Power of information

Today (25 May 2016), courtesy of NHS Leeds West CCG (thank you Chris Bridle), I attended the 19th Patient Information Forum Conference. The theme was “The Power of Partnership” so I was delighted to partner up with Chris and present a poster on the Leeds Patient Leader Programme.

We didn’t win the poster competition (it’s all about taking part apparently) as this title was claimed by a more ‘heart-tugging’ entry on support for Child Bereavement – deservedly so.

Nonetheless, during the presentation I received some very good comments about our programme, ranging from “this is a ground breaking programme” to “this is not ‘fluffy bunny’ stuff. The stand out comment for me was ‘it tells you exactly what you have to do and the benefits you get from proper patient engagement’ – from the Head of Clinical Informatics at NHS Wales who asked me if I would be willing to go and talk to NHS Wales about the programme! I said I would (even though it was in Wales J) but that perhaps one of our professionals would be more appropriate – watch this space as we may be going international!

“Was it worth going?”  I hear you ask. Well, for a start, I was surprised at how much personal anecdote came from supposed professionals who should be far more objective. And I have to admit some of the items were not relevant to me as a patient leader. There were good bits though.

I learned, for example, about the two information standards which impact the health and care information that I feel we are bombarded with. Did you know that from 1 April 2016, anybody providing information related to health or social care should make “reasonable adjustments” to make it accessible for disabled people – including those with sensory impairment. Now there is a challenge for all our providers! This is a mandatory requirement under the Accessibility Information Standard.

The other standard ‘The Information Standard’, is voluntary, but all providers of care information are encouraged to follow it and become ‘Certified’ allowing them to display the ‘Health and care information you can trust’ logo on their publication. From now, I will not read any other so that’s another challenge for Chris and his colleagues!

I attended one of the breakout case study sessions about the prescribing of film-based information to change patient behaviours. These films, put together by the person who also produces content for BBC’s Children in Need, uses patients to describe the ups and downs of their journey through their respective illness.

The idea is that if you have a particular illness, your GP (or other health care professional) prescribes a film for you and find out more about what you could expect over the coming months and years due to your health condition. You can watch the films at your convenience, direct from the interweb, on the device of your choice. For those people who are not connected to the internet, the participating GP practice can provide an iPad for you so that you can watch the film in the comfort of the surgery. They are ‘streamable’ not ‘downloadable’ so that the producers can keep them current.

The use of these by primary care professionals is an absolute no-brainer (even my wife, who is well retired by now, uses an iPad for information retrieval!). In my role as patient leader I’ll be pushing NHS Leeds West CCG to encourage all their practices to use them with immediate effect!

So, was it worth going – a big YES to that: I learned a lot, was bored a bit – that’s life I suppose? Oh, and the lunch was delicious!

Kevin Bray

Patient Leader