August 2024 Edition

Welcome to the first edition of IMPACT.

As your voice in health and social care, we know how important it is that we tell you what is happening with what you’ve told us. In July we’ll be doing just that, sharing the impact of the work we’re doing to hear your voices, represent them to decision makers and advocate for you and your families.

We’ll be highlighting the impact of our work across Llais, through the “Llais local” approach taken by our regional Llais teams, the work we're doing to really understand what's happening on an all-Wales basis, and the initiatives our teams are launching to look in more depth at emerging issues happening locally. I’ll also be telling you more about what I’ve been doing in my role as Chief Executive and sharing information about the meetings and groups we're regularly part of in Llais to drive improvements. Keep in touch and keep sharing your stories with us.

Best wishes,
Alyson Thomas
Chief Executive - Llais

Our impact: April – June 2024

How we work

In Llais we have three core functions as your independent voice in health and social care:

• To engage with you about your health and social care services
• To represent your views to health boards and local authorities based on the insights we develop from what you have told us. They have a legal duty to respond to tell us what they are doing with your feedback.
• To provide independent complaints advocacy for those needing support with the health and social care complaints system.

We also represent your views on boards and committees across health and social care, and work alongside other organisations where possible, like the Bevan Commission, to share resources and ideas.

The Llais local approach involves intense periods of engagement in smaller areas in Wales over a fixed period. You might see your Llais team in a local community group, the train station, the local supermarket or post office. We aim to be where you are, to hear what matters most to you. Look out for your local Llais team in your communities. Talk to us.

Together we can make a difference.

Impact #1 Dementia Project – A joined up approach to services

We spoke to over 200 people about the dementia care they receive from health and social care services in Neath Port Talbot and Swansea.

We made a representation to Neath Port Talbot and Swansea Local Authorities as well as Swansea Bay Health Board and the Regional Partnership Board to: work together to create or further develop jointly funded services that provide advice and support for people living with dementia and their families.

Take a look at Frank and Anne's Dementia Journey Story

We heard that the West Glamorgan Regional Partnership Board is putting together a dementia strategy in line with the All-Wales Dementia Care Pathway Standards. As part of this work, they will be looking at which services currently support those living with dementia in the area to better direct people and work out any gaps in services.

They shared their commitment to jointly providing the right advice at the right time for people living with dementia and their carers. They told us a Dementia Support Service had been set up via the West Glamorgan Regional Partnership with the help of five key organisations across Swansea and Neath and Port Talbot. The service supports people living with dementia along with their family, friends, and carers through providing information and advice around getting help at home, housing adaptations and repairs, respite, support and guidance. We were told that this work would continue to be developed further.

As well as sitting on the Regional Partnership Board, we now also sit on their Dementia and Learning Disability Programme Board bringing the voice of people to the table whilst services are being planned and developed. Thank you to all those who spoke to us about their experiences of living with dementia. We will keep you updated.

Impact #2 Review into Maternity Services at Singleton Hospital

Llais has been listening to women, birthing people and families that received care from Swansea Bay Health Board’s maternity services. What people told us was shared with the Independent Review of Maternity Services, and we asked them to show us how these views shaped their work.

Whilst this work is continuing, here are examples of what we have achieved:

• An agreement that an advisory group including people with lived experience, representatives from Maternity Voices Partnership, Llais and other third sector groups will be formed to advise the Panel on the approach to their work.
• Bereavement, mental health and wellbeing support services are to be made available for those who might need them.
• Information about the review will be made more visible on the Health Board website and following that a separate website will be launched for the review itself.
• We are working closely with families and the Health Board to move the review process forward so services can improve for people.

3,200 babies are born each year in the Swansea Bay University Health Board area. We know there may be a lot of you with stories to share.

If you want to have your say on your experiences of Swansea Bay maternity services, you can contact us at our Neath Port Talbot and Swansea office via email: maternityexperience@llaiscymru.org or by calling 01639 683490.

Impact #3 Advocacy: Waiting Times for Orthopaedic Surgery

We spoke with an 84-year-old man who had been waiting for orthopaedic surgery since early 2019. During that time his ability to get about deteriorated, with even one step leaving him in a lot of pain. He described his quality of life as non-existent. The pain was so bad that he hadn’t had a good night's sleep in over four years.

His question to Llais was “have I been condemned to live the last years of my life in agony, with no chance of surgery – am I going to die waiting for surgery?”

He had suffered from cancer during this time and was treated swiftly and successfully. However, as the cancer treatment lasted longer than 21 days the guidelines suggested he be removed from any waiting list and start again when doctors agreed he was fit. This would have meant him spending years longer awaiting orthopaedic surgery.

We wrote to the Health Board asking them to put him back on the list, in the place he should have been. The Health Board agreed, and the patient has now been offered imminent surgery.

