children eating school lunch


Monday 10 May 2021 sees the start of Coeliac Awareness Week, led by Coeliac UK, with the message ‘#ShineALightOnCoeliac’.

As part of this, our Engagement Officer Helen Brown, shares her experiences of Coeliac disease, since being recently diagnosed with the condition.

Helen says “I was diagnosed with coeliac disease only a few months before the start of the Covid-19 pandemic after several months of suffering gastro-intestinal symptoms. This year I am writing about my experience to play a part in raising awareness of the condition, as Coeliac UK estimate that around half a million people in the UK are living with undiagnosed coeliac disease.

“Coeliac disease is a condition where the body’s immune system attacks its own tissues when you eat gluten. This causes damage to the lining of the gut and means the body cannot properly absorb nutrients. Coeliac UK estimates that it takes an average of 13 years for diagnosis as symptoms are so wide-ranging and are similar to other conditions such as IBS. I count myself lucky that my GP was proactive in requesting blood tests; I know the outcome for others is not as positive.

“After diagnosis I was told the only treatment for the disease is to adhere to a life-long gluten free diet, but I did not realise exactly what this entailed. It is not just a case that ‘you can’t eat bread or cakes’ as a friend so delicately put it. As well as substituting breads, flours, pasta and sweet treats for gluten free counterparts (many of which do not taste that great!) gluten is an unexpected ingredient in so many foods from sauces to soups to crisps and chocolate. There is also the worry of cross-contamination when preparing food including a need for separate butters and toasters at home.

“These things, alongside the reduced enjoyment of eating out/getting takeaways – no longer having the ability to be spontaneous when choosing venues, having substandard/limited food choices, feeling anxious about possible cross-contamination, or having to explain your condition to restaurant staff you have never met – made the first several months after my diagnosis quite an unhappy time.

“As time has gone on and my symptoms have improved, managing my condition has got easier. My gastroenterologist and dietician have been great and lockdown in some ways has helped as we have had significantly more time to experiment with cooking and baking gluten free recipes at home and the choice to eat out has been vastly reduced.”

Ceoliac UK’s #ShineALightOnCoeliac campaign this year recognises the issues Helen talks about. The chance to get together with family and friends makes summer seem brighter but for many people with coeliac disease, particularly children and young people, trusting others to provide gluten free food can cause feelings of worry and exclusion.

Further information on the campaign can be found at CoeliacUK. Alongside activities and awareness raising there’s also lots of support and information for the gluten free community and an online tool to encourage diagnosis.

If you have coeliac disease and would like to share your experience of healthcare services in the diagnosis and management of your condition, please get in touch.


Home Care in Northumberland

Home Care Services Project

Home Care Services in Northumberland – help people to share their experience

We are looking for someone to carry out a focused project which will gather the experiences of people who receive paid for home care services in the county. The document below sets out the rationale and application process for those interested in carrying out this work.

The project fee is £5,000 and the deadline for applications is 17 May 2021. The work is to be carried out from mid-June to September 2021.

For an informal pre application discussion please contact Derry Nugent, Project Coordinator Healthwatch Northumberland, email: or call: 07590 880016.

Contract purpose and focus

In 2018/19 Healthwatch Northumberland worked with Carers Northumberland to gather the experiences of people using home care services and that of their family carers. It was led by a group of family carers in the Coquet Valley where, at the time, there were major challenges in providing home care services. Northumberland County Council Adult Social Care managers welcomed the final report and they said they would be interested to hear from people in other areas of the county. This project will gather those experiences.

The pandemic has given further reason to revisit the study. A recent national report by the National Institute for Health Research highlighted that people receiving paid for care and people who were providing unpaid care (carers) were having to make decisions about continuing with paid for care and using other services during the pandemic based on the risks involved in different people entering their homes and
lack of PPE.

Respondents to the Carers Northumberland Annual Survey also reported a reduction in home care and enabling services during the pandemic. Overall we want to know what has worked well and people would like to see happen to services in the future.

Full details: Understanding the experience of people using Home Care Services in Northumberland Project



Care home visit

Care home visits: public forum

At our previous forums we have heard how visiting restrictions in care homes have affected people living there and their relatives. We have also heard about other ways people have been keeping in touch during Covid-19 and experiences of the changes to allow one or two designated visitors for in-person visits. We have also heard from representatives at Public Health and Northumberland County Council on the visiting guidance for care homes.

At our next forum on Friday 4 June at 10.30am we’d like to hear about your experiences now we are two months into the changes in visiting policy. We would also like to hear your feedback on preparing for you and your loved ones to have visits outside of the care home.

