Leaders' Questions

Last Friday, with Deputy Billy Kelleher, I met a group of Alpha-1 patients who were on the drug Respreeza and who told us their stories and individual case histories. From 2006 onwards they had been part of a clinical trial involving the drug, which slows down the progression of emphysema in patients with severe Alpha-1 deficiency. From 2010 onwards they had been part of a compassionate access programme which had been ceased by the company, CSL Behring, in September 2017. Following discussions the company made the drug available again, but the HSE refused to administer it. There was an unedifying impasse and in the intervening period two patients, Anna Cassidy and Marion Kelly, died. A compromise was then reached. It will last until May. All of the patients I met had been on the drug for years. All had reported the benefits of the drug for them, to which their families testified. I met Marion Kelly's sister, Niamh. Marion had been the youngest of the cohort of patients who had benefited hugely from Respreeza. Niamh Kelly said that when Marion had come off the drug, she deteriorated rapidly. All of the patients I met had deteriorated rapidly once they had come off the drug. Anna Cassidy and Marion Kelly should never have died. That they did is a very sad reflection on all concerned - the company, the Government and the service provided. They died while there was an unedifying row taking place and the drug was lying in a warehouse. A third party is administering the drug as part of the compromise reached.

There are articles in The Lancet and The Lancet Respiratory Medicine which confirm the efficacy of the drug in slowing down the progression of emphysema in the cohort of patients in question. In the United States 6,000 people are on Respreeza, while the authorities in Germany, France and large parts of Italy reimburse the cost. As the European Medicines Agency has approved the drug, why has Ireland not done so? Professor Noel G. McElvaney in Beaumont Hospital has been the lead clinician in this area for quite some time. Why do we ignore his expertise? He is the only European member of the Alpha One Foundation. The Minister for Health has said he wants engagement and asked the HSE to engage with the company. It has not engaged. There has been no engagement. Will the Government intervene to ensure a physical meeting will take place between the company and the HSE to have the issue resolved and ensure reimbursement will take place? That is the only way the matter can be resolved. If it is happening all over Europe and the United States, why is it not happening in Ireland?

I thank the Deputy for raising this important issue. I do not have a note on it to hand, but I have some knowledge, given that the matter has been in the public domain and from discussions I have had with the Minister for Health about it. It is the policy of the Government to endeavour to ensure patients in Ireland will have access to new medicines. That has been our policy for a very long time, but we also have a duty to make sure medicines are effective and that the price taxpayers pay for them is reasonable in order that more people can be treated and more services made available to patients who need them. It has been set out in legislation for quite some time that the Government does not decide on which medicines should be reimbursed. That is decided by the HSE's national drugs committee which takes the advice of the National Centre for Pharmacoeconomics. There is expert advice which is put together by doctors, pharmacologists and economists - people who know about these things - who pass it on to the HSE's national drugs committee which then makes a decision on whether the cost of a medicine should be reimbursed. As the Deputy will be aware, decision on reimbursement is not the same as a decision on licensing. That is the process involved.

We have had some interesting discussions in recent weeks on when politicians should and should not intervene in a legal or statutory process. This is a statutory process, of which the Deputy will be aware, because the legislation was passed by the Oireachtas to set up the system the way it is. The experts in the National Centre for Pharmacoeconomics give advice and the HSE's national drugs committee decides. That is how it is done, but that is not to say Ministers cannot request that meetings take place. I will certainly speak to the Minister and ask him to encourage the company to engage with the committee. That would be the right course of action to take.

One very sorry feature of this affair is the way the manufacturer behaved. When a patient is put on a new drug, either as part of a trial or a compassionate programme, it is standard practice for companies not to withdraw the medicine. While a decision might be made not to extend it to new groups or new patients because of efficacy or the high cost involved, it has been standard practice for a very long time for companies to allow patients already on a medicine to continue to receive it. The company in question has behaved very badly and unethically in not providing the medicine for patients already on it. I hope the Deputy will join with me in echoing that sentiment.

