Froze. Couldn't move. No voice. Very anxious. Affected speech and mobility. Got shaky, dizzy, hard to move at times, anxious, tired. Agitated.Frustrated. Frightened, anxious, worried, tired. Unable to function… Became agitated, frustrated, anxious. When he doesn't get his medson time it's like a panic attack and he can't seem to concentrate and shaking starts. Sent her into total confusion, hallucinations and so muchmore, it was terrible. Severe shaking and unable to hold a conversation and therefore unable to ask to be taken to the toilet amongst otherthings. Became more confused, unsettled. Late and including severe dyskinesia and overheating spells. Loss of mobility and freezing episodes.More unstable and tremor increased Legs and arms stopped functioning as they stiffened up. Could then not walk or use hands. Tremors,mobility, unsteady, slurred speech, couldn't speak a full sentence. Froze. Couldn't move. No voice. Very anxious. Affected speech and mobility.Got shaky, dizzy, hard to move at times, anxious, tired. Agitated. Frustrated. Frightened, anxious, worried, tired. Unable to function…Became agitated, frustrated, anxious. When he doesn't get his meds on time it's like a panic attack and he can't seem to concentrate andshaking starts. Sent her into total confusion, hallucinations and so much more, it was terrible. Severe shaking and unable to hold a conversationand therefore unable to ask to be taken to the toilet amongst other things. Became more confused, unsettled. Late and including severedyskinesia and overheating spells. Loss of mobility and freezing episodes. More unstable and tremor increased Legs and arms stoppedfunctioning as they stiffened up. Could then not walk or use hands. Tremors, mobility, unsteady, slurred speech, couldn't speak a full sentence.Froze. Couldn't move. No voice. Very anxious. Affected speech and mobility. Got shaky, dizzy, hard to move at times, anxious, tired. Agitated.Frustrated. Frightened, anxious, worried, tired. Unable to function… Became agitated, frustrated, anxious. When he doesn't get his medson time it's like a panic attack and he can't seem to concentrate and shaking starts. Sent her into total confusion, hallucinations and so muchmore, it was terrible. Severe shaking and unable to hold a conversation and therefore unable to ask to be taken to the toilet amongst otherthings. Became more confused, unsettled. Late and including severe dyskinesia and overheating spells. Loss of mobility and freezing episodes.More unstable and tremor increased Legs and arms stopped functioning as they stiffened up. Could then not walk or use hands. Tremors,mobility, unsteady, slurred speech, couldn't speak a full sentence. Froze. Couldn't move. No voice. Very anxious. Affected speech and mobility.Got shaky, dizzy, hard to move at times, anxious, tired. Agitated. Frustrated. Frightened, anxious, worried, tired. Unable to function…Became agitated, frustrated, anxious. When he doesn't get his meds on time it's like a panic attack and he can't seem to concentrate andshaking starts. Sent her into total confusion, hallucinations and so much more, it was terrible. Severe shaking and unable to hold a conversationand therefore unable to ask to be taken to the toilet amongst other things. Became more confused, unsettled. Late and including severedyskinesia and overheating spells. Loss of mobility and freezing episodes. More unstable and tremor increased Legs and arms stoppedfunctioning as they stiffened up. Could then not walk or use hands. Tremors, mobility, unsteady, slurred speech, couldn't speak a full sentence.Froze. Couldn't move. No voice. Very anxious. Affected speech and mobility. Got shaky, dizzy, hard to move at times, anxious, tired. Agitated.Frustrated. Frightened, anxious, worried, tired. Unable to function… Became agitated, frustrated, anxious. When he doesn't get his medson time it's like a panic attack and he can't seem to concentrate and shaking starts. Sent her into total confusion, hallucinations and so muchmore, it was terrible. Severe shaking and unable to hold a conversation and therefore unable to ask to be taken to the toilet amongst otherthings. Became more confused, unsettled. Late and including severe dyskinesia and overheating spells. Loss of mobility and freezing episodes.More unstable and tremor increased Legs and arms stopped functioning as they stiffened up. Could then not walk or use hands. Tremors,mobility, unsteady, slurred speech, couldn't speak a full sentence. Froze. Couldn't move. No voice. Very anxious. Affected speech and mobility.Got shaky, dizzy, hard to move at times, anxious, tired. Agitated. Frustrated. Frightened, anxious, worried, tired. Unable to function…Became agitated, frustrated, anxious. When he doesn't get his meds on time it's like a panic attack and he can't seem to concentrate andshaking starts. Sent her into total confusion, hallucinations and so much more, it was terrible. Severe shaking and unable to hold a conversationand therefore unable to ask to be taken to the toilet amongst other things. Became more confused, unsettled. Late and including severedyskinesia and overheating spells. Loss of mobility and freezing episodes. More unstable and tremor increased Legs and arms stoppedfunctioning as they stiffened up. Could then not walk or use hands. Tremors, mobility, unsteady, slurred speech, couldn't speak a full sentence.Froze. Couldn't move. No voice. Very anxious. Affected speech and mobility. Got shaky, dizzy, hard to move at times, anxious, tired. Agitated.Frustrated. Frightened, anxious, worried, tired. Unable to function… Became agitated, frustrated, anxious. When he doesn't get his medson time it's like a panic attack and he can't seem to concentrate and shaking starts. Sent her into total confusion, hallucinations and so muchmore, it was terrible. Severe shaking and unable to hold a conversation and therefore unable to ask to be taken to the toilet amongst otherthings. Became more confused, unsettled. Late and including severe dyskinesia and overheating spells. Loss of mobility and freezing episodes.More unstable and tremor increased Legs and arms stopped functioning as they stiffened up. Could then not walk or use hands. Tremors,mobility, unsteady, slurred speech, couldn't speak a full sentence. Froze. Couldn't move. No voice. Very anxious. Affected speech and mobility.Got shaky, dizzy, hard to move at times, anxious, tired. Agitated. Frustrated. Frightened, anxious, worried, tired. Unable to function…Became agitated, frustrated, anxious. When he doesn't get his meds on time it's like a panic attack and he can't seem to concentrate andshaking starts. Sent her into total confusion, hallucinations and so much more, it was terrible. Severe shaking and unable to hold a conversationand therefore unable to ask to be taken to the toilet amongst other things. Became more confused, unsettled. Late and including severedyskinesia and overheating spells. Loss of mobility and freezing episodes. More unstable and tremor increased Legs and arms stoppedfunctioning as they stiffened up. Could then not walk or use hands. Tremors, mobility, unsteady, slurred speech, couldn't speak a full sentence.Froze. Couldn't move. No voice. Very anxious. Affected speech and mobility. Got shaky, dizzy, hard to move at times, anxious, tired. Agitated.Frustrated. Frightened, anxious, worried, tired. Unable to function… Became agitated, frustrated, anxious. When he doesn't get his medson time it's like a panic attack and he can't seem to concentrate and shaking starts. Sent her into total confusion, hallucinations and so muchmore, it was terrible. Severe shaking and unable to hold a conversation and therefore unable to ask to be taken to the toilet amongst otherthings. Became more confused, unsettled. Late and including severe dyskinesia and overheating spells. Loss of mobility and freezing episodes.More unstable and tremor increased Legs and arms stopped functioning as they stiffened up. Could then not walk or use hands. Tremors,mobility, unsteady, slurred speech, couldn't speak a full sentence. Froze. Couldn't move.No voice. Very anxious. Affected speech and mobility. Got shaky, dizzy, hard to move attimes, anxious, tired. Agitated. Frustrated. Frightened, anxious, worried, tired. Unable tofunction… Became agitated, frustrated, anxious. When he doesn't get his meds on timeit's like a panic attack and he can't seem to concentrate and shaking starts. Sent her intototal confusion, hallucinations and so much more, it was terrible. Severe shaking and unableto hold a conversation and therefore unable to ask to be taken to the toilet amongst otherthings. Became more confused, unsettled. Late and including severe dyskinesia andoverheating spells. Loss of mobility and freezing episodes. More unstable and tremorincreased Legs and arms stopped functioning as they stiffened up. Could then not walk oruse hands. Tremors, mobility, unsteady, slurred speech, couldn't speak a full sentence.Froze. Couldn't move. No voice. Very anxious. Affected speech and mobility. Got shaky,dizzy, hard to move at times, anxious, tired. Agitated. Frustrated. Frightened, anxious,worried, tired. Unable to function… Became agitated, frustrated, anxious. When he doesn'tget his meds on time it's like a panic attack and he can't seem to concentrate and shakingstarts. Sent her into total confusion, hallucinations and so much more, it was terrible.Severe shaking and unable to hold a conversation and therefore unable to ask to be takento the toilet amongst other things. Became more confused, unsettled. Late and including

