Sylvia Bailey is a member of Pharmacy Research UK’s Scientific Advisory Panel and is working as an adviser on the MEMORABLE project. We spoke to her to find out a little more and to see what she thinks needs to happen in pharmacy to improve patient care.
Background
Sylvia Bailey
The MEMORABLE project is designed to develop a framework for a novel multi-disciplinary, multi-agency intervention(s) to improve medication management in community-dwelling older people on complex medication regimens using a realist approach. This research was profiled on BBC Breakfast on the 21st June.
What inspired you to get involved in the MEMORABLE project?
I’m not necessarily inspired just by this particular project, but all health research that I feel I can contribute to from a patient and public perspective. I’ve got a background in primary care management and as such I have been involved with setting up and running patient focus groups. It was obvious from the results of those groups that patient and public perspective greatly assists the shaping and delivery of our NHS services, in both primary and secondary care. I don’t think that research can be successful unless there’s collaborative working and equal partnership between academics, the patients and the public. We have to say how it is. We have to say how well the services are that we are receiving are working and to be honest in explaining what we would like to happen to improve those services and experience. Additionally to explain what is working for us, what is going well. A patient perspective is needed as well as an academic one. I know the importance of it, researchers have been missing out by not understanding a patient and carer perspective. Now, as I understand it, it is part and parcel of the government framework.
Following on from that, it’s rare you see pharmacy research featured on the TV. This project was on BBC breakfast which I think evidences how important the issue is to such a large number of people. What kind of outcomes are you hoping to see from your involvement in this research?
I’d like to see more communication between the multidisciplinary teams. I’d like to see more carer support and regular health checks for carers – they are pivotal to helping older people and vital when caring for someone with the onset of dementia. Very often carers are neglected. At the practice I am registered with, our patient group initiated the collection of data identifying carers so they can be offered regular health checks- probably 2 or 3 a year. From research data it’s obvious that complex medication regimes, not managed correctly, put patients at risk. It would be helpful to have easier, simpler packaging for prescription medication. From a focus group I chaired involving older patients and carers, it was discovered that some of the pharmaceutical companies don’t appear to give much thought to the packaging of their drugs taken by older and perhaps frail patients or who those who may be physically impaired. It’s often quite difficult to undo a bottle with a safety catch or open the packaging to extract pills from foil or plastic strips.
I’d also like to see more use of pharmacy technicians. People who are skilled at medication reviews, who can oversee medication management for older people and carers thus releasing valuable time for appropriate face to face GP consultations for other patients. It would contribute to patient safety if vulnerable patients and their carers had a named clinician and a simple process to access help and support. Having had a chat with my local pharmacist, who is private and independent as opposed to part of a retail chain, he explained that he has a database of all his vulnerable and older patients who can telephone him/his staff if they have any problems and he will take time to give the necessary advice and support needed.
From this study then, what do you think is it the biggest patient benefit that could come, and what difference will this make to patients?
I think the recognition of the unmet need. Addressing this unmet need. The websites and the journals will be updated for policymakers to access the latest evidence. It will hopefully result in improved patient safety, reduce hospital admissions and offer support to carers.
You mentioned public policy. How do you think public policy needs to change to support these older people with complex medication regimens?
Well, as a lay person I don’t really know. What I believe should happen is that the updated websites showing evidence and recommendations from the research, including the Francis Report, should be taken seriously. I don’t know whether it’s mandatory for politicians to use new evidence but for me it is common sense to be acting upon it to improve health care services and patient experience.
One of the things that annoyed me is that when I was doing some research with the West Midlands Collaboration for Leadership in Applied Health Research and Care (CLAHRC) at Birmingham University it was revealed that not all research goes into the public domain, so people aren’t aware of it. In some cases, this is acceptable, there may well be good reasons. However, what alarmed me was that apparently new research evidence of improved patient care and recommendations from that evidence doesn’t necessarily get initiated by NHS managers. This is a waste of research effort and taxpayers’ money
What else do you think can be done to support these older people on these complex medication regimens, I know you mentioned the increased support for their carer’s and making sure that their health is paramount as well but is there anything else you can think of?
It would be safer for patients to have continual reviews and monitoring of the number of medications that they take, including over-the-counter remedies. Evidence from focus groups that we’ve run show that older people do not necessarily want quantity of life, but prefer quality of life, so stopping medication that reduces quality of life has to be a patient’s informed choice. The risks of medicines interacting with each other ought to be looked at regularly and if necessary some of them reduced. But only with the patients understanding and the patients approval. Primary, secondary and community care professionals all prescribe medication to older people. We need to be improving communication and collaborative working in multidisciplinary teams, including community pharmacists. This is in the patient’s best interests so that no conflicting advice is given to them. I would absolutely like to see a social worker or a named worker that is responsible for monitoring the needs of carers and patients who manage their own complex medication regimes.
Given your experience on health research reviewing panels for Pharmacy Research UK, the NIHR and others, what do you think are the strengths of the MEMORABLE project?
The research team are embracing the voluntary and statutory groups, the diversity of the team involvement with gender and BME groups, AGE UK and dementia and Alzheimer’s charities. There is clear evidence of needing to address this huge issue and to recognise that elderly populations with cognitive impairments need to be supported. This research team has members who are experienced in projects developing medication management resources for informal carers of people with dementia, including ethnic minorities as well as developing plain English resources for over the counter medications purchased by patients. They have a wide range of expertise. That is very much a strength of this research proposal.
What do you see as the most important issue in Pharmacy Research at the moment?
Well, when I sit on a research application funding panel as a lay member, I look at patient benefit, patient outcomes and whether the research team have liaised with patients and the public to get their perspective. I look to see if PPI [Patient and Public Involvement] has been involved in the design and what evidence there is that this research is needed.
That is the way I see my role…. I have to broaden my perspective and not just come from my own experiences but how it could impact on a diverse section of the public. The important issues for pharmacy research I’m not too sure about, but certainly pharmacists, their changing role, their skill mix needs to be more varied. For instance we now have a pharmacy technician employed at my surgery who does all the medication reviews and hence, as mentioned already, contributes to giving doctors more valuable face to face clinical consultation time with other patients.
Pharmacy research needs to explore the wonderful new world of technology we are entering. The Internet of Things…. Cutting edge Technology, which of course has to embrace patient data security and safety. An Electronic Prescribing System is a good start.
Your views have been incredibly interesting to listen to Sylvia, a lot of them have been very similar to that of Ian Maidment who we also spoke to about this project. Thank you very much.
You’re very welcome, I’m very committed to a patient and public perspective in research and in all healthcare delivery. I have experienced and seen how crucial and effective it is. It is pivotal to the shaping of future patient centred health services.
