Patient engagement report 2023-2024

Introduction

By actively involving and engaging people and communities at the heart of our health and care system, we can ensure that they shape and influence the development and commissioning of services, helping to address the health and wellbeing challenges faced by our residents.

Meaningful involvement and engagement should guide all of our work, from neighbourhood and community planning to board-level decision making processes. This report outlines some of the ways that the ICB listens to and involves local people and patient representatives across a range of projects and service areas.

The ICB has adopted ten best practice principles, set out by NHS England, which are at the heart of our ‘Working in Partnership with People and Communities’ strategy. This was praised by NHS England, who noted that it built on existing good practice and used the strengths of our partner organisations to support our work.

1. Put the voices of people and communities at the centre of decision-making and governance at every level of the Integrated Care System.
2. Start engagement early when developing plans and feed back to people and communities how their engagement has influenced activities and decisions.
3. Understand the community’s needs, experience and aspirations for health and care, using engagement to find out if change is having the desired effect.
4. Build relationships with excluded groups, especially those affected by inequalities.
5. Work with Healthwatch and the voluntary, community and social enterprise (VCSE) sector as key partners.
6. Provide clear and accessible public information about vision, plans and progress to build understanding and trust.
7. Use community development approaches that empower people and communities, making connections to social action.
8. Use co-production, insight and engagement to achieve accountable health and care services.
9. Co-produce and redesign services and tackle system priorities in partnership with people and communities.
10. Learn from what works and build on the assets of all ICS partners – networks, relationships, activity in local places.

These principles are translated into practice through the ICB’s involvement and engagement framework, which covers the different ways people and communities should expect to influence decision-making about designing, procuring and monitoring NHS services, and how to give feedback and ideas.

This annual report summarises the ICB’s patient engagement during 2023 and 2024, showing how our work aligns to each of the ten principles. While much of our work supports more than one principle, we’ve aligned it to the principle it most fits with.

Patient Engagement Forum (PEF)

Patient representatives highlighted the need for the patient voice to be heard by the ICB board in their decision making. As a result, we set up the Patient Engagement Forum in June 2023 to provide assurance that patients’ needs, views and experiences of local health and care services are part of decision making at the ICB. Members attend the public session ICB Board meetings, posing questions when appropriate. They have scheduled meetings with the board chair who attends PEF meetings every quarter and have also met with other board members to discuss topics of interest, including follow-up discussions to questions raised at the board. There is also an opportunity to have an agenda item on specific issues identified by patients and to suggest solutions. An example of this was a PEF presentation to the Board in January suggesting how PEF networking and connections can be developed.

Patient members have been selected to make the most of their connections to various communities and networks and to provide good geographical representation. The PEF also includes representatives from Healthwatch Hertfordshire and Healthwatch Essex and three ‘citizen representatives’ who sit on the ICB’s Primary Care Transformation Committee (previously called the Primary Care Board).

The PEF follows a co-production approach. It has a patient chair and patient members have worked with the ICB to develop their role and remit – they are key to leading how the forum works.

The PEF meets formally every two months, before board meetings, and presents up to four questions for the board to answer at each meeting.  Recently, these have included questions on mental health, phlebotomy, primary care, elective care and hospital provision.

Members use their insight into local views and issues to inform their feedback and interaction with the ICB Board.

The PEF is currently working on developing its people and community networks and connections so that they can bring other and more diverse patient voices to the ICB board and Primary Care Transformation Group.  Forum members are also building a social media presence as part of the plan to broaden the network.

The PEF has established three working groups – primary care, acute and community care, and mental health and learning disability.  During its first few months, the PEF has discussed the following:

• Elective care hub
• Patient choice
• Urgent and emergency strategy
• Risk stratification and data sharing
• NHS App
• Patient feedback and contract management
• The new ICS website
• Complaints handling
• Safety in primary care

Recent areas of focus for the PEF have included the development of GP practice
patient groups and supporting communication on additional roles in primary care, fully understanding patients’ experiences and maximising the impact of patient engagement. 

Patient Engagement Forum member, Claire said:

I have been a member of the Patient Engagement Forum since its inception last year and find it a most rewarding and stimulating safe space to deeply focus on patient and community led ideas, issues and solutions.

