Hugs all round

I have been really struggling to feel festive this year. A bad cold, a couple of rough weeks health wise and a very low mood few weeks certainly haven't helped. But what I have found to so hard in recent weeks is the relentless negativity around the NHS. I don't read the Daily Mail. This negativity is from my Twitter feed - a collection of health care professionals and NHS people who are normally passionate and enthusiastic but overcast with the media portrayal, privatisation and reality of our wards and clinics. 

I know the weather hadn't been great (we've had very few of those wonderfully crisp and fresh winter mornings) and that by Christmas every year everyone feels a bit run down. But this year feels more than that. 

Integration Pioneers, Personalisation and Self-Management

Unfortunately, travelling is something I find very difficult, and a trigger for my relapses. But fortunately, I have been lucky enough to work with some very accommodating and understanding people such as Don Redding from National Voices. I have been able to contribute and take part in conferences by video, instead of having to travel and risk a relapse to be there in person. If I'm going to be talking about self-management, its important that I self-manage myself too!

I was flattered and delighted when Don Redding asked me to contribute to the NHS Improving Quality Integration Pioneers event, and below is a transcript from my talk that I delivered via video to the event on the 3rd December 2013. This is also available via the National Voices website. 

Sink or Swim... or Sail!

Sailing was a central piece of the jigsaw of my life. Being on the water, socialising with sailors and everything about it defined me. Following a particularly bad relapse triggered by a neck injury that happened whilst in the middle of the Solent, my doctors (who incidentally didn't sail) said a categorical NO to sailing. The jigsaw that made up my life was falling apart.  

From where they were sitting, and having had to pick up the pieces of me being transferred from a boat in the marina to dry land then whizzed with blue lights into A&E strapped to a C-spine board unable to move or speak, sailing seemed risky. I agreed with them. 

But I also began to realise there was a risk to my mental health if I didn't go sailing, as I plunged into despair and depression. Then I watched the Paralympics, and realised that there must be a way. The simple mechanics of what happened to my neck (which because of the extra bendyness caused by the EDS and my Chiari squishing my nerves a bit) could happen if I trip walking along the pavement. Just living seemed pretty risky, but I wasn't going to stop doing that was I?! 

Transforming patient experience, WITH patients

I had the privilege of speaking yesterday at the King's Fund Transforming Patient Experience conference. The opportunity to speak about the role that patients can play in improving this has made me think more deeply about both what we can bring to the improvement process as patients, and what some of the challenges are. This post is a summary of the topics I covered in my talk. An abridged video of my talk is available here, thanks to the King's Fund.

Extreme contrasts: a life in two halves

I have recently commented on Twitter a few times that I felt like I was leading two very different lives, as a patient and as a professional...

Talking to others patients who are working in this area, I don't think I am alone with this feeling. Anyone (in whatever line of work) will feel separation and connection between their personal and prefoessional life, but I think the separation and connection are both more extreme and somehow simultaneous when working in this area.

The worst kind of retail therapy

I have been shopping recently, and it was the worst kind of retail therapy I have ever done. 

I bought a wheelchair. A wheelchair that I am going to be using. 

And while it was far from therapeutic as an experience, it was also far from simple...

There are so many things to consider when it comes to getting a wheelchair - seat width, depth and angle, type of footrest, height and style of back support, type and height of arm rests and the type of wheels, their heights and camber and the tipping point of the chair. It has been a very steep learning curve. But there have been some really good resources that have helped me along the way, and that's the point of this blog post really! 

Personal Reflections on The Future of Health

The two days I spent at Future of Health (and the following few days recovering) have been the hardest, busiest, most challenging, intense, overwhelming and exciting couple of days I have ever had.

Let me explain...

