Based on their findings, Healthwatch Gloucestershire has made the following recommendations to help services better meet people’s needs.

• The process for finding paid care at home services needs to be made easier to follow, with all information available in one place, both online and in print.
• Information should use clear and simple language and highlight the different types of paid care at home services, the things people should consider when seeking home care, and what they need to do.
• The costs of care should be completely transparent with no ‘hidden costs’ and this should be explained clearly and fully without people needing to ask for more information.
• Everyone looking for a care provider should be given a copy of the Gloucestershire Care and Support Guide, with printed and digital versions available.
• Face-to-face support and advice should also be available for those who require it.
• Information should be given to everyone looking for social care, irrespective of their financial situation, whether their care is paid for by the local authority or they are paying for private care.
• Paid home care services should work with different communities to understand and, where appropriate, to meet cultural requirements, for example, by using language people understand and providing appropriate food.

Helen Webb, Healthwatch Gloucestershire’s Manager said:

“Over the last few years, we’ve received mixed feedback from the public about paid care at home services, so we decided to investigate further. People have told us they struggle to find good, accurate and up-to-date information about what paid care at home is available. We’ve also heard from people who have received wonderful care at home as well as from those who have not. We have shared our full findings and recommendations for change with health and care leaders in Gloucestershire to help them understand and address people’s needs and concerns.”

Jenny Cooper, Head of Integrated Commissioning (Older People, Integrated Adults Commissioning Hub), NHS Gloucestershire/Gloucestershire County Council, said:

“We agree with the recommendations and find that they give a useful focus on improvements that can be made to our system. Some of these are already in development and others can be enhanced as suggested… some of the key messages have been heard from other sources such as carer feedback, so we recognise them as areas to address… the report comes after a period of extreme and unprecedented strain on the care market and at a point when capacity is at an all-time low… Whilst as commissioners we want to ensure that the market can provide a personalised service to all individuals the reality is that this is sometimes difficult to achieve.”

Read the full report: People’s experiences of paid care at home services in Gloucestershire, which includes case studies and public feedback alongside research findings.

Case study:

Finding the right paid care so that 80-year-old Freda could return home from hospital

Freda is in her late 80’s and has lived on her own for the past 20 years, following the death of her husband. She has been living with dementia for the past seven years, and until the pandemic, remained living independently, although recently the family had noticed a deterioration in her health. Following some mobility issues in 2021, Freda was admitted to hospital.

Her family knew that Freda could not return home without a Social Services Assessment and a Care Package in place, but they were frustrated that it took six weeks for this to happen. During this time, they noticed that Freda was not doing well being away from her own home.

The family had no idea how or where to begin to find long-term paid home care for Freda. With no support and advice offered or easy to find, they described the process of finding paid home care as ‘a complete nightmare’. Freda’s daughter spent hours researching care providers. After coming across the Gloucestershire Care and Support Guide online, and then becoming aware of the Care Quality Commission’s website which shows ratings for care providers, she contacted several care providers.

The family quickly rejected those who showed no compassion or warmth over the phone, but eventually found the right provider for Freda’s care needs and their high standards of compassion and professionalism. The family are delighted with the care being provided and think that all the paid Care Workers who attend to Freda are wonderful.

Freda’s daughter Sarah said: “We are very happy with the way things have turned out with the care provider, although this is down to the research I undertook, and a little bit of luck. I am shocked at the lack of information and help given to families who are having to navigate the system in a short space of time. I strongly believe there needs to be better processes in place which are clear and easy to follow for anyone in this situation in the future.”

The year in numbers

• In total, 4,714 people shared feedback or sought information about health and care services.
• 1,798 people shared their experiences of local health and social care services.
• 2,916 people asked for information, advice, and support on how to get the care they need.
• 62 volunteers supported Healthwatch Dorset last year, giving up 140 hours of their time to make care better for their community.
• Healthwatch Dorset published five reports about the improvements people would like to see to health and social care services

Healthwatch Dorset’s reports and how public feedback has made a difference

1. Dorset’s COVID vaccination programme: Dorset NHS Clinical Commissioning Group used public feedback from this report to improve their communications about the vaccination programme and to inform their decision to set up up additional vaccine pop up centres at community venues and churches.

