Excellent website which provides a good analysis of the News Behind the Headlines

Bad Chairing

With the recent publication of Ben Goldacre's excellent book "Bad Pharma" I thought I would look out a piece I wrote some time ago about 'Bad Chairing'.

Bad Chairing - The10 WORST ACTIONS and SAYINGS

For those people chairingmeetings who wish to make a complete and utter hash of engaging and involving the public or what you may view as "those poor, pathetic, indolent, sufferingsouls" I wish to offer this sound advice which I have witnessed andlearned over the years. This is the ‘how not to do it’ guide which a small minority still do...

I have divided these as the 10ACTIONS and SAYINGS of the World's Worst commandments for involving the publicin meetings.

ACTIONS

·      View patients and public as from another planet

·      Make no contact beforehand with the patient or member of the public

·      Don't introduce yourself

·      Avoid introducing anyone at the meeting

·      Don't make eye contact

·      Ignore any indications of the patient/public wanting to speak

·      Ensure all papers are in NHS speak

·      UAWAG - Use Acronyms Without A Glossary

·      Don't have Patient Issues as an Agenda Item

·      Make no reference to patients in the Minutes

SAYINGSand MANNERISMS

·      You're still alive??? (Thanks to Bec, a colleague)

·      I had an minor op once so I know what it is like being a patient

·      It is all very complicated and you won't understand

·      Ah, yes, well, but....

·      I would never have had that treatment

·      You are only a patient and only see one small side

·      Raise your eyebrows at all patient/public comments

·      Use 'them' and 'they' when talking about patients and public

·      Use hospital humour - 'off for frying' rather than radiotherapy

·      Smile but look with pity in your eyes

One might assume that somethingsimilar to these lists have been circulating for years and must have formedpart of a training course for a small minority of professionals. This couldtherefore explain the regularity with which these behaviours are exhibited.

However, THANK YOU to all of YOU who help us in a million ways!

Tick Boxing

As a patient, I have been involved in many meetings (far too many for my own good, perhaps).

A lot have been good but a few have been more about tickina box. 

I attended the meeting Educating4Patient&Public Involvement the other day when someone used the words 'Tick Boxing'. It sounded like Kick Boxing

Are there rules...

I have begun some possible rules below...

1. Invite the person to a meeting and send them to the wrong room

2. Invite the person and don't tell them when or where the meeting will take place

3. Avoid sending the agenda or papers before the meeting

4. Don't tell the person anything about the purpose

5. Consult people after you made a decision to tell them what you have decided

6. Include Involvement on the Agenda as the final item and with any luck you won't reach it

7. Leave everything to the last minute and demand a quick response 

8. Don't have any principles other than self interest

9. Forget to offer to pay any out of pocket expenses

10. Never say thanks or acknowledge the contribution

11. Ignore all patient groups, communities and patient advocates

12. Make sure that you write up this in a highly positive light - especially your contribution!

Rather than call these the Bloomsbury Rules I suggest that we say that we are unwilling to be part of such Foolsready Rules.

Now, how might you feel in that boxing ring?

Bad Pharma - by Ben Goldacre

Excellent new book by Ben Goldacre which provides many great examples as to why it is vital to have patients and the public interested and involved in all aspects of research. It is well researched and cogently argued.

Bad Pharma by Ben Goldacre
Published by 4th Estate ISBN 978-0-00-735074-2
The link is Amazon UK - http://www.amazon.co.uk/dp/B008PCVGKI/ref=rdr_kindle_ext_tmb

Poem

How many post it notes will be written?
How many consultations will be held?
How many workshops, courses, events?
How many flipcharts, mind maps, thoughts and ideas?
How many more meetings, committees and boards?
How many agendas, minutes and matters arising?
How many video, telephone, webinars will take place?
How many holds in my diary, things to do lists?
How many emails, reminders and texts?
How many days wasted talking....


when we could just have got up and turned on the light!

Performance

Performance – reflections on the Olympics

Attitude! – There was something about the positive mind set especially amongst the Paralympians. A non-acceptance of can’t do, a willingness to take on a challenge, get on and do.
As patients we are often viewed or written about as victims of a disease so there is a message there about living every day to the full despite any limitations. Like many others I dislike the dreadful term ‘survivorship’. Living with and beyond an illness is far more acceptable so being actively involved and engaged in all aspects of my heath are the keys: Challenge – Aspiration – Achievement!

