The Patient Perspective – What Do Our Patients Need To Get The Most From Their Medicines?

Speaker: Mr. Wesley ScottEmail: scottw@uni.coventry.ac.uk 16th September 2015

Presentation Summary• Introduction• Who am I? • Why am I here? • Medicines optimisation-a patient perspective • What do patients need to optimise and manage their medicines

effectively? • What’s done at present and how could it be improved? • Doing more with less• Conclusions and final thoughts• Summary• Any questions?• References

Introduction

In this presentation we will explore the following:

• A patient’s perspective of medicines optimisation. • What patients need to optimise and manage their medicines effectively?• The process of medicines management for patients at present and how it could be

optimised.• How we can do more with less- it's not all about more money. • Explore some suggestions around how the present process of medicines

management could be optimised and improved from a patient’s perspective. • Your responses to a patient’s perspective (any questions?)

Who am I?• I’m Wesley and very proud to be an NHS patient. • I’m 31 years old. • Since birth been blessed with the perspective of somebody that has a severe

disability (Spastic Quadriplegic Cerebral Palsy) so I guess I'm one of those patients that could be classified as having a long-term condition.

• I have several other conditions (mental health difficulties and learning difficulties amongst other things) that are if not entirely, at least in part, caused or exacerbated by my cerebral palsy.

• Despite all of that, I live a full and active life assisted by lots of lovely people and many organs of the state (local authority, Independent Living Fund (ILF), NHS and my family among others).

• My full and active life involves me trying to complete a PhD and working with many agencies such as Coventry University and the NHS to offer the patient perspective.

Why am I here?

So, why am I here?• The patient perspective is a very important one, so I've come

here today to offer you my perspective on how I manage my medicines at present.

• To outline what works well.• What could be done better and to offer you my thoughts and

conclusions about the future of medicines management and optimisation.

Medicines optimisation- a patient perspective

As a patient with a long-term condition I’m reliant on medicines to help ease some of the symptoms of the conditions I have. Surprisingly, I don't take any medicines on a regular basis for my main condition.

I take approximately 4 medicines for conditions related to or exacerbated by my cerebral palsy and one for severe acne, these are:

- Quetipine- Citalopram- Colofac- Peptac- Tetralysal

Medicines management- a patient perspective continued....

So, it’s a fairly straightforward prescription and because I am well able to communicate and make my needs known, medicines management for me is fairly straightforward. I go to the Doctor, I get a prescription, I take it to the Pharmacist it gets dispensed. I can also talk to the Pharmacist about any concerns I may have or for advice.

But what if I couldn't communicate so easily? Would my life in terms of medicines management be so easy?

Based on the evidence that I’ve seen both anecdotal and factual, probably not.

What do patients need to optimise and manage their

medicines effectively?

Effective communication with multiple stakeholders.

Access to training for support workers and carers.

Guidance, advice and knowledge.

Access to both medicines and support when they are needed.

Regular reviews

Advocates

All professionals to understand the patient’s lifestyle and context.

All professionals to be friendly and approachable.

All professionals to be pro-active in promoting good medicines management.

A person-centred approach

Clear and correct labelling

Effective communication with multiple stakeholders

Think for a second, how many people are involved in the medicines management chain?

Well, the General Practitioner prescribes the medicine, the Pharmacist dispenses it. The Manufacturer, the patient is that it? Well, for most of us probably ‘yes’, for me and others with disabilities who else might be involved? Well, there’s the carer, both formal and informal. The District Nurse perhaps, other agencies like Social Services etc.

I wonder what would happen if there was a communication breakdown? Maybe a carer might order too much of a medication, if they don’t know it’s been stopped etc. It could in some circumstances be fatal, all because nobody bothered to communicate.

An interesting factBarbour (‘n.d’) and Sama (‘n.d’:4) “...states that the total impact of a message breaks down like this: 7 percent verbal (words), 38 percent vocal (volume, pitch, rhythm, etc) and 55 percent body movements (mostly facial expressions)”

So what does this mean for you? Well, some of the patients you deal with can’t communicate orally but that doesn't mean they can’t communicate, you just have to take time to understand their non-verbal communication.

