Simon Heng Column

Among the changes the Labour government has brought to health
and social care, the idea of effective patient and service user
involvement and choice is, or is likely to be, the greatest
cultural shift of all. It attempts to turn us all from passive
recipients into experts in our own conditions, with the right (or
should that be responsibility?) to contribute towards our own
well-being, both through our actions or through our participation
in making decisions.

Although professionals in the field recognise how dramatic an
effect these changes will eventually make, it is clear that many
service users and carers are being left behind in their
understanding of what their role is meant to be in the new
vision.

For example, when we have been discussing health services in our
service user groups, many people have struggled with the recent
structural changes. Many service users regularly use primary care
and acute services but still find it difficult to distinguish
between the roles of acute and primary care trusts. Many people
still expect to be told what to do by health professionals. They
still see the NHS as a seamless, if monolithic, service
provider.

In the same way, the re-organisation of social services
provision is running the risk of involving service users and carers
without ensuring either a full understanding of their roles, or a
true commitment to the process of change. I don’t believe that this
is for any ulterior motive, but because there is a lack of
understanding of the mentality of dependency which has been
ingrained in service users, and a lack of an effective voice for
carers, for such a long time.

Carers and service users may have complained long and loud about
unresponsive service provision that doesn’t meet their needs but
for many a state of learned helplessness set in a long time ago.
This means that they will find it difficult to engage effectively
in shared decision-making, particularly if first efforts don’t reap
immediate rewards.

Has anyone put any thought into retraining service users and
carers, as well as the professionals?