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!

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!

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. 

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)

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...

"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.

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.

Ethnography

Of all the talks I heard at last weeks conference (Tackling Long-Term Conditions: Health & Well-being), the ones with patient stories stood out in my memory. It was recommend by another speaker that every NHS/DH meeting should begin with a relevant story to ground the following discussions and focus the minds.
One talk at the conference was all about Ethnography and using patients stories as a formal tool for work relating to policy, strategy and other NHS business. The speaker from Ipsos MORI described ethnography as 'walking a mile in someone else's shoes' and demonstrated how effective it can be in healthcare. He used the examples from NHS Kidney Care (see here - Improving Choice - Listening to Patient Stories: Bud Abbott) around carers. Ethnography shows their world, their challenges, their routine and their network and how care fits into that. Comments can be very poignant and effective at highlighting the issues and needs.
To refer back to a quote from Philip Pulman, "true stories feed the mind with information and the heart with hope and strength", and ethnography is a formal version of stories that if created well can have a significant and wide-spread impact on policy, strategy and campaigns.

What makes us healthy?

Ezra Klein (Washington Post Wonk Blog) has created a great infographic on what makes us healthy - quite interesting comparison with what we spend on being healthy . . .

A re-focus of healthcare funding on behaviour could have big impact! Although harder to achieve, changing behaviours could create lasting improved health?

A very thought-provoking infographic!

Realising the need for Self-Management

At the Tackling Long-Term Conditions conference last week, I visited the stand for The COPD Manual. Developed at the Central and North West London NHS Foundation Trust, it is an excellent example of a self-management resource.
The COPD Breathlessness Manual is a 'self-management intervention to reduce hospital admissions and improve psychological well-being.' A condition specific self-management programme, this looks at breathlessness, and provides patients strategies to cope better when the symptoms occur. What is interesting about this project is the way it came into being - it was created primarily by psychologists, with specific input from other clinical teams such as OT's, doctors, nurses and physio's. It is not surprising perhaps that the need for a self-management course was recognised first by the psychologists, but it worrying. Why do clinical doctors not see self-management as a feasible option for patients?
The benefits of self-management really do benefit doctors - this project has reduced A&E attendance by 50% and hospital admissions by 63%. The project is effective, easy to replicate and simple. I hope doctors can spread the word. Psychologists have already taken to it, and the results are there!

What needs integrating in 'Integrated Care'?

This video is the best example that illustrates what 'integrated care' actually means, and how big the integrating challenge is (keep an eye out for the red circles!).

It shows the power of stories to back up and ground policy ideas, such as 'integration' which has been hijacked by the NHS-management language. What do we need to integrate in 'integrated care' and what would that integration look like? A key phrase that is emerging is that "the patient perspective should be the organising principle, not organisational  processes" (Don Redding, NHS Confed blog), and this video shows the patient perspective! It is an excellent story, video and idea.

Source: The Young Foundation, Ageing Well Innovation Programme

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!

Green Therapy

Yesterday I was lucky to be a meeting which included a 20 minute presentation from the Magdalen Project on "Green Therapy".

A entirely new concept for me, green therapy has an enormous range of benefits to offer and could become a tool in our toolbox to help patients with a range of long-term health conditions (physical and mental). The therapy encourages physical and mental well-being through "care farming" - which involves animals, plants, food and fresh air! All the activities promote confidence and independence - two sentiments often lacking with these people. Under the national organisation of Care Farming UK, these projects are being developed across the country. The slogan of 'helping people grow'  is very apt.

This is a really refreshing therapeutic activity to have found out about! I hope funding can sustain it to benefit more people in the future.