The bottom line is that two people have died. The Taoiseach can talk about systems all he likes, but more people will die if the issue is not resolved. The system described by him is not working; it is failing. Professor McElvaney has been the lead clinician in this area for well over a decade. He has worked on the Alpha-1 gene and Alpha-1 deficiency and his expertise has been ignored. In respect of the Helsinki Declaration, about which the Taoiseach spoke, the company was wrong, but, equally, the Government and the HSE were wrong because the declaration is very clear. It states that "in advance of a clinical trial, sponsors, researchers and host country governments should make provisions for post-trial access for all participants who still need an intervention identified as beneficial in the trial". Our side - the Government - is not stepping up to the plate. It can act in a hands-off way all it likes, but that is not going to work. In respect of the insecurity the people in question face when they wait while nothing is happening, what is happening is inhumane. The Minister asked the HSE, but it has ignored him. There have been no meetings and no engagement. The company acknowledges fault and spoke to Niamh Kelly, the sister of Marion Kelly. It is willing and anxious to engage. All we are talking about are 21 patients on the island, but we go on about being hands-off and how it is this and that system. For God's sake, let us bring some humanity back to the health service.

On foot of the Deputy raising the matter, I will speak to the Minister for Health today and ask him to request further engagement involving the HSE's national drugs committee and the company. That is the appropriate way in which to respond on this important issue. I am very much attuned and wise to the humanity and human consequences of it.

Foilsíodh an tuairisc reathúil is déanaí den Bhord um Thionóntachtaí Cónaithe ar maidin. Cuirfeadh sé gruaim ar dhuine é a léamh, a Thaoisigh. Sa cheathrú cuid de 2017, bhí ardú 7.4% ar theach a fháil ar cíos.

Tá an cíos ar an mheán €1,054 ar fud an Stát. Tá an cíos ar an mheán €1,511 i mBaile Átha Cliath. I mórcheantar Bhaile Átha Cliath tá costas cíosa níos mó ná €1,100. Tharla sé seo fad agus a bhí do Rialtas i gcumhacht a Thaoisigh. In ainneoin do ráiteas rialta go raibh tú ag déileáil leis an bhfadhb. Tá gnáthdaoine i mBaile Átha Cliath, i gCorcaigh agus ar fud na tíre ag íoc suas le leath dá bpá ar chíos. Tá siad ag maireachtáil ar éigean. Seo iad daoine a éiríonn go moc ar maidin a Thaoisigh. Oibríonn said go crua. Ba mhian leo airgead a sholáthar dá gclanna. Tá éispéis acu. Ba mhaith leo plean a dhéanamh don todhchaí ach ní féidir leo. Tá sé scannalach ach ní ábhar iontais é de bharr thaifead do Rialtas ar chúrsaí tithíóchta.

This morning's quarterly report from the Residential Tenancies Board makes for very grim reading. Average rent levels in Dublin, the greater Dublin area and across the State are utterly scandalous. Yesterday I raised with the Tánaiste the issue of the working poor or the just-getting-by class, as I described them. I set out for him in the clearest way the manner in which these workers and families were struggling and today these scandalous rent figures have been published. They reflect the fact that the Government's stated ambition to achieve rent certainty or affordability is clearly failing. Its policy is failing. That average rent across the State is €1,054 is a cause of shame and disgrace. It is unaffordable for working families, people at work who get up very early in the morning, work very hard and have the modest aspiration of having a secure roof over their heads. What is the Government going to do? The situation is clearly not sustainable. When will the Government introduce real rent certainty?

