no evacuation alert was issued before the volcano erupted on sunday. now on bbc news, panorama. tessa jowell: nothing else had ever happened to me before, ever. i was getting ready for the thing i was doing in the evening. and the next thing i knew, i couldn't talk. i didn't know what was happening. last may, tessa jowell, the former culture secretary who brought the olympics to the uk, was diagnosed with an aggressive form of brain cancer. while other more common cancers have seen treatment breakthroughs, her cancer has been underfunded and has had no major new treatments for 50 years. injanuary, she returned to parliament to talk about her illness.

we have the worst survival rate in western europe. with treatment sometimes taking a decade to get to patients, tessa and her family began a campaign for wider access to drugs still being tested. for what would every cancer patient want? to know that the best, the latest science was being used and available for them. cheering we followed tessa in her last weeks as she fought her final campaign — to give a voice to the 3,000 families each year whose loved ones are told they may only have months to live. in the end, what gives a life meaning is not only how it is lived... ..but how it draws to a close. hear, hear. applause oh, wow!

oh, my god. you know what? one of mum's dear friends, every week since she got ill, has sent a bunch of flowers. isn't that amazing? literally almost 52 bunches... it would be nearly 52 bunches of flowers. ottie. ottie! more. she laughs this documentary was filmed in april and may this year, 11 months after tessa's diagnosis. she and her daughter, jess, spend as much time as possible with the newest addition to theirfamily. it's just this relationship you have with your mum, with your daughter, it's a really special

thing, you know. 0ttie was only ten weeks old when mum got ill, so there was quite a kind of quick role reversal. i mean, she'd literally come for, like, 20 minutes on her way to a meeting in westminster. it was a really, really magic, magic time. kind of the pain of that transition from your life as it was to what it had suddenly become is really... it's really painful, you know. you go... you kind of go through a bereavement. i mean, ifelt like i was grieving, really. i think we all were. tessa was diagnosed with a type of brain cancer called glioblastoma multiforme. people with her diagnosis have an average life expectancy ofjust over 1a months. i don't think i leapt to the inevitability of cancer. i think i'm very clear about the importance ofjust getting on and dealing with it.

because now my life is day by day. woo! tessa jowell started her career as a social worker before becoming an mp ini992. tessa jowell, 17,000... cheering she served as a health minister when labour won the 1997 landslide election, before joining the cabinet in 2001 as culture secretary. she famously persuaded tony blair to bid for the 2012 olympics. and i hope that all of us willjust reflect about ambition, about never being complacent, about the extent to which we all achieve more together than we do alone. she also helped establish the sure start programme, which gives support to families in deprived areas. it was while she was on her way to a sure start event last may that tessa suddenly had two seizures.

that's what so bizarre about the fact that this has happened to her, you know. she's. .. ..the healthiest, kind of most health—conscious person i know. it's a cruel thing that's happened. but these things happen, don't they? and they happen indiscriminately. a diagnosis of brain cancer is particularly deadly. i think there is a feeling among patients that when you're given a diagnosis, even as devastating as a brain tumour, you'll come to a hospital and of course there will be an answer, there will be 100 drugs on the shelf, we canjust pick those off and treat the patients. the hard reality of brain tumours is that is not true. we have about three treatments that work —

surgery, radiotherapy and perhaps one form of chemotherapy — and those will not cure patients at the moment, not at the rate we want. with surgery, you could remove, say, half of your bowel or half of your liver, even. you simply can't go in and remove large parts of the brain — it's not compatible with life. the uk has the lowest survival rates for cancer in western europe. many patients and oncologists feel that progress is being slowed by the limited chance to test new treatments. as tessa's illness became known, she received offers of emerging treatments. these included an electrical skull cap and access to treatment currently being trialled in the nhs. but these are not available to most patients in britain. i mean, the only time i've ever seen mum cry since she got ill, she was sat in the waiting room and had what she described as the absolutely heartbreaking realisation that those who had that privilege of access or income may well live longer because of that. and those that didn't may well die much sooner because of it.

