The novelty of a short term health condition - from the perspective of someone with long term health conditions

A few weeks ago I had an inner ear infection, labyrinthitis. The worse of the symptoms were only for four or five days, but it lasted about 3 weeks in total. It was a short-term health condition. This meant that many aspects of those few weeks were in stark contrast to my day in day out experiences of long-term health conditions.

Tate Modern, Mattise and self-management

A few weeks ago, I treated myself to the Matisse Cut-Out exhibition at the Tate Modern. My interest with the exhibition began with a quote of his I caught in a weekend paper, saying "only what I created after the illness constitutes my real self: free, liberated." Fascinated by the idea that someone could create their best work when ill, I booked a ticket.

Partnerships are possible

I've recently had the privilege of working in a great collaborative partnership with two different professionals: Alf Collins to write an editorial in the BMJ on the Oldham Commission; and Trevor Kettle to co-design and co-deliver workshops on patient and public involvement in healthcare professional education at Southampton University.

I know there is a lot of talk about what it feels like when patients and patient leaders aren't able to work in these kinds of environments, so I wanted to document what is feels like when it does work - to prove it is possible!

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. 

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.

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...

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!

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.

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.

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?

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?

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 . . .

Mapping Emotions in Experience Based Design

Care pathways are the backbone of a patient's story. They reflect the practical aspects of a patients story, but not the experience. The experience-based design approach has been created to return service design focus to experience, in the hope of improving that.

"using experience to gain insights from which you can identify opportunities for improvement"

 In order to design based on experience, those experiences need to be captured, understood, improved and measured.
There are touchpoints or 'moments of engagement' between patients and services - what emotions do they create? Mapping those emotions through the process of the episode of care can be very enlightening.

For example, my care pathway is through several different consultations and referrals including neurosurgeons. That sounds very reasonable. But at each of those points, there were emotional reactions. Being referred to a neurosurgeon is no everyday matter, and neither are the appointments - emotions of fear, anxiety, stress built up. While a referral to a physio prompted me to feel slightly more hopeful and motivated to help myself. But its not just the engagement with the healthcare professionals. In fact, more often than not, it's the letters and the calls to the secretaries that induce the most anger and frustration - the most extreme emotions for me!
By looking at my somewhat convoluted pathway through the NHS in such detail, the intricacies of what adds up to an overall 'good' or 'bad' experience can be seen.

This whole concept is explained really well on this NHS Institute for Innovation and Improvement presentation.

What is Well-being?

'Well-being' has become such a buzz word in health nowadays, but what does it actually mean? 

That question stumped the audience and panel at the Tackling Long-Term Conditions conference in London last week (30th May). It is hard to find a single answer for something so personal, but without considering what it means, how can we develop healthcare systems that promote it? 

The concept of well-being came about in the middle of the 20th century when medicine had made significant progress in overcoming disease, and the idea of positive-health developed (Breslow, 1972). In response, the World Health Organisation re-defined health as 'physical, mental and social well-being, not merely the absence of disease or infirmity'. In a medical world set around pathology and science, that was hard to digest. Despite the campaigning of mental health and social care charities, the medical world can still be narrow minded on occasions with their definition of health. For over 40 years, definitions have been studied and analysed (Quality of Life and Well-being: Measuring  the benefits of sports and culture: Literature Review and Thinkpiece)

The haze around the definition of well-being might be responsible for the difficulties in measuring it, and therefore integrating it into modern healthcare practise. 

Cradle to Grave (Pharmacopoeia)
British Museum

For me, well-being incorporates every aspect of my life, health and illness. I think it can be summed up really well with the aid of one of my favourite pieces in The British Museum in London, Cradle to Grave (Pharmacopoeia). As a patient at the nearby National Hospital for Neurology and Neurosurgery (UCLH) round the corner in Queens Square, the British Museum offers a haven to loose myself in on those stressful appointment days - either killing anxious hours beforehand, or dealing with the aftermath of, appointments. Pharmacopoeia is one of my favourite exhibits in there, and I make sure to visit it every time I'm there. The exhibit is a collection of all the pills, injections, prescriptions, implants, scans and inhaled substances that an individual is given as a patient through their life. Interspersed between the medical paraphernalia are photographs giving a glimpse into the life of that patient as a person. Spanning several meters, it is a tribute to the medicalization of modern life. But it has a deeper meaning than that. . .

The images and souvenirs that punctuate the medical sotry tell a story about an individual, with friends, family, hobbies, emotions and history. This illustrates exactly what well-being is for me - the narrative that overlays our medical history.

My own Pharmacopoeia would have a large number of MRI scans, steroids, neural analgesics, nerve conduction test results, physio reports and many more things I have yet to have! But what I need to make sure are also included are an (at least) equal number of great memories, photos of smiles and laughter, souvenirs from days with friends, family parties and scenes of love and warmth. While there were plenty of these to balance the odd paracetamol BC (before conditions), I need to make sure I have enough to punctuate the drug/scan-filled years AD (after diagnosis).... I need to look after my well-being in the midst of psychical illness - a challenge I am going to rise to!