Gabhaim buíochas leis an Teachta as a cuid ceiste. Tá innéacs náisiúnta cíosa an mBord um Thionóntachtaí Cónaithe le foilsiú inniu don ceathrú deireanach de 2017. Taispeánann sé gur ardaigh cíosanna príobháideacha 6.4% ar fud na tíre i gcomparáid leis an tréimhse 12 mhí chéanna in 2016. Mhoilligh an ráta fáis le gnáthchíosanna a ardú 1.1% idir mí Dheireadh Fómhair agus mí na Nollag 2017 i gcomparáid le 2.5% idir mí Iúil agus mí Mheán Fómhair 2017. I am very aware, like everybody on this side of the House, of the pressures people are under when it comes to rising rents. The Deputy referred to people who get up early in the morning, are just about managing and have to work very hard to cover the cost of rent, after which they have to meet other costs such as child care, as well as the general cost of living. People face difficulties in trying to pay rent, while at the same time trying to save money to buy their first home. I do not know if the Deputy had a chance to listen to "Morning Ireland" this morning on which the head of the Residential Tenancies Board spoke about the figures. She spoke from a very informed and balanced point of view. I encourage people who are interested in the facts to listen to the interview because it was very informative.

The index shows that in the fourth quarter of 2017 rents rose by 6.4% across the country. The rate of increase is slowing. The figures show that standard rents increased by only 1.1% in the fourth quarter of 2017, compared with 2.5% in the third quarter. They indicate that in Dublin, for example, rents are increasing at their lowest rates since 2013. That indicates two things to me. It indicates that the market is beginning to stabilise and that what people are willing and able to pay is much closer to what landlords are able to charge. It also shows that the rent pressure zones are starting to work. Of course, these are new tenancies and for new tenancies, rents have increased by 6.4% in the last year and that rate is slowing. For existing tenancies, the rate of increase, with some exceptions, is 4% or less.

Tá sé seo ar fad cloiste againn cheana féin. The Taoiseach has sung that song previously. It is very alarming that he is simply satisfied that the runaway levels of rent inflation have started to abate. It seems, in the Taoiseach's mind at least, that the mission has been accomplished. In Dublin average rent stands at €1,511. As it happens, I heard the interview to which the Taoiseach referred and the woman in question was very well informed, but let me tell him who is even better informed. The best informed people on this issue are the families and workers who are expected to find over €1,500 simply to cover their rent. By the way, they are many of the same people who are in insecure work, on low pay and up early and hard at it and simply cannot make it.

The Deputy's time is up.

All they get from the Government is a recitation of statistics and a deaf ear. That is not good enough. The Taoiseach should recognise that the Government's policy is failing, unless he believes it is acceptable for the average Dubliner to have to find in excess of €1,500 just to cover the rent. If that is his view, it is not one I share with him. I again put it to him that we need real rent certainty and affordability in Dublin and across the State.

I have not sung the song before because the statistics are quite different from the ones we have seen in recent years. The numbers show - the Deputy brought up the statistics first - that there was an increase of 1.1% in the last quarter of last year and that the annual-----

It is the annual increase that matters, as the Taoiseach knows.

It is still lower by 3 percentage points compared with the figure for 2016.

It is over 4%-----

It is lower than it was in 2016 by 3 percentage points.

It is 29% in Sligo.

Let us have order for the Taoiseach, please.

Stop misleading the Dáil.

The Deputy is misleading the Dáil.

The figures which Sinn Féin has brought up and therefore wishes to discuss show that in Dublin there was the lowest annual increase since 2013. Therefore, I certainly have not been able to sing this song previously because it is four or five years since it would have been possible to make that statement. Notwithstanding this, the Government is acting. We have already introduced the rent pressure zones by which most tenants are covered and which ensure that, except in some exceptional circumstances, rents increases are lower than 4%. In addition, other actions involve strengthening the enforcement powers of the Residential Tenancies Board and new legislation targeted for publication this term which will make it an offence to break the RPZ guidelines.

In addition to that, other actions also involve strengthening the enforcement powers of the Residential Tenancies Board and new legislation targeted for publication in this term will make it an offence to break the RPZ guidelines.

