How a daughter’s grief led to one of the UK’s leading mesothelioma support charities.

In this moving episode of Breathe Strong, host Rachel Thomas sits down with Lynne Squibb, CEO of HASAG, a charity dedicated to supporting patients and families affected by mesothelioma.

Lynne shares the personal story behind the founding of HASAG, following her father’s mesothelioma diagnosis and the family’s struggle to access care, support, and benefits.

From humble beginnings as a coffee morning, HASAG has grown into a multi-faceted charity offering home visits, benefits advice, counselling, legal support, and funding for research and specialist nurses.

This episode is a testament to what compassionate, patient-led support can achieve, and why it’s so vital.

Top 3 Takeaways:

1. Support must go beyond medical care: Patients need holistic, accessible help—from benefits advice and home visits to emotional support and legal guidance. HASAG’s work fills critical gaps left by the healthcare system.
2. Lived experience drives impact: Every member of the HASAG team has been personally affected by mesothelioma, bringing empathy and real-world understanding to their support.
3. Collaborative care changes lives: By working closely with NHS nurses, solicitors, and other professionals, HASAG helps patients access essential resources like mobility aids, home adaptations, and even treatments not funded by the NHS.

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The doctor said to him, you really need to go to the hospital because I think you've got fluid on your lung. And he didn't go.

He went home, had his tea, thought about it, and then we convinced him to go to A and E the following day where they drained off five litres of fluid from his lung.

Hello and welcome to Breathe Strong. I'm your host, Rachel, and I'm delighted that Lynn Squibb is joining me today in the studio.

Lynn is the CEO of Hassag Asbestos Disease Support, a charity that provides support and advice to patients and their families who've been diagnosed with mesothelioma. So, hello, Wutlin, and welcome and thank you for coming in. Maybe you'd like to just start by telling us how Hassag came about.

Thanks for having me. Hassag was set up almost 20 years ago now. We celebrate our 20th anniversary next year and it was set up after my dad was diagnosed with mesothelioma.

He went home, had his tea, thought about it, and then we convinced him to go to AE the following day, where they drained off five litres of fluid from his lung. The procedure went wrong. He was really quite poorly.

And at that point the consultant at the hospital said, I really think there's something sinister, and asked him if he'd ever worked with asbestos. So my dad had. He'd worked with asbestos for many, many years as a carpenter working for British Rail.

And 10 days later we went back to see the consultant and the consultant said, I think you've got something called mesothelioma.

And for a few seconds I felt relieved that he'd been diagnosed with mesothelioma, because my dad had talked many, many times about his other co workers that had developed asbestosis. And he'd often say to me, bob up the road's been diagnosed with asbestosis and they can't treat him and he hasn't got very long to live.

And I'd never put the two together. I'd never realized that he was actually talking about mesothelioma.

It was a word that I'd never heard of and came as A massive shock and my relief was short lived. And that's when we got onto this journey. During that journey, he wasn't offered any palliative care, he wasn't referred to hospice.

They said that he couldn't have any treatment because he lived in the wrong postcode.

His GP had never treated a mesothelioma patient, despite living in an area where there was an awful lot of mesothelioma diagnoses, not from people that worked at British Rail, but dockyard workers, people that worked at Pirelli, Portsmouth Docks also. There didn't seem to be any awareness, there didn't seem to be any support, any advice anywhere that we could go to as a family.

I couldn't even get him a perching stall. I couldn't get attendance allowance for him because the DWP said he's not poorly enough. So we struggled as a family, felt completely isol.

And we went on a journey after he passed away looking into, what can we do? How can we support people, how can we prevent people from feeling the level of isolation that we did during our journey?

Wow.

Yeah, sure. So at the coffee mornings, at the original coffee mornings, patients would say, how can I get this? Where do I go for that? Am I entitled to this?

So we thought, we can't just have these coffee mornings just to meet people.

So a decision was made to initially train as benefits advisors and that allowed allowed us to offer home visits to patients where we can complete forms for patients to receive entitlements from the government. And that's holistically, so we look at the family, not just the patient as well.

