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!!!

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!