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Patient safety and children with long-term health conditions

4 Sep

by Sue Kirk, Professor of Family and Child Health

Juvenile diabetes patient with his mother

Increasing numbers of children and young people are living with a long-term health condition such as diabetes or asthma. Over the past 20 years we have also seen more children with complex healthcare needs being cared for in their own home rather than in hospital.  These changes have led to parents (and the children themselves) taking on roles and responsibilities that would have been unthinkable in the past. This includes monitoring their individual health, managing their own medication and treatment, using complex medical equipment such as ventilators, acting as care coordinators, and in some cases organising and managing home care teams.

Parents and young people don’t only manage these health conditions within the relatively controlled environment of the home. Children and young people go to school and college, take part in social activities with their peers and families, go on holiday and may spend time in hospices and other care settings. They may also receive services from a vast array of health, social care and voluntary sector organisations. This presents challenges for communication, both between professionals and between families and professionals, and consequently for care integration. This is worsened as young people transfer to adult services.

Surprisingly there has been little research that has examined patient safety for this marginalised group. We don’t know how families or health care professionals understand, monitor and manage safety in this complex situation or how safety could be promoted and improved.  This is what we intend to look at as part of the Safety in Marginalised Groups: Patients and Carers theme of the Greater Manchester PSTRC.

Placing ALL patients and carers at the heart of patient safety research: introducing our new theme on marginalised groups

23 Aug

by Caroline Sanders, Research Lead in Safety in Marginalised Groups: Patients and Carers

Inclusion_raised-hands_small_AdobeStock_69187814

In his 2013 review for improving patient safety, Don Berwick emphasised the importance of seeking out the voice of patients and carers, and ensuring they are ‘present, powerful and involved’ at all levels. This has been a major focus of our earlier research, our involvement and engagement work, and led to our priority setting partnership in conjunction with the James Lind Alliance in March 2017. This identified the number 1 question for future research is to understand ‘How can patient safety be assured for the most vulnerable in society?’. This recognises the widespread concerns and evidence showing that patients and carers who are already disadvantaged and marginalised, may also be at greater risk of harm within the healthcare system.  Additionally, we have not yet done enough to ensure we hear the voices and understand the experiences of marginalised groups to be able to develop appropriate and effective interventions to support patient safety for ALL patients and carers.

Our starting point for the new research that will evolve along with our further Patient and Public Involvement (PPI) work, is to acknowledge that people may be disadvantaged and marginalised by multiple factors such age, disability, ethnicity, sexuality, gender, and socio-economic disadvantage.  For example, we know that BME groups have poorer health outcomes, and poorer access and experiences of healthcare services. People may also be marginalised because of stigma and poor access to services for specific conditions (e.g. mental health problems); or they may be marginalised because of the circumstances or settings in which they live (e.g. living alone, caring for someone at home, living in a rural setting, in a care home or prison, being homeless).

In this theme, we will be working closely with other themes and our PPI contributors to focus on and understand safety risks and concerns for specific population and patient groups. For example, what are the particular challenges in relation to communication, which we know is considered by patients and carers to be a crucial foundation for safe care? What are the challenges for marginalised groups of patients in the ever-changing care context, where there are new responsibilities and health care practices expected as a part of enabling better self-management? We will co-design or adapt tools to support patient safety that will be tailored for such groups.  This may include use of mobile apps or other technologies, and we will also focus on the help and support that people might need to make sure they can use these, or enable appropriate alternatives. We know this means we need to be creative in reaching out to communities and groups who currently feel disempowered or hidden in relation to healthcare research and service provision. We are looking forward to this exciting opportunity to seek out some of the quietest and most hidden voices to ensure the most vulnerable can have better and safer care.

Please see our webpage or contact us for further information or to share any comments and suggestions.

My final article

28 Jul

by Max Scott

Part nine of the series The desperate fight to be heard, and supported, when living with the invisible struggles of Multimorbidity

Introduction to the blog series is here.

Max Scott_My final article

Well, this is, sadly, my final piece for Greater Manchester PSTRC, on my own personal experiences with Multimorbidity. I have enjoyed the experience of not only having a platform to vent my own frustration, but to hopefully interest, inform, and help others in a similar situation.

Ironically, the update that I do have since my last post is a perfect example of why I wrote these articles in the first place – it is the ultimate case of a patient not being listened to.

I have been in receipt of Disability Living Allowance (DLA) since my Pituitary surgery in 2005. Well, this year my DLA was changed to PIP (Personal Independence Payment). I didn’t expect much of a problem, as all the evidence and back up from medical professionals was there to be seen. However, it did take a week of putting a couple of hours in a day, with the help of my wife, to get the PIP form done. Naturally, that proved very stressful and tiring for someone like myself who has severe chronic fatigue. The form asked if I would give my permission for them to contact any medical professionals who had treated me, and I agreed to this.

