NIHR Greater Manchester PSTRC Meet the Team – Sally Giles

12 May

The seventh in our NIHR Greater Manchester PSTRC ‘Meet the Team’ series introduces Sally Giles, Research Fellow in our Core PPI research theme

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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.

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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.

NIHR Greater Manchester PSTRC Meet the Team – Paolo Fraccaro

10 Apr

The sixth in our NIHR Greater Manchester PSTRC ‘Meet the Team’ series introduces Paolo Fraccaro, Research Associate and former NIHR Greater Manchester PSTRC PhD student

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What makes a ‘good’ GP?

5 Apr

by Golda Gibson, member of the Greater Manchester PSTRC Research User Group

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My guess is that for every person there will be a slightly different answer. We all want them to be knowledgeable, to know when something might be going wrong with us and to act decisively thus protecting us from further harm. Where we may differ will be in our personal relationship with our GP, what is perhaps important for one will not necessarily be the same for another. Within us we all have what are known as ‘trigger points’, areas controlled by our emotions, past memories good and bad of how we were related to in a given situation, the ‘building blocks’ of our emotional development that affect how we behave in many circumstances and those momentous moments when we can actually act objectively. You will all be aware of that instantaneous moment when you meet someone for the first time – and dislike them!!! How can that be? It is not THAT person that is the problem, it is our response to past negative experiences which that person has now triggered. This can happen between family, friends, colleagues, the person in the street and yes, with your doctor, he/she too is just another human being with all the ‘baggage’ we all carry around with us each day.  They and we, can be reactive, defensive, introverted, extroverted. They and we, can have home problems, family problems, car problems, even late night problems, but what we want in our exchanges is for our healthcare professional (and us) to be able to ‘place’ those problems where they belong.

When we go to the GP or any healthcare professional for that matter we are asking to be ‘made better’, we are unable to be ‘objective’ about ourselves. This childlike position is vulnerable and it is in this very situation when, if we are not received in a positive away the relationship can falter. What we are looking for is respect for our lack of knowledge, concern for our anxieties, interest in our suffering and empathic understanding of how we feel and why.

Are there such GPs about? Probably not that many but I am very lucky to have found one.

Four years ago when I first became ill my diagnoses floored me. ME!!! – (not M.E.) the one who exercised regularly, ate healthily, kept control over my weight and was still working in her 71st year in a very exacting job, I had become chronically ill, my body had let me down and all that NHS propaganda about the need for a healthy lifestyle hadn’t worked. To make matters even worse, twelve days after my diagnoses my husband had a stroke. In less than two weeks I had become a patient and a carer, my career was over and my whole world had changed irretrievably.

I met my GP not at the point of diagnoses but shortly after when treatment was being started and I was given an urgent appointment. His first words to me on entering his room were …’I’m so sorry’. Those were the first kind words I’d had said to me and they penetrated through this shocked state I was in. Without being fully aware of it I had made a mental note that day that this was the doctor I was going to deal with, this was a ‘feeling’ man, someone who without a word from me had recognised my anguish and made it his own, our ’emotional baggage’ had not got in the way of our first exchange, we were accepting of each other, I was vulnerable, sad, totally overwhelmed and angry, add to that my  ‘feisty’ personality and my anger could have destroyed the moment but his warmth towards me quietened me.  

During that first eighteen months he always made a 4-6 week follow-up appointment for me before I left his surgery, even though there were times I felt that perhaps I didn’t need it. He became my advocate, guiding me, advising me, listening to my concerns and always ready to respond. When treatment with one clinician or another wasn’t up to standard he responded. He never judged me, never made me feel I was a ‘difficult patient’ although I’m sure others might and have!  I ask questions and I expect answers and I know when I was being ‘talked down to’ with rubbish. My GP is never patronising, always and without exception he is pleased to see me, he likes me and I can tell. When I enter his office, time is mine, there is no clock saying ‘time up’, I am made to feel that I have as much time as I need.

As time went on my own condition worsened and also that of my husband. Through numerous ‘urgent’ moments my doctor was always there, guiding, advising and supporting. When I couldn’t get appointments to see him he gave me a ‘hotline’ that allowed me to make direct contact with him should I need it and a promise that he would always ‘fit me in’ should an appointment be necessary. He also connected me to a new innovative community caring system where I am able to make contact with a Nurse Practitioner directly on the day I need it if I became unwell and found it difficult to care for my husband.

My husband who was not initially with him but with another practice, is not very mobile, it is difficult for me to get him to the surgery, impossible at his previous surgery as they were on a main road next to traffic lights with no parking area whatsoever. My doctor has said to me more than once he would call and see ‘H’ at home if it would be easier for me! I have also known him just to phone me to ask how I am when he had not seen me for a while. Very rare qualities.

