Topical Issue Debate

Cancer Services Provision

Deputy Billy Kelleher

I recently received correspondence from a sarcoma patient. I do not want to divulge the name of the patient even though she has subsequently raised the issue on social media. It is quite a distressing email in many ways. As the Minister should be aware, sarcoma is a fairly rare type of cancer. It accounts for about 5% of all cancers. We presently have about 200 to 250 patients who present with this disease every year in Ireland. This sarcoma patient has been attending a particular doctor in St. Vincent's Hospital. The doctor specialises in this type of cancer and has more than 300 patients in her care as we speak. Now, the patients are horrified to learn that this talented, hard-working and knowledgeable doctor is being let go by St. Vincent's. The patients feel that the proposed replacement, while vastly experienced, does not have the sarcoma expertise and also has a very busy private practice. In short, 300 patients are sceptical that they can get the same care and attention that they currently get.

St. Vincent's University Hospital, Dublin, is in the privileged position to have a wonderful resource at a centre of excellence with the treatment of sarcoma in its oncology unit through a particular consultant who is among the few worldwide experts in the treatment of sarcoma. This centre of excellence, which has been established over the past three years, has given treatment and hope to hundreds of sarcoma patients, enhancing survival rates and in many cases making survival possible where previously little hope was given. The patients feel that this kind of expertise in such a rare cancer takes years and years of research and experience. Regrettably, this is about to change when the contract of this invaluable resource is to be terminated.

The patients do not seek to comment on the contractual issues of any member of the HSE, but to highlight how the loss of this expert resource will impact on the care and treatment in the future. This level of knowledge, experience and expertise of sarcoma cannot be replaced by an expert in another field of cancer. Yet, it seems that this is about to happen. Patients are frightened for the future. One e-mail I received described the feeling of having finally found a place that feels safe and offers so much hope, only to see it about to be taken away, not just from the 300 of today's sufferers but from the sufferers of next year and the year after. They are frightened and they want to keep this particular oncologist expert in sarcoma. If we continue with her employment, the patients are confident that we will see the survival rates improve to secure the future lives of many children and young adolescents who are about to embark on lives they have every right to enjoy.

The patients that have received excellent treatment in St. Vincent's are very concerned that this particular expert in the area, who has built up a wealth of knowledge and experience over many years, will have her contract terminated shortly. They do not believe that the replacement can bring the same level of support and service that they require and need for what is a very challenging disease and illness. It is life-limiting in many cases. I recall the e-mail I received that spoke of having finally found a place that feels safe that is now about to be taken away.

Minister for Health (Deputy Simon Harris)

I welcome the opportunity to speak about sarcoma services at St. Vincent's University Hospital, Dublin. I thank Deputy Kelleher for raising this important matter. Sarcomas are rare malignant tumours that arise from transformed cells of the connective tissues, such as muscle, fat, cartilage or bone. I acknowledge that people who have been diagnosed with sarcoma, or any other serious illness, will of course be concerned that they receive the best care and treatment. That is a concern that I share.

As the Deputy said, services for the management of these patients with sarcoma are currently provided in St. Vincent's Hospital as well as in Cork University Hospital. The multidisciplinary team in St. Vincent's Hospital has all of the relevant specialities represented, including surgery, medical oncology, radiation oncology, radiology and pathology.

Recently, a consultant medical oncologist was employed by St. Vincent's hospital on a locum contract to provide cover for one of the other consultant medical oncologists who had taken on the role of chair of the Irish clinical oncology research group. This consultant has now returned to his post at the hospital. The reason for employing the locum has now ceased. That locum was only ever filling a role on a temporary basis while the consultant medical oncologist took up the role of chair of the research group. I have made inquiries about this because I have been contacted by a number of people and I am assured by the HSE that care for patients undergoing treatment for sarcoma cancer at St. Vincent's Hospital will not be compromised in any way and their management will be provided by one of the hospital's full-time oncologists.

In relation to sarcoma services nationally, a national clinical lead in soft tissue sarcomas has been appointed to oversee the services for patients with sarcomas. All Irish patients with sarcoma have their cases presented and discussed at one of the two sarcoma multidisciplinary teams. The HSE's national cancer control programme, established in 2007, has re-organised and expanded cancer services to achieve better outcomes for patients and has moved the system of care to one that consolidates cancer treatment in larger centres with multidisciplinary care and decision-making. These services are provided regardless of income, age and location.

