In the July 2021 Citizens' Panel meeting, the following was discussed:

• End of Life Care
• Gluten Free & Meds Optimisation
• Cancer Alliance and ICS Update
• PIFU (Patient Initiated Follow Up)
• AOB

Review and sign off minutes from last meeting(s)

Minutes were approved once the tracked changes have been accepted and removed.

1. End of Life Care:

Richard talked about the first iteration of the standards document for end of life care which was launched during “Dying Matters Week”. The standards are not cancer specific, they are for all people with a palliative diagnosis or someone close to the end of their life. It has been acknowledged that since the start of the COVID-19 pandemic the way people access support or choose to die has changed and so has the way in which professionals deliver end of life services in primary care. The standards focus on how organisations should respond, deliver and collaborate on providing these services to patients, and will be developed from this first version through collaboration with health and care teams in SYB who are involved in end of life care. Eventually all professionals across all organisations will be able to provide assurance that they are working to a specific set of standards.

Fiona: Are you going to be including the public, and families of those who have received end of life care in the last few years in this work?

Richard: Yes. The public have not been involved in the current version but this is because it is meant as a starting point for different stakeholders to add to as the conversation develops. Engagement work with patients, the public, and families will be done and someone will be identified within each specific organisation to listen to the feedback.

Mary: You mentioned you might hold engagement events locally, have you approached Aurora?

Richard: Yes we will consider approaching groups such as Aurora.

Mary: How will you measure when each organisation meets the standards which are expected of them?

Richard: It will be through self-reporting, but also data-driven. There will be a responsibility for each of the Place leads to look at the standards and tell us how they are achieving them, and there is a national dashboard which can also show this using data.

Joan: Who will you be surveying; will it be people in hospitals who are at the end of their life and their relatives?

Richard: The process is that we would talk to people via someone working within their current care team, if that was the most appropriate. Hospices will also be able to provide support with this work, but there is a commitment to speak to the patients themselves, the patients with a palliative diagnosis, and also people who are in the final stages of their end of life care, as well as families and carers. This is something we would manage very carefully and sensitively.
Recently we have also seen an increase in people dying at home, in part due to the improvement of community services prior to the pandemic, during a period where more patients have that choice.

Joan:  Will you be utilising bereavement support service sites on social media?

Richard: We will be looking to use local services as much as possible but there could be a variety of approaches.

Phil: In one or two sentences, could you tell us how you will eventually judge whether the standards have been successful in what they want to achieve?

Richard: The experience of people and families affected by palliative and end of life care having improved from what we have heard from people going through this in our area in the past.

2. Gluten Free & Meds Optimisation

Gluten Free

Kavitha: Following engagement work undertaken before the pandemic, we asked the Joint Committee of Clinical Commissioning Groups (JCCCG) if they would support having a single commissioning policy for prescriptions of gluten free food. As the feedback from patients and the public in the engagement suggested they would welcome equity the JCCCG supported this and suggested that we carry out additional engagement work, and so we undertook an Equality Impact Assessment (EIA) and have begun engagement with dietitians working within SYB. The draft EIA suggests that people who are under 18 years of age, people with learning or physical disabilities, people in rural areas, and people of low socio-economic status may experience inequity of access to gluten free foods.
The next steps for this work are that we do some further engagement, consult more staff within the services, and develop an action plan before taking this back to the JCCCG.

Phil: is there a difference between the localities and how much gluten free food they prescribe?

Kavitha: Yes at the moment there is.

Katy: if anybody has any further comments after reading the EIA, please email me.

Integrated Pharmacy and Medicine Optimisation

Andrew: Meds Optimisation is making sure that patients get the best out of their medicines. I’ve put together an ICS-wide strategy for integration between different groups of pharmacy. In the past, we have found ways to improve integrating community, hospital, and GP practice staff pharmacies.
 It is a requirement for us to do a strategy for the ICS. As part of this we have been engaging with a number of different stakeholder groups that have a legitimate interest in the work, and we would like the Citizen’s Panel’s help developing the strategy. To see drafts of the plan as it develops we would also like to invite you to join a wider engagement reference group.

 The three things we would like to improve are medicine safety, quality and appropriateness, and value. A key theme running through this will be looking at how we can improve health inequalities.

Mary: One of the areas I’ve noticed is the inconsistency of packaging for the same drugs, and that sometimes different drugs can be in identical foil packaging. When pharmacies cut up packets they can also get lost easily.

Andrew: Something we are keen to do is to break down some of the silos pharmacies have been working in by following patient pathways and collecting patient experience along those pathways. We would like to make services easier for patients to access based upon their current experiences.

Priscilla: When people are prescribed medicines you are given a leaflet full of text about side effects, and what always concerns me is that people with low levels of health literacy or reading, can this be factored in?

Andrew: This does come into our work, we want to join up all the different parts. In hospitals it can be hard for pharmacists to find the time to describe the side-effects of medicines verbally and therefore people rely on written information. There are also schemes looking at community pharmacists and encouraging them to provide information or signpost.

Katy: It’s good to hear that patient experience is going into the strategy as that is a missing piece. Do we also need a communications marketing campaign running alongside this to raise the profile of pharmacists and their qualifications in order to increase patient trust in their services?

Priscilla: I agree that this would work well, as there has been a recent promotion of services you can access at pharmacies.

Kavitha: A key part of the work is looking at how community pharmacy can be more involved; they are ideally placed and can do much more than dispense medicines.

Phil: It’s a fascinating subject. Over-prescribing may also be something to factor in. It would be good to see where the patient experience information goes to, and hear back about the interim reference group and the line from patient experience to the decision making.

3. Cancer Alliance and ICS Updates

Cancer Alliance Update:

Sophie: The Nudge the Odds behavioural science programme is about encouraging people to go to screening and make appointments at their GP about potential cancer symptoms through community conversations by care coordinators in practices. It has “gone live” in a couple of places and we continue to receive feedback on progress.

We have also recently been approached by MSD, who have been doing lung cancer campaigns in partnership with the Northern Alliance. It targets people who have lasting lung symptoms who may not be looking to investigate whether it’s due to cancer because of assuming it is long-Covid.

Priscilla: could you send round an update on the programmes and how they are planned to impact cancer waiting lists?

Sophie: Yes I’ll forward anything relevant to the panel.

Katy: Associated with waiting lists more broadly than cancer, we have been chosen as an Accelerator programme site. This aims to get on top of the backlog of patients waiting to be seen in hospitals due to Covid-19. This will be through using e.g. private hospitals, evening clinics, technology etc to maximise the number of opportunities for patients to be seen. Hospitals are under a lot of pressure at the moment due to Covid-19 staff absences and emergency patients. We are aiming to get patients to be seen as quickly as possible perhaps in a hospitals which isn’t their closest site, and I would be grateful for your input in how to present that to people in a wording where they will understand and take up opportunities.

Joan: Is there an alternative to people going through their GP surgery to book appointments as there are still big delays?

Sophie: This would still be through GPs although some offer an e-consult form to fill in depending on which surgery.

Mary: The Clinical Effectiveness Committee at Bassetlaw have heard recently about bad experiences with waiting lists.

4. ICS Update

Helen: The Health and Care Bill was introduced in parliament a couple of weeks ago (6^th July 2021) and included many important pieces of information. One of these is the new Secretary of State’s powers including that they would see all service change proposals in the future.
There is an introduction of integrated care boards and the integrated care partnership.
The appointment of the chair for ICSs will be made by the end of August.

Mary: is there guidance about the Board of Governors and patient and public roles within this?

Helen: in the Design Framework it says that as part of ICS arrangements, each NHS body is expected to provide a range of NHS engagement approaches.

There is another announcement due 19^th July about restrictions in England. It seems as though mask wearing and public health guidance in health and care settings will remain for the time being.

Priscilla: my understanding is that because the mask wearing is not written in law, then people can dispute this.

Helen: It’s true that there may be no jurisdiction but there will be clear messaging about what people should be doing.

5. PIFU (Patient Initiated Follow Up)

Martin: In some specialties in some hospitals in SYB we are giving patients the option to go on a Patient Initiated Follow Up (PIFU) pathway rather than a standard follow up pathway. The decision about which pathway will be a joint decision between clinicians and patients. We are looking into patient decision aids which describe the benefits of both options so that they can make a choice which is right for their circumstances.

Fiona: Which is the default option?

Martin: there won’t be a certain default. After every appointment the decision will be made as to which pathway to continue on.

Fiona: My concern is that someone will choose PIFU but might not be fully aware of their symptoms and the right route for them.

Martin: This has been part of the conversation – there has to be a health literacy understanding or an assessment with the clinician to provide assurance that the patient would be able to manage their condition. We would be making sure that the PIFU pathways are appropriately allocated to conditions where they are useful.

Katy: For those who have seen the tool, do you think it is useful?

Phil: it could be worked into something which is visually appealing and given to patients to look at at the right moment.

Time and date of next meeting: Thursday 23^rd September 10am

In the May 2021 Citizens' Panel meeting, the following was discussed:

Review and sign off minutes from last meeting(s) - minutes were approved

1. Digital update
2. ICS updates
3. Allied Health Professionals workforce strategy update
4. SACT chemotherapy work in Barnsley
5. Cancer Alliance Update on behalf of Sophie Stevens-Jones (Cancer Alliance Communications and Engagement Lead)

6. “Your COVID Recovery” assets

Digital update:

• Trusted Touchpoints (an update following the digital literacy presentation at the March CP meeting)
• Digital Citizen Offer update (an update following the Digital Citizen Offer presentation at the February CP meeting)

Andrea presented slides on the Trusted Touch Points initiative – developed by co-design through mHabitat and the different Places.

Fiona – Last time you mentioned about contacting Doncaster council about the digital work they’ve been doing as they do a lot in the community, has this been looked into or could you do this to move it forward?

Andrea – I have a meeting this afternoon with the representative at Doncaster as this needs pushing forward

Fiona –Are you linking into the wider digital work like Digital Eagles and Barclays Bank?

Andrea – we have touched on that, we had a second design workshop recently and asked for each place to provide an update on what’s happening and what they thought they could do to move it forward and Barclays was put forward so we’re considering taking that forward in the future.

Brenda – What is causing the delay in Barnsley and Doncaster?

Wendy – We had a meeting yesterday with the Doncaster CCG group and there was a Helping Hands representative there so that’s someone we could reach out to, and similarly we’ve engaged with Barnsley CDS in June so we could also ask there.

Phil – The way you’re using the voluntary sector groups, is there any funding available to support them in their work?

Andrea – This initiative has come from some funding that we identified this year and we are expecting to bid for further funding this year. I’m not close to how that funding is flowed into the organisations but my understanding is there has been some funding going to these organisations to support the work.

Mary – It’s disappointing that this is something which is quite well established yet there are two areas lagging behind, what are your thoughts on that?

Andrea – the work is in the early stages, and the COVID-19 pandemic has led to a huge increase in the world of digital and through that increased use we now recognise there’s a greater need than ever before, and we only just got the trusted touchpoints going so there’s a lot more to do, we don’t plan to stop with this one. Whilst it’s always been a requirement it’s now a top priority.

Joan – I’d like to back up what Mary’s said and we’ve got a service in Retford but I’ve never heard of Oasis, who are they?

Andrea – it’s a support group for the Polish community.

