It’s the patient experience, stupid!

I have always thought that the main role of local Healthwatch was to collect the experiences of patient using the health and social care services.

But one of their board members is quoted in the minutes of their November board meeting as saying

 “Healthwatch Bucks could make a business case for the integrated collection, analysis & reporting of patient feedback across health and social service provision in Buckinghamshire”.

http://www.healthwatchbucks.co.uk/sites/default/files/board_minutes_11th_november.pdf

So why does this board member think Healthwatch Bucks needs to make a business case to do what it is contracted to do anyway?  By using the words ‘business case’ he is suggesting, in my opinion, that they should seek funding to do this job. 

They should be doing it now as part of their primary function, not asking for more funds!

I wonder if he has seen what Healthwatch Buckinghamshire says on its own website.

This statement is included as part of their ‘What we do’ section on the Healthwatch Buckinghamshire website

“Collect data and stories about the good and the bad, so we can use evidence based criteria to influence commissioning and policy.”

They expand on this theme in their ‘What will Healthwatch do’ section of the website:

“….seek the views of people about their needs for, and their experiences of, local care services.”

“Examine the quality of local health and social care services.”

“Make the views of local people known, and reports and recommendations about how local care services could or ought to be improved, to people responsible for planning, providing, managing or scrutinising local care services.”

http://www.healthwatchbucks.co.uk/

Even the CCG has something to say on the issue:

In their draft paper on the Review and Development of our (AVCCG) Commissioning Intentions they say:

“(the CCG will) Work closely with Healthwatch to expand the feedback we receive on patient experience from direct observation and feedback from patients, clinicians and the public including those from hard to reach communities. “.

http://www.aylesburyvaleccg.nhs.uk/wp-content/uploads/2013/10/GB-2013-10-4b.pdf

It is high time Healthwatch Buckinghamshire stopped talking and got on with its primary function.

Go out and collect the experiences of patients and carers of health and social care service provision.

Healthwatch - enagaging with the public

Our band new Healthwatch Buckinghamshire recently advertised its first public meeting.

Here is part of the advert:

"Do you use any of the health and social care services in Bucks? Or do your friends or family use them?

Do you want to see them improved in some way? If so then this event is for you.

Healthwatch Bucks is the new consumer champion for our county. It will give users and communities a stronger voice to influence and challenge how health and social care services are provided in Bucks.

Come along to find out about Healthwatch, the concept, context, vision and structure. Find out about the many different ways that you could get involved. Together we can improve things – see where you fit in and how your contribution could make a difference.”   

It seems to me that the new organisation has not learnt the lessons from previous efforts to engage with the public on health care.  Public meetings do not work unless there is a specific topic of interest.  

If they want to engage with the public in a meaningful and effective way then they should hold meetings with clear objectives and achievable outcomes.  They need to think inventively and smarter.  They need to do things differently.

If they want to publicise the "concept, context, vision and structure' they could do that more effectively by circulating information by email, post or even using social media!

How about this as a topic for a meeting: What are your concerns about the high Mortality Rates at Buckinghamshire Healthcare NHS Trust? What are your experiences of being a patient at the hospitals?

That might create some interest and they could then show us how Healthwatch Buckinghamshire could influence the care provided locally and how we could provide input into the investigation.

So this is a plea to Healthwatch Buckinghamshire to do things differently. Be innovative. Be bold.

How can the public hold Clinical Commissioning Groups to account

I think that 'holding to account' means that the public must be confident that the Clinical Commissioning Groups (CCGs) are answerable to the public and patients for the decisions they make on our behalf.

The sorts of decisions they will be making (maybe they have already made them) are:

• What healthcare do we need.
• How much.
• The quality of the care
• Where the care will be delivered and by whom.
• How long will it take to get treated.

There will be over 200 CCGs.  Our is a small one with only 190,00 people and a budget of about £200M.  Others will be much bigger and responsible for very large sums of public money. So it is crucial that they use this money for the benefit of their local population and get value for money.

So how can we hold these organisations to account.  It will not be easy as individuals to do so.  Organisations of this sort can hide behind a number of barriers. They use the Freedom of Information Act to delay answering questions.  They can also use the idea of 'Commercial Confidentiality' to avoid giving answers about the value of contracts, especially with private healthcare providers.  They also use jargon to confuse us.  Lastly one of the ways to ask them questions is at board meetings held in public and that isn't easy for many people. It isn't much fun standing up in from the board and holding them to account.

However there are a number of ways that the public can make sure they spend our money wisely and on healthcare that will benefit us.

Ask questions at meetings

CCG boards will have to hold their meetings in public and publish the board papers online.  Go to meetings and ask questions. CCGs will also hold other so called 'engagement' meetings so please go along and ask awkward question. 

