Y Pwyllgor Iechyd a Gofal Cymdeithasol
Health and Social Care Committee
29/06/2023Aelodau'r Pwyllgor a oedd yn bresennol
Committee Members in Attendance
| Gareth Davies | |
| Joyce Watson | |
| Mabon ap Gwynfor | Yn dirprwyo ar ran Rhun ap Iorwerth |
| Substitute for Rhun ap Iorwerth | |
| Russell George | Cadeirydd y Pwyllgor |
| Committee Chair | |
| Sarah Murphy | |
Y rhai eraill a oedd yn bresennol
Others in Attendance
| Dr Jo Hayes | Marie Curie |
| Marie Curie | |
| Helen Thomas | Iechyd a Gofal Digidol Cymru |
| Digital Health and Care Wales | |
| Natasha Wynne | Marie Curie |
| Marie Curie | |
| Professor Dyfed Huws | Uned Gwybodaeth ac Arolygaeth Canser Cymru |
| Welsh Cancer Intelligence and Surveillance Unit |
Swyddogion y Senedd a oedd yn bresennol
Senedd Officials in Attendance
| Claire Morris | Ail Glerc |
| Second Clerk | |
| Helen Finlayson | Clerc |
| Clerk | |
| Rhiannon Williams | Dirprwy Glerc |
| Deputy Clerk |
Cynnwys
Contents
Cofnodir y trafodion yn yr iaith y llefarwyd hwy ynddi yn y pwyllgor. Yn ogystal, cynhwysir trawsgrifiad o’r cyfieithu ar y pryd. Lle mae cyfranwyr wedi darparu cywiriadau i’w tystiolaeth, nodir y rheini yn y trawsgrifiad.
The proceedings are reported in the language in which they were spoken in the committee. In addition, a transcription of the simultaneous interpretation is included. Where contributors have supplied corrections to their evidence, these are noted in the transcript.
Cyfarfu’r pwyllgor yn y Senedd a thrwy gynhadledd fideo.
Dechreuodd y cyfarfod am 09:29.
The committee met in the Senedd and by video-conference.
The meeting began at 09:29.
Bore da. Croeso, pawb. Welcome to the Health and Social Care Committee this morning. As always, our meetings are bilingual, and we're operating in a hybrid format today. I move to item 1, and we have apologies this morning from Jack Sargeant and Rhun ap Iorwerth, and we're very pleased that Mabon ap Gwynfor is subbing for Rhun this morning. So, welcome, Mabon.
If there are any declarations of interest, please do say now. No.
In that case, I move to item 2, and this is our seventh evidence session for the committee's inquiry into gynaecological cancers, and will be hearing, in this session, from representatives from the Welsh Cancer Surveillance Intelligence Unit—that's a mouthful, isn't it—and Digital Health and Care Wales. I'd like to welcome our two witnesses this morning and perhaps I'll just ask them to introduce themselves for the public record.
Bore da. Dyfed Wyn Huws ydw i. Dwi'n gyfarwyddwr yr Uned Gwybodaeth ac Arolygaeth Canser Cymru yn Iechyd Cyhoeddus Cymru, ac yn athro anrhydeddus mewn iechyd y cyhoedd ym Mhrifysgol Abertawe.
Good morning. I'm Dyfed Wyn Huws. I'm director at the Welsh Cancer Surveillance Intelligence Unit in Public Health Wales, and an honorary professor in public health in Swansea University.
Thank you, Dyfed. And Helen Thomas.
Bore da. I'm Helen Thomas. I'm the chief executive of Digital Health and Care Wales.
Thank you, both, for being with us this morning. I know you've both indicated that you're happy to be called 'Dyfed' and 'Helen', so thank you for that. There's a common theme across much of our work when it comes to data, or the lack of data—it's a common theme across nearly every one of our inquiries, I think—but a massive issue is what the chair of the Wales Cancer Alliance said with regard to data gathering, and called on the Welsh Government
'to get to grips with our data'.
So, perhaps it would be useful, in this opening session, if you could both set out your roles and responsibilities in terms of enabling the collection of data, and the analysis of cancer data, I suppose, in particular in Wales. Dyfed, I'll come to you first.
Af fi yn gyntaf, ie? Ie. Hoffwn i wybod manylion sylwadau yr alliance rhyw dro arall. Mae'n bwysig ein bod ni yn deall beth yw eu cwynion a'u gofidiau nhw, felly mae hynna yn rhywbeth efallai gwnaf i edrych mewn iddo fe eto.
Felly, fy rôl, a rôl fy nhîm, yn bennaf, yw casglu gwybodaeth am bob achos o ganser ym mhoblogaeth Cymru. Rydyn ni'n creu bas data newydd sbon ar gyfer y pwrpas yna, a'i bwrpas e wedyn yw bod ein dadansoddwyr, bob blwyddyn, yn creu ystadegau swyddogol a statudol am fynychder, incidence, canserau o bob math, goroesi a marwolaeth—cyfraddau marwolaeth o'r canserau yna. Does yna ddim un ffynhonnell arall yn edrych ar y boblogaeth yn gyfan, a does yna ddim un ffynhonnell arall yn defnyddio amryw o ffynonellau amrwd o ddata, o fan hyn a man draw, er mwyn sicrhau gwybodaeth a'n bod ni'n darganfod pob achos. Felly, yn y bôn, dyna ein prif rôl.
Mae gennym ni rolau eraill fel ymchwil, a gadael i ymchwilwyr eraill gael gafael ar ein data mewn ffyrdd saff, wrth gwrs—fod enwau pobl ddim yn cael eu datgelu—a'n bod ni hefyd yn gwneud ymchwil fel bod angen, ac rydyn ni wedi gwneud tipyn o hynny yn ystod y pandemig, er enghraifft. Rydyn ni yn defnyddio'r data i werthuso, er enghraifft, y rhaglenni sgrinio, ac mi ydym ni hefyd yn bwydo ein gwybodaeth yn ôl i'r rhwydwaith canser a'r byrddau iechyd, er enghraifft, fel eu bod nhw yn gallu defnyddio ein gwybodaeth ni, yn ogystal â'u gwybodaeth nhw, am eu gwasanaethau i wella'r sefyllfa i gleifion.
Hefyd, dylwn i ychwanegu fod tipyn o'r ymchwil yna, a thipyn o'n data, yn cael eu huno yn ddiogel gyda rhaglenni ymchwil rhyngwladol, a'r rheini sy'n ein galluogi ni, wedyn, i weld ble rŷn ni'n sefyll o ran mynychder marwolaeth a goroesi yn erbyn gwledydd eraill gorllewinol y byd sydd â systemau gofal cynradd, meddygon teulu tebyg i ni. Er enghraifft, buasem ni'n cymharu yn erbyn Canada ond nid yr Unol Daleithiau, achos y systemau iechyd, fedrwch chi ddim eu cymharu nhw. Ie, dyna ni, yn y bôn.
I'll go first. I'd like to know the details of the comments from the alliance at another time. It's important that we do understand what their complaints and concerns are, so that is something that I'll look into again.
So, my role, and my team's role, primarily, is to collect information about every case of cancer in the Welsh population. We create a new database for that purpose, and its purpose, then, is so that our analysts, every year, create statutory and official figures regarding the incidence of all cancers, survival rates and the death rates from those cancers. There is no other source looking at the whole population, and there is no other source using a range of raw sources of data from here and there, in order to ensure information and that we find each case. So, essentially, that's our main role.
We have other roles, such as research, and allowing other researchers to have access to our data in a safe way, of course, so that people's names, for example, aren't revealed, and we also undertake research as required, and we've done quite a lot of that during the pandemic, for example. We do use the data to evaluate, for example, the screening programmes, and we also feed our information back to the cancer network and the health boards, for example, so that they can use our information, as well as their own information regarding their services, to improve the situation for patients.
Also, I should add that quite a lot of that research and our data are joined up safely with international research programmes, and those then enable us to see where we stand in terms of the death rates and survival rates in comparison with other countries in the western world that have primary care systems, GP systems that are similar to ours. For example, we would compare with Canada but not the USA, because you can't compare those health systems. So, yes, that's where we are, essentially.
Thank you, Dyfed, that's really helpful. In terms of my opening comments, I think our evidence has been published in terms of the Wales Cancer Alliance, but we'll ask the team to get that from our public website, and send you a link to that, so you can see—
And I'd be happy to work with them, to understand that and work on that, if they're so willing.
That's helpful. I suppose it would be good to know who sets the priorities for what data you do publish and what data you analyse. Who sets that?
So, actually, it's one of the statutory functions.
Mae e'n un o roliau statudol Iechyd Cyhoeddus Cymru, ac felly, rydyn ni yn casglu'r wybodaeth, yn ôl safonau rhyngwladol. Y rheswm am hynna ydy ein bod ni wedyn yn gallu cymharu'n gwybodaeth yn deg â gwledydd eraill sydd â chofrestrfeydd canser. Felly, rydyn ni'n cyhoeddi bob blwyddyn ar nifer o wahanol fathau o ganser, gan gyfrif canserau gynaecolegol. Felly, rydyn ni yn torri lawr yn ôl canser y groth, ceg y groth, yr ofari, a hefyd mae gwybodaeth gyda ni, os oes angen, ynglŷn â chanserau mwy prin, fel canserau'r wain neu ganserau'r fwlfa, er enghraifft. Hefyd, am efallai ymchwil penodol neu beth o'n hymchwil rhyngwladol, rydyn ni hefyd yn gallu torri hwnna i lawr ymhellach i'r mathau penodol, er enghraifft, o ganser yr ofari, gan ddibynnu ar y math o gelloedd, ble yn union yn yr ofari y mae'r canser wedi dod ohono. Felly, mae tipyn o wybodaeth gyda ni; rydyn ni'n gwybod pa safon yw diagnosis y canser, pa driniaeth y mae'r bobl wedi ei chael, ac yn y blaen.
Felly, dyna pam y mae gen i ddiddordeb i ddeall y pwyntiau y mae'r alliance wedi eu codi, achos mae gennym ni—. Ein prif broblem ni fel cofrestrfa, a dwi ddim yn siŵr a yw hwn yn sail i un o'r gofidiau, ydy, oherwydd yr holl waith casglu gwybodaeth a manylion data, ac i wneud yn siŵr ei fod e o ansawdd ac yn gywir, mae'n cymryd tipyn o amser. Mae gen i staff sydd wedi eu hyfforddi'n arbenigol iawn, a dydy'r wybodaeth yn un ffynhonnell o wybodaeth amrwd o'r gwasanaeth iechyd ddim o reidrwydd â phob manylyn rydyn ni ei angen, ac rydyn ni'n gorfod ei tsiecio fe yn erbyn ffynhonnell arall. Mae yna ddiffiniadau rhyngwladol wedyn. Er enghraifft, rydych chi'n siŵr o fod wedi clywed am System Gwybodaeth Rhwydweithiau Canser Cymru, a bod record yn hwnnw o ddyddiad y diagnosis. Nawr, gallai hwnna olygu y dydd y gwnaeth y meddyg ddweud wrth y claf, neu fe allai fe olygu pryd roedden nhw'n hyderus yn ôl gwahanol brofion. Ond er mwyn i ni gymharu â gwledydd eraill, mae yna ddiffiniad penodol o'r dyddiad diagnosis rydyn ni'n ei gymryd o sail y gwahanol ffynonellau amrwd o ddata i gyd. Felly, beth mae hwnna'n ei olygu ydy, er enghraifft, yr wythnos diwethaf, fe wnaethom ni gyhoeddi ystadegau pum canser penodol, gan gyfrif canser yr ofari, a dweud y gwir, ar gyfer 2020. Ac wrth gwrs, mae 2022 wedi gorffen. Rydyn ni'n gwneud blynyddoedd calendr bob tro; dyna'r safon ar gyfer epidemioleg, blynyddoedd calendr. Rydyn ni wedi syrthio ar ôl o ran y lag yna. Roeddem ni'n un o'r cofrestrfeydd cyflymaf ym Mhrydain cyn y pandemig, ond am amryw reswm, mae'r tîm wedi crebachu a dyw e ddim mor fawr ag oedd e, ac mae yna oblygiadau i hynna. Mae yna dipyn o waith data i fynd trwyddo fe, hyfforddi pobl newydd, ac mae e wedi'n harafu ni.
It's one of the statutory roles of Public Health Wales, and therefore, we do collect that information, according to international standards. The reason for that is that we can then compare our information fairly with other nations that have cancer registries. So, we publish every year information on a number of different cancers, including gynaecological cancers. So, we do break it down according to womb cancer, cervical cancer, ovarian cancer, and also we have information, if required, regarding rarer cancers, such as cancers of the vagina or of the vulva, for example. Also, perhaps for specific research or some of our international research, we can also break that down further to the specific types, for example, of ovarian cancer, depending on the types of cells, where exactly the cancer has stemmed from in the ovary. So, we have quite a lot of information; we know what standard is the diagnosis of the cancer, what treatment patients have received, and so on.
So, that's why I'm interested to understand the points that the alliance have raised, because we have—. Our main problem as a registry, and I'm not sure whether this is a basis to one of the concerns, is that, because of all the work involved in collecting information and the details of data, and ensuring that it is of quality and that it is correct, it takes quite a lot of time. I have staff that have been trained specifically in this, and the information from one source of raw information from the health service doesn't necessarily have every detail that we require, and we have to check it against another source. There are international definitions then. For example, you've probably heard of Cancer Network Information System Cymru, and that there's a record there regarding the date of diagnosis. Now, that could mean the day that the doctor told the patient, or it could mean where they were confident according to different tests conducted. But in order for us to compare with other countries, there is a specific definition of the date of diagnosis that we take on the basis of all the different raw sources of data. So, what that means is that, for example, last week, we published statistics regarding five specific cancers, including ovarian cancer, as it happens, for 2020. And of course, 2022 has finished. We do calendar years every time; that's the standard for epidemiology, calendar years. We have fallen behind in terms of that lag. We were one of the fastest registries in Britain before the pandemic, but for various reasons, the team has shrunk and it's not as large as it was, and there are implications to that. There's quite a lot of data work to get through, training new people, and it has slowed us down.