 The mixture of forum members, who span a wide age range and geography, bring welcome diversity, challenge and consensus building on everything from patient waiting lists and GP access to understanding additional roles at GP practices and how the introduction of Integrated Neighbourhood Teams will really help community-based services.

 It feels like we are very much involved in a once in a generation NHS shift towards a much more joined up health and care service which will benefit the 1.6 million patients in Hertfordshire and west Essex.

It is a total privilege to be involved with the Patient Engagement Forum.  It feels a very forward thinking, flexible and transparent collaboration between the ICS and patient representatives, all focused on growing existing community- based networks, so many more patients can be listened to and see action taken on their behalf.

Citizen representatives on the ICB Primary Care Transformation Committee

GP, pharmacy and other primary care services are the first point of contact with the NHS for most people, and we want to make sure that the ICB is close to and aware of patient experiences of primary care. The ICB has three citizen representatives who are full members of the Primary Care Transformation Committee, helping to ensure that independent patient voices are heard at meetings.

Citizen representatives take part in discussions, raise issues and ask questions in the same away as other board members, sharing their perspective as patients. They also provide an important link with local people and are building the connection with GP practice patient groups (PPGs) to gain a more rounded view of how primary care is meeting the needs of residents. These three representatives are also members of the ICB’s Patient Engagement Forum.

Working with the Patients Association to develop GP practice patient groups (PPGs)

Over this year we have been really pleased to work with the Patients Association to support the development of PPGs. This was a two-year project which ended in March 2024.

This work has aimed to broaden and diversify patient voices and experiences so as to influence services. The work has been co-designed with patients and started with two online surveys for patients, PPGs and practice staff.  The results helped to create a series of workshops which include a step- by- step guide to establishing a PPG, recruiting and developing PPGs, supporting volunteer members, using social media and communicating with patients.  The project has been led by a steering group of patients working alongside practice staff and this will continue into the next phase of the project.

A patient-led buddy scheme has also been created from this work to support PPGs who need more help to be effective. This one-to-one peer support sees PPG leads share their learning and first-hand experience of setting up and running a PPG to support the development of other PPGs.

This work has helped to expand our patient and community network which now has over 700 members, who we regularly engage with.

Alan Bellinger patient on the PPG steering group and coordinator of the Buddy scheme said:

From a patient perspective, being on this project was both a privilege and a great opportunity to learn as well as contribute. Having presented patient views of the project to an NHS England engagement conference in Cambridge, it enabled reflection on the progress that we had perhaps taken for granted in showing the added value that PPGs contribute. The way forward is flexible, transparent collaboration and action between PPGs and practice staff so that we continue the sound basis from this project and ensure there are real  benefits for both patients and GP practices.

Quality Patient Group

The Quality Patient Group was set up in 2023 to provide a patient and public perspective on quality and safety issues. This group, which is led by our patient safety partners, has been able to influence the ICB’s quality strategy, input into workforce focus groups run by the Health Services Safety Investigations Body and brought patient voices into ICB ‘deep dives’ such as on maternity services.  This group meets with the ICB’s System Quality Director every other month and is aligned to the ICB System Transformation and Quality improvement Committee. Patient safety partners feed into the Patient Engagement Forum.

Involving patients with lived experience of health services

Another group of patients, informed by their experiences, helped us by bringing a patient perspective to an ICB project to improve support for people with urinary tract infections (UTIs) and catheters.  Their input has given insight into sharing information on hydration within homes and homecare. They have also been involved in discussions about recurring UTIs and the use of Hiprex as a treatment.

We held a session with working age people with personal, family or carer experience of having a stroke. Their involvement helped to develop a project focusing on providing help for people returning to work after a stroke. This influenced how the service is offered and what support there is available within the service, in particular the access for patients to speech and language therapy as part of the service model.

Engaging patients as part of developing our new website

We held a number of patient focus groups to help shape our work to develop a new website for the integrated care system, incorporating a section on the ICB. We also asked PEF members and our reader panel to complete a survey to gather feedback on how the site could be improved. Find out more about how we acted on people’s suggestions for our website in this ‘You said, we did’ update.