Joan – how come we haven’t reached the people from Bassetlaw Health Centre?

Andrea – this is an initiative we kicked off to think about how we need to tackle inclusion and literacy and came out of a co-design piece to think about who might be digitally excluded, so for the Bassetlaw area we chose the Polish community. This is not to say that there aren’t other health inclusion groups, these are just the ones we are testing it out in as we identified them and we want to understand what tackling digital literacy might mean in the future. We have not got the findings from the trials but I suggest when we have them we bring them back to this group, and we will also compare it to other systems about what they’ve done.

Hazel – I would suggest you continue to consider the rural communities, and the fact that there are a large number of the population living in rural communities who don’t have access to proper internet connections

Phil thanked Andrea as she had to leave the meeting at this time. Wendy continued with the presentation on the Digital Citizen Offer and digital discovery work which included a survey, focus groups, patient stories, and key priorities from the findings.

Hazel – What’s the timescale for this work?

Wendy – we will be taking it to the new ICS board in September / October and taking the recommendations there. We will be looking at the business case and funding and which products might fit our needs. We have gone out to ask who might be interested in helping us, so we will start looking at those products and which might be a good fit. The public is likely to see something sometime next year. There are lots of products already out there so we need to investigate the contracts there and managing collating everything together. We will be starting small by looking at the core products in once place and then rolling out across the area bit by bit.

Mary – With regards to your outcomes, I totally support that for outpatients they’ll be beneficial but I’m struggling to understand how that will help with cardiac rehabilitation. You said you spoke to people on the cardiac team – was this acute or community? As community can be different in terms of providers and I don’t know how they will be able to access cardiac rehab and replace the service.

Wendy – it’s not about replacing the services, a lot of the feedback we’ve had is that it’s fine to do digital after the connection with the clinical service. It might be in this instance that they might want to track their steps or communicate with their professional about their medication. Another area that’s been identified from acute is that there’s a delay between leaving the hospital and community cardiac rehab so it would be good to give patients something in their hands to bridge that gap such as basic things they can start on before they’ve seen the cardiac rehab nurse. It’s auxiliary and has to be embedded into the services. People need to be taught how to “prescribe” digital and train the nurses how to teach the individuals especially the older cohorts.

Fiona – In terms of the timeframe you mentioned about going to board in September, will you then have timelines about the different stages?

Wendy –Depending on which route we go we might have to go out to procurement or purchase a framework so that will affect timelines.

Fiona – does this link with the digital touchpoints work?

Wendy- they go hand in hand and we’ve had some great feedback from the public (e.g. deaf people, visually impaired people), and we want the product that people get to be tailored to their specific needs.

Brenda – This is a huge and complex piece of work, and I was surprised with the number of applications people can engage with. Is there an agreement with the other applications across the patch about suspending development of some current applications to save on the cost in the long-term?

Wendy – by streamlining it the price should then come down and the larger the population size the more buying power you have e.g. in working as SYB ICS together. There is agreement internally within the ICS that we are looking at the contracts in the future as part of the project and there is that alignment.

Phil – we sympathise with the challenge and we know people get very attached to the systems they’re using so there’s a lot of people work to be done as well as the digital side which really can do anything. It does need doing and it’s good to see there is an ICS wide approach being looked at. Thank you for speaking on such a big issue.

ICS updates

Operational update regarding the vaccination rollout in our region:

Helen - Covid vaccination has been a huge success and there’s a race on to vaccinate as many people as possible before 21^st June. The so-called Indian (Delta) variant is extremely transmissible and the news reflects the concerns around that.

Helen then shared some slides about ICS development and transition to a statutory body.

Hazel – On this morning’s news there was a story about national treatment hubs that would survive any future pandemics, have you heard anything more about that?

Helen – I expect the plans for our region are being drawn up for that, and we can update on what that looks like for us. It’s all part of the whole system trying to manage the COVID situation and get on top of the backlog.

Hazel – What’s happening with the boundaries issue between Bassetlaw and South Yorkshire?

Helen – the discussion about resolving this is underway still, and we expect the decision next month.

Hazel – Thank you. My second question is about governance and whether there is going to be an equivalent of the council of governors, will there be an equivalent and if not then will the councils of governors still link in in formally?

Helen – Lay representation in statutory bodies and what that will look like is key, and we are waiting to find out the precise guidance. How we set ourselves up may be open to some local negotiation, we are told it’s permissive with some specifics. We definitely won’t lose our Citizens’ Panel as it has been instrumental and if anything we want to strengthen the group and also use our online membership.

ACTION: Helen to share the guidance referenced above when able to.

Allied Health Professionals (AHP) workforce strategy:

Hazel – I’ve been involved in this process and there’s been weeks of work and meetings so it’s nice to see it distilled into the goals and ambitions.

Mary – I found that very interesting. What does QSIR stand for?

Gareth - Quality Service Improvement and Redesign, which means ensuring people have the right skills to improve quality of services and redesign them.

Katy – Please could people give some thought to engaging the public in some of this? We also have got another challenge about the term “AHPs” not being publicly understood as much as e.g. doctors or nurses. Should we be using language that’s more commonly used and how do we engage the public to gain a broader understanding?

Phil – detailed examples to build a picture of what the role involves are useful in this circumstance so you could consider this.

SACT chemotherapy work in Barnsley:

Katy - We are in the stages of finalising the engagement report that will go to one of the estates team at STH, and early analysis coming through seems to show that a centre in Barnsley is supported by the public engagement. The engagement told us that people want best quality care in a safe environment but fairly close to the hospital. We will share what comes out of that but should be pressing ahead.

Cancer Alliance Update on behalf of Sophie Stevens-Jones (Cancer Alliance Communications and Engagement Lead):

Helen - There’s a focus within the Cancer Alliance to look at the backlog in cancer services. We are benefitting from receiving some national funding as part of the Accelerator programme which funds innovation pilots for getting people in though the system to reduce the backlog of care.

Katy - The Cancer Alliance annual report is to be published next month which will be shared with the group. There are also two campaigns going live – the Lung Health Checks in Doncaster and the Nudge The Odds campaign.

“Your COVID Recovery” assets:

Katy - I was involved in the Task and Finish group for the long COVID clinics, which at system level was about offering oversight and ensuring equity because the clinical pathways are being developed  at place. We did notice that at system level it wasn’t actually just long COVID symptoms that were an issue, it was the weeks post-COVID where people didn’t know how they were supposed to be feeling and reassurance would have been really helpful because there’s nobody or nowhere to ask for information. We’ve put together some assets to signpost people to the Your COVID Recovery national website. They have been really well received and there appears to be a need for them. Doncaster asked if we were considering printing them as posters so people are keen for us to start using them, but whilst we are waiting for clinical input would you be able to give any thoughts and feedback as well?

ACTION- Katy to share the assets for feedback from the group.

Joan - does this mean there is a link we can already use to share online to signpost people?

Katy – yes there’s a website already so we’ve put together some images to draw attention to it (https://www.yourcovidrecovery.nhs.uk/)

AOB

Fiona -   it’s been really nice to work with Adam on the new ICS website, he’s been really helpful and picked up on all the feedback and made all the suggested amendments.

Katy – we have gone live with the new website and it has got good feedback so thank you for the helpful input provided by members of this group

Time and date of next meeting: TBC

In the March 2021 Citizens' Panel meeting, the following was discussed:

• Recovering cancer services across the South Yorkshire and Bassetlaw ICS Cancer Alliance
• White paper and ICS development
• Covid Vaccines update (verbal)
• Digital Literacy
• AOB
   

1. Review and sign off minutes from last meeting(s)

There were two points regarding the previous minutes:

• Adam to circulate the ICS website survey again as it was noted this had not yet taken place
• Brenda asked that a comment from her relating to local SACT services be revised to properly represent what she had said

With the above corrections then the minutes were agreed to be acceptable and appropriate for sign off.
 

1. Recovering cancer services across the South Yorkshire and Bassetlaw ICS Cancer Alliance

Julia Jessop and Georgia Thompson presented slides about the impact of COVID and recovering cancer services, which was felt most after the first wave and from which recovery is still ongoing. Actions for recovery were explained, including the use of data driven targeted interventions, developing optimum clinical pathways, new roles, harnessing innovation and harm minimisation methods, the aim of which is to reduce the backlog of referrals including those which are unseen due to patients not presenting at their GP.

ACTION – Georgia Thompson to share the slides to the group

Hazel – Thanks for really good presentation. What’s happening with the wider population, I’m sure patients are going to be dealt with on an individual basis, but what wider publicity, communications or engagement is going on to support this?

Julia – there is a big national focus on this with help us to help you, the NHS still being open, and this is going out across social media as well. We are doing the behavioural science work in specific communities where we think we are missing those people coming forward for which the pilot programmes are underway.

Mary – what timescales do you envisage getting the pathway navigators into post, and are they Trust specific?

Julia – They are trust specific but with system wide peer support and collaborative working. We are interviewing now so certainly within Q1.

Georgia – we are trialling some roles in primary care as well as the hospitals too, and having the voice of people affected by cancer in the development of the roles is key.

Joan – Are we using private hospitals for NHS referrals for people to be able to go into them to be seen? As I imagine a lot of them are COVID-free as they are not looking after patients.

Julia – Yes, nationally they put a contract into place so the NHS has access to independent sector facilities so we’ve been using it for some cancer surgery but not a lot. We felt that we needed to use the independent sector for other things to allow the cancer surgery to continue in the normal hospitals and a lot of that is to do with facilities.

Joan – these people you are looking at that aren’t presenting, couldn’t we think of having cancer testing sites like COVID so that people can go outside rather than going into their hospital?

Julia – There has been lots of discussion about this type of testing and this is a real longstanding issue, and we have a problem with people presenting later. We do really need to start thinking about maximising opportunities to reach people outside of GP practices and hospitals. Recently we went live with targeted lung health checks in Doncaster so there’ll be learning there for this sort of testing. We do need to start thinking about how we do things differently.

Brenda –Do you think you’ve got enough resource to put in these critical navigator roles?

Julia – Yes, there’s specific funding within the rapid diagnostics work, and it will be a pathway by pathway approach.

Priscilla – We really would like you to come back and update us on how the recovery work is going.

Sophie – “Nudge the Odds” behavioural science cancer work is going to our Cancer Alliance  Communications and Engagement Steering Group and we will bring it to this forum too so you can hear about it in more detail.

ACTION: To have Cancer Services Recovery from COVID and Nudge the Odds as future agenda items

White paper and ICS development

Due to issues with Helen Stevens-Jones’ technology, the slides could not be shown in the meeting.

ACTION: Helen to share the slides after the meeting for information.

Helen verbally explained the White Paper and the planned development of the ICS.

Christine Joy and Lesley Smith and Helen are putting together a plan for the comms & engagement approach.

Phill – I’m not undermining the stress of the people working on this as I know it’s hard and what it’s like, but for the man on the street this doesn’t feel as though it has much meaning – especially faced with all of the real problems we are facing at the moment.

Helen – you’re absolutely right, the vast majority of people just want to know they can access the services they need, and this is mostly staff facing communications and engagement but we do need to communicate with the public as it’s our duty to share these developments with them.

Covid Vaccines update (verbal)

Katy Davison provided an update on the current status of the vaccination programme both nationally and locally.

