Friday, 28 December 2012

Patient Opinion and giving feedback

I had the best Christmas present this year (on the 27th December!), when I visited the orthotist at Dorset County Hospital. I was given a neck brace, which signifies the first tentative steps towards getting back on the water - a very exciting prospect for a sailor land-locked by doctors!

Whilst I have experienced very frustrating appointments from the NHS, I have also been privileged to experience first hand a brilliant NHS too. And I feel very strongly that, when appropriate, positive feedback should be given.

Sunday, 23 December 2012

There is more than just the self in self-management

Self-management is about managing your own long-term health condition. But the word "self" can be a bit misleading. I self-manage myself and find it really empowering to have that control, but my learning and self-management has been facilitated by a number of people: the tutors on my EPP course, my counsellors, my parents, my doctors, my physio and other healthcare professionals I meet. It has to be said that some of the aforementioned facilitate my self-management more than others, but I am certainly no island in my self-management.

Sunday, 16 December 2012

"What is the best thing about being a patient?" - testing out appreciative enquiry

This post is my attempt to
be a Jolly Christmas Patient!
'Tis the season to be jolly . . . and so I shall be jolly, but about what?!

I recently attended a conference about public engagement and learnt about appreciative enquiry - an engagement technique that focuses on the positives. More about the technique can be found here. I am all for positivity and think that positive themes are key for good engagement, otherwise the whole affair can be rather depressing. Whilst the conference was aimed at a wider audience than just health, they did give a healthcare example for appreciative enquiry: "what is the best thing about being a patient?" Now, I am pretty keen to answer questions, and normally have a response for most questions thrown my way, but this one stumped me! I have been mulling this over over the last few days (assisted by mulled wine!) and have come up with more suggestions than I thought I would have . . .

Saturday, 15 December 2012

Goals . . .

I guess everyone starts giving a few non-committal thoughts to the subject of goals around this time of year, with New Year's resolutions coming up. But I am thinking about it much more this year, having listened to Angela Coulter's webex on shared decision making, having seen this posted on twitter by Leeds & York NHS PFT (@leedsandyorkpft) . . .

Thursday, 13 December 2012

Shared Decision Making webex with Angela Coulter

Today I joined the shared decision making webex hosted by NHS South of England and presented by Angela Coulter. It was good to hear the background and key principles of a term that is the real NHS buzz-word of the day I hear so often. Coulter made some excellent points and raised some questions for me which I wanted to explore further in this post.

Angela Coulter (The King's Fund)
She described shared decision making (SDM) as making "informed and personally relevant decisions", which for me captures the two most important components - information and individuals! SDM requires information, but the decisions I make with my doctor could very well be totally different from the decisions made by the next patient even if we are both presented with the same information. "Personally relevant" also encapsulates the wider social and emotional context in which disease takes place.

Monday, 10 December 2012

Don't we all self-manage? Active vs Passive self-management

After giving a talk to some nursing students, one student approached me and said that he had a long-term health condition (although he had never considered it as one, before the talk) which he thought he self-managed. This got me thinking about active and passive self-managing.

Although not obvious, self-management is really just common sense practical advice. Lots of us self-manage all the time in an informal way without doing EPP style courses. I self-managed before I did the course. But I was passively self-managing: I didn't think about it; it wasn't necessarily of the most benefit to me (mentally and physically); and it certainly was not optimal.

Thursday, 6 December 2012

#IntegratedCare discussions with The King's Fund and National Voices

This morning I joined the Twitter conversation around integrated care that was hosted by The King's Fund and National Voices. There were a lot of interesting points made, which I wanted to capture here.
Integrated care had been a hot discussion topic for some time now, and whilst it was very encouraging to hear the issues raised, the next step is for some change! I agree with Nick Goodwin above, and sense there is a lot of old ground being covered, stating the obvious.

Tuesday, 4 December 2012

The Seven Deadly Sins . . . of a long-term health condition

I listened to an interesting discussion on Radio 4 Women's Hour with Jenny Murray about the seven deadly sins and their relevance to modern society. Having been created in the fifth century by a male Pope, they were questioning how much they still apply to us today. As they listed the seven sins, I found myself thinking that they all had particular relevance to me, living with long term health conditions.

The Seven Deadly Sins and the Four Last Things (Hieronymous Bosch)

Saturday, 1 December 2012

All I want for Christmas . . .

Having spent an afternoon making Christmas cards, and had the annual "what do you want for Christmas?" question from a number of relatives, I have been thinking a lot about Christmas and what it means when you live with a long-term health condition.
So what do I want for Christmas? A new pair of legs that work, some eyes that can always read, a head that doesn't hurt, an arm that doesn't decide to stop working intermittently and a mind that isn't paralysed by depression for starters . . . . Before I even get onto Doctors that see me and medications that work . . .

Monday, 26 November 2012

WEGO Nominations!



Really proud to have been nominated for the Blog category! I can't believe how much my blog has taken off in the last 12 months, and how much I have enjoyed doing it - I have just passed 3,000 hits as well, so really excited about continuing The Patient Patient in 2013 ... As long as I am continue to be a patient, there is plenty of inspiration for these posts!

Thank you!

Saturday, 24 November 2012

What to learn?

Source: The Guardian
Recently, I have been given the opportunity to review the syllabus and course specification for a pharmacy Masters course in the UK. A opportunity I feel very privileged to have had, but a task that was far from easy . . .

As I scoured through the specification, the objectives and outcomes, I was struck by the enormous amount of ground work and background the students were given in their first year, to build upon in subsequent years. Thinking back to my experience at medical school (albeit a course at a University with an unusually strong focus on academic science), I recall so much detailed biochemistry, pharmacology and anatomy, much of which was not needed directly during my brief stint of clinical training, but which provided the building blocks for the later learning.

Forgotten Conditions (2020Health Report)

As a patient with a number of rare long term health conditions, I can get quite frustrated with all the coverage and focus that the big common conditions get . . . Which was why I enjoyed reading the Forgotten Conditions: misdiagnosed and unsupported, how patients are being let down report by 2020Health so much, and identified with so much of its content!

The report summarised what sounded like a fascinating round table event that I wish has been to! Acknowledging that people with rare conditions are often "neglected and overlooked", it looked closer at the issues this particular cohort of patients face, as well as recommendations to address those issues. There is a risk that these patients will continue to "languish in the difficult-to-deal-with box", because of the complexities of these rare conditions, not to mention the additional issues caused by their low prevalence.

1940 and 2012: Spot the Difference . . .

I have already raved about the BBC documentary-drama about the invention of the Paralympics (BBC Best of Men), but one of the most memorable clips from that programme has flashed back at me today having read a story in The Times about the young people wasting away in old people's homes (Martin Barrow).

In the 1940's, the only option for young men left disabled by the war was residential homes - I shudder at the recollection of a father suggesting his young son who can not have been older than 20 take up a place in a residential home, and commenting that the one he can in mind "had a good view of the lawn". Before Ludwig Guttmann, there were no alternatives. But yet, seventy years on, many young people are still faced with the prospect of old people's homes.

Thursday, 15 November 2012

NHS Acronym Buster - UPDATED!

Acronyms are apparently a necessary evil within the NHS, with so many complex departments, structures and roles, before the medical jargon even begins!
I always find it refreshing going to meetings as a patient representative and asking every few minutes what that TLA (three letter acronym) means - only to have quite senior NHS come up to me at the end say "Thank God you asked, I had no idea what it was either!!" This website of NHS acronyms is going straight onto my favourites ... and possibly, on the favourites of quite a few NHS staff too . . .

NHS Confederation Acronym Buster

Brilliantly useful - I can't believe how many acronyms there are (and this list doesn't even include many of the medical ones...)

And, there is now an Acronym Buster App too!