Some months ago I received an email from one of the doctor ‘comics’ that are delivered to the practices around the country and also electronically. In it an article asked if there was a deserving GP in your practice that was worthy of being nominated for a national champion award for the care of R.A patients. This was my chance to get my wonderful doctor recognised and acknowledged for his exceptional care to me and all his patients. I then had to set up a plan whereby I enlisted the help of the Assistant Practice Manager who in turn sought help from one of the other GPs in the practice to fill in a part of the form I couldn’t due to not being privy to that particular information, and then it was my turn to get my chance (only one) to write about this wonderful man. I knew it had to be written with a passion that conveyed just who he is and what he is to his patients. As I said, I was only going to get this one chance and they had only given me 400 words in which to do it!! There would be many practices and patients nationally who would be submitting their own nominee and there were only ten championship awards to be had in the whole of the country, my writing had to ‘stand out’, it had to make the reader ‘feel’ as I did – AND WE MANAGED IT – HE GOT THE AWARD!!! The ceremony took place at the House of Commons on the 2nd November and the awards were given by the Prime Minister Mrs Theresa May.

Afterwards he wrote me the most beautiful thank you letter in which he told me that the personal qualities I bestow upon him are really a reflection of myself. Doesn’t that just tell you what kind of a man he is. I am extremely fortunate and blessed to have such a doctor. In this crazy 21st century NHS, with reductions and shortages in just about everything, when talking (the same story) to just one more person makes you want to tear your hair out and you begin feeling as though it is you who are the problem. When you hear yourself getting sharp and snappy on the phone to one or other department and no one is actually listening and even if they listen and promise that what you’re asking for will get done – it then doesn’t get acted upon. When I reach that rock bottom moment I have my GP.

Thinking outside of the box: presenting patient safety issues creatively

30 Mar

by Sally Giles, Research Fellow in PPI Research and Jackie Nightingale, member of the Greater Manchester PSTRC Research User Group

In 2016 Sally Giles (Research Fellow, Core Theme) took part in the Academy of Creative Minds programme which brought together a dynamic, disparate group of artists, from composers to circus performers, directors to writers. These artists shared their ‘tricks of the trade’ with health researchers, to help them build confidence and expertise in using the creative arts to convey research messages in a more powerful and meaningful way.

As part of the programme Sally was required to work with one or more of the artists to produce a creative way of conveying a research message of her choice.  Sally worked with a circus performer to develop a way of highlighting communication issues in general practice and how this can affect patient safety.  As part of this process Jackie Nightingale (a member of the Greater Manchester PSTRC Research User Group) was asked to get involved in developing this performance.  Jackie played a starring role as the main patient in the scene.  Their full performance was a major part of the NHS R+D North West Annual Research Conference (video above).

Both Jackie and Sally thoroughly enjoyed the experience and would recommend the course to anyone who would like the opportunity to think outside of the box when trying to get research messages across in an enjoyable and innovative way.

Greater Manchester PSTRC Dissemination Event: A Lay Delegate’s Perspective

28 Mar

by Moira Lyons, member of the NIHR Greater Manchester PSTRC Research User Group (RUG)

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As a Core Member of the Greater Manchester Primary Care Patient Safety Translational Research Centre (GM PSTRC)’s Research User Group (RUG), I was delighted to be invited to attend the Centre’s recent flagship dissemination event, “Safer Primary Care: A shared responsibility for system-wide learning”, which was held over two days at the Manchester Conference Centre. For me, the inclusion of members of the public in the delegate list (and not purely as spectators – several RUG members took part in the delivery of workshops, alongside researchers) underlined the genuine commitment to patient and public involvement apparent in every aspect of the Centre’s work.

It was very exciting to see the evidence of how much had been achieved over the last five years and to hear something of the plans for the new PSTRC! The atmosphere was one of expectation and enthusiasm and an inextinguishable optimism for the future. One theme resonated throughout – communication and sharing data. The more we can make use of the data available to us and share the information we have with all parties involved, the better it will be for everybody and the easier it will be to progress all aspects of patient safety. And what better exemplification of that than this event!

The speakers were relevant, informative and entertaining, the organisation was faultlessly streamlined – even the catering was of a high standard, plentiful and varied. A balance was struck between opportunities to listen and learn and opportunities to discuss and ask questions. The poster session was a lively event, as presenters eagerly approached delegates who showed an interest in their work. The diversity of research within a common theme was impressive, as was the dynamic exchange of information that drew everybody in. For example, I had a very interesting discussion with two GPs about the differences in diagnosing practice between the UK and other parts of the European community; a Dutch GP will routinely consider the option of whether or not there is “a need to treat” – a relevant concept in view of the current concern about overprescribing. It was also good to hear a GP decry the use of the “one appointment one issue” policy that has been adopted in some general practices.

The Event Dinner at the Principal Hotel, on the evening of the first day, was well attended. The after-dinner speech, delivered by Professor Richard Roberts, was a highlight. Even though, as he pointed out, he was all that stood between diners and dessert, his audience was captivated by a superb combination of thought provoking comment and insightful reflection, informed by personal experience, as he considered the future of primary care.

The two days passed all too quickly.