Youth council

In September 2023 the ICB held its first ever youth council, demonstrating our commitment to gathering the voices of young people to help improve their experience of using local services. The youth council, which developed and recruited participants over a number of months, consists of nine young residents aged between 12 to 19 years from across the area.

The council has offered vital insight into the needs and concerns of children, teenagers, and young people when it comes to health and care issues.

One of the members, Kiera, who is an ICB youth ambassador and a young carer said:

Just under a year ago I joined the council with a simple goal: to give young people a voice.  Specifically, I wanted to help the NHS better understand the perspectives of us young people, especially when it comes to mental health.  You see, within my circle of friends, mental health isn’t just a topic of conversation, it’s a lived experience.In my view, giving youth a voice within the NHS is crucial.  It’s about ensuring that healthcare services are youth-friendly and supportive.  And it’s about making sure young people feel understood and comfortable seeking help when they need it.

The Youth Council collaborated with the Patients Association to produce eight short videos aimed at enhancing young people’s experiences at GP surgeries. The videos created by the Youth Council members are available here.  The videos were shared with ICS partners, the Voluntary, Community, Faith, and

Social Enterprise sector, and GP practices in Hertfordshire and west Essex. The videos are available on the Patients Association and HWE ICB websites, helping to promote engagement locally and nationally. The impact of these videos includes improved youth engagement methods by GP practices and Patient Participation Groups (PPGs), understanding young people’s communication styles, and increased youth inclusion in PPGs.

Youth Council members also got involved in content creation for the ICB Healthier Together website which provides health and wellbeing advice on children and young people’s health issues. Youth ambassadors reviewed previous pages in the ‘Health for young people’ area and co-produced new content. The co-produced pages are now accessible to young people in Hertfordshire and West Essex. Health for Young People – Hertfordshire and West Essex Healthier Together (hwehealthiertogether.nhs.uk).

Patient and Community Network

We continue to broaden our ways of connecting with local people and communities. One of the ways we communicate and engage on important issues is with the ICB’s 700+ strong patient and community network. This brings together patient representatives and staff from GP practices and other NHS services, as well from voluntary and community organisations across Hertfordshire and west Essex. We keep this network informed on local health news, and hold sessions to share more detailed information and gather feedback. Recent activity has included:

• Getting patients and practices involved in research by increasing understanding of how patient experience can influence research and outcomes for patients.
• Discussions on a toolkit for GP practices to explain to patients about the range of support from different health professionals in primary care, which has recently been completed.

East and North Hertfordshire Community Assembly

The ICB worked with Healthwatch Hertfordshire to develop a community assembly model. This is a forum for patients, carers, local councils and community, faith and voluntary groups from across our area who are informed and engaged and want to help shape and improve their local health and care services. It holds virtual meetings every other month which are open to anyone who wants to attend.

This is an important way for the ICB to hear understand the challenges, needs, and views of people in east and north Hertfordshire, share information, and ensure that our work and that of the benefits from their insight. The Community Assembly supports engagement by East and North Hertfordshire Health and Care Partnership.

At a recent meeting, participants took part in discussions around ensuring that the voices of people with relevant experiences were included in decision making, developing engagement around key themes, and using this to help address issues such as health inequalities.

West Essex Citizens’ panel

The panel, which was established in 2021, continues to be a part of the wider patient network, providing a way to focus specifically on feedback from those patients living in west Essex.

There are around 50 members, some who are involved in other areas of the ICB as volunteers including the Patient Engagement Forum. The panel represents a number of communities, including members from ethnically diverse backgrounds and different age groups.  The west Essex area includes the town of Harlow, which includes a number of areas of relative deprivation, which is a major determinant of health inequalities.

South and West Hertfordshire Co-production Board

The South and West Hertfordshire Health and Care Partnership has made a commitment to adopting the co-production model as its default approach to all of its work. This means that the board oversees and provides guidance on how best to use co-production, as well as other forms of involvement and engagement, in driving and delivering service improvements. The co-production board is chaired by Healthwatch Hertfordshire and has  representatives from organisations involved in the work of the HCP, together with patient and public volunteers. Two of the patient members link directly into the ICB’s Patient Engagement Forum.