2. A&E at Poole Hospital and Dorset County Hospital: Most people told Healthwatch Dorset they were happy with A&E services but there were some areas for improvement. Both hospitals have used public feedback to improve facilities, to develop clearer information for patients, and to enhance staff training. The new A&E department at Dorset County Hospital will be informed by this report.

3. Tackling inequalities in health and social care – Promoting the voice of Dorset’s homeless community. This report highlighted the health and care needs of people who are homeless and the challenges they face when trying to access vital care and support. It has influenced Dorset and BCP Councils’ homelessness strategies, and the Care Quality Commission has used the report to inform their new strategy to tackle inequalities in health and social care.

4. Young people’s health and care services: Young people told Healthwatch Dorset they want services to communicate better and to improve how care is coordinated. BCP and Dorset Council’s Special Educational Needs offers have been informed by this report. Healthwatch Dorset are now involved in Ofsted inspections, and they continue to work with Children’s Services and the local NHS to implement young people’s recommendations for improvement.

5. Accessing NHS dental Care in Dorset: This report alerted NHS leaders that people were struggling to get NHS dental care in Dorset, as they are across the country. Healthwatch Dorset’s findings have supported Healthwatch England’s call for the Government and NHS England to reform NHS dental care to tackle the problems of access and affordability

Announcing the annual report, Viv Aird, Chair of the Healthwatch Dorset Steering Group, said: “We are passionate about giving people the opportunity to share their experiences of using services and making sure their feedback reaches the powers that be and leads to positive change, locally and nationally. Our annual report shows some of the ways we achieved this last year. Going forward, we are committed to championing better care for everyone, including those who often go unheard. We will continue to work closely with the NHS, local councils, care providers and the voluntary sector, sharing people’s concerns and queries to help improve services and to reduce the barriers people face when trying to get the care they need.”

Healthwatch Dorset priorities for 2022-23

• Dentistry
• Access to GPs – for people with mental health problems, children and young people
• Carers – supporting loved ones leaving hospital to receive care at home and in the community.

Read the full Healthwatch Dorset Annual Report 2021-22 to find out more about their work during the past year, including findings and recommendations for changes to services.

The year in numbers

• In total, 2,858 people shared feedback or sought information about health and care services.
• 1,790 people shared their experiences of local health and social care services.
• 1,068 people asked for information, advice, and support on how to get the care they need.
• 25 volunteers supported Healthwatch Gloucestershire last year, giving up 74 days of their time to make care better for their community.
• Healthwatch Gloucestershire published six reports about the improvements people would like to see to health and social care services.

Healthwatch Gloucestershire’s reports and how public feedback has made a difference

1. Hospital discharge in Gloucestershire: Patients and carers told Healthwatch Gloucestershire that the experience of being discharged from hospital and moved between services for ongoing care can be confusing, disjointed, and stressful. This issue is being monitored by governors at the Gloucestershire Hospitals NHS Trust as it links with concerns around delayed discharge due to the difficulties in social care provision.

2. Social isolation and loneliness in Gloucestershire: Healthwatch Gloucestershire investigated people’s experiences of social isolation and loneliness and used their feedback to show service providers and commissioners how people could be supported. Gloucestershire Healthy Communities is using the report to consider how to tackle social isolation in the country.

3. Post-COVID syndrome health care and support: As more people are being diagnosed with post-COVID syndrome (long COVID), Healthwatch Gloucestershire asked people how they have been affected by the condition and what care and support they have received and needed. In response to public feedback, Gloucestershire Health and Care NHS Foundation Trust has started to provide their post-COVID syndrome assessment questionnaire in a variety of formats, reviewed and updated their interventions so that people have more practical advice, and changed their referral process so that people can access the assessment and support service after a face-to-face GP appointment.

4. Young people’s health and care services: Healthwatch Gloucestershire asked young people about the changes they would like to see to improve the services they use. Gloucestershire’s Integrated Care System is using the insight and findings from the report to inform service improvement for young people.

5. Promoting the voices of the Deaf community in Gloucestershire to help tackle health inequalities: Healthwatch shone a spotlight on the challenges faced by the Deaf community and people who are hearing impaired when accessing health and care services. This report was shared with service providers to make sure people’s needs are being met, and the Care Quality Commission is using people’s feedback to inform their future strategy for tackling health inequalities.

