Patient Safety: Blame the System?

by Gavin Daker-White, Research Fellow, Multimorbidity theme, NIHR Greater Manchester PSTRC, The University of Manchester

“What we’ve got here is failure to communicate” (Cool Hand Luke, 1967, Warner Bros/Seven Arts)

This is the last of 3 blogs that discusses the results of a review of qualitative studies of patient safety in primary care as undertaken by researchers at the NIHR Greater Manchester PSTRC and NUI Galway. The review, published in August 2015 (and available here) examined 48 studies grouped into 5 topic areas:

1. Patients’ perspectives around safety (8 articles)
2. Staff perspectives on safety (14 articles)
3. Medication safety (10 articles)
4. Organisational or management issues (7 articles)
5. Care transitions between primary care and hospitals (9 articles)

The story of patient safety contained in the articles reads essentially as a clash between imperfect and infallible human beings on the one hand, and standardised medical systems on the other. In the final part of the series of blogs that discuss the results of this review we examine the findings concerning the organisation and delivery of care.

Of the 48 papers included in the review, 7 were focused on systems issues and it was noteworthy that most were ethnographic in nature; that is they relied on observation and interviews by researchers examining health services settings during normal working hours. Most of these studies had staff as participants, as opposed to patients. Whereas the studies concerned with staff perceptions of patient safety also included much concerning the organisation of care, such findings were not evident in the studies where patients were interviewed. For patients, the only relevant finding was that patients appeared unaware of normal clinical protocols or procedures, against which they would have been able to gauge and judge their own experiences, e.g. of waiting to be informed of test results.

One group of findings concerned the characteristics of computer systems that could variously increase or reduce the potential for errors according to features of design or quality of stored information. In other instances it was simply that staff had not been trained properly to use new equipment or software. Procedural standardisation of all kinds could seemingly work for or against safety in different circumstances. Thus both EHRs and clinical protocols had the capacity to create an illusion or even a false sense of security. New protocols had the capacity to create additional workloads on already overworked staff and could have knock on effects that weren’t considered prior to implementation. These findings point to a need to better investigate whether a ‘one size fits all’ approach is preferable (in safety terms) as opposed to one based around the uniqueness of individual and ‘complex’ patients.

A systems approach was preeminent in the nine articles that reported findings from studies about ‘handoff’ or ‘handover’ processes between hospitals and primary care. The main problems included patients being discharged from hospital with insufficient information or medical supplies (e.g. drugs or bandages) and the vulnerable characteristics of some patients. In the same way that patients were ignorant about how processes work in primary care, GPs were perceived to view hospitals as a “kind of black box” (Russ et al., 2009) and might be uncertain about how or whether communication between care providers takes place (Arora et al., 2010).

       Across the 48 studies, the following aspects of health systems were seen to compromise or threaten patient safety in primary care:

•        Dispersed or insufficient patient information
•        Byzantine organizational structures
•            Drugs and care not transferable between primary care and hospitals
•        Non compatible systems between sectors
•        Budgetary constraints
•        Perceived inflexibility and irrelevance of guidelines (e.g. in multimorbidity)

The findings of the studies pointed to the following ways of improving health systems in terms of patient safety:

• ·         Improved medical records
•        Effective communication between primary and secondary care
•        Better resources
•        Reliable systems
•        Timely accessibility and updatability of information
•        Standardization and improvements in knowledge, regulations, reporting and processes

References

Arora VM, Prochaska ML, Farnan JM, D’Arcy MJt, Schwanz KJ, et al. (2010) Problems after discharge and understanding of communication with their primary care physicians among hospitalized seniors: a mixed methods study. J Hosp Med 5: 385-391.

Russ AL, Zillich AJ, McManus MS, Doebbeling BN, Saleem JJ (2009) A human factors investigation of medication alerts: barriers to prescriber decision-making and clinical workflow. AMIA Annu Symp Proc 2009: 548-552.

