Why don't health care organisations involve patients more?

Ros LevensonThe King’s FundISQua Conference, Paris 2010

Why don’t organisations involve and listen to patients more?

If it’s all so beneficial, why doesn’t it always happen?So many reasons, it’s almost possible to over-explain

Capacity and organisational readinessStaff often say they want to listen, but they don't always know how to do it, or they perceive obstacles in the way of making it happen

Organisational readiness – the organisation has to be prepared to make changes

Individuals play a big part, but corporate support is needed

‘The best is the enemy of the good’

Importance of an incremental approach – better to do something than nothing

Concerns about ‘representativeness’

Concerns about reaching out to individuals and groups who have tended to be excluded

Risk aversion

Fear of the unknown

Fear of opening the floodgates – but patients are usually very moderate and practical in their suggestions for improvement

There is a lot of information, but trying to take it in is hard. It can be a bit full on but that is not their

fault. Maybe there should be somewhere you can go for explanations as doctors don't have time. There are nurses, but you are not the only person she has

to see.

They are very busy and a bit short-staffed. They can't spend a lot of time with you – but I didn’t

expect that.

I appreciated the opportunity to talk to the nurses, and to make appointments to clarify a particular

doubt or uncertainty.

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Resources

But small things make a big difference, and changes need not be expensive

Concerns about staff time

Lack of identified budget, even for small improvements

When I had my assessment CT they had a huge fish tank that was empty. Either

get rid if it, or fill it with fish!“

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Disempowerment of staffInstitutionalisation, leading to lack of awareness of shortcomings in service and defensivenessLack of local ownership of initiativesOveremphasis on what is measurable, rather than what is significant

Patients and staff need to be involved in setting the agenda, not just responding to it

Impact of targets (a UK issue in past few years)

Lack of support for staff making changes

More could be done to support staff. When we go to managers and say we

can't cope, we’re sinking, it’s been, like, just get on with it. So what’s the point of

saying anything? You are seen as a troublemaker.

It can be overwhelming as a lot of what you are seeing is quite sad. You can get used to it – you get a bit toughened up.

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Conclusions

Not about blaming staff Both staff and patients can be disempoweredNeed to make it easier for organisations and individual staff to involve patients than not involve them