We will also be sharing the results of our recent online surveys for care home staff and relatives/friends of those living in care homes and looking at the next steps for this feedback moving forward.

If you would like to register for the event please contact Helen Brown at: or call us on 03332 408468.

If you cannot come along but have a question you would like an answer to, send it to us and we will ask it for you.

More on care home visiting guidance

Getting out and about

We’re making plans to get back out in local communities as soon as it is safe to do so this summer. Our role as independent champion for people who use NHS and social care services involves listening to people from all over the county about their views and experiences of using services such as GPs, dentists, hospitals, mental health services, care homes, pharmacies and NHS 111.

We have done this in lots of ways during the pandemic but speaking directly to people in communities across Northumberland is a big part of what we do. We are now planning how we can get back on the road when government guidelines allow.

Can you tell us how you would feel about us coming along to a venue near you – outside – by answering a few questions? Your feedback will help us make decisions about we work this summer. Thank you.



Getting back on the road

Part of our role here at Healthwatch Northumberland is getting out and about to communities across the county, to hear people's views and experiences of using NHS and social care services.

Please wait...

Kooth Q&A

Providing information about local health and care services is part of the core work of Healthwatch Northumberland, and mental health services for children and young people is one of our key priorities.

In June 2020 NHS Northumberland Clinical Commissioning Group (CCG) commissioned Kooth, a free online mental health support service for young people aged 11-25 years.

Watch this video to find out more.

We were therefore delighted to host an online seminar on 10 March 2021 with Malcolm Connelly, Engagement Lead at Kooth who told us about how the service works and how parents, carers and professionals can signpost young people to it.

Below are the questions from the audience and Malcolm’s answers which include links to the Kooth site and how to contact Malcolm for more information.

If you or a young person you know have used Kooth, we would like to hear about your experience. Share your feedback with us.


How can parents check the suitability of Kooth?

There are demos available to see what the site looks like from a user’s perspective however the content will look different depending on the age of the child. A demo can be arranged by emailing Malcolm Connelly ( There is also information on the Kooth website and Malcolm has put together a parents’ information letter.

Kooth follows strict safeguarding guidelines and young people will only speak to trained counsellors when using the platform. Any discussion is via pre-moderated threads.

How can I get resources to share to promote Kooth?

If you work for an organisation which supports children and young people, get in touch with Malcolm to add your details to his database of contacts. There are also A4 posters and wallet size cards available. Visit the Kooth Promotion Hub to find resources to promote Kooth.

Do you promote Kooth to schools and youth groups?

Yes, Malcolm does presentations in schools and for youth groups although it is more difficult at the moment with restrictions. Malcolm is currently only able to offer virtual presentations but is hoping to get back into schools later in the year.

What does Kooth mean?

During initial discussions about what to call the platform, a group of young people took the word ‘uncouth’ and flipped it to the more positive ‘Kooth’.

What is the adult equivalent of Kooth?

Qwell. This is currently only available to teachers and support staff in Northumberland.

Is there any data to show the positive impact that Kooth is having on young people and what are the recurring themes?

Monthly and quarterly reports are sent to the CCG which commissions Kooth, however these have to be requested and authorised for anyone else who would like to see them.

Is there any reason for Kooth starting at 11 years old?

This age was agreed with the CCG and is relevant as it is the start of secondary school. Around the age of 11 or 12 children are old enough to understand more and benefit from the support service. Gillick competency is assessed (more details here).

Is Kooth safe for autistic people?

Kooth is a safe space but we understand some young people may struggle with the text-based service and are constantly working to make Kooth fully accessible for all.

You mentioned face-to-face interventions. How does that work?

This is not currently available in the North East.

Are you getting into schools at the moment with the current restrictions?

Yes, but not as much as usual. Malcolm is hoping to get back into schools regularly by September.


Find out more about the support available for children and young people in Northumberland.

Is NHS 111 First making a difference?

From 1 December 2020, the NHS has introduced a new system called NHS 111 First. This means that NHS 111 can now book you an appointment at your local A&E or get you an urgent appointment at an alternative health service. The NHS 111 First campaign encourages people to call NHS 111 before going to emergency departments.

During COVID-19, people have relied on NHS 111 more than ever to get urgent medical advice. Healthwatch England’s latest research looks at people’s experiences of NHS 111 and awareness of the new A&E time slot booking service.

