KIDNEY RESEARCH UK has launched a new dedicated online forum specially created to give people living with kidney disease and the families and carers who support them a safe and supportive space to talk, learn from each other and share experiences. 

Shaped with help from Welsh patients, the forum offers a dedicated community space for the more than 377,000 people in Wales thought to be living with kidney disease. 

Free to use, the new forum, called Kidney Community, creates a single, safe space where people can connect with others who understand their experiences, ask questions, share practical advice and find support, no matter what stage of the kidney disease journey they are at. 

Kidney Community is open to kidney patients at all stages of the disease, people with a higher risk of developing it, and anyone affected by a diagnosis in their family or friendship groups. 

The forum will be continually supported by Kidney Research UK’s team, helping to ensure discussions are informed, respectful and grounded in trusted information. It has been co-developed with kidney patients and carers to ensure it reflects real needs, concerns and priorities. 

Darren Daniel from Ammanford in southwest Wales helped with the forum’s development. Diagnosed with kidney disease in 2017, Darren has used social media, including TikTok, to raise awareness of kidney health and the realities of living with long-term illness. His experience of connecting with others helped inform the development of the forum. 

Darren said: “When I started sharing my kidney journey online, I saw just how many people were desperate for somewhere to talk honestly about what they were going through. Helping shape this forum felt like a natural next step – making sure it’s real, accessible and driven by the questions people actually ask, not medical jargon.” 

“This forum takes that sense of community and gives it a safe home, backed by Kidney Research UK. It means people don’t have to scroll endlessly or rely on misinformation. Whether you’re newly diagnosed or years into treatment, there’s power in knowing others understand your day-to-day reality, and that support is only a conversation away.” 

Sandra Currie, chief executive of Kidney Research UK, said: “Many people affected by kidney disease tell us they feel unsure where to turn for support. This forum brings patients and carers together in one place, so they can feel heard as part of a community, with access to information and shared experience at every stage of kidney disease. We are providing a safe, welcoming space where every question and every story matters.” 

The launch builds on Kidney Research UK’s long-standing commitment to ensuring the voices of patients and families help shape research, services and support. Existing supporters, volunteers and members of the charity’s Kidney Voices for Research network were among the first invited to join. 

The forum is now live and free to access at kidneycommunity.kidneyresearchuk.org  

A TUTOR who struggled with depression and anxiety found “life-changing” online support through a free NHS Wales service.

Former maths teacher Iain Messenger had experienced anxiety for decades but said looming retirement and the collapse of his marriage were the final straw.

He called the NHS 111 press 2 mental health service after experiencing crippling panic attacks, low self-esteem and ‘dark thoughts’.

He was signposted to SilverCloud Wales, an online platform offering guided self-help programmes for mental health and wellbeing.

Speaking out to coincide with Time to Talk Day – the nation’s biggest mental health conversation – 58-year-old Iain said: “The sense of hopelessness dissipated almost immediately.

“I realised I wasn’t the only one – other people were dealing with the exact same problems and feelings. I no longer felt alone.”

The former teacher, who lives near Welshpool, decided in 2024 to quit the classroom and focus on private tutoring.

But handing in his notice coincided with a marital breakdown, and he began each day of his final months in work battling panic attacks.

“I was struggling with my close relationships, and basic decision-making always turned into a drama,” Iain explained.

“I felt useless, wandering about not able to focus on anything. I couldn’t even read a book or watch the TV.

“I had some pretty dark thoughts – that I was a disaster, and no use to my family. I was in a real mess.”

Iain said seeking help through 111 press 2 in June last year was a ‘huge’ and ‘humbling’ step.

“It’s a bloke thing – you put on a front and pretend you’re OK,” he explained. “And I was typical in that regard, I wouldn’t really speak to anybody.

“You feel like the only person in the world who can’t do life, but then when you phone 111 press 2 and they go through the list of questions, it’s instantly relatable. You realise you’re not the first person to be there.”

