Saturday 22 September 2012

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.



Exams - What are they good for?

I will be honest.  I hate exams.  I hated them when I was a student.  I hated them when I was a teacher.

There has been lots of discussion recently about what sort of exams we should have in the UK for children at 16. But there has been little talk about what are exams for? What is their purpose?

Most people would say they are there to test the student, to see if they know anything about the subject, even to see if they understand anything about the subject.

Others would say that exams can be used to provide a measure of the quality of the teaching.

Others may say they are there to measure the achievements of the school.

Maybe it is all three.

I do not think that exams are any good at finding out if a student can manage in the real world of work.

Exams are a one-off test.  They depend on the ability to remember stuff.

Do modern exams assess our ability to collect, assess and analyse information?

Are they important to employers? What do exams results tell employers about how someone will work and improve? I don't think that exams are much use for this but employers always ask for them and I guess, use them to short list candidates.

So I suppose we have to add to our list that exams are used by employers to assess candidates for jobs.

People say that continuous assessment is not a good way to measure the performance of students. They say that students get help from others students and their parents.  But isn't that what happens in the workplace. You use other people skills where appropriate, you bounce ideas off colleagues, you read lots of books and nick their ideas.

When we are working we don't work alone.  Yet we test students by forcing them to work alone.  We assess a two year course in 3 hours.   We use test that does not relate to how we normally work.

So we need to think about the purpose of exams first and then design a test that fits the purpose.











Tuesday 11 September 2012

Great idea - shame about the implementation

There is this great idea.  There is a sum of money available.

Everything is set up, application form printed, lots of publicity. GP surgeries informed of the scheme by email.

The scheme went live - patients and carers informed.

All they had to do was get a signature from a GP.  Oh so simple!

There was lots of interest and so lots of visits to GPs.

Suddenly a problem emerged.  The GPs knew nothing about the scheme.

The first they knew about it was appointments being filled to get the signature. Now we all know how hard it is to get an appointment with a GP. So any appointments being used up in this way, just for a signature was not good news.

There was another problem. Carers were turning up asking for the signature on their own. There were confidentiality issues as the patient was not there to give consent.

All in all a most unsatisfactory situation and the GPs got a bit fed up with it.

So why did it come to this?

Sadly it was the result of not doing things properly.  The Primary Care Trust should have involved the GPs at an early stage in the design of this scheme. They did not!

Result: a good scheme that would benefit those hard pressed carers is delayed.  There are irritated GPs, carers and the other people involved in the scheme.

All the evidence shows that when designing a new patient pathway, a new service or a new scheme of some sort you should involve everyone in the design of the scheme at an early stage in the process.

You also need to develop the implementation of the scheme at the same time as designing the scheme itself.

Typically redesign happens, then they think about talking to the patients and other stakeholders. Its too late then.  Involve them early often and in a meaningful way!

So what is happening? Hopefully they will talk to the GPs, sort out the form, sort out issues of confidentiality and then maybe, carers can get the breaks they deserve.

Cock -up or conspiracy

Saturday 8 September 2012

Like getting blood from a stone

It started like this.....


Our local Hospital Trust and the Primary Care Trust (PCT) decided that they needed to reconfigure services across two of its three sites. I guess that there are many reasons why they should choose to consider such a redesign. There is the European working hours directive for doctors, medical training requirements &  Royal College recommendations etc etc., all of which suggest that some services needed to be centralised on one site and some on the  other site.

A few years ago they held a public consultation on the general principles of such a change and it passed without too much fuss. Obviously they then went away and developed proposals on how the reconfiguration might look, A number of options were identified, including leaving services as they were. This option appraisal then went out for another extensive round of public consultation.

The consultation agreed with the preferred option (surprise!) but once the implications of the proposals were known and discussed in the press the public began to express their concerns about the effects of the changes at a local level. 

These concerns were a) that it seemed that one of the two hospitals seemed to be reduced in size and in services, b) its A&E becoming an Emergency Medical Centre, and c) the issue of poor transport links between the two hospitals, especially for those living in the villages outside the major towns.

There was an extensive campaign by the local press and a 'Save our Hospital' group held meetings.  Managers from the hospital Trust and the PCT attended these meetings, made statements to the press and a useful debate took place. One of the interesting statements made was that the changes were designed to improve the quality of care and had nothing to do with money.  "Its all about quality".