Phill – I’m concerned about people in some of our most rural communities having to travel to the mass vaccination centres? That isn’t inclusive for our most vulnerable populations.

Katy – GP hubs are still vaccinating but as we move into the over 50s cohort nationally they made the decision that it would make sense for the GP hubs to prioritise the more vulnerable people and those who are being invited due to their age not vulnerability will be invited to the mass vaccination sites.

Brenda – In Barnsley we have quite a high infection rate and people are saying it’s the younger people causing this, do you envisage the vaccines going to the younger age groups and how we get them to access them?

Helen – Yes vaccines are to be offered to people from age 16 and over and still on track to vaccinate adult population over 16 by end of July.

Katy – Place partners in Barnsley are also working with people from Barnsley on an insight based campaign to encourage compliance to covid restrictions.

Digital Literacy

Ben Gildersleve and Pete Nucley shared slides about digital literacy and the digital citizens offer, including that they had taken on board previous feedback about avoiding the word ‘citizen’, and Pete talked through the benefits of fixing the digital divide in terms of the economy, health and wellbeing, and equality opportunities.

ACTION: Pete to share slides with Katy for sharing with the group

Fiona – Are there any plans to work with the local authorities on digital literacy?

Ben – Yes, we think local authorities are doing more on this than health organisations are. We are going to speak to them about how best to coordinate this work. The health Place Leads work with people at the council and endorse the work but we could do more as well.

Priscilla – do you have links with adult education bodies across the patch if they still do courses like Silver Surfers and Computers for the Terrified?

Pete – Looking for these types of organisations will be part of the touchpoints work.

Phill- has there been any comparison with people from countries where they all have free WiFi?

Pete - The councils can look at this if they can access the data. 90% of this problem is a cost problem. As an example, if people want to use NHS.uk, then it’s free to access, but if I wanted to walk on the moon it’s free –but only if I can buy a rocket and a spacesuit and train as an astronaut – it is the same for needing the equipment for accessing free NHS websites.

Priscilla – Thanks, this was really interesting.

Ben – The motto is to start small scale fast. We will make sure we come back to you once a quarter or 6 monthly to test things with you and discuss progress.

ACTION: To invite Ben and Pete back in a few months’ time to provide an update.

AOB

Katy – Stroke services are thinking of setting up patinet group - if any of the panel are stroke survivors or carers of stroke survivors and would like to be involved please contact Katy

• Aisling Robinson – I sent out the ICS Let’s Talk Health and Care membership newsletter draft, if anyone has any feedback?
  
  Brenda – the links all work, but the survey poll currently has an invalid closing date
  
  It was also raised whether there would be Easy Read options for people with learning disabilities as there is a lot of text

ACTION: Aisling to look into Easy Read versions of the newsletter

ACTION: Future meeting agenda items wanted by the panel include: National information on the pandemic, local information on vaccine uptake, cancer recovery and digital inclusion updates.

In the February 2020 Citizens' Panel meeting, the following was discussed:

• Outpatients Programme – Equality Impact Assessments (EIAs)
• ICS new website user testing feedback
• Digital Citizen Offer
• Cancer Alliance Update
• Long COVID pathway

Outpatients Programme – Equality Impact Assessments (EIAs)

Juliet (SYB ICS Outpatient Transformation) and Rose (NHS England & Improvement North East and Yorkshire Region) joined the meeting to present an overview of the Outpatient Programme and the EIAs that have been drafted for each of the three areas - optimising virtual consultations, patient initiated follow up (PIFU) and advice and guidance. There had been draft impact assessments for all three areas shared with the group for comments and Rose welcomed questions from the group.

Brenda – In the information around virtual consultations, the word options is used, is video consultation optional or standard?

Juliet – it is down to individual trusts and their services, although we would expect them to provide options and have discussions between the patient and clinician.

Brenda clarified she was referring to post-Covid in the original question, and raised that video consultations have their limitations, so your health may require you to have a face to face appointment, or have a video consultation in the first instance and then face to face if needed. 

Fiona – I have a question about access to technology; it needs to be very clear in the instructions what the process is if the technology doesn’t work and who is responsible for making contact, the patient or the clinician.

Juliet - there is variation across SYB at the moment, an analysis is being carried out on the current processes and we want to ensure it works for patients and clinicians, which could include text reminders or clear information about what to expect before the consultation. Trusts have different processes but good practice is to have protocols in place e.g. for someone to call the patient if the patient doesn’t join a call as expected.

Joan - it should be about patient choice, and people might still prefer virtual post-Covid as it takes out travel time.

Priscilla – asked question about digital divide and the pandemic, is there recognition that there are people who can’t afford laptops and smart phones to address those inequalities?

Katy – There’s a piece of work around digital literacy taking place to underpin all the work of the ICS and this direction of travel and understanding those communities that might be affected and the specific issues, which is not always access to technology but could be a variety of things.

Rose asked that any further feedback on the EIAs be sent to Katy and that this feedback will go into the equality impact assessment documents.

Action – KD to liaise with the Digital workstream about covering the Digital Literacy work at the next Citizen’s Panel meeting.

ICS new website user testing feedback

The Comms and Engagement Associate for the ICS (Adam) provided an update on progress made on the website since December, with comments taken into account. People confirmed that they had viewed the link provided prior to the meeting.

Action – Adam to circulate the survey again.

Fiona and Brenda highlighted a couple of use-ability issues they had encountered on mobile devises.

Action - Adam to flag the issue with the web developers

Adam thanked the panel for their feedback, and requested that any further feedback to be sent ASAP and offered to go through the draft site with individuals via Teams if they wanted to.

Digital Citizen Offer

Ben i(SYB ICS Digital) ntroduced himself and apologised for having to leave the meeting, and passed over to Andrea who gave an overview of the digital citizen offer.

Andrea (SYB ICS Digital) – The NHS Long Term Plan talks about digitally enabling care pathways. We want to ensure that SYB citizens have a common experience of using digital, and want to consider opportunities for having a common platform across SYB and across all workstreams. We have the agreement of system CEOs to pursue this vision, and now want to think about how to design and deliver the capabilities. Want to ensure we understand citizens’ needs and test the capabilities and outcomes with citizens ahead of any procurement.

Rachel Ward shared slides about the citizen engagement approach proposals, which is about gaining insight from existing work about public and patient views on digital, and working with a specific group to support with the different stages of the process.

Joan – what is a “digital citizen offer”?  I thought it was going to be an online digital citizens’ offer so it’s unclear why it’s called that.

Andrea – yes when we talk to you, we need to think about what we mean and this might not be the right description. It’s a set of digital capabilities which you might use to interact with health and social care opportunities – accessing online, remote monitoring tools, there’s a whole range of capabilities that are available that we could provide.

Action – Andrea to open discussion within delivery group to find the right name to express what we’re trying to communicate.

Joan – are you saying citizens i.e. the public? It’s not a term normally used to mean public, associated with the Citizens’ Panel.

Andrea - Yes

Priscilla – Do you need anything from us to join a panel for the digital work?

Rachel – it felt right to invite people from the citizens panel to be a part of it if that’s what people are interested in, but we will report back to this panel at appropriate points as well.

Abigail –are you finding it’s harder to connect to those people we want to engage with when we are only able to use video technology and not face to face engagement?

Katy – we have done various work since the start of the pandemic and for the most part the people we generally find hard to engage with are the same in the pandemic, so we are still working with our partners in the voluntary and community sectors to make sure we can still reach into seldom heard communities, particularly those who are digitally excluded. We’ve done some work with South Yorkshire Community Foundation as they are good at getting into the seldom heard groups. Their perspective was they have still managed to reach into most communities.

Priscilla – What are trusted touchpoints?

Andrea – We did some work to find out the places or people or organisations that people who are digitally disengaged would trust to help them become more digitally enabled, become digital champions for that community potentially.

Action – Digital trusted touchpoints (which is part of the digital inclusion work) to be put as first agenda item for the next meeting.

Andrea, Rachel, and others from the digital workstream were thanked for attending.

Cancer Alliance Update

Sophie (SYB ICS Cancer Alliance Communications and Engagement) shared slides on the rapid diagnostic services ambition over the next 5 years for cancer services, including the pathway navigator roles, the quality marker weighting work with patients to prioritise elements of the service design, and the FIT testing in for colorectal cancer in primary care.

Joan – will the usual bowel screening service for over 60s continue?

Sophie – Yes this will continue alongside. This new FIT programme is for those who present with symptoms at their GP, who in the past would have been referred to secondary care but will now be offered FIT testing in primary care to help determine if a referral is necessary.

Priscilla – Is it for people over a certain age?

Sophie – No it’s for all people who are coming in with symptoms.

Brenda – is it the same test that the over 60s get?

Sophie – It’s basically the same

Abigail – when are pathway navigators assigned to patients?

Sophie – at the point of referral in most circumstances

Action – Sophie to share further information about the pathway navigator role to the panel.

Priscilla – There is a large backlog of cancer patients due to Covid, how does this work fit in with work to support people who will have been missed off lists or investigations postponed?

Sophie – There is important work being done on this. The RDS work will help by ruling out cancer sooner and therefore getting the people at most risk in sooner, there’s also work going on for patients being diagnosed but also looking at patients who are on the pathway. We could come back to talk about it at future citizens panel.

Joan – this is important and if it does work it will have a really big impact

Katy described the SACT work to the group, which is around the national ambition to bring chemotherapy closer to where people live, or provide that as an option. Services are already available at Doncaster delivered by Weston Park, but predominantly people across the region are currently going to the Weston Park site for chemotherapy. There has been a 14Z2 engagement piece done around this, but patient engagement will be continued throughout the process.

Brenda – some people might want to know whether their treatment or level of service be the same as at WPH and whether there would be enough staff.

Katy – Thank you, answering that will be built into the communications.

Mary – would that be linked to the PCNs and the way they are organised geographically?

Action - Katy to raise this query with the SACT team

Phill – Depending on locations being looked at - sometimes it can make it more difficult as access to some venues is an issue even if it’s closer (due to public transport routes etc).

Katy - that’s to be taken into consideration.

Long COVID pathway

Katy (Head of Comms and Engagement) - it is governmentally mandated that we have long COVID services in place, and Partners in SYB decided best to establish them at place. At system level we are coordinating, plugging gaps identified, sharing best practice. We set up a survey via social media and other networks, which had a good response rate, and a focus group which was well attended by people with experience of Long Covid. We also commissioned the South Yorkshire Community Foundation so we would hear from seldom heard communities e.g. BAME and we pulled the findings into a report which was shared with the meeting papers. The report has been used to inform a gap analysis and feedback to the places about where their services aren’t meeting what patients have feedback. Overall there’s a lack of information and reassurance for people who have had Covid but may not have long Covid, which we need to develop comms for.

Abigail – Are the current chronic fatigue volunteer services e.g. in Sheffield getting any more funding and support as they will be needed much more than previously due to Long-Covid?

Katy – This is a really good question, and the services are different in different places.

Action – Katy to go back and raise the question of the role of the voluntary sector in terms of Long Covid services

Fiona – are there plans to follow up on those you did speak to, was there any conversation around occupation, previous levels of fitness – where does that information go?

Katy – everyone in the focus group was asked if they wanted to continue being involved, and the focus group was a real mix of people and occupations and levels of fitness, but that’s a really good point and we need to continue to engage going forward.