He is overjoyed and looks forward to enjoying the future pain free.

Other ways we've made an impact this month

Powys voices – Themes from the Roma, Gypsy and Traveller community

In Llais, as your voice in health and social care, we want to hear more from communities whose voices are often underrepresented.

Our Powys team visited the local Traveller site in April as part of their Llais local engagement in Brecon to hear about their health and social care experiences.

What we heard:

• It is hard to register for a dentist nearby.
• It is hard to get through to the GP.
• Getting to services without access to a car is tough.
• Hospital appointments across the border change a lot and it’s hard work trying to get in touch to arrange.
• There are long waits for diagnostic procedures.
• There are long waits for cataract surgery.

What we did:

After our Powys team looked at the feedback from across their Brecon Llais local, they made representations to Powys Teaching Health Board, including:

• Discussing feedback with Brecon Medical Practice about difficulty contacting the Practice.
• Linking in with the Health Board and the practice to arrange a follow-up visit.
• The Health Board sharing your feedback about hospital appointments with relevant health boards and trusts in England.
• The Health Board using your feedback on appointments in their work on “Waiting Well” for people waiting for treatment.

The Powys team will be tracking the progress of these representations through the rest of the year and reporting back on what the Health Board have done to put your views into action.

Thank you to those who shared your views. Keep talking to us so we can make a difference.

Amplifying the voices of unpaid carers

Llais continues to work with unpaid carers as part of our strategic priority of working together better.

Two of our regional teams, Powys and West Wales, have worked with carers as their regional priorities and in July Llais took part in the Carer Aware Conference 2024.

Carer Aware is a joint project, funded by Welsh Government, between Carers Trust Wales and Carers Wales to work together with unpaid carers, social care and health professionals to give unpaid carers a real say in decisions and services that affect both the people they care for and themselves.

The conference brought together 4 years of the Carer Aware project, looking at lessons learned and good practice from Wales and beyond into one place.

In line with our goal to drive a national conversation about future health and social care services, Llais were part of an expert panel discussing ‘The future for the health & social care workforce and unpaid carers’ along with Health Education in Wales, Social Care Wales, Office of Chief Nursing Officer and unpaid carers.

You can read about the impact of the Carer Aware project here

Unpaid Carers Assembly

Building on our relationship with Voices Adfocad, developed by, for and with unpaid carers in Wales, Llais will be supporting the Unpaid Carers Assembly in Cardiff in October along with Cardiff and Vale Regional Partnership Board and Cardiff Third Sector Council.

The event focuses on encouraging people to work together to create services and new ways of doing things, both locally and across the country. This effort is in line with Llais’ our goal to ‘push for services that meet everyone’s needs.’

For more information and to register to attend: https://www.voices.wales/cardiff-and-vale-unpaid-carers-assembly/

Shaping the way things are done through what you tell us

From April to June, your views and experiences helped shape these national consultations through our representation:

• Proposed changes to the Putting Things Right process
• Professional Standards Authority’s good practice guidance documents for regulators: Guidance on the use of Accepted Outcomes in Fitness to Practice and guidance on Rulemaking
• Draft Suicide and Self-harm Prevention Strategy 2024-2034
• Neurodivergence Code of Practice development
• Draft Mental Health and Wellbeing Strategy 2024-2034
• Draft Health and Social Care (Wales) Bill
• Health Education improvement Wales (HEIW) Education and Training Plan (ETP) for 2025/26
• Draft Partnership Arrangements (Miscellaneous Amendments etc.) (Wales) Regulations 2024.

Annual Mammograms

Women who had been treated for breast cancer told us they were waiting a long time for their annual breast screening tests. We asked Swansea Bay Health Board what the waiting time was and how it would be addressed.

The Health Board told us that there was a four-month backlog for imaging and said that it would put on extra clinics to reduce this. The Health Board said that it was meeting weekly to keep an eye on the situation and would continue doing so until waiting time targets are met.

Llais signs the Digital Inclusion Charter

What is digital inclusion?

Digital inclusion is the connection and inclusion of the person into their community through having the skills, opportunity and access needed to make use of technology in their daily lives.

What are Llais doing about it?

We want you to have good experiences of using technology to access health and care, while respecting that some people make an active choice not to do so.

To build on the work of our Strategic Plan in helping you to use technologies in ways that work for you, we recently signed the Digital Inclusion Charter, joining the Digital Inclusion Alliance Wales. The alliance brings together organisations across Wales to work together in making Wales a more digitally inclusive nation.

In July, Alyson Thomas, our Chief Executive and Prof. Medwin Hughes, our Board Chair were joined by Sara Woollatt from Digital Communities Wales at Cwmpas to sign the charter.

Why does it matter?