6. People’s experiences of blood pressure monitoring at home: This Gloucestershire focused report was based on wider work with Healthwatch England to highlight the benefits and challenges of using technology to support healthcare. NHS Gloucestershire CCG have now commissioned Healthwatch Gloucestershire to carry out an in-depth project on digital inclusion.

Announcing the annual report, Nikki Richardson, Chair of the Healthwatch Gloucestershire Board, said: “As the health and care system in Gloucestershire puts into effect plans for recovery following the pandemic, Healthwatch Gloucestershire has been a key player in ensuring that local voices have been heard and responded to. This annual report shows some of the ways we have done this throughout the year to help create positive change in services. Going forward, we are committed to championing better care for everyone, including those who often go unheard. We will continue to work closely with the NHS, local councils, care providers and the voluntary sector, sharing people’s concerns and queries to help improve access to services and quality of care.”

Healthwatch Gloucestershire priorities for 2022-23

In 2022-23 Healthwatch Gloucestershire will be looking to understand the health and care experiences of people living with autism, refugees and asylum seekers, and young people with mental health issues. They will also work with One Gloucestershire NHS Integrated Care System (ICS) on a project looking at digital inclusion.

Read the full Healthwatch Gloucestershire Annual Report 2021-22 to find out more about their work during the past year, including findings and recommendations for changes to services.

The year in numbers

• In total, 2,896 people shared feedback or sought information about health and care services.
• 1,903 people shared their experiences of local health and social care services.
• 996 people asked for information, advice, and support on how to get the care they need.
• 35 volunteers supported Healthwatch Somerset last year, giving up 92 days of their time to make care better for their community.
• Healthwatch Somerset published five reports about the improvements people would like to see to health and social care services.

Healthwatch Somerset’s reports and how public feedback has made a difference

1. District Nursing Service: Healthwatch Somerset found that most people were very happy with the care they get at home, but they would like the District Nursing Service to offer weekend and evening visits and many people are cautious about digital consultations. Somerset NHS Foundation Trust is using this public feedback to develop their transformation plan for the District Nursing Service.

2. Young people’s health and care services: Young people told Healthwatch Somerset they want more joined up services and better communication. Somerset’s NHS Clinical Commissioning Group are using the insight from this report to inform delivery of the NHS Children and Young People’s Transformation Plan.

3. How are patients affected by waiting for surgery? Healthwatch Somerset’s report alerted the NHS that patients believed their condition deteriorated while waiting for surgery and they want more support and better communication while they wait. The NHS in Somerset is now piloting a scheme offering exercise to patients waiting for joint replacements to help maintain mobility; they now contact people on the waiting list to check on them; and the Trust is creating information materials to support patients on waiting lists.

4. Patient experiences of the NHS 111 service in Somerset and Devon: This report informed the service provider, the Care Quality Commission, the Clinical Commissioning Groups (CCG) and the NHS in Somerset and Devon, of common and continuing areas of concern. Public feedback influenced Devon CCG to recommission the NHS 111 service in their area.

5. Same day urgent care services in West Somerset: Somerset’s NHS Clinical Commissioning Group wanted to find out what local people know about these services and how they think they should be provided and promoted. The Healthwatch Somerset report has gone to Somerset NHS Fit for My Future Board to inform the ongoing review of how NHS urgent care is provided in Somerset.

Announcing the annual report, Judith Goodchild, Chair of the Healthwatch Somerset Board, said: “Despite another challenging year due to COVID, we have covered an extensive programme of work and made sure your views were heard by health and care decision makers to inform positive change in the services you use. Going forward, we are committed to championing better care for everyone, including those who often go unheard. We will continue to work closely with the NHS, local councils, care providers and the voluntary sector, sharing people’s concerns and queries to help improve access to services and quality of care.”

Healthwatch Somerset priorities for 2022-23

• Reducing the barriers people face when accessing services – particularly around access to face-to-face appointments and digital access.
• Championing the voices of those who often go unheard – including young people in need of mental health support.
• Influencing decision makers on a local level as services evolve – including working with Somerset’s new Integrated Care System (ICS) and looking at people’s experiences of being discharged from hospital to intermediate care or back to their own home.