The King's Fund Time to Think Differently

The King's Fund have recently launched a new campaign - Time to Think Differently - which is all about change in health and social care. Following #kfthink on Twitter, it is clearly an important topic, that is generating lots of interest! What I like most about the Time to Think Differently campaign is the fantastic collection of infographics they are produced, which you can view here. In particular, the infographic below is one the best I have seen summing up the relationship between LTCs and mental health:

Source: The King's Fund



It is so simple, but gets the message out loud and clear! I have eluded to the 'psychological and emotional side effects' of long-term conditions before, and much of this blog discusses the mental challenges long-term conditions present. Whilst my doctors have been attentive to my physical condition, my MRI scan results and my drug treatments, my mental health has been completed side-lined. I strongly believe that in order to successfully treat my physical conditions, my mental health needs to be addressed as well. It is really encouraging to see the reality of living with long-term conditions recognised at such a level - I hope it can be translated into more holistic care pathways.

This is, of course, just one angle of the diagram: some people have unrelated physical and mental health conditions; whilst others have physical conditions caused by their mental health conditions. Either way, I do hope awareness of the substantial overlap (however caused) will lead to better care in the long-run.

Incidentally, I am fast becoming a big fan of infographics - especially when I see such effective ones like this one!

Monday, 12 November 2012

Self-care vs. self-management

So, it's self-care week this week! I get the feeling that many people use the terms self-care and self-management quite interchangeably. I didn't really think about this until I listened to Medical Matters podcast on Radio 4, where a GP was giving self-care a hard time. Reading a lot of the literature produced for this week as well I have begun to realise that there are important distinctions between the two, and that they are far from indistinguishable.

Saturday, 10 November 2012

UCL Lunch Hour Lectures

I have recently discovered the UCL Lunch-hour Lectures - 40 minutes of fascination over lunch! Last week I listened to Nick Barber (nick.barber.org) talk about medicines - "Can't take, won't take - why patients don't take their medicines", and it was the best lunch I have had for a while!

In addition to being fascinating, Nick presented it in such an engaging way - using my favourite tool, patient story and personalising it! For example, he opened by rephrasing the title from patients to "we", since we are all patients, so brought it home and made it relevant!

Thursday, 1 November 2012

Further evidence of the power of empathy

The Sunday Times Style ran a short article this week about the power of empathy - only a paragraph hidden among other articles but very interesting none-the-less. Apparently the more empathetic your doctor the less complications of your condition you are likely to have. The study wasn't directly referenced (and I am yet tofind it on-line) but was on 20,000 Italians with diabetes. The patients with highly empathetic doctors had about two-thirds of the complications of those who's doctors scored lower for empathy. The rating of empathy may have incorporated other factors but the headline of the study is certainly interesting and suggests the power of empathy.

What excites me about this new trend in patient experience research is the relation of experience/emotions to hard and fast clinical outcomes - the things people measure and base commissioning and clinical decisions on! Instead of being discounted as "soft", the experience of patients is finally being seen as something that is note just a nice bonus but central to the medical aims of improving people's health.

Language: going back to basics

There are so many unanswered questions in the area of medicine, long-term condition management, the mind-body connection and patient experience, but what is standing in the way of us finding those answers?

In addition to the obvious challenges in these area, the language that we use might be complicating the process.

Do we even have the alphabet we need to start to write the questions that we should be asking?!

For example, in the English language we have plenty of words to describe boredom, but we don't have a word for "doing the right thing".

Neuro-linguistic programming (NLP) explores the power of our language on our thoughts and behaviours, something that cognitive behavioural therapy (CBT) also touches on.

If in our personal lives we are happy to explore the role of language, then why not extend that to our professional lives and examine the language we use when posing the big questions in field? Have we got the right building blocks and foundations to go on to answer these questions - the alphabet?! This may sound very hypothetical and abstract but I really do think having a slightly different perspective on things can give a fresh outlook an day just help!

Wednesday, 31 October 2012

LT6 Questionnaire

I came across the LT6 Questionnaire during some work looking at how to identify people with LTC who are ready to embrace self-management and 'ready, willing and able' to change. I wasn't sure what it was like as a tool, so decided to fill it in myself to see what it was like in practice!
According to the DH, it measures changes in knowledge, beliefs and perceptions which are necessary to sustain over time. The questionnaire can be read here: Pages 35-36 of this DH QIPP Long Term Conditions document.
My answers are at the end of this post, but this is what I thought of the questionnaire:

  • It is good in that it identifies the key issues through the six questions: person-centred; shared decision making; information provision, management support; and integrated care
  • It possibly ignores the role of third sector organisations in filling in the gaps of the healthcare professionals (for example, information from disease specific charities and self-management skills from EPP courses). 
  • Having the open-ended questions at the end can help people expand where they need to
  • It is so generic every patient can answer it, without it seeming abstract and irrelevant, which is both important and impressive! 

I wonder how often it is used, and by whom? Wouldn't it be good as a screening thing before appointments with HCP, to prompt discussion?!

>>>>>>>

(Answers are multiple choice)

1. Did you discuss what was most important for you in managing your own health?
Not at all

2. Were you involved as much as you wanted to be in decisions about your care or treatment?
Not at all

3. How would you describe the amount of information you received to help you to manage your health?
I rarely received enough information

4. Have you had enough support from your health and social care team to help you to manage your health?
I have not had enough support

5. Do you think the support and care you receive is joined up and working for you?
Never

6. How confident are you that you can manage your own health?
Somewhat confident

The questionnaire ends on two open-ended questions:
How could your care be improved?
Greater integration between healthcare professionals, more pro-active and management plans! 

What would support you to feel more confident?
Easier system to contact specialist nurses/doctors for reassurance in between appointments


What constitutes a representative patient?

I was told today that there is a paradox in patient engagement - a paradox that as soon as you become a patient representative you are no longer representative!

I guess the added interest in healthcare is not universal, but isn't there no such thing as a typical patient anyway?! Surely, a representative that has had patient experience and can share the commonalities of their experience with NHS staff is still helping everyone? As long as those unable to meet the demands of formal representative roles are able to have their voice heard through other mediums.

I am not sure if this is really a problem,or just another idiosyncrasy within the system, but as a patient representative myself, I would love to hear your thoughts on what constitutes a good patient representative or a representative patient?!

Comments below . . .

Context of Control

Where would I be without BBC Radio 4?! Another great program that highlighted some key issues and provoked further thought . . .

The Forum programme discussed the concept of control and how we strive for control over our bodies and how disease can often cruelly take away that control. There were several interesting points. Firstly, the suggested made by one of the guests that illness had made her a nicer person - I immediately disagreed. Anyone will vouch for the fact that I can be very grumpy, bitter and angry about my situation . . . But I thought more about what she way saying and I do think that the experience of ill health (particularly ongoing illness) can make one much more empathetic and understanding - both important qualities! She also summed up brilliantly the limitations and change that her illness has imposed on her life: I have found new interests as I can only do a shadow of what I used to which is hard to face up to.

Control over our bodies is something everyone strives for - examples given on the programme include cosmetic surgery - but the need for that control only seems to become great when the control is out of reach! The sense of loss of control is one of the hardest things I have had to face, but I guess I didn't appreciate the control I did have (among other things!).




Another fantastic article from Melanie Reid

Another week, another truly amazing article in the Saturday Times magazine, thanks to Melanie Reid again!

Using the wonderfully accurate analogy of "snakes and ladders game" she explains exactly what I feel about the ups and downs of life with a long-term health condition:

"Snakes and ladders is a nice symbol for the unpredictable vicissitudes of my life: a game of optimism versus frustration; a supreme test of patience."

"Fact: when you're recovering from a broken spine, or indeed any life-changing illness or injury, you will always land in the snakes more often than you encounter the ladders. Fact: you also learn, painfully, that the snakes never go away. Fact: happily, neither do the ladders."