We know that those at risk of digital exclusion tend to be:

• older adults
• disabled people and those with long term health conditions
• those with lower educational achievements
• on lower incomes
• living in rural areas
• Welsh speaking or those whose first language is not English
• socially isolated
• homeless

These are also the people most likely to be affected by challenges to their health and care.

The National Survey for Wales 2022/23 tells us that 7% of adults in Wales – roughly 170,000 people - are not online. With the growth in programmes like the NHS App, and the use of online services to support people to access health and care, it is important that we make sure services meet the needs of everyone in Wales, and that those needing support to do so know where they can get the help they need.

Keep an eye out next month where we’ll be hearing more from the team at Digital Communities Wales about the importance of digital inclusion and where working together is helping everyone who needs to make use of technology in their health and care services.

Roundtable on GP access with the Older People’s Commissioner

In July, we attended a roundtable event chaired by the Older People’s Commissioner, Heléna Herklots CBE to discuss the Commissioner’s recommendations. These included:

• Improving older people’s access to services by looking at the barriers and improving communication.
• Supporting older people to attend the GP and follow clinical advice
• Making sure older people have the digital skills they need to access GP practices.
• Building trust
• We recognise that public sector pressures affect services, and how consistent these are for older people.

We agreed to work together with other key organisations there to:

• Improve continuity of care in GP services for older patients.
• Improve communication with older people to help them feel valued by their practice. This includes encouraging them to access healthcare, helping them to understand changes to services and the roles of professionals they can build trusting relationships with.
• Work on preventative care with GPs and communities.
• Make sure existing programmes have been designed with equity, diversity and inclusion in mind
• Share good practice from reports.
• Strengthen the relationships between health and social care so people have the right support after receiving medical advice.
• Raise difficulties with medical transport with the Cabinet Secretaries for Health and Transport.
• Use our own networks to make older people aware of the Commissioner’s information guide on accessing GP practices.

We’ll be joining the Commissioner’s team for a follow-up event in September to look at progress and we’ll let you know the next steps.

Do you, or an older person you support have experience of accessing health and social care that you want to share with us? Take a moment to have your say here

Llais meeting of 120 brings reassurance to patients of the Hanmer Surgery

In June, Llais helped with a public meeting at the Hanmer Arms for the patient action group to share their views about a new health centre. Dr Kieran Redman from the Hanmer Surgery has been leading a campaign for a new health centre in the area that he argues will meet the needs of the patients.

The project had reached a standstill over disagreement about the size of the development with the Health Board claiming it was too large for the patient list.

Simon Jones, associate director for Primary Care (East) for Betsi Cadwaladr University Health Board, attended the meeting alongside 120 people and reassured the group that the Health Board are committed to developing plans to meet the needs of the local population.

Llais continue to work closely with the practice and Health Board to make sure the voices of the public are heard. We'll keep you updated.

Pride Cymru

In Cardiff, we engaged with 2,000 people over the weekend through open and private conversations. People also completed feedback postcards about health and social care services. There were some key themes from these conversations:

1. Fertility: Limited access to IVF for same-sex couples.
2. Mental Health: Insufficient services for young people.
3. Women's Health: Long waiting times for diagnoses of conditions like Polycystic Ovary Syndrome, menopause and endometriosis.

Our postcard comments showed a call for:

• Investment in health and social care
• Shorter waiting times
• Better access to dentists
• Improved gender identity services
• Quicker ambulance response
• Support for neurodiverse individuals.

We’ll let you know the progress of representations we made from the event in future editions.

West Wales advocacy fight for fair dental care

One of our advocates in West Wales supported a client who was unhappy with his dental care. After being signposted to the dentist by NHS Wales 111, he had a tooth removed and a false plate fitted. It was poorly fitted and aligned, leaving him with crooked teeth.

The dentist offered only a partial refund. With the support of Llais complaints advocacy, he received an apology from the dentist, a full explanation of his care and a refund of £203.00 for his NHS treatment.

Keep looking out in future editions for our recent research on dentistry and how this experience fits with the bigger picture.

Do you need support in raising a concern about your health or social care services? To speak to our team of trained and professional complaints advocates, contact your local Llais office here.

Gwent: The voices of young people

Later this year, we’ll be looking to develop our work with children and young people. Our Gwent team got a head start on this recently, engaging with 138 young people across different education settings.

Their voices will be feeding into the Gwent team’s planned transition from child to adult survey, designed to stop young people falling through the gaps between services. We’ll keep you updated on this piece of work in future editions.

Thought about Volunteering?

Our volunteers make a big contribution to our work in hearing the voices of the people of Wales.

To find out more about volunteering with Llais, visit our website, or call us on 02920 235 558.

Please follow us to spread the word to your friends and family, so we can hear all voices in Wales.