get it on Time

People with Parkinson’s in Scotland must gettheir medication on time or

the consequences can be devastating.

2019-2020GET It On tIme

Contents

2

Introduction

Summary and recommendations

Parkinson’s and medicationMissed doses can be fatal

Impact on scarce hospital resources What does it mean to get medication “on time”?

How big a problem is it?

Making a differenceStaff education

Self-administration of Parkinson’s medicinesAlert system

Electronic prescribing Recording Parkinson’s medication incidents

Supporting unpaid carers -open visiting

Resources Going into hospital with Parkinson’s?

Giving feedbackFor professionals

References

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3

Introduction

This report highlights systematic failures inScotland’s hospitals that mean that people withParkinson’s don’t receive their vital medication at

their prescribed times.

Parkinson’s is complex. People typically take differentmedicines at specific times each day - and these oftendo not coincide with ward drug rounds. If people don’tget their Parkinson’s medication at the right time anddose, the results can be catastrophic. Some peoplebecome extremely unwell very quickly. It can take weeksto regain symptom control, and some people neverrecover.

There are around 12,400 people with Parkinson’s in Scotland - a numberwhich is set to increase by 20% over the next decade. About a quarter ofpeople with Parkinson’s will be admitted to hospital at least once each year.

Every time someone with Parkinson’s is admitted to hospital they run the riskof medication errors making their Parkinson’s symptoms worse. That riskbecomes reality all too often - our report shows that more than half of allParkinson’s drug doses administered in hospital are late or missed.

The responsibility firmly lies with Health boards to really examine therecommendations within this report and take action. That includes makingsure that ward staff understand that Parkinson’s medicines timings arecrucial, and have systems in place to support administering medication ontime.

NHS Scotland is rightly proud of the way that the Scottish Patient SafetyProgramme has implemented systems to protect patients from preventableharm - and we believe that Parkinson’s medication issues errors must betackled in the same way.

The solutions to this life-threatening problem already exist. They’ve beendeveloped by hardworking and under-resourced Parkinson’s nurse specialists,doctors and pharmacists across Scotland. With around 215 people withParkinson’s in hospital in Scotland on any given day, our overstretched nursespecialists can’t be on the ward every time someone with Parkinson’s needstheir medication, and they shouldn’t need to be. Responsibility for ensuringthat ward staff have the resources and systems they need to deliver drugs ontime rests with Health boards. Parkinson’s UK Scotland will be glad to offerour expertise and support to help them to do so.

Annie MacleodDirector

Parkinson’s UK Scotland

Parkinson’s is very complicated.Everyone with Parkinson's has anindividual medication regime to

manage their symptoms. When peoplewith Parkinson's are in hospital, theirmedication is often missed or given at thewrong time, which can make them very ill.These medication errors are common, andthey cause harm. They are alsopreventable.