This is World Down Syndrome Day and I know that the Taoiseach will want to join me in sending good wishes to all members of the Down's syndrome community and their families in Ireland and throughout the world. I wish I could say services for people with Down's syndrome and other intellectual disabilities were even adequate in the State, but, sadly, they are not. Under the Disability Act 2005, the assessment of need must begin no later than three months after receiving a completed application form and be completed no later than three months after the date it begins. A constituent of mine who was told that her daughter would have to wait 12 months for an assessment of need made a complaint to the disability complaints officer. At the time she had complaint No. 1111 about the assessment of need process and was told that there was a five to six-month delay in even responding to complaints. Is that right in this day and age? The child in question was referred in May 2016 for an assessment of need and there is no sign of any such assessment coming down the tracks. It is likely that it will be May of this year before the child is assessed, which is truly shocking. Recently I received two separate telephone calls from parents whose children were attending the child and adolescent mental health services, CAMHS, in south Tipperary suffering from severe social anxiety and other mental health issues.

These children have been referred to the early intervention and disability services team for an assessment of needs but they have been told to expect delays of 12 to 18 months. Can the Taoiseach imagine those households, the anxiety, pressure and stress on the parents? These children were due to start secondary school in September and have no services. Even the fact they have received urgent referrals from CAMHS should be sufficient to ensure they are seen to but that is not sufficient. There are major issues, even after the assessment, where children who have been assessed are left waiting for occupational therapy, speech and language therapy and physiotherapy among other services. What is the Government doing to address this? Along with the Minister of State, Deputy Finian McGrath, it ratified the UN convention last week. I was told by the same Minister of State that a major reconfiguration of the therapy resources for children with disabilities, aged up to 18 years, was well under way. The national programme, Progressing Disability Services for Children and Young People, from zero to 18, was supposed to bring staff from different services providers together into children's disability network teams. It has not happened. Will the Taoiseach give us some assurance that this will happen? When will it happen? Is there any point to ratifying conventions and having Disability Acts passed if we do not put our money where our mouth is and put the people in place to deliver these services?

I thank the Deputy for raising this question and reminding us of the day that is in it. I am not in a position to comment on individual cases. I do not have the information to hand and, for reasons of privacy, I should not do so anyway. If the Deputy wants to pass that on to my office or that of the Minister of State with responsibility for disability affairs, I will certainly have it examined. We absolutely acknowledge that there are unacceptable delays for people waiting for their assessment of needs. With regard to what we have been doing, to give a few examples, the Deputy mentioned that after decades of delays under many previous parties that served in government, we have now passed a Dáil resolution to ratify the UN Convention on the Rights of Persons with Disabilities. The Minister of State, Deputy Finian McGrath, will travel to New York to deposit the instrument of ratification in the period ahead. We also made a major change relating to medical cards. The Deputy will know that for years, particularly when other parties were in power, people with disabilities, particularly children, had to fight for their medical cards. We changed the law last year to ensure that any child with a severe disability in receipt of the domiciliary care allowance had a medical card as a right, irrespective of their parents' income. Some 10,000 additional medical cards were provided that way and 40,000 children no longer faced reviews of their medical cards. The Deputy will recall that the Government led by the party opposite took €11.50 a week from people with disabilities and carers. We have started to reverse those cuts. The first reversal was last year and the second reversal will happen next week, when there is a €5 per week increase in the disability allowance and carer's allowance. We intend to fully reverse those cuts to people's welfare payments in the next budget, and more. We fully reversed the cuts to the respite care grant and, later this year, we will extend the doctor visit card to all carers in receipt of carer's allowance.

The Taoiseach might restore their grant while he is at it.

That answer is pure useless, toothless and fruitless, for that matter. Instead of a €5 million spin machine, would the Taoiseach install mirrors in his office and get a gramophone that will tell him that he is in power, in government, that it was not like that when he got here, that he has been in power for seven years now and should stop blaming the past for everything? He should have someone to pinch him every day to remind him that he is in power and should not be tweeting about something else. He is not even remotely engaged with the people. There are over 1,100 constituents in Tipperary alone waiting for these services. When will the Minister of State put in place psychotherapists, occupational therapists and others? Going to America will not fill many of those positions. In Clonmel alone, those vacancies have been compounded and the dreadful situation in south Tipperary clearly needs to be addressed urgently. What is the HSE doing to ensure that the vacancies in the intellectual disability services are being filled? I suggest that it is doing nothing. It is time for the Taoiseach to get real, cut out the spin and get some substance into his Taoiseach-hood before it passes him by. The people will not be interested in spinning when he goes out to knock on the doors. They will be waiting in the long grass and the grass will not be cut either.