Phill – this is really important work, especially as there are inconsistencies about e.g. vaccine roll out and analysis on Covid processes is a positive thing.

The January 2021 CP meeting discussed:

The Future of ICS’s NHS E/I document
Vaccine update

The Future of ICS’s NHS E/I document

The Director of Communication amd Engagement (Helen Stevens) highlighted that this session is to discuss the future of the ICS’s NHSE/I document, feedback on which is due back to NHSE/I Friday this week.

Hazel highlighted that she’s feeding into this conversation via the Lead Governors Association and her role on DBTH Governing Body. HS said that this demonstrates a very important point, views are being gathered in lots of different places.

Mary: Given that it talks about all CCGs being part of an ICS by 2021, the ICS’s across the country are all at different level across the country, and given the current pressures wouldn’t it better to take a slower approach? Should all powers automatically transfer from a CCG to an ICS? Will we all be ready?

HS: April 2021 deadline is the start of a developmental phase – to be ready for ‘go live’ in April 2022, but important points about pace.

Brenda: How does SYB fit into the national picture, with ‘ICS’s at all levels of maturity’?

HS: We're were one of very first parts of country to become an ICS and are considered mature, but doesn’t mean we don’t have further to go, but like to think we start in a strong position.

Joan: The document is very difficult to read for a member of general public. Two things that worry from a patient POV. Is it going to add another layer of bureaucracy so that it’s even harder for decisions to be made?

HS: Where is the voice of the local patient population in the future? Good question. Incredibly important.

Fiona: Going back to Mary’s point about timing and the plans for April time, linked in with Covid-19 pandemic – the pace concerns me. From a document POV – very difficult to read and needed to look at other information at the same time to try and make sense of it. You really need to want to read it. There are lots of references to different ICS’s but not any detail other than saying they’re at different stages, which might have been interesting for them to include in the document as from a patient perspective it would help illustrate ICS’s more.

Fiona: The document is out there in different forms and there is a survey you can fill in individually where you say in what capacity you’re filling it in. Is that sufficient public engagement?

HS: So, what has NHSE/I done to ensure it speaks to different patient/ public communities? I will ask as we need to be assured that they’ve involved Healthwatch/ VCSE partners etc. My question to NHSE/I. Have you sent it to the national HW/ VCSE orgs so they can disseminate and gather feedback?

Hazel: In the doc there’s one reference to governors and one reference to Citizen’s Panels and there’s a question about whether the system shapes their own governance but the whole issue about patient/ public representation hasn’t really been addressed. Big question about governors and will there be hospital/ trust governors or ICS governors? Due to cross-boundary issue there needs to be consistency within an ICS and across ICS boundaries.

HS: Seems that what’s on everyone’s minds is where is the patient/ public voice in the future? We’ve started an approach in the ICS, with the CP and the online model to help but that’s nowhere near enough in terms of governance etc. I’d like to think we’ll be able to shape that locally but we’ll put back that we’re very keen to ensure we have the voice of the patient/ public both around the table and we’re also engaging with them in the wider sense.

Priscilla – my thoughts have been reflected in what people have said.

Phil – much the same, expressed in different ways but similar to what was discussed at lay members meeting. People wanting to know that their voices will be heard.

Mary – Have ambulance trusts been involved and their views taken into account?

HS: Yes they take part in the conversations in their ICS’s, they may chose to put in their own organisational responses as well.

Hazel: To pick up the bureaucracy point – no one wants to see more bureaucracy in the NHS and there is concern that the role of ICS will become another layer. It’s important that we feedback we don’t want to increase bureaucracy. Also the NHS is a non-political organisation, the more you link in with local authorities, which are political the more tension this could cause. This needs to be addressed somehow in the legislation.

Phil: Interested in people’s thoughts on this. Lots of people hoping that social care, public health and the NHS will be more integrated. This report seems to take it part of the way there but it doesn’t fulfil it as the finances still go in a different direction.

Joan: The only other thing I’m worried about is older people’s views slipping through the net as we do so much engagement online at the moment, particularly when we’re talking about social care reform. How are their views getting gathered?

HS: We do have data that says there are more of the older generation on line than we think but we are concerned about digital exclusion – we need to be thinking at all times about how we reach into the digitally excluded communities. We need to ask how NHSE/I are tackling this in this work.

Mary: PHE being abolished and their commissioning roles moving, where do these proposals tie in with that?

HS: We will ask that question.

Hazel: Records/ digital – the NHS has made numerous attempts to get its house in order on digital and there’ll be an even bigger requirement now and into the future. Massive agenda around digital and security. Patient concerns will be security. Know that’s in there but just emphasising the need to get that right to build on top of it the functioning of the ICS.

KD to ask Ben G to update the CP about the digital workstream.

Priscilla: Transparency is important. There was lots of suspicion about the ICS from the inception of STPs so if we are going to build confidence the public need to be assured that there’s accountability and transparency.

Brenda: It’s key that the model must have clear accountability and collaboration and where there’s conflict there needs to be clear management and accountability processes.

HS: To summarise, the key themes that I have heard and will include in the ICS feedback to the NHSE/I document are:

Changes shouldn’t add bureaucracy

Concerns about pace and timing

Ensuring patient and public voice in governance is vital, on both the informal and formal level

Other partners involvement and ensuring that’s all considered is vital

Accountability and transparency is key.

Thank you for taking the time to read the document and give your views.

Vaccine update

CP members asked for a vaccine update.

Fiona – any general updates in terms of the vaccine etc? Feel like there’s a lack of information for the general public, that’s creating a lot of confusion. Have heard lots of anecdotes about different people being told different things. There’s something about the difference in approaches in the different areas and how that is communicated. Tell people what’s happening in their local area.

Mary – NHS E/I website has lots of leaflets about it which have been helpful. Mary has sent to the local parish councils.

Joan – since last meeting not had any information about the local hubs etc. Lack of information is concerning.

HS: Incredibly important points that can be raised at the communications vaccination call later today. Communications are being led by the national team. It’s really disheartening to hear that this is the view from members of the public. We will feed into the mechanisms to make sure the messages from the CP are heard.

The December 2020 meeting of the Citizens' Panel discussed:

1. ICS Website
2. Future of ICS’s NHS E/I document
3. Covid-19 vaccinations

ICS Website

The Communications and Engagement Associate (Adam) gave an update and a demonstration of the new ICS website explaining how it will better meet accessibility standards and help people to have a better understanding of the SYB ICS.

The Citizen’s Panel posed the following questions to Adam who answered as follows:

Should it be branded ICS?/ What are the general principles you’ve applied to the site when it comes to branding?

We work across a wider partnership than just the NHS so that’s why we haven’t included the NHS logo.

Should the future direction of travel be that ICS’s become a formal NHS statutory body we will use the NHS lozenge then.

Will it link to other partners’ sites?

Yes, it will link to all partners.

Do you have editorial control?

Yes, it’s got a good content management system behind it.

Wording is small on an ipad, making it challenging to read. Is that an issue?

Need to check that out with the web developers.

What’s the target audience for the site?

A very broad audience, we think the current site is more professional facing, we’ve tried to make this feel more accessible to the general public too.

What’s the timescale for launch?

We haven’t got one because COVID is causing us so much disruption and we’re struggling with resource in the team at the moment. Hopefully early next year.

The Future of ICS’s NHS E/I document

The Director of Communications and Engagement (Helen) drew the Panel’s attention to the recent NHS E/I document about the future of ICS’s and sent the link. If everyone could have a look and digest, and come back for us to have a good conversation about their thoughts at an extra Citizen’s Panel meeting first week in January. CP to look at doc with the 4 questions in the doc in mind.

COVID-19 Vaccinations

Helen gave an overview on the latest with regards imminent roll out of the Pfizer vaccine as well as plans for when the Oxford vaccine is licensed.

How will the records from o80 patients leaving hospital who’ve had the vaccine show that the patient has had the first round of the vaccine?

Not sure, can find out and get back to you.

Where’s the closest hospital for people from Bassetlaw? Queens Med/ STH are too far away.

This is just an opportunistic moment to vaccinate people who’re already in the hospitals whilst we only have the Pfizer vac that is difficult to transport/store, it’s not the long term plan for the vaccine roll out. In a few weeks time we hope to see a less challenging vaccine available and it’ll be available in more locations closer to where people live.

How are you managing people ringing already overstretched GP Practice?

Comms saying ‘don’t contact your practice, they know who you are, they will be in touch.’

What can we do to help?

Help promote the ‘don’t call your practice message’ in your communities.

How will it work for elderly people who have carers? Will they just get a call from the GP practice? Where will they have to go? Comms for carers need to be clear.

This should be being taken into consideration nationally. GP practices should be aware of these patients and act accordingly. If you hear of issues please let us know so we can feed it up. Helen will ask at the community vaccs board and let people know.

Timescales to tell people when they should have heard by would be good as people do slip through the net.

Helen will send an update on timescales when we have it.

In November the Citizen's Panel discussed:

1. Healthier Together Website
2. SYB ICS Update
3. Respiratory work programme
4. Maternal mental health birth trauma and loss service

Healthier Together Website

The Citizen’s Panel posed the following questions to Nicola and Conrad who answered as follows:

Will the site would involve Live Chat?

It has been looked at but at the moment they haven’t got the resource. It hasn’t been ruled out.

How will the site be promoted? Would you be asking councils to share it?

There’s a big communications plan and it includes local authorities to promote.

Can the CP have a more detailed look before it goes live?

Yes. Please email Katy if you would like to have a look at it and give feedback (Joan/ Hazel/ Fiona already noted as people who’d like to be involved).

Will you be updating the Children’s pages?

Yes. Chilypep provided information about what they would like the site to look like so we’re using that and have also spoken to the children’s participation forum at Sheffield Children’s NHS TF.

In Hampshire have they found it works to have children/ parents/ pregnant women all using the same site?

Yes they set it up based on patient/ public feedback. Families felt one overarching site to be the best way to do it. It’s worked really well in Hampshire.

Does the site link to the NHS and to the Covid test site?

Yes in quite a few places it links to the NHS site. We will need to make sure there’s a link to the covid testing site. It’s complicated because in maternity mums-to-be are tested separately.

Does the website signpost elsewhere if people can’t find what they’re looking for?

Most of the pages do.

SYB ICS Update

We updated the CP on recruitment to the Let’s Talk Health and Care membership; the new engagement report which has now been finalised; the post-covid rehabilitation pathway development; the mass vaccination campaign; the work of the Cancer Alliance.

The Citizen’s Panel posed the following questions to Katy and Helen who answered as follows:

Could we have contact details for the Cancer Alliance for any people who want to be involved?

Yes.

Do members of the CP automatically join the ‘Let’s Talk Health and Care’ membership?

It would be good for the CP to be involved so Katy will add them to the membership as all consented to this.

Do you have any data on uptake of flu vaccinations?

Yes, it’s really good. Staff uptake is brilliant. In the community there is significant uptake, we are on track to meet our targets.

Is the covid vaccine a live vaccine?

No. We would like to come back to CP with more of an update on the vaccine programme and to get your input on the comms plans etc. We could support the CP with a myth buster so that they can help get the messages about the vaccination to their friends and family.

How are you going to reach those with negative viewpoints on the pandemic and vaccine? Have you thought about getting real case studies out there?