Long Term Conditions

I am a passionate advocate for meaningful patient involvement in all aspects of health care.
With conferences as the melting pot of new ideas, it seems only right that contributions from patients themselves are added as essential ingredients into the melting pot. I have commented on this after attending most conferences - where were the patients?
One new idea for involving patients in conferences is being tested at the NHS England/UCL Partners Future of Health conference in October. A Patient Jury, a panel of patients and carers, will provide comment and feedback on the presentations and workshops through the two days. I am excited to have been asked to be part of the Jury and am hopeful that it is going to provide a model for patients and carers to be integrated into the discussions at conferences. I will be posting a follow-up blog on my experience of being on the Patient Jury - to pass my final verdict!

Hearing it for the first time all over again

I live with several long term health conditions.

I am going to be living with these conditions for longer than it takes to get to the edge of the solar system (according the recent NASA Voyager announcement at least!)

Whilst I know that my conditions are neither terminal nor degenerative, I know that I am going to live with them for the rest of my life. 

I introduce myself to students I am teaching, fellow patients I support via Expert Patient Programmes and delegates I talk to at conferences as someone who lives with long term health conditions. 

It is even on my Twitter bio.

So why, when my doctor mentions that my conditions are "long-term" or that I am going to having to face this for the rest of my life, does it feel like he is telling me for the first time again?! Why does my heart break all over again, and all those emotions come flooding back?

What would I do if I was I was in charge of Day One at Medical School?

As a new university year is fast approaching, I have been thinking abut the messages that our future doctors will be getting on their first day at medical school in a few weeks time.

Thinking back to my first day, aside from the intoxicating mix of fear and excitement, the messages I remember were about how hard the next few years would be and how much science we would have to learn. I really don't remember there being much of a patient focus at all, although I know it was six years ago, and memory can be selective. The first time I met a patient was a few weeks in, in the setting of a GP surgery - exactly how you imagine a patient to be, receiving care. But since being a patient myself, I have realised that patients are more than just a problem to be cured, or a recipient of care, they are their own experts and have capacity beyond the walls of the clinic, to supporting every aspect of healthcare through their involvement. Shouldn't we be introducing our future doctors to this wider potential of patients as resources and colleagues in healthcare? And when better to do it than Day One? 

What would I do if I was in charge of Day One of medical school? 

Tilt Table Tests

For many reasons, I really admire Chris Hadfield, the Canadian astronaut who tweeted from the ISS the most spectacular images of earth from space, life on board ISS, and his rehabilitation. As a family, we caught up on his tweets each day over dinner. Then his posted this tweet....

Tilt table tests are the main part of a POTS diagnosis and any future investigations. Aside from our family jokes about which was a quicker way to get a tilt table test - sit on the waiting lists at Queens Square or qualify as a astronaut and spend six months in space.... Chris Hadfield became even more of a hero! 

My tilt table tests were to test the effectiveness of a potential new medication. I had to be "starved" as they put it from midnight the night before, so I enjoyed a bit of a carb fest for supper the night before! I personally prefer the word "fasting" or simply "not eating", but I guess "starving" is fitting with the torturous nature of the rest of the tests!

What if....

The "what if....?" question can be my worst enemy, in two different ways. 

I have been doing a lot of reflection recently (prompted by some #patientleaders conversations), and with considerable effort, I have steered clear of the heart-wrenching self-searching questions like "what if I hadn't gone sailing that day and had the accident?", "what if I hadn't decided to see the Chiropractor?" and "what if I hadn't got flu that weekend at ended up with GBS?". There is also the other side of looking back through "what if" glasses - what if I hadn't got to hospital in time? What if I had been to another hospital where they weren't specialists in my condition? Maybe I am pretty lucky after all?!

Bittersweet #tipsfornewdocs

I have never been a fan of the word 'acceptance', in that particular form, suggesting something completed. I much prefer 'accepting' which gives a hint of an ongoing process. The phrase "acceptance is a journey not a destination" is one I strongly believe. Some days I feel more accepting of my situation that others, and that is just the (bumpy) path of recovery.