Many of the solutions already exist. TheParkinson’s clinical community has madehuge progress - undertaking audits,developing protocols and systems, anddelivering education and guidance toward-based colleagues.

It’s now time for boards to put theirgroundwork to use. NHS Scotland needsto prioritise and enable changes at scaleso that people get their Parkinson’smedication on time, every time when theyare in hospital, in any ward in Scotland.

Summary and recommendations

4

1NHS boards must prioritise Parkinson’s medication management and ensurethat Parkinson’s issues are on the agenda for education, clinical governance

and patient safety teams. Boards need to make it is as easy as possible forfrontline staff to improve the inpatient care that they provide for people withParkinson’s.

2NHS boards must promote opportunities for all ward staff and hospitalpharmacists to access brief learning about Parkinson’s as part of its

education and training offer. This should include the UK Parkinson’s ExcellenceNetwork 15-minute narrated powerpoint on medication management1 and theNHS Lothian learnPro module ‘Managing the Parkinson’s Patient in Hospital’.

3NHS boards must have a self-administration policy that enables people withParkinson’s to take their own medication, if they are able to do so. This policy

must be in date and supported by the correct hospital facilities, staff training,resources for patients and effective monitoring on how the policy is used.

4NHS Borders, NHS Highland and NHS Lanarkshire should develop anelectronic alert system to inform the local specialist Parkinson’s service

whenever anyone with Parkinson’s is admitted to hospital or changes ward.

5Scottish Government must ensure that all NHS boards prioritise theimplementation of electronic prescribing, with implementation complete by

2023 at the very latest.

6All NHS boards should prioritise using their electronic prescribing systems toenable ongoing monitoring of Parkinson’s medicine administration in hospital.

7All missed doses of Parkinson’s medication must be recorded as adverseevents, along with any other medication timing error where the person with

Parkinson’s has experienced harm.

8All NHS boards should introduce open visiting on all its wards so that unpaidcarers who want to continue supporting the person they care for while they

are in hospital are able to do so.

Recommendations

5

Parkinson’s and medication

People with Parkinson’s typically takedifferent medications several timesevery day. It is essential to maintain

precise timings and doses.

If people do not receive their Parkinson'smedication correctly, it can have a suddenand severe effect on them as theirsymptoms are no longer controlled.

The impact can be long-lasting. Somepeople take weeks to regain control oftheir symptoms, and others neverrecover.

Some people who have missedmedication in hospital report thatthey became so unwell that they

thought they were going to die:

“I normally take my tablets everytwo and a half to three hours, so

by early evening I had missedthree lots of medication, and I

was out of it, to be honest. I hadno idea what was going on.

... my wife could see that if Ididn’t get my medication soon, Imight die… It was a really close

call.” Jim, Tayside

“I could hear ... and I couldn’tspeak for myself. I thought I was

going.” Mel, Fife

In 2019, we asked people withParkinson's and carers in Scotland to tellus about their experiences of gettingmedication on time in hospital. Over 70people took part, and their comments areused throughout this report.2

One person told us that the person theycared for with Parkinson’s had died ofaspiration pneumonia after they were leftunable to swallow because they hadn’treceived their Parkinson’s medication.

In extreme cases, missed Parkinson’smedication can also trigger a potentiallyfatal condition. Parkinsonism-hyperpyrexia syndrome (also known asneuroleptic malignant-like syndrome) hasa mortality rate of 4% and causes long-term harm to about 1 in 3 people.3

Missed doses can be fatal

People maybe unable to move, speak, eat or•swallow

experience uncontrolled movements or•pain

have severe anxiety •

develop distressing hallucinations and•delusions

Parkinson’s and medication

6

People who don’t get theirParkinson’s medication at thecorrect time and dose require more

intensive support.

If someone with Parkinson’s cannotswallow, they risk developing aspirationpneumonia, which can be fatal. If theyhave less control of their movement, theyare more likely to fall.

If someone is unable to eat or drink,manage toileting, or is experiencingmental health symptoms, more care isneeded from busy ward staff.

If someone with Parkinson’s can’t move,they can’t take part in physiotherapy orother activities, and their recovery will becompromised.

Giving medication at the wrong time, ormissing doses makes Parkinson’ssymptoms worse. Some research hasshown that this can lead to longer hospitalstays.4 5

NHS England data shows that on average,people with Parkinson’s spend about 78%longer in hospital than those withoutParkinson’s, and are almost twice as likelyto be in hospital longer than 3 months.6

Impact on scarce hospital resources

The National Institute of Health andCare Excellence (NICE) says thatpeople with Parkinson’s must get

their levodopa-based medication within30 minutes of the prescribed time.7 Theprescribed time will be based on theperson’s needs, and will not correspondwith ward drug round times.

It is also essential that medication isadministered at the right dose. Manydifferent preparations of medication areavailable.

What does it mean to get medication “on time”?

Understanding Parkinson’smedicationMedicines are critical to managingParkinson’s symptoms, but no currentlyavailable treatment can slow, stop orreverse the underlying progress of thecondition.

Parkinson’s medication regimes arecomplicated and individual to each person.People with Parkinson’s need theirmedication in order to move, and thedrugs can also have a powerful impact onother symptoms including mood, pain andcognition. Parkinson’s drugs also havesignificant side effects.

As Parkinson’s progresses, people typicallyrequire increasing quantities and types ofmedication. Prescribers work withindividuals and families to focus onmanaging the symptoms and side effectsthat have the biggest impact on everydaylife.