Patient Safety: Blame the Doctor?

by Gavin Daker-White, Research Fellow, Multimorbidity theme, NIHR Greater Manchester PSTRC, University of Manchester

“Physician, heal thyself” (Luke, 4:23)

This is the second of 3 blogs that discusses the results of a review of qualitative studies of patient safety in primary care as undertaken by researchers at the NIHR Greater Manchester PSTRC and NUI Galway. The review, published in August 2015 (and available here) examined 48 studies grouped into 5 topic areas:

1. Patients’ perspectives around safety (8 articles)
2. Staff perspectives on safety (14 articles)
3. Medication safety (10 articles)
4. Organisational or management issues (7 articles)
5. Care transitions between primary care and hospitals (9 articles)

 The findings of the review were seen to boil down to those that blamed patients for safety failures, those that blamed doctors and those which explained safety failures by shortfalls in clinical systems or the organisation of care. This blog looks at the role of health service staff in patient safety in primary care. ‘Staff’ includes doctors, nurses or other health workers. Two of the studies we included in our review were focused on the role of practice receptionists, who often have a key role in patient safety through communicating with patients and dealing with repeat prescriptions. Administrative staff are also key to patient safety in primary care.

As was noted in Part One of this series of blogs, an important component of “feeling safe” relates to trust in care providers and the quality of inter-personal communication during interactions with health service staff. In the group of 8 studies that were concerned with patients’ perceptions, 2 were concerned principally with the consequences of real harms experienced by study participants. The results highlighted the role of past experiences in health seeking behaviour and showed how apparently trivial insults could spiral into more serious harm within a breakdown in the clinical relationship. These issues could be ameliorated for some people by training (of both staff and patients) concerning effective communication in clinical encounters.

Fourteen of the 48 articles we reviewed were focused on staff perspectives on patient safety. These studies were located in several different countries (USA, UK , Netherlands, Canada, Denmark, Germany  and Australia) and thus the kinds of processes and factors identified can be considered broadly relevant in western medical contexts. For staff, the main issues in patient safety concerned the characteristics or behaviour of staff or patients, doctor-patient communication and professional roles and responsibilities. Again, the main value of the synthesis in this group of papers appeared to be throwing light on those instances where the findings of different studies contradicted each other. For health service staff, these instances related to clinical autonomy, responsibility and emotional engagement with patients. For example, listening to patients was considered important so as not to miss vital information but it might threaten safety if the information given was perceived as irrelevant or distracting from the main issues at hand.

One commonly identified feature of clinical work in primary care was a perceived unwillingness to follow protocols, with GPs preferring to variously follow gut instincts or “do their own thing” (Elder et al., 2006). However, for health service staff the bulk of their concerns related to systems issues and the organisation of care, which is the subject of the concluding blog in this series. For staff, an important aspect related to the need for effective teamwork to promote safety within a context where staff can be held personally responsible for their actions.

One issue put forward by GPs as contributing to safety failures reflected the stressful nature of the job and the kind of work/life balance apparently necessary to operate “safely”. So far as the particularities of clinical and diagnostic work are concerned the dangers of false assumptions and explanations arrived at too hurriedly were both identified as threats to patient safety. The dangers in instantaneous judgements, perhaps based on stereotypes of presenting patients, was also identified as an issue in the ten medication studies. As in the patient studies, effective communication was considered essential, but potentially problematic given competing agendas and pressures on time and resources. There were also problems for GPs in managing rare drugs prescribed by other specialists, perhaps for conditions that were at the limits of their competence to manage (Rahmner et al., 2010).

Taking all of the studies into account, staff had the potential to compromise safety in the following ways:

• Communication mediated by receptionists
• Deference on the part of patients can impact effective communication
• Poorly performing GPs
• Lack of face-to-face contact between health workers
• Ad hoc approaches

 Other findings pointed to the ways in which staff can help promote safety:

• Create a feeling of safety
• Understand patients’ circumstances, clinical history and needs
• Training in doctor-patient communication
• Share knowledge and training with colleagues
• Teamwork / promote a safety learning culture
• Open, blame free and effective communication between staff

 On the face of it, the above findings suggest that engendering patient safety in primary care is something that takes time. However, time is often seen to be at a premium in primary care. Further, the relationship between some of the issues we have identified needs further investigation. For example, are some GPs “poorly performing” because of stress or burnout, or due to deficiencies in training or clinical practice? The main point to note is that effective communication between patients and health workers and between different health workers themselves appear as the most important factors. Often, it seems as though the time available for consultations or other communication in health services is challenged by the way that services are set up, organised or run. These considerations form the subject of next week’s blog, which will be the final post in this series.

