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GP: 'The whole NHS now is a big bin-fire'

How the current health care crisis is affecting disabled people.

Anna Morell visits Nikki Fox to discuss her bad experiences in A&E, which have been magnified by being disabled. While wheelchair-using GP, Hannah Barham-Brown, gives a useful overview of how over-crowding and a lack of staffing affects the health care of people with different impairments.

91Èȱ¬ News Health editor Hugh Pym is in the studio to explain the latest NHS England figures.

Ron is the new disabled contestant on this year's Love Island, according to the press. But is he actually disabled, wonders Emma Tracey.

Plus Lauren Mahon from You Me and the Big C chats about cancer and bringing the award-winning podcast to an end.

Produced by: Amy Elizabeth, Keiligh Baker and Emma Tracey
Recording / mixing: Dave O'Neill 
Editors: Damon Rose, Sam Bonham.

Release date:

Available now

37 minutes

Transcript

NIKKI- Could you just unzip that, my love?

PAUL- Unzip it?

NIKKI- Just down the side there. Oh my god, this is going to be heaven, Paul. Take it off. It’s going to sound perverse. Ah! There’s a little clip at the side, Paul, you push that down. Oh my god, that’s amazing. Oh my god, I love you.Ìý

EMMA- Nikki Fox, what is going on in there?

NIKKI- And they are clean socks and clean feet. I’m going through a very pleasant experience at the moment, Emma.  

EMMA- Really?

NIKKI- Thank you Paul. Yeah.

EMMA- Paul? What services is Paul providing for you? 

NIKKI- He’s giving me more pleasure than I’ve had in a very long time, because he’s taken my splint off.

EMMA- Your splint? What kind of a splint and what’s it for?

NIKKI- It’s very boring. I think I might have told you before, Ems, you know for me to do a little bit of walking, not much, but I have to wear two ankle splints, otherwise I basically stand up and collapse in a heap because my ankles have got no structure. So, I wear these two splints and some very, very tight boots. But I drive, as you know, and I’ve been driving a lot this week.Ìý

EMMA- And you need a different splint for driving? 

NIKKI- Yeah. I drive an automatic, but my daytime splints are too stiff for me to flex my foot enough to brake and accelerate, so I have to wear an old-school splint, which is something similar to the one that Andy Murray wore when he was playing tennis and he had his ankle problems. And I find if it’s on for over three hours it gets very, very painful. It’s like something is crushing my bones. And I get ulcers quite bad because it breaks the skin. And you have to be a little bit careful. So, yeah, I got it taken off by Paul. It’s a fiddly looking thing to be honest, Em.

EMMA- I’m going to have to come and feel your splint someday, sorry, it’s going to have to happen.Ìý

NIKKI- Oh you can feel my splint any time, baby.

MUSIC- Theme tune.Ìý

NIKKI- It’s Access All. Thank so much for listening in wherever you are in the world. I’m Nikki Fox, and I’m in London. And in Edinburgh it’s only Emma Tracey.

EMMA- Oh yes. And we have a great show coming up. We have everything from Dragon’s Den.

NIKKI- Boom.

EMMA- To Love Island.Ìý

NIKKI- Boom.

EMMA- To a wheelchair using GP, if you don’t mind.Ìý

NIKKI- Boom boom.

EMMA- And the surviving member of award winning podcast, You, Me and the Big C, which is all about cancer and absolutely excellent, Lauren Mahon.Ìý

NIKKI- Well, that sounds like a right cracking episode that, Emma. I’m excited.Ìý

EMMA- Yeah, me too.

NIKKI- Now, if you like today’s podcast, or any of our other podcasts, we’ve got a whole load on there, then please search access all on 91Èȱ¬ Sounds, that’s where you’ll find us. If you like us subscribe to us. If you really like us tell your family, tell your friends, tell your colleagues, tell anyone.Ìý

The NHS crisis is already the biggest story of the year, and we’re only two weeks in. Emma, can you give us the latest?

EMMA- Well, A&E and ambulance delays are at their worst level on record. The health service was already under pressure, a result of longstanding problems, but now COVID, flu and now strike action by staff have all added to the sense of crisis this winter. On Tuesday it was revealed excess deaths in 2022 are among the worst in 50 years, with more than 650,000 registered in the UK. And the data indicates pandemic effects on health and NHS pressures are among the leading explanations. And of course, Nikki, the pandemic highlighted that disabled people can be disproportionately impacted, as we know, whenever there’s a crisis in the NHS. And in terms of the pandemic six out of ten people who died with COVID were disabled.