Yesterday was one of those days where I found accepting my condition particularly challenging. Having such a health focused twitter feed, I noticed a fair few tweets using the hashtag #tipsfornewdocs and #changeover. We are at that time of year when newly qualified doctors start working as F1s. 

If I had not been ill and had to stop medical school, that would have been me. I would be preparing to don my stethoscope as Dr de Iongh. But illness got in the way. Although many of the tweets were full of advice to cope with the many physical and emotional challenge of being a doctor (try being a patient!!!), and I love my work now, I still felt pangs of jealously and anger. If only I hadn't been ill... 

Happy Birthday NHS!

My Twitter has been full of #NHS65 tweets with a range of emotions and sentiments. We all know the NHS has issues, but I also think it is equally important to step back from all the headlines and look at what we have to be thankful - and a 65yr birthday seems an appropriate time!

Dear Relapse: a love letter

This post has been the culmination of a few little seeds sown over the last few weeks...
A tweet at the end of May from the extraordinary Dr Kate Granger (@GrangerKate) made me start to think about what is positive about our health situations:
"This week has been properly amazing. And it was all made possible by having cancer. There is definitely a #silverlining to all this..."

This post is also inspired by a few letters I have read recently, from a doctor to a chronically ill patient, from a chronically ill patient to a doctor, and by far the most powerful, a video produced by the wonderfully talented and creative people from Flack in Cambridge, the audio of which we used in our Quality and Recover workshop recently.
It's not often you have to write a letter to something that is so close to you, but I feel that it is a great chance to explore the relationship I have with my relapses.
For references, my relapses are triggered by travelling and sudden neck movements, and consist of loosing movement in my legs (and left arm). It is frequently accompanied by headaches, blurry vision and crippling fatigue for four or five days.

Two weeks, two conferences, lots of ideas, but one thing missing...

The whole 'pacing yourself' self-management malarkey is all well and good, until really interesting events start to appear in your diary.... Then it all seems to out the window and I go to two conferences in 8 days and physically pay the price. But it is a price worth paying, as I have been lucky enough to enjoy two fascinating and stimulating days, meeting a whole array of wonderful and inspiring people, although one key ingredient was missing...

Does it matter how we acquire knowledge and expertise?

Knowledge and expertise are two very topical words in healthcare at the moment, but I want to challenge how we perceive and value them.

In the Collins English Dictionary that sits on my shelf, knowledge is defined as the 'facts or experiences known by a person or group of people', whilst expertise is defined as 'special skills, knowledge or judgement'. It surprised me to read that knowledge could include facts and experiences - the traditional paternalistic medical world seems to define knowledge as facts and dismiss experience. If knowledge can really truly encompass experiences, then my favourite term, experts by experience, is very much valid!

This wider definition of knowledge is slowly becoming accepted in the medical communities. I feel that we are moving away from the culture of "Doctor knows best". The knowing and knowledge to which that refers is very narrow (national clinical guidelines, drugs and tests, and the pathology of disease) but medicine is an art and science and a broad one at that. Accepting that knowledge covers both the facts, known best by the clinicians, and the experience, lived by the patient, we can turn the doctor-patient relationship into an equal one, and the perfect environment for shared-decision making.

Getting back on my feet

As I knew I would be, I am paying the price with a relapse, having spend a wonderful few days in Paris. But having had a very active few days and a bit of travelling, this relapse is lasting longer than normal. Still not out of the ordinary, or any cause for concern, but I am sitting here thinking how I can going to keep going through it, get back on my feet and feel recharged at the end...

When physiotherapy is more that just exercises

This week, Mental Health Awareness Week, the Mental Health Foundation is raising awareness of the positive effect of exercise and physical activity on mental well-being. Reading about this (it is really so much more than just endorphins!), I am beginning to realise that when the Chartered Society of Physiotherapy talks about "physiotherapy helps to restore function", it means more than the function of limbs, it means the function of me as a person, both mentally and physically.

