Report review: NHS England guidance on involvement and participation

| Linda Hutchinson

This month NHS England published two linked guidance documents on involving and engaging people.

The two guidance documents

Involving People in their own healthcare covers involvement of people in their own health and care. It has sections on definitions, methods, why it is important, practical actions CCGs and NHS can take and examples of ways to measure involvement.2

Patient and public participation in commissioning health and care focuses on patient and public involvement in health services more generally. It covers involvement in commissioning, the principles of participation and then a section each on 10 actions Clinical Commissioning Groups (CCGs) and NHS England can take to embed involvement in their work. The longest of these ‘Assess, Plan and Take Action to involve’.

Both documents use quotes and links to examples and other resources. Each has the legal duties summarised in an annex. The mix of practical examples and legal duties is helpful and the presentation style with colour and cartoon illustrations makes for an easy and digestible read.

Which raised for me the question about who the documents are for. Their subtitle is Statutory guidance for clinical commissioning groups and NHS England and indeed the relevant section of the National Health Service Act 2006 which states that ‘NHS England must publish guidance for CCGs on the discharge of their duties under this section’ is duly quoted. It all feels a little circular and bit perfunctory.

The missing mindset

There is something about involvement and participation that is missing at the moment. Despite having it written in statutes, it is seen as peripheral and an add on. Publications such as these have a feeling of ‘dumbing down’. I wonder if cartoons are used in documents describing financial duties on CCGs.

In reality, as Rob Webster acknowledges in his Forward “Effective participation comes from our mindset and culture”. Exactly. If the mindset is there then the actions follow easily. And if the mindset isn’t there it is easy to spot the paternalisms of guidance such as these.

By co-incidence, Roy Lilley recently picked up on the theme, inspired by someone working with children with a range of severe learning disabilities. Her approach to planning for the very complex needs of the children is to ask the family. As Roy says:

It’s simple … just ask.

If you ask, you then have to listen to what is said. Listen carefully. We wrote here recently about the lost art of listening. I searched for the word ‘listen’ in the documents – 4 times in 32 pages in one, 6 times in 62 pages in the other. Lots of ideas about involvement and participation but not necessarily a sense that this is about listening.

Another co-incidence was the wonderful blog by David Gilbert last week. It created a telling juxtaposition – a frank description of what it feels like to be a patient leader trying to buck the system. A system which produces these kind of documents – doing it’s best but not really getting it.

My recommendation is to read the two documents but then to ask yourself – do I want to ask and do I want to listen? If yes, then you ‘get it’ and the rest is easy.

Photo by Viktor Forgacs 

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