Goals! The setting of targets is a crucial factor in sport. This applies to us as patients. Our goals are shared decision making, better treatment, the best evidenced based care developed through quality research! But we also need to be clearer about what we are targeting at any point we get involved: Purpose – Impact- Benefit!

Approach! The manner in which the athletes worked together and shared training facilities across both Olympic Games. The Cycling Team was 'one' team, sharing the same resources, coaches and leadership resulting in a rich display of medals and personal and world records.

As patients the issues we face are faced by many other patients yet we too often stay together with others of the same disease. It is the sort of tribal behaviour that we accuse the health professional of doing. Being actively involved is being involved and research is research: Commonality – Shared-decision-making - Partnership

The Building Partnerships course, bringing the public and researchers together, was developed by Macmillan it is a great example partnership (Well, I would say that as I am one of the facilitators!!!)

So…..

How do we inspire people - enable their capabilities?
How do help people develop knowledge and skills?
How do we build from people’s own experience?
How do we help people achieve their ambitions?


Programmes on TV such as Grand Designs, Celebrity Master Chef and Strictly Come Dancing illustrate how people can learn very fast, take on exceptional challenges especially if they have a passion or dream, desire and especially a plan.

People want to know about Research!

The National Cancer Patient Experience Survey is now published 

Thanks to the Carolyn Morris and others at the NCRI Consumer Liaison Group, Professor Matt Seymour and the NCRN for getting questions about research asked...

Of the 33% of patients who were asked whether they would like to take part in cancer research - 95% were glad to be asked.

Of those who were not asked to take part in research - 53% would like to have been asked.

I believe that these figures clearly illustrate that patients are keen to talk about research, participate in studies and will need information to help. ten years ago only 1 cancer patient in every 27 was taking part in a research study now it is nearer to 1 in every 5 patients. 

Now that we have asked these questions of cancer patients we need to be asking other patients about whether they are offered the CHOICE of taking part in research.
However, even for cancer patients it is far from a perfect picture when you look beyond the headline figures.


A more detailed summary of the responses to the research questions...

Discussion of Research

There was a significant variation in the proportion of patients saying that taking part in research had been discussed with them. Scores ranged from 39% (breast cancer) to 15% (urological cancer).

Results from individual Trusts show that there are significant variations in the proportion of patients saying taking part in cancer research was discussed with them. Scores in Trusts ranged from 14% as the lowest score to 62% as the highest Trust score.
The 20th percentile threshold is 24%; the 80th percentile threshold is 37%.


Patient Attitudes


53% of those patients who said they were not asked, said that they would have liked to have been asked; 47% said they would not have liked to have been asked. Findings by Tumour Group There was a significant variation in the proportion of patients saying said that they would have liked to have been asked. 

Scores ranged from 64% (brain / CNS) to 47% (skin and urological cancers).
 95% of those patients who had research discussed with them said they were glad to have been asked; 5% said they were not.

Findings by Tumour Group 

There was some variation between cancer types but statistical tests indicate that the differences between cancer groups are not significant overall.
Findings by Trust Results from individual Trusts show that there are significant variations in the proportion of patients saying they were glad to have been asked. 

Scores in Trusts ranged from 85% as the lowest score to 100% as the highest Trust score.
The 20th percentile threshold is 93%; the 80th percentile threshold is 97%.

Other key findings from the survey are that patients are:  

Given clear answers – 91% (91% in 2010) of patients saying that they received understandable answers to important questions all or most of the time from their Clinical Nurse Specialist;

Treated with dignity – 94% (93% in 2010) of patients saying that they were always given enough privacy when being examined or treated;

Seen quickly – 83% (81% in 2010) of patients feeling they were seen as soon as necessary by a hospital doctor;

Treated with respect – 83% (83% in 2010) of patients feeling they were told sensitively that they had cancer;

Given a choice of treatment – 84% (83% in 2010) of patients being given a choice of different types of cancer treatment before their treatment started.