NIKKI- Now to talk to us more about the impact the current situation is having we are joined by Anna Morell from Disability Rights UK, who it’s really nice because I always speak to her on the phone but I’ve never actually met her in person. And somebody I have filmed with before, it’s Dr Hannah Barham-Brown.Ìý

HANNAH- Thank you.Ìý

NIKKI- And they’re both here to talk with us now. Thank you and lovely to be with you both. Thanks for coming in.Ìý

ANNA- It’s great to see you.Ìý

HANNAH- Thanks for having us.Ìý

NIKKI- It’s brilliant. Now, Anna I’m going to start with you, because you were recently in hospital, weren’t you, twice over Christmas, is that right?

ANNA- Yeah, I have to go to hospital quite a lot for this, that and the other, but on Christmas Day my child was hospitalised. She had an infection and was deteriorating. And when the pandemics did arrive they said, ‘Yes, we need to take her in now’. And when we got there I was just gobsmacked at the length of the queue. It was a small regional hospital. I was told that that hospital was chosen because the other one was completely overwhelmed. There was a queue of trolleys, and then behind that a queue of walking wounded snaking round. And then we were at that back of that. But it was clear that the people on trolleys were people who had quite severe illnesses and were quite likely disabled or older people, people with serious health conditions. And the atmosphere in the A&E ward was kind of calm, you could tell that people were doing their best. It didn’t feel overwhelmed like a Friday night full of drunks. But you could feel palpable stress; you could tell that people were sort of at the end of their rope, at the end of their energy, that there’s this kind of pervading sense of despair that there’s just not enough, there’s not enough staff, hours, wards, beds to cope with what’s going on at the moment.Ìý

NIKKI- And did you have a personal experience of being in hospital as well? You were unwell.Ìý

ANNA- Yes, a week or so later I had a car accident and had a suspected head injury, so again had to go to another regional hospital in an ambulance. Again, it was an incredibly stressful physical environment. You could tell that people were just absolutely exhausted. There were no beds. I met several people there with disabilities who were really up a gum tree. So, people weren’t being transferred onto wards, and there were older people in the clinical decision unit, which is effectively an A&E spill over, they’d been there for a long period of time. There were people there in mental health distress who had been waiting hours and hours and hours whilst suicidal with no help. And we find this as well, the number of people referred into CAMHS, which is children and adult mental health units, is up 40% this year. There was someone there with autism and possibly learning disabilities who was just there with a police officer, because he’s taken there repeatedly when he has a meltdown, because there’s no provisional support. So, A&E is dealing with people like that who shouldn’t even be in those kinds of situations because there’s no real provision for people with those kinds of disabilities in the community. And then they’ve got the acute stuff going on as well. The scan unit was just overrun. They were desperate to get me out the second I’d been scanned to get the next one in. I’ve never seen a radiology unit that swamped, and this was at midnight, one in the morning.Ìý

NIKKI- I mean, Hannah, you’ve worked in the emergency department in hospitals, haven’t you? And is this the problem, is the problem the system itself? 

HANNAH- I mean, the whole NHS right now is a bin fire, in a word. And I think we need to look at it as a whole organisation because, yeah, I think patient education and awareness does come into this a little bit about making sure people are getting into the right services; but those services need to be available, and at the moment a lot of them are not. So, people are trying to do the right thing, but if you can’t see a GP, if you can’t get the advice you need, you’re going to end up in A&E. So, there is that additional issue.Ìý

But I think we need to kind of break it down a little bit and look at the different constituent parts of it almost. So, firstly, health and social care hand in hand; we put these together as a society. But in social care before the pandemic there were 125,000 vacancies; that’s gone up to 160,000 since the pandemic. We do not have social care staff. So, as a result the people we would normally discharge out of hospital into social care who need a little bit more support need that care input, there’s nowhere for them to go. Not because the beds don’t necessarily exist, but the staff don’t. So, we’ve got these huge vacancies.Ìý

And then if we look at the NHS itself we’ve got over 108,000 vacancies in NHS staff. We’ve now got a massive recruitment and retention crisis because everyone is so burnt out and exhausted. Last year 6,950 doctors applied for certificates to work abroad. We only admit 8,000 per year into medical school. So, we are haemorrhaging staff as fast as we are making them. Steve Barclay basically said they’re going to buy up the social care beds to discharge people from hospital into beds. Wes Streeting, the shadow secretary of health and social care, called this a sticking plaster. I would go so far as to say it’s a wet plaster hanging off letting infection in. Because firstly, who would normally be in these beds? We don’t have beds sitting empty in social care with no one in them, so would normally be in them that is not going to be able to be in them if we buy them all up for the NHS? And secondly, as you say, who the hell is going to staff them when we have 160,000 vacancies in the UK. We don’t have NHS staff as it is; we have people who normally have care in their own homes having to go into respite facilities because they cannot get carers. So, there is already huge pressure on these beds. And it gets to the point where you’re kind of robbing Peter to pay Paul. If the staff don’t exist, if the beds don’t exist, then this is not a solution, is it? 