I see the Deputy got his speaking points from the Fianna Fáil press office this morning.

I do not have that privilege.

Well done on working on those lies. The Deputy is correct that I have been in office for seven months-----

Seven months as Taoiseach and seven years as a Minister.

The Taoiseach has not done much in seven years. He is a bad case. Someone should take him away.

I have given the Deputy many examples of the kinds of things that the Government has done in the last seven years, such as a major increase in funding for disability services, the almost total reversal of the welfare cuts made by Fianna Fáil for people with disabilities, and the extension of medical cards as a right to children with severe disabilities. They are very real things which have really made a difference for real people. We have targeted three things we particularly want to do this year with regard to disabilities. The first is a significant improvement in respite. Some 12 new respite houses will open across the country. We are confident that we will get them all open through the course of the year. The Deputy will know that respite is a lifeline for families. Sometimes, the fact that they can get some respite keeps them going.

I thank the Taoiseach. His time is up.

We will also extend legislation to extend free general practitioner care to everyone in receipt of carer's allowance. At long last, we will ratify the UN Convention on the Rights of Persons with Disabilities.

On a point of clarification-----

No. Tá sé críochnaithe.

I do not know where the Fianna Fáil press office is. They do not let me in there anymore.


No one in the press office is upset about that.

De réir mar a thuigim, tháinig an Taoiseach isteach sa Dáil aréir agus chuir sé in iúl gur polaiteoir é a chuireann béim ar fhreagraí díreacha. Táim ag tnúth le freagraí díreacha anois. Táim ag díriú isteach ar chúrsaí meabhairshláinte. Tagaim ó chathair atá ag fanacht le hionad nua. Tá ionad síciatrach ann. Tá 45 leaba istigh ann. Tá níos mó ná 50 othar san ionad sin. Chomh maith leis sin, tá cuid de chosmhuintir na cathrach páirteach i bpatról slándála ag iarraidh daoine a choinneáil ó na huiscebhealaí de bharr go bhfuil sé ar intinn acu lámh a chur ina mbás féin. Sin an cúlra atá agam ón gcathair.

An pointe ginearálta atá á dhéanamh agam, agus an cheist atá á cur agam, ná cá bhfuil an t-athbhreithniú ar A Vision For Change? Sin plean forásach cuimsitheach. Ba é an tréimhse ama a bhí i gceist ná 2006 go 2016 - tréimhse deich mbliana. Insan fhís sin bhí chuile rud - idir an fhís agus na rudaí a bhí le déanamh. Anois táimid in 2018 agus, in ainneoin na ngeallúintí uilig mar gheall ar athbhreithniú, fós níl athbhreithniú againn. An rud atá léite agam ná athbhreithniú ar litríocht idirnáisiúnta ó thaobh chúrsaí meabhairshláinte de. Thóg sé sin dhá bhliain agus 12 seachtain. An dáta atá ar sin ná mí Feabhra 2016. Thóg sé go dtí Iúil 2016 é sin a fhoilsiú. Tá sé foilsithe anois agus táimid fós ag fanacht ar athbhreithniú ar an doiciméid A Vision For Change. Tá sé ráite linn go bhfuil grúpa maoirseachta - nó oversight body - bunaithe agus tá duine i gceannas air, ach dhá bhliain agus trí mhí tar éis an phlean sin a bheith críochnaithe níl athbhreithniú fós againn.

Tá a fhios agam nach bhfuil an Taoiseach ró-thógtha le miotas so níl mé ag súil le freagra indíreach. Ba mhaith liom a fháil amach go díreach stádas an athbhreithnithe sin. Cá bhfuil sé? Cé atá i gceannas? Cé mhéad cruinnithe a bhí ag an ngrúpa maoirseachta seo? Cén scála ama atá i gceist ag an Rialtas maidir leis an athbhreithniú atá geallta? I mo thuairim féin, níl gá le athbhreithniú mar tá sé ráite gurb é an t-aon fhadhb a bhí leis A Vision For Change ná nár cuireadh é i bhfeidhm.