And there are no excuses for poor communication

Just think of the many and varied ways people can communicate their needs. Not just orally, through e-mails, voice-mails, instant-messaging, body language, communication aids etc. Oh and don't forget the good old fashioned letter or note.

Access to training for support workers and carers

We make a lot of assumptions don’t we as people? You may assume that everybody can read in this day and age, not true (in fact “around 16 per cent, or 5.2 million adults in England, can be described as ‘functionally illiterate’” (National Literacy Trust 2015) therefore it can reasonably be assumed that not everybody can read labels on medications.

From my own experience I’ve had carers that don’t or have not read the label on the medicine box and given me codeine rather than Quetipine. Again, I can communicate, it may have been more serious if I couldn’t. Pharmacists and other healthcare professionals could help here by offering basic training and advice to people to stop medication errors.

Guidance, advice and knowledge

It’s often said that “knowledge is power” (Bacon ‘n.d’) or a little bit of knowledge can go a long way. I know certainly in the lectures I give I love seeing that light bulb moment when you’ve empowered someone to understand something they previously didn't. Pharmacists and other healthcare professionals could give advice that empowers people.

Access to both medicines and support when they are needed

Okay, hands up here, whose run out of medication when they should be taking it? We all do it, but for people with long-term conditions this could be fatal. Can the epileptic really afford to go without their medication “just this once?” Pharmacists have a role to play here, a person may not be able to get an appointment with their GP or may not want to sit in A & E or a walk-in centre for 3 or 4 hours just to get a prescription. But they may just tolerate going to see the Pharmacist whose known them for years. Pharmacists could then either point them in the direction of where they go to get a prescription or advocate for them to get one.

From a personal perspective here in June this year, I ran out of medication or should I say my carer broke one of my capsules. I went to a Pharmacist who said they needed a prescription in order to dispense one capsule because they didn't know me, they said if I was signed up for e-prescribing this wouldn't be a problem. So I signed up with them, not a problem but what would I do if I was on holiday? 4 hour wait in A & E/walk-in centre here we come!

Regular reviews

Things change over time, like our need for medicines but some people are scared to go to the Doctors or maybe just can’t communicate that one of their medicines actually has terrible side-effects. Pharmacists can help here by regularly reviewing the medicines or suggesting that people go to their GP. I bet you are more likely to come into contact with a Pharmacist on a regular basis then your own GP.

Okay, that’s the theory, but from my perspective I've only been approached once for a review.

AdvocacyNow, we all know perhaps I'm far too vocal so I can look out for my own interests. But what about those who can’t? Again, Pharmacists have a role here. You will probably see the patient fairly regularly, at least once a month, maybe more. If you think something’s not quite right or the patient tells you something that you think other healthcare professionals should know, would it not be sensible to say something and help someone get their problem sorted or at least signpost appropriately?

All professionals to understand the patient’s lifestyle and context

Get to know your patients a bit; what they like, what they don’t like etc. It may help you to understand why they manage their medicines in the way they do. For example, if you know someone’s forgetful and doesn't always order their repeat prescriptions perhaps you could offer help?

All professionals to be friendly and approachable

In the old days, perhaps people thought the Doctor knew what was good for them so they took their advice and were scared to question their judgement. Even the body language you use is important, if someone’s frowning and talking down to you, would you feel like you could approach them? After all, remember according to Barbour op.cit and Sama op.cit “... the total impact of a message breaks down like this: 7 percent verbal (words), 38 percent vocal (volume, pitch, rhythm, etc) and 55 percent body movements (mostly facial expressions)”.

All professionals to be pro-active in promoting good medicines optimisation

Pharmacists train for 5 years, 1 less than a Doctor and are, I would like to think highly knowledgeable and well qualified so share your assets with people, be pro-active, use the knowledge you have to promote good medicines management and stop people slipping into bad habits.

Did you know “a report by the Department of Health estimates that unused medicines cost the NHS around £300 million every year” (Medicine Waste.com ‘n.d’).

In a time of austerity this is not acceptable, a pro-active approach may reduce or eliminate waste.

A person-centred approach

“Person-centred care aims to ensure a person is an equal partner in their healthcare. The individual and the health system benefit because the individual experiences greater satisfaction with their care and the health systems is more cost-effective.