Join your Practice Participation Group (Patient Reference Group)

Each GP surgery should have a group of patients, perhaps as an virtual group, who support the practice in many ways. They can ask questions of the GPs who in turn can ask questions of the CCG.  Our CCG intends to have a Patients Forum with one person from each practice participation group on it. Exact details are current unknown. The patients will need to set the agenda not the CCG.

Service User Groups

If you have a long term condition join the service user group/support group or set one up.  They may be able to ask questions about specific services as they are often considered as 'experts'.  These groups are often used when services are being redesigned or changed. 

Local Healthwatch

These groups will be taking over the role of the Local Involvement Networks on April 1st. They will act as the patients champion  and should be seeking the views of patients and the public about the health and social care services. They will be monitoring the quality of services and holding the CCGs to account if the services are not benefiting patients. These groups will be as new as the CCGs and will take time to become effective. Anyone can join a Local Healthwatch and support their activities.

GPs

Our CCG intends to have an 'accountability forum'.  Each practice will have a GP on the forum and their role is to hold the CCG to account on behalf of the GPs and the practices. Even more reason to get involved in your practice participation group so you can influence the GPs.

Local Health and Wellbeing Boards

This is a joint Council & CCG body that is responsible for strategic thinking and priority setting for health and social care. A lay person from the Local Healthwatch will be a member. CCGs should be answerable to the board to show it is matching commissioning to the health needs of the population. How it will hold the CCGs to account remains to be seen but it could be quite powerful.  

Health Overview and Scrutiny Committees

This is a Council committee that monitors the commissioning and delivery of services and can hold the CCG to account.  The meetings are in public and you can go along and ask questions.

CCG Governance procedures

CCG are required to hold meetings in public, publish their papers online and to publish the methods they use to make decisions.  We should make sure that they actually do use those methods when making decisions about our healthcare. There will be much talk of the use of 'evidence' and we need to make sure they use all the evidence and analyse it in a consistent manner. 

Lay people on the CCG board

Each CCG is required to have two lay people on the board and one of those must act as 'the patient and public involvement' champion.  Find out who it is and make sure they act on our behalf.

NHS Commissioning Board

The new NHS reform act makes sure that the CCGs will be accountable for their performance to this national organisation.  But there is nothing in the act to make the CCGs accountable to us.

Monitor

The CCGs will be accountable to this national organisation for their financial performance.

Conclusion

Those of you who have read my previous blogs about patient involvement might notice some similarity to this one. I feel this is inevitable since the two processes of involvement and accountability are two sides of the same coin.  Both rely on good communication and trust. The same limited number of organisations are going to be active in the involvement process as well as the accountability process. 

Meaningful and effective involvement of patients, at an early stage of decision making, and in a sustained manner throughout the process will enhance the trust that the public have in the CCGs.  The accountability process will follow naturally from the involvement of patients and the public in decision making. 

There seem to be very few ways in which individuals can hold their local CCG to account. So it looks like you will need to join one or more of the organisations mentioned above if you want to make sure the CCG does what it is meant to do and 'make no decision about me, without me'.

The trouble with joining an organisation is that you hope that the person representing you is able to stand up to the CCG board.  Will the CCG take more notice of that person than the opinion of an individual?

Lets hope that the evolving CCGs will be different from the old PCTs. and that they will act in an honest and transparent manner so we can be assured that they are working on our behalf. 

  

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.

How to improve healthcare in your area

How to Improve Healthcare in Your Area.

Patient and Public Involvement in Healthcare

I find that patients are, on the whole, only too happy to discuss their experiences of using the health service. In fact often it is hard to stop them talking and I cannot take notes fast enough!

Yet they find it hard, as individuals, to get their opinions listened to by Hospitals, PCTs and Social Care providers and commissioners.

Perhaps part of the problem is the bureaucracy and apparent inflexibility of these organisations. They like to do things in formal ways, by holding consultations and engagement meetings. Most patients prefer a face to face, informal conversation.

Patients also want quick feedback.

Then there is the language!

Public and Patient Involvement (PPI) has its own jargon, like many of things that happen in the NHS.  There is ‘engagement’, ‘consultation’ and ‘involvement’. They seem to mean different things to different people. In fact to most patients they mean little. They are words that managers use and are found in all the strategy documents and reports published by hospitals and the government.

Patients just want someone to listen to them and then to take some action so that services are provided or improved. One of the things that patients feel is important is to have some feedback from the organisation about how it is using the information it receives from patients.

This is what the government has said (see bullet point 6) about giving patients a louder voice through the Health and Social Care Act 2012:http://www.dh.gov.uk/health/files/2012/06/B3.-Factsheet-Greater-voice-for-patients-300512.pdf

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Involving Individual Patients

Patients, at an individual level, have always been involved in managing their own health.  This took place, either through self-management of their illness or during the consultation with a health professional. Between them the patient and doctor or nurse will work out what is best for the patient.