and in her words, that isjust the most despicable example of inequality. in those moments, her mission was really identified. in april, tessa explained why she wanted to campaign for more access to treatments for brain cancer patients. i think that there is an enormous opportunity here for us to have a better way of more people understanding how they can do more. i really want to go on showing that i can still be someone that can help. and the thing that really matters for people is to feel that they matter. brain cancer might be rare, but it is the biggest killer for those with cancer under a0. i was a self—employed electrician,

so i was on a half—decent wage. i thought i was fit and healthy because i was out playing football once a week, out golfing. that all took a drastic turn when i got rushed into preston hospital. robert howard is 33 and seven months ago was diagnosed with the same aggressive form of brain cancer as tessa. when i got out and started reading up on it, it was pretty common for people my age, in their 305. it seems to be 305 and 505. sit. 0r chew your lead! come on. with standard treatment on the nhs, three in four people with this type of brain cancer don't survive beyond a year. robert want to go on a clinical trial, but only 4% of glioblastoma patients can get on one. it i5ju5t doing 5can5, blood5.

if they're ok, i'll carry on with what the nhs 5ay5. but there might become a point where they can't do that any more. even for those who get on a standard clinical trial, usually only one drug is tested at a time. with trials taking years to complete, this means many patients won't live long enough to try something else. they have very specific entry criteria and there are only a small number of slots available. so on a uk—wide ba5i5, the proportion of patients who go into those trials is very small. it's just a few percent. so for the vast majority of patients with this diagnosis, at the moment we are not able to offer them entry to clinical studies. with limited time for brain cancer patients, tessa and herfamily think the options for new treatments on the nhs are too narrow. if we just were having the treatment that we were given through the health service, mum wouldn't have had any treatment

since august last year, and we're now in the beginning of may. they are campaigning for patients to have more control over their treatment and believe adaptive trials would be fairer. this would mean patients could access more treatments that are still going through trials and are not proven to work on a larger scale. adaptive trials, basically, what that means for patients is you will have a choice of lots and lots of different things that you can try under the guidance and protection, supervision of your oncologist at the hospital where you are also having your standard of care, so that, you know, when you face a diagnosis like this, you are not just told you have one option and that option is not going to save you. you get to try loads of treatments, lots of which could have benefit for you. we will do everything that we can. everything we can, darling.

everything we can. it's an argument that has been met with caution in the past. adaptive trials are not yet used routinely in any country in the world. while many oncologists are keen to adapt existing trials, they are cautious about the side—effects and benefits of less—thoroughly tested treatments. you know, we've heard this, haven't we, mum? it's like, you know, does the risk outweigh the benefit of trying this thing? we don't know. it's like, there's certain risk if you do nothing with glioblastoma that you will die within months, not years, so the risk of doing nothing seriously outweighs the risk of trying. that's a no—brainer. want another colour? jack sanders also has the same tumour as tessa.

it is the most common and aggressive cancerous tumour in adults. when someone tells you there's nothing more we can do, it's time to go home and put your affairs in order — so get yourself comfy in bed, basically, and die nice and warm — it's not a nice thing. jack received nhs treatment for 27 months before he could no longer continue treatment. i can't expect them to just pull something out of a magic hat, that's all they've got, and if that don't work, then it's unfortunate, isn't it? i mean, i get up every day, every day i type in glioblastoma on google and i search it and i check the news. people in my predicament and my situation are willing to go anywhere. i'd go to timbuktu if i had to. he is raising thousands of pounds from friends and family to go to germany for treatment not available in the uk.

he wants to spend more time with his family and feels he needs to give other treatments a try. how have you been feeling since daddy's been poorly? well... it's not been... it was a lot easier before, because... it wasn't physical, was it? you couldn't see that he was poorly. because he looked so well, you could forget that he is poorly. now his left side's gone... ..it's a bit more obvious that he is poorly. but he keeps fighting for us, doesn't he? and i always will.

daddy's not going nowhere, is he? no. with people all over the world trying different treatments, data—sharing is another major part of tessa and jess's campaign. if patients are at the heart of this, these missions for cures and for potentially life—saving or life—extending treatments... ..then why on earth wouldn't we do everything that we possibly could to accelerate that process? they think a new global database that includes adaptive trial results and even individual treatment data could help researchers discover what treatments are working faster. tessa is keen to share her own data. australian billionaire andrew forrest has offered to fund the establishment of a global database on brain cancer. baroness, we are making really serious progress.

