Linking local, regional and national Patient Voices – Kate Ansell

Guest blog by Kate Ansell (Chairman – West Midlands PV&I Group)

As a keen ambassador for Public Voice from people who are actually using our health services – rather than their representatives from various charities and societies – I have been giving some thought to how it might be possible to link the local voice with the national voice and vice-versa. And, how the national Discovery, Gather and Assembly model would also work at Local & Regional level.

If NHS Citizen has a responsibility to bring national and local issues to the attention of the NHS England Board, then its composition has to be carefully considered. Too often in the past the “inclusion” of patient voices has been from CEOs or Directors of National Charities, to the exclusion of the real patient voice. This makes the decision of what/who to ‘involve’ in order to achieve genuine insight a little difficult. How might this be resolved?

The 12 Regional Senates could well provide the answer in respect of Public Voice membership. If each has a Citizens’ Senate – in the manner of the East of England model, then they could nominate two of their Patient Voice members to join NHS Citizen – 24 people who would bring with them local issues, local concerns, best practice, failing practice – the very topics that NHS England “needs to know”.  This is where the local Discovery, Gather and Assembly model could be used very successfully.

It is important to note here that the EoE Citizens’ Senate is made up of genuine patient voices gathered from a broad and transparent recruitment process that was overseen by the patients and carers themselves.

Equally the NHS England Board needs to disseminate information about national issues, service changes, new initiatives and responses when needed. Again how much simpler it would be to use these Regional Citizens’ Senate voices to take the decisions back “home” and cascade the information out to their communities.  When either party wishes to discuss, for example, major changes to service provision, the Regional Citizens’ Senates could be asked to nominate an additional Patient Voice who has more detailed knowledge and experience of that topic.  They would just attend for that particular meeting.

By having a basic 24 people on NHS Citizen this allows for the “must haves” of Healthwatch, Public Health, etc., whilst always trying to keep the composition to “essentials”.  For a change it could mean that the Patient Voices would be in the majority!

I have also been giving thought to the practicalities of the current NHS Citizen proposal. The role of NHS Citizen is to monitor/scrutinise the NHS England Board. However, they will be hard put to do so if they only meet every six months. For instance our West Midlands Voices find it hard enough to keep up and on top of the work programme of our Council with their quarterly meetings. Inevitably “things” happen in between. Similarly, so do the patient voices who monitor the CCGs. Perhaps the timescale for meetings might need to be looked at. Is there some way of “between meeting” contact which is meaningful, or should patient voices be included in work/discussions which comes out of the meetings, and which are not necessarily projects?

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6 replies on “Linking local, regional and national Patient Voices – Kate Ansell”

  1. Kate,
    Thanks for your considered contribution.
    Here at Involve we have been thinking about some of the issues you have raised, in particular around how to create the assembly membership. Important questions need to be answered such as how will members be selected? How will a broad representation be ensured? How will marginalised voices, such as those belonging to people with special educational needs, be valued and included? How many people will participate? How long will people serve as members? How can we make effective use of offline and online Gather spaces as our main pool from where to draw Assembly members?

    One of the selection methods we have been considering is a quota system, with various seats allocated for civil society groups representing various interests, seats allocated for patient voice representatives and seats for unaffiliated citizens. We liked your idea of drawing a percentage of members from the Citizens’ Senate, particularly if one of NHS Citizen’s aims is to join up patient voice across the system and avoid replicating the work of other organisations such as Healthwatch.

    One issue to keep in mind is how to ensure (and create incentives for) citizen participation beyond the usual suspects (who might well be more prominent also within Regional Citizens’ Senates and other patient voice groups). To this aim we are also considering other methods of selection, for example randomised selection as well as stratified sampling (to ensure all groups are equally represented), or a mixture of the two. Each method has its own benefits and trade-offs, which we will be exploring in more detail over the next couple of weeks in preparation for the next design workshop where these ideas will be tested and debated.