Thank you. Your community insight to help us reach those that the national campaign materials won’t reach/ work is invaluable. Please email Helen with thoughts about how campaigns might work in your areas.

Respiratory work programme

James Scott gave an overview of a new piece of work that he is leading for the ICS around respiratory work and to ask what’s important in the shape of the pathway and the best way to engage. A design group with staff members covering many staff groups is going to be put in place. What is the best way to get meaningful patient engagement in that design group? It was agreed that Phil Moss would act as a patient/ public rep on the design group and work with Katy Davison to ensure he hears views of patients to feed into the design group.

The Citizen’s Panel posed the following questions to James who answered as follows:

Is long covid being incorporated in this respiratory work programme?

Yes. Work is happening now on long covid already as we’ve been asked to have rehabilitation in place ASAP. It isn’t just respiratory though.

We agreed to  to contact one of the members to feed into the Covid rehabilitation pathway due to their previous experiences of chronic fatigue.

Maternal mental health birth trauma and loss service

Anna Clack told the Citizen’s Panel about the maternal mental health birth trauma and loss funding bid and proposed new model.

The Citizen’s Panel posed the following questions to Anna who answered as follows:

Do you have a feel for the number of women across SYB?

What we don’t know at the moment is the impact of Covid.

Does it include men who have lost a partner in childbirth?

Anna to confirm

What about the women who don’t meet the criteria for this? How are you going to stop them falling through the gaps?

This new service is to fill a gap. For women who don’t meet the criteria for this there is already a low level service.

Will it be delivered in Sheffield?

No it’ll be delivered locally.

Are dads and partners who’ve experienced loss included?

Yes. We are also looking at support for wider family members, siblings etc.

Carol has had some discussions with other Counsellor colleagues and has provided some feedback from them. 

In September the Citizen's Panel discussed:

• Wellbeing Check-in
• SYB ICS Updates
• Engagement Updates

Wellbeing check-in

All attendees gave an overview of how they’ve been during lockdown.

SYB ICS Update

The ICS gave an overview of what the ICS’ role has been in the pandemic, what ICS work has taken place and current/ future work.

The Citizen’s Panel posed the following questions to Helen Stevens, Director of Communications and Engagement, which were answered as follows:

Q1. Could they see the Innovation HUB/ AHSN Rapid Insights work when it reports

A1: Yes

Q2. Flu vacs. Where will the people resource come from to ensure everyone can get their vacs?

A2: Usual channels – GPs. Each place is currently trying to work it out. Remains a challenge.

Q3. Phase 3 response submission due by 21 September. What’s in it?

A3: It’s a plan for what needs to happen in SYB for the next few months. Re-visiting the 5 year plan now in light of new challenges from Covid-19 such as back-log, winter, new infection control measures. Parallel plan for mental health to ensure it can meet the increasing demand.

Q4. How are GPs contacting patients?

A4: National letter going out to eligible patients but each practice will handle it differently as they are all independent contractors

Q5. Will the back-log be met? When?

A5: There’s very strong pressure nationally to deliver on the back-log. The biggest concern providers have is that a second wave would add to that backlog but all partners are working really hard to ensure another wave doesn’t cause another backlog.

SYB ICS Engagement

Katt Davison, Head of Communications and Engagement, gave an overview of the engagement work that has been taking place, including:

JHOSC agreeing that no formal consultation would be required around the proposed changes to appendectomy

October JHOSC due to hear feedback from gluten free engagement exercise

Engagement paper compiling all SYB feedback around the Covid-19 pandemic and service responses

A survey that is happening with HASU patients who have transferred from Barnsley or Rotherham since the change was put in place

Recruitment to the Let’s Talk Health and Care membership

In January the Citizen's Panel discussed:

• Avastin
• Rapid diagnostics
• Children's surgery and anaesthesia

1. Avastin

Kenny Li works on behalf of the medicines workstream for the ICS advising on the potential offer to patients of avastin. He provided an update on avastin and why the ICS is considering whether it should be offered as an treatment option for wet mascular degeneration (wet AMD). He also gave an overview of a legal challenge that has been made in other parts of the country where they’ve tried to offer avastin. The legal challenge is from the pharmaceutical industry. He asked the CP for their views on the offer, and for feedback on a patient information leaflet that has been used elsewhere in the UK, something similar to which would be required if the offer was to be made to patients in SYB. Following questioning the CP said that they fully supported the offering of Avastin as a treatment option in SYB and that they would like a further update at a future date.

Questions from the Citizens Panel, and answers from Kenny Li:

Q: How far did the NE get in their plans to roll this out before the had to stop because of a court case?

A: No avastin treatment has been given.

Q: What would be the clinician to patient conversation?

A: Open and honest. These are all your options, select the one that’s best for you. In other places where it has been offered approx. 50% of patients have opted for avastin.

Q: How are you going to ensure that clinicians don’t lead vulnerable patients into their preferred choice?

A: Rigorous audits of clinicians, thorough provision of information and detailed consent procedure.

Q: Are there any patient groups for wet amd and will we engage with them?

A: Yes absolutely.
 

2. Rapid Diagnostics

Liz Howarth who works for the Cancer Alliance on Rapid Diagnostics explained about the government’s 5 year strategy to improve early diagnosis of cancer. She explained that the UK still diagnoses at a later stage than diagnoses take place in other countries. Following questioning the CP thanked Liz for an interesting presentation and said that they though the project looked like a positive way forward and they look forward to future updates.

Questions from the Citizens Panel, and answers from Liz Howarth:

Q: What engagement is taking place?

A: Liz confirmed that patient experience and engagement is taking place to help shape the models.

Q: Is artificial intelligence being looked at?

A: Yes, for radiology in particular.

Q: How will the offer differ from what happens now?

A: The pathways will be clearer, particularly for non-specific symptoms.

Q: What about self-diagnostic tests?

A: We will definitely be looking at the opportunity to invest in more near to home diagnostics.

Q: Will you be getting volunteers to support people when they get their diagnosis?

A: That’s a good idea. The engagement we’ve done also tells us people want that. Some of this happens now but it’s variable across the patch. Part of this programme is about reducing variation.

Q: Will there be an awareness campaign around this? With GP support at the heart? People will be anxious about increased speed of diagnosis.

A: This is about addressing the issues patients have with the currently system and making experiences better.
 

3. Childrens surgery and anaesthesia update

Anna Clack who works on the Childrens workstream for the ICS spoke about changes to the children’s surgery and anaesthesia work since the CP last heard about it and talked about the new proposal to keep most surgery happening in DGHs as it currently happens, with just a small number of appendectomies on children under 8 and with complex needs moving to Sheffield Children’s Hospital. Following questioning the CP said they agreed with the project managers who are putting forward that it should be engagement not full consultation.

Questions from the Citizens Panel, and answers from Anna Clack:

Q: Would you take your kids to your local hospital with a torsion of the testes? Are you sure the care will be equal in all places?

A: Yes.

Q: Will this go to Trust Boards?

A: Yes.

In October the Citizens' Panel met and discussed:

• QUIT
• Autism
• Childrens/ Maternity webiste
• Polypharmacy
• Gluten Free

QUIT

Ginny Fieldsend who works in Public Health for the SYB ICS provided an update on the QUIT programme. The QUIT programme will see the implementation across all acute Trusts and mental health Trusts across SYB of the treatment of tobacco dependency in secondary care and then onward referral to stop smoking services. It recognises that tobacco dependency should be seen as a chronic relapsing clinical condition that prematurely kills. It is in line with commitments in the NHS Long Term Plan that by 2023/24 all people admitted to hospital who smoke will be offered Ottawa style NHS funded tobacco treatment services.

Questions from the Citizens Panel, and answers from Ginny Fieldsend:

Q: How are you going to stop people smoking outside hospital doors?

A: It won’t happen overnight, it requires a massive culture change, particularly with some of our staff, but we hope to encourage and empower them to stop smoking. NRT will be offered on admission to all patients who smoke or vape with nicotine-containing products.

Q: Is this a government priority?

A: It is in the Long Term Plan. We are the first ICS or STP to roll it out on this scale. It has been very successful at Wythenshawe  hospital in Manchester so we are basing what we do on that and what was done in Ottawa in Canada.

Q: Are electronic cigarettes a quit aid or not? And do the hospitals have clear guidance on that?

A: We are currently working through the pathways with the hospitals. We continue to follow current NICE guidance and PHE guidance on this.

Q: Is there a walk in stop smoking service for people not in hospitals?

A: All areas have a community stop smoking service but how they deliver services is different in each area.

Q: Is a 4 week follow up in a community setting long enough?

A: We will be following up their quit status at 4 weeks and 12 weeks but that doesn’t mean their community stop smoking support will just be 4 or 12 weeks, it is on a case by case basis.

Autism

Jenna Wallhead who works on mental health and learning disabilities for the ICS spoke about the outcomes of an Autism workshop held on the 10 October 2019, and the priorities identified at the workshop. The workshop was co-produced by Speak Up, and had representation from schools, health, voluntary sector organisations, social care, police, experts by experience, parents and carers. Patient stories supported the workshop. She also gave feedback on proposed next steps, including engagement with hard to reach groups.

Jenna talked about the three priorities identified in the workshop: Education, Physical health and wellbeing, and employment and asked the CP for their opinion on how patient/ public voice should play into the development of these priorities into actions going forwards. The CP felt a group of patients/ carers could be brought together to work in an ongoing way with the three task and finish groups for each of the priority areas, and that this would be better than expecting one or two people to sit on the task and finish groups and represent the voice of their communities.

 Questions from the Citizens Panel, and answers from Jenna Wallhead:

Q: Will there be a clear commitment at some point from the ICS to addressing issues faced by people with autism?

A: We will use the pledges that people made on the 10^th October to help shape a clear commitment.

Q: Are you looking at learning from elsewhere?

A: Yes, particularly Manchester and West Yorkshire. Also much of what we are hearing from patients and their carers in SYB is mirrored in national research.

Q: How much pressure can the ICS put on education colleagues?

A: We are trying to ensure their engagement in the work going forwards. There were engagement representatives on the 10^th and there was a commitment in the room to change.

Childrens/ Maternity website

James Scott who works on Childrens and maternity for the ICS spoke about a proposal to introduce a Healthier Together Website for SYB to support young people and their families with their health needs.

Questions from the Citizens Panel, and answers from James Scott:

Q: Why is it different to what’s there already?

A: This is about providing a resource that clinicians would feel comfortable signposting their patients to so clinical engagement is key to making this work. It would contain both a space for clinical professionals to store / access guidelines, etc., and public facing areas, making sure that advice and signposting matches our local clinical guidelines and protocols.

Q: If you decide to take this forward and create this for SYB will you engage with grandparents and seldom heard communities to ensure it fits local need?

A: Yes

Q: Is there a live chat function on it?

A: I understand there could be but it is not something we have explored.

Q: Can less well educated people access this website okay?

A: If we go forward and develop this for SYB we will work with people who are less literate when developing it to make sure it is right for all of our communities. That will also include helping describe and illustrate some of the conditions featured on the site.

Q: Are other parts of the country looking at having this?

A: Yes but we want to be ahead of the curve. It’s been used really successfully in Hampshire – it cut emergency attendances. It does take some time and effort to get it to take full effect, so we want to move ahead with this.

Q: Is it value for money?