I have been very fortunate to be seeing an excellent neuro-physiotherapist for the past nine months or so. I feel compelled to write about my time with her, our journey together, because I believe that out of all the healthcare professionals I have seen, her input and support has made the biggest difference.

The biopsychosocial model of disease

The biopsychosocial model of disease existed in my notes... an excuse to get out the colouring crayons and draw a diagram, but ultimately another collection of facts that needed to be digested then regurgitated in the summer exams, something to be fitted in around learning about the important stuff - the science.
But the biopsychosocial model has come alive for me recently, now I realise what an impact the later two components, psychological and social, can have on patients.

In the 1977 paper in Science, George Engel introduced the biopsychosocial model:

"The dominant model of disease today is biomedical, and it leaves no room within it's framework for the social, psychological and behavioural dimensions of illness. A biopsychosocial model is proposed that provides a blueprint for research, a framework for teaching and a design for action in the real world of health care."

Following some conversations on Twitter recently and from my own experience at medical school and now as a patient, I wanted to explore my thoughts on this model.

Shoosmiths Improving Care conference

I recently had the opportunity to talk on behalf of the Patients Association at the Shoosmiths Improving Care conference, held at the Kings Fund in March. It was a very interesting day debating the topical issues around care. I was the last speaker of the day and wanted to bring everything together, focussing on the patient.

 

Thank you to Shoosmiths for organising a stimulating day, the opportunity to speak and for producing the video above.

Do you believe in Silver Linings?

I recently spent a quiet Saturday night in catching up with a friend on Skype who was complaining about how expensive having a social life was in London. I half jokingly said "at least that's not a problem I have to contend with living with my parents in Dorset" (where a rare sheep breed is more common a sighting than a young person!)
"Silver linings!" She said!
You either have to laugh or cry, and I chose the former.

When I lost a job on health grounds over a year ago, I knew that there would be a silver lining somewhere, and I made it my mission to go and hunt it out, to make it as thick and silvery as possible. It took a while, but I found it!

Suffice to say, I believe in silver linings, just like Pat in Matthew Quick's The Silver Linings Playbook (the #spooniebookclub read this month). As a book, it was everything I needed it to be: escapism, a quick and easy read, thought-provoking and heart-warming.

#PatientLeaders

Every week there are new reports out looking at every aspect of healthcare and no matter how many long train journeys I have, I rarely manage to read them all. But last week was different - two very interesting reports were published that I read straight away! There was one from the Kings Fund, Transforming our health system: ten priorities for commissioners, that I was pleased to read, because it placed self-management as the first priority for Clinical Commissioning Groups (CCGs) - one of my personal passions.
My other passion was left unsatisfied by this report, as David Gilbert noted on Twitter....

... But a second report last week picked up where the Kings Fund didn't - Bring it on - 40 ways to support patient leadership, from the Centre for Patient Leadership

This report brilliantly documents the breadth and depth of work that patient leaders can contribute to. I was particularly pleased to read it because I was included on the last page, as a case study! It is an honour to have been asked, and to be included in the report.

Patient Leaders is a concept that is growing thanks to the brilliant and tireless work of David Gilbert (@InHealthAssoc) and Mark Doughty at the Centre for Patient Leadership. I would highly recommend their weekly Twitter chats on Tuesdays 8-9pm, using the hashtag #patientleaders.

Feeling stressed about being stressed!

Living with chronic illness is stressful. For many reasons.

Medical appointments . . . trying to hold down a job . . . the symptoms . . . missing out on life while trying to 'pace yourself' . . . fears for the future . . . knowing that being stressed makes the condition worse (cue downward-spiralling circle) . . . running out of prescriptions on a Friday evening . . . knowing you have a relapse coming . . . etc. etc. etc.

Very Inspiring Blogger Award!