References

Elder NC, Graham D, Brandt E, Dovey S, Phillips R, et al. (2006) The Testing Process in Family Medicine: Problems, Solutions and Barriers as Seen by Physicians and Their Staff: A study of the American Academy of Family Physicians’ National Research Network. Journal of Patient Safety 2: 25-32.

Rahmner PB, Gustafsson LL, Holmstrom I, Rosenqvist U, Tomson G (2010) Whose job is it anyway? Swedish general practitioners’ perception of their responsibility for the patient’s drug list. Ann Fam Med 8: 40-46.

Hearing without Listening: Part Two

by Max Scott, Patient

• Part four of the blog series “The desperate fight to be heard, and supported, when living with the invisible struggles of Multimorbidity”
• Introduction to blog series here

In the days and weeks following my Pituitary surgery, I began to read up on other patients’ experiences, who’d had similar surgery.  I remember reading one comment from a patient, who said “once you’ve had the surgery and are on your replacement therapy medications, the doctors are never far away from you”.  When I read that, my heart sank a little. I wasn’t sure if I wanted that.  I wanted to lead as normal a life as possible, and not have a medical team holding my hand every step of the way. But I needn’t have worried as that was not what I experienced!

Despite having multiple health conditions (my Medic Alert card makes depressing reading), some of which have completely changed the way I’m able to live my life, I usually have to make the first move in getting checked out. Some of the comments that I’ve had to endure are quite unbelievable!  Here are just a few. My own GP, upon me asking to have a particular check-up: “You don’t want to be making a career out of having tests”. To say I was gobsmacked was an understatement, as well as very upset and insulted. He is, by nature a gentle man, and I can only think that such an out of character outburst was “inspired” by costing concerns, but the effect it had was devastating. It is a very dangerous attitude to take with a patient. I wrote to the surgery to make my feelings known. The most I received in return was a response stating that “he is sorry if he upset you”. This is very different from saying “I’m sorry for getting it wrong”. The end result is that I avoided going to my GP for a long while after, even when I felt I needed to, and even now, I have lost confidence in asking him for any specific examinations. That I had to experience such rudeness in the first place was appalling. A perfect example of “Hearing without listening”.

I’ll leave you with a taster for my next blog; another comment said to me during an appointment, but not with my GP this time. “Are you worried about feeling well”?             

Patient Safety: Blame the Patient?

by Gavin Daker-White, Research Fellow, NIHR Greater Manchester PSTRC, The University of Manchester

“Cause and effect are never divided between two people”
(Max Frisch, I’m Not Stiller)

According to the World Health Organisation, “Patient Safety” can be defined as the “reduction of risk of unnecessary harm associated with healthcare to an acceptable minimum.” This is the first of 3 blogs that discuss the results of a review of qualitative studies of patient safety in primary care as undertaken by researchers at the NIHR Greater Manchester PSTRC and NUI Galway. The review, published in August 2015 (and available here) examined 48 reports of studies grouped into 5 topic areas:

1. Patients’ perspectives around safety (8 articles)
2. Staff perspectives on safety (14 articles)
3. Medication safety (10 articles)
4. Organisational or management issues (7 articles)
5. Care transitions between primary care and hospitals (9 articles)

The findings of the review were seen to boil down to those that blamed patients for safety failures, those that blamed doctors and those which explained safety failures by shortfalls in clinical systems or the organisation of care. This blog looks at the role of patients in their own safety.

From the first of the 8 published studies concerned with patients’ perceptions of patient safety, it was noted how “trivial insults could eventually lead to more serious problems” (Kuzel et al., 2004). Thus, in another study the authors were explicitly concerned with the kinds of actions or processes that could be seen to maximise the impact of harm once an error had occurred (Elder et al. 2005). For example, if a patient became angry following an encounter with a health professional who refused to refer them on to a specialist, that might affect trust in doctors or future use of services.

Technology is increasingly a feature of health care. A study concerned with patient preferences regarding the notification of test results found that “privacy” and “assured confidentiality” were important concerns which could lead to suspicions around the use of new technologies (Baldwin et al., 2005). Similarly, another study showed how a kind of blind faith in Electronic Health Records (EHRs) could represent a safety risk given the awareness that “patient information in the EHR was scattered, incomplete, or inaccurate” (Baran et al., 2011).