In the later stages of Parkinson's thecondition becomes more complex, and theside effects of some medicines can startto outweigh the benefits. If this happens,some drugs are usually withdrawn so theperson can benefit from the medicinesthey continue to take with fewer sideeffects.

“I mademyself

unpopularwith the staff

as I had toconstantly

ask, use mycall buzzer orgo to find the

appropriatenurse to try to

get mymedication.”

Parkinson’s and medication

7

We estimate that people with Parkinson’s fail toget their medication on time more than 100,000times a year in Scotland’s hospitals.12

There are around 12,400 peoplewith Parkinson’s in Scotland - andthey are at very high risk of hospital

admission. Around a quarter of peoplewith Parkinson’s will have at least onehospital stay in a year.

Each year:

around 3,000 people with Parkinson’s•are admitted to hospital - hundreds ofthem more than once

There are over 4,250 hospital•admissions, totalling more than77,000 bed days.

The average admission lasts around•18 days

Nearly 800 hospital stays last longer•than 28 days 8

Three recent surveys 9 10 11 have all foundthat fewer than half of those admitted tohospital in the UK always got theirParkinson's medication on time.

NHS Ayrshire and Arran has used itselectronic prescribing system to trackwhen every dose of Parkinson’smedication was administered against eachperson’s prescribed times. In 2015, fewerthan half of all Parkinson’s medicationswere on time - and this dropped to as lowas 35% at times. We think this is likely toreflect the situation across NHS Scotland.

How big a problem is it?

What happens if people don’t gettheir medication on time?“Froze. Couldn't move. No voice.”

“Made my husband very anxious. Affected hisspeech and mobility.”

“Got shaky, dizzy, hard to move at times,anxious, tired.”

“Agitated”

“Frustrated. Frightened, anxious, worried, tired.”

“Unable to function…”

“Became agitated, frustrated, then over tired andanxious.”

“When he doesn't get his meds on time it's like apanic attack and he can't seem to concentrateand shaking starts.”

“Legs and arms stopped functioning as theystiffened up. Could then not walk or use hands.”

“Not only [were meds] not on time but theycompletely changed her main Parkinson’s med ...which as I expected sent her into total confusion,hallucinations and so much more, [it]wasterrible.”

“Severe shaking unable to hold a conversationand therefore unable to ask to be taken to thetoilet amongst other things.”

“Became more confused, unsettled”

“Late and missed doses meant a resurgence ofsymptoms including severe dyskinesia andoverheating spells.”

“Loss of mobility and freezing episodes.”

“It made me more unstable & and tremorincreased”

“Tremors, mobility, unsteady, slurred speech,couldn't speak a full sentence.”

When putting together thisreport, health professionalsrepeatedly told us that staffing

pressures on the wards are reaching acritical point. We understand thatoverstretched ward staff are not in a goodposition to take on new learning oradditional tasks. It’s hard to listen to whatpatients and families are saying when it’s astruggle to meet basic care needs.

In June 2019, there were over 2,266adult hospital nurse vacancies in NHS

Scotland, and headcount declined by 2.4%over a year.13 There are ongoing financialpressures within Scotland’s public sector.

We support calls for additional frontlinenurses, and the Health and Care (Staffing)Act. But we also ask boards to includeParkinson’s medicines within their existingmechanisms - such as critical medicinespolicies and mandatory ward safetybriefings - to help improveimplementation.

People with Parkinson’s tell us thatthe people who look after them inhospital do not know much - if

anything - about Parkinson’s, and thatthey don’t understand the importance ofgetting Parkinson’s medication on time.

Although Parkinson’s is not as common assome conditions, people with Parkinson’sare at very high risk of hospital admission.People with Parkinson’s are commonlyadmitted to hospital after a fall, orbecause they have an acute infection, andmost have other health conditions too.

People with Parkinson’s can be treated inany hospital ward. That’s why it isimportant that staff in all types of adultward need to understand about the timingof Parkinson’s medication.

Making a difference

8

The ward context

Staff education

People told us“When we asked for the medication we were told he had to wait for the nurse doing hermedication round and they did not accept or understand why it must be given when thepatient needed it. They had no understanding of the consequences of giving it late.”

“Medication was always structured around the ward rounds and dependent on these.Found that carers had to explain [the] need to keep structured times … for Parkinson’smeds to nursing staff.”

“Nurses ensured that I took it on time, also they were very helpful.”

“I couldn't get the nursing or ward pharmacist understand how essential it was to getmy drugs on time!”

Our ask NHS boards must prioritise Parkinson’s medication management and ensure that Parkinson’s issues are on the agenda for education, clinical governance and

patient safety teams. Boards need to make it is as easy as possible for frontline staff to improve theinpatient care that they provide for people with Parkinson’s.

Making a difference

11 NHS boards responded to a Freedomof Information request about theParkinson’s training they provided tostaff.14 All said they provided ad-hoctraining by Parkinson’s specialist nurses,

typically targeted at ward staff in specificdepartments such as medical receiving,orthopaedics and medicine for olderpeople. Two boards reported specifictraining for its hospital pharmacy team.

9

Good practiceThe specialist Parkinson’s team in NHS Ayrshire and Arran offers two education days ayear for hospital staff, student nurses, and social care staff, typically reaching over 150colleagues each year. They also take part in general medical, nursing and pharmacyeducation programmes and ward-based training.

NHS Lothian’s Parkinson’s service hosts an annual teaching and training day forhealthcare staff caring for those with Parkinson’s. In 2018, over 80 multidisciplinarystaff attended this event. The team has also developed a learnPro online educationmodule.

In NHS Tayside, Parkinson’s nurses provide four staff training sessions each year atNinewells, and some at other hospitals.