NIKKI- And this is a question for both of you, but I’m going to start with you Hannah as well. Why is what’s going on now with everything in the NHS, why is it a particularly scary time for disabled people? 

HANNAH- There’s a huge variety. Disabled people disproportionately need the NHS for things. We have conditions that need NHS care a lot more often, so we’re more likely to need it and we’re more likely to need the NHS in an emergency capacity. We can’t just jump in a car or jump in a taxi necessarily and get ourselves to A&E if needed, so we need ambulances. We don’t have ambulances. And then all of the kind of knock-on of this is that the people who would normally be doing elective procedures, would be running clinics in the hospital, they’re often being pulled down to deal with the acute crisis. So, they’re being put onto the wards to try and discharge people faster. So, the waiting lists grow. All of that elective care that many disabled people, again disproportionately, are waiting for because we’re more likely to need that elective care, that’s getting longer waits, and so our health outcomes are getting worse. And then when you add on to that the social care crisis our health outcomes are worsening because we can’t get the care we need in the community, so we are more likely to become unwell, and then need emergency care again.Ìý

NIKKI- And Anna, you’ve had your own personal experience, but you also work for Disability Rights UK.

ANNA- Yes.

NIKKI- Are you hearing stories at the moment? 

ANNA- Oh god, yeah, absolutely.Ìý

NIKKI- What kinds of stories are you hearing? 

ANNA- What Hannah has just articulated. And the upshot is that we die. We know statistically six out of ten people died of COVID, we know that there’s 1,000 excess deaths a minute a week. A lot of those people are going to be disabled people. We haven’t actually seen that breakdown in stats from the ONS yet, but just knowing that the load of the NHS that we have as a demographic that that’s going to be disabled people who would live with the right care.Ìý

A friend of mine, for example, spent 27 hours with a Hickman line infection, that’s like a stoma tubing, feeding type thing. The last time she had that she ended up in a coma. She’s sat on a plastic chair waiting to be triaged for 27 hours. With a condition like that you can go downhill and die very easily. It’s scary for disabled people.Ìý

EMMA- So, what needs to be done? Starting with Anna.Ìý

ANNA- The government needs to put a massive cash injection, change the criteria on getting people into medical learning quickly, bringing people in from other countries, increasing the quotas. And also appreciating that people already in the NHS need care, they need support. They can’t be working their arses off while falling over. Something has got to give, and the thing that needs to be given is compassion in spades.

EMMA- Hannah what do you think needs to be done? I know it’s a huge question, as I said.Ìý

HANNAH- Firstly we need to invest in social care, is the big thing. We need to tackle that 160,000 vacancies. And to do that we need serious recruitment drives. But we also need to make the job feasible, we need to make sure that we’re paying carers appropriately. The majority of carers in the UK do not get a real living wage. And so why on earth would you do a job that is physically and emotionally demanding when you can do something far better paid, far less stressful, in a different sector? You wouldn’t. So, we need to start respecting social care for the career it is.Ìý

But we also need to look at recruitment and retention in the NHS itself. Obviously there are loads of strikes going on, and I’m not going to go into that in detail, but we do need to be having conversations about what people can reasonably expect from their NHS. We do have people turning up within a couple of hours of a cough starting potentially to a GP. And you’re sort of like we can’t deal with that, because every time I’m dealing with something like that which could be managed with a pharmacist or whatever, I’m not seeing a potential cancer patient.Ìý

NIKKI- A couple of years ago I knew somebody that went to A&E because she had a broken finger nail. And I was thinking maybe don’t do that.Ìý

HANNAH- Please don’t do that.Ìý

NIKKI- Let’s not do that.Ìý

HANNAH- I’m great at many things, not manicures. Please don’t do that.Ìý

NIKKI- No. Thank you so much Anna and Hannah. Honestly it was lovely chatting to you.