Read the full Healthwatch Somerset Annual Report 2021-22 to find out more about their work during the past year, including findings and recommendations for changes to services.

High blood pressure (hypertension) if untreated, increases your risk of serious problems such as heart attack and stroke. Around a third of adults in the UK have high blood pressure, although many will not realise it. Low blood pressure (hypotension) can also be problematic and may need medical intervention. The only way to accurately find out if your blood pressure is too high or too low is to have your blood pressure checked.

Blood pressure monitors are one of the many fast-growing solutions that can help people monitor and improve their health in the comfort of their own homes.

NHS Digital asked Healthwatch England to help them understand peoples’ experiences of remote blood pressure monitoring and how GPs use their blood pressure readings, to evaluate their remote blood pressure monitoring pilot programme, BP@Home.

Healthwatch Gloucestershire worked with local Healthwatch in four other areas (Darlington, Hampshire, Hammersmith and Fulham, Oxfordshire and Buckinghamshire) to help people share their experiences. The 60 people from Gloucestershire who took part said similar things to those in other areas of the country, around 500 in total.

People told Healthwatch that there are many benefits to blood pressure monitoring at home, including peace of mind, feeling in control of their own health, and convenience. But there are questions about whether the real benefits of better health outcomes are being realised.

Healthwatch in Gloucestershire and other areas found there are gaps in GP processes that negatively impact patients’ experiences. This is demotivating for people and means opportunities to address blood pressure problems could be missed. They also found that access to and confidence in using digital technologies can be a barrier for some people.

Some of the things highlighted from people’s feedback

• People use blood pressure monitors at home for many reasons – not just when advised by medical professionals.
• The experiences of those prompted by their GP to use a monitor at home fall short in many ways.
• People were not given enough information about how to use their monitors.
• Many people are not submitting readings regularly.
• When people do submit readings, they often don’t hear back from their GP.
• People are willing to continue monitoring blood pressure remotely but have ideas on how the NHS can improve support.

Steps to improve support

Healthwatch have reviewed feedback from people in Gloucestershire and other areas and made a series of recommendations, including steps the NHS can take to improve support and outcomes for people who monitor their blood pressure at home. These include:

• Better information about high blood pressure, so people know why they should monitor their pressure, what ‘normal’ readings look like, how to reduce risks and when to act.
• Guidance and support around taking and submitting blood pressure readings.
• Better solutions for submitting readings easily and efficiently.
• Feedback on submitted readings and provision of ongoing support.
• Advice on what to do to improve blood pressure.
• Acknowledge concerns amongst patients and provide access to a GP if required.

Participants are mostly able, willing, and keen to use digital platforms to submit blood pressure readings. They will consider using other forms of remote monitoring if the right processes are in place, including providing information, guidance, feedback, and advice. The NHS can adapt the recommendations above to suit other types of remote medical technology.

Many participants want to take more responsibility for their health and wellbeing, but there needs to be a better partnership between GPs and patients for this to work. The NHS can achieve more by being a partner who helps promote people’s wellness, rather than only focussing on fixing issues once they reach a crisis point.

Read the Healthwatch Gloucestershire report, which includes case studies about local people’s experiences of blood pressure monitoring at home.

Read the full Healthwatch England report  which combines findings from five local Healthwatch.

• A&E staff treated them with care and kindness
• Staff were professional, efficient, and organised
• Waiting times were short
• Communication was good
• Information and aftercare met their needs.

However, there were also common themes in the negative feedback gathered:

• Long waiting times for a small number of patients
• Some unhelpful staff, particularly at reception
• Unclear information, navigation, and signposting
• Lack of comfortable facilities
• Lack of confidentiality and privacy for patients
• Poor communication and lack of further support for some people.

96 patients (38%) said there was nothing the hospital could have done differently to improve their experience, 85 people didn’t comment, and 75 people offered suggestions for improvement. Healthwatch Dorset analysed what people told them and recommended the following actions to help Dorset County Hospital improve patient experience in A&E.