A: Because we would be taking an existing site (Hampshire) and adapting it, it would be much more cost effective than starting from scratch. Evidence from Hampshire is that it is successful in supporting people to manage their own health better.

Q: What did Hampshire do to get clinician/ pharmacist buy in?

A: Lots of work – lots of going out to show clinicians and other healthcare professionals the site. We would invest in doing the same.

Q: How are you going to make sure the site is known about and used? Particularly with more seldom heard communities?

A: Clinical buy in is the key. We could do big marketing campaigns but the key to making this work will be clinicians and healthcare professionals recommending it to patients and the public. But making sure that it has a presence, e.g. via social media, fridge magnets, the things that people have in their eye lines,

Q: What are the next steps?

A: A business case will be developed. The feedback today from the CP, and some of the things you’ve pointed out that we would need to do, will help inform that business case.

Polypharmacy

Khalida Rahman who is a programme manager from the Yorkshire and Humber Academic Health Science Network (AHSN) talked about a pilot programme that is running in SYB – the polypharmacy project (Polypharmacy is the simultaneous use of multiple drugs to treat a single ailment or condition, or the simultaneous use of multiple drugs by a single patient, for one or more condition). This project focuses on piloting systematic medication reviews for people with polypharmacy. 

Questions from the Citizens Panel, and answers from Khalida Rahman:

Q: Will pharmacists go into care homes?

A: There is medicines review work happening in care homes as part of a different project. This is a small project looking at five patients who are at risk of frailty per GP practice.

Q: What’s the ultimate aim of this project? Saving money or reducing harm?

A: Both – stopping patients taking medicines that they don’t need and therefore reducing the potential harm to them is the key driver but stopping people taking medicines they don’t need will also save money that the NHS can better spend elsewhere.

Q: What are you giving people instead of medicines?

A: Sometimes they might not need medicines but would benefit from a referrals/ signposting to other forms of support.

Khalida explained that a training event had been scheduled in November with the pharmacists who would be undertaking the polypharmacy medication reviews. This would include information around the other services/support available for patients within the SYB ICS area to help them manage their long-term conditions. An invite was extended to the citizens panel members to attend should they wish as it was thought that this would be helpful for the pharmacists to be able to appreciate some members of the publics’ viewpoints.

Gluten Free

Rob Wise, Head of Medicines Management at Bassetlaw CCG and SYB lead for gluten free gave feedback on the current position regarding gluten free and public engagement. The Joint Committee of Clinical Commissioning Groups has agreed to undertake a period of engagement to assess the appetite for aligning prescribing levels across SYB. The plan is for this engagement work to be targeted engagement work. The Joint Health Overview and Scrutiny Committee will discuss this work at their next meeting.

Questions from the Citizens Panel, and answers from Rob Wise/Katy Davison:

Q: Can you access data on how many diagnosed coeliacs access foods on prescriptions vs how many don’t?

A: Only 10% of the population with Coeliac disease access prescriptions

Q: What will coeliac’s do if they can’t get gluten free products on prescription any more?

A: It is entirely possible to live a very healthy and balanced gluten free diet. Many natural products do not contain gluten – including fish, meat, fruit and vegetables.

Q: What are you asking people in this engagement?

A: A draft survey is currently being developed and we would be happy to share it with the CP for views

Q: Why are you talking about this being targeted engagement?

A: At this stage we feel it is important to have conversations with a range of stakeholders who we perceive will have an important view point on any potential change so we specifically want to target attending conversations with them.

In August 2019, the Citizens’ Panel met and discussed:

• ICS Funding letter
• Stoma
• LTP Pack
• MH LD
• The Hospital Services Review – Latest Position
• Avastin
• Other areas  

In relation to ICS Funding letter

The group questioned why GP/independent companies obtain funding but nothing is given to hospitals. This is in relation to the letter that has been sent out by Sir Andrew Cash.

A breakdown of funding will be provided and made available at the next CP meeting (and added to the agenda)

The group queried why Barnsley is not receiving any funds.

In relation to Stoma

ICS provided an update on the Stoma programme. The first phase questionnaire is now going out via GPs and Pharmacy to stoma patients (it is being sent in this way for GDPR reasons). ICS explained that demographic data has been removed. Fiona discussed that data would be a lower quality without demographic data. 14z2 approved

The group requested an update under AOB for the next meeting.

In relation to LTP Pack

ICS shared an update on the current LTP planning. The group asked for regular updates on this. The group noted the focus on workforce engagement.

In relation to MH LD

The Programme Director, Urgent and Emergency Care, and Mental Health and Learning Disabilities at the ICS introduced a new service for employment support. This is specifically aimed at supporting people with serious mental health conditions. It was noted there is an existing service for people with mild conditions.

The ICS explained that the service has a real focus on lived experience. The group felt that both the links to professionals and the limited caseloads were positives. The ICS explained this was very much patient led and discussed that ongoing employer support is key. Regarding the procurement, the ICS explained that it is currently at a standstill stage but letters would go out next week. All the panel members present approved the decision.

In relation to The Hospital Services Review – Latest Position

James Scott presented for the panel the latest position in relation to the Hospital Services Review.

It was discussed that HSR had previously recommended reconfiguration but now says no reconfiguration. The hosted networks was also discussed.

In relation to Avastin

The ICS discussed a change to medication for wet age related macular degeneration (wet ARD) and explained that clinical outcomes are the same. Matt discussed that ‘unlicensed’ was a difficult word. The group approved this.

In relation to Other areas  

Briefed the CP on the recent travel and transport group including the changes to bus times.

In June 2019, the Citizens’ Panel met and discussed:

• The Hospital Services Review – Latest Position
• Gluten free prescribing
• Stoma Briefing Paper and 14Z2  
• Panel Dates moving forwards /attending the JCCG
• Long Term Plan

1. In relation to The Hospital Services Review – Latest Position:

James Scott presented for the panel the latest position in relation to the Hospital Services Review.  Following discussions in March and April 2019, Chief Executive Officers and Accountable officers concluded that the system was supportive of the approach to shared working between trusts. Work should go forward as quickly as possible on developing the Hosted networks.

The Hosted networks will be our principle vehicle for transformation which includes:

Paediatrics – Sheffield Children’s Hospital

Urgent and Emergency care – Barnsley

Gastroenterology – Doncaster and Bassetlaw

Stroke – Sheffield Teaching Hospital

Maternity – Rotherham

Questions from the panel included:

• Our approach to deliver meaningful engagement with relevant stakeholder groups through the Hosted Networks’ programmes

2. In relation to Gluten Free Prescribing

The CP expressed that they were happy with the 14Z2

There was a discussion regarding the timeframe for submission to the JCCG.

The CP would like to be updated on a regular basis when the information they have given is included in any ICS work.

3. Stoma Briefing Paper and 14Z2  

Across England, stoma appliance use and associated spend is rising.  Stoma appliance spend was projected to reach £277m in 2018, with annual spend growing an average of 5% per year. Across SYB and Bassetlaw spend patterns are similar. Our regional stoma services are commissioned and delivered in a variety of different ways. Typically acute stoma care is provided through intensive pre-post-operative periods by NHS or Dispensing Alliance Contractor Funded Posts, which may affect the products they prescribe.

From work undertaken in Rotherham in 2011, this leads to wastage and or over/under ordering with most patients experiencing problems at some point. Rotherham significantly redesigned their pathway to address issues: however the picture across SYB is inconsistent and there are many opportunities to provide a better service for patients in a more efficient way.

Work undertaken so far has included a need to understand the local picture.  Using data mapping, a workshop with CCG heads of medicine management, local stoma nurses, business managers and colleagues from finance.  Rotherham engagement highlighted some of the issues experienced by patients. The plan therefore is to undertake additional patient engagement to re-design the questionnaire and deliver a fuller patient experience scoping exercise to shape the work.

Questions from the panel included:

•  Queries around how and where panel members be focussing their engagement

4.     In relation to Panel Dates moving forwards and attending the JCCG

Members discussed the frequency of meetings and it was agreed that moving to bi-monthly meetings was acceptable.  Members asked that meetings be arranged well in advance and dates circulated promptly and a further email should be sent following recruitment to determine whether the later meetings did in fact enable more members to attend. Members met the two Lay members who will be acting as Chairs following Tom’s departure.

5.     In relation to the Long Term Plan

Members were given the timeline for the development of the SYB five year plan. Members would like to see the draft plan once it is available. Members would like to see the engagement report once available through DJS. Members welcomed the opportunity to be involved with the planning date scheduled for the 9^th July.

In April 2019, the Panel met and discussed:

• Gluten free prescribing
• Urgent and Emergency Care Programme 999 Ambulance Calls  Diversionary Pathways
• Hyper Acute Stroke Patient Leaflet for Review

In relation to gluten free prescribing

Rob Wise, Head of Medicines Management for Bassetlaw CCG and lead for ‘over the counter’ (OTC) workstream gave a short presentation providing background for the project and led a discussion with panel members.  

Nationally the Department of Health undertook a consultation in 2017 and then agreed to recommend a limit to the prescribing of gluten free products to just bread & mixes (and no other gluten free foods).

In South Yorkshire and Bassetlaw, four areas (Barnsley, Bassetlaw, Doncaster and Rotherham) currently all have similar recommendations regarding prescribing of gluten free products, i.e. to follow the outcome of the national consultation and only prescribe bread and mixes.

• Barnsley has gone a little further in that it restricts the recommended amount of bread and mixes prescribed to 8 units per month. 
• Bassetlaw, Doncaster and Rotherham are following the Coeliac Society recommendations for the number of units of bread and mixes prescribed (an example is that this can be up to 18 units per month for a male aged 1959. 18 units is equivalent to 8 x 400g loaves of bread). 
• Sheffield consulted in 2017 and restricted the prescribing of ALL gluten free products to adults, including bread and mixes.

Conversations are now taking place in South Yorkshire and Bassetlaw about whether it is fair to local patients that where they live dictates what they can get on prescription.

It is recommended that the CCGs for Barnsley, Bassetlaw, Doncaster, Rotherham and Sheffield undertake public engagement to gather public perceptions on potentially changing the prescribing of gluten free products in some parts of the region so that it is all inline and ensures equity of access to products

The CP members felt it was important that all local areas prescribed the same and it not being a postcode lottery. They felt it should be about equity rather than cost saving.

Equity of accesses (making things equal) is a fundamental principle of the NHS, particularly if going down to the lowest option without a safety net. Further consideration should be given to rural areas where they would struggle to get products from their local store. There needs to be more signposting to online websites and companies that deliver.

Members asked questions on:

• Level of need for gluten free
• The national position
• Differences between gluten intolerance and coeliac disease
• Reaction to newly introduced changes in Sheffield and reaction of local people
• Consideration of social care aspects that can potentially offer support if items are withdrawn

In relation to Urgent and Emergency Care Programme 999 Ambulance Calls  Diversionary Pathways

The Yorkshire Ambulance Service (Yorkshire and Humber) receives 1 million 999 calls per year. In

South Yorkshire approx. 320,000 999 calls per year circa 62,000 (19.4%) don’t go to hospital.