EMMA- Thanks ladies.Ìý

NIKKI- So,  we contacted the Department for Health and Social Care but we didn’t hear back.Ìý

Now, to put this in context, because there’s a whole lot going on, we’ve just gone and grabbed the busiest man in the newsroom. It’s health editor for the 91Èȱ¬, Hugh Pym. Hugh, thank you for joining us. This is a right treat.Ìý

HUGH- It’s a treat for me, Nikki, definitely.Ìý

NIKKI- You’ve up the gravitas of this podcast, Hugh. I love it.Ìý

H I’m sure I’m lacking in gravitas.Ìý

NIKKI- Well, Hugh, we know the NHS released its latest performance statistics, what do they tell us? Can you just sort of give us the lowdown? 

HUGH- Well, Nikki, this is the latest monthly update for England from NHS England, and it tells us all about December. It’s really putting into statistics and data what we’ve heard anecdotally: these very long waits at hospitals by ambulance crews, they can’t get back on the road to deal with other patients. That’s because A&E units are clogged up. They can’t get people into beds because there aren’t enough beds. And there aren’t enough beds often because there are patients who are medically fit to leave, but they can’t because of problems in community care. The whole system really needs to be addressed.Ìý

NIKKI- They’re all going into care homes though, aren’t they? 

HUGH- Well, more spaces have been arranged in England for hospitals to discharge patients to care homes. But the stats underpin that. And they show a record low, first of all, for A&E: just 65% who went into A&E in December were treated or assessed in that benchmark four hours.Ìý

NIKKI- Oh wow.Ìý

HUGH- So, that left more than a third waiting more than four hours. And the particularly noticeable, rather shocking figure, is that more than 54,000 had to wait more than 12 hours after a decision to admit. So, they might have waited five or six hours to be assessed, then the hospital says you need to stay overnight for treatment, and they’re waiting 12 more hours, sometimes on a trolley or a chair, to get treated. That’s a record high.Ìý

One more stat for ambulances, perhaps even more alarming, is that there’s a target to get to so-called category 2 calls, that includes heart attacks and strokes, but not the very most urgent. So, the target for category 2 is 18 minutes. The average response time for England in December was more than one and a half hours. So, all of this really paints this pretty depressing picture, and we hear stories every day from patients and ambulance crews, paramedics, they hate being stuck at hospitals with patients, they want to get back out there. And we’ve seen the strikes in the ambulance services, and we hear that very frequently from people out on the road.Ìý

NIKKI- Oh thank you, wonderful Hugh. I know you are the busiest man around at the moment.Ìý

HUGH- Not really.Ìý

NIKKI- Now, we’re going to be working with our colleague, Ruth Clegg, over the next few months to keep on top of this story for 91Èȱ¬ News. So, we would love to hear from you and your experiences of going to hospital or getting any medical treatment if you are disabled or you have mental health issues, whatever. Email us on accessall@bbc.co.uk, and if you could put NHS in the subject line that would be fab.Ìý

EMMA- Nikki, did you see last week’s episode of Dragon’s Den?

NIKKI- No, I didn’t Emma. I’ve been far too busy, which is a shame because I really like the programme. I know about the programme, I’ve seen it many times. It’s on 91Èȱ¬ Two or 91Èȱ¬ One isn’t it?

EMMA- 91Èȱ¬ One, yeah.Ìý

NIKKI- Why are you asking? 

EMMA- Well, it’s a show where people pitch their business ideas to big business people in the hopes that they will invest in their products. And one of those people was Lucy Rowt, and she wanted people to invest in a fancy pill organiser. She takes pills with all her food because of surgery she had a couple of years ago. And here’s a clip of her in Dragon’s Den:

LUCY- Having previously enjoyed social settings I suddenly found myself feeling very anxious, escaping to the bathroom to take my tablets in private. And for a very long time I felt I had something I should be hiding or be embarrassed about. This really wasn’t helped by the fact that when I searched the market for a beautifully designed, durable pill case, I was really, really disappointed to find next to nothing designed for people like me.Ìý

EMMA- Yeah, so Keiligh, our producer, says it looks a bit like a vape or a lipstick case or a fancy tampon holder.Ìý

NIKKI- Yeah, it does look like all three of those, doesn’t it? I was thinking it’s sad that Lucy felt embarrassed.Ìý

EMMA- Do you know what, I think it’s very related by disabled people to have a thing that you need to do that you’re embarrassed to do, so you nip off and you do it quietly. I probably don’t send that many messages in public because I find it really difficult to type them really quickly and I end up dictating them, and I don’t want to do that because it’s not a private way. And I could use a braille display, I could use braille screen input, that’s like typing braille on your phone. But I kind of go into a corner or I’ll go into another room because it’s something that’s different to how other people do it. So, I can relate to that anxiety around something that’s a bit unusual.Ìý

NIKKI- Oh, get that pill box out and get that phone out, Em, don’t you worry about it.Ìý

EMMA- But the pill boxes generally don’t look very nice. You can understand.Ìý

NIKKI- No, she wanted a bit of joosh.Ìý

EMMA- She wanted a bit of joosh.Ìý

NIKKI- And that’s fair enough because I ordered a pill box, not because I take any medication, because I don’t, but I take a lot of multivitamins.Ìý

EMMA- So, you have a pill box, and what does it look like? 