How wonderfully refreshingly honest and realistic yet comforting!

When reflecting on possible improvements she has made, Reid comments that "in the absence of a scientific answer, it comes down to whether you are a glass-half-full or half-empty type." In the absence of medical information, thee is little else to go on, making psychological support so important and central to the management of those challenging LTC! Sadly, that important is not yet reflected in some care pathways and doctors minds! But hopefully with mainstream newspapers publishing things like this each week, drop by drop, Reid could start off some ripples!

She ended with this, which after the rest of the article brought a tear to my eye and left me bowled over by the honesty, optimism and sheer awe that she could put into words so eloquently exactly how I feel! THANK YOU MELANIE!

"After my injury, I used to wait for the time I would be better. Cruise until I was back to my big stuff. Then I realised that whatever I am doing now is part of my life. Getting better will happen anyway, and to discard the summit of the mountain and put my all into every experience, every foothill, every unsteady step, that keeps me joyful on this journey without end. So I cling to my ladder, and smile at the view."

Dr Feel Good?

A big family weekend recently meant lots of weekend papers, so I picked up this article in the Sunday Times Style which was particularly interesting: Dr Feel Good (Francesca Hornak) explores the idea of bedside manner.

Quoting a number of recent reports about the increasing concerns of GP communication skills she questions whether this is part of the "me first culture". But the evidence presented shows the power of empathy: a study previously mentioned on this blog and others. Quickly, she gets to the crux: empathy and good communication skills can help the patient disclose all the information, which is so important in making a diagnosis. A damming comment from a psychologist follows "medical school doesn't equip science graduates to be emotionally literate."
The teaching is also biased - they are "taught that the majority of physical symptoms have a genetic or biological cause, rather than a psychosocial cause."
Further through the article the topic of alternative medicine is brought up. The efficacy of the treatment is "immaterial if felling listened to and worthy of attention week after week lowers your stress levels to the point that symptoms decrease." I can identify with that - a year or two ago I saw an alternative therapist because I just wanted someone to listen to me - not because I thought the treatment t would work or anything like that! I have now realised that counsellors can do the same thing for a lot less money, but such was my desperation to be listened to and comforted that I deserted my logical and clinical mind and turned (temporally) to the 'dark side'!!! This was reflect again the article: "the alternative sectors emphasis on listening, respect, compassion and treating the patient as a whole person with a complex history (rather than as a single presenting symptom) is precisely what most of us cite as lacking at our local surgeries."

In the whole it was a good balanced article with a doctor contributing to a box which subtly outlined the patients responsibilities in the context of primary care - an important and often forgotten aspect of this debate!!!

Sunday, 7 October 2012

Another physical vs. mental debate!

At a patient conference debate recently a clinician was explaining the psychological aspects of conditions - the consequences of these diagnoses and their effect in turn on the initial physical symptoms - quite a good topic to be given credit by a member of the medical profession and handled very sensitively.

He posed the rhetorical question "why is it easier to accept physical failing than mental failings?"

He didn't really have an answer, and I am not sure I do either! But it does succinctly explain the relief when there was a physical cause of my symptoms! We are what we are mentally more than physically, from a personality and character point of view. Physically our bodies are just vehicles for our minds to act through - may be that is why!? WE are failing as ourselves if we suffer from mental illness?

Whatever the answer, the essence of the question is very true and represents a wider perception of society I think! If anyone has any good answers, do comment!

Turning the tables

Ask a group of patients what they want . . . Their wish list for NHS services, and what does it look like? A massive restructuring and to-do list for managers and NHS staff! But there are some things that patients can do themselves to help make their wish lists more of a reality. This is not to say that patients can solve all the problems of the NHS themselves, but rather that they have some power to change their healthcare environment to better suit their needs.

For example, having to repeat medical history numerous times per admission/appointment/professional - a recurring comment from patients I think! Taking an A4 sheet with your full medical history and all answers to the questions that you are always asked, so you can pass it to the healthcare professional and not have to repeat it so often? Helping reduce the issue maybe?

Medical notes are never all together and my doctor never has the most up-to-date ones . . . This is very familiar to me! All patients have the option to be cced into all medical correspondence about them - patients can then have a full set of letters with them for every appointment, able to fill in the gaps for the doctor!

This issues affect all patients, but one group of patients are equipped to find their own solutions like those mentioned above are patients with long-term health conditions who actively and effectively self-manage their conditions. Without being pessimistic and actually just being realistic, the wish list for the NHS is never going to happen overnight. For the foreseeable future these issues will remain, but we are not 100% powerless to influence the situation slightly for our own benefit as patients! I think that is one of the most valuable lessons of self-management!


Monday, 24 September 2012

Mind Your Head Challenge

In August I attended the Mind Your Head Challenge in Dorset - a day around keeping mentally fit and active. Some interesting ideas came out through the day:

Mental health creates a £105bn drain on the NHS - higher than heart disease and cancer combined. Seems that message has not reached those commissioning services in the NHS!

It's all about journeys: the end result is often less important than the path and process of getting there. Obviously there are exceptions, but it does provide some comfort as my life takes a very convoluted route to nowhere, blown off track by LTCs!

Ten years ago the cost of stress in society was valued at £85bn. I would hate to guess what the revised value be for now?!

We have one mind and one future - the two are intrinsically linked! Such a good phrase highlighting the importance of considering the mind when treating physical conditions.

Some food for thought!

Another gem in the Times

Melanie Reid, journalist in The Times and author of Spinal Column in the Saturday Magazine, is a great hero and role model of mine. Every week she captures my sentiments and moves me. Although my condition is nothing in comparison to hers, I feel she talks in such a human and honest way. One of the main reasons I look forward to Saturdays!!!
Melanie Reid (Source: The Times)

This week she was talking about things she can no longer do and said this which struck such a chord with me:
"Action woman can't plan action when she no longer exists, except in her memories."

Last week she talked about the (lack of) off-buttons. "no, this isn't believable. This is too much - it's just too far fetched, and you reach out to hit the off button on the TV remote. Except you can't; because what's happening is for real. . . . The terrible but where you shake your head and change TV channel. Except we can't."

Another feeling I am quite familiar with, put into words in such an accurate and honest way!

I am so sorry for all that Melanie endures, but so grateful that she has the courage to verbalise these sentiments in a national paper for us all to share, because we do all share the sentiments, don't we?!

The Role of GPs

I promise I do more at weekends than just read The Times, but I would be lying if I said it wasn't a key feature of a Saturday morning!

On the 15th September, Matthew Parris questioned the role of GPs after spending some time shadowing them. He titles his article "GPs will soothe you , but won't really cure you" - quite provocative but delving deeper the article had some interesting points.

"Easily the principle cause of so many of the problems patients brought to the surgery lay in the mind, not the body. Loneliness, isolation, anxiety, stress, breakdown and mental: these are what ailed the weeping woman, they hypertense young man, the fellow worried sick about snoring or the last with shaking hands."

"what makes a family doctor indispensable is local knowledge, local involvement, long service in the same community, the kind of continuity that helps you to know your patients as people and families, and the pastoral, counselling and psychiatric skills that count for as much as medical expertise."

I agree with the description of the profession Parris gave, and the fact that he identified the emotional backdrop to these conditions. Isn't soothing what we often crave?! A little human reassurance is the only option when there is no cure. Often GPs have little option it to "just soothe you", but if they do achieve soothing, that is an achievement and a mark of a very good GP! Don't loose the importance of emotional support in the midst of medical and scientific technology, diagnosis and treatment!

