Research and your local NHS

We need to push the NHS to make sure that research opportunities are explained to patients.

Please cut and paste the following and check with your local Trust and new Clinical Commissioning Groups to make sure that they are complying with their duty and reporting activity.

All NHS Trusts have a duty, through the NHS Constitution, to promote opportunities for patients to take part in clinical research studies. 

The National Institute for Health Research provides support for the delivery clinical research trials in the NHS in England, and there are now new measures of how individual Trusts are delivering on that duty across the different therapy areas.

THE KEY REPORTING AREAS are

1. How many clinical research studies the Trust took part in last year 2011/12? And currently?

                                                                                                                                                    

2. How many patients it recruited as a Trust?

3. How much research is being done across a range of medical conditions?

Clinical Commissioning Groups (CCG) are committed to promoting patient recruitment to and participation in research according to section 4.2.2 of the authorisation process.

A statement we might expect to see from CCGs 

“We declare that our CCG understands and will comply with our statutory responsibilities regarding promoting research; and that we are committed to following the policy of ensuring that the NHS needs the treatment costs for patients who are taking part in research funded by Government and research charity partner organisations”

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.