Gabhaim buíochas leis an Teachta as a cuid cheiste. Tháinig an coiste maoirseachta maidir leis A Vision For Change le chéile i mí Dheireadh Fómhair 2017 chun an straitéis ar mheabhairshláinte - A Vision For Change - a athnuachan.

Aontaíodh creatlach oibre a chinnteoidh go gcríochneofar obair an choiste maoirseachta roimh dheireadh na bliana. The A Vision for Change oversight committee was convened in October 2017 with the objective of updating the A Vision for Change mental health strategy. A work plan has been agreed and will ensure that the work of the oversight group will be completed before the end of the year. The priority considerations of the oversight group include but are not limited to primary prevention, early intervention and positive mental health; integration of care and delivery systems between primary and secondary services; development of e-mental health responses; workforce planning, forecasting and skill mix, including mechanisms to attract and retain staff; the emerging needs of vulnerable groups such as people with comorbidities and specialist needs, as informed by the relevant programmes; the development of research data and evaluation capability to ensure achievement of best mental health outcomes can be demonstrated with the resources available; and proposing policy changes or enhancements that will benefit all those engaged with mental health services, with a particular emphasis on social inclusion and the needs of vulnerable groups, with the focus on reducing stigma and discrimination. The oversight group is determined that its work will focus on developing measurable outcomes and has emphasised the importance of stakeholder and focus groups in the formation of final recommendations. Those consultations are anticipated to commence in the near future. Subgroups have considered how best to build on existing policies and resources and have agreed there should be a focus on identifying gaps in current policy.

Gabh mo leithscéal, ach níor thuig mé an cheist iomlán. I did not pick up all the question. Cén ionad? Cén áit? B'fhéidir gur ionad i nGaillimh atá i gceist. I am sorry, but I did not quite pick it all up.

Tá mé ag déanamh trácht ar an ionad síciatrach chun cé chomh dona is atá rudaí ar an talamh a chur in iúl.

I bPáirc Merlin-----

-----nó in ospidéal an choláiste?

San ospidéal ginearálta. B'fhéidir go mbeidh an Taoiseach in ann breathnú ar an áit seo, ina bhfuil 45 leaba agus, de réir mar a thuigim, 51 othar. Ní féidir an t-ionad nua a oscailt de bharr easpa foirne. Ba mhaith liom dul ar ais go dtí mo chéad cheist. Bhí mé ag súil le freagra díreach. Cén uair a bheidh an t-athbhreithniú críochnaithe? Tá ceist eile agam. An bhfuil na tuarascálacha léite ag an Taoiseach? Níl gá le athbhreithniú eile. Bhí an tuarascáil a d'fhoilsíodh i mí Iúil 2017 ag caint faoi "light refresh" - b'shin an méid - ós rud é go raibh chuile rud clúdaithe in A Vision for Change. Níl aon gá le haon rud eile ach A Vision for Change a chur i bhfeidhm. Tá gá le beart leis an straitéis sin a chur i bhfeidhm. Tá sé seo ráite ag na haltraí síciatrach, ag an gCoimisiún Meabhair-Shláinte agus ag chuile dream, ach tá an Taoiseach fós ag caint faoi tuilleadh athbhreithnithe.

I do not have any specific information on the psychiatric unit in Galway but the Minister of State at the Department of Health, Deputy Finian McGrath, who has responsibility for mental health and older people, will revert to the Deputy with a detailed response. In terms of the issue more generally, the A Vision for Change review will be completed by the end of the year. We look forward to doing that. As the Deputy is aware, over 70% of the staffing need identified in the existing A Vision for Change document has been achieved and we are looking at new and more modern ways to deliver mental health online, with trials being progressed to overcome some of the staffing challenges. The budget for mental health services has significantly increased by almost €200 million since 2012, from €711 million to €910 million, a 28% increase. We have committed to a further increase of €55 million in 2019.