NIKKI- Oh, it is awful. To be fair, I didn’t look for anything jooshy. It was just very functional. A bit like me, Ems. It was long, boring and it had like the Monday, Tuesday, Wednesday, Thursday, Friday, that kind of thing. And I got quite excited about dividing up all my multivitamins and putting them in their little individual squares. Since I got my little container for my multivitamins I’m taking them less. What’s that about? 

EMMA- I think when there’s a middleman between the box, the pills and your mouth it just puts a barrier in the way. I mean, obviously lots of people need to use them because they’ve got lots and lots of tablets and they need to manage them. And it’s really important that they take them and it’s really dangerous if they don’t, or it’s really dangerous if they take too many. So, obviously it needs to be organised. Whereas multivitamins you’re probably not going to overdose on those, are you? 

NIKKI- No, I shouldn’t think so. I did once take a little too much I think it was vitamin C or Omega 3.

EMMA- And what happened? Did your pee just smell funny or something? 

NIKKI- Oh Emma!

EMMA- What? I’m just saying. You know when you eat asparagus?

NIKKI- Oh Emma!

EMMA- What? I notice these things, I’m blind, my smell is like…

NIKKI- Hyper super, super sensitive.Ìý

EMMA- Well, no, it’s just more trained.Ìý

NIKKI- What do I smell like? 

EMMA- Well, I’m not in the same room as you.Ìý

NIKKI- No, not today, but you’ve smelt me a couple of times.Ìý

EMMA- I’m not that good.Ìý

NIKKI- What do I smell like from Edinburgh? No, but we’ve had a hug. Was it perfume or was it cigarettes?

EMMA- It was 90% perfume, 10% cigarettes, I’m not going to lie. Well, now I want to know what I smell like.

NIKKI- I’ll sniff you when you’re next down.Ìý

EMMA- Okay thanks. I’m really glad we’ve had this conversation.Ìý

NIKKI- So am I. Do you remember that time, Em, when we interviewed Tasha Ghouri from Love Island? 

EMMA- Yeah.

NIKKI- Well, Love Island is back. [Love Island theme tune].

EMMA- According to the media there is a visually impaired guy in it.Ìý

NIKKI- Okay. We’ve had a club foot, we had Tasha who was deaf, and now we’ve got a visually impaired person. Are we going along the acceptable disability theme there, Ems?

EMMA- Yeah. So, obviously there’s this thing where every reality show needs to have a diversity plan, and they usually are expected now to have someone with some sort of impairment. But he’s been touted as visually impaired, and the in the next lines of the stories is that he has lost the sight in one eye. When I read this first the kind of blind person in me was like, but that’s not blind or visually impaired, if you can see fully out of the other eye you fully compensate or nearly fully compensate, you can drive. And I looked everywhere and I can’t find anything anywhere to say that he has less than regular or ordinary vision in the other eye. But what I have found out, and what’s kind of stopped me in my tracks and put a halt to my gallop, is that he…

NIKKI- He’s deaf as well.

EMMA- No. He lost the sight in his eye through a football accident when he was eight and he got his retina detached, and he had like ten operations and none of them worked. He had an awful lot of pain in the eye until he was 18. And then he also got bullied because his eye looks different. So, since the accident he’s got two different coloured eyes and one’s a bit cloudy looking, so it looks a bit different. So, even though he isn’t necessarily visually impaired, and I’m happy to be proven wrong on that, he definitely has a visible difference and has definitely had the trauma and the outsider-ness of having an impairment, I think.Ìý

NIKKI- You want the man to be visually impaired, is that what you’re saying, Emma? 

EMMA- No.Ìý

NIKKI- [Laughs].

EMMA- I’m saying that the media shouldn’t say he’s visually impaired unless they know he actually is, because on the RNIB website, with rules for registering blind or visually impaired, it says that if you have full sight in one eye then you’re not visually impaired. So, if he has full sight in one eye he’s not visually impaired, and that is a fact.Ìý

NIKKI- Well, listen you can contact us, if you’ve got anything to add, is Ron visually impaired or is he not, do you, like Emma, want Ron to be visually impaired? 