Long-term survival for all cancers has improved markedly with five year survival rates increasing from 57% for patients diagnosed between 2003 and 2007 to 61% for patients diagnosed between 2008 and 2012. It is expected that survival rates will increase further due to the combined approach of screening, symptomatic detection and improved treatment.

My Department is currently working on a new national cancer strategy for the next decade. This will build on the progress made through the implementation of the two previous strategies. Areas of focus are likely to include prevention, early diagnosis, further improvements in treatment, rare cancers, survivorship and high quality, patient-centred care. I intend to publish the new strategy in the coming months.

As I said at the outset, I want to acknowledge the concerns people who have been diagnosed with sarcoma have in relation to their care. However, I wish to pass on the reassurances I have been given by the HSE that there will be no reduction to the service provided by the St. Vincent's Hospital's oncology team. I welcome the opportunity to clarify this issue.

Deputy Billy Kelleher

There are two issues that arise from the Minister's reply. The first is that the reason for employing the locum has now ceased because of the return of the other consultant oncologist. The point I am trying to make on behalf of the patients who have contacted me is that the locum that is currently there has provided a wonderful contribution and rather than losing that expertise, the locum could be maintained and the returning consultant oncologist I am quite sure would find plenty of other work in St. Vincent's.

On a comparative basis, the criteria for the care of sarcoma patients in England and Wales, for example, reads quite long compared with what we are probably offering in this country. There is a sarcoma medical group consisting of all specialities including surgical, orthopaedic and medical oncologists, radiologists, pathology and oncology nursing as well as rehabilitation services. At least one group member belongs to a sarcoma-oriented medical organisation, such as the Connective Tissue Oncology Society. Publications are produced concerning sarcoma in peer review journals. Sarcoma conferences take place where sarcoma groups meet at least once per month to discuss patient issues. At least 50 sarcoma patients are seen per year. There are other issues such as MRI, imaging and PET scans, patient enrolment in clinical trials, strong support of personnel such as social workers, pathologists and psychiatrists and sarcoma support groups where desired.

The doctor that I am speaking about has published in a huge number of journals that prove her expertise in the treatment of this disease. I know the Minister is not questioning that. She has contributed to 13 publications and has 42 citations. While there is an assurance given that the service will not be reduced, what we want to try to do is enhance the service. If the locum was maintained, rather than maintaining the service, we would actually be enhancing the service. I hope the Minister will convey the views that I have conveyed to him as those that have come from the patients themselves.

Deputy Simon Harris

I will convey Deputy Kelleher's views and the views of the patients who have contacted him to the HSE. They are similar to the views expressed by patients who have contacted me. From what the Deputy told the House and from what I am informed by patients as well, there is no doubt that this locum did an excellent job. That is beyond question. The locum clearly had a positive impact on patients and on patient care. I am grateful for that. In the interests of clarity, this was always a locum position. The locum was filling in for another consultant oncologist who had undertaken a prestigious role as chair of the research group. It was always the understanding that the locum, by nature of being a locum, would carry out the duties of the consultant oncologist until that consultant returned to his post. He has done that. The multidisciplinary team in St. Vincent's University Hospital has all of the relevant specialties represented, including surgery, medical oncology, radiation oncology, radiology and pathology. The hospital has reassured the national cancer control programme that patients' ongoing care and management will be provided by the hospital's oncology team and will not be compromised in any way during the hand-over period.

However, I accept the broader point made by Deputy Kelleher, which is valid, as to whether there is a case to be made for an additional consultant post with a special interest in the area of sarcoma. I have raised this with the HSE and have been assured by it that consideration is being given to appointing a permanent consultant medical oncologist with a special interest in sarcoma. I will revert to the Deputy on it, given that the HSE is actively considering it. Also, he referred to international comparisons. Since the establishment of the Irish Sarcoma Group in 2014 we have strengthened and developed our national sarcoma services. International links have now been developed with specialist sarcoma centres in the UK, which the Deputy mentioned, and in Germany. These international links are important to ensure we have best practice.

Nursing Homes Support Scheme

Deputy Caoimhghín Ó Caoláin

I thank the Ceann Comhairle for selecting this topic.