One message that derived from this group of studies was that when patients had more experience of health services they were better equipped to identify potential risks and take steps to avoid or reduce harm. In this context, patient safety appeared as a ‘feeling’ engendered through successful relationships and encounters with health professionals.

In the 14 studies concerned with the perspectives of health service staff, the characteristics or behaviour of patients appeared as important factors seen to impact on safety. These factors also appeared important in the 10 studies focused on medication errors. Both groups of findings pointed to the difficulties encountered in consultations with patients with multiple health conditions (so-called ‘multimorbidity’) or problems related to hearing, comprehension and memory. So far as medications were concerned, some patient’s characteristics were seen to limit the likelihood of adherence to drug regimens and also created challenges for receptionists in understanding older patients’ prescription requests (Hesselgreaves et al., 2009).

In sum, the findings suggested that the following characteristics or behaviours of patients appear as threats to patient safety in primary care:

• Disadvantages (physical, educational, level of comprehension and understanding)
• Complex symptoms
• Problematic presentation
• Lack of health literacy and self-management skills
• Social circumstances (e.g. living alone)

By extension, individual patients could promote their own safety by becoming more actively involved in their own care, by taking more responsibility for their own care, by becoming better informed about their health conditions and skilled in the self-management of their symptoms. This was especially evident in research that had looked at safety around hospital discharge. However, the findings around becoming more active in health care encounters in other groups of studies (e.g. medications) were sometimes contradictory which suggests the need for further research about what works in this context. It was also clear that patients can help minimize the risks in health care by being adaptable in response to system requirements.

There is a tension evident in the findings concerning the safety ‘risks’ associated with patients, however. For example, somebody who faces disadvantages, complex symptoms or lacks social support might find it harder to manage their conditions or become more actively involved in their own care. These are issues we are exploring in ongoing research within the Multimorbidity research theme of the NIHR Greater Manchester PSTRC. In one study we are following people over time to learn about threats to safety and what patients might be able to do about them (“MAXIMUM”). In a video study for the website healthtalk.org we will explore the health care dilemmas faced by people with multiple health conditions and how they cope with health conditions in different ways.

The findings of our review can be used to inform patients more generally about how to enhance their safety in healthcare. Of course some patient characteristics that can be seen to affect safety (e.g. being cognitively impaired or living in particular social or economic circumstances) are less easy for people to do anything about themselves. However, this points to situations or circumstances in which it could be beneficial to make use of advocates or carers for maintaining safety vigilance. Alternatively, instances where staff or services need to monitor cases or processes with extra detail or care are highlighted.

The influences of health care staff on patient safety will form the next blog in this 3-part series.

References

Baldwin D, Quintela J, Duclos C, Staton E, Pace W (2005) Patient preferences for notification of normal laboratory test results: A report from the ASIPS Collaborative. BMC Family Practice 6: 1-7.

Baran SD, Lapin JA, Beasley JW, Smith PD, Karsh B-T (2011) Identifying Hazards in Primary Care: The Elderly Patient’s Perspective. Proceedings of the Human Factors and Ergonomics Society Annual Meeting 55: 1130-1134.

Elder NC, Jacobson CJ, Zink T, Hasse L (2005) How experiencing preventable medical problems changed patients’ interactions with primary health care. Ann Fam Med 3: 537-544.

Hesselgreaves H, Lough M, Power A (2009) The perceptions of reception staff in general practice about the factors influencing specific medication errors. Educ Prim Care 20: 21-27.

Kuzel AJ, Woolf SH, Gilchrist VJ, Engel JD, LaVeist TA, et al. (2004) Patient reports of preventable problems and harms in primary health care. Ann Fam Med 2: 333-340.

Tsang C, Majeed A, Aylin P (2012) Consultations with general practitioners on patient safety measures based on routinely collected data in primary care. JRSM Short Rep 3: 5.

Case management is not the be-all and end-all of ‘integrated care’

by Jonathan Stokes, PhD student in Multimorbidity theme

The major health burden in any rich country (and increasingly poorer countries as well) is long-term conditions, e.g. asthma, diabetes, heart disease.

As people live longer, they tend to accumulate multiple long-term conditions over their lifetime, known as multimorbidity. These patients often require care from many parts of the health and social care system, use multiple medications, and their care is generally more complex and expensive to manage. These pressures have been further exacerbated by the 2008 economic crisis and subsequent austerity measures.