Our ask NHS boards must promote opportunities for all ward staff and hospital pharmacists to access brief learning about Parkinson’s as part of its education

and training offer. This must include the UK Parkinson’s Excellence Network 15-minute narratedpowerpoint16 on medication management and the NHS Lothian learnPro module ‘Managing the Parkinson’sPatient in Hospital’.

Educating colleagues is an important partof a Parkinson’s specialist nurse’s remit.But this must be balanced with patientcare, and Scotland’s Parkinson’s nurses areoverstretched. In NHS Lanarkshire, NHSLothian, NHS Forth Valley and NHSHighland every Parkinson’s nurse has acaseload of about 600 people - arounddouble the recommended maximum. NHSOrkney currently has no local Parkinson’snurse.

We believe that NHS boards must adopt amore strategic approach to making sure

that hospital staff have the basicknowledge needed to keep people withParkinson’s safe in hospital. Thisinformation can be shared very quicklywith teams and individuals.

Parkinson’s UK has developed a free 15-minute narrated powerpoint, which isavailable online.15 The NHS LothianLearnPro module ‘Managing theParkinson’s Patient in Hospital’ takes lessthan half an hour to complete

Making a difference

10

Parkinson’s medication regimes arecomplex and personal, and mostpeople with Parkinson’s become

expert at managing their medications.

Yet it is common for people withParkinson’s to arrive in hospital and be toldthat they are not allowed to manage theirown medication - even when they areable to do so. Instead they must rely on

busy nurses to give them their essentialmedication. This increases the chancesthat they will not receive them on time.

People who have experienced this tell usthat they feel disempowered, anxious andfrustrated - especially when nurses don’tappreciate the reasons why people withParkinson’s need their medication on time.

Self-administration of Parkinson’s medicines

People told us“[medicines were] taken from us and put in a locked cupboard in the room.”

“My late wife had been self medicating prior to admission. Her medication was takenaway from her at admission and she only received it when the medication trolley wasdoing the rounds.”

No - NHS Ayrshire and Arran, NHSForth Valley, NHS Grampian, NHSGreater Glasgow and Clyde, NHSWestern Isles

Yes - but there are issues withimplementation - NHS Fife, NHSHighland

Yes - NHS Borders, NHS Fife, NHSLanarkshire, NHS Orkney, NHSTayside, NHS Shetland

We asked Scotland’s Health boards: Do you have a medication self-administration policy?

In some cases, people are not able toself-administer their medication. Thismay be because they are too unwell, or

because they lack capacity to manage it.

“...my father was suffering fromdelirium and was not always able

to remember to take meds ontime. To compound matters,

because of the delirium he wassuspicious of his meds and would

sometimes hide them in his pjpockets.”

Any self-administration of medicationpolicy should include an assessment ofthe person’s ability to self-administer. Itshould also enable staff to re-assesspeople if their capability changes duringtheir hospital stay.

Other patients must not be able to accessan individual’s Parkinson’s medications.Personal lockable facilities are needed toimplement self-administration policiessafely.

Making a difference

11

Making self-administration work

Many people report that there isconsiderable variability in nurses’ attitudesto self-administration of medication.

Some unpaid carers told us that theperson they support was allowed to self-administer their insulin or inhalers - butnot their Parkinson’s medication. This

demonstrates that people who are able toself-administer their medication are beingdenied the opportunity to do so - andthat the staff involved do not have anunderstanding of how critical it is toreceive Parkinson’s medication on time.

People told us“Some nurses were happy to let me self-medicate, while others were vehementlyopposed to it.”

“Depends what nurse is on duty.”

“Last visit I self medicated, previous visit in March last year I had to remind staff.”

“Staff [were] perfectly happy for me to handle all my medications!”

“Despite requesting a personal safe box to administer her own medication at her ownrequired times, she was told no and received them later and later, disrupting her abilitiesand mobility…”

Our ask NHS boards must have a self-administration policy that enables people with Parkinson’s to take their own medication, if they are able to do so. This policy

must be in date and supported by the correct hospital facilities, staff training, resources for patients andeffective monitoring on how the policy is used

Making a difference

Alert system

Most people with Parkinson’s inScotland are supported byspecialist health professionals,

including a consultant in older people’smedicine or neurology and a Parkinson’snurse, along with allied healthprofessionals.

However, when a person with Parkinson’sgoes into hospital, their inpatient care isprovided by health professionals who arenot part of their specialist Parkinson’steam, and who may not know much aboutthe condition.

It is vital that when someone withParkinson’s is admitted to hospital, theirspecialist team is alerted. This enablesParkinson’s specialists to work with wardstaff to make sure that they have the

information they need to provide highquality care - including vital informationabout the person’s medication regime.

“...request to speak to Parkinson’snurse was not passed on.”

After many years of work, the majority ofNHS boards in Scotland now have an alertsystem which tells the specialist teamwhen someone with Parkinson’s isadmitted. This compares extremely wellwith the rest of the UK. Only 44% of UKhospitals have an alert system in place.

Three boards - NHS Borders, NHSHighland and NHS Lanarkshire still have noalert system, and rely on ward staff orfamilies contacting the Parkinson’s nursewhen a person is admitted.

12

Good practiceIn NHS Greater Glasgow and Clyde, Parkinson’s clinicians worked with the InformationManagement team to develop a dashboard which automatically alerts specialist teamswhen someone with Parkinson's is admitted.

Since it was implemented in September 2017, the dashboard has increased earlycontact between Parkinson's nurses and wards, and improved medicines managementfor people with Parkinson’s.

NHS Grampian has recently employed a part time hospital-based Parkinson’s supportnurse. She uses the alert system to track when people with Parkinson’s are admitted toany NHS Grampian ward, and works with staff to promote better care (includingmedication management). This enables the other Parkinson’s nurses to focus onsupporting people with Parkinson’s in the community.