So, just to help me understand, if you have collected data and you've carried out analysis of that data, it sounds like you don't always publish it—is that right?
Rydyn ni'n cyhoeddi'r rhan fwyaf sydd gennym ni ar lefel uchel, ac, fel y dywedais i, os oes gofynion penodol, rydym ni yn gallu mynd lawr yn fanylach. Mae hawl gan ymchwilwyr eraill a sefydliadau eraill o fewn yr NHS i gael mynediad at y data yna, o ran diogelwch data, bod unigolion ddim yn cael eu datgelu. Rydym ni'n mynd lawr at ganserau prin, prin iawn—ambell i achos bob blwyddyn, efallai dim weithiau—ac yn ystadegol mae'n anodd gwneud synnwyr o hynny bob tro. Buasai'n rhaid i ni efallai cymryd 10 mlynedd o ddata am ganser prin iawn i wneud unrhyw synnwyr o'r gyfradd, er enghraifft. Felly, mae gennym ni ddata am bob un achos, ac rydym ni'n gallu manylu achos mae'r staff wedi'u hyfforddi o ran dosbarthu gwahanol fathau o ganser.
Hefyd, wrth sôn am wahanol fathau o ganser, os y caf i, mae yna ddatblygiadau data newydd trwy'r amser. Efallai fy mod i wedi bod yn euog yn y gorffennol o eisiau mwy a mwy o hwnna heb roi digon o sylw i'r ffaith bod hynny yn golygu mwy a mwy o waith i'r tîm. Mae yna sgil effaith i hynny ein bod ni'n mynd yn arafach wedyn drwy trio cael mwy. Mae e'n ddeilema, onid yw e? A'r prif ffynonellau diweddar—. A dylwn i ddweud hefyd ein bod ni'n cydweithio â thîm Helen yn fawr, achos mae lot o'r data amrwd amrywiol yn dod o lawr yr NHS yn yr ysbytai, ac mae e'n cael ei gasglu ar lefel genedlaethol gan dimau Helen, ac rydym ni'n dibynnu ar hwnna wedyn i ddod i mewn i ni gael gweithio arno fe. Mae hynny ar gael yn eithaf buan; mae'r oedi gyda ni.
Er enghraifft, mae'r data cemotherapi, SACT, a triniaeth arall fel imiwnotherapi yn rhan o SACT, a hefyd rydym ni wedi cael data radiotherapi safonol ers rhai blynyddoedd nawr. A'r cam nesaf yw rydym ni'n gweithio efo NHS Lloegr, ble roedd eu cofrestr canser nhw wedi ei oedi yn ystod y pandemig, ond rydym ni cyn bo hir yn mynd i gael gwybodaeth genynnol ar yr achosion o ganser ble mae hynny wedi cael ei gymryd ac edrych arno yn y deiagnosis. Mae hynny'n cyfrif newidiadau genynnol neu efallai receptors hormonaidd sydd ar wyneb celloedd y canser. Ac yn y dyfodol, dwi'n credu na fyddwn ni'n dosbarthu canserau fel canser y fron, canser yr ofari neu ganser y coluddyn; byddwn ni'n eu dosbarthu nhw o ran canser o'r math o newidiadau yn y genynnau sy'n digwydd bod yn y colon neu'r fron neu'r ofari, er enghraifft. Ond, ar hyn o bryd, rydym ni'n mynd yn ôl yr anatomeg.
We publish most of the data that we have at a high level, and, as I said, if there are specific requirements, we can delve deeper into the details. Other researchers and organisations within the NHS have a right to have access to that data, in terms of data security, so that individuals aren't identified. We go down to very, very rare cancers—a few cases each year, perhaps none at all sometimes—and statistically it's difficult to make sense of that every time. Perhaps we'd have to take 10 years of data for a very rare cancer to make any sense of the rate, for example. So, yes, we have data for every case, and we can provide details on those cases because staff have been trained in the classification of different types of cancer.
Also, in talking about different types of cancer, if I may, there are new data developments all the time. Perhaps I've been guilty in the past of wanting more and more of that without giving enough attention to the fact that that means more and more work for the team. There's a knock-on effect to that, that we slow down in trying to get more. It's a dilemma, isn't it? And the main sources recently—. And I should say that we do work extensively with Helen's team, because a lot of that raw and varying data comes from the floor of the NHS in hospitals, and it is collected at a national level by Helen's teams, and we rely on that then to come in to us for us to be able to work on it. That is available quite soon; the delay is with us.
For example, the chemotherapy data, SACT, and other treatments such as immunotherapy that are part of SACT, and also we've had quality radiotherapy data for quite a few years now. And the next step is that we're working with NHS England, where their cancer register was paused during the pandemic, but soon we're going to receive genetic information on the cases of cancer where that has been collected and looked at in the diagnosis. That includes genetic changes or hormonal receptors that are on the walls of the cancer cells. And in the future, I think we won't be classifying cancers as breast cancer, ovarian cancer or bowel cancer; we'll be classifying cancers as the types of changes in the genes that happen to be in the colon or the breast or the ovary, for example. But, at the moment, we're going according to the anatomy.
Thank you, Dyfed. Sarah Murphy.
Thank you very much, Chair, and thank you both for being here today. I'm going to drill down a little bit more into the access to cancer data. So, my first question is: how do you work with the Wales Cancer Research Centre to ensure academics and clinicians have access to cancer data, and the tools that they need to analyse that data as well? Because we did hear from Sadie Jones, who was representing the Wales Cancer Research Centre, that she has
'all of that data available in my hands,'
but she doesn’t have the resource and skills to analyse it. So, why isn’t there more joined-up working around this? Who would like to go first? Helen.
Helen, do you want to come in? There we are.
Yes, I can come in on that. So, I haven't got specifics I'm afraid, Sarah, on that, but definitely the data would be available and our teams would be happy to help, to be honest. I've been given, as you can imagine, some prep from my team and I can see Sadie's name actually on a list of work that the information team here have been doing on that. So, the data that is available and that can help them in that way, we would be more than happy to help Sadie in terms of limited resourcing in that area.
Thank you very much.
Dyfed.
Ie, diolch yn fawr. Mae hwnna'n gwestiwn digon teg. Dwi o'r farn ei bod hi'n bwysig bod data ar gael i ymchwilwyr ac hefyd i glinigwyr o ran y gwaith gwella allbynnau canser. Mae hynna'n bosibl i raddau. Os yw ymchwilwyr angen edrych ar ein data ac mae e'n rhan o brosiect ymchwil cymeradwy, mae modd gwneud cais am ein data ni, ac rydym ni angen gweld y caniatâd sydd ganddyn nhw i wneud hynna. Unwaith eto, tîm bach sydd gen i, ac mae’n cymryd gormod o amser, a dwi ddim yn hapus am hynna, ond mae’n rhaid i fi weithio o fewn fy nghyllid, yn anffodus. Felly, rydyn ni yn tynnu allan y wybodaeth y maen nhw eisiau am ba bynnag canser, y manylion, fel yr oeddwn i’n sôn amdano gynnau. Mae hynny'n bosib, os oes caniatâd.
Hefyd, bob blwyddyn, rydyn ni’n rhoi’r gofrestr newydd i mewn i’r banc data SAIL ym Mhrifysgol Abertawe, a gyda nhw mae gen i’r gadair anrhydeddus. Dwi yn clywed cwynion am fynediad i hwnna yn aml gan rai ymchwilwyr. Dwi yn edliw gyda hynna; dwi’n credu mai lot ohono fe oedd am gamddealltwriaeth o sut mae e i gyd yn gweithio. Ond mae hwnna yn bwll enfawr ble fedrwch chi gysylltu’r wybodaeth canser yn ddiogel ac yn anhysbys gyda phob data arall NHS sydd ynddo, a data, efallai am yr amgylchedd, ac yn y blaen. Felly, efallai mater o ymwybyddiaeth yw e ynglŷn â beth sydd ar gael, a beth sy’n bosib.
Dwi yn gweithio ar grŵp strategaeth Canolfan Ymchwil Canser Cymru—y strategaeth newydd. Felly, gyda llinell wedi’i dotio, rwy'n credu bod gen i gysylltiad gyda’r ganolfan ganser, dwi’n gweithio gyda’r arweinydd yna, Mererid. Dwi’n rhannol gyfrifol am y thema rhif 6 am ddata ar lefel y boblogaeth sydd wedyn yn mynd i weithio ar draws y themâu eraill, nid yn unig iechyd y cyhoedd ac atal canser.
Yes, thank you very much. That's a very fair question. I believe it's important that data is available to researchers and also to clinicians in terms of the work to improve cancer outputs. That's possible to an extent. If researchers need to look at our data and it's part of an approved research project, it's possible to request our data, and we need to see the permissions that they have to do that. Again, we have quite a small team, and it takes too much time, and I’m not happy about that, but I have to work within my funding, unfortunately. So we are taking out the information that they want about whatever cancer, such as the genetics we were mentioning earlier. That’s possible if they do have permission.
Also, every year we give them the new register into the SAIL databank in Swansea University, and that is where I am an honorary chair. I hear complaints about that from some researchers, and I believe that a lot of that is due to a misunderstanding about the way that it works. That’s a huge pool that can connect the cancer information safely and anonymously with all other NHS data that it includes, and also data about the environment, et cetera. So it may be a matter of awareness in terms of what’s available and what’s possible with that.
I’m working on a Wales Cancer Research Centre strategy group—the new strategy. So, with a dotted line, I think I have a connection with the cancer centre, I work with the leader there, Mererid. I’m partially responsible for the sixth theme there on the population-level data that’s then going to work across all other themes, not only public health and cancer avoidance.
Thank you very much. That brings me on nicely to my next question, which is for Digital Health and Care Wales, so, Helen. Cancer survival estimates are the estimation of the proportion of patients surviving their cancer after one, five or 10 years, how comparable and reliable is the data between population groups over time and across all of the UK nations?
A big question. Thank you. I actually haven't got all of that information in front of me, but in terms of the sources of the data, survival rate data will use the incidence data to identify the cancer data, and then the detail of it to detail it by cancer tumour site and of course by provider, by residency, and all of those things that we would subdivide the data by. And then the mortality data is sourced from the Office for National Statistics, so I would expect the data itself, actually, the quality of the data, to be comparable. If you're asking about actually the performance and the outcomes, I'm not sure that that's something I can comment on as it stands. I haven't got the data in front of me.
Okay, thank you. That might be something that we can follow up in writing afterwards. Are you able to talk about the geographic pattern of cancer survival across Wales, then? Are there differences in cancer survival by health board?
I think that's probably a question more for Dyfed than for me, I think.
Dyfed, I'll bring you in if you want to comment on either of those questions.
Ie, mae hwnna'n ddigon teg, Helen. Dwi'n hapus i gymryd hwnna. Felly, mae'ch cwestiwn yn sôn am ddyletswyddau statudol, a dweud y gwir, a dyna'n union beth yw ein rôl ni—beth oeddech chi wedi gofyn i Helen. Er bod mynychder canser a'r cyfradd marwolaeth yn gymharol rhwng gwledydd Prydain oherwydd y cofrestrfeydd a'r rheolau rhyngwladol y gwnes i sôn amdanyn nhw, dyw'r wybodaeth flynyddol am oroesi canser ddim yn union gymharol eto. Beth sydd wedi digwydd yw, mae'r dull ystadegol gan ystadegwyr yn yr Alban a Gogledd Iwerddon a Lloegr a ni wedi gwasgaru ychydig bach, felly dŷch chi ddim cweit yn gallu eu cymharu nhw, er bod y data sydd o dano fe yn gymharol. Felly, mae'r Gymdeithas Gofrestrfeydd Ganser Prydain ac Iwerddon—dwi'n gyd-gadeirydd o hwnnw—wedi tasgio'r ymchwilwyr a'r dadansoddwyr i gysoni'r ffordd maen nhw'n gwneud hwnna fel bod nhw'n gymharol. Wedi dweud hynna, mae tua tair rhaglen ymchwil rhyngwladol rydyn ni'n rhan ohonyn nhw yn mynd â data sawl gwlad, fel gwnes i awgrymu gynnau, ac yn ei ddadansoddi yn yr un ffordd.
Mae canser yr ofari yn rhan o'r grŵp o ganserau yn yr ICBP, yr international cancer benchmarking partnership, er enghraifft. Hwnna yw'r un sydd ar flaen y gad ar hyn o bryd. Y wybodaeth ddiwethaf o'r degawd diwethaf am hynny oedd, yn anffodus, o ran goroesi canser, roedd gwledydd y Deyrnas Unedig yn dod bron yn olaf ynglŷn â goroesi canser yr ofari. O fewn y rheini, Gogledd Iwerddon a Chymru oedd yr isaf hefyd, a hynny ar ôl gwella tipyn o ddechrau'r ymchwil—dechrau'r degawd i tua chanol y degawd—felly mae'n bell i fynd. Doedd y canserau gynaecolegol eraill—y prif rai, sef y groth a cheg y groth—ddim yn rhan o'r ymchwil penodol yna.
Beth fedrai ei ddweud hefyd yw, dros amser, mae'n hystadegau cartref ni yng Nghymru yn dangos er bod cyfraddau goroesi canser y groth wedi bod yn gwella cryn dipyn hyd at ganol y degawd diwethaf, ers hynny, tua hynny, mae e wedi mynd yn fflat—does yna ddim gwellhad yn y goroesi wedi bod. A dweud y gwir, mae goroesi o ganser y groth, yn anffodus iawn, wedi bod yn gwaethygu yn y degawd diwethaf, tan yn ddiweddar. Mae rhan o'r ymchwil rhyngwladol hefyd wedi bod yn edrych ar y rhesymau am hynny.