Sunday, 9 September 2012

Paralympics

The oversized ParalymicsGB flag is still draped over a chair in the kitchen, and weekend paper supplements still litter the house - it is safe to say we are finding it hard to say goodbye to summer of sort we have had! Th Olympics were everything we thought they would be, but the Paralymics really delivered the moments of the summer plus do much more!
I was lucky enough to spend several days in Stratford watching some of it, and the excitement and passion of elite sport was there in abundance, but this was elite sport PLUS! Watching it was by far and away the most moving, humbling, inspiring and motivating thing I have ever seen! To see these athletes perform is such a privaledge, to see them excel and despite everything. It had a very personal message for me; I can do sport, I just haven't found the way yet!

Legacy is such an overused hyped-up word, but I had my own private legacy - overnight (well, in the space of 4 days in the Olympic Park) I went from being really ashamed of my stick and orthotics to not worrying about been seen out in them at all! It is soo liberating, and I only hope it lasts!

Amid all the awe of their performances on the field I was struck by a slightly pessimistic side - will everyone think all disabled people can do everything?! Again The Times answered my call and during the Games featured an article detailed all the medical assistance and care these athletes needed - it was so refreshing to hear about the boring and mundane side of disability and brought hope the reality of lives for these athletes when on the track or in the pool. A little dose of realism amidst the glorious celebration that was strangely very welcome!

The people we watched in London 2012 are the pinnacle of their populations - not all Somalian refugees can run 10,000 that quickly, not all Jamaicans can run 100m in under 10 seconds. The dames applies for disabled people! They are the rare cases just as able bodies athletes are among normal people!

Channel 4 did impress me with their coverage, but one part left me distraught - a wheelchair athlete was asked if would turn back time and avoid his car accident that put him in a chair. With our ANY hesitation he instantly replied with 100% confidence that he would not. I spent a long evening debating if I would want to turn back time - the answer is far from certain, but certainly verges towards "yes I would change things". Would I ever be in a position to answer that question with the confidence that he did?! I don't know, but boy is it a good thing to aim for!!!!

I admit I have more than a few thoughts around "having no legs seems so easy compared to my conditions", "would I rather loose a leg?" . . . What is easier?! Well, neither! They all have different challenges and limitations. It is not a case of comparison - but despite differences, the inspiration should be equal for all!

Role on Rio 2016!!!!!

Wednesday, 5 September 2012

Meaningful Patient Involvement and Feedback

The opportunity to be involved in the design and running of healthcare services in one of the patient rights enshrined in the NHS Constitution. Patient involvement is now very much (and quite rightly) coming to the forefront on the minds of those in charge of the NHS. As a patient, I think this is brilliant. Gordon Browns vision of user feedback like on eBay being replicated in healthcare is slowly being realised.

The key to ensuring that this is not just a tick-boxing exercise to enable patients to exercise that right, and to show willing to "listen", is to USE their feedback and contributions. The caveat here is that it has to be in a format that facilitates such use.

For example, having just sent considerable time trawling though NHS Choices and Patient Opinion feedback websites, it is clear that patients are keen to feedback and contribute. However there needs to guidance as to how their feedback is actually used - to act as a prompt on how to best fill out the forms. For example, when asked what could be improved, there were countless answered with just "everything" or "food" or "staff". Although that is possibly true, it is not conducive to using that feedback to promote change - what exactly needs changing? With the threat of feedback-fatigue across the nation, feedback really does need to be used. Without blaming NHS managers for not using it, the system of collecting feedback needs to be revised so that what is collected can easily facilitate change.

The second issue is around patient consultations on new service designs. The process of developing a new service is very complicated - tendering, market, provider and commissioners make for a confusing landscape! In asking patients to help inform the NHS. they need to understand the background and reality of the environment which is the backdrop to their decisions.

But the balance is hard to achieve - the need to grasp these concepts can isolate and exclude a number of patients that want to contribute. Patients with learning difficulties are important service users and therefore a critical group to engage without smothering in NHS facts!

I'm not sure what the answer is! But I know that 10 months ago, if I was asked about my healthcare services, I would have launched into a rant and diatribe of personal anecdotes with which anyone would have been pushed to find constructive use!!!

What stops us taking responsibility to care for ourselves?

Self-management is about taking responsibility for caring for ones self. Although not easy or always successful, self-management does present a framework for responsibility and caring. In that pre-EPP course time, what prevented me from taking that responsibility? Now as an experienced self-manager, what stops me looking after myself every day?!

I am inclined to say that it is because we are all human, all have lazy days and so on. But although that may account for the odd day or two, I do think there are much bigger issues at play. Timing, expectations and the structure of the healthcare system may all be involved, but I think fear is the main one.

Taking responsibility for our care means that if something was to go wrong, who can we blame? This is not to focus on the blame culture of
Modern society, but on the paranoia of patients with LTC not to do anything to make their conditions worse. I for one dread the prospect of having done something that has made me worse and kicking myself for having done it. I am sure I am not alone in this sentiment.

My care is important but I don't really know how much I trust my self to have control over it. On those bad days when it seems the whole world is against you, do I trust myself enough to make decisions that really are in the best interests of my health? Do I even know (on a good or bad day!) what is best for myself?!

Responsibility of care should not be an all-or-nothing concept - it should not lie with either our healthcare professionals or us as the patients. Sharing the responsibly and knowledge is the best solution, and will make that leap of faith into self-management more appealing. Shared decision making crops up again!

How to explain the psychological aspects of LTC

I recently gave a lecture to Cambridge medical students about the realities of living with long term health conditions and the theory of self-management. One of the point I really want to get across was the impact that LTC have on your mental health, and the close interaction between the two. What I wanted to dispel was the "it's all in the mind" attitude. I needed to convey this idea in a context they could comprehend - in their language.

I came up with the term "psychological and emotional side effects". I am sure others have thought of this before, but it really summed up the issue for me! The stress, anxiety, depression, anger and sadness that all accompanies a LTC really are all side effects. Like some drugs, the side effects can make the initial complaint worse - that certainly applies with these particular side effects!

The analogy applies up to the treatment of the troublesome side effects. If induced by medication, there are several options: medication can stop; doses lowered; more medications to stop the side effects; or relief that it means the medications are working - unfortunately none of these apply to the emotional and psychological side effects of long term conditions. The precipitating factor can not be removed, or reduced, and treating them with more medications doesn't deal with the root of the problem. These side effects are quite normal, but debilitating and distressing nonetheless.
Managing these side effects require a great investment from the person themselves. They need to acknowledge the cause, and develop coping strategies - which is where self-management comes in. As well as managing medications, these patients have to learn how to control the psychological and emotional side effects by teaching their brain to work productively alongside these unwelcome symptoms - the most debilitating part of a LTC.

Sunday, 19 August 2012

BBC Paralympic Drama: Best of Men

The best drama/documentary I have watched in a very long time.

Deeply moving, inspirational, funny and so relevant on so many levels. The attitude and insight of the German doctor was remarkable - but his ideologies still remain somewhat remarkable today. Although rehab is widely available for such spinal patients today, the concept of "of course your arms will hurt if you don't use them" is not as integrated in practice to modern medicine as we may have thought. One of the things that stuck me was how much a 'breath of fresh air' the doctor seemed - he was exceptionally revolutionary at the time, but his ideas still seem fresh today - keeping patients mentally and physically stimulated, for example! Although in far better health that the boys of the ward, there is much for me and other people with long term health conditions about regaining our lives and practical approaches to doing so!

I can not wait for the Paralympics, and am sure I will find them truly inspirational, especially given the context of their origins.

Tuesday, 14 August 2012

The role of the Pharmacy

There is much debate about the privatisation of healthcare services, but right under our noses is a really positive example of private companies complimenting the services of the NHS . . . Pharmacies!