Benchmarking in terms of national policy requirements and expectations:

• Urgent and Emergency Care National Strategy – “up to 50% of 999 calls can be managed at the scene”
• NHS Operational Plan for 19/20 – “increase rate of ‘nonconveyance’”
• NHS Long Term Plan – boosting out of hospital care, improving clinical advice out of hours and to care homes, increase number of 999 callers that don’t get to hospital (appropriately)

Some key areas were highlighted to the panel in terms of respiratory (particularly during winter demand), care homes and mental health. This work is being undertaken in association with the Academic Health Science Network.

Members asked questions on:

• Elements that need to be considered to provide more support to patients and paramedics to avoid hospital attendance
• Experiences of calling 999 and being taken to hospital

In relation to Hyper Acute Stroke Patient Leaflet for Review

This year (2019) anyone who has a stroke in Barnsley, Bassetlaw, Doncaster, Rotherham or Sheffield will be taken directly to: Doncaster Royal Infirmary in Doncaster, The Royal Hallamshire Hospital in Sheffield or Pinderfields Hospital in Wakefield for this first part of their care. All of these places provide 24/7 specialist care and clotbusting treatments for people who have had a stroke and have highly skilled, specialist staff available.

Members were presented with a patient leaflet for the regional Hyper Acute Stroke Service. The leaflet has been prepared with feedback from the Stroke Association and has had input from many partners and groups. The group provided constructive feedback in terms of the language used and the flow of information. 

The group were informed that the leaflet would only be received by those who are taken for this specific treatment and when not taken to their nearest Hospital (e.g. Patients from Barnsley, Rotherham and Bassetlaw). They were advised that their comments would be taken into consideration as it continues to be developed and assured it will be ‘reviewed’ by future patients alongside a Stroke Nurse.

In term of the design it will be considered by the stroke aphasia group (a stroke can affect one’s ability to find the right words, to understand what others are saying and/or reading and writing) who will advise on the visual layout and design. A comprehensive communications plan will support general awareness rising around the hyper acute stroke service in SYB. 

It was agreed that the Panel would not meet in May.

In March 2019, the Citizens’ Panel met and discussed:

• Healthwatch and their approach to engagement on the Long Term Plan
• Feedback from Panel members on the Kings Fund event
• Pathology services briefing
• Equality  Impact Assessments and involvement

In relation to Healthwatch and engagement on the Long Term Plan

Members heard from Healthwatch Doncaster, which is leading on the co-ordination of the NHS Long Term Plan (LTP) for Healthwatch organisations in SYB. Each Healthwatch has been asked to complete a minimum of 250 surveys and two focus groups. 

In terms of engagement activity from SYB ICS partners, there are a number of opportunities including focus groups, online surveys and regional wide engagement events between now until July. The approach will also include two events to be held at the Source on the 6th June that will run in the morning and evening, providing an opportunity for working people/different groups to engage in the SY conversation. Panel members were asked to support the conversations and raise awareness of the survey.

Questions from the panel included:

• Alignment with the Hospital Services Review
• Important to ensure local plans and regional plans were aligned

In relation to feedback from Panel members on the Kings Fund event

Three panel members had attended a recent King’s Fund event in Leeds. The event was designed for anyone working in the NHS, public, private, academic and third sector to gain a greater understanding of how the health and care system currently works and how it is changing.

In relation to Pathology services

Members read a paper about the South Yorkshire and Bassetlaw ICS Pathology Transformation Programme.

In 2017, NHS Improvement (NHSI) published requirements to change pathology services across the country so that we can all better manage the work, better plan for the future and make the service as high quality and responsive as possible.

It was agreed there wouldn’t be any impact on patients across SYB in the foreseeable future. Future updates will be shared with members when timely and appropriate.  

In relation to feedback on equality impact assessments and involvement

Members were asked for feedback on the ICS internal approach to equality impact assessments and involvement for programmes and projects.

In February 2019, the Citizens’ Panel met and discussed:

• The QUIT Programme; Tackling Tobacco in Hospital Settings
• An update on the Hospital Services Review
• Joint working approach – thoughts on the partnership working for Bassetlaw straddled by two ICS

In relation to the QUIT programme

Members were joined by the ICS QUIT programme lead and learned about the QUIT programme and the ICSs three prevention priorities.

• Embedding the treatment of tobacco dependence in secondary care
• Identification and management of clinical risk factors for Cardio Vascular Disease
• Expansion of social prescribing

Smoking remains the biggest public health threat. The QUIT programme is an evidenced based approach to targeting active smokers in hospital settings. It is an opportunity to change the culture of smoking in hospital settings as it treats smoking as any other long term condition such as blood pressure. It also seeks to give professional/clinical staff the confidence and competence to support smokers and be the best role models. The aim of the programme is to make hospital grounds fully smoke free, ask people their smoking status upon booking in and providing nicotine replacement therapy (NRT) within six hours. Consistency in this approach is imperative. 

Hospitals have a unique opportunity and provide a ‘teachable’ moment where smokers can be supported with a new approach.  

Members asked questions on:

• The likelihood of making a hospital a smoke free zone, given it is often a stressful time for people
• The impact on patients with mental health difficulties
• The medicalisation of smoking
• Extending the focus in the future to children as well as adults

In relation to the hospital services review update

A discussion was held on the latest progress in the Hospital Services Programme, specifically the current developments around Hosted Networks, including hosting arrangements, form of the networks and resourcing them. Members also discussed clinical models.

Each of the Acute Trusts in South Yorkshire and Bassetlaw has agreed to be the ‘host’ to lead a network for one of the five services covered in the Hospital Services Review (HSR). A recent press release can be found on the ICS website

Members asked questions on:

• The criteria for selecting the hosted networks
• Research into the way of working
• Engagement with staff
• Public engagement

In relation to joint working across Bassetlaw

There is a need to involve the public in the Long Term Plan in order to develop the ICS five year plan and plans are underway to ensure the people across SYB have the opportunity. Bassetlaw sits within both the SYB ICS and also Nottinghamshire ICS. The Panel were asked for their views on how best to have the conversations with people in the area, given both ICSs are carrying out engagement.

The Panel discussed how best to approach so the feedback is consistent and ensure that the work of Healthwatch and local partners makes sense to the public. This included making the narrative clear for local people and for the evaluation of the feedback to be shared across both ICSs.

In January 2019, the Citizens’ Panel met and discussed:

• An update on the South Yorkshire and Bassetlaw Integrated Care System (SYB ICS)
• Shaping the Social Prescribing offer for SYB
• Involving patients and the public in the next phase of the hyper acute stroke services work

In relation to the update on SYB ICS update

The ICS Associate Director (AD) of Communications and Engagement attended the session and thanked the Panel for their ongoing support and input throughout the first year.

Members were introduced to the Long Term Plan, which is a continuation of the Five Year Forward View. The AD explained that there is now an opportunity for the public and partners to give their feedback on the themes in the Plan in relation to SYB and that the ICS would formulate a local response to the Long Term Plan. Members heard that this would be done by getting the conversation right, looking at what conversations have already been had with people locally and then making sure we reached out to all communities. The Panel was asked to support local conversations where possible.  . 

Questions were raised around:

• Funding to support the Long Term Plan
• The importance of working with Healthwatch

In relation to shaping the SYB social prescribing offer:

Members heard from the ICS Prevention Programme Manager who explained how social prescribing is a way of linking patients and people accessing care with local non-medical sources of support. It recognises the importance of psychological, social, environmental and economic factors in health and wellbeing and health inequalities.  It can happen alongside or instead of a medicalised approach.

It is an ICS priority as is the expansion of the service offer across SYB to increase access for a wider range of residents. The ICS is reviewing the approach to working collaboratively with partners and will develop a five year discussion document and call to action. This is an opportunity for people and partners to help contribute and shape the social prescribing offer. 

The Panel was invited to be involved in the development of the work and if there were specific or other areas that should be explored as part of the strategy.

Questions and comments were raised around:

• This was one way people could take control of their own health
• The issue of rural areas and transport/access - making it difficult for people to maintain/offer a set period of support particularly for those with poor mobility.
• Rotherham has been a flagship for social prescribing but funding is an issue to sustain these sources of support.

In relation to involving patients and the public in the next phase of the hyper acute stroke services work

The Panel received an update on the work so far to transform the way hyper acute stroke services were provided across SYB. At a previous Panel meeting, members had raised the importance of the needs of patients with mental health conditions and asked that this was considered as part of the work to implement the changes. At the session today, they learned that as a result the patient flow policy had been updated. 

The Panel was asked for their views on the next phase of the engagement and how best to involve and inform patients and their families.

The Panel fed back that they felt much had been done in the earlier stages of work but after discussions shared the following suggestions:

• Think about provision for carers/family members
• Work with the voluntary sector to communicate this work and where they could support people out of area.
• Awareness raising with First Responders
• Patient information was a common theme – materials to be passed on in the back of an Ambulance
• Raise public awareness about it and promote the benefits not just the cost benefits
• Clarify expectations for the family members
• Build on the FAST campaign
• Work alongside agencies such as stroke association/those supporting carers
• Clear lines of communication to ensure that a patient is moved back to their local hospital and their family are kept fully informed

In March, the panel discussed the presentation for the forthcoming public meeting on the Hospital Services Review at The Source, Meadowhall. They gave comments on the content and asked that there was more background detail available to enable members of the public to give their feedback. They asked for more information on:

• The current workforce and where they were located
• What workforce numbers needed to be
• The current and future costs of running the services 
• Future parking provision and the costs of travel
• Safe and best working practices for the services

They made comments on:

• The importance of involving ambulance services and public transport planners and providers in the work
• The need for clarity around options (as they are developed)
• The need to consider access and public transport 
• The importance of helping the public understand how to get the best from their services
• The need to make South Yorkshire and Bassetlaw an attractive place to work

The Panel also discussed the Equality Impact Assessment for hyper acute stroke services. They noted that the proposal in the consultation had only one option and suggested that future proposals include multiple options. They were pleased to learn that clinicians had been involved in developing the proposal.

They made comments on:

• The impact on people from minority backgrounds who might find it difficult to travel further to see relatives
• The impact on people on who have low incomes and those with mental health issues, as well as their carers and family members
• The impact on ambulance services and the need for more bariatric ambulances

In May the Panel met to consider:

• The latest hospital services review presentation
• Orthopaedics and the work looking at variances in follow up appointments for people who have had hip and knee replacements
• Lower bowel testing and work looking at the least invasive testing possible
• The latest hospital services review survey

In the hospital services review presentation item, the Panel commented on:

• How an overstretched workforce was measured
• The challenge of shortage of money and representing this in the presentation
• It would benefit from a statement to say this was just one area of work being looked at
• There was too much detail and too many acronyms in the presentation - it needed to be in plain English
• The need for more clarity on accountability
• The presentation was too long and needed to be shorter
• The need for more clarity on what a hosted network was
• Using infographics to help explain statistics

In the orthopaedics item, the Panel received a presentation on work just getting underway to look at the difference in follow-up appointments for people who have had a hip or knee replacement: The Panel was keen to be involved and as well as agreeing for the trial to be a regular item for discussion, one of the members volunteered to attend meetings of the trial work.

In the lower bowel testing discussion, the Panel heard about proposals for a process that would mean patients receive the least invastive tests possible. They were asked to comment on how best to involve patients views in the design.

In the survey discussion, the Panel asked for consistency in some definitions.

