Speeches recovered from the Conservative party’s online archive More…

Morgan: Ending the postcode lottery for sight-saving drugs

Speech to the National Assembly for Wales.

"On behalf of the Welsh Conservative Party, I propose this motion, which relates to the provision of the drug Lucentis and treatment for those suffering from wet age-related macular degeneration.

Until yesterday afternoon, this debate was intended to shine a spotlight on the scandal of the Assembly Government's refusal to fund the effective treatment of wet age-related macular degeneration across Wales. Imagine my surprise—and my delight—when, at 2.58 p.m. yesterday, the Minister for Health and Social Services miraculously released a statement assuring us all that the drug Lucentis would be funded to the tune of £5 million for wet age-related macular degeneration sufferers in Wales.

I am delighted that this statement has been made. However, it would not have been made had it not been for this debate this afternoon and the powerful and active lobby by all those people supporting the Royal National Institute of Blind People campaign. I pay tribute to those who are in the public gallery today, watching this debate, and to those outside the gallery who supported that campaign; it is clear that such a powerful lobby has persuaded the Minister to act.

As the wording of our debate, which was tabled last week, would suggest, we as a party join RNIB Cymru in wholeheartedly welcoming the Minister's announcement. I am pleased that at least we have reached this stage in Wales of money being made available. I hope that the reality will mean that more than 1,300 people in Wales could have the chance of their sight being saved.

Despite the word 'age-related' in its name, many of the people affected by AMD are still of working age, they still contribute to society, and they have active lives in a variety of ways. They are people, for example, like two of my constituents, Thea Phillips and Patricia Summers, who are here with us today. Mrs Phillips is a post-16 teacher for the Workers' Educational Association, who drives to work, across south Wales, from her home in the village of Rhiwbina. Her work involves tutoring adults in post-16 education, and she deals with a range of abilities, and must constantly adapt to the needs of those whom she teaches. Patricia Summers, another constituent of mine from Cardiff North, and who lives closer to the centre of Cardiff, is a foster carer. She has received several accolades for her work, and has helped countless youngsters to lead a normal life by giving them a stable home and a bright future.

Like the rest of us in the Chamber, these women depend totally on their sight. Their work serves to highlight only the tip of the iceberg of what society could lose should people like Thea and Patricia not be given the proper treatment for wet AMD. However, as welcome as yesterday's announcement was that the Welsh retinal group had advised the Minister for Health and Social Services finally to sit up and take notice, as ever with the Labour Party's forced decisions, the devil is in the detail.

The National Institute for Health and Clinical Excellence has been examining this since August 2004, and has long been expected to issue guidance on the use of Lucentis this summer. However, the Welsh Assembly Government rather hoped that no-one would make an issue of the NICE decision before now. In a letter to me, dated 21 May, the Minister for health made no mention at all of this Welsh retinal group or of any anticipated decision from any advisory body.

However, she did point to the NICE timescale which is due to report next week, with a decision being implemented in the autumn. Despite the remarkably low profile of this Welsh retinal group, less than a month after I wrote to the Minister with concerns surrounding the provision of Lucentis, it was somehow in a position to advise her to fund the treatment.

The announcement raises many more questions. I know, from talking to patients and clinicians, that NICE was likely to recommend the approval of the drug, with only a technical appeal now standing in the way. I know that the Minister has accepted that. If NICE recommends the drug, local health boards, or whatever replaces them, will be under a statutory requirement to fund Lucentis anyway.

Therefore, what exactly did the Minister announce yesterday? She announced funding for a drug that the NHS would have been mandated to provide anyway some time in the next three months. She announced it with a timescale that would, in all probability, have been the natural course of events in the wake of the NICE decision. However, if a patient develops wet AMD today or tomorrow, they could easily be blind by the time this decision is put into action. We have to accept that capacity needs to be built into the system now. We need the Government to take early steps to ensure that those who are suffering from wet AMD can get that treatment now and do not have to wait until the autumn, which may well be too late for many people in Wales today.

Yesterday's announcement is seen by many people here today and by many people watching the news as a cynical ploy. I do not believe that it was a cynical ploy; I think that this debate is right because it gives the Government an opportunity to tell us how this programme will be rolled out. I was not going to cancel this debate, because so many people had decided to come here to listen to what the Minister had to say. However, the Government has had to recognise the powerful lobby of people in Wales who accept that Lucentis is a treatment that can work for those who suffer from wet AMD and that it can ensure that they retain their sight.