I seek a commitment from the Minister for Health to facilitate a right of access to the nursing home of their choice for older people in need of long-term residential care whose home address is on this side of the Border but whose nearest or preferred nursing home is situated north of the Border. Prior to the introduction of the fair deal scheme older people in need of residential care could take up unhindered residence in nursing home facilities in the Six Counties. This is an important issue for people in my constituency of Cavan-Monaghan, particularly for those from communities that do not just run along the Border strip but straddle it, just as they have straddled the inter-county lines over many generations.

Before the fair deal, subvention travelled with the older person. With the advent of the fair deal a partition descended once again in our midst, turning lifelong friends and neighbours away from each other and forcing older people, whose residence is located south of the Border, to look to often more distant locations from their home for residential care in their own county or in neighbouring counties. This is discriminatory and grossly unfair. It also ignores the important role these facilities north of the Border have had and could play again in helping to meet the ever growing demand of our ageing population.

There are excellent nursing homes in County Monaghan, both public and private, but we do not have sufficient capacity. However, the core issue is the right of choice and access, if preferred, to a nursing home that is closest to one's own home, family, extended family, friends and neighbours. This is not an unreasonable request. We must revisit the terms of the nursing homes support scheme, the fair deal, to provide for older people in the circumstances I have described, respecting their and their families' choice and wishes. Whatever the outcome of the referendum today in Britain and in the North, in this jurisdiction we should be lifting borders, not imposing them.

I appeal to the Minister to respect the rights and wishes of communities, families and older people in Border areas. They do not see their location as peripheral. They see only the hills, roads and features of their area that go way beyond an artificial Border that has always failed to drive them apart from family, friends and neighbours in childhood, adolescence and adulthood. It should not drive them apart in their later and dependent years. I ask the Minister to do the right thing and not to offer excuses for inaction. People want and deserve voices in politics that are solution driven. Is the Minister, Deputy Harris, such a voice?

Deputy Simon Harris

I thank the Deputy for raising this issue. I do not offer excuses as a cover for inaction but I am duty bound to point out the factual and policy considerations relating to this issue that must be discussed. Like the Deputy, I hope there are not more borders in place tomorrow on the island of Ireland and that the outcome of the referendum on Britain's place in the European Union does not pose additional difficulties. There have been many good developments in the cross-Border development of our health service in recent years and I am eager to continue that.

I am taking this debate on behalf of my colleague, the Minister of State with responsibility for older people, Deputy Helen McEntee, who is unavailable. Government policy is to support older people to remain in their own homes and communities for as long as possible. There will, however, always be a cohort of older people who require a quality long-term residential care option. The nursing homes support scheme, or fair deal as it is commonly known, is a system of financial support for those assessed as needing long-term nursing home care, regardless of their age. Participants contribute to the cost of their care according to their means while the State pays the balance of the cost. The scheme aims to ensure that long-term nursing home care is accessible and affordable for everyone and that people are cared for in the most appropriate settings.

The applicant is free to choose any public, voluntary or approved private nursing home in the State. Of course, the home must have availability and be able to cater for the applicant's particular needs. The scheme has a net budget in 2016 of €940 million. This represents an increase of €43.1 million on the 2015 outturn. It is expected that the scheme will provide financial support to 23,450 clients on average per week in 2016.

The scheme has a statutory basis and is governed by the Nursing Homes Support Scheme Act 2009. It replaced the nursing home subvention scheme that had been in existence since 1993, and the system of contract beds and long-stay charges in public nursing homes. To be eligible to apply for the scheme, an applicant must be ordinarily resident in the State. This means that they are living in the State for at least a year or intend to live in the State for at least a year. The nursing homes support scheme does not extend to homes in Northern Ireland and it would not be possible to include facilities outside of this jurisdiction in key elements of the scheme. For example, prices payable under the scheme are negotiated by the National Treatment Purchase Fund. Such facilities are also subject to regulation by the Health Information and Quality Authority, HIQA, which has no jurisdiction within Northern Ireland. This issue was given careful consideration before the scheme was introduced in 2009. The decision not to extend the scheme to Northern Ireland was taken by the Government of the day on the basis of legal advice received from the Office of the Attorney General.