Yes, that's fair enough, Helen. I'm very happy to take that. So, your question mentions the statutory responsibilities and that's exactly what our role is—what you were asking Helen. Although the incidence of cancer and the death rate is relatively similar between UK countries due to the national registries that I mentioned, the annual information about survival rates isn't exactly possible to compare yet. What's happened is that the method that statisticians use in Scotland, Northern Ireland, England and us has spread slightly, so you can't really compare them, although the underlying data is comparable. So, the United Kingdom and Ireland Association of Cancer Registries—I'm also a chair of that—has tasked researchers and analysts to make that more streamlined so that they can be compared. Having said that, around three international programmes that we're a part of take the data from several countries, as I mentioned earlier, and analyse it in a similar way.
Ovarian cancer is part of a group of cancers in the ICBP, the international cancer benchmarking partnership, for example. That's the one that's at the forefront at the moment. The latest information from the last decade on that was that, unfortunately, in terms of survival rates, the UK countries were almost last in terms of ovarian cancer survival rates. Within that, Northern Ireland and Wales were the lowest also, and that was after a lot of improvement from when we started to gather this data—from the beginning of the decade to around the middle of the decade—so, there's a way to go. So, the other gynaecological cancers—the main ones, such as cancer of the uterus and cervical cancer—weren't part of this particular research data.
But, what I can say is that over some years now, our statistics have shown that, although survival rates for cancer of the uterus have improved, since then, they have flatlined—there has been no improvement in survival rates since then. To be honest, the survival rates for cancer of the uterus have, unfortunately, been worsening in the past decade, until very recently. Part of the international research has also looked at the reasons for that.
Thank you, Dyfed.
Thank you very much for that, again. That brings me on to my final question: why isn't the data you collate and publish on gynaecological cancers disaggregated by each type—so, cervical, ovarian, endometrial, vulval and vaginal cancers? Can this be done? If so, will you commit to doing it, given how important the information is for service and capacity planning?
Who's answering? Is that to Helen?
That is to Helen, yes.
Okay, and Dyfed may want to come in on this. The Wales Cancer Network, as I understand it, are actually introducing a sub-site, and we're working with them to issue the data standard for that so that it can break down to the cancers that you said—so, all of those. That will be happening this year; I don't have the date for it, but all of the plans are in place. What we would do then is make sure that all of our systems are updated, reflecting the data standard, so that that can be collected routinely as part of the cancer pathway information.
That is very positive news, thank you very much.
Did you want to add, briefly, to that, Dyfed?
Os caf i ychwanegu, yn gryno, ie, dwi'n ymwybodol o'r cwestiwn yma a dwi'n credu efallai bod yna gamddealltwriaeth ynglŷn â'r wybodaeth canser—am beth yw hyn. Felly, mae ein gwybodaeth canser—y gofrestr am y boblogaeth, sef yr un o ansawdd safonol—yn cael ei chyhoeddi yn ôl ceg y groth, yr ofari a'r groth ei hun. Fel y dywedais i, mae'r wybodaeth gennym ni am y canserau mwyaf prin ac rydym ni'n gallu mynd lawr i wahanol fathau, o geg y groth, y groth ac yn y blaen. Felly, rydyn ni'n gwneud hynna bob blwyddyn.
Dwi'n meddwl, efallai, fod y cwestiwn ynglŷn â'r wybodaeth oedd y delivery unit—onid e, Helen—yn ei wneud cyn iddyn nhw fynd i mewn i weithgor yr NHS yn ddiweddar, ble roedden nhw'n sôn am, dwi'n meddwl, nifer y cleifion ar y suspected cancer pathway ac yn y blaen, ac efallai mai dyna ble oedd y cwestiwn. Er enghraifft, roedden nhw'n cyhoeddi'r wybodaeth ynglŷn â gwahanol adrannau'r gwasanaeth—er enghraifft, canserau gynaecolegol neu ganserau wrolegol—achos yr un meddygon a'r un adrannau y mae'r rheini'n dueddol o fod ynddyn nhw yn yr ysbytai. Felly, dwi'n credu yr oedd y pwrpas yn wahanol ar gyfer sut oedd y gwasanaeth yn rhedeg. Dwi'n meddwl mai dyna beth oedd e, ond o ran fy nhîm i, rydyn ni'n gwneud beth rydych chi'n ei ofyn yn barod.
If I may add, briefly, yes, I am aware of this question. I think, perhaps, there's a misunderstanding regarding cancer information on this, so the cancer information register for the population is one of quality and is published according to cervical cancer, ovarian cancer and so on. As I said, we have the information for rarer cancers, and we can delve deeper into different types of cancer—cervical cancer and so forth. We do that on an annual basis.
I think, perhaps, the question was with regard to the information that the delivery unit—I think, Helen—produced before they went into the NHS executive recently, where they were talking about the number of patients on the suspected cancer pathway and so forth, and perhaps that's where the question stems from. For example, they published information regarding different departments of service—for example, gynaecological cancers and urological cancers—because they were the same departments in hospitals, and, therefore, I think the purpose was different for how the service was being run. I think that's what it was, but in terms of my team, we are doing what you're asking for already.
Okay, I'm going to hand back there. Thank you very much, both of you. I'm going to hand back there, though, Chair, because I think that, again, I'm pre-empting questions that are to come in the next section with one of my colleagues, who will drill down into that a little bit more, so thank you very much, Chair.
Thank you, Sarah. Mabon ap Gwynfor.
Diolch yn fawr iawn, Gadeirydd, a diolch i chi am ymuno â ni y bore yma. A gaf i jest holi—? Mae gen i set o gwestiynau rwyf eisiau mynd ar ei hôl, ond yn fuan ac yn gryno, Dyfed, roeddech chi'n sôn yn y fan yna, rŵan, fod yr ystadegau ynghylch goroesi canser yr ofari ymhlith y gwaethaf, rwy'n meddwl, ddywedoch chi, yng Nghymru a Gogledd Iwerddon, ac mewn gwirionedd, roeddech chi'n sôn am ganser y groth fel cyflwr sydd wedi gwaethygu, a ddaru chi rhoi hint bach ar y diwedd fod yna resymau pam. Beth ydy'r rhesymau yna, hyd y gwyddoch chi? Ac ydy'r data dŷn ni'n ei gasglu, felly, yn medru rhoi'r darlun cywir o pam ein bod ni'n cyrraedd y pwynt yna? Ac, felly, ydyn ni'n casglu'r data cywir er mwyn adnabod y rhesymau pam ein bod ni yn y sefyllfa yma?
Thank you very much, Chair, and thank you for joining us this morning. Can I just ask—? I have a set of questions that I want to ask, but very briefly, Dyfed, you mentioned there the statistics and the survival rates for ovarian cancer, and how they're among the worst in Wales and in Northern Ireland, and you were also mentioning cervical cancer and how that has worsened, and you gave us a little hint at the end that there are reasons why. What are those reasons, to your knowledge? And has the data, therefore, been collected to give us a clear picture about why we've reached this point? And then, are we getting the correct data to understand why we're in that situation?
Mae'r wybodaeth yn dod o'r ymchwil rhyngwladol, yr ICBP, ac, a dweud y gwir, maen nhw'n gyffredin gyda mathau eraill o ganser. Gwnaf i ddim mynd i mewn i'r ffigurau'n fanwl nawr, ond, yn y bôn, mae yna duedd yng Nghymru i ganserau gael eu diagnosio'n hwyr ac mae yna amryw o resymau am hynny. Hefyd, mae yna duedd i ganserau gael eu diagnosio mewn adrannau brys, naill ai'n cael eu anfon i mewn mewn argyfwng gan y meddyg teulu neu'n ymddangos yn yr adran frys yn yr ysbytai. Hyd yn oed os ydyn nhw'n ymddangos—. Mae yna duedd, felly, hefyd, i fod yn hwyr, ond hyd yn oed ar gam cynnar mewn diagnosis, os ŷch chi'n troi i fyny mewn argyfwng brys mae'r goroesi yn waeth. Wedyn, dyna'n gryno yw'r rhesymau. Mae yna fwy o fanylion, rydyn ni'n deall, ond dyna'r rhesymau.
The information comes from international research, the ICBP, and, really, they're common with other types of cancer. I won't go into the figures in detail now, but, essentially, there is a trend in Wales for cancers to be diagnosed late and there are a number of reasons for that. Also, there is a tendency for cancers to be diagnosed in emergency departments, either being sent in as an emergency by the GP or presenting in A&E. There is also a tendency to be late, but even at an early stage in diagnosis, if you turn up in A&E, the survival rate is worse. Therefore, those, briefly, are the reasons. There are more details, we understand, but those are the reasons.
Diolch. Ac, felly i fynd at y pwynt olaf yna yn y cwestiwn olaf, ydy'r data dŷn ni'n ei gael felly yn rhoi'r darlun cywir i ni o hynny a'r rhesymau pam? Ynteu, a oes yna fathau eraill o ddata neu fwy o wybodaeth sydd angen inni gasglu er mwyn rhoi darlun gwell a chliriach i ni o gwbl ynghylch hyn?
Thank you. And, so, to follow up that last point, is the data therefore giving us a clear picture of that and the reasons why? Or are there other types of data or more information that we need to collect in order to give us a better and clearer picture of this?
I fod yn onest, dwi'n meddwl ein bod ni'n gwybod beth i'w wneud. Gallaf esbonio rhai o'r manylion, os ŷch chi eisiau, am, efallai, pam fod y safon diagnosis yn dueddol o fod yn hwyr. Mae sawl modiwl yn yr ICBP wedi edrych ar hynna ar draws y canserau. Mae dealltwriaeth am symptomau yn broblem yn y boblogaeth. Mae yna ryw draddodiad—. Efallai bod rhai ohonon ni'n cofio ein rhieni, neu neiniau a theidiau, mam-gu a thad-cu, ddim eisiau ffwdanu'r meddyg. Mae'r agwedd yna yn fwy yng Nghymru na rhai o'r gwledydd eraill. Yn ogystal, does dim eisiau i fi ddweud pa mor anodd yw e i weld y meddyg teulu, hyd yn oed os ydych chi eisiau. Mae'r gwasanaeth ar ei liniau, wrth gwrs, am amryw reswm. Ac, wedyn, os ŷch chi yn gweld y meddyg teulu, mae'n anodd iddyn nhw, gyda chi wedyn, i gael profion diagnostig ac i weld yr arbenigwr. Dim bai'r meddygon na'r gweithwyr caled yn y system yw hwnna; mae yn broblem rŷn ni i gyd yn gwybod amdani. A hefyd, os edrychwch chi wybodaeth yr Organisation for Economic Co-operation and Development, mae nifer y meddygon, nifer y teclynnau diagnosis, er enghraifft, sganwyr, gwelyau ac arbenigwyr, ymysg yr isaf.
To be honest, I think we know what to do. I can explain some of the detail, if you like, regarding why the standard of diagnosis tends to be late. There are a number of modules in the ICBP that have looked at that across the cancers. The understanding of symptoms is a problem in the population. There's a tradition—. Perhaps some of us remember our parents, or our grandparents, not wanting to trouble the doctor. That attitude is more prevalent in Wales than in the other nations. I also don't have to say how difficult it is to see the GP, even if you want to. The NHS is on its knees for a number of reasons. And, then, if you do see the GP, it's difficult for them, then, with you to access diagnostic tests and to see specialists. We're not to blame the doctors for that, but it's a problem in the system, which we all know. And, if you look at the Organisation for Economic Co-operation and Development information, the number of doctors, diagnostic tools, scanners, for example, beds and specialists—those figures—we're amongst the lowest.
Mabon, Joyce wanted to come in. Do you mind Joyce coming in now? Yes. And then I'll come back to you. Joyce.
Good morning. I just want to ask: is all data collected equally on cancer? I'm just trying to get underneath why there's—. You said that, for ovarian cancer, if I heard you right—the latest report was 2020—that you'd fallen behind. That's obviously the case. What I'm trying to get underneath here is whether there is a gender bias in collecting cancer data. Is it all equally collected?
Ydy. Mae e wedi cael ei gasglu yn hafal ac yn gyfartal. Does dim rheswm yn y system bod gwahaniaeth. Er enghraifft, os dŷn ni'n cael lawrlwythiant misol o ddata amrwd o wasanaeth Helen, mae pob canser yna: y rhai sy'n effeithio menywod a dynion—aml rhywedd—a rhai sy'n effeithio dynion yn unig neu fenywod. Does yna ddim gwahaniaeth.
Yes. It is collected on an equal basis. There is no reason in the system that there is a difference. For example, if we have a monthly download of raw data from Helen's service, every cancer is there: those affecting men and women and those that affect men only or women. There is no difference.
Just before I come back to Mabon, I'm just conscious we're halfway through the meeting, but we haven't got halfway through the questions that we've got. So, I hate to ask this because, of course, we want as much detail as possible, but just bear that in mind. Mabon.
Diolch. Felly, gwnaf i ofyn y cwestiwn yma yn uniongyrchol i Helen, os caf i: pam mae o wedi cymryd cyhyd i weithredu'r system gwybodaeth rhwydweithiau canser newydd a phryd bydd y broses o’i gyflwyno'n cael ei gwblhau ledled Cymru? Pa sicrwydd allwch chi ei roi i ni yma na fydd mwy o oedi yn y broses yma?
Thank you. So, I will ask this question directly to Helen, if I may: why has it taken so long to implement the new cancer networks informatics system and when will the roll-out be complete across Wales? What assurances can you give us that there will be no more delays in this process?
Thank you. We've had a three-year programme. So, the programme was set up in 2019. We had a slight pause on the programme on the onset of the pandemic, but then, I think it must have been in between the first and second waves, we actually accelerated the cancer programme and made sure that that was a priority for us and for colleagues across Wales and particularly Velindre cancer centre. So, we successfully replaced the functionality that Velindre cancer centre were using in November 2022. That's been replaced with functionality developed and expanded on in our Welsh patient administration system. That manages pathways and, particularly, has been enhanced to manage the detailed information you want to track in a cancer pathway, and also upgraded our Welsh clinical portal, which is the clinician view of patient records, so that patient-centric view. That's been updated to record more of the clinical information along the pathway. Also, between the two systems, we've upgraded them to develop the multidisciplinary team meeting, so to manage the process of the discussions that are happening at MDT and then to collect all of the data that's needed then. There's quite a lot of data that is needed to be collected at those points. So, that functionality is available now. Two of the MDTs have gone live with that across Wales—so, that was breast and urology—the rest are being worked through in terms of the roll-out, because there's quite significant service change. Apologies. Sorry, we've got sensors on the lights. [Laughter.] Yes, looking after the pennies. There's quite significant service change within the local organisations, and, actually, the cancer teams want to do that as one across Wales. So, that roll-out is happening now throughout the next months.