Better ‘integrated care’ is a common response from policy-makers, to achieve better outcomes for patients, and in a more cost-effective manner. Integrated care is a complicated concept, and it can be delivered at multiple levels of the health system, in the ‘background’ (e.g. integrated health records, pooled funding), or at the point of ‘service delivery’ (at the point of contact with the patient).

Case management for ‘at risk’ patients in primary care is an extremely popular way of ‘integrating’ service delivery. It involves identifying patients at increased risk of emergency admissions to hospital, and assigning them a specific case manager or case management team to tailor and co-ordinate their care (with an individual assessment, care plan, and regular review).

In the NHS, case management of the top 2% of highest risk patients is part of the current GP contract. Under the ‘Unplanned admissions directed enhanced services (DES)’, practices receive extra payments for signing up to these services.

Despite probably being the main form of integrated care being implemented in the NHS and around the world (looking at the NHS specifically, we previously found a clear dominance of case management being implemented as the core aspect of ‘integrated care’ in Clinical Commissioning Groups), with the aim of cost-saving and achieving better outcomes for patients, the evidence for this intervention is unclear.

We conducted a systematic review of the evidence generated to date. We used a statistical technique, called ‘meta-analysis’, to put together the findings of all of the studies we found. This technique increases statistical power (increasing precision and our confidence in the findings), and provides an assessment of all the high quality evidence available globally. For that reason, it’s often referred to as the gold-standard form of evidence in medicine.

We looked at effectiveness across a number of outcomes: health (patients’ assessment of their health, as well as mortality), costs and cost-effectiveness (total costs of care, as well as the use of specific services such as GPs, social workers, and hospitals care), and patient satisfaction.

Exploring data across 36 studies, we found that case management of at-risk patients in primary care showed no significant effect on most of the outcomes we looked at. The exceptions were self-assessed health status (which may improve slightly in the short-term, but with few long term benefits), and patient satisfaction (which improved a small amount in both the short and longer term).

We found little evidence of effectiveness of a very popular method of delivering ‘integrated care’.

Managing those high-risk patients is also important, and while the intervention analysed showed limited benefit, there was no harm shown. Therefore, we also tried to pick out some key learning opportunities for policy-makers to try and improve the interventions delivered in the meantime (for example, we found there may be slight benefits of using a multidisciplinary team to case manage; slightly more effect in a country with low initial strength of primary care; and there may be benefits when a social worker is involved).

Policy-makers may need to broaden their thinking about methods to improve care for those with multiple conditions. As others have pointed out, targeting only the highest risk patients puts limits on what can be achieved.

As enthusiasm for integrated care grows through the Five Year Forward View and the Vanguard programme, methods of achieving service improvement at scale need urgent evaluation.

With limited effectiveness shown for the main aims of the case management intervention, particularly no effect in reducing hospital admissions and total cost of care, for policy-makers to incentivise practices to implement case management appears counter-productive to relieving system pressures.

The full article can be found on PLoS ONE, titled: ‘Effectiveness of case management for ‘at risk’ patients in primary care: A systematic review and meta-analysis’ (DOI: 10.1371/journal.pone.0132340).

Hearing without Listening: Part 1

by Max Scott

• Part three of the blog series “The desperate fight to be heard, and supported, when living with the invisible struggles of Multimorbidity”
• Introduction to blog series here

I should have recognised the early warning signs. The GP that told me the news that I had a Pituitary Tumour, admitted to me “I only put you in for that brain scan to stop you coming to me worrying about your headaches”.

The Endocrinologist who I was subsequently referred to, carried on with this trend. He seemed more put out by the fact my tumour had been discovered in this way by the GP’s referral, rather than the normal procedure, which would have been that I would be firstly referred to him by the GP to investigate my headaches, then I would undergo weeks of blood tests, eventually leading up to an MRI scan. There my wife and I were, worried by the diagnosis and in need of information regarding the options for treatment, and here was a man who was, instead, showing indignation that he felt “normal procedures had not been followed”.  