Our ask NHS Borders, NHS Highland and NHS Lanarkshire should develop an electronic alert system to inform the local specialist Parkinson’s service whenever anyone

with Parkinson’s is admitted to hospital or changes ward.

Making a difference

Electronic prescribing

13

Hospital Electronic Prescribing andMedicines Administration(HEPMA) has huge potential to

reduce medication errors in hospital.Scottish Government has identified that itcould improve complex prescribing forconditions including Parkinson’s.17

In NHS Ayrshire and Arran, electronicprescribing data is routinely used to audit

when Parkinson’s medication isadministered against the prescribed timesfor each individual patient. This enablesthe Parkinson’s team to take action ifmedicines are missed or delivered at thewrong time. Their system has alreadybeen extended to NHS Dumfries andGalloway.

Electronic prescribing is a potentialgamechanger for Parkinson's medicineadministration - but progress towards fullimplementation in Scotland remainsdisappointingly slow.

Audit Scotland asked ScottishGovernment for a timetable to implementHEPMA 14 years ago.18

The Scottish Government’s e-HealthStrategy 2014-201719 laid out an

expectation that “most NHS boards willhave some elements of HEPMAoperational by 2020.”

To date, only three NHS boards (NHSAyrshire and Arran, NHS Dumfries andGalloway and NHS Forth Valley) have fullyimplemented electronic prescribing,20 andScottish Government implementationfunding has been extended until 2023.21

Good practiceIn a prizewinning project, NHS Ayrshire and Arran Parkinson’s nurses worked with the e-pharmacy team to link individual’s prescribing data to a ward’s electronic whiteboard,placed in the nurses’ station.. This showed a symbol that turned green to indicate whenParkinson’s medication was due, and red when it became late.

This visual prompt significantly improved medication administration times. Before theintervention, only 10% - 41% of Parkinson’s medications were delivered on time on theward. This rose to 65% - 83% in the six weeks following the intervention.The team isnow extending the project.

Making a difference

Recording Parkinson’s medication incidents

Surveys of patient and carerexperiences, ward audits andelectronic prescribing data

consistently show that Parkinson’smedication errors are extremely commonin Scotland’s hospitals.

Yet this is not reflected in NHS patientsafety records.

We asked NHS boards if they could tell ushow many Parkinson’s medicationincidents had taken place in their boardsince 2017.

14

Information not recorded - NHS Borders,NHS Grampian, NHS Greater Glasgow andClyde, NHS Lothian, NHS Tayside

No reply - NHS Fife, NHS Highland

Information recorded - NHS Ayrshire andArran, NHS Dumfries and Galloway, NHS ForthValley, NHS Lanarkshire, NHS Orkney, NHSShetland, NHS Western Isles

Only seven boards (out of 11) were ableto tell us. These included three islandboards with very low numbers ofinpatients, and the three NHS boardswhich have fully implemented electronicprescribing.

The remaining five NHS boards wereunable to tell us how many reportedincidents had involved Parkinson’smedication. Between them, these boardsprovide care for over 59% of Scotland’spopulation.

Overall, only a handful of Parkinson’smedication errors were identified in thesystem, despite what people withParkinson’s and their families tell us abouthow commonly they experience seriousharm as a result of failing to get theirmedication on time.

NHS Scotland defines an adverse eventas: “... an event that could have caused (anear miss), or did result in, harm to peopleor groups of people. Harm is defined as anoutcome with a negative effect.”22

When someone has not received theirParkinson’s medication on time, it meetsthe criteria for an adverse event. Itshould, therefore, be recorded in line withthe NHS Scotland Adverse EventsFramework.

Parkinson’s UK Scotland is extremelyconcerned that it appears that Parkinson'smedication errors are not being identifiedor reported, and that opportunities tolearn and make systems and processesless dangerous for people with Parkinson'sare being missed.

We also believe that under-reportingreflects the lack of understanding amongbusy ward staff, who may not recognisethat worsening symptoms could becaused by a medication error. Thishighlights the need for boards to promotebrief Parkinson’s education opportunitiesto staff.

Making a difference

15

Scottish Government must ensure that all NHS boards prioritise•the implementation of electronic prescribing, with

implementation complete by 2023 at the very latest.

NHS boards should prioritise using their electronic prescribing systems to enable ongoing•monitoring of Parkinson’s medicine administration in hospital.

All missed doses of Parkinson’s medication must be recorded as adverse events, along with any•other medication timing error where the person with Parkinson’s has experienced harm.

Our asks

Making a difference

Supporting unpaid carers - open visiting

One of the important things thathospitals can do to make it easierfor people to be in hospital is to

offer open visiting. This enables unpaidcarers, family members and friends tosupport someone during their hospitalstay. If someone needs help to get theirmedication on time, the people who knowthem best can play an important role.

“Found [open visiting] veryhelpful and less stressful as I was

able to care for him.”

However, we heard from unpaid carersthat ward staff were not always willing towork with unpaid carers on medication,even though this is typically part of theircaring role at home. One carercommented that they weren’t allowed tohelp with medication, but could help with“drinks and sick bowls”.

We welcome the rapid progress that NHSScotland has made towards making openvisiting the norm. However, four NHSboards - NHS Ayrshire and Arran, NHSForth Valley, NHS Lothian and NHS Orkney- still have set visiting hours.

This means that individuals and familiesmust make their case for visiting outwiththese hours on a case-by-case basis. Thisis very stressful, and some people maymiss out. One carer told us that they wereonly able to visit outside visiting timesbecause they insisted.

16

Our ask NHS Ayrshire and Arran, NHS Forth Valley, NHS Lothian and NHS Orkney should introduce open visiting on all wards so that unpaid carers who want to continue

supporting the person they care for while they are in hospital are able to do so.