EMMA- No, stop it!

NIKKI- Please get in touch. Our WhatsApp number:

LAURENCE- 0330 123 9480.Ìý

NIKKI- So, he wasn’t quite singing it, but that was Laurence Clark.Ìý

EMMA- Saying our number. And if you want to say our number send us a voice note.

NIKKI- After you’ve told us whether you want Ron to be visually impaired.Ìý

EMMA- Nobody wants anybody to be disabled per se, do they? 

NIKKI- I think we’d better leave it here, haven’t we? 

EMMA- Yeah.

NIKKI- We’re disabling people.Ìý

EMMA- We can’t be doing that, that’s not right.Ìý

NIKKI- No, we can’t. Our next guest describes herself as having hair like Demi and a gob like Dyer. I love that. After being diagnosed with grade 3 breast cancer age 31 she made it her mission to tackle cancer and all the questions people have head on, no messing, on the award winning podcast You, Me and the Big C. It’s only the magnificence Lauren Mahon. That’s right, isn’t it? 

LAUREN- Yeah.Ìý

NIKKI- Now, Lauren your cancer journey has been very well documented. But for those who haven’t heard You, Me and the Big C, here’s a clip from 2018:

LAUREN- It’s when I refer to myself as having a potato face during treatment. And people will go, no you didn’t. I’m like, I did mate! It’s all right to say it. I look like Maris piper.Ìý

 NIKKI- I look like Maris piper, that is brilliant. Lauren, I’m sure you’ve gone over this time and time again, but for our listeners that don’t know, can you just tell us how you first discovered that you had cancer? 

LAUREN- I was 31 and there was a big old lump in my breast. I wasn’t checking; I found it by accident. I went to a walk-in centre, because I didn’t have a GP, I’d just moved house, to get the lump checked. They said yeah, it needs to be examined but it needs to be referred by a GP, don’t worry about it, you’re young, no family history. So, I didn’t rush. I did eventually with a nudge from my mother, Tina, get into the GP and registered. I was in the breast clinic pretty swiftly, and a week later told I had cancer. I still look back now and it makes me shiver inside a little bit about how it could have gone a very different way, because I wasn’t worried and I was told not to worry.Ìý

NIKKI- Yeah, but actually thanks to your mum you went and got checked.Ìý

LAUREN- Yeah, thanks to Tina, she’s a good woman is my mum.Ìý

NIKKI- She’s a good woman, that Tina. And you know when you first found out that you had cancer it happened very quickly, I was reading that you might have turned to Dr Google. Is that right, Lauren?

LAUREN- Yeah, I think everyone does. I didn’t know anybody else my age, so of course I got onto Google. It’s not the best thing to do. That’s why I think having the community that we have now is so much better because you can ask real people and get real advice, rather than seeing what’s on Google and it gives you everything, the good, the bad and the ugly, and you just automatically go to the ugly, don’t you? 

NIKKI- Yeah. And not much you could relate to. Is that why you set up your blog?

LAUREN- Yes, I set up Girl vs Cancer because I couldn’t really find anyone to talk to on my level. And I don’t mean that in like oh on my level, like a higher level; I mean someone who talks like me, has a kind of similar lifestyle to me, just someone that I could really relate to. Because everything that I was finding online was looking at forums oh my husband did this, and da, da; I’m like I’m single, man, I don’t have a husband or someone to go, you’re beautiful babe, when you really feel like a wart. In all honesty it was also a bit of a control thing because I didn’t want anyone to have a perception of me that wasn’t real, I didn’t want anyone to feel pity. I wanted to show my diagnosis, my journey in my eyes, not what they always show in the media or in leaflets; it doesn’t look like that for everybody.Ìý

NIKKI- So, you set up this blog and then obviously, I don’t know many people that don’t know You, Me and the Big C, it’s so phenomenally popular, how did it all come about? 

LAUREN- It was Rachel Bland. We all kind of followed each other on social media, Deb, Rach and I. She had messaged me on DM one day, she was like I’ve been wanting to ask you something, I’ve got an idea for a podcast, what do you think. I said, oh call me. So, we had a chat and she was like, I’ve just this idea for this cancer podcast where we all talk about it on social media, we talk about it, there’s this community out there, it’s like a conversation I think should be heard. Essentially it’s the same as getting two of your mates down the pub and talking about men; except me and my friends are talking about cancer. It’s the same kind of chat, it’s just what we’re going through. It’s just real raw, unfiltered, as it comes out. You will hear it on the podcast, there are so many things that come out of our mouths that are kind of realisations and epiphanies or actually processing traumas and tears, because when you talk you process. So, what you’re actually hearing is three women processing as we go through the seasons.Ìý

NIKKI- You’re the only surviving member of that original podcast line-up. Rachel died just six months after the podcast launched, then Dame Deborah James last year. How have you dealt with that amount of grief in such a short space of time? 