Working with the Health Services Safety Investigations Body (HSSIB)

The ICB has worked with the Health Services Safety Investigations Body (HSSIB) to run three in-person and one virtual focus group to get some understanding about people’s experience of care, particularly primary care.  This insight will inform national investigations and the work of the ICB. There was a particular focus on workforce.

Dr. Nick Woodier, senior investigator with HSSIB said

We have been so grateful to the ICB team for helping us hear the voices of patients and the public. The team helped us engage with people in the region, allowing us to gain insights from over 30 people that have contributed to our work to help make the NHS safer for patients.

Using patient feedback to ensure equality of access

A Hertfordshire patient with sight impairment raised through the Patient Engagement Forum a concern about pharmacies putting stickers with dosage details over the Braille on medication packaging.  This was raised with the ICB’s Pharmacy and Medicines Management team and in response Community Pharmacy Hertfordshire responded that they would send out reminders to all pharmacies to ensure they put the label in the correct blank spacing where possible. They would also encourage pharmacies to be aware of patients with sight difficulties, record this clearly and flag on the Patient Medication Record (PMR).

Review of policy on specialist fertility treatment

We successfully engaged lesbian, gay, bisexual, transgender, queer or questioning, intersex and asexual (LGBTQ+) people as part of a review of the ICB’s policy on specialist fertility treatment. Although the review was not seeking to make significant changes to the current policy, there were some key sections that would impact on various groups including women, non-binary and transgender people.  For example, the review intended for the policy to undergo some amendment in its language to recognise transgender and non-binary people. 7.5% of the 138 people who gave their views by completing a short survey declared their sexuality as other than straight and 0.7% responded that their gender was not the same as their sex registered at birth.

There were a wide range of views expressed on the issue of transgender and non-binary inclusive language. Some felt that we shouldn’t be concerned with this issue. Others said that the policy needed to acknowledge transgender and non-binary people and to allow fair access. We used the feedback from the engagement as part of developing our updated policy.

Work with Healthwatch Herts and Healthwatch Essex

Healthwatch Herts and Healthwatch Essex were commissioned by the ICB’s primary care team to undertake a series of research projects.

These are some of the recent ones:

• Carers support from GP services
• Community pharmacy
• Broxbourne residents GP access
• GP access for parents and carers

Findings, with recommendations, are reported to the ICB’s Primary Care Transformation Board and actions agreed.  As an example, the ICB has worked with Carers in Hertfordshire to run focus groups for unpaid carers to understand in more detail their experiences of accessing primary care services.  The findings from these focus groups will be reviewed and taken into account in decision making.

We have also worked with Healthwatch Herts and Healthwatch Essex to look at how we can make our research more accessible and engaging to all our residents. This work focused on local people with personal experiences of mental health issues and addiction, those with a learning disability and members of the English Traveller community and has provided powerful insights to inform practice.

This research forms part of the Research Engagement Network programme which will continue to be delivered through local voluntary, community, faith and social enterprise partners. We are working towards recruiting a diverse mix of Research Champions who will help promote research awareness, engagement and delivery.

Healthwatch Hertfordshire chair the East and North Herts Community Assembly and the South West Hertfordshire Co-Production Board.

Reader Panel

The ICB’s reader panel reviews and provides feedback on patient information that local NHS organisations are producing.  Made up of around 60 patients, carers and other residents panel members give us their views on whether information is easy to read and understand, if it is accessible and free of jargon, and if the level of detail is appropriate.  This feedback has led to changes in content to make information clearer, using more familiar words, avoiding ambiguity and improving layout.

During the last year the panel have commented on patient information leaflets from the ICB’s pharmacy team, and from Hertfordshire Community NHS Trust, materials for a hypertension (high blood pressure) campaign, public information about the different healthcare professionals that patients can see in primary care, and our new, more intuitive and searchable health and care system website.

Keeping in touch

We keep in touch with people who are interested in the development of their local health services by email, social media, virtual meetings or occasionally in person.  Examples include:

• Having our ICB Board and Primary Care Transformation Board meetings in public, whether the meeting is online or in person.
• Producing a fortnightly e-newsletter, Health Matters (previously called ICB Update) which is distributed to over 5,000 subscribers.
• We have added Nextdoor to the social media channels we use to connect with local people. Nextdoor allows us to reach a large audience of over 290,000 people across Hertfordshire and west Essex. It is also a powerful platform for locally targeted neighbourhood-level information, such as vaccination clinics or temporary service restrictions due to an emergency such as an IT outage or flooded premises. Nextdoor posts on issues such as industrial action, diabetes and blood pressure checks have had high public engagement.