So we apply for industrial injuries payments, lump sum payments, attendance allowance, pip, universal credit, Employment and support allowance, carers allowance, blue badges, so the whole raft of entitlements. And we then said to people, what should we be doing as a support group? What would you like us to do?

So we get a lot of feedback from patients after we've seen them, and that's allowed the charity to develop and blossom.

So we have coffee mornings in eight or nine different locations, as well as an online support group where we always have solicitors present and healthcare professionals to support patients.

We cover the whole of the south, which includes the London boroughs, home counties, all the way up to North Essex, right across to Oxfordshire and then down to the West Country. Not going into the west country, but Somerset and Dorset as well. So we cover a huge area.

Everybody in the team has been touched by mesothelioma, so they would have had a loved one that developed and lost somebody to mesothelioma. So we've all had that lived experience within the team as well. We also offer counseling, we offer a buddy service, we also offer will writing.

So the service continues to evolve and develop, all from feedback, because that's so important. It's no good as a charity to say, aren't we good? Aren't we doing amazing work?

We need to find out if there's gaps in the support that we can offer patients. And another really important aspect of the charity is research.

So we've donated over £1.3 million in the last 19 years, and that's been broken down into research, funding nurses to go to educational events and funding mesothelioma UK nurses.

So that's been really important to us, as well as having our own community mesothelioma nurse specialists, because we see that there is, again, gaps in the service to support patients at home after a mesothelioma diagnosis.

Wow. Brilliant.

So I hope that gives you just a small flavour of the amazing support that Hassag offers to patients and their families and that we cover 90 hospitals across the whole of the South.

And I think one of the things that I feel is really good about hassag is that they see patients at home and that the legal panel that they have made up of seven law firms, I believe they're all vetted by Hassag and clients give feedback on the service they receive. So you know that those law firms are reputable law firms and trustworthy. So it sounds amazing, Lyn, what you've done.

And, you know, I think the recommendation is that if you're diagnosed with a mesothelioma diagnosis, to get in touch with hasag.

Yeah, it's important to us. The home visits are crucial. It's a privilege to go in and see patients after a diagnosis.

We're going in to see people in their homes and we're welcomed all the time. They are at their most vulnerable moment in their life.

They've been given this diagnosis where they know that they could have some possible treatment but there isn't a cure.

They've been given this devastated, devastating news, they've been overloaded with information and then one of the team rock up and try and fathom everything that they've been told with them and they allow us to come in and help them. And what I find really important as well is seeing a patient at home allows us to give feedback to nurses as well in the nhs.

Because my personal experience was that my dad would put on his best shirt and tie and go to the hospital and convince the consultant that everything was absolutely fine, even when it wasn't, even when he was really suffering, he developed some symptoms but didn't want to share that.

And sometimes at home, and you'll know this because you visit patients at home as well, that you see things differently in a patient's home, they open up more, you're able to have a conversation, you're not constraint by time at all and it allows you to unpick everything and see what we need to support them with at that time, not just with the benefits advice. That's all well and good, but no amount of money is going to give somebody their health back.

But what we can do is identify if there's an issue, identify if they're struggling with pain management or an uncontrollable cough, and we can then liaise with the nursing team or you can yourself just to help them with some of those symptoms. And that can be life changing for them to be able to manage the condition as well.

And also with the solicitors that we work really closely with, they're able to look at a compensation claim for them, but not just the compensation.

They're able to get funding for AIDS and equipment, maybe a stairlift to enable those patients to stay at home, and also treatment that's not available to them on the nhs, they can get that funded for them. And it's all of these things, us all working together.

And I hate to say the phrase of wrapping our arms around people after diagnosis, but that's what it feels like to us. And the patient and their families know that we're just a phone call away. We can go back at any time.

Even if they think there's a really silly question, we can answer that for them and if we don't know the answer, we can go and find out and give them good, accurate information. So that they're not floundering, trying to find information going on.

Mr. Google, when they're going to get information that they might not want to see or is not correct, we can find that information out for them.

Thank you. Yes.

And as you say, I think one of the really good things and positive things about Hassag is the special collaborative relationships they have with the lung cancer nurses in the local hospitals. So it's amazing. And thank you very much. And thank you for coming in and telling us all about the wonderful charity. Thank you. Thank you, thank you.