For people planning to go into hospitalParkinson’s UK has resources – andsupport – that can be downloaded

or ordered atparkinsons.org.uk/GIOTresources

Our free Get It On Time washbag helpsyou to inform hospital ward staff that youneed to take your medication on time.

It includes tips on preparing for a hospitalstay, a card to record your medication andwhen you take it, a laminated clock flyerto put by your bedside to prompt staffabout your medication, stickers that canbe put on hospital notes and a wallet-sized card to help staff understand moreabout Parkinson’s.

You can raise the profile of the Get iton Time message and improvefuture care for yourself and others

by providing feedback to the ward teamand hospital. Feedback can be positive orneutral, as well as negative.

Many people worry about complaining,but hospital staff are committed toproviding the best possible care, andcomplaining encourages organisations toaddress problems. You can findinformation about how to raise acomplaint on the NHS Inform website.23

The independent Patient Advice andSupport Service (PASS)24 can help youresolve concerns with NHS services.

You can also share your feedback on theindependent Care Opinion website25, orreport that you did not receive yourmedication on time to the Medicines andHealthcare Products Regulatory Agency(MHRA), using their Yellow Card Scheme.

“ I felt I had to do something.Although the outcome of my

husband’s last stay in hospital hasbeen traumatic for us, I hope

future patients will benefit. Sincethe complaint was made andprocedures have been gone

through, there is no bitterness oneither side. I wish it had never

happened of course, but the staffhave listened and, I hope, have

learned.” Jean, Fife

Resources

Going into hospital with Parkinson’s?

Giving feedback

17

Helpful websitesParkinson's UK - parkinsons.org.uk/goingintohospital

NHS Inform - nhsinform.scot

PASS - cas.org.uk/pass

Care Opinion - careopinion.org.uk/youropinion

MHRA Yellow Card Scheme -yellowcard.mhra.gov.uk

The UK Parkinson’s ExcellenceNetwork has collated helpfulresources to support better

medication management in hospitals.Here are some highlights.

Our 15-minute narrated powerpoint•presentation26

Get It On Time Poster, laminated clock•and stickers

Medicines optimisation consensus•statement27 which includes helpfultools for admissions, implementationand audit

Caring for your patient with•Parkinson’s booklet for ward staff28

See our professional resources library atparkinsons.org.uk/professionals/resources for more tools and information.

Good practice - NHS Grampian Parkinson’s medication on timeprojectParkinson’s UK Scotland is currently working with staff at Aberdeen Royal Infirmary toidentify what will improve Parkinson’s medication management. The team is testing fivemeasures on two wards:

Ensuring a range of Parkinson’s medication is kept in stock - and that staff know1where to access emergency supplies

15 minute narrated powerpoint for all staff2

Get it on Time sticker to be added to the Kardex 3

Including Parkinson’s information in the mandatory ward safety briefing 4

Using the Parkinson’s UK laminated clock poster 5

The project team also developed specific guidance on medications management forParkinson’s inpatients and this has now been added to the hospital intranet.

UK Parkinson’s Excellence NetworkThe professional-led UK Parkinson's Excellence Network brings people together todevelop and share skills, tools and insights. It aims to reduce variation in practice andimprove the quality of Parkinson's care.

In Scotland there are more than 300 health and care professional members, and threeactive regional groups covering the East, North and West of the country.

Find out more at parkinsons.org.uk/professionals or contact us atscotland@parkinsons.org.uk

Resources

For professionals

18

References

19

1 Parkinson’s UK. Parkinson's awareness: a15-minute online presentation for wardstaff. Available online athttps://www.parkinsons.org.uk/professionals/events-and-learning/parkinsons-awareness-15-minute-online-presentation-ward-staff. [Accessed 11October 2019]

2 Parkinson’s UK. Get it on Time Survey2019 (unpublished).

3 Newman EJ, Grosset DG, Kennedy PG.The parkinsonism-hyperpyrexia syndrome.Neurocrit Care. 2009; 10(1):136-40.Available from doi: 10.1007/s12028-008-9125-4.

4 Martinez-Ramirez D et al. Missingdosages and neuroleptic usage mayprolong length of stay in hospitalizedParkinson's disease patients. 2015. PLoSONE. 10:e0124356.

5 Lertxundi U et al. Medication errors inParkinson's disease inpatients in theBasque Country. 2017. Parkinsonism RelatDisord.36:57-62. doi:10.1016/j.parkreldis.2016.12.028.

6 Calculated from Low V et al. Measuringthe burden and mortality of hospitalisationin Parkinson’s disease: a cross-sectionalanalysis of the English Hospital EpisodesStatistics database 2009-2013. 2015.Parkinsonism and Related Disorders.S1353-8020(15)00052-8 doi:10.1016/j.parkreldis.2015.01.017.

7 National Institute of Health and CareExcellence. Quality standard: Parkinson’sdisease. 2018 London. NICE. Availablefrom: https://www.nice.org.uk/guidance/qs164/resources/parkinsons-disease-pdf-75545600441029 [Accessed 24September 2019]

8 NHS Information and Services Division(ISD). IR2019-01209 - Inpatientsdiagnosed with Parkinson's Disease orParkinson's Disease Dementia inNHSScotland: 2016/17 - 2018/19.Extracted 30 September 2019.

