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A new year - what can change?

Chief Executive Maeve Hully

January is traditionally a month for resolutions, new beginnings, for fresh starts and doing things differently.

Through our many conversations with patients, clients, carers, and health and social care professionals, we know that there is a real appetite for doing things better.

Transformation of our services needs to happen. Some of this transformation is already underway, but change takes a long time. We are promised that change for the better is on its way.

How should people who use the services be genuinely involved in these changes and have a stronger voice in the design and planning of services? These are frequently asked questions - and there are no easy answers.

In January, people from across the health and social care system are taking part in an event called Future Search, which will address these and other similar questions.

This group will be made up of clinicians, managers, service users, policy makers and others. It will be an important event that will result in a vision commitment and action.

One of the many questions that will be asked on the day will be: “If starting with a clean sheet, how would the citizen/service user voice be provided to the health and social care system?”

Through the work we have done, the many people we have spoken to and the people we have supported through the complaints process, we have a lot of information and evidence already to bring to this discussion.

Have you got any suggestions on how best to do this? The more people we hear from the more we can represent your views.

You can give your thoughts as comments at the end of this blog or email them directly to  before Monday 15 January 2018.

I look forward to hearing from you.

I hope you have a peaceful 2018. 


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Previous comments ...

Brendan 15-Jan-2018 at 10:51 hrs

How valid are the figures with which we are supplied>

22/12/17 Family member discharged from hospital after his second stay in December for treatment of an infection.
28/12/17 Readmitted with infection.
05/01/18 Discharged
09/01/18 Readmitted with infection. A&E wished to send him home because of lack of beds. His wife refused pointing out that his notes would show that similar bouts of infection had developed into life threatening situations.
10/01/18 Bed found.
12/01/18 Still in hospital with infection.

Today is a Friday and he did not get discharged so hopefully it will be definitely established that he is clear of infection this time before discharge.


Derek Birrell 15-Jan-2018 at 10:25 hrs

Northern Ireland has made little progress in introduction of coproduction. Bengoa report describes coproduction as more than consultation involving equal partners and co-creators,meaning in policy design,deliverry,,evaluation and research and training.The rationale is on the value of the knowledge and expertise developed as a user of services. The Delivering Together paper aftef Bengoa gives a commitment to formulating services on the basis of coproduction and co-design but gave no plan to implement this. Coproduction would require progess to a system of co-management and co-governance to replace the current highly centralised and hierarchical system. Two major initiative would assist in achieving coproduction, A change from the structure of a small number of large quangos with appointed members to plan,deliver and monitor services. Secondly a clear role for PCC to promote and support the growth of user-bsased organisations to take a more major role. Compared to GB few exist in Northern Ireland


Doreen Patton 12-Jan-2018 at 19:50 hrs

The word "coproduction" must be replace. It is totally misleading and could be very off putting. But typical gargan for the NHS. When are they going to call a spade a spade? When you do go to a meeting it is impossible to follow what is being said because of abbreviations and gargan. This is a very dangerous practice and gives rise to misunderstanding, mistakes etc. PPI may be successful in small pockets but I do have doubts about the overall success.


Doreen Patton 12-Jan-2018 at 19:49 hrs

The word "coproduction" must be replace. It is totally misleading and could be very off putting. But typical gargan for the NHS. When are they going to call a spade a spade? When you do go to a meeting it is impossible to follow what is being said because of abbreviations and gargan. This is a very dangerous practice and gives rise to misunderstanding, mistakes etc. PPI may be successful in small pockets but I do have doubts about the overall success.


Carol McCullough 01-Jan-2018 at 18:31 hrs

The importance of partnership in shared decision making between patients, carers and Health Care Professionals involved in personal care cannot be underestimated. People are coproducing personal care daily in difficult circumstances when ill or in a caring role. However, the word ‘coproduction’ has been hijacked to describe service design.