Key concepts that combine to make person-centred care a reality are:

• respect and holism• power and empowerment• choice and autonomy• empathy and compassion.” (Royal College of Nursing (2015)

Medicines help people get well, how can we manage medicines effectively if those people aren’t at the centre of everything we do.

So, what difference would a person-centred approach make to medicines management? Reduction of waste, more effective treatments to name but a few.

What’s done at present and how could it be improved?

In theory, the NHS is a National Health Service, one big agency. In practice this is not the case; it's made up of lots of little departments all working, it would appear, autonomously. Unless they have to, GPs don’t speak to Pharmacists and pretty much vice-versa, so why not, have Pharmacists working in GPs surgeries and alongside District Nurses etc this would improve communication, maybe even reduce waste etc.

Embrace technology, I know this is happening in some areas but it’s slow, it could speed up communication, for example, by sending an electronic prescription across to the Pharmacist or the GP could even instant-message or voice-message the Pharmacist with queries or updates to patient’s medications etc.

Doing more with less I’m going to be controversial here, not all of the NHS’s problems can be solved with more money alone, after all £300 million is wasted every year by the inappropriate management and use (or non-use) of medicines. There are simple things the NHS could do that cost hardly anything, most of it comes down to communicating and improving the way people communicate. Maybe if Pharmacists were in GP surgeries they could help the GP by filtering those that just need advice thus giving more appointments to those who really need them. I passionately believe there is a lot of money in the NHS that is wasted and it is not run as efficiently as it could be. More can be done with the existing budget of the NHS that would probably go some way to easing its financial problems.

Conclusions and final thoughts It’s not all about big fancy initiatives, perhaps it’s more about communicating in ways user’s of the NHS understand, providing simple things, asking simple questions, like ‘How are you?’ and ‘Did you get any side effects from the new medication you’ve started?’ easy isn't it? So why are we so bad at doing it? Perhaps because “It’s not my problem”.

As I hope you’ve seen everybody has a role to play in good medicines management and optimisation by:

• Being pro-active • Being approachable • Being a good advocate for others and what you believe in

SummarySo, in this presentation we have:

• Explored medicines management from a patient’s perspective. • Outlined what patients need to enable them to practice good medicines

management.• Underline the importance of good communication.• Looked at the present process of medicines management and how it

might be improved.• Given some suggestions for doing more with less.

Thank you for listening, any questions?

References

Bacon. F. (‘n.d’) ‘On Truth and Reality –The Wave Structure of Matter in Space’-Philosopher-Sir Francis Bacon [online] available from http://www.spaceandmotion.com/philosophy-sir-francis-bacon-biography.htm [14 May 2015]

Barbour A. (‘n.d’) Louder than Words: Nonverbal http://www.minoritycareernet.com/newsltrs/95q3nonver.html [11 April 2015]

Medicinewaste.com (n.d) ‘Only order what you need: The Campaign-What’s the problem?’ [online] available from http://www.medicinewaste.com/campaign [ 11 April 2015]

National Literacy Trust (2015) ‘Adult Literacy-How many illiterate adults are there in England?’ [online] available from http://www.literacytrust.org.uk/adult_literacy/illiterate_adults_in_england [ 12 April 2015]

Royal College of Nursing (2015) ‘Person-centred care’ [online] available from http://www.rcn.org.uk/development/practice/cpd_online_learning/dignity_in_health_care/person-centred_care [ 11 April 2015]

Sama, G. (‘n.d’) ‘The role of non-verbal communication in consecutive interpreting process’ [online] available from http://www.academia.edu/4683122/THE_ROLE_OF_NON-VERBAL_COMMUNICATION_SKILLS_IN_CONSECUTIVE_INTERPRETING_PROCESS [11 April 2015] as cited in Barbour A. (‘n.d) Louder than Words: Nonverbal http://www.minoritycareernet.com/newsltrs/95q3nonver.html [11 April 2015]

Image Sources‘Communication’ [online] available from http://www.upsu.net/perch/resources/communications.jpg [ 12 April 2015]

‘Communication diagram’ [online] available from http://www.tutorialspoint.com/management_concepts/images/communication_method.jpg [12 April 2015]

Review image [online] available from http://cdn-media-2.lifehack.org/wp-content/files/2012/07/weekly-review.jpg [12 April 2015]