In June, the Panel met to consider:

• The Yorkshire and Humber111 service re-procurement
• A campaign to raise awareness of low cost medications

They heard updates from members on:

• Patient and public voice training
• A review of engagement events being attended by Panel members

In the 111 service item, they heard about the process underway to reprocure this service across Yorkshire and the Humber.  The Panel were asked to comment on the questions in the document which asked potential suppliers to participate in dialogue (a technical term which means enter into discussions about providing the service). The Panel fed back:

• The need to consider staff handling times and the economics of making it work
• The importance of staff understanding the geography of the region and helping people to do self-support
• The need to consider media, messaging and the cost of calls
• Accessibility to reliable interpreters
• Assessing anxiety-reduction trainiing
• The importance of the interface with the ambulance service
• The need to respond to any future changes to services
• The need to gather user feedback and how this would be done
• A suggestion to give a scripted example of someone accessing the service, ensuring this was done across diverse groups (like a mystery shopper)
• The importance of handling agitated and upset callers 
• The need to ensure the provision of a quality service for non-English speakers

The Panel put forward two members to continue to participate in the procurement process.

On the item about a campaign to raise awareness of the cost of medications, the Panel heard that following a national consultation, patients would be asked to pay for low-cost prescription medicine available over the counter at pharmacies and supermarkets to reduce the cost of cheap generic medication being prescribed on the NHS - for example, Paracetemol.

The ICS is developing a campaign to support this and is currently gathering insight into the barriers that people face to understanding the issue.

The Panel was asked to generate ideas for thoughts on who best to engage with in this insight phase and for their views on how to target and change behaviours.

They suggested:

• Presence at community groups to engage people
• Conversation with pharmacists - training pharmacists to support the work
• Ensure the information is on websites 
• Family hubs 
• Job centres
• Patient participation groups 
• Social media

In relation to effective messaging, they suggested:

• Talking about how the savings could be spent
• Consistency in the message of which drugs
• Using the TV screens in GP surgeries
• Public transport advertising
• Patients having the medication written down for when they go to the supermarket or pharmacy
• Working with local communities at sessions and events
• Consideration for people with learning disabilities, English as a second language and those on low incomes

For the update from members regarding their attendance at the training event, they reported the quailty of the training was good though it would have benefitted from more examples of where the patient and public voice has been used to good effect.

In the review of members' attendance at engagement events they reported:

• The supporting materials were helpful
• Leaving time for questions was important
• Lots of questions and discussions around mental health provision and maternity and what it means for local people
• Lots of questions about the training of staff
• Questions about the need to travel to hospital
• Relief that general hospitals are not going to be reviewed for closure
• Support for the Citizens' Panel and its work
• The presentation on the hospital services review was well received, with fair challenges

The Panel discussed how they could get involved in more conversations with local people, exploring the possibility of GP surgeries and hospitals. They also asked for a list of where conversations have already taken place, to help raise awareness with their local communities.​

In July, the Panel met and discussed: 

• The re-procurement of the integrated urgent care service across Yorkshire and the Humber
• Work to review FIT testing within the lower gastro-intestinal pathway
• The introduction of a Transport and Travel Group for SYB

In relation to the re-procurement of the integrated urgent care service:

The panel discussed how their feedback so far had been integrated into the engagement section of the tendering process and their overall weight in decision-making. At least one member of the panel confirmed they were able to take part in the dialogue discussions around the tender submissions and the group were informed they would recieve the tender submissions in time to input their scores at the next meeting of the Panel (9 August). 

Panel members asked questions about whether a helpline for people to discuss non-urgent issues was still available and how signposting to the service and also local support groups could be improved.

There was also a discussion about the merit of social prescribing and whether the new service could refer to local social prescribing support as well as GPs. It was noted that this should be taken as an action to scope in the next stage of 111 procurement. 

In relation to the lower gastro-intestinal pathway:

Members of the South Yorkshire, Bassetlaw and North Derbyshire Cancer Alliance attended the discussion to ask for Panel members' views on the updated pathway and how as patients they would like to collect the FIT test and be kept updated. The group were also asked whether they, as a group or as individuals, would like to be involved in the implementation group from September onwards. Written feedback was also given by the Panel to the Cancer Alliance team. 

In relation to the Transport and Travel Group:

The proposal to introduce a Transport and Travel Group, to run alongside the Citizens' Panel, was introduced to the group with the suggestion that a member of the Panel joins the new group, acting as a liaison between the two groups as well as the Transport and Travel clinical forum. The Panel were asked for their views on the proposal and for advice on recruiting patients and members of the public to the group. 

Questions were raised around: 

• The remit of the group and where it fit within the ICS workstreams (and review of hospital services)
• The frequency of the meetings
• How the group would challenge assumptions of realistic travel timeframes in regards to public transport
• What demographics need to be considered and how would these people be recruited to make sure the group is representative 
• Will routing options be tested - eg, to note challenges with peak transport times, parking and public transport connections
• Where the meetings of the group would be held as this could pose travel problems itself

Further items proposed by the Panel to consider when setting up the group included: 

• Target dial-a-ride - people who volunteer to take people to hospital. 
• Talk to people with ideas rather than objections.
• Should parking be a guiding factor as to where specific services are based (if services are being reduced in some hospitals).
• Mix of people - villages and towns 
• Ensure we take account of how people travel to appointments 
• Frequency of travel (regular or one-off)
• Volunteer driver support (Retford Drivers, Sheffield Community Transport etc.)
• Rural villages need a say
• Drivers and non-drivers 
• Deprived areas - people with less money to travel 
• Disability Awareness - physical and learning needs 
• Transport enthusiasts 
• Someone from Passenger transport authority.
• Planning for future transport projects (e.g. train-tram)
• Recruiting - jobless in furthest possible place 
• People local to hospital – impacted by increased traffic.

In August, the Panel met and discussed:

• The latest developments in the review of hospital services
• The planned launch of the partnership as an Integrated Care System

In relation to the review of hospital services:

The Panel discussed how the report had been published earlier in the summer and ways in which we could find new ways for more people to read and understand the recommendations. They received an update on the activity being carried out by the communications and engagement team to publicise the review and subsequent report and how the process itself is expected to be ongoing until 2020. The Panel asked whether this meant their tenure would be extended given they originally made a two year commitment.

In relation to the planned launch of the Integrated Care System:

The Panel received an update on how, up until this point the ICS has been operating in ‘shadow’ form and will formally launch in October. It was noted that the ICS still won’t be a statutory organisation but will continue to be a partnership of all health and care organisations with some of the region’s chief executives and accountable officers taking the lead on particular workstreams.

The proposal for an external bulletin about the work of the ICS was discussed, including how the Citizens’ Panel could be involved to help shape the content so their work and input is more visible

In September, the Citizens’ Panel met to discuss:

• The ICS campaign with Standout Media “569 million reasons”
• Names for the newly launching ICS public bulletin
• An update on the work of the hospital services review
• Recruitment to the Transport and Travel Group

In relation to the 569 million reasons campaign:

Members of the Panel received an update of the campaign from campaign partner, Standout Media, including receiving an overview of how their feedback and suggestions had so far been incorporated into the draft survey. Panel members asked questions around how the campaign will be promoted, including:

• The limitations of social media in reaching all target audiences and how this will be addressed
• How GPs will be involved and are there any messages they can already start giving to patients
• How Parish Councils might be able to help
• Ideas for attending flu and other drop-in clinics to gather feedback
•  In relation to the naming of the new public bulletin:

The Panel discussed their name suggestions so far and ideas for wider content – eg, could the Panel members have a monthly feature?

In relation to the work of the hospital services review:

Panel members asked whether there was any update on the next stages of the work and how they, and members of the public, would be involved in next steps. A discussion was had around the next stages in the modelling of potential options and looking at the impact of them in terms of access and transport. It was confirmed to the group that work was ongoing and the recommendations of the report were still being discussed by partners before next steps were agreed.

In relation to the Transport and Travel Group:

The Panel heard that recruitment to the Transport and Travel Group had begun and is being supported by Co:Create. The Panel heard that the group will have 10 members, with two from each area; a driver and a non-driver. It was confirmed that the meetings will be bi-monthly and will include transport company input.

Panel members asked questions around:

• How the public group and the clinical group would feed in to each other
• Whether rail companies would be engaged

In September, the Citizens’ Panel met to discuss:

• The ICS campaign with Standout Media “569 million reasons”
• Names for the newly launching ICS public bulletin
• An update on the work of the hospital services review
• Recruitment to the Transport and Travel Group

In relation to the 569 million reasons campaign:

Members of the Panel received an update of the campaign from campaign partner, Standout Media, including receiving an overview of how their feedback and suggestions had so far been incorporated into the draft survey. Panel members asked questions around how the campaign will be promoted, including:

• The limitations of social media in reaching all target audiences and how this will be addressed
• How GPs will be involved and are there any messages they can already start giving to patients
• How Parish Councils might be able to help
• Ideas for attending flu and other drop-in clinics to gather feedback
•  In relation to the naming of the new public bulletin:

The Panel discussed their name suggestions so far and ideas for wider content – eg, could the Panel members have a monthly feature?

In relation to the work of the hospital services review:

Panel members asked whether there was any update on the next stages of the work and how they, and members of the public, would be involved in next steps. A discussion was had around the next stages in the modelling of potential options and looking at the impact of them in terms of access and transport. It was confirmed to the group that work was ongoing and the recommendations of the report were still being discussed by partners before next steps were agreed.

In relation to the Transport and Travel Group:

The Panel heard that recruitment to the Transport and Travel Group had begun and is being supported by Co:Create. The Panel heard that the group will have 10 members, with two from each area; a driver and a non-driver. It was confirmed that the meetings will be bi-monthly and will include transport company input.

Panel members asked questions around:

• How the public group and the clinical group would feed in to each other
• Whether rail companies would be engaged

In October, the Panel met and discussed two key areas of work:

• The South Yorkshire, Bassetlaw and North Derbyshire Cancer Alliance
• The mental health workstream of the ICS

In relation to the Cancer Alliance:

The communications and engagement lead for the Cancer Alliance attended the meeting to provide an introduction to and overview of the partnership. The group heard about the Alliance’s work to support the meeting of national cancer waiting time targets, the importance of raising awareness of signs and symptoms and patient choice around treatment options.

Panel members asked questions about:

• The equity of specialist services across the region
• The equity of diagnosis across the region and whether this varied amongst demographics
• The input clinicians have in making a difference to waiting times

Whether more cancer nurse specialists could be based within primary care to support demand

Whether people with learning disabilities had been taken into account as a target audience in any awareness raising campaigns

In relation to the mental health workstream:

A member of the mental health workstream attended the meeting and talked the Panel through the ICS’ priority areas for mental health:

1. Stopping out of area placements (including complex dementia)
2. Perinatal Mental Health (pregnancy up to 1 year after birth/including partners) 
3. Children and Young People crisis pathways – care closer to home
4. Autism/ADHD – currently there are enormous waiting lists and few support service
5. Employment – People with MH conditions/ Musculoskeletal conditions (MSK) and help people to stay in work
6. Suicide prevention – SYB has received £555,000 in funding as we have one of the highest suicide rates in the country

Members of the Panel asked questions around:

• Risk factors that increase the risk of suicide, eg deprivation, drug and alcohol addictions
• Whether the work was achievable within resource requirements
• The scale of mental health outreach and what more could be done
• Work within schools to raise awareness of mental health conditions and support available