since you gave me the permission to say you were going to be the first signatory on the universal cancer databank, we've been able to reach out to people all over the world. good. oncologists and patients all over the world are saying data is the key. we just have to collate it and organise it, through mustering the powers of governments, individuals and patients to drive their own data, to create a massive pool of data which is for free and equal access for oncologists and researchers qualified all over the world. but there is caution amongst some researchers about how to collect good—quality data from so many different types of treatment. however, through collaborating with pharmaceutical companies, governments and using artificial intelligence, tessa and andrew's hope is that these barriers can be overcome. and we're going to carry on with... we're going to carry on with that.

and i can see now, clearly, she wants her suffering to have meaning, meaning to others. she wants to have her suffering help avoid the same fate of potentially thousands if not millions of others. i, baroness tessa jowell, hereby volunteer to share my medical data with the universal cancer data bank. thank you. wonderful. absolutely beautiful. every day, patients are told that there is nothing left that can combat their brain tumour. robert was diagnosed eight months ago and, so far, the treatment has kept the tumour stable. today, he is nervous. he is going for a scan to investigate an unusual haze noted in his last test. i try and be positive. i am positive and always have been. i know what i've been told, and just try and enjoy one day at a time. i'm not going to let it ruin my life, basically. is it all right, robert?

yeah, fine, thanks. ok, i'm just having a quick look at that one and then i'm going to give you a little bit of that dye. it's a tense wait for his wife, emma. i'm going to pop some of that dye in now. yeah, this one's the big one because obviously we don't know what the haze is. if it is, it could be another tumour. obviously if it is something, we could go down that road again of another operation. or they could potentially not let him on the chemo any more. if the treatment stops working and his tumour grows, his only other option would be to seek alternative treatment outside the nhs. hundreds of british patients go abroad every year seeking treatment options beyond what the nhs will currently provide. jack and mum sandy have travelled to a clinic in cologne.

tessa was treated by the same clinic last year, but it's not cheap. so far, sandy has raised £80,000. this is jack's sixth trip, and they are keen to know if it is working. people keep asking me how treatment is going and i have to say i don't know, because this will be the first time that we've had actually any blood... feedback. yeah, sort of feedback from it, so... yeah. well, we don't want any bad ones. we don't want bad results, no, but you feel well, so that's got to be a positive. i keep saying that. and here on the right side, please. this clinic offers a complex type of immunothera py, a treatment that fights the tumour by stimulating the immune system. this type of immunotherapy is not currently used in the uk. and even in germany, it is only privately available. many nhs oncologists say they can't recommend treatment like this because it is currently hard to prove a definite benefit. i don't think we are giving any

false hope to the patient. first step is stabilisation. if you already can get that, then step one is then done. the patient makes the hope out of it, but we start from the reality and from the aim. the challenge is being able to afford to get these treatments. and people have been really kind and they've donated and they've come to the fundraiser, so we've actually managed to get enough to be able to come for these treatments. up to yet. the funds are running very low at the moment now, so whether we can afford the next one or not... i mean, who's to say that this won't work? you know, you just have to try everything. and if people don't try these things, then nobody's going to know whether they work or not.

you got the final report, or...? we got this, but it's all very... we don't understand this. where is it? there you are, pass it to him. it'sjust nice to have it explained. yes, that's the elispot result. so here is the same letter... "can i be cured?" that's the ultimate question of each patient. to prove the single efficacy of the immunotherapy arm is very difficult. but lots of research centres, including ours, have long—term overall surviving patients. we can be happy with those results, can we? for me, we are on track and there is for me no reason to change at the moment. so we can leave happy? yes. as the sun is outside... they laugh

for now, jack appears to be stable. with more treatment recommended, his family will need to raise £3,500 in order to return. anyone that has a child — and it doesn't matter whether they're two, 22 or 32, it's still their child — and i will do anything to get my son to live longer to see his little girlgrow up. because, you know, that's what mums do. i mean, my own father died of glioblastoma, i understand the challenges associated with that. and it's the patient‘s choice at the end of the day, it's their life, they can choose what they want to do with it. our responsibility as physicians and scientists is to make sure that we develop the cures that are available for all, that is our focus. what we are trying to plan is a new framework for patients with brain cancer in the uk