What will the Assembly Government tell Thea Phillips, Patricia Summers and the 405 other people living in my constituency who wrote to me about this issue? How will we explain where the funding is coming from and how it will be rolled out in future years? We have to give people assurances—and it is an assurance that we want this afternoon—that this announcement is not just to plug a gap between the autumn of this year and the end of the financial year but it is part of a long-term strategic approach to delivering care and treatment to those who may lose their sight. We need those assurances on funding.

No mention has been made in the Minister's statement of those people who are already out of pocket having had to pay privately for Lucentis. There is no mention either of those people who have started to pay privately but whose treatment is ongoing and therefore will still require treatment after the action noted in her statement is put into effect.

Consider, for example, the case of Eileen Younghusband, who has paid £12,000 out of her own pocket to fund Lucentis. Her treatment is ongoing and will continue beyond the start of your programme in the autumn. Will she be able to access this treatment on the national health service?

These are the sorts of questions that people are rightly asking. In one year's time, unless we have that assurance about the strategic direction of this money, of the capacity building required, and of how the Government will ensure that local health boards—or whatever replaces them—have the ability to deliver the service, we could be back to square one with a postcode lottery operating across Wales. We do not want to see that, and that is why I felt that it was important that this debate continue today, regardless of the fact that the Minister made her statement yesterday.

There are unanswered questions, Minister, and I hope that you will be able to respond to them in this debate. I hope that you will recognise the validity of the arguments of those who have been lobbying you for many months and years to ensure that this treatment is available. If we do not have those answers today, yesterday's statement might not be worth the paper it was written on, and people listening to this debate today could easily leave the building feeling uncertain as to what the future holds. There are unanswered questions and I believe strongly that the Minister has a duty to provide answers this afternoon."

"Ar ran Plaid Geidwadol Cymru, cynigiaf y cynnig hwn, sy'n ymwneud â darparu'r cyffur Lucentis a thriniaeth i'r rheini sy'n dioddef gan ddirywiad macwlaidd gwlyb sy'n gysylltiedig â henaint. Hyd brynhawn ddoe, bwriad y ddadl hon oedd tynnu sylw at sgandal y gwrthodiad gan Lywodraeth y Cynulliad i ariannu triniaeth effeithiol ar gyfer dirywiad macwlaidd gwlyb sy'n gysylltiedig â henaint. Meddyliwch gymaint oedd fy syndod—a'm llawenydd—pan gyhoeddodd y Gweinidog dros Iechyd a Gwasanaethau Cymdeithasol ddatganiad am 2.58 p.m. ddoe, yn fwyaf rhyfedd, gan sicrhau pob un ohonom y byddai cyllid o £5 miliwn ar gael ar gyfer y cyffur Lucentis i rai sy'n dioddef gan ddirywiad macwlaidd gwlyb sy'n gysylltiedig â henaint yng Nghymru.

Yr wyf wrth fy modd bod y datganiad hwn wedi'i wneud. Fodd bynnag, ni fyddai wedi'i wneud oni bai am y ddadl hon y prynhawn yma a'r lobïo grymus ac egnïol gan yr holl bobl hynny sy'n cefnogi ymgyrch Sefydliad Cenedlaethol Brenhinol Pobl Ddall. Rhoddaf deyrnged i'r rheini sydd yn yr oriel gyhoeddus heddiw, yn gwylio'r ddadl hon, ac i'r rheini y tu allan i'r oriel a gefnogodd yr ymgyrch honno; mae'n amlwg bod lobïo mor rymus wedi perswadio'r Gweinidog i weithredu. Fel yr awgrymai geiriad ein dadl, a gyflwynwyd yr wythnos diwethaf, yr ydym ni fel plaid yn ymuno ag RNIB Cymru wrth groesawu cyhoeddiad y Gweinidog yn frwdfrydig. Yr wyf yn falch ein bod wedi cyrraedd y fan hon yng Nghymru o leiaf, lle y mae arian yn cael ei ddarparu. Yr wyf yn gobeithio y gallai mwy nag 1,300 o bobl yng Nghymru gael cyfle i achub eu golwg o ganlyniad i hyn.