With regard designing services generally or in areas where it’s necessary to have experience of actually living with illnesses and using related services:

Involvement of cohorts of patients, carers, families and members of the public needs to be fair and in line with current Personal and Public Involvement Rational, the PHA Role, Strategy and Standards. There currently is variation between the methods used to bring service users together, some better than others, but it should be very obvious why the worst of all scenarios, e.g. organisers/ professionals hand picking service users to participate, can never be genuine PPI and will damage PPI/coproduction.

Legitimate PPI/ coproduction is dependent on:

Equality of opportunity.
Building networks rather than restricting them or encouraging siloes where the same people are turning up time and again.
Embracing diversity while ensuring the right person is involved depending on what their experience is and the type of PPI in question.
Measuring outcomes
Avoiding any possibility of cronyism or discrimination (this will also help protect ‘involved’ staff and service users).

These are dependent on adequately publishing opportunities for involvement and understanding the background of people who do become involved. It can only begin with a fair system of recording a person’s details through use of a ‘standard template’. During a partnership training course completed a few years ago myself and two other participants drew attention to the need for a database of people who are interested in involvement in improving services. This is not the same as the Patient and Client Council Membership Scheme. Rather it is where people submit an actual expression of interest in more active involvement. The database might be held by the PHA and shared with the PCC and Trust Leads. People would be responsible for submitting their personal details on the template provided, updating the details, or asking that their names be removed if they no longer want to participate at this level. It would not be difficult to achieve.

When opportunities for PPI or coproduction arise, an e-mail should be circulated to everyone on the database and significantly ALSO publicised widely on the PHA/ PCC websites and on social media.

If a person is interested in involvement the Expression of Interest form could be provided along with a response to relevant questions e.g. Why do you want to become involved in this work? What do you feel you can contribute to this work? Applications could be assessed more fairly; outcomes measured with greater accuracy.

This would not only ensure greater equality of opportunity but help increase networks, diversity, skillsets and also, when needed, help pull together the correct people who can contribute most to the PPI in question.


Bob 30-Dec-2017 at 20:51 hrs

I use technology for banking; I use technology for booking holidays; I use technology to speak with my utility providers; I use technology to give me my pulse rate, calories burnt, weight; blood glucose etc I can ask Alexa to give me other health information. I have control over what I have to manage in my life. My health should be no different.

We had a great regional telehealth people better control of their own conditions......if it had have been utilised better by making it available to more patients and not so controlled by professionals looking after their own self-interest and not wanting to work differently. Another example of time-limited contracts, projects, pilots (or whatever you want to call it) and wasted resource without mainstreaming the things that worked into a scaled-up service.

Remote consultation. Monitoring vital signs. Pulling people to the services when there is a real need based on clinical change. Signposting. Advice. Self-care. As a citizen...I don't want to be in an ED or even a GP surgery....there has to be a way to manage the non-urgent stuff.

Get interventions further up-stream......screening, health and well-being and give me the tools to keep well or at least check occasionally to ensure that I am keeping well.

I think the public are up to doing things differently. Change the faces around the table and shift the power......from the HSCB.


Rhoda Walker 29-Dec-2017 at 16:52 hrs

Make patient voice representatives an integral stakeholder at the front end of EVERY programme or service. At the blank page point - not when trusts think they know what needs to be done and have already drafted a proposal!

Move the engagement level so it is as close to patient empowerment as possible.

Allow patients to have some control over the provision of services which best meet their needs. Expert patients often have a greater understanding of their own needs than their gps or disjointed consultancy services.


Belah 29-Dec-2017 at 15:01 hrs

The services belong to the people. It is therefore important that arrangements are put in place to enable ordinary people to have the information they need to support them to be fully involved in decision making. For too long much of the information has been withheld by decision makers. Also the timeframe for making decisions and implementing them must be shortened it takes far too long to make things happen in health and social care.


Gwyneth 29-Dec-2017 at 13:22 hrs

The working person who works in a different town from their GP location struggles to use the service. This is because you have to ring for an apt on the day but you have already left for work and then you try to make an apt for the following morning but you are not allowed, guy gave to ring again the next morni g but with no guarantee that you will get one!!! GP services make so many changes without consulting or informing their patients. You only find out when you ring up to avail of a service only to learn it has changed