There are improvements, and we've been continuing improvements with the Velindre cancer centre, which was a really successful implementation, considering that CaNISC had been their home-grown system for 20, possibly almost 30, years. So, it was in the DNA of all of their processing in the cancer centre, so that was a significant service change for the organisation, and it was, really, clinically and operationally led with all of the digital team supporting them, so really successful.
We've been continuing to work with them to improve, and then the other phases that we needed to work through—. That was phase 1. Phase 2 was the palliative care—so, how we support it, because cancer was supporting palliative care—so, we've got developments that are under way there now. Some are into testing, some further will be going into testing in September. And then we've got screening and colposcopy, which, I'll be honest, need quite a lot of work for us to do to take those things forward. But it's all being managed under the cancer programme.
We are working with the Welsh Government and the health boards in terms of the longevity of funding. We've got digital priority investment fund funding to support this until the end of March next year. There will be more work that we'll need to do, and, clearly, we will need sustainable funding in place, and we're working with the system on that, because the last thing I want is that we would have another CaNISC, where you have a system that's not being actively developed and becomes obsolete and unsupported. So, we are ensuring that we have the teams and the processes in place so that we can continue to grow and develop the system, to be honest, and listen to users and make sure that it can respond to their needs and it is useful and helps to support cancer pathways.
Diolch yn fawr iawn am hynny, Helen. O feddwl, felly, am y system newydd yma, mae'r Athro Tom Crosby wedi dweud wrth y pwyllgor yma fod yna gyfyngiadau sylweddol i'r system yna o ran cipio'r data am gleifion a thriniaethau. Mae wedi dweud nad yw'r data a oedd ar gael ar un adeg yn cael eu coladu bellach, hynny ydy, data’n ymwneud â llwybrau atgyfeirio ar gyfer diagnosis o ganser, cam y diagnosis ac ati. Allwch chi felly ein helpu ni i ddeall y rhesymau pam mae hyn wedi digwydd?
Thank you very much for that, Helen. Thinking, therefore, about this new system, Professor Tom Crosby told this committee that there are significant limitations to the new system in terms of the patient and treatment data being captured. He said that data that was once available is no longer collated, that is, data on the referral routes for cancer diagnosis, the stage of diagnosis et cetera. Can you help us to understand the reasons for this?
A lot of the data is collected as part of the cancer tracker that's in the PAS system, in terms of understanding those steps. I don't have the detail in terms of what Tom was relating to there, but I will definitely pick that up with him, to be honest, because, if there are major gaps, I would expect that the cancer informatics programme has picked those up and would be prioritising those. There has been quite a lot of developments to take forward and the underlying objective was to ensure that we had the modern cancer digital services to support the cancer pathways, but also we had a significant risk that we were managing with the cancer system itself, because it was running unsupported, as the committee will be aware from previous evidence that will have been given.
So, there were certain things that will have been prioritised, that were the must-dos, and so that we could actually move Velindre on to the new systems and services. If there are areas where we have gaps now that we didn't have before, that will have been worked through collectively through the programme, across the multidisciplinary teams, and they will be part of the—I would expect—priority development list that we see now going forward.
Roeddech chi'n dweud, wrth gychwyn yr ateb yna, o ran y wybodaeth roedd yr Athro Tom Crosby wedi'i dweud, doeddech chi ddim yn gwybod amdano a felly y byddech chi'n dod yn ôl ato fo ac yn trafod efo fo i weld. Tybed, drwy'r Gadair, os caf i ofyn yn garedig, pan fyddwch yn ffeindio'r wybodaeth, a wnewch chi ei yrru o ymlaen i'r pwyllgor, fel ei fod o'n bwydo i mewn i'n hymchwiliad ni yma, os gwelwch yn dda?
You mentioned, in starting that answer, about the information that Professor Tom Crosby has said, that you weren't aware of it and that you would go back and perhaps discuss with him to see. I wonder whether, having received that information, you could relay it to this committee so that we can feed it into our inquiry.
Yes, of course.
Diolch yn fawr. Ac yn olaf o fy rhan i, pa gyfleoedd mae'r system newydd yma yn eu cynnig i glinigwyr o ran darparu'r ddealltwriaeth maen nhw'n galw amdani, yn benodol data ar arosiadau cydrannau o fewn y llwybr canser gynaecolegol? Ydych chi'n cytuno bod y data hyn yn hanfodol er mwyn canfod lle mae pethau'n gwasgu ar y llwybr canser gynaecolegol?
Thank you very much. And finally from me, what opportunities does the new system provide for clinicians in terms of providing the intelligence they're calling for, specifically data on component waits within the gynaecological cancer pathway? Do you agree that this date is critical in order to identify pinch-points in the gynaecological cancer pathway?
Absolutely, and the data is collected via the cancer tracker in terms of all of those stages. I think what perhaps we need to ensure is that it's being displayed and available where and when clinicians need to see it. So, I think that, actually, the way that we've taken forward the development of the cancer systems in Wales means that we've got that opportunity to work with clinicians to provide those views of data, because the data is now part of the patient-centric record. I think we can visualise and we could look to visualise that data in a way that is more engaging and accessible to clinicians as they're undertaking consultations and seeing patients.
Lovely. Thanks, Mabon. Helen, when do you expect the roll-out of CaNISC to be completed?
We have funding until March 2024. I think that the colposcopy and screening will take us longer into 2024, 2025, and we will be continually improving. So, as an organisation, we want to move away from specific project and programme funding, and then you have a small revenue tail to maintain. That's not the way that we need to support digital systems in this day and age. We need to ensure that we've got skills and resources to continually develop the cancer system and cancer services, and that's what I'm working with colleagues across Wales on and with Welsh Government on to make sure that we are able to provide that service that clinicians and patients need.
Yes. Thank you, Helen. Just to give some indication, we've probably got about 10 minutes, Gareth, for your section and 10 minutes for your section, Joyce, or just under 10 minutes. So, Gareth Davies.
Diolch, Cadeirydd, a bore da, pawb—Dyfed a Helen hefyd. Cwestiwn i Dyfed y bore yma. Pryd fydd yr archwiliad canser cenedlaethol yn cael ei gynnal, ac a fydd y data’n cael eu dadgyfuno yn ôl y math o ganser gynaecolegol? Oherwydd, ar hyn o bryd, mae'n ymddangos bod gwybodaeth wedi'i grwpio gyda'i gilydd, yn hytrach nag yn unigol.
Thank you, Chair, and good morning, all—Dyfed and Helen also. This is a question to Dyfed this morning. When will the national cancer diagnosis audit take place, and will the data be disaggregated by type of gynaecological cancer? Because, currently, it appears that information has been grouped together, rather than individually.
Dwi'n deall y cwestiwn. Dwi'n credu bod hyn yn mynd nôl i’r pwynt blaenorol, cwestiwn yn gynt, ble dwi'n credu efallai fod yna gamddealltwriaeth wedi bod ynglŷn â’r math o wybodaeth y mae fy nhîm i yn ei chyhoeddi bob blwyddyn, sy’n statudol, ar sail y cofrestr canser o bob achos, lle rydyn ni'n cyhoeddi hwnna wedi’i dorri i lawr yn epidemiolegol, a wedyn lle dwi'n meddwl mae'r cwestiwn, ynglŷn â'r gwasanaethau, hynny yw, y rhestrau aros gynaecolegol, y rhestrau aros wrolegol, y rhestrau aros am yr ysgyfaint, ac mae hynna mwy i'w wneud gyda data am y gwasanaeth, yn hytrach nag achosion canser. Fel y dywedais i, o beth roeddwn i'n ei gofio, y delivery unit oedd yn gwneud hynny, a dwi ddim yn siŵr beth sy'n digwydd gyda hynna nawr eu bod nhw wedi mynd i mewn i'r gweithgor.
I understand the question. I think this goes back to the previous point, an earlier question, where I think perhaps there's been a misunderstanding about the kind of information that my team publishes on an annual basis, which is statutory, on the basis of the cancer register of all cases, where we do publish that broken down epidemiologically, and then where I think the question is, regarding the services, that is, the waiting lists for lung cancer, gynaecological cancer, urological cancer, and that relates more to data about the service, rather than cancer cases. As I said, from what I remember, the delivery unit did that, and I'm not sure what's happening with that now that they're part of the executive.
Diolch. With looking at the data between the different types of cancers, and especially between genders—and we look at gynaecological cancers in women and then, for example, we look at prostate and testicular cancers in men in particular as well—are there any notable gender differences in patients' experiences and does the data necessarily reflect that fact?
Even though we hold the data—
—ar gyfer yr arolwg profiad canser, y cancer patient experience survey, doedden ni ddim yn rhan o'i ddadansoddi a gweithredu ar ei ddarganfyddiadau. Macmillan a'r Llywodraeth sydd piau'r data, felly, fedraf i ddim—
—for the cancer patient experience survey, we weren't part of analysing it or implementing its recommendations. Macmillan and the Government own that data—
Dyfed, sorry to interrupt you, there's a slight technical issue with the translation, so I'm just going to ask you to pause for a moment and ask the translation if they can undertake a test. [TRANSLATION: Testing interpretation. This is the interpreter speaking.] I can hear that. There we are. Lovely, thank you. Sorry for the interruption, Dyfed.
Mae'r arolwg profiad cleifion canser, mae'r data'n cael ei ddal gyda ni. Does dim yr adnoddau gyda ni i'w ddadansoddi ymhellach ond, bob tro mae'n cael ei wneud, mae Macmillan a'r Llywodraeth yn ariannu cwmni i'w ddadansoddi a chyhoeddi adroddiad. Felly, allaf i ddim cofio manylion hwnna, os dwi'n onest—dim ein rôl ni yw hynna—ond mae e ar gael. Ond fedraf i ddim ateb y cwestiwn; dydy e ddim yn rhan o fy nhîm.
The cancer patient experience survey, the data is held by us. We don't have the resources to analyse it further, but every time it is done, Macmillan and the Government fund a company to analyse it and publish a report. So, I can't remember the details of that, to be honest—that's not our role—but it is available. But I can't answer the question; it's not part of my team's work.
Thanks. I'll just bring my questions back up. But, looking in terms of equity, obviously, we saw an article on 21 June on the BBC that a black man wasn't included in some of that cancer data. Looking into that equity strategy for improving that uptake, do you work with the screening division on that issue and what can we do better to make sure that everybody is included in the stats?
Mae hyn yn anhygoel o bwysig. Mae modd recordio gwybodaeth am gydraddoldeb ym mas data cofrestrfa canser Cymru, ond dŷn ni'n dibynnu wedyn ar beth sydd yn y data amrwd. Dwi'n gwybod bod yna grŵp gweithredu gan y Llywodraeth yn edrych i mewn i wybodaeth anghydraddoldebau, felly bydd hynna'n ein helpu ni, a'n bwriad ydy cyhoeddi'r ffigurau yn ôl gwahanol fathau o anghydraddoldeb. So, rydyn ni'n edrych ymlaen at gael mynediad at y cyfrifiad 2021. Ar hyn o bryd, rydyn ni ond yn gallu dangos anghydraddoldebau yn ôl rhyw, oedran ac amddifadedd ardal, nid yn ôl yr unigolyn. Ac fe fyddwn ni efallai—yn SAIL yn Abertawe neu rydyn ni'n siarad gyda ONS—yn medru lincio data'r gofrestr i unigolion, yn gudd ac yn gyfrinachol, wrth gwrs, a bydd hwnna'n gweddnewid ein gallu i wneud hynna.
This is incredibly important. There is a way to record information about equality in the Wales cancer registry database, but we then depend on what's in the raw data. I know that there is an implementation group within the Government that's looking into information about inequalities, so that will help us, and our intention is to publish the figures according to the different types of inequalities. So, we are looking forward to getting access to the 2021 census. At the moment, we can only really show inequalities according to gender, age and deprived areas, rather than according to the individual. And we may be able—with SAIL in Swansea or we're talking to the ONS—to link the data in the register to individuals, anonymously and confidentially, of course, and that will transform our ability to do that.
Thanks. And just finally, if I may, we've heard a lot in evidence in previous sessions about the fact that women are being diagnosed with late-stage gynaecological cancers after being admitted to hospital after a visit to A&E. What scope is there for A&E data to be shared with you, to better understand what action is needed, and with a view to trying to capture these stages of cancer in their earlier forms, so that we can prevent some of these things happening in the future?
Mae'r data yna ar gael inni yn barod, a dyna sut rŷn ni'n gwybod bod yna ormodedd o fenywod yn cael eu diagnosio yn hwyr a thrwy adrannau argyfwng. Y cwestiwn yw, 'Beth ydyn ni'n gwneud am hynna?' dwi'n meddwl, ac mae hwnna yn rhywbeth—. Dwi'n sicrhau nad yw ein gwybodaeth ddim yn unig yn ymddangos ar ein gwefan—mae e'n gyhoeddus, ond does neb yn gwybod—ond dwi'n cyhoeddi'r peth, yn mynd ar y cyfryngau, a dwi'n gwneud yn siŵr bod y rhwydwaith canser, y gwahanol grwpiau a'r Llywodraeth yn ymwybodol ohono fe, ac, wrth gwrs, yn cydweithio ynglŷn â beth mae'r rhwydwaith canser a'r Llywodraeth wedyn yn mynd i'w wneud amdano fe. Wrth gwrs, dyw hwnna ddim yn fy sgôp i, ond i wneud yn siŵr bod y wybodaeth iawn yn mynd i'r bobl iawn.
