic versions unless absolutely necessary. Where substitution does occur, explain to the patient and carer why a different preparation has been dispensed to help reduce any anxiety or confusion
Help People to Understand their Medication Routines, What Medication They areTaking, and Possible Side-Effects
• Perform a Medicines Use Review with your Parkinson’s patients or an equivalent service (where applicable and appropriate)
Think Through the Mechanisms of Action When a Person with Parkinson’s is Prescribed, or is Considering Purchasing, a New Over-the-Counter Medicine
• Any drug that blocks dopamine receptors could make the symptoms of Parkinson’s worse or even mimic Parkinson’s symptoms without the condition being present
Help Care Home Staff to Give Medication on Time
• Print out timings on the pharmacy label, adding them to any blister packs issued and printing out timings on the medication administration record
• Make sure care home staff and domiciliary staff you work with understand the importance of keeping to the prescribed medication routine and adjusting activities accordingly
Support People with Hospital Admissions
• Make sure that your patients have an up-to-date list of their medication on them at all times with clear information about the preparation, dosage, and timing
• Provide information that will support people with Parkinson’s to administer their medication themselves in hospital if they are able to
• Review medication of a person with Parkinson’s in your community after they are discharged as their needs may have changed
Support from Parkinson’s UK
• Speak to the Parkinson’s UK helpline (0800 800 0303) if you have any queries about Parkinson’s medications. The helpline is staffed by trained Parkinson’s nurses who can provide advice about medications. The opening times are Monday-to-Friday: 9am-to-7pm, Saturday: 10am-to-2pm (closed Sundays / bank holidays). Alternatively, you can email email@example.com
• Parkinson’s UK local advisers can offer one-to-one information and emotional support to people with Parkinson’s, their families, and carers. In addition, our network of local groups enables people with Parkinson’s and their carers to meet others and get involved in activities. Visit www.parkinsons.org.uk/information-and-support
• Speak to Rachel Williams, Policy Campaigns and Communications Manager – Wales for more information about the Get it on Time campaign in Wales and how you can get involved at firstname.lastname@example.org, or 0344 225 3715
Find Out More About
Parkinson’s – Education and Training
Parkinson’s UK not only provides information and support to people affected by Parkinson’s, we also provide specific support to professionals.
You can view and order our full range of resources for professionals at www.parkinsons.org.uk/professionals.
About Parkinson’s UK
Parkinson’s UK is the UK’s leading charity supporting those with the condition. Its mission is to find a cure and improve life for everyone affected by Parkinson’s through cutting-edge research, information, support, and campaigning.
Contact the team for advice, information, and support, or call the free, confidential helpline on 0808 800 0303.