They represent an excellent resource for patients - information, support, signposting etc. It was not until the Expert Patient Programme that I realised what services pharmacies can offer. They are an excellent advice centre for anything to do with medications and side effects - a great port of call before a GP. They also can do quick blood pressure checks. The very nature and location of then takes away the tedious nature of going to the GP surgery - it is in town, so just like any other errand I have to do, and they don't have long waiting times either! It doesn't feel like a medical appointment, which is very refreshing and helps maintain that normality people with LTC crave!

In the scope of self-management, staff are receiving a wealth of additional training and I hope that pharmacies will become well used hubs of self-management advice! I have certainly found them to be an invaluable additional weapon in my fight against my conditions!

Monday, 13 August 2012

Health and Social Care

Within the public sector, health services and social services are both very large organisations. There exists a lot of overlap between the users of both services. That overlap is 'honoured' with the Health and Social Care Act, and the new cohorts of health and social care study students. But the names still suggest a divide between the two. What is the difference between healthcare and social care?

Healthcare needs to be provided by trained healthcare professionals and involves administering treatments and therapies. Conversely, social care involves the daily personal living activities such as getting dressed, washing, preparing food and general well being.

This presents a dichotomy for me - 'social' therapies such as counselling, relaxation, getting a job and improving my social life has had a greater impact on my physical medical conditions than any drug or medical treatment that my healthcare team have prescribed me!

My physical medical conditions can not be considered in isolation from ME - my social situation and the impact it has on that. So is the divide artificial? In many ways yes. There will be very few people under he care of social services who are not regular users of the healthcare service, and the healthcare service would probably be doing a better job at treating those propels if their social circumstances were taken into account. This means more than just ticking boxes on admission about employment status and housing type - it means assessing the impact of the illness of their life. For a pianist, loss of finger dexterity is a disaster whereas the prospect of a mastectomy for a model could be career ending.

I don't think the answer is just integration - I think the answer lies in getting healthcare workers and social care workers to fully understand the impact social situation has on health and visa versa. You can integrate the two services on a practical and organisational level, but if the staff do not understand well being and it's context then there is little hope.

Saturday, 11 August 2012

When is my LTC just a good excuse?

This post comes after much soul searching when I did not complete an action plan I had set myself one day. I debated with friends what was the route of the problem as to why I did not complete it and we came to this conclusion:

Was I using my LTC as an excuse because I didn't really want to do my action plan? What is the difference between good self-management and being lazy?

With fatigue and this pacing myself being such big issues for me, I was being over-cautious but felt guilty and realised I might just be being lazy, using the need to pace myself as an excuse! What is the difference?!?!


This issue was very stimulating during our discussion, because laziness is what so many people who don't know our conditions can often assume about us. It is embarrassing to be considered lazy at the best of times, but that 'label' has added meaning for those of us living with long term conditions.

One of the points that was raised was that every normal person has lazy days and creates excuses . . . We are also allowed that luxury too and should not punish ourselves too much for it. We are only human. So what is the issue then? if we adopt laziness as a long term option to manage our conditions and can't bring ourselves back from it. A vicious circle awaits! Using our conditions as an excuse is difficult - some joke it is the silver lining to having to live with them, that they create a always available and valid excuse but that would damage the reputation of all of us if we were to really use them as such.

Continual experience of your own body and how it reacts can be a good guide to why you are not doing something. Making yourself think if this activity/task was shopping/seeing friends/something positive would I do it? If the answer is yes, then you are probably avoiding the task and not really self-managing! Importantly, we need to fill our days with tasks that are enjoyable, so we are less likely to avoid the task and then wrangle with ourselves worrying we are simply lazy!

Quite a conundrum and something very difficult to discuss with complete honesty!

Food for Thought

I enjoyed a very interesting, stimulating and thought provoking discussion with a friend about the benefits of healthy eating . . . What are the real benefits of it - the physical nutritional value or the psychological virtuous feeling you get know you are doing something good for my body?!

They can both be very powerful effects! I will leave it the scientists and research papers to prove to you the benefits of a good diet - they have a wealth of data.
For me, food is one of the only things that I can actually have control over in terms of my health, so I try to optimise my diet giving my body what it needs in an attempt to heal myself in the only way I can. I may sound like a control freak, but I think many other people can empathise with me on this one. I feel sludgy when I eat junk - caused by physical or psychological reactions I don't know. Perhaps my body has acclimatised to the healthy things I give it? There is no doubt, I hope, that this healthy eating will have delayed the onset of further conditions and illnesses, but the jury is still out on the benefit it has had for what I live with now. It has not cured me (I know it wont!), and I still feel grotty most says, but as I alluded to in another post (What is the benefit?), I may be feeling a lot more grotty if I wasn't eating what I do...

But if I can help myself psychologically now and protect myself in the future, that seems a pretty good balance for me right now! It is an added bonus that I find the healthy stuff really yummy as well. I guess this a real case of food for (positive) thought! Related Posts Plugin for WordPress, Blogger...

What is the benefit?

I have just tried a new medication and have not noticed any benefit. I have been doing Pilates and Alexander Technique for months on top of efforts to fit in physical activity each day. I eat well, and do relaxation techniques to look after myself mentally. I get adequate sleep and don't drink. By all accounts I should be feeling on top of the world! But have I actually noticed the benefits of all of these activities? Sort of! But what is the kind of benefit I am looking for?

Sometimes the benefits can be hard to see because it is the prevention of further decline/symptoms and not necessarily a direct positive change in symptoms. That usually means these activities are really important to do, but sadly not seeing direct positive benefits can make it difficult to find motivation for doing them, and sustaining them.

I am beginning to lean that such is life with a long term condition - there will be hoops like these activities to jump through, where there seems no reason. I think its about trying to associate positive emotions/rewards with these activities - for example the psychological benefits of the healthy eating I mentioned in my last post. I find action plans really helpful too (I am very much from the Expert Patient Programme school of thought on self-management in this case), but I am not pretending there is a simple solution out there. Although I must say, fear of what will happen if I don't keep up all these healthy habits is a pretty good motivator! Related Posts Plugin for WordPress, Blogger...

Social vs Medical Models of Disability

This was something I had not considered before a thought-provoking training course - the definitions of impairment and disability.

Impairments are things like hearing and walking difficulties and pain. Disability, in the social model, is the loss of opportunity created by society because of barriers. In the medical model, disability is an illness that needs treatment.

That model, in which the healthcare professionals are trained in, disempowers patients. But it is more that just the emotions of patients at stake . . . With the attitude of trying to treat these conditions in the traditional sense, many healthcare professionals miss the fact that they can not be treated with drugs and operations. Of course, it is worth trying initially but alternative treatments ahold be considered which are not so much treatments but coping and management strategies for patients. Examples include counselling, CBT, relaxation techniques and other emotional tools.

Changing the minds of patients and healthcare professionals to this social model is the real challenge!

Friday, 10 August 2012

Power of the Brain in CFS

The BBC has recently reported on a study published in PLoS ONE that suggests exercise and behavioural therapies are the most effective and successful ways to treat Chronic Fatigue Syndrome (the full article is here). Having completed the Expert Patient Programme, this does not surprise me, but it does please me that scientific journals are covering such reports.

Although the focus of the BBC report is on cost savings, I think the personal benefits can also be significant. Professor Michael Sharpe from Oxford University sums up what I hope will be the impact of this study: "this new evidence should encourage health service commissioners to provide these treatments to all those patients who need them."

Interestingly, this study has been criticised by patient groups who prefer "pacing therapies". I am not sure how 'pacing' counts as a therapy, as  from my experience it is just limiting everything you do. I have certainly done it, but find the mental consequences very difficult. Exercise and behavioural therapies are a much more positive and proactive way of managing these conditions. If exercise and cognitive therapies work, that by no means makes the illness all in the mind. Getting over that hurdle could open many more people to proactive positive self-management that means they can miss out on less in life!