Find out more about NHS 111 First

To better understand public attitudes towards NHS 111, including awareness of the new services offered by NHS 111 First, and support the best possible roll-out of this new service, Healthwatch England commissioned YouGov to run a UK representative online poll of 2076 adults (18+) between 27 – 28 January 2021.

Through the Healthwatch network, the views of over 400 people who had used NHS 111 in the last six months were also recorded.

  • The majority (84%) of polling respondents said that they were aware that they could call NHS 111 for urgent medical advice. Almost three-quarters (70%) agreed that they were more likely to call NHS 111 than go straight to an emergency department when they had an urgent medical problem.
  • More than three out of four people who had used the service and got through to an advisor (79%) felt they had got the help they needed.
  • Almost three quarters (72%) of those that have used the service agreed that they generally had positive experiences when they called NHS 111​, while 12% disagreed and 13% were neutral.
  • Not feeling confident in the advice given by NHS 111 call handlers was a common issue. Only 55% of all polling respondents said they felt confident that when they phoned the service, the person they spoke to would be qualified to help them.
  • Those who did use NHS 111 First and had a timeslot booked for them at A&E were highly likely to rate their experience as very good, suggesting that that the new system is working when people are given the option.
  • However, awareness of the new service is low. 80% of polling respondents were not aware that NHS 111 could reserve timeslots at GPs and 73% were not aware they could reserve timeslots at A&E.

Read the full report


Care Home Visits: Public Forum

At our online forums recently we have heard how visiting restrictions in care homes have affected people living there and their relatives. We have also heard about people’s experiences of other ways of keeping in touch during Covid-19. From 8 March those who live in care homes will be able to receive one regular designated visitor.  We want to hear from you about your experience of this change, and what would help as restrictions are gradually eased.

We are holding another online forum on 31 March from 2.00 – 3.30pm where Dr Jim Brown, Consultant in Public Health at Northumberland County Council and Alan Curry, Senior Manager – Commissioning Northumberland County Council, will be there to answer your questions on the visiting guidance for care homes from a public health and county council perspective and what we may expect for care home visits in Northumberland as we move on from Covid-19.

If you would like to register for a space please contact or call us on 03332 408468.

If you cannot come along but have a question you would like an answer to, send it to us and we will ask it for you.

You can also tell us about how you’ve kept in touch with relatives in care homes here



More on care home visits guidance as of 8 March

International Women’s Day 2021

International Women’s Day takes place on Monday 8 March and this year’s theme is “Choose to Challenge”. The theme focuses on the idea that we can choose to challenge and call out gender stereotypes and bias, and we can choose to seek out and celebrate women’s achievements to collectively create an inclusive world. From challenge comes change.

To celebrate International Women’s Day, Northumberland County Council asked Healthwatch Northumberland to create a short video on this year’s theme which will be part of a live streamed event on the day.

Our Project Coordinator, Derry Nugent, talks about some of the health inequalities and bias that women face. For example, did you know coronary heart disease kills twice as many women as breast cancer in the UK? However due to a common misconception that heart disease is a man’s disease, women face inequalities in awareness, diagnosis, treatment and care following a heart attack.

Hear what Derry has to say on the video below, along with Stephanie Edusei, Chief Executive of St Oswald’s Hospice, and Fareeha Usman, Founder and CEO of Being Woman.

Watch the video here

If you would like to know more about the issues raised in the video, you can read more at the sources below:

British Medical Journal

British Heart Foundation

Mental Health Task Force

health and social care Northumberland

What you told us: October to December 2020

As the independent champion for people who use health and social care services, Healthwatch Northumberland is a listening organisation working across Northumberland, interested in what people think is working well in services and what can be improved. We act on what people are saying, sharing their views with those who have the power to make change happen. We also help people find the information they need about services in their area and record this as ‘signposting’.

People who use health and social care services tell us about their experiences throughout the year. This report shares a summary of the feedback collected from October to December 2020. During this period, we have continued to work in different ways due to the continuation of the Covid-19 pandemic. The next report will cover January to March 2021.

This quarter we received feedback and enquiries from:

• Telephone calls, emails, website and social media (73%)
• Talking to people at online engagement events (25%)
• Through a third party (2%)

Areas of Focus
We are open to all feedback about health and social care services. Responses to our 2020 Annual Survey helped us to identify a specific Areas of Focus which we are prioritising in 2020/21; this includes mental health services, dementia and GP services. Covid-19 has meant changes have been made to health and social care services. Patients and carers’ experiences and signposting requirements are likely to have been different during this time. For this reason, we have also chosen to focus on any feedback we receive which is related to covid19 and these changes.


Read the October to December 2020 Report