Changes to the law; but why involve people in their care and their services?

The simple answer to that question is involvement leads to satisfaction and yet we know that about half of all hospital inpatients say that they are not as involved as they want to be in decisions about their care. Those who are not as involved in the decisions as they would like to be are less likely to understand the purpose of their medicines or other interventions and are unlikely to understand the problems or side effects of treatments. This will affect adherence and outcomes. We know that when people feel fully involved in treatment decisions that approaching 90% are satisfied with services and this falls to only 50% when people feel excluded from the decision making process (http://www.pickereurope.org/).

The draft NHS constitution hasn’t occupied much space in the papers, waves or indeed this blog in comparison to, for instance, the Richard Review or top up payments Lord Darzi’s promise is “you will be involved”. The constitution says patient should have the right to full information about all available treatments, the right to be involved in discussions and decisions about their care. That fits with Standard One of the Renal NSF: “all children, young people and adults with chronic kidney disease are to have access to information that enables them with their carers to make informed decisions and encourage partnership in decision-making with an agreed care plan that supports them in managing their condition to achieve the best possible quality of life.

It sounds good or does it sound like motherhood and apple pie?

The NHS Act 2006 section on the “duty to involve” came into force this week on 3 November 2008. This duty requires NHS organisations to involve users of services in planning and provision of services, the development and consideration of proposals for change in the way services are provided and decisions affecting the operation of services. Trusts should be taking this statutory obligation seriously, the kidney patients and KPAs should be encouraged to participate to ensure that people with kidney disease have a voice in this process.

The NHS Next Stage Review says “you will be involved. The local NHS will involve patients, carers, the public and other key partners. Those affected by proposed changes will have the chance to have their say and offer their contribution. NHS organisations will work openly and collaboratively”.

The duty to involve is not just an organisational duty. It is also a responsibility of each of us in the health services and that’s not just clinicians. People want information about the services they use, people want information about the options available to them, people want information about what their condition’s likely to mean for them and what the medicines and other treatments might and might not do. Some of this is available in the excellent Kidney Research UK DVD “living with kidney disease”, we are beginning to put information about services on NHS Choices but there’s no substitute for a face to face discussion with individuals – explaining out patient appointment procedures, explaining why a change in diet can be beneficial or engaging in a discussion about the uncertainty of future events. Involvement leads to satisfaction, satisfaction leads to better outcomes, it’s our duty to involve people in decisions about their care.


Real involvement: working with people to improve services