Tag Archives: multimorbidity

The Foundations Framework for Developing and Reporting New Models of Care for Multimorbidity

15 Nov

by Jonathan Stokes, Research Associate in the Manchester Centre for Health Economics

J Stokes_Foundations Framework diagram

With colleagues at the Universities of Bristol, Glasgow and Dundee, we have published a framework aimed at improving care for patients with multimorbidity (two or more long-term conditions).

Long-term conditions and multimorbidity are a global health priority. Patients with multimorbidity receive more fragmented care and have worse health outcomes, and health systems struggle to address their needs. We need new ways of delivering care to address this.

To date, there has been limited success at delivering care that improves outcomes for these patients. One major problem is that there is no agreement on how to describe care for patients with multimorbidity. This makes it difficult for researchers to talk about their work, and to explain these new ways of delivering care to patients and policy makers. Our framework offers a starting point for addressing this issue.

Our framework describes care for multimorbidity in terms of the foundations:

  •  the theory on which it is based
  • ·         the target population (‘multimorbidity’ is a vague term, so we need to define the group carefully, e.g. a patient with diabetes and hypertension might have very different care needs than a patient with dementia and depression)
  • the elements of care implemented to deliver the model.

We categorised 3 elements of care: (1) the clinical focus (e.g. a focus on mental health), (2) how care was organised (e.g. offering extended appointment times for those who have multimorbidity), and (3) what was needed to support care (e.g. changing the IT system to better share electronic records between primary and secondary care).

We used our framework to look at current approaches to care for multimorbid patients. We found:

  • Care for multimorbidity is mostly based on the well-known Chronic Care Model (CCM). This was designed for people with single diseases, and may not be fit for purpose for patients with multimorbidity.
  • Much care is focussed on elderly or high-risk patients, although there are actually more people aged under 65 with multimorbidity. We need to make sure that models don’t neglect the needs of younger patients, or those who are at lower risk, who might have most to gain in preventing future health problems.
  • We need to look more at the needs of low-income populations (where multimorbidity is known to be more common), and those with mental health problems (multimorbid patients with a mental health issue are at increased risk for worse health outcomes).
  • There is an emphasis on self-management, but patients with multimorbidity frequently have barriers to self-managing their diseases.
  • The emphasis on case management (intensive individual management of high-risk patients) should take into account the evidence that while patient satisfaction can be improved, cost and self-assessed health are not significantly affected.

Health systems have only recently begun to implement new models of care for multimorbidity, with limited evidence of success. Careful design and reporting can help develop evidence more rapidly in this important area. We hope our framework can encourage better research which is urgently needed to improve care for those who use it most.

This free to read article can be found at the following link: http://www.annfammed.org/content/15/6/570.full

Stokes J, Man M-S, Guthrie B, Mercer SW, Salisbury C, Bower P. The Foundations Framework for Developing and Reporting New Models of Care for Multimorbidity. The Annals of Family Medicine. 2017;15(6):570-7.

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.

Keep taking the tablets: part one

11 Apr

by Max Scott

Part six 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

MaxScottMedsBox_photo_blogApr16

Regular (daily) medications:

VENTOLIN EVOHALER 10 micrograms (µg) as needed

SYMBICORT TURBOHALER 200µg, two puff morning and night

LEVOTHYROXINE TABLETS 50 µg, one every morning

LEVOTHYROXINE TABLETS 25µg, one every morning

OMEPRAZOLE TABLETS 20 milligrams (mg), one morning and night

TESTOSTERONE GEL 50 mg, one sachet each morning

FLUOXETINE 40mg, by way of two 20mg tablets every morning

PRAVASTATIN TABLETS, 20mg, one every night

GENOTROPHIN GROWTH HORMONE INJECTIONS, 5.3mg, one every night

PREGABALIN CAPSULES 300mg, one at night (for sleep disorders)

PREGABALIN CAPSULES 150mg, one in the morning (for meralgia paresthetica and back pain)

CLONAZEPAM TABLETS, 0.5mg, progressing to 1mg tablet and to be gradually raised to 2mg, at night

FOLIC ACID TABLETS 5mg, one at night


Other (sometimes taken) medicines:

MICOLETTE MICRO-ENEMAS, approx once a week

PARACETAMOL TABLETS 500mg, one-two when needed

CO CODAMOL TABLETS 8/500mg, one-two when needed

CODEINE TABLETS 30mg, one-two when needed

TRAMADOL TABLETS 50mg, rarely

DIAZEPAM TABLETS 5mg, when needed

ANUSOL SUPPOSITORIES, when needed (for haemorrhoids)

Various creams, intermittently, not regularly


So far in this series, I have concentrated on the many experiences and difficulties of living with multimorbidity, and somehow making sure that you are listened to, believed, and respected by medical professionals. By the very nature of the condition, professionals will be faced with a patient who is complex and will, more than likely, have conditions which are invisible to the eye, making trust that much more important.  I will continue on this theme in the future, but for this article I am going to focus more on an inevitable price to pay for having multimorbidity – and that is having to take multiple medications.

I am presently on thirteen regular daily medications for my varied health issues, and I have to take several more intermittently when the need arises. Let me explain some of the problems this can cause. Firstly, for me, the patient. Then (in part two) with the GPs and Consultants.