Much to our surprise, I was sent for a PIP assessment, which basically consists of having somebody who has never met you before fire questions at you for an hour, and ask if you can raise your hands above your head, bend your knees, and touch the inside of your leg with the opposite foot. Then it is “Goodbye, you should hear from us in six to eight weeks”. Well, I did. I had failed. Apart from the emotional upset and anger it caused, that meant a large loss of income to me and my wife after receiving DLA unquestioned because all the proof was there for 12 years. The only change during that time is that my conditions have become steadily worse.

Why did this happen? Because they completely ignored the facts. Not opinions, facts. They made sure that I was “two points short” in their scoring system. My wife is my carer, but they said I didn’t need a carer. I have memory problems, they said I don’t have memory problems. I have cognitive dysfunction, they said I did not have cognitive dysfunction. My wife has to administer my medication as I get muddled and make mistakes, they said I sort my own medication out. I have aids in the bathroom, including a frame, a raised toilet seat, and a squatting stool, for severe problems that have been medically recorded. They said I did not need these aids. Not only all of this… but they did not contact any of my doctors or specialists, seemingly because they knew that they would back me up. We applied for a reconsideration; they once again ignored the facts and turned me down.

We have put in an appeal and sought the back-up of our local MP, and he was only too happy to help as he could see the decision was nonsense. We are now in the process of waiting for the date for this appeal, something made even more painful as we are also going to have to attend a coroner’s inquest into the passing of my dear Mother last December, and this is expected to take place between October and December.

In summing up, I can only say how sad I am that, during the process of my series of articles, nothing in the way of Multimorbidity services has happened, no progress has been made for the many sufferers of this life-changing affliction, and I cannot see anything changing in the near future. Marching down Whitehall to Downing Street, chanting and waving placards is not for us… most of us haven’t got the energy! But, eventually, somebody of influence needs to make a noise about this, and the only way for that to happen is to somehow voice our unhappiness and frustration as much as we can and to whom we can, until the term “Multimorbidity” is no longer met with bewildered looks from the vast majority of the population who have never heard of it.

In conclusion, I’d like to wish Greater Manchester PSTRC all the best in its future research and endeavours. To all who have read my articles and have a daily struggle with their health, thank you and I hope you find something that makes life that bit easier and more enjoyable. Perhaps that may even be in the form of a medical practitioner who… listens.

Why does PPI benefit research?

13 Jul

by Sally Giles, Research Fellow in Core PPI Research theme and Philip Hammond, PPI Coordinator

PPI blog post_July2017

Why do PPI?

“All organisations should seek out the patient and carer voice as an essential asset in monitoring the safety + quality of care” Berwick Review, July 2013

We believe that including the patient voice in our research makes it more meaningful and relevant to the real world.  We have experienced examples of when patient feedback has influenced our research.  As part of the Greater Manchester PSTRC we wanted to look at how PPI impacted on our research in an academic context.  To do this we had a look at the academic literature, firstly to find out why people involve members of the public in their research. We discovered that people who use health services can help to ensure that issues that are identified and prioritised are important to them and therefore to health care, public health and social care as a whole.  Public involvement can help to ensure that money and resources are not wasted on research that has little or no relevance and that being involved in research can help empower people living with a medical condition.  We used this as a basis to develop our own PPI structure within the Greater Manchester PSTRC.

The Research User Group (RUG)

The RUG started off as a group of 12 members of the public, who met every 6 weeks.  Each of the research themes within the Greater Manchester PSTRC were allocated 2 or 3 members to their theme.  A RUG evaluation highlighted that some researchers were heavily reliant on their aligned members for all projects within their theme.  It also highlighted that it was challenging to see how the RUG was having an impact on research, as this impact was mainly happening at project level.   Based on feedback of RUG members and in an attempt to widen involvement by bringing in more associate members of the public, a restructure to the RUG took place.  It was agreed that there should be a split between governance and project level PPI.  This new structure was implemented two years into the centre.

The restructure enabled us to focus more on project level PPI, and we have a number of examples of how PPI has benefitted the research on specific projects.  Some examples follow below:

1.   Multimorbidity Research Advisory Group (MRAG) was set up to involve patients and carers in the development of resources and new research projects for the Multimorbidity theme.  It consisted of 18 group members who provided feedback on research, shared ideas, helped to set research priorities and supported two applications for further funding.

2.   In the Interface & Informatics theme patients and public contributors have been involved in enhancing research by taking part in a number of  sessions aimed at investigating the relevance of an established patient portal for patients with long term conditions (PatientView) and identifying strategies for improvement. This group also commented on draft study protocols, designed and co-facilitated a larger workshop and helped to identify social media and patient associations as an additional recruitment strategy (resulting in 25% more recruits).

