Don't just talk - do something.

Have you ever talked about your GP surgery over dinner, sitting in a café, standing in the checkout at the supermarket….?

Well you are not alone!

A Million people a day use their GP surgery and most of those will have something to say about the experience.

Most of those experiences are good.

However sometimes us patients have ideas about how to make the experience of talking with a GP or practice nurse better.

There can be problems with the phone service, making appointments isn’t always easy, seeing your own GP can mean waiting weeks, no privacy at the reception desk, access can be difficult for those with disabilities and as for car parking…!

So instead of talking about things on your own – join your Practice Patient Participation Group (PPG) and do something about them.

A patient participation group is a bunch of volunteers who want to make a difference.  They work with the practice to gather information from patients and to make suggestions about improvements.

They look at the surgery and ask:

What works well?

What works less well?

Are there services that are not provided but would benefit patients?

They also run an annual patient survey, hopefully the questions are set by the patients not the surgery.

Sadly General Practice is going to have to change. Being part of your PPG is one way you can help to make sure we keep the best bits of General Practice

Your voice on its own is very quiet.

But the voice of the many people in the PPG is much louder and will be listened to.

Please join your Practice Patient Participation Group.

Ask at reception or look on the practice website.  Maybe there is a social media page?

How Health and Wellbeing Boards can involve the public

It is difficult to get the public involved in decision making about the big, strategic issues in Health and Social Care.  We are much more interested in things that concern us at a personal level.  

The Health and Wellbeing Boards that exist in shadow form in all local authority area are intended to promote the health and wellbeing of all residents in their area. Through the production of a needs assessment they will set the priorities for health and social service commissioning so that the best possible outcomes are obtained for local people. 

Or something like that anyway. 

The members of the board come from the local councils, health and social service managers and one member from Local Healthwatch. They are expected to involve the public in their work 

So I thought I would give them a few of my ideas, a few basic principles on how to involve the public. 

1. The Health and Wellbeing Board must know what it means by 'involvement' AND the purpose of such involvement.
2. The board must inform the public about its ideas on involvement and the purpose of public involvement.
3. The board must inform the public about what it can and cannot do with the results of the involvement process.
4. The board should use lots of different methods to involve the public.
5. The board should involve the public at an early stage in the development of ideas and plans.
6. The board should involve the public all through the process of developing plans.
7. The board should try to ask specific questions rather than vague ones.
8. The board should think and act 'locally' (small scale).
9. It will be more productive to look at single issues, conditions, treatments or groups of patients.
10. Use existing networks, service user groups, charities & voluntary sector organisations.
11. Face to face, informal events tend to be more successful than formal ones.
12. Go out to people, go to the workplace, the schools, clinics  shops, clubs & wards.  Do not expect people to come to you.
13. Use language that people understand, no jargon, and ask short questions.
14. The board must feedback to the public what information in gets through involvement and how it uses it.
15. The board will need to inform people and educate them about how decisions are made and how evidence is used.
16. Read the literature and research on patient and public involvement.
17. Patients and the public are different and so they will need different approaches .
18. We, the public will NOT be 'representative'.. 

 Any more ideas would be welcome.  Feel free to contribute.

A brief history of patient involvement in NHS

The new Health and Social care Act 2012 was sold to us as putting the patient at the centre of everything the NHS (in England) does.

I have spent many years collecting information on patient and public involvement and I would like to share some of the things I have filed in boxes and piles of paper.

Way back in 1974 the Community Health Councils (CHC) were created to give the patient a chance to have a say about the way the NHS was run.  Later other groups replaced the CHCs and as part of the HASCA Local Healthwatch will take over that role (in April 2013).

I started to collect quotes when I joined our local CHC in 1992.

Here are a few:

1991
"A consumer responsive NHS will treat its consumers with respect and will enable individuals and communities to influence the health service purchased and provided on their behalf"
A Regional Strategic Framework - Towards 2000.

1991
"The government recognises that...involving people more at both strategic and operational levels in discussions and decisions about options and priorities.... will help them achieve their objectives"
The Health of the Nation June 1991

1993
"Patients and the public must have a say in health service decision making"
Purchasing for Health July 1993

Zooming on a bit

1998
The NHS must be more open and truly accountable to the public.
- involving the public in decision making and monitoring process
- involving patients in service planning, development and implementation
A First Class Service. Quality in the new NHS 1998

2001
"Duty to involve and consult patients and the public in service planning and operation and in the development of proposals for change"
Health and Social Care Act 2001 Section 11.

Its all sounding a bit familiar isn't it?
So moving quickly on....

2012
Section 14U.
"Each Clinical  Commissioning Group (CCG)... promote the involvement of patients and their carers in decisions which relate to;
- prevention or diagnosis of illness in patients
- or their care and treatment."
Section 14Z2
"CCGs must make arrangement to secure that individuals.. are involved in
- the planning of the commissioning arrangements by the group
- the development and consideration of proposals by the group for change in the commissioning arrangements where the implementation of the proposals would have an impact on the manner in which services are delivered or the range of services available."
Health and Social Care Act 2012

So what, you say!

My point is that various governments over the last 20 years have said a lot about the need for patients and the public to be involved in decision making at various levels in the NHS.  The fact that they are still saying it suggest that it has not yet happened across the country in a meaningful way.

Will the embryonic CCGs really involve us patients in commissioning decisions?

Is it all rhetoric?

Do patients really want to be involved at a strategic level in decision making about health services?

What do we mean by 'involvement' and what do the CCGs mean?

Involvement, to me, is an active thing, it means that patients and the public participate in the development of new patient pathways and how services are changed. It is about involving the public in decisions about which services to commission and which services not to commission.  It is about asking us for our opinions on setting priorities. It is not just asking us for our opinions after the changes have been developed or priorities set.

The question remains though,  how many patients want to be involved in such difficult decisions?

Added in Sept 2017

The latest version of patient participation is Co-Production. This is an idea that originated in the States where whole communities got together with the authorities to develop facilities or services.