Health Matters | Paul Corrigan's blog

I remember, in the autumn of 2010, writing about an important paper produced by 10 major patient groups and suggesting that perhaps this would prove to be a more important document than anything else that was going on at the time with regard to the wrangling about the Health and Social Care Bill.

Over the last 18 months too many  of us have been consumed with the structural and political dance that became the Health and Social Care Act, but luckily these patient groups have kept their eye on the ball and concentrated on real patient-centred care. A few days ago they published the latest instalment of their work.

I really commend the entire 21 pages of the document from From Vision to Action available from the Kings Fund and patient group web sites. If we are very lucky and these patient groups hold their nerve, then in those Clinical Commissioning Groups that have the ambition to become active commissioners patient health care could be radically improved.

Today I want to pick up on one aspect of this report that follows on from yesterday’s post about the importance of developing care that improves health outcomes.

Of the five issues that the report feels are important, the first concerns,

Measurement monitoring and public accountability   

and they say,

“…the NHS is awash with data about clinical activity and to some extent about clinical outcomes and patient experience. Information about whether people are accessing the service and how they are experiencing the sorts of services we prioritise in this report are much more limited”

How true. The important point is that the data has not been created to allow us to hold the service to account in ways that patients want and need. Patients are asking for this to change and for there to be some recognition that we really need to know how the NHS is performing from the patients’ point of view.

The report makes some suggestions for the kind of information that will clearly reflect the patient experience:-

• The percentage of patients with long term conditions reporting that their health professional worked with them to produce a written document recording decisions about managing their health condition
• The percentage of health care professionals undergoing regular reviews of their skills in supporting shared decision making
• The percentage of patients with long term conditions successfully completing a self-management programme
• The percentage of patients who feel that services are available to them at points of crisis and know how to access them
• The percentage of patients who feel that their emotional, psychological and practical needs were fully discussed during the care planning process
• The percentage of patients or carers reporting that they were as involved as they wanted to be in their care and treatment.

This would be a significantly different set of indicators to the ones collected at the moment. Yet they represent what modern medicine needs to understand about how the service works with its patients.

Each of them underlines the point that I was trying to make yesterday. If for example patients do not, to quote the first suggestion, report “that their health professional worked with them to produce a written document recording decisions about managing their health condition”  then the fact that they cannot remember engaging in such a discussion will mean that the work, even if it had taken place, would not have been effective.

Professionals will recognise that the care planning document must at least be a part of the memory of the patient for it to have a long lasting impact on their health care.

As I noted yesterday, this places any measurement of outcomes in the hands of the patient. Communication from the health care professional in, for example, a long term condition must become a part of their daily lives if it is to be effective in impacting on their welfare.

The argument goes something like this.

If you have a long term condition, the key phrase is ‘long term’. On many occasions you will have it for the rest of your life.  In an average year you are awake for about 5800 hours – and for all of that time you are self-managing your condition.

Everyone with a long term condition self-manages all the time. They might be doing this well or they might be doing it badly, but this is the reality of their waking hours.

Most people with long term conditions will see a health care professional for, at best, 5 out of those 5800 hours. If those 5 hours work very, very well they will have an impact upon their capacity to self-manage the remaining  5795.

This potentially increases the efficacy of the patient’s self-management over those 5800 hours.

What might this mean? Let’s say that the efficacy of self-management over waking hours is improved 2% by the impact of the skilled 5 hours that health care professionals spend with them in the year. They work hard in those five hours at understanding the life of the particular patient and how health care could improve their capacity to self-manage for the rest of that year.

A 2% improvement in self management for 5800 hours would be a major impact.

But to achieve that – to take this first indicator as important – the patient must be able to “report that their health professional worked with them to produce a written document recording decisions about managing their health condition”.

If the patient cannot remember whether the health care professional actually did work with them then the efficacy of that work is very greatly diminished.

In this way outcomes will only be successful for most health care for people with long term conditions if they are actively involved in their health care over that year.

It seems worthwhile then to be able to hold the NHS to account for the success or otherwise of how that communication is experienced by the patient.