so that we can offer more patients access to different sorts of new treatments, so that a far higher proportion of our patients get access to trials and that we run these trials more efficiently, so we're notjust testing one drug ata time. it's the middle of april and a huge day for tessa. she returned to her old workplace, the houses of parliament, to lobby those in government who can change things from the top. how are you doing? i'm good. yeah? i'm fine. i'm not afraid of what might happen, or anything else. can ijust say that, you know, for brain cancer, things will be different because of your campaigning. 0h. oh, well... and you really need to know that. you know, the nhs does a brilliant job but there are things we can do better. and you've sort of put that spotlight on... because it's a horrible

cancer, it's a rare one. it is a horrible one. and the rare cancers are sometimes the poor relations... yes. because the funding goes into the areas where there are lots and lots of people... i'm so glad that you've got that, you know what we're trying to do and it is difficult. and i will go on doing everything i can to help people with that. sorry, i'm not being terribly... we know exactly what you're saying. we know what you're saying. these guys have put it down on paper, so there's no... there's no ducking all the things that we've got to sort out. they have been quite a centre of that. it is about inspiring people and it's a different way of doing politics to the norm. we're so proud of you, we really are. well, i feel very lucky. very, very, very lucky.

and also, i think the other thing is having time to do more and to go on trying to do as much as i can. and then there will be a point at which i won't be able to do it any more! it may happen. but not yet. not yet. a long time. not yet. later the same day, there was a debate in the house of commons on the future of cancer care. tessa came to watch. we now come, colleagues, to the backbench motion on cancer treatment. it's my honour, privilege and joy to welcome baroness jowell, tessa jowell. you loved this place. i hope it is blindingly obvious to you, tessa, that we love you. here, here!

she mouths applause as the day drew to a close, tessa held a reception to see her colleagues. they cheer jess: you know, we've seen too much and i see so clearly what needs to happen. this is absolutely at the centre of her current sense of purpose. you know, it's everything. for those of us, all of us, who love the nhs, it really isn't good enough that, despite huge effort by successive governments, our cancer survival rates lag other countries in europe, and we want to put that right. there's much that we can do to turn that around on the data, on the adaptive trials, which, you know, i will say i didn't know very much about until tessa brought it to my attention. but there's much we can do on that...

they laugh i'm getting to know an awful lot more about it, which is i think what you want. with you, tessa, when you faced the biggest challenge of your life, getting a tumour, you didn't have to rip up government policy on brain cancer and tell us to start again, but you did. they laugh and we are just so proud of the legacy that you're going to leave for people who get brain cancer in the future. thank you. applause i hope i'll go on doing this always. they cheer i have had so much love, so much care, so much attention. i also want other people to have the same as i have. i hope that i've given whatever

i can do but i also know how much kindness i've had — that it's made it easier to deal with what i've had to deal with. jess: she always says, "this is not about me, "this is about everyone else." and she absolutely means it. and it's true, it isn't... this is about everybody else. it has to be. the scan went really well. the results are very good. they explained to me that its stable. so they're going to let me continue with the chemo tablets. round five, here we come, really, isn't it? yeah. he just wants to go.

he says he's fed up of fighting. and i'm trying to sort of persuade him that, no, it's not time. maybe something will happen to get rid of it. maybe within the next month somebody will find a cure, maybe they won't. but i live in the hope that they will. on the 12th may, a week after we last filmed, tessa died. the next day, the government doubled its funding into brain cancer research and have named the fund after her. tessa has brought a massive amount of attention, both in government and across the public. i've been studying brain tumours for 30 years and there's no question in my mind this is actually a fork in the road, it really is a sea—change moment, i think, for brain tumours. jess continues her mother's campaign for more research and to make adaptive trials available to all brain cancer patients. subtitles by red bee media welcome to bbc news,

broadcasting to viewers in north america and around the globe. my name is mike embley. our top stories: children take cover from military planes in myanmar. we have a special report. on 11 april four fighter jets fired on the village. we also heard that the army had raped women and tortured old people nearby, so we left. new explosions causing more people to flee their homes. nearly 200 are still missing. primary fever. american political parties choose more candidates for november's midterm elections. and the venue is confirmed for next week's summit between donald trump and north korea's kimjong—un — the luxury capella hotel