Cancel out Cancer

February 2024 marked the fifth anniversary of the launch of Cancel out Cancer, a volunteer-led programme of free information sessions about symptoms, screening and the positive changes people can make to their lifestyle to reduce the risks of some cancers.

With a mix of face-to-face, virtual and short sessions and a focus on reaching people and communities facing health inequalities. Sessions are organised every couple of months, with a recent session having over 25 people registered.

Participants are surveyed before and after each session to see what impact this has had on their understanding of cancer and motivation to take action to reduce cancer risk. Feedback shows that sessions have led to a doubling in participants’ confidence in recognising cancer symptoms from around 37 percent beforehand to 80 percent (or higher) after taking part in the session. Nearly all participants said they would take advantage of future screening opportunities, 81 percent said they would be confident to approach a GP within a week of symptoms appearing and the majority (83 percent) said they would change their lifestyle to reduce cancer risk.

Herts and West Essex diabetes support group and health webinars

The Hertfordshire and West Essex patient-led diabetes support group was launched in March 2022 with substantial support from the local integrated diabetes service. It runs free monthly webinars and, so far, over 1500 people have attended at least one webinar. Patients who attend the sessions  are better able to manage their condition themselves and make lifestyle changes to minimise their need for healthcare support.

Founder of the support group, Alan Bellinger said:

This local patient-led initiative would not have been possible without significant support from healthcare professionals across the ICB, and the encouragement from the integrated diabetes service. Together with the proactive support that the ICB’s Long Term Conditions, Primary Care and engagement teams have provided, this has been critical in gaining that level of endorsement.

South and West Hertfordshire Co-production Board

As previously described, the South and West Hertfordshire Health and Care Partnership has made a commitment to adopting as its default approach to all of its work. This means that the board oversees and provides guidance on how best to use co-production, as well as other forms of involvement and engagement, in driving and delivering service improvements. Membership of the co-production board includes representatives from organisations involved in the work of the HCP together with patient and public volunteers. Two of the patient members link directly into the ICB’s Patient Engagement Forum.

Governance and service redesign

Patient involvement in our work to redesign services, and to develop information campaigns and other projects supports our work to create patient-centred services that reflect people’s needs and priorities.  Here we outline some recent examples of this.

• A number of people responded to a request from our quality and nursing team to help develop a quality improvement network. The QI network, which is now established, provides an opportunity for clinicians, patients and other stakeholders to share best practice and improvement opportunities across Herts and west Essex.
• We asked patients for their views on initial design ideas for the ICB’s high blood pressure campaign- their feedback influenced the final campaign.
• The PEF, patient representatives, and a wider group of patients told us what they thought about a survey on how people use urgent and emergency care services, and they commented on the ICB’s draft urgent and emergency care strategy.
• The ICB commissioned Healthwatch Hertfordshire to find out about unpaid carers’ experience of accessing primary care services.  Following the research the ICB worked with Carers in Herts to run three focus groups for unpaid carers to explore in more detail their experiences, good and bad, of accessing their GP.  Good practice examples will be shared with all GPs in the ICB area.

Building strong networks with system communications and engagement experts

Our ICB communications and engagement team is well connected with local and regional peers from our partner organisations.  We chair a monthly meeting for Hertfordshire and west Essex ICS professional communications and engagement leads to exchange ideas and share best practice, play a significant role in the communications cell of our Local Resilience Forum, and attend weekly regional and monthly national meetings hosted by NHS England. We have developed productive and mutually beneficial relationships with district, borough and county council teams who help to disseminate essential information to their communities, through their communication and engagement channels and networks and their community assets. 

Training for ICB staff

To share best practice amongst ICB staff, engagement specialists from the ICB’s communications and engagement team ran development sessions for other ICB colleagues to help them better understand the importance of involving local people when delivering and developing services. Members of the primary care and quality and nursing teams joined these events and learned about how seeking out and hearing patients’ views and experience helps the ICB to do a better job.