There are times, however, when the patient would still say “What do you think, Doc?”  But in every consultation there should be some form of joint decision making about what should be done to improve the patient’s health and wellbeing.

There are other ways that patients, as individuals, can influence how healthcare services are delivered.

Choice.

We all, as patients, have the right to choose where we receive our hospital treatment. The hard part is finding out which hospital provides the best treatment for our condition and for us as a person. But by making a choice we are influencing those who make the bigger decisions for all patients. So ask your GP about the quality of the service you need.

Patient Advice and Liaison Service (PALS).

If a patient or carer has concerns about something then one way of letting the organisation know is through the PALs officer.  This service has been around for a while now and the PALs officers are there to provide information about services but also to sort out minor concerns and problems that patient’s experience.

The PALs officer is able to pass on the concerns to senior management who should sort it out or provide explanations.

Regular reports are made to the hospital board on the number and types of issues that come to the PALs department.  The idea is that this provides information on services that may need to be improved in some way.

Writing to MP and local press.

This is always a good way of getting the attention of the Chief Executive.

Ask questions at Hospital Board meetings.

This is not easy for some people and I suggest that you write down your question and ask the chairman to read it out.

Ask questions at your local Council Overview and Scrutiny Committee.

Again some people might find it easier to ask the chairman to read out your question.

Complaints.

People are often hesitant in making formal complaints. They are concerned that if they cause a fuss something might be written in their notes about being a ‘trouble maker’.

However every complaint has to be investigated and a report is seen by the Chief Executive. A sub-committee of the board will also see the investigation and should make sure that actions are put in place to ensure that no harm comes to future patients. Regular reports are made to the board in public on the causes of complaints and the actions taken to stop similar things happening again.

Sadly, sometimes the only way to make sure that services are improved is by making complaints. 

The NHS needs to make it easier for people to make complaints. There are organisations, such as ICAS (see below) that support patients, their carers and relatives, in making formal complaints about the care they have received.

The Independent Complaints Advocacy Service (ICAS). ICAS provides advocacy support to people who wish to make a complaint about the service - or lack of it - that they have received from the NHS.

Finally patients and carers can also influence the way their healthcare is provided by joining one of the many groups that exist in the community and becoming part of a network.  Networks of people tend to have a louder voice than an individual.

There are lots of organisations and groups in the community that can help patients and members of the public to influence the authorities. The hard part is to find them and then to find the time to be active.  Often local councils will have lists of such organisations.

Join your local GP surgery Patient Participation Group.

If you have a long term medical condition you could join the local user group (or set one up). These groups are often used by the authorities to provide ideas for improvements in specific services such as stroke, diabetes, mental health, disabilities and other conditions.

There are local & national charities and other voluntary sector groups who support patients and carers and who can start campaigns to improve care services.

Foundation hospitals will have members who elect a board of Governors who can influence the executive board of the hospital.

Hospitals and PCT (and hopefully the new Clinical commissioning Groups) have patient experience groups or forums.

Online groups.
There are plenty of online groups that can both provide support for people with long term conditions and others like Patients Opinion (https://www.patientopinion.org.uk/ ) who provide a way of raising your concersn in a user friendly way.  Hospitals do respond to these online comments so hopefully they also act on them.

There is the Local Involvement Network (LINk), an independent local volunteer led responsible for collecting the views of the patient and passing them onto the authorities.  They also have the right to inspect NHS and social care funded organisations providing care. The LINk will evolve into Local Healthwatch in April 2013.

Local Healthwatch will have a greater involvement in this sort of activity and will be recruiting members to undertake some of the work. Look out for information in your area.

Other voluntary sector organisations take an interest in health and social care issues.  The Women’s Institute in Buckinghamshire recently ran a campaign to improve stroke services. http://www.bucksfwi.org.uk/index.php/wi-campaigns/bucks-activities.html

Influencing the Clinical Commissioning Groups

The government has placed great importance on the need for the new Clinical Commissioning Groups (CCGs) to undertake “Meaningful engagement with patients, carers and their communities.” as part of their authorisation process.  They are also required to “…to involve the public on any changes that affect patient services.”

This means that they should be asking all people about their experiences of the health care they have received and also asking how they can be improved. Ideally patients and the public should also be involved in designing the changes to services as in this example:

http://www.improvement.nhs.uk/audiology/presentations/national_audiology_conference_july2010/Workshop2_presentation.pdf

It will be interesting to see how CCGs engage and involve individual patients in decisions about patient services. In an ideal world GPs will have time in a consultation to discuss with patients and carers the issues and priorities that face the CCG.  Then they should have time to collect together all the comments made during the working day and pass those onto the CCG. The CCG then will look at all the comments from all the GPs, analyse them to help their decision making.

In my experience I fear that scenario is unlikely!

So ask your GP and your local Clinical Commissioning Group how they will involve the patients and the public in any changes that affect patient services.