LAUREN- It’s really weird because I feel like since my diagnosis and like in the cancer community there’s been a lot of loss, like obviously Deb’s and Rachel’s being some of the greatest losses I will experience, you kind of almost don’t get time to process one death and you lose somebody else. It’s the nature of my work. However, I think with Deb it did something to me that I kind of just had to go, I can’t do this much longer, it’s too big a loss. I don’t think I have processed it yet, but I do think it’s because I have still been very much in it, being in the press, talking about Deb, promoting her Bowel Babe fund and all the amazing work she did in those last seven weeks.Ìý

NIKKI- You said you can’t do this much more, what do you mean by that, Lauren? 

LAUREN- Well, Steve and I have recently spoken since Deb died about the podcast and its future, and we’ve both decided that now would be the right time for us to hang up our headphones for the pod.Ìý

NIKKI- Really? 

LAUREN- Yeah. We love it and it’s a public service, but I genuinely don’t feel like this is something that we want to try and keep pushing forward. I think it’s time for us to move on and heal. Steve is expecting twins, he’s remarried, we’re both getting further and further away from our cancer experience. And you can’t heal from something while you’re in it every day. And I already do stuff with my personal charity. When it comes to the podcast having that big gaping hole, that was these two women, I do really truly feel that You, Me and the Big C is a public service, I really want it to continue. I think that door needs to be left ajar. And I think when the right voices present themselves, and that may not be for years, but I think when the right people show themselves I’d love to be the big sister and help them get that kicked back off again.Ìý

NIKKI- For people that don’t know as well, Lauren, who’s Steven?

LAUREN- So,  Steve is Rachel Bland’s widower. Steve came on the pod, we did a podcast with him, Deb and I. We were trying to toy with this idea of how we could continue the pod without Rachel. Rachel had made it very clear she wanted us to continue the pod, even though we were like we’re done, we can’t do this. And she was like, no you are. You’re not going to say no to a dying woman, man, you can’t do that. So, we carried it on, and Steve came on one day really soon after Rachel died, and it just felt right. He’s amazing. I love him. Those guys are my best mates. We really have gone through something amazing together.Ìý

NIKKI- Something we often debate amongst our team, because our beautiful producer, Keiligh, Keiligh has got leukaemia, and what we debate is whether or not cancer is classed as having a disability. I don’t know how I feel. I don’t know how you feel about that term, whether you ever felt that it applied to you? Or might it apply to some? 

LAUREN- While you’re in treatment for sure. And I think people who are in long-term treatment or are undergoing treatments to prevent the cancer coming back. I think there is an element of not being able to do things that you might otherwise have been able to do. When it comes to assistance and help by the government cancer patients get put onto statutory sick pay, can’t afford to live. For what reason? Because they got some rogue cells that have tried to kill them. Surely we should be supporting them more. And I think in that way it is a disability. Some people aren’t able to move, unable to work, unable to eat, unable to do things for themselves. But for a lot of people that is a temporary position to be in. For those who are in long-term cancer treatment, bones wither, what’s the word I’m looking for, muscles weakened.Ìý

NIKKI- Atrophied, weakened, yeah.Ìý

LAUREN- Yeah atrophied. There’s a lot to be said around cancer. I think people just see cancer as the chemo, the radio and the surgeries; and it’s the aftermath of those things. And I just think if we better look after people when they’re poorly they can better look after those around them that they love, they’ll be better in society, and society will be a better place because we’re taking care of people when they need it. I don’t really understand why we wouldn’t.Ìý

EMMA- And they can maybe get better more quickly and get back into work et cetera.Ìý

LAUREN- Yeah.Ìý

EMMA- And of course cancer doesn’t skip disabled people either.Ìý

LAUREN- No, exactly.Ìý

EMMA- Lauren, tell us about this big live show that you’re planning, You, Me and the Big C, coming up very soon? 

LAUREN- So, we have a live show on 25th January. We’re going to be doing it at the 91Èȱ¬ Radio Theatre in London. We’ve wanted to do a tour for a really long time. We talked about speaking at festivals and things like that. And then this thing called COVID came along – don’t know if you heard about that? 