3.      In the Medication Safety theme members of the public have been involved in the recruitment of participants for focus groups, co-facilitation of focus groups and coding of transcripts using an existing framework.

4.      For the Core theme members of the public have helped develop the Primary Care Patient Measure of Safety (PC_PMOS) study.  They helped to develop the items to be included in the PC_PMOS and recruited patients in GP practices to complete the PC_PMOS, Patients were able to relate more easily to the PPI members than the research team, which helped to increase participation in the study

5.      In the GP theme there has been public and stakeholder involvement in the patient safety guide project via 3 different involvement groups with key stakeholders.

Thoughts for the future

Our advice to anyone wanting to develop a PPI structure within a large (or small) research centre is to plan carefully by starting with a clear strategy, but be willing to accept that this will constantly change as the needs of those involved evolve.  Involvement needs to continue to be an iterative process, people have different (and changing) needs and get involved for different reasons, and equally research studies have different aims and priorities which need to be addressed when planning involvement.  We see involvement as being broader than patients or members of the public.  Often the end users of our research have been health professionals and as such, our definitions of involvement and engagement have evolved to include all relevant stakeholders.

Community Pharmacy Patient Safety Collaborative: Safety Initiatives

14 Jun

Chui Cheung photo

My name is Chui Cheung, working as a community pharmacist in Wigan, Lancashire.  I joined the NIHR Greater Manchester PSTRC Community Pharmacy Patient Safety Collaborative Study with the University of Manchester in November 2015.  Looking back, it was curiosity that led to my participation and I was worried how I would handle the research projects.  Nevertheless, the title of patient safety attracted me to find out more.

Patient safety is at the centre of our everyday tasks whether we are pharmacists, technicians, dispensers, medicine counter assistants or other members of the team. Whatever we do in the course of our work, we must do it safely.

At the start of the first year project, there were 8 to 10 pharmacists with a range of different working backgrounds and age groups.  We attended a full day session every 4 to 6 weeks at the University.  We were relieved to discuss openly and share our experience on patient safety.  The aim was to build a safety case using our working environment and team resources.  My project centred on dispensing safety: ‘Are we dispensing safely?’ and later on was refined to a quantitative safety incident claim.

We were introduced to specific tools: Hierarchial Task Analysis (HTA), Failure Mode and Effect Analysis (FMEA), System Human Error Reduction & Production Approach (SHERPA) to help our analysis of the safety profile. Our team broke down the complex dispensing tasks into smaller working steps or processes systematically. On a practical application, the Proactive Risk Monitoring (PRIMO) questionnaire was helpful to use as a team to identify various patient safety risk factors.  We then made risk assessments of the dispensing processes through the SHERPA and used Plan, Do, Study, Act (PDSA) cycles to evaluate improvement.

The whole team began to monitor and record near misses and dispensing incidents on a more conscious level than before and made voluntary changes towards an open, no-blame working culture. The goal of safer dispensing became a number one priority all the times.  The team’s brainstorming revealed many common triggers or events of ‘the vulnerable moment’ during the dispensing processes.  Several checking procedures were used as checker reminders.

The pooled data of errors showed high times of errors, typical error categories and even the common medicines.  Individually, we were able to find out when and how we perform best and made aware of the pitfalls.  We discovered that we were prone to errors particularly when we were ‘expected’ to have ultra-quick dispensing.  Through a member’s suggestion and our dispenser’s effort, we now display a shop poster giving a summary of ‘the way we prepare your medicines’ and give customers opportunities to read through the additional copies whenever there is a queue forming.  It works really well and the feedback is positive too.  The team and customers seem happier.

In year 2 of the project, we came across analytical tools (Faulty Tree Analysis, Bowtie diagram) to look at our safety claim.  We continued to expand our safety interests and used a more sophisticated reporting form called  ‘Incident Investigation Form’ which covers error description, the factors causing the error, the risk category, course of the event and improvement plans.   We have since modified the form for in-house use.  The bundle of safety data showed how we had been dispensing safely or otherwise.  As a result, we implemented a couple of measures (such as safety shelf reminders, Top 20 common error medicines list) to help us improve on a regular basis.  The data is also useful in staff appraisal.

Moreover, we felt fortunate to have the ready-made patient safety data for Quality Payment application.  My experience in the patient safety collaborative has been overwhelmingly good and positive.  I wouldn’t have known about these analytical methods and thought about the improvement plans if I hadn’t been part of the study group.

I recommend that any pharmacy team who is interested should come along for a taster session to see if this is right for you.

Keep taking the tablets, part two – The medical practitioners side

25 Apr

by Max Scott

Part eight of the blog series ‘The desperate fight to be heard, and supported, when living with the invisible struggles of Multimorbidity’

Introduction to the blog series is here.