That data is available to us already, and that's how we know that there are too many women being diagnosed late and through emergency departments. The question is, 'What do we do about that?', I think, and that's something—. I make sure that our information not only appears on our website— it's public, but nobody knows that—but I also publicise it. I go to the media and I make sure that the cancer network, the different parts of the Government, are aware of it, and we work collaboratively on what the cancer network and the Government are then going to do about it. That, of course, isn't within my scope, but it is to ensure that the right information goes to the right people.
Diolch.
Thank you.
Thank you, Gareth. Joyce Watson.
That brings me neatly on, as a question, to the Wales Cancer Intelligence and Surveillance Unit, because your paper does say that that evaluation of the 2016 lung cancer system and awareness campaign did involve—and that's great news—some of the work that you'd done. So, could you do the same again with gynaecological cancer awareness raising?
Felly, ar y pryd, roedd yna wahanol—. Wel, mae hwnna'n reit hen nawr. Ar y pryd, roedd yna wahanol grwpiau NHS yn gyfrifol am hynny—y cancer national specialist advisory group, dwi'n meddwl, a'r ddau rwydwaith canser ar y pryd. Nhw wnaeth rhedeg y rhaglen ymwybyddiaeth am symptomau canser yr ysgyfaint, felly fy rôl i oedd dim ond gwerthuso hynna drwy'r gwahanol ddata sydd gennym ni. Dwi ddim yn medru gwneud hynna o ddydd i ddydd oherwydd fy nghyllid craidd, ond fe gawsom ni ymchwilydd wedi'i ariannu ar wahân i wneud hwnna'n benodol, ac wedyn mae hynna'n ein galluogi ni i wneud mwy yn achlysurol i ateb cwestiynau penodol. So, ie, i ateb y cwestiwn, fe fedren ni wneud hynna, ond dwi ddim yn credu mai ein rôl ni yw rhedeg rhaglen ymwybyddiaeth symptomau canserau gynaecolegol, ond mi fedren ni gydweithio ar ei werthuso fe.
Therefore, at the time, there were different—. Well, that is old now. At the time, there were different NHS groups responsible for that—the cancer national specialist advisory group, I think, and the two cancer networks at the time. They ran the awareness programme for lung cancer symptoms, so my role was just to evaluate that through the different data that we have available. I can't do that on a day-to-day basis because of my core funding, but we had a researcher funded separately to do that specifically, and that enables us then to do more occasionally to answer specific questions. So, to answer your question, yes, we could do that, but I don't think that our role is to run an awareness campaign for gynaecological cancer symptoms, but we could collaborate on evaluating it.
You could. The Royal College of Pathologists say digital technology, particularly digital pathology, can eliminate the need for transportation of specimens, or prepared slides, and it just helps streamline the process and reduce the time taken to diagnose, I suppose. What action is being taken to help support the pathology units, and if there is action, how long will that take, and if there's more that needs to be done, what is it?
I can see Helen wants to come in as well. Shall I bring Helen in first? Helen.
Diolch, Helen.
Thank you, Helen.
That's okay. The national pathology board has been developing a business case for digital cellular pathology in Wales. That has been discussed with Welsh Government. My organisation has a copy of that. It's been done as part of the national pathology board, which was part of the NHS collaborative and is now part of the NHS executive. So, we will work with that team to take forward the outlines of the business case, to funding and then to establishing the programme to take this forward. It is very much seen as an area of priority that is going to help, clearly, pathways right across the board in terms of reducing the time to diagnosis and improving the efficiencies of the pathology pathway. So, it is definitely on the agenda at the moment, but I haven't got any more timelines than that, I'm afraid.
Dyfed.
Os caf i ategu, mae data newydd fel hyn yn help mawr inni wedyn i greu'r gofrestr. Mae peth data patholegol wedi digideiddio yn barod, ac mae hwnna'n un o'n prif ffynonellau i gofrestru canser. Hyd yn oed pe byddai gen i ddwywaith y tîm—ac fe hoffwn i hynny—byddem ni yn medru cyflymu cyhoeddi'r gofrestr, ond fe fyddai yna'n dal ychydig o oedi. Felly, mewn ymateb i'r pandemig, i wybod beth oedd yn digwydd gyda diagnosis canser, fe wnaethon ni ddefnyddio'r ffynhonnell ddigidol o ddata patholeg fel rhyw fath o faen prawf, yn fisol, o beth oedd yn digwydd i ddiagnosis canser yn y blynyddoedd diwethaf. Rŷn ni wedi cyhoeddi hwnna, ac efallai fod eisiau gwneud ychydig bach mwy o gyhoeddusrwydd ynglŷn â fe hefyd, ac rŷn ni am barhau i wneud hynna. Er enghraifft, dwi'n credu, ar 6 Medi, rŷn ni'n mynd i gyhoeddi'r rheini fel ystadegau arbrofol, ac maen nhw fesul mis, a byddwn ni'n gallu mynd fyny, erbyn mis Medi efallai, i'r mis yma—Mehefin 2023—ynglŷn â diagnosis canser ar lefel y boblogaeth.
If I could add, new data such as this is a great help for us then to draw up the register. Some pathological data has been digitised already, and that is one of our main sources to register cancers. If I had twice the number of members in my team—and I'd like that—we would be able to proceed quickly with publishing the register, but there would still be some delay. So, in response to the pandemic, to know what was happening with cancer diagnosis, we did use the digital source of pathology data that as a kind of benchmark, monthly, to see what was happening with cancer diagnosis in the last few years. We have published that, and perhaps we need a little bit more publicity around that, and we're going to continue doing that. For example, I think, on 6 September, we're going to publish those as experimental statistics, and they're on a month-by-month basis, and perhaps, by September, we'll be able to go up to this month, June 2023, on cancer diagnosis on a population level.
Okay. Thank you. There's been a lot of talk about artificial intelligence. Would it be useful? There have been pros and cons—we've seen them—with people walking away from it. But do you think there's a place for AI in improving the understanding and access to diagnostics and treatment in this area?
Helen, wyt ti eisiau mynd yn gyntaf?
Helen, do you want to go first?
Yes, great. 'Yes' is the answer in that space. There are significant opportunities. The priorities, as we see them, have been to ensure that we are capturing all of the data and supporting the pathways and pathway management. When you've got that data, then you can build and train the models that will help you to target and use that data more efficiently and effectively, in a way that perhaps we wouldn't have been able to without the onset of AI. So, I think there are tremendous opportunities in this space for us.
There is work under way to think about what AI looks like across NHS Wales, if you like, and what we would need to have in place to ensure that we could really prosecute the opportunities that we've got with AI, because there's a lot that you need to consider, and some of the work that you as a committee will do will be kind of working through that, won't it, in terms of equity and ethics in terms of this. You've got to be sure that you've got all of the right data sets in place to ensure that that is effective in terms of its application. But, yes, there are tremendous opportunities in that space.
And finally from me, to the Wales Cancer Intelligence and Surveillance Unit, can you briefly outline the role the unit has in cancer genome data research, particularly in preventing, and treating women with, gynaecological cancers, because we know, very often, there is a genetic link to some of those?
Y cam cyntaf ydy casglu'r data, a'r ail gam, wedyn, yw defnyddio hwnna gydag ymchwilwyr sydd wedi eu hariannu i ateb y cwestiynau mae menywod, y rheini sy'n penderfynu ar bolisi, a gweithwyr yr NHS angen eu hateb. Mi wnes i sôn gynnau ein bod ni'n cydweithio gyda'r gofrestr yn Lloegr, a dweud y gwir, a'r gwasanaeth geneteg yng Nghymru, i gasglu'r data yma sydd yn cael ei ddarganfod drwy ddiagnosis gwahanol ganserau, a bydd hwnna'n cyfri gwybodaeth am ganserau'r ofari, er enghraifft, a phethau fel yr ysgyfaint, ac yn y blaen. Hefyd, mae yna brosiect paralel gyda ni gyda Lloegr, ble nid yn unig y byddwn ni'n casglu gwybodaeth enynnol am y tiwmor, am y canser ei hunan, y celloedd, ond am marker yn y corff ei hunan—fel roeddech chi'n dweud, y rheini sy'n rhedeg mewn teuluoedd—BRCA 1 a 2. Mae'n rhaid inni gael mwy o ganiatâd i gadw'r data yna gan wahanol awdurdodau, achos dyw e ddim yn ddata ar gleifion canser yn unig; mae gyda ni'r hawl gyfreithiol i gasglu data arnyn nhw ar hyn o bryd. Ond fe fyddwn ni'n gallu casglu'r statws BRCA ar gleifion sydd â chanser yr ofari, a'r fron, a'r coluddyn, a dweud y gwir, hefyd.
The first step is to collect that data, and the second step is to then use that with researchers who have been funded to answer the questions that women, those who are policy makers and those who work in the NHS need a response to. I mentioned earlier that we work collaboratively with the register in England, and the genetic service in Wales, in order to collect this data arising from the diagnosis of different cancers, and that will include information about ovarian cancer, for example, and things such as lung cancer. There is also a parallel project running, alongside England, where we're not only collecting genetic information about the tumour, the cancer itself and the cells, but also the marker within the body—those that run in families, as you mentioned—for example, BRCA 1 and 2. We need to get further permission to keep that data from different authorities, because it's not data on cancer patients only; we have the legal right to collect information on them at the moment. But we will be able to get that BRCA status of ovarian cancer patients, and for breast and bowel cancer patients too.
Thank you.
Thank you, Joyce. Just to give you a bit of advance notice of my last question, I wanted just to ask you both if there's anything else you think is useful to impart to us in our work that's not been drawn out through questions? I'll come to you in a moment, Helen, on that one. But, just a couple more questions for you, Dyfed. You've mentioned a couple of times in the session this morning resource issues, about sufficient resource to carry out the work that you might want to carry out. So, I suppose, in that regard, has there been a cut to your service or to staffing in your service at all in recent years?
Mae'r newidiadau wedi dod yn sgil y pandemig: staff wedi gadael, hyfforddi rhai newydd, oedd yn anodd ar y pryd. Roedd rhai o'r staff wedi cael eu tynnu i ddelio’n uniongyrchol gyda rheoli’r pandemig yn y gwasanaeth clefydau heintus. Felly, mae hynny wedi achosi problemau. Mi wnaeth rhai staff adael ar ôl hynny.
Mae'n rhaid bod yn ofalus, onid oes, achos mae yna bwysau ar adnoddau ar draws timau a'r gwasanaeth iechyd yn gyffredinol. Mae'n rhaid derbyn hynny, ac mae mater cyllido allan o fy ngafael i a dyw e ddim yn rhywbeth fedra i ei newid. Beth rŷn ni yn gwneud, rŷn ni'n reit dda yn cael arian prosiect i mewn—er enghraifft, gwerthuso ymgyrch canser yr ysgyfaint. Dwi'n dod o Geredigion yn wreiddiol a dwi'n gallu darganfod arian yn hawdd weithiau, o fan hyn a fan draw. Ond prosiectau yw’r rheini.
The changes have arisen as a result of the pandemic: staff left, and training new members of staff was difficult at the time. Some members of staff had been pulled to deal directly with managing the pandemic in the infectious diseases unit. So, that has created problems. Some members of staff left after that.
You have to be careful, don't you, because there is a pressure on resources across teams and the NHS in general. We have to accept that, and funding issues are out of my control and not something that I can change. What we are doing, and we're quite good at doing it, is attracting project funding—for example, for the evaluation of the lung cancer campaign. I'm from Ceredigion originally and I can find funding easily sometimes, from here and there. But those are projects.
Thank you, Dyfed. And, I suppose, an important question to you, Dyfed: how confident are you that cancer data that you do share with partners, and the Welsh Government especially, is actually leading to policy change or spending priority differences?
Dwi'n credu bod hynny'n fantais o ran maint ein gwlad ni yng Nghymru a sut rŷn ni'n gallu cwrdd â’r rheini sy'n gwneud penderfyniadau. Mae'r gweision sifil cywir yn troi i fyny yn yr un cyfarfodydd â ti a fi, Helen. Maen nhw'n clywed beth sydd gennym ni i'w ddweud, ac maen nhw wedi gweld y slides a'r wybodaeth, ac rŷn ni'n cydweithio efo’r rhwydwaith canser cenedlaethol ac maen nhw'n gyfrifol am gydlynu llawer o bethau. Felly, dau achos alla i feddwl amdanyn nhw ydy ein hystadegau rheolaidd a'r gwaith rhyngwladol. Fedraf i, llaw ar fy nghalon, ddweud bod hynny wedi dylanwadu ar flaenoriaethu'r problemau yng nghanser yr ysgyfaint yn ystod y degawd diwethaf ac mae yna beth awgrym bod hynny wedi gwella pethau, a dweud y gwir. Mae'r sefyllfa o ran canser yr ysgyfaint dipyn yn well nag oedd e.
Yn fwy diweddar, rŷn ni wedi dangos sut y dylai canser y coluddyn fod yn flaenoriaeth, ac mae e ar hyn o bryd. Dyna ydy ffocws y systemau nawr. Mae e’n ganser allai gael goroesedd da iawn ac, yn y tabl rhyngwladol, rydym ni'n rhywle ar waelod canol y domen. Felly, rŷn ni'n gwybod y medrwn ni gynyddu fanna. A dweud y gwir, dwi wedi llwyddo i gael arian drwy gydweithio gyda Moondance. Rŷn ni'n gweithio ar brosiect awdit canser y coluddyn gyda nhw, a'r system glinigol, i weld beth allwn ni ei wneud, gyda pheth o ddata Helen a'n data ni, i wella'r awdit yna a newid sut mae'r system yn gweithredu er mwyn i ni allu gwella goroesi.
I think that that's an advantage in terms of the size of our country in Wales and how we are able meet those who are decision makers. The right civil servants turn up in the same meetings as you and me, Helen. They hear what we have to say, and they've seen the slides and the information, and we work with the national cancer network and they're responsible for co-ordinating a number of things. So, two cases that I can think of specifically are our statistics and the international work. I can say, hand on heart, that that has influenced the priorities in terms of lung cancer in the past decade, and there's some suggestion that that has improved matters. The situation in terms of lung cancer is quite a bit better than it was.