NIKKI- Yeah, little old thing.Ìý

LAUREN- Little old thing called COVID, the little c, and we were unable, it put a pin in our plans. So, we had to kind of go okay, well maybe we can pick that back up. And as we know, as we came out of the pandemic, Deborah fell very ill, deathly ill, and then became iller [sic] and iller to the point where she gave us that horrible news. So, it’s not something we were actually ever able to do. But once we realised that maybe we were doing a long goodbye to the podcast we were like no, we have to do this live, we have to get amongst our audience, we have to see this off properly.Ìý

NIKKI- Because I was reading an article about you last night. My mum’s had a bit of ill health at the moment and she’s turned to the garden. She’s always loved gardening.Ìý

LAUREN- Yes.

NIKKI- But I was reading that’s quite a passion of yours as well. Does that help you get through these like difficult periods of grief, and obviously your own treatment and stuff? Has that always been like a saviour for you? 

LAUREN- For me it’s anything that I can do that gets me into my body and my hands and stuff. When I didn’t have a garden it would be cleaning the house, decorating. I always get out for walks, like doing, sorting. My mum calls my dad Gary Potter because he’s always pottering about. And now it’s like I am Lolly Potter, I’m Loza Potter.Ìý

NIKKI- You’re Loza Potter.Ìý

LAUREN- I am Loza Potter, I do the same. But for me it’s a mental health thing because sometimes if my brain gets overwhelmed or I’m sad I just need to not be in my head; I can get into my body and I can focus on a task. And there’s also that feeling of like gratification and satisfaction seeing things happen and coming to life. So, tending to things and nurturing things I think is really positive.Ìý

NIKKI- It’s the opposite of death in a way, isn’t it? 

LAUREN- When the world feels too big just going right back to the simplest of things I think just makes you put things into perspective, and yeah, it does really help.Ìý

NIKKI- Are you in remission now, Lauren?

LAUREN- Yeah, they don’t say remission with me. I said this once, ‘Can I say I’m in remission?’ But they’re like, ‘No we don’t say remission, because remission means the cancer could come back’. I’m five years clear, which is an amazing milestone, but with breast cancer they don’t like to be like banging all the drums until the ten-year point. So, five years is a massive milestone and it’s really good. I’m just going to keep it trucking for the next ten, then the next ten, and then the next ten.Ìý

NIKKI- Yay!

LAUREN- Yeah, all of the tens of the years.Ìý

NIKKI- Amazing Lauren. Thank you so, so much for coming on. And keep in touch with us as well.Ìý

LAUREN- Of course I will. I can’t wait to speak to you guys again. Take it easy, guys. Bye.

NIKKI- If you or anyone you know is affected by cancer and needs just some advice then search 91Èȱ¬ Action Line, because that will direct you to any kind of support that you might need.Ìý

Blimey, Emma, it’s the end of the show.Ìý

EMMA- That was a really quick one.Ìý

NIKKI- That went fast.Ìý

EMMA- Speedy.Ìý

NIKKI- Faster than our average anyway. Well, I hope everyone liked it. And if you did like it get in touch, because we absolutely love hearing from you. You can tweet us, our Twitter handle is @91Èȱ¬AccessAll. Obviously you can email us, accessall@bbc.co.uk.Ìý

EMMA- And if you are working nights or just drifting in and out of sleep we are on 5 Live in the 4am hour on a Monday, so you might be able to catch us there.Ìý

NIKKI- Late nights with Tracey and Fox, eh? 

EMMA- See you soon.Ìý

NIKKI- See you soon.Ìý

[Trailer]

PRESENTER- You know when you’re worried about something, but then you talk to your friend who knows more about the subject than you do, and straightaway you start to feel better? That’s what we try and do every day on Newscast.Ìý

CLIP- Now, they’re saying that that would be simple to do, it would give everyone certainty.Ìý

PRESENTER- We talk to people who are in the news:

CLIP- You were chasing me round with a plate of cheese.Ìý

PRESENTER- We talk to people who know what’s going on in the news:

CLIP- At least I didn’t get up and slap anybody.Ìý

PRESENTER- We talk to people who understand what the news means:

CLIP- I think that he’s decided he’s going to listen, and then he might just intervene.

PRESENTER- And we talk to the best 91Èȱ¬ journalists, asking the most important questions: 

CHRIS- What’s wrong with chinos? You don’t want them, people to start wearing chinos? 

CLIP- Don’t start me, Chris.Ìý

PRESENTER- That’s Newscast from 91Èȱ¬ News, the podcast that knows a lot of people who know a lot about the news.Ìý

CLIP- And I was like, go on Kate, put some more welly into it!

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