Two very wonderful people (with equally wonderful blogs, Brain Lesion and Me and Pajama Daze) made my week this week - they nominated The Patient Patient for the Very Inspiring Blogger Award! I am delighted to accept the award, and very proud to be able to include the certificate on my blog!

Working with Chronic Illness

This post is the first guest post on The Patient Patient, and I am really excited to introduce you to Kristin, who blogs on Working Lupie, where I recently did a guest post for her on the healthcare system in the UK and what that means when you live with  chronic illness. It is pleasure have Kristin here on The Patient Patient discussing the challenges of working . . . 

Kristin here from Working Lupie. It is a pleasure to guest blog for The Patient Patient today. Anya and I connected over Twitter and have been sharing our experiences of living with a chronic illness. While our healthcare systems and diseases are wildly different, most of the day to day psychological effects and challenges are not.

Am I too good a listener?

"A good listener"

That is what we all want our doctors to be.
As patients we want to be listened to for practical reasons as well as the emotionally therapeutic benefits. There is a whole 'industry' to listen to patients, which, don't get me wrong, is excellent and much needed. But I want to talk about the listening skills of patients in this post.

From medical student to patient: my NHS Change Day post

I started medical school in 2007 wanting to 'make people better'.
I stopped medical school in 2010 facing the reality of not being able to get better myself, being ill and later being diagnosed with several long term health conditions.
This post is about my transition from being a medical student, to the other side - being a patient. There are many things I wish I knew about long-term health conditions and patients when I was a medical student. I hope that through this post, current medical students can become aware of some of these things and put them into practice as doctors themselves.

Life Disrupted: Getting Real About Chronic Illness in Your Twenties andThirties (Laurie Edwards)

Life Disrupted was the first book on the #spooniebookclub reading list, and an excellent choice!
Laurie Edwards takes you through the things that matter to young people with chronic illness, and the experiences that define being young and living with chronic illness. As an author, she is a great role model - she not only works, but has created work for herself using her experience. In a culture where you are either healthy and working or sick and not working, Edward's story is a breath of fresh air and a welcome reminder that it is possible to be ill and employed!

Her short chapters make the standard late night reading 'oh just one more chapter' even more tempting, but also provide digestible snippets on each idea. It isn't a novel, and doesn't read like one, yet it doesn't feel like reading a reference book either - I breezed through it, turning each page to see a reflection of myself and my experience.

My NHS Change Day Pledge

The 13th March 2013 is NHS Change Day - a national day where staff, managers and patients collectively improve the NHS through a number of pledges to change little things. I must admit I have only recently realised that patients themselves can be involved in NHS Change Day, but think it is only proper that we are. The NHS is often referred to as "our NHS" and leaders say it "belongs to everyone", which it does. As patients, we are in the privileged position to influence the NHS for the better (patient power!) and both as individuals and together, we have the potential to catalyse the transition to a more effective NHS that delivers better services for us more often.
So what can I do on the 13th March to add my little bit to this great big movement?

Keep Calm and Carry On (Self-Managing)

Being an Expert Patient Programme tutor is a pleasure and a privilege. It is a fundamental part of my own self-management - it gives me purpose and keeps me going. It is fantastic and moving to see people change for the better and their world open up to possibilities. I got an enormous amount out of the course when I did it, but when I recently finished a course, I found myself feeling very envious of the participants. They left on week six with such a moving wealth of optimism, hope and every thing else that comes with a fresh start and new leaf. Why was I envious?

Identity Crisis - who am I?

Who am I?

A Chiari?
The 'interesting case' in cubicle 4?
123456789 (my hospital number)?
My doctors 10 'o' clock?
A rattling collection of flesh, bones, co-codamol and Fludrocortisone?
Me?

Who is me anyway? To be honest, since becoming chronically ill, I am not really sure.

My identity is the thing I have grieved for the most since becoming ill. All of us are like jigsaw puzzles with lots of pieces that all fit together to make us who we are.Until a diagnosis of a long term illness is thrown into the box! Then, mysteriously those corner prices that are the foundations for the rest of picture to build from go missing . . . And then bits in the middle disappear.