• The ongoing refurbishment of A&E should meet the needs people have raised in this research, including a request for more comfort and privacy for patients.
• Patients and their carers should be given a leaflet and online information about support available after leaving A&E, including a contact for follow up questions and information about the Patient Advice and Liaison Service (PALS).
• The hospital should look at staff training and ways to improve staff morale, particularly for A&E reception staff, to make sure that patients are treated kindly and with respect, even when hospital staff are working in stressful circumstances.
• Signage and parking information should be improved.
• The A&E department should review the ways in which people are kept informed while they are waiting, including the use of volunteers to support patients who are anxious or distressed.
• The public should be made more aware of Weymouth Urgent Treatment Centre to help reduce the number of people needing to be redirected there from A&E.

Nicky Lucey, Chief Nursing Officer/Interim Deputy Chief Executive at Dorset County Hospital, thanked Healthwatch Dorset for the report saying:

“The experience of people that use our services is really important to us, particularly as they have accessed services when we have been under pressure through the pandemic. Working with Healthwatch Dorset helps us engage differently with the population to really hear their voice to influence our quality improvement. I am pleased the report echoed our clinicians voice on the need for the estate development, which is part of our future estates strategy for the Emergency Department.”

Read the full report which includes data and patients’ comments: Dorset County Hospital A&E: People’s experiences – What works well and what could be improved?

Healthwatch Wolverhampton’s role is to listen to people’s experiences of using health and social care services in the city, to understand the issues that really matter to local people and the challenges facing the NHS and other care providers. They use this insight to help health and social care services understand how to improve care for local people and reduce health inequalities. Healthwatch Wolverhampton can also help local people find reliable and trustworthy information and advice to help them get the care and support they need.

Healthwatch Wolverhampton is part of a network of over 150 local Healthwatch across the country. As an independent statutory body, Healthwatch has the power to make sure that NHS leaders and other decision makers listen to public feedback and use it to improve standards of care, locally and nationally.

Lynda Williams, CEO of Evolving Communities, said:

“We are extremely proud of the quality of the Healthwatch services that we run and we’re delighted that we will be working with the people of Wolverhampton. We believe that health and social care providers can best improve services and reduce health inequalities if they listen to people’s experiences, and we want everyone in Wolverhampton to be included in the conversation.

 

“In the coming months, we will build a strong Healthwatch Wolverhampton team of staff and volunteers and build on previous work carried out in the city. We will work with the public, voluntary and community groups, the City of Wolverhampton Council, and the local health and care sector, to make sure that Healthwatch Wolverhampton is an effective and representative champion for local people.”

Contact details for Healthwatch Wolverhampton have not changed, so if you’ve recently visited your GP, or local hospital, or used any health and care services in the city, get in touch with your feedback, good and bad, to help improve services for everyone. Visit healthwatchwolverhampton.co.uk, call 0800 470 1944 or 01902 240 230, or email info@healthwatchwolverhampton.co.uk.

Becky Wilkinson, the City of Wolverhampton Council’s Director of Adult Social Services, said:

“Healthwatch Wolverhampton has an important role to play in ensuring the city’s health and social care services are the best they can be and to reduce health inequalities. It enables people’s views and experiences to be heard and used to help improve existing services and shape future provision. It also works to ensure that action is taken to resolve concerns and problems in relation to services and prevent them from arising again.

 

“Patients and service users should feel they can meaningfully influence the development of their services, and we are looking forward to working closely with Evolving Communities to ensure this is the case.”

Last year, SMVP represented maternity service users and worked with maternity care providers and decision makers to design, develop, and improve maternity care at a local, regional, and national level. They have made sure that services understand people’s needs and use their expertise to develop innovative and effective solutions.

SMVP and its volunteers worked with NHS partners on a broad range of coproduction projects last year, including:

• Design and implementation of a new Somerset Maternal Mental Health Service (working with Somerset CCG and Maternal Mental Health Teams).
• Design and production of Somerset’s pregnancy and baby loss personalised care plan to improve the quality and consistency of bereavement care (working with Somerset NHS Hospital Trusts).
• Improving communications and support for Black, Asian and minority ethnic families, through production of an operational policy and the creation of leaflets that were translated into 20 different languages to be given to all Black, Asian and other ethnic minority women being looked after in Somerset (working with the Somerset Local Maternity and Neonatal System (LMNS)).
• Development of communications materials to support Somerset Public Health’s Healthy Pregnancy Project and guiding their work with service users (working with the LMNS Public Health Midwife).