9 Parkinson’s UK. UK Parkinson’s Audit2017 Full Report. Parkinson’s UK, 2018.Available from:https://www.parkinsons.org.uk/professionals/past-audits [Accessed 1 October2019]

10 Parkinson’s UK. Get it on Time Survey2019 (unpublished).

11 Parkinson’s UK. Your Life, Your ServicesSurvey 2018. (unpublished)

12 This very conservative estimate iscalculated on the basis of the followingassumptions: that people with Parkinson’saccounted for 78,551 bed days inScotland’s hospitals in 2018-19 (ISDdata). That each person takes Parkinson’smedications 3 times each day (mostpeople with Parkinson’s take at least 4doses of Parkinson’s medicine per day, butwe have rounded this down); that half ofthese medicines are not delivered on time,giving a total of 117,827 Parkinson’smedication doses not given on time.

13 NHS Information and Services Division(ISD) NHS Scotland Workforce Information- as at 30 June 2019. Non-medical trend.2019. Available at:https://www.isdscotland.org/Health-Topics/Workforce/Publications/data-tables2017.asp {accessed 8 October2019]

14 Parkinson's UK. Freedom ofInformation request to NHS Boards inScotland. 2019. Unpublished.

15 Parkinson’s UK. Parkinson's awareness:a 15-minute online presentation for wardstaff. Available online athttps://www.parkinsons.org.uk/professionals/events-and-learning/parkinsons-awareness-15-minute-online-presentation-ward-staff. [Accessed 11October 2019]

16 Parkinson’s UK. Parkinson's awareness:a 15-minute online presentation for wardstaff. Available online athttps://www.parkinsons.org.uk/professionals/events-and-learning/parkinsons-awareness-15-minute-online-presentation-ward-staff. [Accessed 11October 2019]

17 Digital Health and Care Scotland.HEPMA National ImplementationProgramme Update – January 2019.Available athttps://www.digihealthcare.scot/wp-content/uploads/2019/04/DHSCSPB-21-January-2019-Paper-8-HEPMA.pdf[Accessed 25 September 2019]

18 Audit Scotland. A Scottish prescription:Managing the use of medicines inhospitals. 2005 Available at:https://www.audit-scotland.gov.uk/uploads/docs/report/2005/nr_050728_managing_medicines.pdf[Accessed 25 September 2019]

19 Scottish Government. eHealthStrategy 2014-2017. 2015. Availableonline athttps://www.gov.scot/publications/ehealth-strategy-2014-2017/ [accessed 25September 2019]

20 Digital Health and Care Scotland.HEPMA National ImplementationProgramme Update – January 2019.Available athttps://www.digihealthcare.scot/wp-content/uploads/2019/04/DHSCSPB-21-January-2019-Paper-8-HEPMA.pdf[Accessed 25 September 2019]

21 Digital Health and Care Scotland.HEPMA National ImplementationProgramme Update – March 2019.Available athttps://www.digihealthcare.scot/wp-content/uploads/2019/04/Paper-3-%E2%80%93-HEPMA-National-Implementation-Programme-Update-March-2019.pdf [Accessed 25 September 2019]

22 NHS Healthcare ImprovementScotland. Learning from adverse eventsthrough reporting and review A nationalframework for Scotland July 2018.Available athttp://www.healthcareimprovementscotland.org/our_work/governance_and_assurance/management_of_adverse_events/national_framework.aspx [Accessed 1October 2019]

23 NHS Inform. Complain about a GP,pharmacy, dentist or hospital in Scotland.Availableat:https://www.nhsinform.scot/care-support-and-rights/health-rights/feedback-and-complaints/complain-about-a-gp-pharmacy-dentist-or-hospital-in-scotland [Accessed 26September 2019]

24 Citizens Advice Scotland. PatientAdvice and Support Scotland. Available at:https://www.cas.org.uk/pass [Accessed26 September 2019]

25 Care Opinion Scotland. Available at:https://www.careopinion.org.uk/youropinion [Accessed 26 September 2019]

26 Parkinson’s UK. Parkinson's awareness:a 15-minute online presentation for wardstaff. Available athttps://www.parkinsons.org.uk/professionals/events-and-learning/parkinsons-awareness-15-minute-online-presentation-ward-staff. [Accessed 11October 2019]

27 Parkinson’s UK Medicines OptimisationConsensus Statementhttps://www.parkinsons.org.uk/professionals/resources/medicines-optimisation-consensus-statement [Accessed 26September 2019]

28 Parkinson’s UK caring for your patientwith Parkinson’s. Available at:https://www.parkinsons.org.uk/professionals/resources/caring-your-patient-parkinsons-booklet [Accessed 26September 2019]

T: 0344 225 3724E: scotland@parkinsons.org.ukW: parkinsons.org.uk/scotlandFacebook:facebook.com/parkinsonsukinscotlandTwitter: twitter.com/ParkinsonsUKSco

Free confidential helpline 0808 800 0303(Monday to Friday 9am - 7pm, Saturday 10am - 2pm). Interpreting available.Text Relay 18001 0808 800 0303 (for textphone users only).

Parkinson’s UK is the operating name of the Parkinson’s Disease Society of the United Kingdom. A charity registered in England and Wales(258197) and in Scotland (SCO37554). © Parkinson’s UK 04/19 (CS3355)

Parkinson’s UK in ScotlandSuite 1-14King James VI Business CentreRiverview Business ParkFriarton RoadPerth PH2 8DY

Parkinson's UK Scotland is the Parkinson's charity that drives bettercare, treatments and quality of life.

Together we can bring forward the day when no one fearsParkinson's.

Our staff team is largely home-based in communities acrossScotland, and we have over 40 local groups led by volunteers thatprovide friendship and support to people affected by Parkinson’s.

We have Parkinson’s local advisers covering every local authority,who provide a free and confidential information and advice serviceto anyone affected by Parkinson’s.

Parkinson’s UK also funds groundbreaking Parkinson’s research inScotland, the UK and worldwide.

Find out more about us at parkinsons.org.uk/scotland