Tuesday, 7 August 2012

A Balanced Argument?

Do rights depend on responsibilities? Is the NHS really that bad? Do we really want a healthcare partnership between ourselves as patients and NHS staff?

I may be unpopular in saying so but I strongly believe that campaigning in healthcare could become much more effective if the issues at stake are presented in a balanced way with perspective, rational and sensitivity.

Daily Mail headlines sell papers but don't get doctors, nurses and other NHS staff on board. They shock the public and lodge the cause in the nations mind, but just foster defensiveness among staff. For change to really happen, both sides of the "team" need to be onboard and to use the phrase "ready, willing and able".

Demanding change and expecting that to be achieved entirely through the efforts of one party of the partnership is not only unfair but illogical and ineffective. The results will not be lasting or embraced.

As an organisation the NHS is impressive. It delivers an excellent service to the vast majority of patients it serves. As much as we feel entitles to expectations of the NHS, the NHS can expect things of us. Acknowledging these responsibilities that cement a successful partnership is fundamental.

The work of charities is amazing, and very much a necessity for millions of people across the country but they can achieve better results for their members if they present a balanced argument, showcase good work and deliver their messages in such a way as not to isolate and loose the vital support of the staff they are trying to influence.

Is there more to life than being happy

An article from The Times was mentioned in The Week, debating the value of just being happy. Being happy is obviously good and worthwhile for society as a whole, but the author Philip Collins adds to argument the benefit for society, as a whole, of a few unhappy people. As examples he uses musicians and artists, but also comments on campaigners and carers. Although as individuals they may not be very very happy, they have "devoted themselves to causes that defy their own well being".

If there is more to life than trying to be happy (which I believe is important, but only half the battle) then what is it????

Using the cases of the carers and campaigners, fulfilment must come into it, as well an contributing to something greater. Society should be very grateful to those people who help the rest of us seek happiness.

This relentless focus on happiness can make one feel very sad - turning unhappiness into a positive is something I strive to achieve having been handed a fair chunk of unhappiness through illness.

Wednesday, 18 July 2012

Seeking release

Just caught a really interesting and inspiring chat on Mid Week on Radio 4. They were interviewing members of the cast from a touring cultural olympiad show - In water I am weightless. . . . It is about taking away the burden of disability and embracing what you can do! They had a very inspiring attitude and I think it will bring hope to others. The title of the show is a wonderful phrase and reminds me of the film I recently watched called Inside I'm dancing. They are both about release from disability and it's confinements.

One phrase used in the radio article struck a cord with me; "I was fine being in a wheelchair but having others watch and look at you in a chair is very different." I think that really highlights the stages of recovery and expectancy. Being public about disabilities is quite a step. I sought comfort from that, realising that it is not just me who feels at ease with my condition until I face people! It can be very disconcerting and feel like you have taken a few steps backwards when you.are faced with these public situations, but really it is just part of the change curve and lifelong process of acceptance.

Monday, 9 July 2012

The need for holistic approach to HEALTH

Today, BBC Health published two stories, which illustrate the need for health to be considered holistically - not just the symptoms of a patient in the context of an hospital ward or clinic.

  1. Loneliness is a major health issue
  2. Medical Officer urges healthy homes
These two stories taken in isolation make a strong case in themselves, but together, they show the diversity of factors that can influence our health, and consequently the enormity of the public health challenge, the need for people to take some responsibility for their situations, and the idea of patients as people with lives lived around people in buildings. 

Its the simple little things that really add up, that don't have to, with equally simple interventions! 

Sunday, 8 July 2012

Community Reporters

I have just been on a three-day training course by Peoples Voice Media on Community Reporters.
As a concept, community reporting is quite simple, but the more I leant about it, the better and more exciting the concept became.
In the context of healthcare, empowering patients by giving them a voice is very valuable. In contrast to other 'voice gathering' tools, community reporting seems to have the capability to create true stories in a format that is digestible, and really empowers patients and those reporting.
The applications in healthcare are numerous, and particularly with young people who are often hard to engage - at the age when most people take good health for guaranteed and so may not traditionally engage! But the use of technology should make it attractive for young people to become involved. At the same time, however, the technology is not prohibitive to other generations, and being interviewed by a community reporter doesn't require any grasp of technology.

Check out Peoples Voice Media for more information, and watch this space for some community reporter videos and podcasts . . .

Art vs. Science of Medicine

Having started my health-based career at Cambridge studying medicine, I was originally a firm believer in the science of medicine. The argument of science vs. art in medicine is ancient and will continue for as long as humans do I think, but the issues around the debate are very topical when considering the redesign of NHS services.
For me the science of medicine is the amazing technology, scanners, drugs, and devices that have revolutionised patient experience. The 'art' is the softer stuff - the empathy, the consultation techniques, the well-being and consideration of emotions, provision of information and the facilitation of shared decision making between patient and healthcare professional.
I really feel that this debate has been shifted from the pure hypothetical and philosophical to completely practical and relevant. The very nature of the NHS in the coming years has to be very different to how it has been so far. The technology is amazing, and will make an enormous difference in saving lives that would have been impossible to save only a number of years ago. But the real challenge the NHS is facing is not the acute life-threatening conditions, but the long-term conditions that are not dramatic, but represent a significant loss of quality of life. The numbers affected by these LTCs are gigantic, and will continue to rise. New MRI scanners, new devices and drugs will only go so far  in managing these new demographic of patients. It is the process of empowering these LTC patients and getting them in the right emotional and mental state to take responsibility to self-manage their conditions which is going to be the saving grace of the NHS. There are no diagnostic devices, drugs or data that can inspire that emotional mind-set - the art of medicine, supported by science, needs to become prominent, to give the NHS the sustainability it so desperately needs.

Thursday, 21 June 2012

Acceptance?

The recent celebrity story of Jack Osbourne's MS diagnosis has been met with some very mixed responses and has really made me think.
Many people have been grateful for the awareness the story will have generated for MS, and some hope that might be seen in increased fundraising and support. Others have been quick to complain that it takes a celebrity to make a MS story a headline, and the focus is dis-proportionally on Jack rather than the MS. With any disease, different people have very different experiences, and there is some fear that this MS story will become the bench-mark for public understanding and sympathy.
One thing that struck me as a patient suffering from other LTC's was Jack's approach. Several of his comments below provoked quite a reaction in me, and certainly made me think . . .

shock of diagnosis . . . but refusing to let it get him down


"while I was waiting for the final results, I got really really angry. Then I got really sad for about two days, and after that I realised being angry and upset is not going to do anything at this point - if anything it's only going to make it worse."

Moto: Adapt and Overcome


Whilst I fully respect Jack for being so public and honest about  his experience and health, I can not help feeling this sends out a message of over-simplicity about the Change Curve and that 'acceptance' isn't a destination but a journey. There have been times when I thought I was making really good progress towards 'acceptance' then something happens (seeing someone enjoying a hobby I can no longer do for example), and it hits you that you have really only just begun scratching the surface of 'acceptance'. I think that it is only retrospectively, you realise how much along that path of acceptance you are and how well you are coping.

I wish Jack the best of luck along this journey, but want to let others know that even if you reach acceptance you can still have moments of panic and anger at the situation. The ebbs and flows of these emotions are all part of the life that a LTC gives you!

Wednesday, 20 June 2012

Integrated Care: what do patients, service users and carers want?

National Voices have produced a great report on Integrated Care.
The top lines sum it up really:

People want co-ordination. Not necessarily (organisational) integration.

People want care. Where is comes from is secondary. 


Worth reading!

Tuesday, 19 June 2012

Why should the NHS promote self-care?