In addition, the Chair of SMVP, Donna Butland, sat alongside maternity service professionals on over 50 strategic planning, decision-making and project groups, making sure the voices of maternity service users are heard and acted on at the highest level.

Announcing the annual report, Donna Butland, Chair of the Somerset Maternity Voices Partnership, said:

“I am immensely proud of what we have managed to achieve this year, despite the challenges of COVID. We have shown our understanding of the pressures that maternity care units have been working under, but we have continued to champion the voices of those using maternity services. We have made sure that your expertise and perspectives are heard, respected, and valued at the highest level by those making decisions, and that your input is sought at every stage to help drive change and improvement in Somerset’s maternity services. As we recover from the pandemic, it is more important than ever that we work together to learn from these challenging times.”

Becky Applewood, Deputy Director of Women’s and Children’s Health, Somerset Clinical Commissioning Group, commented:

“The last couple of years have been a challenging time for the NHS, including maternity services. Throughout all the pressure, the MVP have supported us while making sure that we never lose sight of what matters to Somerset families. Our aim is to ensure those who need our maternity services are kept safe, get the support they need, and have the best possible experience. Keeping those that need our services at the centre of all we do is essential and I truly believe that working alongside our MVP improves our services in every way. I would encourage every person in Somerset who is using or has recently used our maternity services to be part of the MVP, we need to hear about your experiences so that we can review and make relevant changes.”

Read the full Somerset Maternity Voices Annual Report 2020/21 to find out more about their work, to hear some of the real stories that have been shared to help improve maternity services learn and improve, and to find out what they will be focusing on in 2021/22, including the Ockenden Report.

Find out more and keep up to date with the work of the Somerset Maternity Voices Partnership by visiting: Somerset MVP and follow their social media.

Eighty-five responses were recorded and analysed by the Young Listeners, and key themes and ideas for change were identified. Their findings have been shared with Gloucestershire’s health and social care decision makers to help them understand what matters to young people and how services could better meet their needs.

Key themes

Young people feel they are not always taken seriously or listened to by their GP.

“I feel like I have to exaggerate my symptoms, especially with my mental health, and wish I didn’t have to do that to be taken seriously.”

Services are focused more on providing critical care than early intervention.

“There needs to be more preventative measures to stop mental health issues spiralling into early adulthood.”

Young people feel that most social care services are aimed at a ‘younger audience’ (children and young teens), and less at young people who are no longer in education.

“The older I get the harder (relationships) are to make.”

There are few services that help young people with the emotional and physical transition into adulthood.

“I would feel a little bit embarrassed to ask for help. It’s not spoken about a lot so I would feel like I’m the only one that has a problem in their relationship.”

Young people said their experience of moving from children’s services into adult services was not positive, including poor communication between services.

“[Needing to] restart every step every time I go to a new service is emotionally draining.”

COVID-19 has had a huge impact on young people’s lives, including maintaining and making new relationships and mental health.

“No break from COVID being the topic of conversation, worrying about lots of different things COVID related, and coping strategies weren’t always accessible.” “I felt very lonely.”

Most young people do not know what services they are entitled to or have access to.

Young people want to be involved in promoting and creating health and care services that are aimed at them.

Changes young people want to see

1. More support groups and hubs should be set up for young people who have left education.
2. Educational institutions and other youth focused organisations would benefit from having a directory of local services that are available for young people, and staff available to provide information, guidance, and support.
3. GP surgeries need to be more approachable for young people and have a better understanding of the pressures they face and the impact this has on their physical and mental health. It would be helpful to have an area for young adults, including resources and staff to engage and support them.
4. Services should be designed to provide young people with mental health support whenever they need it, not just when things become critical. Early intervention could reduce the stress on emergency services and help prevent young people needing mental health care in the future.
5. Young people should be involved in making decisions about the health and care services aimed at them. Their input could help make these services more welcoming and accessible.
6. Clearer lines of communication are needed between health and care services. Improving the referral process or having one GP assigned to a young person would help to create a better relationship and build trust between services and young people.

