2025 - 2026 projects

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 asking your views to help shape the service. This has included a survey and discussion groups. We are also listening to the views of staff with experience of supporting people with their health and work. 

There will be some final workshops in November. After that, we will update on the findings on this page.

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