Er gwaethaf y geiriau 'cysylltiedig â henaint' sydd yn ei enw, mae llawer o'r bobl y mae dirywiad macwlaidd yn effeithio arnynt o oedran gweithio o hyd, maent yn dal i gyfrannu i gymdeithas, ac mae ganddynt fywydau prysur mewn amryw o ffyrdd. Maent yn bobl, er enghraifft, fel dwy o'm hetholwyr, Thea Phillips a Patricia Summers, sydd yma gyda ni heddiw. Mae Mrs Phillips yn athrawes ôl-16 i Gymdeithas Addysg y Gweithwyr, sy'n gyrru i'w gwaith, ar draws de Cymru, o'i chartref ym mhentref Rhiwbeina. Mae ei gwaith yn cynnwys hyfforddi oedolion mewn addysg ôl-16, ac mae'n delio ag amryw o alluoedd, a rhaid iddi ymaddasu'n gyson i anghenion y rheini y mae'n eu haddysgu. Mae Patricia Summers, un arall o'm hetholwyr o Ogledd Caerdydd, ac sy'n byw'n nes at ganol Caerdydd, yn ofalwr maeth. Mae wedi'i chanmol nifer o weithiau am ei gwaith, ac mae wedi helpu pobl ifanc ddi-rif i fyw bywyd normal drwy roi iddynt gartref sefydlog a dyfodol disglair.

Fel y gweddill ohonom yn y Siambr, mae'r menywod hyn yn dibynnu'n llwyr ar eu golwg. Ac ystyried maint eu gwaith, mae hyn yn dangos cymaint y gallai cymdeithas ei golli pe na fyddai rhai fel Thea a Patricia yn cael y driniaeth briodol ar gyfer dirywiad macwlaidd gwlyb sy'n gysylltiedig â henaint. Fodd bynnag, er mor dderbyniol oedd y cyhoeddiad ddoe fod grwp retinol Cymru wedi cynghori'r Gweinidog dros Iechyd a Gwasanaethau Cymdeithasol o'r diwedd i ddeffro a chymryd sylw, fel y mae bob amser yn achos penderfyniadau sydd wedi'u gorfodi ar y Blaid Lafur, yn y manylion y mae gwraidd y drwg.

Mae'r Sefydliad Cenedlaethol dros Iechyd a Rhagoriaeth Glinigol wedi bod yn ystyried hyn ers mis Awst 2004, a bu disgwyl ers tro y byddai'n cyhoeddi arweiniad ar ddefnyddio Lucentis yr haf hwn. Fodd bynnag, lled obeithiai Llywodraeth Cynulliad Cymru na fyddai neb yn codi dadl ynghylch penderfyniad NICE cyn hyn. Mewn llythyr ataf, dyddiedig 21 Mai, ni soniodd y Gweinidog dros iechyd yr un gair am grwp retinol Cymru nac am unrhyw benderfyniad a ddisgwylid gan unrhyw gorff cynghori.

Er hynny, cyfeiriodd at amserlen NICE sydd i fod i adrodd yr wythnos nesaf, gan roi penderfyniad ar waith yn yr hydref. Er mor rhyfeddol o ddi-sôn-amdano y mae grwp retinol Cymru, lai na mis wedi imi ysgrifennu at y Gweinidog gan fynegi pryderon ynghylch darparu Lucentis, yr oedd rywsut mewn sefyllfa i'w chynghori i ariannu'r driniaeth.

Mae'r cyhoeddiad yn codi llawer mwy o gwestiynau. Gwn, o siarad â chleifion a chlinigwyr, fod NICE yn debygol o argymell cymeradwyo'r cyffur, a dim ond apêl dechnegol sy'n sefyll yn y ffordd bellach. Gwn fod y Gweinidog wedi derbyn hynny. Os bydd NICE yn argymell y cyffur, bydd byrddau iechyd lleol, neu beth bynnag a ddaw yn eu lle, yn wynebu gofyniad statudol i ariannu Lucentis beth bynnag. Felly, beth yn union a gyhoeddodd y Gweinidog ddoe? Cyhoeddodd gyllid ar gyfer cyffur y byddai'r GIG wedi'i orfodi i'w ddarparu beth bynnag rywdro yn y tri mis nesaf. Fe'i cyhoeddodd gydag amserlen a fyddai wedi codi beth bynnag, yn ôl pob tebyg, yn sgil y penderfyniad gan NICE. Fodd bynnag, os bydd claf yn cael dirywiad macwlaidd gwlyb sy'n gysylltiedig â henaint heddiw neu yfory, mae'n ddigon posibl y gallai fod yn ddall erbyn rhoi'r penderfyniad hwn ar waith.