Max_Scott_Medication_Apr17

In part one of this blog looking at the complications of taking regular multiple medications, I described some of the problems faced by the patient, in this case, myself!  But, of course, it makes it very difficult for doctors and specialists to treat me for a specific condition when there are so many other things to be taken into account; trying to make sure that, in treating one condition, it does not aggravate another, and that any medications given to me do not interact in a negative, or at worst dangerous, way with anything else I am taking.

I make a point, before I see a specialist, either whom I have not seen before or who may need reminding, to type up a comprehensive list of all the medications I take, both regularly and intermittently, to hopefully make their task that little bit easier in knowing what they can and can’t prescribe me, mainly in terms of what drug might interact with another in any way, and the vast majority are very grateful for this (NOT ALL!), and tell me so. I like to help them to help me whenever I can, and I make this clear; I feel that is showing equal commitment.

There are a few who virtually ignore my notes, not taking into account the effort and care I put into preparing in this way. There are certain doctors that I see, who purely try to do their best for me, while realising my situation makes me a “complex” patient, and therefore they try their hardest to “tailor” my treatment so it does not compromise anything else, and I fully appreciate the difficult job they have in doing this; there are others who seem untroubled by the situation and just “get on with it” as it were, hopefully knowing that how they will treat me will have no bearing on anything else.

Then – very recently – I had the perfect example of the flip side of things, when not only does the practitioner, who I had only met on two previous occasions, not appreciate my list, but positively rolls it up and batters me around the head with it! (Not literally, but they may as well have…). My wife and I explained that my overall level of health and fatigue had, if anything, taken rather a knock since I last saw him. His reaction was to take one look at my long list of medications and say “Well, if I was on these, I wouldn’t even be able to do my job”, insinuating that my condition was caused BECAUSE I take so many tablets. A rude and belittling verbal attack from somebody who immediately dismissed my whole medical history in one uninformed and disinterested put-down.  Any medical practitioner doing their job properly by taking a genuine interest in their patient, would NEVER make such a flippant remark – each of my medications has been given to me for a reason; reasons which this person neither had the time or inclination to go into and yes – the list IS long – and so is the list of conditions they are given to me for – that is what MULTIMORBIDITY is!

But, all the while, there is no kind of ANY facility, service or specialist for, or indeed seemingly with much knowledge of, multimorbidity in my area, and more than likely many other areas of the UK; this does nobody – neither doctor or patient – any favours at all.

How can we improve safe communication and co-ordination of care between primary and secondary care?

19 Apr

Part four in the James Lind Alliance Primary Care Patient Safety Priority Setting Partnership blog series: Part One, Part Two, Part Three

by John Taylor, patient attendee of the JLA Primary Care Patient Safety PSP final workshop

JLA PSP Top 10_Number 3Question 1 for me is, have there been any high grade research papers published already on this subject? If yes, then are there meta-analyses showing useable findings, and how old are these and have the findings been overtaken by newer recommendations?

Acting as Devil’s Advocate I would ask ‘who has posed this topic’ and ‘what evidence has been the basis for it’ and ‘how reliable or high grade is the evidence?’

As a  patient with multimorbidity, I personally feel that communications and coordination of care between primary care in its broadest sense and secondary care are often multi-centred and compartmentalised by ‘treatment episodes’ only indirectly linked, and even then through less than state of the art IT systems which may or may not be multi-site interoperable, which makes communication often slow, occasionally lost in space or paper chases and definitely not entirely in the best interest of good patient care.

So, how could improvements which would benefit the whole system be researched and put into practice?

Should lessons be learned from commercial users of communication systems who successfully run large scale businesses and care for the wants and needs of customers in ways which fulfil demand and generate repeat business, i.e. satisfied end users, and also learn from systems which have failed in their purpose due to poor design or uneconomic cost over runs or just failing to understand the needs of the users. Best practice should produce the designed outcomes consistently and be adaptable to cope with new needs as they are identified and designed to do this with minimum disruption and cost, there are many Healthcare Providers who have produced local workarounds which suit the needs of patients and providers with safe communications and care, NHS England, NHS Digital or NIHR RfPB (National Institute for Health Research Research for Patient Benefit) might be the vector to investigate how these develop and how well they might scale up.

I am constantly amazed and delighted at how, for example, Amazon handle their returns communications and customer care, they will respond to a ring back request within seconds, take the details, issue a printable label, arrange pick up and confirm by email then refund or replace as soon as the item is received at their depot. If Amazon and others can do this why is it so difficult for primary, secondary and, dare I say it, social care to learn how to communicate safely, rapidly and without arguing over ownership between themselves and patients, so that information flows freely, accurately and safely through the system, benefiting patients and providers alike.

Accurate and timely information is the key to good outcomes and thus improvements need to be constantly sought and implemented, carrying on doing what we have always done is not an option.