While my response is somewhat negative, the rationale for it is based on the legal advice of the Attorney General to the Government of 2009. One of the issues is how one can ensure qualities and standards when HIQA does not have jurisdiction in Northern Ireland. There are also the other points I outlined. That said, I have had an excellent conversation with my counterpart in Northern Ireland, the Deputy's party colleague and new Minister for Health, Social Services and Public Safety, Michelle O'Neill. We had a constructive conversation last Monday about areas of cross-Border co-operation. There is a great deal being done for children with heart conditions and there are plans to do more regarding organ donation. I would welcome the opportunity to discuss a range of issues with the Minister, Ms O'Neill, and I look forward to meeting her in Dublin on 4 July. I will be happy to discuss this matter with her, but I must sound serious caution in terms of the difficulties that currently exist.

Deputy Caoimhghín Ó Caoláin

I knew the Attorney General would be cited in the Minister's reply. Indeed, it was the single line response I received to a recent parliamentary question I tabled on this issue.

It is most unsatisfactory. I live very close to the Border but there are people who live even closer who naturally gravitate towards the little community hall, nursing home facility, church and all the other facilities that make up an identifiable unique community. They want to be able to stay with their friends and relatives - people with whom they have spent a lifetime engaging with in all the different facets of life - yet they are being forced to part because they cannot afford to pay the entire cost of their care, the fair deal being an essential element for access.

We need a "can-do" situation regarding this matter. This anomaly or discriminatory situation has only arisen in the past seven odd years and I believe it is essential that it is made a priority for the engagement referred to by the Minister. I welcome the planned engagement with the Minister of Health in the North of Ireland, Michelle O'Neill, MLA, who is a very experienced Minister who was formerly Minister of Agriculture and Rural Development in the last administration in the Northern Assembly. Leaving aside political differences and the jibing that can take place in this Chamber, I am appealing to the Minister because I could name these people. They are people I am thinking about as I stand before him making this appeal. It is in their interests and those of their families that they are allowed to remain where they want to be in their final years for whatever time they are granted and that their loved ones and those who would visit them have reasonable access. This is part of the essential care and provision for people placed in long-stay residential facilities.

I will not use a battleaxe approach with the Minister over this. I urge him to recognise the reality of the constituents about whom I am thinking. The Minister may not be able to identify with them personally because it is not the area he represents but I ask him for the empathy that will open the door to resolve this vexed matter.

Deputy Simon Harris

I am the Minister for Health for people in all parts of this country so I am very sympathetic to the point the Deputy is making on behalf of his constituents. However, I wanted to highlight the challenges and difficulties we face in this regard. These are not new challenges or difficulties and they do not come as any great surprise to Deputy Ó Caoláin as an experienced Deputy in this House because they were highlighted, considered and debated in this House in 2009. Seven years later, he is still highlighting and debating them with me this evening. These issues were considered in great detail by the Government of the day and the Attorney General in 2009 and I am sure they were subjected to a significant debate in this House with different views on different sides.

The issues are not straightforward and simple. If they were, this anomaly, as the Deputy calls it, would never have arisen in the first place. I will engage with the Minister of Health in Northern Ireland, Mrs. Michelle O'Neill, MLA, on this issue as one of a number of issues, some of which have been identified by her and others by me, that we would like to discuss as part of how we can support each other's health systems and support citizens on the island of Ireland in terms of ensuring that they can get the best outcome from the health service. When I meet the Minister in Dublin in July, I will certainly raise this issue with her, as, I am sure, Deputy Ó Caoláin will as a colleague.

I am more than happy for discussions to take place but I am duty bound to highlight the challenges in terms of the national treatment purchase fund and changes that have occurred in recent years such as the development of HIQA, which was not an issue in previous years, and the fact that we must ensure proper quality and safety for patients. HIQA does not have jurisdiction in Northern Ireland. I know this would be a concern for the Deputy who has been a great advocate of patient safety in this House. We need to get this right. I will undertake to engage with the Minister on the issue and to keep in contact with the Deputy. I am not unsympathetic to the point he makes but I do not have a ready-made solution for it this evening. However, I will certainly engage with my counterpart in Northern Ireland and keep in touch with the Deputy.

Sitting suspended at 7.25 p.m. and resumed at 7.30 p.m.

Dáil Éireann díospóireacht - Thursday, 23 Jun 2016