More recently, we've shown how bowel cancer should be a priority, and it is at present. That's the focus of the systems at present. It's a cancer that could have good survival rates and, in the international table, we're somewhere towards the bottom of the middle of the pile. So, we know that we can improve on that. As a matter of fact, I've been successful in getting funding in collaboration with Moondance. We're working on a bowel cancer audit project with them, and the clinical system, in order to see what we can do, using some of the data that Helen and I have, in order to improve that audit and change the way that the system works so that we can improve the survival rates.
That's good to hear. Thank you, Dyfed. And, Helen, I'll just come to you for my last question I put to you earlier. Is there anything else that you want to impart to us that you think will help our work at all that's not been drawn out through questions today?
I think the generic issue around the capturing of the granular detail you want around people. Dyfed mentioned earlier a national group that's been set up, a Welsh Government group, and it's got a sub-group that's really focused on data around health inequalities. I remember 20 years ago being an information manager trying to introduce the new demographic data standard and the capture of ethnicity, and it's a challenge; it's a challenge out there operationally. I think that, where it is captured, it's probably only 40 per cent stated and 60 per cent not stated. So, it's nowhere near complete enough, if you like, in terms of being useful for what we need it for. I think that the work of that group is going to be really helpful, not just for ethnicity but about other protected characteristics in terms of having that granular data available.
I think the introduction now of the NHS Wales app, and as that becomes more accessible to people in Wales, they will have the ability to update their own information. So, I think that there will be far more of a co-produced, co-participant view, really, if you like, and patients will be able to kind of take ownership of their record and update that information so that it overcomes the operational difficulties that there are, or there appear to be, with collecting this data, and it is a challenge. But it might be worth noting that in your work.
That's very helpful to appreciate, the adaption and development of the Welsh NHS app. I can see it will impact things considerably, yes. Thank you, Helen. Dyfed, any last comment from you at all, or anything you believe that would help our work?
Well, we've covered a lot, haven't we?
Yr unig beth gallaf i ddweud, efallai, fel hysbysiad, yw, fel dywedais i, bydd gwybodaeth ar sail patholeg canser yn dod allan ym mis Medi. Rydyn ni hefyd yn gweithio ar wybodaeth edrych ymlaen, felly faint o ganserau, gan gyfri canserau benywaidd, fydd mewn 10 mlynedd, 20 mlynedd, 30 mlynedd, a rydyn ni'n plethu'r wybodaeth ynglŷn â ffactorau risg mewn i hynna. Er enghraifft, 'Mae'r gyfradd gorbwysedd yn hyn nawr; dyna beth fydd hynny'n golygu ynglŷn â chanser yr ofari, ond, petaem ni'n llwyddo i ddod â'r gyfradd orbwysedd i lawr, dyma fuasai fe'n gwneud mewn 10, 20, 30 mlynedd ar gyfer lefelau canser yr ofari a chanserau eraill sydd yn cael eu heffeithio'. Gallaf i ddim dweud wrthych chi pryd fydd hwnna'n barod, ond rydyn ni'n gweithio ar y prosiect yna.
The only thing I could say as, perhaps, an advertisement, is that information, as I said, on the pathology basis of cancer will come out in September. We're also working on information looking forward, so how many cancers, including female cancers, there are going to be in 10, 20 or 30 years. We're weaving information regarding risk into that. For example, 'The obesity rate is this now; that's what that will mean regarding ovarian cancer, but if we succeeded in bringing the obesity rate down, this is what it would do in 10, 20 or 30 years for ovarian cancer levels and other cancers, for example, that are affected'. I can't tell you when that will be ready, but we are working on that project.
That's interesting; that's helpful. Professor Dyfed and Helen Thomas, can I thank you both for your time with us this morning? It's been a really helpful and useful session. We'll send you a copy of the transcript, but if there's anything else you think you want to add to the evidence this morning, then please, of course, drop us a note on that. Thank you. I appreciate your time this morning; I appreciate you're both very busy people. Diolch yn fawr iawn.
Diolch yn fawr.
Thank you very much.
Croeso. Diolch.
You're welcome. Thank you.
With that, we'll take a 10-minute break. We'll be back just before 10:45.
Gohiriwyd y cyfarfod rhwng 10:33 a 10:45.
The meeting adjourned between 10:33 and 10:45.
Croeso, bawb. Welcome back to the Health and Social Care Committee. I move to item 3, and this is the eighth evidence session of the committee's inquiry into gynaecological cancers. In this session, we'll be hearing from representatives from Marie Curie. I'd be very grateful if you could just introduce yourselves for the public record, and your roles.
Thanks. I'm Natasha Wynne, I'm senior policy manager at Marie Curie Cymru.
Jo Hayes. I am a consultant in palliative medicine, working with Marie Curie and also Cardiff and Vale health board.
Lovely. Thanks ever so much for being with us today and for your advanced correspondence with us, as well. We've had some very powerful evidence to committee. I'm not sure whether you've had the chance to see some of our earlier sessions, but some were very emotional, I think, in terms of evidence provided to us in terms of women having a terminal gynaecological cancer diagnosis. But from our perspective, I suppose the question that perhaps sets the scene for this morning's session is is there sufficient community provision across Wales to ensure that women with a terminal gynaecological cancer diagnosis are supported to access palliative and end-of-life care. So, is that support sufficient is the question.
Are you happy for me to go first? First of all, I wanted to say thank you to the committee just for the opportunity to talk about palliative care as part of this. I can give a bit of the stats background, just to give some context of how many people this is affecting, before we think about whether community care is sufficient. We know about 450 women every year die from malignancies of female genital organs—
In Wales.
In Wales, yes. About half of those will be ovarian cancer and about three quarters of the 450 people will be people over 65. That's been quite stable, that number, over the past 10 years, but we are expecting the need for palliative care in Wales in general to increase a lot in the next 25 years, because the population is ageing, and we're expecting more deaths from dementia, but also from cancer. We're also expecting a shift from deaths in hospital to more deaths in the community, so at home and in care homes. It's important to understand the context that need is growing.
Where community care is now, we're in quite a good position in Wales with some of the data we have. DHCW, who I know you spoke to earlier, the value in health centre, part of the NHS collaborative, and some of our researchers at the Marie Curie palliative care research centre at Cardiff University have been putting together a last-year-of-life dashboard, which means we can look at, for anyone who's died in the last five years, all their interactions with the health service in their last year of life.
If we look at women with ovarian, cervical and uterine cancers, we can get some idea of how well community care is meeting their needs by looking at their interactions with unscheduled care. We pulled off the data from the dashboard for that group of patients for the last five years. You find, on average, they're having 13 interactions with unscheduled care in a year versus seven for the general end-of-life population. They're having eight emergency admissions in the last year of life, compared with four for the general last-year-of-life population, and they're spending 35 days in hospital after an emergency admission over the whole year, and again, that's higher than the general population.
So, it suggests something is going wrong with the community care available. Even though some emergency admissions will be appropriate, there seems to be something missing to support people to be cared for in the community. When you ask most people towards the end of life, they want to spend less time in hospital and more time in their usual place of residence, if that's possible.
I notice in your paper on that you said that women are less likely to want to die at home. Can you just perhaps expand on that a bit more?
This is based on some really early research that we've done, and really, there is more research needed in this area. My colleague Bethan Edwards at Marie Curie has led this really interesting project looking at the Marie Curie data in terms of preferred place of care and preferred place of death for people who used our services, and it looks like there is a little bit of a difference between the preferences of men and women.
We ran some focus groups to try and explore this. Again, this is quite small numbers of people—it really does need more research—but you hear women expressing concerns about being a burden. From healthcare professionals, we've heard concerns about whether men in a caring role are getting the support they need, whether they've been able to access it, or whether they're acknowledging that caring role. So, we've said that really, we'd like to see more of a gender lens applied to palliative care to make sure people are being given the service offer in a way that is going to meet the needs of their normal caring roles, or of their kind of expectations around whether they would be a carer or whether they would be a burden.
So, this is why, with the women and girls health plan at the moment, we think it's really important that palliative care is included in that, because we want a cradle-to-grave approach that really understands that quality of life doesn't stop just because you've got a terminal illness. We need to be thinking about it right until the end of life.
But as I say, this is quite early-days research, and really what we want to see is more research on that, so that the offer to people recognises differences that might be associated with gender or other characteristics that mean they're more or less likely to access the care that they need.
And how confident are you that sufficient capacity and planning in health and social care is going to meet future demand?
Shall I take that? We've got an ageing population, so more people are going to die, and the estimate is an extra 5,000 deaths a year in Wales. At the moment, probably about half of deaths in Wales are in hospital. That's not going to be able to continue, with the pressure on NHS services, and it's not the ideal place anyway for most people to die, in an acute hospital. So, more people are going to need and want to die at home, and nursing homes are the other area where there will be lots more deaths as we go forward to 2040.
My main clinical job, which I haven't explained, is specialist palliative care in the community for the Vale of Glamorgan, so that's what I do as my clinical role. We would look after patients who are dying, in partnership with GPs and district nurses, as a sort of triumvirate, if you like. There's lots of pressure on GP services, and so it's very difficult. There are shortages in district nursing, and difficulty with large caseloads in specialist palliative care as well. So, I would say we need much more resourcing to all of those roles to meet the needs of the population going forward in the next 10, 15 years. More people are going to need and want to die at home, and I'm not sure if we have quite planned enough for all of that.
So, you don't think there is enough planning to do that.
I think we're going to need to expand services to allow people to die comfortably at home with the support that they need.
Okay. Thank you. Members will probably dive in to a lot of what you've said in your opening comments, so thank you. Joyce Watson.
You referred to a palliative care and end-of-life dashboard and you say that will provide data on how patients with gynaecological cancers interacted—you started talking about that—particularly in their last year of life. Will it become a public, that dashboard, and can you give us any further insight into that data?
It's not our data. At the moment, it's not public. It's available to people with an NHS e-mail address, which unfortunately I don't have, so I asked a favour to be able to pull those stats today. It would be great for accountability if we did have some public sight of that data. There's a lot of work through the national programme board for end-of-life care to deliver on the palliative and end-of-life care quality statement. At the moment, I'm not sure what the performance indicators are around there. We'd hope to see some public data, so we can actually start tracking what care is looking like for people in the last year of life. But at the moment, I don't think that is publicly available.
In addition to that, it would really benefit from having some patient reported experience data in there as well, and trying to understand more about, yes, people's experiences. So, you know, was their pain managed? Were they given the support they needed for psychological, spiritual, emotional issues? So, previously, in England, there was a survey of bereaved carers that looked at those things, but we don't have anything like that in Wales yet. The dashboard isn't public, as far as I know, and there is still a bit of work to do to make sure that we have got a good picture of what's happening to people, although, these are some really positive first steps.
Okay. And could you tell us what the other research priorities for Marie Curie Palliative Care Research Centre at Cardiff University are at the moment?
Good question. So, having a look at this kind of data and systems issue is a big priority for them, and the safety of care as well. They do quite a lot of work on involving the public in research. And one of the things I know that is going to be a priority for them is around death literacy. So, actually, there is quite poor public understanding of what palliative care is and what hospice care is and what advanced decisions about care involves. And potentially, that affects how willing people are to seek out or accept that care. There can be quite a few misconceptions, and it can also create problems for when people are communicating as well with healthcare professionals—not necessarily understanding what a diagnosis might mean, not having it explained to them in the right way. So, I know that the centre are quite keen to look at death literacy in the population as well.
Okay, thank you.
Some of the other things that the Marie Curie research centre are focused on are outcome measures for palliative care patients in Wales, so, how we can evidence improvements or prove the worth, if you like, of palliative care services, which is tricky because these people are going to become worse and come towards the end of their life anyway, so, measuring improvement is a difficult thing to do. But they're working on that and they've introduced, or are about to introduce, a set of outcome measures across Wales where we can try and benchmark services, and the Marie Curie hospice in Penarth is probably going to be a pilot site for that. And also, they do lots of bereavement work, don't they, and have fed into lots of the Welsh Government national bereavement work.
Thank you. Should the dashboard be publicly available, do you think?
I don't know what the plans are about making the dashboard publicly available. I can't see why it couldn't or shouldn't be.
That's a clear answer, yes, thank you. We'll explore that, separately. Thank you. Sarah Murphy.
Thank you very much, Chair. Thank you all for being here today. I just have a couple of questions about pain management. So, in your paper, you say that women's pain is sometimes underestimated, partly due to gender bias. What evidence is there that women with terminal gynaecological cancers aren't getting the appropriate pain relief they need, where is this happening and who is responsible for addressing the pain and treatment needs of women as they approach end of life?
Shall I take that? So, I guess I might come to you, Tash, to talk about the specifics that are in your paper in a minute, but I think, as you've probably heard from lots of people as part of this inquiry, some gynaecological cancers—ovarian, for example—the symptoms are quite insidious and not very specific to cancer and therefore it might take quite a long time to diagnose—things like that. Other gynaecological cancers, like cervical cancer, for instance, anatomically, because of where it is, can give you quite complex, neuropathic pain, which can be quite tricky to manage and often needs expert help.
Who's responsible? All clinicians are responsible for assessing and managing pain in the best way that they can and working with patients as partners in that. If generalists like general practitioners, for example, or clinicians in an acute hospital struggle to manage somebody's pain, then that's what people like myself and the clinical teams I work with are for: to give expert, palliative care advice, and that's a lot of what I do. I would have that role, not only in community, but I also work in the acute hospitals in Cardiff and Vale and would see people on gynaecological wards, for example, and give advice and help to manage care.
Thank you very much.
Anecdotally, there isn't a lot of research on this. That's kind of part of the problem, and that's why we are really keen for the women's health plan and the associated research budget to cover palliative care. Last night—. Marie Curie has a stories hub, where we talk to patients and they very generously share their stories with us, and you do see, particularly before palliative care are involved, repeated stories of women feeling like they've had their symptoms minimised or they've been misdirected. It's worth noting that, for women over 65 in Wales who die from these cancers, still only three quarters of them are registered with specialist palliative care. We can pull that from the dashboard. So, palliative care are experts in symptom management. You would think for the quarter of those women who haven't had palliative care involvement, we don't know their experiences, but you can kind of make some assumptions that when they haven't had that expert input, they might not have had the level of care we'd expect them to have, so we really need to understand their experiences, and we're just not at the moment.