The motivation of an organisation to do something or embrace an idea can be quite telling about their over-all attitude. The case of self-care is a good example of that, and shows the importance of doing things for the right reasons.


Several years ago self-care was seen as "free-good", a money-saving tool. The mindset has begun to change towards appreciating the direct benefits for patients such as control and empowerment. In order to reap those benefits, self-caring patients need support from healthcare professionals. Once some investment has been put into a self-care infrastructure, the benefits become much more significant and widespread. 


Self-care is not "free-good" and should not be seen as a money-saving tool. It is primarily a tool to optimize the experience of living with a long-term health condition for patients, to empower them and minimise psychological illness. If done successfully, it can create savings for the NHS but that should not be the motivation for embracing self-care, because if it is, the key principles of self-care are at risk of being lost in a sea of 'reducing service use' rhetoric. 


Because the motivation determines the outcomes, and the real outcomes for self-care are personal to the patient and can not to be measured in monetary values. 

Monday, 18 June 2012

Guardian Discussion

On Friday The Guardian Healthcare Network hosted a live discussion about "What matters to patients" with an expert panel. Here are some of the main points for me . . .

  • Jackie Daniel: "People have a lifelong relationship with healthcare"
  • James Munroe identified giving patients information in a timely way one of the 'basics' of healthcare
  • Don Redding mentioned the Picker Institute principles of patient-centred care
  • James made another good point - that for patients, filling out a survey is different to being heard, and that was re-iterated later  with a comment about "survey and consultation fatigue".James  expanded later saying that the cost of everyone having a voice has effectively fallen to zero, but the cost of listening has not! There will be more stories but there may not be anyone taking any notice of them! Quite critical if people want those stories to encourage change!
  • Encouragingly Stephen Dunn said "we need to move on from talking about a revolution to delivering a revolution", which is a very important distinction to have mentioned! There is a definite risk of rhetoric not lining up with practice in this area.
  •  Jackie commented that "the true measure of success must be not just short-term health improvement, but ways of helping people improve their lives and their life-chances on a long-term sustainable basis" which is something I value as a patient and would also help towards a more sustainable NHS on the whole too. The short term view is because of the electoral cycle and short-term horizons of managers - short-term results get funding/promotions etc!
  • Potential of co-design of services was raised
  • The one-size-fits-all approach doesn't work! Patients are very different and staff need to be "responsive to individuals"
  • Don Redding commented about feedback kits that "its not the kit, its what you do with it" which is a key point! If the great information collected is not turned into practice changes, it is lost. 
  • The role of technology was appreciated, but it was understood that it is not a substitute for talking to people - GOOD!!!
A really interesting discussion with some thought-provoking points raised. Looking forward to the next Guardian discussion! Thanks to all the panel for some great contributions and ideas!

Art of patient satisfaction meets the science of medicine

An American article, written by Evelyn Theiss and published on Cleveland has some good points about patient experience . . .

  • Research has shown a correlation between patient experience and outcomes - good experience and good clinical outcomes tend to go hand in hand (this point can be argued both ways, with a good outcome predisposing to a good experience - chicken or egg!!!)
  • Replacing yes/no questions with more open questions is important such as "why do you think you have this symptom?" shows the knowledge patients already have about their condition and helps make appointments as effective and useful as possible
  • "There is more the quality health care than great outcomes. There is the entire experience that patients have ... it is about communication and the expression of care and concern at times when they are most needed."
  • "Medicine has gone from high-touch to high-tech" - this is very true and continuing to evolve towards high-tech with the focus and hope of tele-health (maybe at the expense of human care and time)

Wednesday, 13 June 2012

Promoting Optimal Self-Care

I have been lent a copy of "Promoting Optimal Self Care: Consultation techniques that improve quality of life for patients and clinicians" produced by the Dorset and Somerset Strategic Health Authority (2006). It was really interesting to read and has some very good points on self-care.


  • Self-care is not the same as no care - this is  an important selling point for patients, who may feel the doctor is dis-owning them!
  • Outside of hospitals everyone self-cares, but not everyone self-cares optimally
  • Optimising the capacity's to self-care means helping people to manage change by using an appropriate consultation style that addresses health-related benefits and expectations and promotes activity - activity is really important, especially when patients can feel trapped in inertia with their condition
  • People only optimally self-care once they know that their medical condition is optimally managed - self-care is not the first option after a diagnosis and doctors need to do their bit first!
  • Biopsychosocial domains: considering and assessing all three is really important
  • Health-related beliefs and expectations are strong predictors of quality of life - why is more attention not paid to them then?!?!
  • Many people develop health-related anxiety as a result of misconceived beliefs and expectations - highlights the importance of information!
  • Many people continue to live their lives, expecting themselves to be the person they were before the onset of their disorder. Being unable to live up to this expectation can lead to worsening of symptoms, anger and frustration. People need reasonable goals and a 'desired future self' that is attainable - I know it hard to get the  bottom of these issues in an appointment, but doctors should be aware of the issues and begin to address them, or signpost to someone who has the time to address them properly!
The whole book is fascinating, and quite encouraging to read, as it is written by doctors for doctors. Implementing the principles of motivational interviewing and promoting optimal self-care are more difficult in the time-poor setting of a consultation. Overall, a great self-management resource, but still leaves me wondering how to guarantee up-take on the ideas by doctors?!

Positive thinking . . . And posture?

I had a very interesting discussion with my Alexander Technique teacher this afternoon during my session. During a recent relapse I have felt my core become weaker -and consequently am aware that I have been slumping a bit. When telling him this, he asked how my depression was during the relapses - he  has been noticing a trend with his clients that they often had both depression and a slumping posture.
I certainly notice myself slumping when I am having bad days and a great email/call which engages and enthuses me does make me sit up better for a while!
I wonder if any one else has noticed their posture in relation to their mood? It is an interesting concept, and possibly quite important in patients with long term conditions such as back pain that are often accompanied by depression.

Update: In the esteemed scientific publication that is Red Magazine, a study from San Francisco State University is discussed - in their study, they found that getting students to walk tall (and fast) improved their energy levels and made them feel more cheery. As Dr Pepper explained, "your brain affects your body - but your body equally affects your emotions."
I do think there is a link, whether associative, resultant or causative! If I had time, I'd love to research this area more...

Saturday, 9 June 2012

"Facilitated Follow-up"

The Journal of Participatory Medicine recently published an article about a practical issue - patient follow-up. Although focused on the potential for technology to solve the problem, about which I have some reservations, it made clear point.

"The rubber meets the road after someone leaves the doctors office and starting taking the medicine, or implementing the care plan. The key questions people needed to ask shortly after they got home:
How do I implement the program or take my medicine?
Is it working? How would I know?
Am I experiencing any side effects?
What's happening subjectively or objectively in my life?"


As the author points out at the end, access to data is important, but it needs to be supplemented with feedback and continuous feedback too! Shortly after getting home is a difficult time - assimilating all the information from the appointment invariably leads to more questions, which need answers!

Mental Health vs. Illness

Part of the stigma around mental health is the association of conditions such as schizophrenia and bipolar.

In a blog on YoungMinds by Dr Aaron Balick looks at the artificial distinction between mental health and illness. He says that mental illness needs to be thought about differently - "less of a 'them' and 'us', and more as a variety of human experience" - we all lie somewhere on the spectrum between mental health and illness.

One point I think is important to make is that mental health should be considered in the wider context of 'good mental health'. Even people not suffering depression or anxiety can take steps to improve their mental health, in the same way we approach our physical health. It would be good to see steps being taken to prevent development of poor mental health and to sustain good mental health!

Preparing for Appointments

My appointments feel like they come round once in a blue moon, so preparing for them well is key to not stressing for the next how-ever-many months! The US Agency for Healthcare Research and Quality (part of Department of Health and Human Services) has developed a really helpful website and on-line tool to help patients prepare for medical appointments.