Following my surgery to remove the tumour, which involved also removing most of the gland itself, the “Doctor-Patient” relationship between my Endo and I was to deteriorate further as time went on. I was discovering that the post-op “after effects” were greater than I had been warned that they could be. He was having none of it. As far as he was concerned, my blood tests were ok, so I was ok. This was purely because I was taking the right amount of replacement hormones (It is a well-known fact that, although these meds help, they cannot fully replicate the functions of the natural ones). There were several offensive and upsetting comments made to me. “What do you mean, condition?” (i.e. “You’re fine!”). Worse was to come. Asking him about my chronic fatigue, and need to sleep every afternoon, for which he had no answer, his clearly bored response was “I already spend more time with you than my other patients”, and “I’ve discussed this with you Ad Nauseam”. My wife could see how upset I was getting by such an attitude, and became tearful. “Do you know what it feels like, sitting here trying to tell you how I feel?” I said. “Do you know what it feels like sitting here having to hear it?” he replied.

All of this was having a demoralising effect on not only me, but my wife, who had to witness, daily, how poorly I had become. This man was meant to be our first line of support. It soon dawned on us that he was anything but.  

The challenges of integrated care

by Jonathan Stokes, PhD student in Multimorbidity theme

At the end of last month I was back in my undergrad University town of Edinburgh, for the ‘15^th International Conference on Integrated Care’.

All in all, it was a really interesting conference. I did, however, come across some frustrations, and they in fact reflect some of my frustrations with the topic area of ‘integrated care’ as a whole…

First of all, the question, ‘what is integrated care?’ is very much glossed over. It’s far from a clear concept, but instead of addressing this issue properly, the majority seem to push ahead with an outcome-oriented definition (e.g. ‘integrated care’ is the production of the ‘feeling of integration’ in the end user – the use of which I question to local policy-makers trying to put this into practice), and a ‘bottom-up’ approach (i.e. letting local areas come up with their own examples of ‘integrating care’).

While ‘bottom-up’, or ‘grassroots’ approaches are beautiful buzz-words, it’s hard to see how these highly-localised approaches, frequently small projects, and disease-focused (ironically, given that ‘integrated care’ is partly in response to the growing number of people with multimorbidity – many conditions – for whom the disease-specific systems we already have cause added problems and safety concerns) can result in anything but a highly fragmented ‘integrated care’ approach, at least without the proper top-down oversight and co-ordination.

The apparent results of this approach, at least the majority in the NHS context, is an over-reliance on ‘case management’ – identifying a small proportion of the population at ‘high-risk’ and assigning a team/individual to look after their care co-ordination – as the embodiment of integrated care. This approach fits clearly with the outcome-oriented definition, but evidence for its effectiveness beyond an extremely small increase in patient satisfaction is lacking (I have a systematic review on the way in due course), and only a tiny proportion of the population even potentially benefit.

For true population-level effects, and the system-wide changes clearly needed, we need to embrace a systems-approach to integrated care, in my opinion. This was the subject of the poster I presented (see below), which shows the framework of a health system (white boxes) and outlines some practical examples of ‘integrated care’ that can occur at each level (grey boxes).

Through the ‘systems lens’, integrated care can be thought of as any improvement to the ‘interconnections’ between elements or levels of the system. Interconnections in a system can be physical, but more frequently are information flows, perhaps explaining the difficulty researchers have had in pinning down the concept. For this reason, integration occurring at the ‘foundation level’ of the system (financing, governance & organisation, resource management) is vital. Practical things like linked IT systems between your GP, hospitals, social care etc. Most people I explain about the lack of this connection in the majority of the NHS (with the notable exception of Salford more recently), can’t believe the lack of this linkage! That you could be admitted to hospital, and that they have no idea of your previous medical history/allergies etc., all contained on your GP record, is really outrageous in our information age.

These, though, are the kind of changes that are extremely difficult to make at a local level, from the ‘bottom-up’. They require investment, co-ordination, and usually legislation to implement. They also occur further away from the patient interaction than service delivery interventions, so don’t fit quite as neatly with the outcome-oriented definition. Additionally, the NHS has had past failures in implementing, for instance, a unified IT system nationally, despite investing billions of pounds in the attempt.

I must say, it was refreshing at the end to hear from the Scottish government who spoke about “allowing the ‘bottom-up’ innovation using the heavy hammer of top-down legislation”, having just launched an extremely comprehensive integrated care plan.