I think there's also a misconception, sometimes, that palliative care is just for the very end of life, whereas I'm sure you've all seen in the suspected cancer pathways, palliative care can come in quite early and help to manage people along the illness journey, if you like. We'd like to be able to provide a good and specialist service much earlier for some people.
Absolutely. Thank you very much. My final question, then, is: you also say that women at the end of life can be prescribed sedatives, rather than appropriate pain relief and question the appropriateness of prescribing opiates to women. Are you aware of any research being undertaken on women's access to pain management medications? How would you like to see this issue being addressed?
I'm not aware of any research that looks at gender differences in response to opioids particularly. Strong opioids would be a mainstay of pain relief for people with advanced and progressive cancer, and that's the mainstay of our clinical work, if you like. There is lots of research about individual people's responses to medicines, rather than assuming that everybody reacts to things in the same way, and that's targeted cancer treatments. That's the basis of those. Yes, and there was some suggestion, as Tash has already said, in the paper that Marie Curie had written, about women perhaps needing to persist more with talking about their symptoms before getting an appropriate response.
This isn't specific, necessarily, to gynaecological cancers, but again, anecdotally, just talking to bereaved relatives, sometimes opioids don't work for people, and they need to be believed it they're saying they're still in pain, even if they've had a high dose, and I have heard—. I don't know if there's a gender issue there, but I do know of the care of someone who was a woman where the family really had to advocate, 'No. She's still in pain'. So, yes, we just need to believe people and properly listen to them.
Yes. I don't feel that anybody at that point is pretending that they're still in pain, are they? No, exactly. Absolutely. Thank you both very much, and thank you, Chair.
Thank you, Sarah. Gareth Davies.
Diolch, Gadeirydd. Dwi efo cwestiwn cyntaf yn Gymraeg, jest yn ffocysu ar ofal lliniarol cynnar. Gellir cychwyn gofal lliniarol ar unrhyw adeg yn ystod taith glaf a gall gynnwys yr agweddau seicolegol, cymdeithasol, ariannol ac ysbrydol ar ofal. Beth yw eich dealltwriaeth chi o pam efallai nad yw rhai menywod yn elwa ar ofal lliniarol cynnar yn yr un modd â dynion?
Thank you, Chair. I'm going to ask my first question in Welsh, just looking at early palliative care. It can be initiated at any point during a patient's journey and can include the psychological, social, financial, and spiritual aspects of care. What's your understanding of why some women may not perhaps be benefiting from early palliative care in the same way as men?
I think it's hard at this point to necessarily say—
I didn't hear the translation.
Oh, I'm sorry—
It's looking at, obviously—
There isn't any translation coming through here.
—end-of-life care and the point during a patient's journey, the psychological, social, financial, spiritual aspects of care, and what is your understanding of why some women may not be benefiting from early palliative care in the same way as men, possibly?
So, I was going to say, from the evidence, I don't know if we know at the moment that women aren't benefiting from early palliative care in the same way as men. We know there are some potentially gendered norms in society that might affect how people are willing to accept that care, but it really needs more research, and the research I mentioned that was published before is really a first step on that.
More generally, though, in terms of early palliative care access, there is still the misconception, even within healthcare professionals, that palliative care is for the last few months, and, as Jo has said, that's not the case. You can bring people in a lot earlier—and, potentially, their involvement with palliative care can snake in and out as their condition fluctuates—and provide that general support. And again, talking—because a lot of this is anecdotal, because this is underresearched—to some of the clinicians I know in palliative care, it's so important for gynaecological cancers to have that early involvement to prepare the whole family unit as well. And some of the gendered aspects that came out of my conversations with those palliative care clinicians were, when you think about, potentially, an older woman who has a gynaecological cancer, who might have a vulval cancer, who needs dressings changed, if she's got sons providing that care, or a husband, there are extra taboos there to do with gender, to do with women's bodies, and that early involvement of palliative care could be really beneficial to make sure that everyone's kind of prepared to not just provide that care, but to understand the emotional aspects—there's a change in relationship as well.
So, I think more research is needed, but I think it just shows the importance of early involvement of palliative care, the timeliness of it, and, where appropriate, to take a gender lens, or just to understand how other characteristics—like age, even, will affect the sort of offer of care that's needed.
Yes, and is there evidence—
Sorry, Gareth. Jo, could you just do a translation check? We'll just make sure it's working.
[TRANSLATION: 'This is the translator speaking. You should be able to hear me now. Okay, great, thank you.']
There we are. Lovely. Thank you, Jo. Gareth.
Thanks, Chair. Is there—. Sorry, I'll start again. Are women accepting early palliative care referrals, and is there data to say that there could be better steps to improving that referral process into palliative care, and ways to encourage women to accept some of those early interventions, in terms of enhancing the quality of the care that they receive once referral has happened? And, how can we best manage that in a way that's obviously respectful of the answer you've just given, in terms of how it can be a sensitive subject, and, as you said, it can be a taboo subject around body issues and things? So, with that in mind, can that, then, be translated into looking at how we can improve that referral process and get some early interventions put in?
So, there is data to suggest that lots of people who are referred to palliative care are only referred very late in their illness, and shortly before they die. And so, undoubtedly, we could be involved much earlier for lots of people. Having palliative care very early on in the suspected cancer pathway is great, but we do need enough resource, then, to be able to pick people up earlier and input into their care earlier on.
And back to your question that I didn't quite hear, to provide good holistic, physical, psychological, social and spiritual care, you sort of need a multidisciplinary team of palliative care professionals to be able to do that—so, properly resourced psychology, for example.
I think most women do accept referral to early palliative care if offered, but for some people, there are lots of misconceptions around palliative care, as we've already talked about. People may reject a referral to palliative care, because they think it's only towards the very end of their life, and either don't perceive themselves to be in that position, or haven't been informed that they're in that position, and then your referral to palliative can be quite frightening.
Yes. Do you think that comes down to, sometimes—. Because, naturally, our default method, sometimes—. We're generally quite glass-half-full minded, aren't we? Do you think that's a factor, with men and women saying, 'Actually, I'm hoping that there could be, perhaps, a treatment that would take them off the palliative pathway', if you know what I mean?
Yes. So, I think people, sometimes, see palliative care just at the end and that it's instead of oncological treatment or surgery, whereas it's not, it should be in partnership, and so there needs to be more promotion of—. I think people would benefit from much more promotion about what palliative care can do and that we work in partnership and help to control symptoms and provide support for people at any stage of an illness. There's a lot of supportive care work going on, which means that people with palliative care skills would become involved with patients who are not necessarily terminally ill and may be cured, but can help with things like pain and other symptom control, and the psychological support that they need along that journey, if you like.
And how equitable is access to early palliative care, bearing in mind that people from black and Asian minorities and different races, religions, et cetera—? How equitable and accessible is it in that sense?
Do you want to do the data bit?
We know from the wider research that there are massive inequities to do with ethnicity, and to do with age. So, I indicated earlier that older people don't seem to have the same rates of access as people of, say, working age. Socioeconomic status as well: people from poorer areas don't necessarily have the same access. Rurality is another big issue, especially in Wales. We have a bit of a data issue, in that some of those characteristics aren't always collected. So, ethnicity is a key one there. So, it's quite hard to say for definite, 'This is the size of the inequity.'
Do they tend to just be gender based on that aspect then?
No, so it all interacts—
Is it just that it's not specific enough to delve into a person's ethnic background? Is it just, 'It's either a man or a woman'? Is it quite polarised in that sense, or is there scope to look deeper into it and see how we can enhance that data on a better scale?
Yes, I think there's definitely scope to improve the data. Absolutely. And that's one of the things that I think we'd really hope was—. After the research on gender, that was one of the key recommendations, actually, that the data that's collected just needs to be better, so we can interrogate it, not just to look at differences between men and women, but just to understand, in the round, what's going on for people.
Jo, did you want to add anything?
We've got no evidence to suggest that things like palliative care are offered less to people from black and ethnic minority groups. So, there are probably lots of complex reasons why the take-up might be less. I think there's probably even less awareness of what palliative care is, and what it can do and that it might not be a scary thing that is only available to you when you're dying, in different groups of people. And Marie Curie have done lots of work to try to improve and increase access. But it's tricky, and you need the resource to continue with that. Yes.
Yes. Okay, Chair.
Thank you. Joyce, I think it is. Joyce Watson. Am I right?
Yes, you are. I just want to explore something you've said just now, and you said that access to palliative care, one of the determinants for not seeking it is poverty. You also said earlier on, and it's a fact, that older people, women, tend to die or need palliative care or end-of-life care as a consequence of cancer. So, I'm trying to link two things here. Have you looked at particularly why poverty? I link those two things because women on their own are quite likely, in the older age group at the moment, to maybe not have financial security in their own right. So, that's why I've linked those two things. So, why do you think poverty is playing a part? That's what I'd want to understand.
It's something that, at Marie Curie more generally, we've been trying to unpick over the last year, because, obviously, Wales does see high rates of poverty, and trying to understand its impact on care. So, previously, I think, there's sometimes been a perception that we need to just get everyone dying at home, but poverty, if someone's in a house that's maybe not suitable for care to be provided in, if it's cold, if it's multiple occupancy, we need to be looking at it through that lens as well, because it will really affect where is an appropriate place of care and potentially an appropriate place of death, and whether someone might need to go into hospital. It's a really tricky one, and it all does interact as well. How it interacts with gender, again, more research is needed, and I wish I could say more than that, but it really desperately is. But, yes, we know that that should be one consideration, an appropriate place of care. And because palliative care does try and take this holistic view of things, making sure people are in an environment where they can get all the support that they need, where they can do the practical things that are a part of dying as well, poverty should be something we should be considering.
That leads me on to the immense misconceptions of the terminology, quite frankly, and the difference between palliative care and end-of-life care. How well do you think that's understood by people—I can see you shaking your head—but also by the health professionals who might direct those individuals into those pathways?
So, in terms of the general public, I don't have the stats in front of me, but we did do a survey last year of people in Wales, just to understand what they know about death and dying, and what they think about death and dying, and we were quite shocked at how high the rates were of just being unfamiliar with terms such as 'end-of-life care'. It's not even that they didn't know what they mean, but they just weren't familiar with them, and it's even worse when you come to things like DNACPR—do people know what that is? Do they know how to go about it? And making advanced decisions, do people know what that means? Generally, no, most people don't. So, when it comes to palliative and end-of-life care, that's just looking at whether people are familiar; whether they've actually got the right impression if they are unfamiliar, we don't know. So, that is a massive issue. I think, as Jo has said before, that's going to impact on whether people feel like they want to have involvement from palliative care, because there's a perception that palliative care, for some people, is giving up, and it's not; it should be seen in addition to treatment, as adding value. It's about quality of life. Jo, I don't know if you've got anything to say about healthcare professionals.
Yes. I think, even among healthcare professionals, there is a perception that palliative care is only for the very end of your life. End-of-life care should be the last year of life, rather than the last few days, but then sometimes you only know the last year in retrospect, don't you? It's sometimes quite difficult to predict. So, yes, there are misconceptions amongst healthcare professionals as well and there's lots more stuff that we, as palliative care clinicians, could do to promote that.
I think, also, Cardiff and Vale health board is an example of where we have termed it 'supportive care', really, to be slightly less scary and threatening, to have much more involvement earlier on. This is focused on the non-cancer side, to be working in partnership with people who are treating patients with heart failure, and being involved at a very early stage—renal failure, liver disease and lung diseases. So, that's an initiative from Cardiff and Vale health board, which, I think, has lots and lots of potential to improve things for patients and families.
And finally from me, it is about terminology, and there is probably a misunderstanding from the outset, because if people are given a terminal diagnosis, it doesn't mean they're going to die straight away; people could have a terminal diagnosis that could go on for many years. So, is there a link between, at the very outset, what a terminal diagnosis means, and could something be done there to understand the palliative care that could help with that terminal diagnosis before we get to the end-of-life care, and is there any work being done, would you know?
So, I think using the words 'terminal illness' is really difficult and very scary for people, and probably isn't a helpful term. I think that there is work being done all the time on the ground by clinical staff to try and re-educate people, and in terms of formal education and things as well, we would always explain exactly what palliative care is and what our role might be, but we've probably got a long way to go in trying to get that concept across. Yes, it is about terminology, and I know that Marie Curie have used the 'terminal illness' phrase a lot, and it's now being looked at as to whether that's still helpful.
What's the appropriate phrase to use?
That's the question.
It's a debate that we're all having. Palliative care is about progressive and incurable disease, if you like. But, if you are a young woman with breast cancer and bone secondaries, that's probably not going to be a curable disease, but you may well be quite well for the next 10 years with modern treatments, so it's getting that across.
There we are. Thank you. Mabon ap Gwynfor.
Diolch yn fawr iawn, Gadeirydd. A gaf i wirio bod y cyfieithu'n gweithio? A gawn ni gadarnhau?
Thank you very much, Chair. Can I check that the interpretation is working? Can we have confirmation of that?
We're all working. Yes, it is.
Dyna fo. Diolch. A diolch am eich tystiolaeth y bore yma, mae e wedi bod yn werthfawr iawn o'm rhan i. O fynd ymlaen ychydig, dwi jest eisiau gwybod eich barn, os gwelwch yn dda, ynghylch ydy Llywodraeth Cymru yn buddsoddi yn y gwasanaethau cywir o ran cefnogi menywod gyda'u taith ddiwedd oes.
There we are. Thank you. And thank you for your evidence this morning, it's been very valuable, in my view. Going on a little, I just want to know your views on whether the Welsh Government is investing in the right services when it comes to supporting women with their end-of-life journey.
So, Welsh Government is supporting lots of different aspects of palliative care, and I know that increased funding for hospices has been made available in the last Government cycle, if you like. It's about how you best focus the resource, isn't it? I think resources will be best focused, perhaps, on community, because lots of people will need to die at home or in nursing homes. It's about education for generalist staff, GPs and district nurses, as well as the focus on specialist palliative care, and it's about social care as well. So, the reason why lots of people can't stay at home is because there's inadequate social care available, and social care staff, as we all know, need to be valued as an important role to have, but they also need palliative care education. So, that's what I would say about the resource. Did you want to add to that, Tash?