Very aptly, the website has the heading "Questions are the answer".


They have a question builder app which suggests questions related to topics that you want addressed in the appointment. Stories from clinicians and patients are also included (see here), which is great, as I feel very strongly that stories are excellent ways to convey healthcare messages.
An excellent resource to help patients self-manage!

Patient Engagement Pyramid

On the HelloHealth blog Stephen Armstrong raises some important points about patient engagement . . .
Refering to Abraham Maslow's Hierarchy of Needs, he successfully places in the context of patient engagement (and electronic health records). Each level needs to be satisfied before progressing up the triangle.















He makes an excellent point at the end of his blog post: "wellness should be something more than the absence of illness or disease. It is about state of mind, demonstrated by sustained commitment to prevention and healthy behaviours. The key is starting the wellness journey."


This triangle makes self-management and engagement achievable in steps.

Guilt ... Depression

A common sentiment among patients with long-term conditions is that of guilt. Being a burden on family and friends, disrupting their plans, dragging them through the emotional roller-coaster of life with a LTC . . . the list is endless. Another equally common feeling is that of depression. I can stick my hand up and say that I have felt both!

New research published in the Archives of General Psychiatry suggests that guilt plays a role in depression. Using MRI, the researchers at University of Manchester showed linked activity in the two areas of the brain that deal with guilt and depression respectively. It was said that this could be a new way to predict depression risk - which is interesting.

The point I take from the finding is that guilt as an emotion is one which needs to be addressed in patients with LTC in an attempt to prevent the progression to depression.

Some great DH LTC Strategy blogs

Since my post when up, the Department of Health have had some really great articles on their website! It is so encouraging to see the discussions and hopefully they will contribute to a really effective and successful LTC strategy!

Simon Eaton questioned the patient-centric approach clinicians say  they already have (quite rightly!). He says that "understanding the patient's needs simply isn't enough . . . we need to encourage and support their role as active self-managers." He questions the imbalance between the perceived importance of biomedical care vs. consultation skills - something I definitely feel is skewed towards the former!

Christine Harrison highlighted that the grass roots reality of long-term conditions (specifically neurological ME) is very different to the strategy and policy ideas and understanding. Identifying GPs as gatekeepers is important - targeting them with condition educational programmes could be the most effective approach to reduce the mis-diagnosis that is so common for rare and complex diseases?

Amy Edwards has a refreshing and grounded approach as an Occupational Therapist (OT), which is a pleasure to read! As an OT she understands the importance of a "functional approach . . . an understanding of the patients' condition and how they may be affected psychically, cognitively and psychologically." Working towards goals with the patient creates significant outcomes. She also commented that these interventions can improve independence, quality of life and "help the person to be seen as a whole"  which are all enormously important (so much so that I feel they can improve the physical symptoms too to a degree).

Looking forward to seeing some more articles up, and the continuing debate! I think it is really encouraging that the DH is setting up this very wide reaching consultation with all the stakeholders, and becoming increasingly aware of the issues that matter the most to patients with LTC. I look forward to seeing the points made by everyone on the site being transformed into a much-needed holistic strategy that works on the ground!

Quality of Life

The most inspiring talk at the Tackling Long-Term Conditions: Health and Well-being conference was a masterclass given by Dr Charles Murray of the Royal Free Hospital in London. A gastroenterologist, he discussed inflammatory bowel disease (IBS) and the impact on patients' quality of life. What struck me the most that as a top doctor he had considered this! It is something I have found missing through my experience as a patient.
He admitted that doctors often dramatically underestimate the impact that conditions have on people's lives. When it comes to quantifying impact, the box-ticking questions like bowel movements are far easier to record than the true emotions of these patients. Importantly he commented that "when patients are supported with information, the disease becomes something they have but doesn't define them." With the importance of information understood (a key principle of self-management), doctors and their clinical and non-clinical team could really revolutionise the way they support patients in caring for themselves as Expert Patients.
He spend time on the importance of emotional well-being and has been involving psychological services in some clinics, which is amazing to hear! I want my doctors to be like that!
He made a very interesting point about timing - in his experience, patients need more time with doctors in the time just after the diagnosis that later on in the disease. That was because they needed the time to consolidate the information they had with the clinical team. The assumptions that staff make about understandings of the condition and treatments can often be false. I can agree with that from my own experience.
A frequent issue that was raised was how to measure quality of life? Several examples were given such as IBDQ, SIBDQ, SF12v2 and SF36. With well-being linked to functional capacity of the patient, he felt that better measuring tools could exist.
It was a fascinating talk, and so refreshing to hear the medical profession raising and discussing these issues instead of just us patients!

Tackling Long-Term Conditions: Health and Well-being

On the 30th May I attended a conference in London about long-term conditions. It was a very interesting day with some great speakers raising some thought-provoking points! Here are my highlights and points of note . . .

  • Dr Helen Bevan discussed change management, something frequent in the NHS but useful to hear the principles, particularly the four sources of energy (intellectual, emotional, spiritual and physical) of which I think I need to find more of a balance!
  • David Behan brought up a great point that there is a mis-conception about typical patients being healthy adults with single  episodes of care. Discussing integration, he commented that "information is the key enabler of integration" and that what needs to be done is to integrate care around individuals and not just integrating organisations together.
  • Jim Easton opened by saying that the LTC problem is PERSONAL because of its scale it affects all of us, which was a emotive appeal! He went on to say that "we need to know who our patients with LTC are so they can be used as a resource for self-care and shared decision making". I don't know how these patients can be identified if they don't identify themselves as patients with LTC - GPs, nurses and community links could establish that? Encouragingly, he finished by saying that "the keystone of the future of the NHS is long-term condition management."
  • Following on from Dr Helen Bevan's point on energy within the NHS as an organisation, Dr John Parry turned that around to say that we need to utilize patients' energy (for becoming involved). That is very true - patients have a strong motivation to improve their situation that could be harnessed to great effect!
  • In an excellent Masterclass on Ethnography (see previous blog post here), Oliver Sweet made several very poignant remarks... "I'm fine" - people need support but that isn't always obvious until you take time to see their routine and lifestyle. Another comment by a patient he picked up was that is was ok for their husband to be ill because they could "afford to be ill" - sadly that is not the case for many many people. 
  • Dr Charles Murray gave an outstanding and inspiring Masterclass on quality of life in relation to IBS - so much to say that a separate post will follow . . . 
  • John Loader opened the afternoon with a video I have included in a previous post (see here) that really grounded the discussions for the afternoon.
  • In relation to the contraversy of a 7-day NHS, Dr Janet Williamson commented that "do doctors and HCP know how valuable they are as a resource and helpline for patients?" I think that if doctors and HCP really grasped how much patients rely on them, their approach to the six-monthly appointments might be slightly better?!
  • During the Question Time at the end, some interesting points were raised by the audience . . . Encouragingly, the panel thought that "clinical effectiveness and financial sustainability can be optimized by addressing patient experience." Also the importance of psycho-social support in relation to survivorship was recognised. One very good point was made that despite "well-being" being in the title of the conference, it was given little focus during the day. I very much agreed - there was a lot of discussion  of technology and clinical outcomes and process and change, but the core of long-term condition management was ignored. Well-being is hard to define (as I mentioned before here), but that does not excuse it! 
I left the conference feeling really excited about some of the work I had heard about, but also with a feeling of concern about technology solutions. So much time was devoted to technological solutions such as tele-health and patient record management systems. I fear that the glamorous corporate backing behind these 'interventions' is being favoured as a simple solution. The reality of installing technology in comparison to talking and supporting patients psychologically is far easier and much more measurable. Both approaches have their merits, but technology is no replacement for the human time, compassion and support that patients with long-term conditions really need.