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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.

NIHR Greater Manchester PSTRC Meet the Team – Rebecca Hays

24 Oct

The sixth in our NIHR Greater Manchester PSTRC ‘Meet the Team’ series introduces Rebecca Hays, Research Associate in Multimorbidity theme

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Read my notes…please?

20 Sep

by Max Scott

Part seven 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.

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In my last blog, called “Keep taking the tablets: part one”, I tried to explain some of the difficulties I have faced in having to take multiple medications. Part Two will be based on the difficulties faced by medical professionals when having to treat such a complex patient as myself, without any training in multimorbidity it seems.

But for now, here is a perfect example, and my latest experience, of the main theme of all my blogs: Getting others to listen to, and trust what you say as the patient.

A few months ago, I was in hospital for an operation on my leg. It was a hospital that I had not been to before, that specialised in the treatment I was due to have. The staff were excellent. One doctor, seeing the comprehensive notes I had typed up, as usual before I have a hospital admission, said they ‘were excellent’ and ‘so helpful’. It really lifted my morale because I had been laid up in there for over a week. But, as we know from my previous posts, it only takes one. That person arrived in the form of a physiotherapist. Here is an excerpt of the complaint letter I wrote to the hospital:

“It was the afternoon, sometime beyond 2pm I think, and I had just drifted off to sleep…when one of the physios arrived at my bedside. She wanted me to get up and do the “stair test”. I explained that I had just gone off to sleep. “Oh I’ll come back in a while, when you’ve had your downtime”, I believe she said. I explained to her that it was not like that; [because of my other conditions] I was likely to be asleep for around two hours, and that when I woke up, my mind would be very disorientated for quite a while. She did not accept this, clearly had no interest in my overall health, was argumentative, dismissive, insulting, and sarcastic.

The physio was clearly put out: “Well what do you do in the afternoon at home if you want to go to the toilet?” (Immediately, I knew she was trying to catch me out; neither pleasant or professional) I told her “I am in such a deep sleep in the afternoon that wouldn’t happen”. As I realised that I was, in fact, being challenged, I thought back to the support of the Doctor I mentioned earlier. I said that the Doctor had spoken to me, had read my details, and had made clear that I would be given time to get well enough to go home. I told her that he had said it would be possibly Monday but probably Tuesday that I would be going home, she did a dismissive laugh and said “Oh no, it doesn’t work like that…we hardly ever listen to the doctors anyway”. I was really shocked by that last comment. “Who was this Doctor, anyway?”, she continued, looking at me with more and more disdain as I lay there feeling awful in my hospital bed because my brain was desperately telling me I needed to sleep. I told her I couldn’t remember his name. Around this stage she went away to talk to somebody (no idea who, but there was certainly no apology when she got back). Having returned, she said that the porter would come for me around five o’clock to take me and a physio to do the stair test. This was then my turn to make clear that it didn’t work like that. I told her that I would try my best, but I may still be too woozy to do the test. “Well he will just have to go away again, won’t he?”, she snapped. I actually remarked to her at this stage that she was getting cross with me. She somehow, of course, denied it. I pointed to the notes I had typed that had been such a help to many during my stay, she briefly picked them up, had a quick look…but did not read them. I have been underlining the word “read”, because it makes such a difference if my notes are actually read properly; I have worked hard on them, so as to explain all. What really did it for me, though, was one of the next comments. “Some physios would be even stricter than me” she said, or words to that effect. I’d naturally had enough by then, feeling appalling, having a nurse with me trying to check my health, and having my integrity brought into question. I verbally let out my despair to her, saying the following: “What good would it be for a strict physio, or anybody, to demand that I try to walk up and down a set of stairs while part of my brain is wishing to close down?”. I would think that at least half the ward heard me, and she left soon after. I am not a person who goes around picking faults where my care is concerned, but I knew that the way I was treated and spoken to on that day in your ward, so soon after surgery, feeling so unwell – I was also being treated for low oxygen levels at that stage – should in no way go unreported.”

The “incident” is now being investigated. The fact that the physiotherapist had no interest in reading my medical notes speaks for itself…a multimorbidity patient has to be treated as a whole, otherwise there could be danger to the patient. I believe this MUST be enforced, as soon as possible.

The title of the re-introduction to my blog posts in a Greater Manchester PSTRC newsletter was “Trust Me, I’m a Patient!”. It seems this is still not happening, at least in a great many cases, and of course this can be pivotal to the overall health of those patients by their wishes going unheeded. My experience is a perfect example. As a result, I felt very unwell because my sleep had been interrupted, I was upset and angry at being treated like a hypochondriac, and, of particular relevance to these blogs, it felt soul destroying – not only do we have no specialist multimorbidity care, but even when one takes the trouble to write information to guide the medical professionals, some, like the example above, cannot be bothered to read it.

I have since been treated for a relapse of my clinical depression. Who knows what part in that was played by the physiotherapists attitude…and, what’s more, how many other patients with similar problems experience the same kind of thing, but, unlike me, do not get the chance to talk about, and share, their experiences, forcing them to perhaps either bottle it up, or give up even mentioning their invisible conditions, all this to the detriment of their health…just because there are medical professionals out there who will not believe, trust…

and LISTEN?

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

20 Jul

by Jonathan Stokes, PhD student in Multimorbidity theme

Jonny Stokes_July15 blog on paper

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).

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

1 Apr

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

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.