Yes. So, we are in a good position, in some ways, in Wales that we have a national programme board for end-of-life care with strong clinical leads. A quality statement for palliative and end-of-life care was published last year. It's very aspirational, and the work of the programme board has been very focused on doing a funding review, which is important, but it's whether, from a leadership point of view, they have enough capacity to be turning that quality statement into reality and progressing with the work streams that they need to. So, as Jo said early on, we're expecting a real rise in the number of people dying in Wales over the next 15, 20 years. The need for palliative care is going to go up massively as well. We really need a rocket behind this policy area now. So, there are good things, but it's getting the urgency there, to act on it and to properly resource it, especially when it comes to community care, as Jo has said.
Diolch. Felly, yn ôl beth rydych chi'n dweud rŵan, mae'r uchelgais yn ddyheadol iawn, mae yna gynnydd wedi bod mewn cyllid o ryw fath. Ond, o ystyried y dyheadau yna a'r anghenion sydd ar gynnydd, ydych chi'n meddwl bod y cyllid sy'n cael ei roi mewn lleoedd hosbis yn ddigonol?
Thank you. Therefore, from what you're saying now, the ambition is very aspirational, there has been progress in funding. But, given those aspirations and the needs that are on the increase, do you think that the funding in place for hospices is sufficient?
Sorry, that went off and is back on again. I think that hospices would benefit from lots more resource; palliative care across the board would benefit from lots more resource. I'm sure every aspect of everyone in healthcare would say that. But this does seem like a perfect storm that is coming to us, in that our ageing population are unfortunately not going to live for ever; most people will have a palliative care need at some point in their life, more towards the end of their life, and it's going to be a measure of the effectiveness of health and social care within Wales as to how we manage all of that.
We've got the programme board, which is trying to prioritise the focus for palliative care and how we can be our most effective, and the quality statement, to try to give us aspirational stuff to work towards. I know there are lots of intricacies and controversies about funding for hospices. In palliative care, I'm somebody that works in a hospice and an NHS employee, and work in an acute hospital. We are all trying to work together in an integrated way and work across the board.
Roeddwn i'n cymryd diddordeb yn benodol yn rhywbeth ddaru un ohonoch chi ei ddweud ynghynt, fod yna ddiffyg dealltwriaeth o dermau elfennol, er enghraifft, 'gofal diwedd oes', a phobl jest ddim wedi dod ar draws y term yna o'r blaen, ac felly, hwyrach, ddim yn deall y cysyniad yn iawn, er yn deall y geiriau, wrth gwrs. A ydych chi'n meddwl bod Llywodraeth Cymru yn gwneud digon drwy'r strategaethau sydd gan y Llywodraeth a'r ymyriadau maen nhw'n eu gwneud er mwyn annog pobl yn gyffredinol—ein poblogaeth ni yma yng Nghymru—i ddeall y pethau yna, a hefyd felly i siarad am farwolaeth a marw a'r holl bethau sydd yn ymwneud â hwnna yn ddigonol, fel bod pobl yn medru gwneud y dewisiadau cywir ar gyfer eu gofal diwedd oes nhw? Beth ydy'ch barn chi ar hynny?
I was interested specifically in something that one of you said earlier, that there was a lack of understanding regarding basic terms, for example, 'end-of-life care', and people just not having come across that term before, and therefore perhaps not understanding the concept correctly, but understanding the words, of course. Do you think the Welsh Government is doing enough through its strategies and the interventions they make to encourage the general population—our population here in Wales—to understand those issues, and therefore talk about death and dying and all those issues relating to that sufficiently, so that people can make the right choices for their end-of-life care? What are your views on that?
So, there are lots of issues with the terminology, as Joyce said. I think Welsh Government, clinicians, organisations like Marie Curie, we could all do much more to help the public perceptions of what palliative care and end-of-life care is and what it can do. I think, in society at the moment, death's quite a taboo subject, as Gareth said. Lots of us are glass-half-full people and we don't want to think about dying and the end of our lives unless we really have to. But, if we don't encourage those people who are unwell or elderly, have lots of co-morbidities and are towards the end of their life to plan, then crises tend to happen and people tend to end up in hospital, for example.
There's a lot of work going on with advance care planning to try to encourage conversations about what people might want towards the end of their life, to talk about what's important to them, talk to their families and put some plans in place. As part of that, people may well talk about where they may want to die, but choices are quite limited, and, as I said, we need lots of provision in the community for people to be able to die, because I can't really see other places where that can happen for large groups of people; acute hospitals won't necessarily be appropriate, and hospices have only got quite small provision in terms of in-patient beds.
Just to add to that as well, I feel that there are good things happening around having that public conversation. Dying Matters Awareness Week is something that Hospice UK run, isn't it, and there are little things that happen that are, hopefully, moving the conversation forward a little bit. But there is a massive death literacy issue. There's a massive health literacy issue in general in Wales. It should be considered a public health issue, getting people familiar with those terms so they can be active participants in their care. And that is going to take time, and it really does need a bit more focus because there are so many communication issues, where people aren't empowered, really, to be properly involved in their care because they don't know what's happening. What Joyce said earlier about the poverty issue as well; if you think about just that general literacy point, we really need to think about how we can be getting people familiar with these terms earlier on, so they can be comfortable when they think about how it's going to apply to them when they're potentially in quite a vulnerable situation. So, there's still a lot of work to do, I think.
Diolch. Sori, dwi yn ymwybodol bod amser yn dynn. Dwi ar Zoom yn fan yma felly'n methu â gweld y cyfathrebu yn glir. Ond yn olaf o'm rhan i, os caf i felly, dyma'ch cyfle chi: pa argymhellion ddylai'r pwyllgor yma eu gwneud i Lywodraeth Cymru i sicrhau bod y sylw i anghenion gofal lliniarol a diwedd oes nad ydyn nhw ar hyn o bryd yn cael eu diwallu ar gyfer menywod, yn benodol menywod gyda deiagnosis o ganser gynaecolegol terfynol sy'n agosáu at ddiwedd eu hoes? Felly, pa argymhellion ydych chi'n meddwl ddylai'r pwyllgor eu gwneud?
Thank you very much. Sorry, I am aware that time is scarce. I'm on Zoom therefore can't see the communication clearly. But finally on my part, if I may, this is your opportunity: what recommendations should this committee make to the Welsh Government to ensure unmet palliative and end-of-life care needs for women—specifically for women with a terminal gynaecological cancer diagnosis approaching the end of their life—are addressed? What recommendations would you recommend?
Jo, if you want to come in on the question before as well, by all means make a start on that.
I would like to recommend that all women with gynaecological cancers who are likely to have complex symptoms or progressive disease that will shorten their life would be offered early access to palliative care, and that there’s enough resource within palliative care to provide a good service to them.
And I think, as I mentioned earlier, when it comes to the women and girls health plan, palliative care should be included in it, because it's an essential part of women's health, and we can't shy away from that. Any research budget attached to that plan as well, there should be something ring-fenced for palliative care, because I feel, like I've said so many times today, we haven't got quite the amount of research we need, but we know anecdotally, so we need to properly be exploring that. And there is just a wider point about palliative care planning as well, and making sure, as Jo said, we’re ready for that kind of explosion in need by properly thinking about the community infrastructure and how that’s going to fit around not just women with gynaecological cancers but everyone at the end of life. So, yes.
And we're very grateful to have been invited here today, so thank you. But palliative and end-of-life care was missed from the original terms of reference of the inquiry, so it's just having an awareness of you always need to think about palliative and end-of-life care.
Absolutely. I think that's come out through the evidence session and quite powerfully as well, so thank you. Gareth, sorry, did you want to come in?
Yes, thanks, Chair. I just wanted to pick up, because, obviously hearing some of your evidence this morning, we spoke a lot about Cardiff and Vale issues down here, but have you got any data or specifics on different regions across Wales in terms of getting that research and what data we do have in terms of improving access to palliative care? Because, obviously, we've got different health boards, we've got different demographics and everything, and, in terms of that, do we have that access to look at those regional differences and compare different regions and look at best practice to see where we can learn lessons and see how we can improve things in different areas of Wales?
Yes. So, I think with the dashboard that I mentioned it should be possible to look at what's happening across different localities. I think you have locked on to a really good—
The dashboard that we can't see.
Yes, that people with an NHS e-mail address can see, but I can't see and you can't see. But I think you've locked on to a really good thing about best practice as well, because there is good stuff happening across Wales, and—I'm sure you've heard this in other evidence sessions—it doesn't spread very well. So, bringing that together is a really essential part of making sure we can learn from what's happening in different places, and where it's appropriate it can spread. But we'd really keen to follow up with you afterwards so we can talk about what's happening in local areas.
Just if I may, Chair, obviously you can only speak from a Marie Curie perspective, but, looking at how you with work in partnership with maybe smaller hospices as well, because I look at St Kentigern's in my constituency, and there'll be St David's in Llandudno and there'll be many of them dotted around other parts of Wales, so is there some partnership working with that in terms of the referral process and maximising those opportunities into palliative care if the need is there?
Yes. So, Hospices Cymru brings all the different hospices together across Wales to have those conversations at a high level. I know on the ground hospices do work together really closely, don’t they, in different services.
Yes, and within the clinical communities we are in constant contact with each other. And I think, as Tasha's already said, we've got the quality statement that gives us aspirations to work towards, but how you do that in separate areas of Wales might not be the same. So, I didn't mean to just focus on Cardiff, and in fact I'm—
No, no, I was just trying to broaden the conversation.
I'm from Rhyl, in fact; I'm sorry my Welsh isn't good enough to translate myself. But, you know, the rurality in north and west Wales makes services sometimes more tricky to deliver and sometimes they need to be delivered differently. They might do more virtual working, for example.
And when it comes to those questions as well about death literacy and involving people, I'm working with Hospice UK at the moment and a photographer based up in Flintshire. So, we are collecting people's stories about what matters most to them at the end of life, and some of those have been women at the end of life, some of those have been people who cared for women at the end of life. It's not women focused, but we have got a lot of women's stories, and trying to unpick some things, like rurality or just making sure that not everything is focused around Cardiff, is really important to us as well.
Yes, thanks.
Joyce.
Have you been able—? Again, I know it's going to come back to data, but the collection of data between who will ask for palliative care more frequently, and is it more likely that a parent of a child who has a cancer diagnosis or a terminal diagnosis will ask for palliative care for their child—I'm talking about adults, of course—or is it less likely, the other way around, that children would seek it on behalf of their parents? I'm just trying to get my head around this, because you talk about an ageing population, and you're right, but the children, very often, are still advocating because of that longevity that didn't exist before. That's why I ask the question.
So, that's partly death as a taboo subject, and we're all expecting to live longer and be healthy to the very end of our life. Paediatric palliative care does exist as a separate specialty, and the numbers, fortunately, are very small in terms of children coming towards the end of their life. There is the same resistance, sometimes, from parents, though, to palliative care referral, because that means everything's bad and time is very short.
I was just going to say, thinking about adult children as well—
That's what I meant, really, was adult children.
Sorry.
I'm not sure of much research in terms of acceptability and whether it's sought out, but the research that was done looking at gender and end of life was looking at Marie Curie data, but did split under 65 and over 65, and you did find different preferences in the younger people. So, I think they're more likely to want to die in a hospice than at home. There were slight different things—small numbers in terms of the differences, so, again, it needs to be explored more. But I don't know if that's because they've got relationships with their parents advocating for them, or perhaps they're parents themselves and don't want to be at home if they've got young children so would prefer into a hospice. But age is definitely a factor that needs to be considered when you're trying to figure out what is the most appropriate care for someone, and what matters to them, because they're going to have so many other things going on in their life. Someone who's 85 might be in a very different position from someone who's 35.
Exactly. That's why I asked the question, and I'm sorry I didn't—
No, I'm sorry that I misunderstood.
—make it clear. But it would be interesting to look at.
I think what we don't have good data on—I was just thinking as you spoke—is the number of people who are offered and decline palliative care. I think that would be interesting data to have, really, and why—that's more on the research side, isn't it—why people might have declined.
Okay, thank you.
Why do you think that might be the case?
I think perhaps because of the way it is put across. We've talked a lot about misconceptions about it being at the very end of life, so not good awareness about what we actually do, and lots of us bear the responsibilities for communicating that, don't we?
Absolutely. Okay. Well, thank you for coming to us this morning and for giving us evidence. We appreciate it. We'll give you a transcript of the proceedings, but please feel free to add to anything you've said this morning if you think that's going to be helpful to our inquiry. But this was the last session ahead of us having our final session with the Minister in September, so diolch yn fawr iawn. Thank you very much for being with us this morning.
Diolch yn fawr.
Diolch. Thank you again for including us.
Item 4, there are a number of papers to note this morning. There's correspondence with the Welsh Government on dentistry and hospital discharge guidance, there is correspondence with Health Education and Improvement Wales and the UK Government on gynaecological cancers, and information received from Professor Mark Llewellyn regarding the evaluation of the Social Services and Well-being (Wales) Act 2014. So, the papers are all set out on the agenda. Are Members happy to note the papers? That's great, thank you very much.
Cynnig:
bod y pwyllgor yn penderfynu gwahardd y cyhoedd o weddill y cyfarfod yn unol â Rheol Sefydlog 17.42(ix).
Motion:
that the committee resolves to exclude the public from the remainder of the meeting in accordance with Standing Order 17.42(ix).
Cynigiwyd y cynnig.
Motion moved.
I move to item 5, and I propose, in accordance with Standing Order 17.42, that the committee resolves to exclude the public from the remainder of the meeting. Are Members content?
Thank you. In that case, we'll now proceed into private session.
Derbyniwyd y cynnig.
Daeth rhan gyhoeddus y cyfarfod i ben am 11:39.
Motion agreed.
The public part of the meeting ended at 11:39.