This got me thinking about how we , as members of the public and patients, would know that the changes have achieved their desired outcome, that of improving the quality of care.  As a scientist and part time 'change manager' I realised that we needed a baseline measurement of the current quality of care provided by the existing services.  So I asked the question.

The County Council Health Overview and Scrutiny Committee was being updated on the reconfiguration and so I asked a question about getting quality information into the public domain.

The important part of the question was:

"Given that the aims of the changes.....are all about improving the quality of care ...can the Hospital and PCT provide the current level of quality of those services in a form that the public can understand."

Their answer in full (names and details removed to protect the innocent) (from the PCT director of communication and engagement) was:

"Quality reports are routinely considered at meetings in public of the PCT cluster Board. These look at issues such as waiting times, levels of hospital acquired infections and delayed transfers of care. In relation to the changes proposed by the programme, a 'benefits realisation' performance dashboard is being developed. This will contain a number of indicators which will be monitored to ensure that any changes are producing a better experience and better outcomes for patients.  This will look at factors such as patient satisfaction, mortality rates, length of stay and admission and readmission rates of these services which have been changed."

Now I know I am just a member of the public but I did spend two years teaching science to GCSE students and I reckon that comes under the category of 'this student did not answer the question'.

Now in my role of 'a stone in the shoe' I had a email conversation with the Trust representative ('the messenger') which resulted in no improvement and so I was allowed to re-ask the question at the next Overview and Scrutiny meeting .

This is the next answer, given by a senior clinician from one of the two embryonic local Clinical Commissioning Groups:

"At the moment a large amount of data is collected the Trust.  This includes data on length of stay, readmission rates and mortality rates. However the way in which this data is currently analysed and reported reflects the current arrangement of services not the proposed new reconfiguration. The Hospital Trust is currently undertaking an exercise to analyse the data to reflect the changes and to determine benchmarks from which outcomes can be monitored. Once this is completed the key indicators will be published and monitored in the public domain".

Once again it seems to me that they have avoided answering the question. In fact they seem to have missed the point about establishing the quality of the current services, entirely. Yet at the same time they say that the way the data is analysed at the moment does reflect the current services!  If this is so they should be able to give some indication of the quality of the current services.

Each time I go over the answers I see more confusion and lack of information.

It seems to me common sense that the baseline for measuring quality improvements should be taken before the changes are implemented and are an essential piece of information that any organisation should use when managing change. 

The more I look at what has happened over the last few months the more concerned I am about the ability of the local health services to understand the quality of service that it provides for the local population. They do not seem to understand the process for monitoring the change process either!

We are being told to choose the health care provider that gives the best quality care but if they cannot give us the information on quality how can we choose?

Or is it that they do not want to tell the public what is happening?





Thursday 6 September 2012

Why?

Why have I called my blog "A stone in the shoe"?

You know what it feels like when you have a stone in your shoe? Every step you take it irritates, you can feel it, it niggles! You try to wriggle your foot and hope it moves to somewhere else in your shoe.  Then you try kicking your feet in an attempt to move it.

Finally you have to stop, take off the shoe and give it a good shake .

Even then once you put the shoe back on you find the bit of grit is stilll there.  Or is it another piece?

Off with the shoe
Off with the sock
shake it all about

Put them all on again and suddenly you are comfortable.  Walking is a pleasure again.

Well.

That is what I feel I am to the local health authorities. An irritant, a stone in the shoe that just will not go away.

I want them to remember that there are patients involved in the 'businesses' that they run.

I want them to remember that they need to provide evidence that the changes they implement will benefit patients (and staff).

I want them to remember to manage change properly.

I want them to design and redesign patients pathways involving patients (and staff) early and often in the process.

I want them to build the process of implementing the new designs into the design process, not tack it on afterwards.

I just want them to do things properly.

So I ask questions at board meetings and Council Health Overview and Scrutiny committee meeetings.

I persist until I get an answer that members of the public can understand AND that answers the question.

Its not easy.

So I try to be that stone.  Always there.  A reminder to do things properly, in an evidence based way, using language that people can understand.