The Anatomy of an appointment

This post is a bit of an experiment! This is a diary of the days and weeks before and after my annual doctors appointment with my consultant. I wanted to share it because "sense of perspective" is one of the hardest things I find about my appointments. I hope the doctors out there find it gives you another perspective on appointments. For patients out there reading this, I hope you find comfort in realising you are not alone in the all-consuming emotional roller coaster that envelopes each medical appointment.

D-Day!

 Having spent some time at medical school BC (before conditions!), I attended many appointments and didn't think much about them either before or after - it was just another 20 minute slot in a hectic day. . . As a patient, my perspective could not be more different - I have one appointment a year and it a really significant event, with a build up and aftermath to contend with and a barrage of emotions to go with it. This post is to illustrate what happens when I have a doctors appointment, my perspective, so here goes . . .

The Patient Patient: what's in a name?

As I blog as the Patient Patient, I have been thinking about what that actually means - being patient and being a patient - and went to dig out the dictionary on my shelf. I know in previous posts I have defended going into detail about semantics, but when the word 'patient' is so defining for me as a person (and many other people) I don't feel the need to apologise about the geeky wordy nature of this post!

Delving into my dictionary, the definition for patient as an adjective is 'able to wait without becoming annoyed or anxious, bearing or enduring pain with calmness, or without complaint' and in an archaic usage, it described 'one who is suffering', and the Latin origins are from 'one who suffers'. As a noun, patient refers to 'a person receiving or registered to receive medical treatment'.

As the patient patient what am I?

Measuring the subjective

Another post inspired by Radio 4....

I was listening to Women's Hour last week, and they were discussing heavy periods (something I thankfully do not suffer from) and the way they were classified as 'heavy'. Without wanting to freak out any male readers I may have, I feel compelled to explain this to make my point - a heavy period was measured by asking women to bring in tampons and pads and measuring the volume of menstruated fluid.

So why I am talking about a condition I don't have when I have plenty of my own to fill a whole blog?

A review of The Deepest Acceptance, Jeff Foster

I have recently read The Deepest Acceptance, by Jeff Foster, having been recommended it by someone whose book recommendations are always spot on. She had previously recommended Ingrid Bacci's The Art of Effortless Living (my review of which you can read here).

And this book was no exception. Although I can't say I enjoyed it - such books are typically no light read - I found it refreshingly honest. It was certainly thought-provoking and made some interesting points that I don't necessarily agree with but I still took a few things away from the book, even whilst I spent much of it thinking of situations that are the exceptions to, and contradict his statements!

Having read several self-help books since becoming ill, and being the recipient of much similar (unwelcome) advice from friends and family (as I am sure any patient will understand), there was a difference in this book - an acknowledgement of the situation, and of the reality of life with illness;

The Power of Twitter - Patient Power

This question was posed by Dr Black in her UCLLHL lecture today. These lunch hour lectures from UCL are often fascinating - see my post on Prof Barber's non-compliance lecture and the full schedule of future lectures here. She was talking about the power of Twitter (in lots of different contexts from fundraising to marketing, to socialising and researching), and left me inspired to be more creative with my use of Twitter. She also got me thinking about the power of Twitter and me being me, thought about it in the context of when you are a patient....

A Healthy New Year?

The saying may be just a phrase that everyone says to everyone else at this time of year . . . But wishing me a 'healthy new year' is particularly hard to hear this year. I know health is a subjective thing, but when you have a long-term condition, all the fresh starts of a new year are not going to make you healthy again! It seems a rather insulting comment from family and friends who I know haven't grasped the time-frame of my illness - I'm not going to get better! The time-frame of long-term health conditions is hard for people to understand, and their lack of comprehension and the comments that result are one of the most annoying things about LTCs. But can I find some truth or hope in the dreaded phrase - a 'healthy new year'?