Healthwatch Gloucestershire Manager, Helen Webb, said:

“We believe that health and social care services can best improve if they listen to the experiences of those they care for. With the help of our fantastic Young Listeners we have been able to give young people in Gloucestershire the opportunity to share their stories and discuss how they feel about the services they use. We have given them a platform to share their ideas and influence changes that will improve young people’s health and care experiences in the future. Thanks to all the young people who took part and to our Young Listeners for delivering such a positive project in a year that has been so challenging due COVID-19. We will now work with health and social care services to make sure your feedback is heard and used to make care better for young people.”

Becky Parish, Associate Director, Engagement and Experience, NHS Gloucestershire Clinical Commissioning Group, said:

“Firstly congratulations to Healthwatch Gloucestershire Young Listeners (Abs, Robyn, Sascha and Todd) and Youth Engagement Officer (Jessica) for an excellent project and report. The new One Gloucestershire Integrated Care System (from 1 July 2022) is placing a huge emphasis on working with people and communities and hearing about areas and issues they want the ICS to consider as it develops a new strategy for next year. This report comes at an excellent time to influence this from a young persons’ perspective. It is clear from the report recommendations that young people want services and support organised in ways that are more accessible and relevant to them.”

Read the report: How would young people in Gloucestershire improve the health and care services they use?

It is estimated that around 1.3 million people in the UK had post-COVID syndrome in January 2022 (source: ONS long COVID data). Symptoms, which can last for weeks or months, include extreme tiredness (fatigue), shortness of breath, chest pain or tightness, and problems with memory and concentration (‘brain fog’). While the severity of people’s symptoms varies, for many the condition is debilitating and life changing.

In December 2021, Healthwatch Gloucestershire carried out a snapshot research project, asking people to share their experiences of the condition and the care they have received or would like to have received from local health and social care services.

The Gloucestershire Health and Care NHS Foundation Trust supported the project by promoting the research to patients who are using the county’s Post-COVID Syndrome Assessment Service.

56 people responded via an online survey and phone interviews, providing valuable insight which local services can learn from. Healthwatch Gloucestershire has analysed this feedback and identified common themes and recommendations for how services can improve care for people with post-COVID syndrome.

Key themes

• People don’t always know which services are available to help them.
• Most people were helped by their GP and a smaller proportion were helped in hospitals.
• People are waiting a long time to hear from Gloucestershire’s Post-COVID Syndrome Assessment Service after they have been referred for support.
• Patients felt left alone to seek their own treatment options.
• Being proactive to find support can be challenging due to brain fog and fatigue.
• People were not often given the opportunity to have face-to-face conversations with clinicians.
• Long waiting times and disjointed services make mental and physical wellbeing more difficult to treat.

The report includes stories from three Gloucestershire residents, who recall their life-changing experiences of post-COVID syndrome. Barbara ended up in A&E being treated for a serious heart condition after waiting 18 months to be referred for her symptoms. Clara, a nurse, has struggled to get the care she needs for her severe and ongoing neurological symptoms, and Cameron continues to receive support for the many physical and emotional symptoms he experiences after being hospitalised with COVID.

Recommendations for improvement

Based on feedback received from patients, Healthwatch Gloucestershire is recommending that those responsible for health and social care in Gloucestershire take the following actions to improve support for people with post-COVID syndrome.

• Create a public awareness campaign about the NHS support that is available.
• Make sure GP practices are aware of the different services and support groups available, with information ready to share when people first present with symptoms.
• Communicate openly and clearly with people about the waiting time between referral and consultation and wellbeing support.
• Share practical and helpful tips with patients, such as breathing exercises, as part of a more active approach to care.
• Invest time and resources in face-to-face support so that people feel less isolated.
• Continue to fund advice and information events as these are an effective way to provide support for patients.

Helen Webb, Healthwatch Gloucestershire Manager, said: “Post-COVID syndrome is a newly defined condition, so clinicians and services are still learning and adapting how they treat and care for people. That’s why it’s so important to ask patients about their experiences, to understand what can be done differently to provide better care. Thanks to everyone who talked to us so openly about the challenges they are facing and the support that is helping; your feedback will make a difference.”

Gloucestershire Health and Care NHS Foundation Trust has welcomed the report, and they are already using the patient feedback to help review and develop services for people living with post-COVID syndrome.