Mae'r cyhoeddiad ddoe'n cael ei weld yn ystryw sinigaidd gan lawer o bobl sydd yma heddiw a chan lawer sy'n gwylio'r newyddion. Nid wyf yn credu ei fod yn ystryw sinigaidd; credaf ei bod yn briodol cael y ddadl hon gan ei bod yn rhoi cyfle i'r Llywodraeth ddweud wrthym sut y rhoddir y rhaglen hon ar waith. Nid oeddwn am ddiddymu'r ddadl hon, gan fod cynifer o bobl wedi penderfynu dod yma i wrando ar yr hyn a oedd gan y Gweinidog i'w ddweud. Fodd bynnag, mae'r Llywodraeth wedi gorfod cydnabod y lobïo grymus gan bobl yng Nghymru sy'n derbyn bod Lucentis yn driniaeth sy'n gallu gweithio i'r rheini sy'n dioddef gan ddirywiad macwlaidd gwlyb sy'n gysylltiedig â henaint ac y gall sicrhau eu bod yn cadw eu golwg.

Beth a ddywed Llywodraeth y Cynulliad wrth Thea Phillips, Patricia Summers a'r 405 o bobl eraill sy'n byw yn fy etholaeth a ysgrifennodd ataf ynghylch y mater hwn? Sut yr eglurwn o ble y daw'r arian a sut y caiff ei ddefnyddio yn y blynyddoedd i ddod? Rhaid inni sicrhau pobl—ac mae'n sicrwydd yr ydym am ei gael y prynhawn yma—nad unig bwrpas y cyhoeddiad hwn yw llenwi bwlch rhwng hydref eleni a diwedd y flwyddyn ariannol ond ei fod yn rhan o strategaeth hirdymor i ddarparu gofal a thriniaeth i'r rheini a allai golli eu golwg. Mae arnom angen y geiriau hynny o sicrwydd am ariannu.

Ni soniwyd yn adroddiad y Gweinidog am y bobl hynny sydd eisoes ar eu colled ar ôl gorfod talu'n breifat am Lucentis. Nid oes sôn ychwaith am y bobl hynny sydd wedi dechrau talu'n breifat ond bod eu triniaeth yn parhau ac a fydd felly'n dal angen triniaeth ar ôl cymryd y camau a nodwyd yn ei datganiad.

Ystyriwch, er enghraifft, achos Eileen Younghusband, sydd wedi talu £12,000 o'i harian ei hun i gael Lucentis. Mae ei thriniaeth yn mynd ymlaen a bydd yn parhau ar ôl dechrau'ch rhaglen yn yr hydref. A fydd yn gallu cael y driniaeth hon dan y gwasanaeth iechyd gwladol? Dyma'r mathau o gwestiynau y mae pobl yn eu gofyn, a hynny'n briodol. Ymhen blwyddyn, oni chawn y sicrhad hwnnw am gyfeiriad strategol yr arian hwn, am y gallu y mae angen ei feithrin, ac am y modd y bydd y Llywodraeth yn sicrhau y bydd byrddau iechyd lleol—neu beth bynnag a ddaw yn eu lle—yn gallu cyflenwi'r gwasanaeth, gallem fynd yn ôl i'r fan lle'r oeddem gyda loteri cod post ledled Cymru. Nid ydym am weld hynny, a dyna pam y teimlais ei bod yn bwysig i'r ddadl hon fynd ymlaen heddiw, er bod y Gweinidog wedi gwneud ei datganiad ddoe.

Mae cwestiynau sydd heb eu hateb, Weinidog, ac yr wyf yn gobeithio y byddwch yn gallu ymateb iddynt yn y ddadl hon. Yr wyf yn gobeithio y byddwch yn cydnabod dilysrwydd y dadleuon gan y rheini a fu'n eich lobïo am fisoedd a blynyddoedd lawer i sicrhau bod y driniaeth hon ar gael. Os na chawn yr atebion hynny heddiw, gallai'r datganiad a gafwyd ddoe fod yn ddiwerth, a byddai'n ddigon hawdd i'r rhai sy'n gwrando ar y ddadl hon heddiw fynd o'r adeilad gan deimlo'n ansicr ynghylch yr hyn sydd i'w ddisgwyl. Mae cwestiynau sydd heb eu hateb a chredaf yn gryf fod y Gweinidog dan ddyletswydd i roi atebion y prynhawn yma."

Keyboard shortcuts

j previous speech k next speech