Iain was referred for counselling but was advised to try SilverCloud while he waited for an appointment.

The platform features online courses based on cognitive behavioural therapy for issues including depression, anxiety, poor sleep and stress.

Access is free to anyone in Wales aged 16 or over, without seeing a GP.

“I was sceptical at first,” Iain admitted. “I just couldn’t see how an online platform was going to work, I thought I needed someone to press the right buttons and fix me.

“But going through the programme, there were scenarios that described exactly how I was feeling. I identified with so much of what was being said.

“And I was now actively doing something to get well. Just having a plan in place meant I went almost immediately from hopeless to hopeful.”

SilverCloud Wales is managed by NHS Wales’ Online CBT Service, based at Powys Teaching Health Board.

Over 41,000 people have accessed the Wales-wide service since it piloted in Powys in 2018.

As well as programmes for adults, the platform has courses for students and young people, and for parents supporting children and teens with anxiety.

SilverCloud’s three most popular programmes – addressing anxiety and depression – are also available in Welsh.

Online CBT Service project manager Fionnuala Clayton said: “Time to Talk Day reminds us how important it is to speak up when you’re struggling – it’s often the first step to feeling better.

“But we know that isn’t always easy, and that’s where SilverCloud can help. It offers flexible, confidential support you can access straight away, without waiting for a GP appointment. We’re delighted to see the difference it’s made to Iain’s life.”

Iain added: “I’m still using the lessons I picked up through SilverCloud, and they’re becoming more embedded in my thinking.

“I’m grateful – on a daily basis – for the things I learned. It’s been lifechanging.”

Sign up to SilverCloud at: nhswales.silvercloudhealth.com/signup

Cover image:

Former maths teacher: Iain Messenger 

Welsh campaigners say new law could free dozens from inappropriate units and save up to £14m a year

THE NATIONAL AUTISTIC SOCIETY CYMRU is urging the next Welsh Government to introduce an Autism and Learning Disability Bill to prevent autistic people being unnecessarily detained in mental health hospitals, warning the current system is both harmful and costly.

Around 140 autistic people and people with a learning disability from Wales are currently being held in mental health units, despite campaigners saying such settings are unsuitable for most.

Families and advocates report repeated concerns including abuse, overmedication, excessive restraint and solitary confinement.

The charity says many people remain detained for years rather than months, with the average stay approaching five years. Placements are often far from home, leaving relatives facing long journeys to visit loved ones and making it harder to maintain family support.

Campaigners argue that failures in existing laws and weak duties on public bodies mean families struggle to challenge decisions or secure appropriate community care.

Community care cheaper

The organisation says keeping people in hospital is also significantly more expensive than supporting them locally.

Community support can cost from around £13,000 a year for those living with friends or family, rising to about £80,000 for supported accommodation. By contrast, the average inpatient placement costs about £214,000 per person each year.

Even the most intensive community packages are estimated to be between £130,000 and £200,000 cheaper annually than hospital care.

If the number of people in hospital units were halved, the charity says Wales could save between £9 million and £14 million a year.

However, it argues those savings will not be realised without new legislation to reform how services are planned and delivered.

‘Stolen lives’

Through its Stolen Lives campaign, families have shared accounts of relatives who they believe could have remained in the community with the right support, but were instead sectioned when local services broke down.

The charity says hospital should be a last resort, not the default when care systems fail.

It is calling for a dedicated Autism and Learning Disability Act that would:

– strengthen legal rights to support
– improve coordination between services
– increase accountability when systems fail

James Radcliffe, External Affairs Manager for the charity in Wales, said: “The next Welsh government has the opportunity to end the unnecessary detention of autistic people. Currently existing laws are failing to protect autistic people.

“Families are unable to challenge services to allow them to bring their loved ones home.

“An Autism and Learning Disability Bill could end this injustice and end this human rights failure. It would strengthen the protections and rights for autistic people and people with a learning disability and it would also save the taxpayer millions.”