2025 - 2026 projects

Thank you to the 490 people who took that time to share their views as part of these conversations. We helpfully were able to gather the views of people who had lived experience of these services as well as a local staff working across a range of organisations. The support of partners who helped engage people in some of these conversations on our behalf is much appreciated too. 

There were a number of key themes that stood out.

• People said mental health and wellbeing support works best when it is local, easy to access, kind and personal.
• They valued having the same person over time and being listened to without feeling rushed or judged. Support that ended too quickly or felt too clinical did not meet people’s needs.
• The service was also seen as preventing social isolation and helping people who felt unable to use other mainstream mental health services.

Overall, people told us that trusted, human relationships are at the heart of good mental health and wellbeing support. Long‑term, compassionate and person‑centred services help people stay well, cope with ongoing challenges and avoid crisis. All of this feedback is helping us look at the requirements of future support.

Thank you to the 369 people who have talked with Healthwatch about the NHS app, Pharmacy First and GP Extended Access, across the North East and North Cumbria. We have heard from lots of different people, including people who don't use digital services and have less access to services. What people have told us will be used to focus future work to improve access to primary care services. Read the report.

In December we talked with people with a learning disability who have been diagnosed with cancer, or people who have had a close family or friend diagnosed with cancer. This was to understand what help and support people got after a cancer diagnosis. This will help us understand if there are gaps in the support people for with a learning disability. Let us know if you would like to be interviewed or join a focus group. We will share what we found here when the project is finished. Thank you to everyone who got involved. Contact Julie Tucker for more information: julie.tucker11@nhs.net

Earlier this year, we asked your views on palliative and end of life care. Palliative care supports people who are living with an illness that unfortunately cannot be cured. This illness may be cancer but is more likely to be a long-term condition such as serious heart or lung disease where cure is not possible. It focuses on helping someone feel as comfortable as possible in body, mind and spirit, while also supporting their family and carers. End of life care is a form of palliative care given when a person is approaching the final stages of life.   

Dr Kathryn Hall, GP and clinical lead for palliative and end of life care for the NHS North East and North Cumbria Integrated Care Board (ICB) said: "Every person deserves compassionate and respectful care when they need it most. By taking a few minutes to complete this survey, you can help health and care services understand what matters to people, what feels challenging and what could be improved." 

Talking about death is something many people find difficult, but your views can make a genuine difference to how support is given at one of the most important moments in life.  Thank you to everyone who gave their views in our survey – 2,400 people took part. The survey asked how people how they feel about discussing death, dying and the care they would want for themselves or their loved ones. We are now analysing the results and will report the findings soon. For further information, please contact nencicb.involve@nhs.net

We spoke with people with dementia and their carers. We wanted to learn about their lives and support needs. We also wanted to test a new dementia care model and make sure it is shaped by experience. We did this by:

• Holding a “dementia dance”. We had music, a memory wall, chat tables and fun group activities. There were also creative ways to feed back.
• Visiting local groups that already help people with dementia.
• Running a weekend session for people who couldn't come during the week.

People shared lots of important things, such as:

• There are gaps in support after someone is told they have dementia.
• Services don't feel joined up.
• People have to repeat information for different services.
• Carers are not always seen or supported.
• More people need to know about dementia, particularly in the early stages.

This feedback is helping us design a dementia service for South Tyneside that puts people at the centre. The updated model includes many of the things people said they wanted. Read more in the final involvement report.

• Young people and families shared their insights about Getting Help, mental health support. The findings have been written up in this report. They will be used to shape future mental health support in the area.
• There have also been conversations with schools about support for mental health from Rise. This will be used to shape future mental health support in schools. RISE Mental Health Support- report.

Thank you to everyone who gave their views on the proposal to stop gluten-free bread and flour mix prescriptions in the North East and North Cumbria.

More than 1400 comments were received during a six-week public involvement period earlier this year. We tried to hear from groups who might be more affected than others, and asked our wide network of partners to help encourage people to participate. 

We heard from a wide range of voices and concerns and used this feedback to inform our decision on changes to gluten-free bread and flour mix prescriptions. Read the report here.

WorkWell is a new service. It aims to help people with health problems to stay in work or get back to work. There is more information on WorkWell on our website.

We have been listening to what people think about WorkWell. This has included speaking to the public, employers and staff supporting people with health and work. 

We have:

• Run a survey
• Asked community organisations to hold chats in their area
• Held public workshops
• Interviewed staff who work with people when they need support with health and work
• Tested what people think of posters and leaflets
• Interviewed small and medium sized employers

We can now share what we heard. We have three reports and a summary presentation. We also have one final chance for you to give feedback on our presentation. For those of you who have given views, we want to know if it captures what you said. 

1. WorkWell Involvement Findings. This is a detailed report that outlines what we heard from the surveys, interviews and focus groups.
2. WorkWell Public Workshops. This is a detailed report on public workshops held across the region.
3. WorkWell Summary. This brings together the two detailed reports in a summary.
4. WorkWell simple summary. This is a simpler summary presentation with audio. It gives you chance to feedback via a survey link: https://www.smartsurvey.co.uk/s/WorkWell/

Thank you to everyone who took part.

Thank you to the 80 people who had their say about the draft Northumberland Autism Strategy. We will use the insight you've shared with us to shape the final strategy. The strategy will aim to
 
- improve early diagnosis and assessment of autism,
- increase the availability of support for autistic adults and
- improve training for staff working with autistic people

Thank you to the 1,011 unpaid carers who shared their views. You told us what it’s like to be a carer in 2025. Your views will help improve support services for carers like you across the borough, as we pass on your feedback to leaders to help them shape future services.

Thank you to the 196 people who shared their views about artificial intelligence (AI) in healthcare in the North East and North Cumbria. We have analysed what you told us and written your views up as a report. We will share this report, and present the results, across NHS North East and North Cumbria so that people's views help to shape how we use AI in healthcare across our region.

98 people shared their views in the patient survey about safer prescribing of valproate and topiramate. Read the report. People told us:

- your experiences of staff explaining the risks of these medicines.

- how involved you felt in decision making and

- what would support you more. 

We have used the concerns people shared to shape services. To improve these very personal conversations. For example,

- reviewing how we talk with patients.

- making sure people get the information in the right format

- using the findings to give patients' perspective in training

We looked at Children's speech and language therapy services to see how they could be better. Staff, parents and carers shared their thoughts through a survey and through chats. 

Here are the main things people said:

• Communication - families and staff want clearer information from the time a child is referred, while waiting, during therapy, and after it ends.
• Extra support outside of therapy would help. This could include whist waiting, between sessions or after therapy ends.
• Parents and school want to be more involved. They need better tools and training to support children.  
• Waiting times affect views of the service. Wanting more help and more tailored support also affects views. 
• Where and when appointments happen can be hard for some families to manage.

We wrote a report on the findings in July 2025. Young commissioners in Sunderland then did some extra work to try and get more views from young people. Their findings were added to the original report. You can read what they found in our involvement report.

What's happening now:

• New tools to help schools and nurseries were created with Speech and Language UK. We worked with the local NHS Trust and local authorities to pay for new packages. These will help staff spot early speech problems and give help. This means more schools and nurseries have fair access to support. In time, this will be part of the route into the NHS services.
• More people who work with children will get training. This is being developed with the local NHS Trust.
• New online help for parents and carers support before, during and after therapy.
• Letters are being improved to make them easier to understand.
• A new triage system will help children who need most help to be seen faster
• Ideas to reduce waiting lists are being tested
• Clinics are moving hospital to communities
• In the future, therapists will work more closely with schools