  2. Hi Kate
    Thank you very much for posting this.
    Obviously I am a keen ambassador for regional Citizens’ Senates as one way to connect up public voice across the regions and link it to the work of NHSCitizen. They could be an easily identifiable and accessible route for people to participate.
    I have been debating in my mind for some time the question of ‘usual suspects’, as who is a ‘usual suspect’ means different things to different people – and also it is a disparaging term so I am banning myself from using it!
    For instance there are a number of people on our Citizens’ Senate who were not well known as public voices when they started working with us, and perhaps came from less obvious backgrounds, but now they have undertaken quite a lot of high-profile work are in danger of being labelled with the term. When does an ‘unusual suspect’ become a ‘usual’ one (and that is the last time I am going to use that term). Instead of calling people by unhelpful terms we should be celebrating their participation and desire for change!
    However, I fully appreciate that there are numerous other people who might want to be heard but for whom a Citizens’ Senate, Healthwatch or whatever, is not the most comfortable or easy route to participation. I completely agree that there must be other routes and strong efforts made to hear what is being said from all sections of society, and that these must also be fed upwards to Board level. I am keen to think abut how that can be done and support any steps to making it a reality.
    However, my point about Citizens’ Senate is that we also need the depth of discussion and connection that they can bring. If there are thorny issues to be tackled, are citizens really going to be able to get to grips with that at twice-yearly NHS England board meetings without the background and connection of discussions with other interested people at a regional and local level? That is what Citizens’ Senates could uniquely provide – a forum for topic selection and debate on relevant health issues, bringing in not just their own membership but whoever else needs to participate. Yes, in theory this could be done nationally, but how many people are truly going to be able to take part if they need to travel miles to do so and/or are unwilling or unable to use electronic means?
    What I think I am saying is that everyone’s voice is important, and while no one person can claim to represent the true feelings of everyone else, having people who are at least willing to stand up and fill the void for others who won’t or can’t is a vital piece of the jigsaw.

  3. Perhaps Pop-Up Meetings in Town Centres could help. Other possible venues could include railway stations, seasides, sporting events etc. Staff could be on hand to listen to people’s views and concerns and captive iPads could be used to record people’s thoughts.

  4. I too am concerned that all too often it is the senior managers in the voluntary sector/charities who are asked to act as the ‘patients representative’. They are obviously not representative! They also do not know what my views are because I, as are 90% of the population, am not a member of any group.
    We need local input to commissioning and monitoring, of care services, as well as at regional and national level.
    How can we set up a local senate for care services?
    I have tried to get our Practice Participation Groups to work together but many of them do not seem to be interested.
    Local Healthwatch is spending most of its time talking with the voluntary sector to get them to do its work.
    The realities of real meaningful PPI are a distant glimmer at the end of a long tunnel.

  5. Makes perfect sense to utilise the regional senates to support NHS Citizens. The “usual suspects” is a very interesting debate. I am a 38 year old professional woman with a LTC and I am carer, therefore I am not oldish or youngish. I volunteered to be part of the EOE Citizens Senate but I do know of many of my network that would know how to get involved. Unless you are proactively interested in the NHS do you know these types of forums exist. Targeting big firms in different sectors might help? My local Healthwatch is dealing with very specific issues (access to GPs in the local area, and local mental health services) however there are 152 of them so they could be a great source of information regarding what is important to people across England?

  6. While I agree with Kate that a truly representative Citizen’s Senate is essential, I also agree with Justine that the dismissal of specific groups as “Usual Suspects” is unhelpful and the charitable sector has been particularly in providing patient voice and insight and advocacy…..I am indebted to the support I received from the Patients Association with regard to inadequate Stroke Services.
    Patient Participation/Representation is being bandied about and the debate is centred on the structure and recruitment to the Citizens’ Senates. I would rather that we focus on Culture and Strategy for Involvement as a starter since a Citizens’ Senate “model” from East of England has no track record as yet and is being used as an example of what is working when it appears to be little more than “Emperor’s Clothing” and we are possibly spending to much time disputing who pays for the dry cleaning.
    I also question the value of a National Citizens’ Senate based on 2 patient representative appointees from each of the Senate PV&Is, many of which do not stand scrutiny as having achieved much for patients.
    As a patient representative member of the West Midlands Clinical Senate Assembly (appointed by interview), the question of who is most appropriate to represent patients is perplexing. In truth, it is generally those of us “in the know” who are privy to the appointments available…..are we not equally “usual suspects” ? As a former Publicly elected Governor of an Acute Hospital NHS Trust, I was elected under the governance of the Electoral Reform Service and I believe that any cosy arrangements which may favour me should be subject to public scrutiny.
    Finally I believe that Tim Kelsey should convene a meeting of existing Patient Representatives currently serving on Clinical Senates/PV&I Groups to address strategy and structure of the Citizens Senates since this matter should be too important to be left to the preferences of potentially unrepresentative individual patient representatives.
    Brendan Young Patient Representative West Mids Clinical Senate, West Mids AHS Network, Worcs CCGs Stroke Strategy Group, Worcs CCGs Area Prescribing Committee, Worcs Health and Care NHS Trust Patients Forum, All Party Parliamentary AF Group.

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