Perhaps, then, devolution may play a part in being better able to implement these system changes, perhaps we’ll see in Greater Manchester from April 2016…

“Why do they do this to me?” – The inner cry of a child whose two crimes were to be gentle and poorly

by Max Scott

• Part 2 of blog series “The desperate fight to be heard, and supported, when living with the invisible struggles of Multimorbidity”
• Introduction to blog series available here

It would not be what he hoped it would be

Mums eyes misted over as she watched the pale, frail looking boy set off to the neighbours a few doors away for his lift to school. Thin, white, bony legs exposed to the winter cold from below his short uniform trousers, he was not really strong enough to return to school, and my mother was fully aware of this. But what could she do? Her son had missed so much education. That boy, of course, was me.

Once at school, I spent my time in the classroom struggling to catch up with the work missed in my absence, and my time in the playground struggling to deal with the pain and misery of being punched and kicked by the other kids who found me an easy target, with my weak limbs and gentle disposition.

As a severely asthmatic child from around the age of one, I never knew what it was like to be well, or to have any continuity with schooling or building friendships. I was unable to develop the social or survival skills that could have made this early period of my life that little bit easier.

So this, in a way, could have been useful preparation for having to deal with the challenges that face me now. Except that now, those challenges are rather different. Back then, I just wanted to be left alone by those who made my life more difficult. Now, I just want to be listened to by those who could make my life that bit easier. I was unable to achieve the former. Now, as an adult, armed with more experience and the ability to string a few words together, I strive to achieve the latter.

My future posts will try to give an insight into the gradual and shocking realisation that my health issues were multiplying, to the extent that they were taking over my life, that they were mostly invisible to the outside world, and that, remarkably, on top of my having to come to terms with this…my doctors seemed to be responding with scepticism.

Into the unknown, alone

by Max Scott

• Part 1 of the blog series “The desperate fight to be heard, and supported, when living with the invisible struggles of Multimorbidity”
• Introduction to blog series available here

I was full of apprehension as I walked into the GP surgery waiting room – a message on my answer phone the previous day had told me to contact my doctor asap. “I think you’ll feel better when you get in there”; the receptionist said. My heart suddenly felt a little less heavy. Did she know something that I didn’t? I felt bewildered, but now at least I had a bit of hope.

The buzzer on the wall announced that it was time for me to face the facts. I entered the Dr’s room. “I believe you have the results from my brain scan”, I said. “Have I?”, he remarked. My heart began to sink again. “Let me have a look….hmmm…I don’t know how to access these results…I’ll have to ask for help”. He then rang for the receptionist to show him how to open the file. As I realised he had obviously not seen the results after all, all optimism in me evaporated. “Do I have cancer” I said, staring at the floor. “No, you do not have cancer. You have a large adenoma on your Pituitary Gland”. “What is that when it’s at home?” I remarked, hiding my fear with a touch of flippancy. “It’s a lump…a tumour. You poor man. Just when you should be living your life to the full. I thought the headaches you were getting were the result of over indulgence, and I put you in for the scan to prove it to you”.

I had been rather taken aback when the doctor had suddenly announced, at my previous appointment, that he was putting me in for a brain scan, but my main thought at that time was that at least he was being thorough, and the fact that I was having a scan made it no more or less likely that there was a problem. But, from that day onwards, my life was to change forever…

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

by Rebecca Hays, Research Associate, Multimorbidity theme

One of our research themes at the Greater Manchester PSTRC focuses on patient safety in primary care for people who have two or more long-term conditions at the same time. This is known as multimorbidity. We believe that people with multiple health conditions may be more likely to experience issues with their physical and psychological safety because they:

• Use healthcare services frequently
• Receive care from a range providers
• Need to manage multiple medications and treatments at the same time, and
• Face difficult decisions about their healthcare priorities.

We aim to develop a better understanding of people’s experiences of primary and community care when they have multiple health conditions, find out when a patient’s safety may be at risk and how risk could be reduced.

This series of blog posts by Max Scott provides insight into what it’s like to be diagnosed with and manage multiple health conditions. He shares some of the most significant moments in his healthcare and brings to life the concerns and problems some patients face.

Max is in his 50s but no longer able to work. He lives with his wife, in South-East England, who he also refers to as his “carer”, “guide”, and “memory”. Max’s story starts almost 10 years ago…

click here to read part one of Max’s story

click here to read part two of Max’s story

click here to read part three of Max’s story

click here to read part four of Max’s story

click here to read part five of Max’s story

click here to read part six of Max’s story

click here to read part seven of Max’s story

click here to read part eight of Max’s story