The Patient

The first of my present medications I ever took were my asthma inhalers, and I have been on these for longer than I can remember. Taking them became a way of life many years ago. Later, gastritis led to me taking Omeprazole. These were joined by the odd Diazepam here and there for anxiety, and sometimes I needed to use a nasal spray for rhinitis. All fairly straightforward at this stage. Then came my Pituitary surgery in 2005. Along with my life in general, that is when taking medications became more complex. I have included a list of my medications above but, to clarify, the ones I take as a result of my tumour removal/hypopituitarism are Levothyroxine 50 and 25 mg, Testosterone gel, and nightly injections of Genotrophin Growth Hormone. Hydrocortisone tablets have been needed on occasion, but this remains an ambiguity of extreme curiousness, which I shall raise again later in this blog. Such things as foot operations; pain from trapped nerves, osteoarthritis, slipped discs etc; and complex sleep disorders have all added to the list.

It’s not just about the amount of medications that I am now on, but the amount of tablets I have to take, when, and how. Remember, anyone who has seen any of my other blogs on here, I have short term memory loss, plus cognitive and executive disorders, which make it all the more easy to make mistakes. I have had to get various “Daily Pill Boxes”, example photo also included here, which should give you an idea of the sheer amount.

I mentioned a moment ago about making mistakes. Well, the drug companies do not make things any easier by manufacturing capsule shells, containing different medications, that look so similar. For example, two of my medications – one for my gastritis, the other an anticonvulsant medication also used for pain and sleep disorders – are both contained in a small, totally white capsule. How ridiculous, and potentially hazardous, is this?  This may be one thing when still in their original boxes (which, incidentally, chop and change their designs and colours so that you never build up a familiarity with them, often seemingly copying the packaging of other drug brands) but when separated into my “daily pill box” can become a nightmare…I have to put my strongest reading glasses on, to find some tiny dark lettering on one of them, and that is the only way I can tell these two, radically different, medications apart. So, basically, I am now on so many medications that just taking the tablets, at the right time, and making sure they are the right ones, has become an art-form all unto itself!

A final point in this part one, and it is a very strange one. One medication that I have not had to take following the Pituitary surgery has been Hydrocortisone, needed when there is a deficiency of ACHC, the hormone that stimulates the production of hydrocortisone by the Adrenal Gland. This hormone often does need to be replaced with patients who have had Pituitary surgery, and, as so much of the after-effects of my Pituitary surgery has been severe, life-changing chronic fatigue, it would have been logical to expect me to be deficient in this. But not so. That is until recently, when I had a series of blood samples taken later in the day than usual: after mid-day, when I am really beginning to flounder as my body and mind wind down towards my afternoon sleep.  THIS time, my hydrocortisone level was found to be very low, and an emergency phone call came that I must start taking hydrocortisone tablets IMMEDIATELY. Ahh, an answer to a problem, I thought. But no. A couple of weeks later, I had another series of tests, which astonishingly showed that I do NOT need to take Hydrocortisone after all. The last test was taken earlier in the morning than the other one. Relevant? Well, all I can say is that there are times like this when I begin to feel like a human guinea-pig!

Hearing without Listening: Part Three

30 Oct

by Max Scott, Patient

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

Max_Scott_Medic_Alert_Card_2015_BLOG5

As I remarked in my previous blog (Hearing Without Listening, Part Two) the effects of careless communication from Doctor to patient can be devastating to a patient’s morale and confidence. This is a point which I wish to make very strongly. Having already been shocked by my GP’s comments regarding my request to have tests, I was later to have another jolt.

It is hardly surprising, that trying to cope with adapting a lifestyle around so many differing conditions (see copy of my MedicAlert card above), eventually led to severe clinical depression. After having to endure yet more psychologically harmful opposition (“what good do you think talking about it will do on top of the tablets I’ve given you?” said a certain GP who should have known better), I was referred to a couple of Primary Care Mental Health Specialists (“the girls”, as I call them to my family) who I’ve been seeing fortnightly for the past couple of years, and have been invaluable in their support, even if it is just sometimes for me to offload. However, during one appointment, relatively early on in my sessions with them, came this question: “Does the thought of being well worry you?”. Well… no words can describe my state of incredulity upon hearing this. I was so upset by this question that I went away and wrote a letter to them before my next appointment, expressing my feelings. During our next meeting, it was explained to me that such questions are standard practice. But here is the problem for those with Multimorbidity: standard practice that question might be – if dealing purely with a mental health issue. But to somebody whose life has been changed forever by a multitude of conditions that often combine to make life hell, and impact massively on its quality, such a question becomes an affront. The person who said it to me has been part of a two-person team who have supported me as best as they can, and who would never have meant to upset or offend – but, by putting a question to me that was only linked to one of my health conditions, leaving aside the others, the damage was done.

Hearing without Listening: Part Two

18 Aug

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

Ears_Listen_Max Scott blog

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”?             

Hearing without Listening: Part 1

11 May

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

Max Scott_Hearing without listening part 1_cropped photo

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

16 Apr

by Jonathan Stokes, PhD student in Multimorbidity theme

JStokes_April15blog_poster pic

At the end of last month I was back in my undergrad University town of Edinburgh, for the ‘15th 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