I welcome the Minister of State.
Commencement Matters
School Therapy Services
I thank the Minister of State for being available this morning to deal with this matter. It relates to Scoil Cara in Cork city. The school started off in 2011 with 30 students. It now has 72 students for 2019. This Commencement matter relates to children with special needs and the need for adequate services to be put in place. My question this morning is about the adequate provision of people who can provide therapeutic services. I understand that there is a certain guideline as regards the number of hours that should be made available for each child. The staffing levels at the moment are not adequate to provide that level of therapeutic services for these children. In fairness to them, parents are working very hard with the board of management and the principal of the school to make sure that the best possible education and support is provided for these students, but one of the key elements of the children's development is the provision of these services. I understand there has been a difficulty in getting the necessary support. I know this area covers two Departments in the sense that the Department of Education and Skills would be involved in respect of the school while the support services come under the Department of Health and the HSE. Can something be done to make sure we provide the adequate support services for these children? If we provide them now, when the children are very young, there will be huge long-term benefits. Long-term costs are also reduced when the services are produced at a very early stage. It is in that context that I am raising this issue with the Minister of State this morning. Raising it is urgent because it is important that no time is lost in providing these services.
I thank the Senator for raising this issue. On behalf of my colleague, the Minister for Health, Deputy Simon Harris, I am happy to provide an update to the House on therapeutic services in Scoil Cara junior school.
As the Senator may be aware, Scoil Cara is one of a number of primary schools for children with autism in Cork. It was established in 2011, as outlined by the Senator, following a decision to divide Scoile Triest into a junior cycle school and a senior cycle school. Scoil Triest now provides special education to children with autism and mild to moderate intellectual disabilities who are aged 12 to 18 years. Scoil Cara provides special education for children with autism and mild to moderate learning difficulties aged five to 12 years. Both schools are under the patronage of the Brothers of Charity. The multidisciplinary supports provided to pupils of Scoil Cara include two days of speech and language therapy and two days of occupational therapy. Alongside this, psychology and physiotherapy services are provided on referral. These multidisciplinary resources were assigned to the school when it was established with 30 pupils in six classes back in 2011. However, the school now has 60 pupils in ten classes and, unfortunately, the Brothers of Charity services have not been able to increase the level of multidisciplinary support to the desired levels over the years.
As the Senator will be aware, the demand for therapy services has grown alongside significant year-on-year increases in the number of children applying for assessment, including assessment for autism spectrum disorder and disability services generally. The HSE recognises that services for school aged children with disabilities and early intervention services are paramount and need to be improved and organised more effectively. This process is well under way nationwide. HSE disability services is currently engaged in a major reconfiguration of its existing therapy resources for children with disabilities into multidisciplinary, geographically-based teams as part of its national programme on progressing disability services for children and young people aged up to 18 years. The key objective of this programme is to bring about equity of access to disability services and consistency of service delivery with a clear pathway for children with disabilities and their families to services, regardless of where they live or the nature of the individual child's difficulties. Evidence to date from areas where this has been rolled out shows that implementation of this programme will also have a positive impact on waiting lists both for assessments and therapies. The HSE is working towards having the progressing disability services model in place in Cork by the second quarter of 2019. It is expected that this will facilitate access to therapies for all children with disabilities.
The Senator may ask a brief supplementary question.
I thank the Minister of State for his reply. I note that this programme is to be rolled out during the second quarter of 2019. I believe it is an area that should be given priority. It is very important for the children. One of the people providing therapeutic services in that school has retired or resigned and there has been difficulty in appointing a replacement. It is so important for the children. Any parent with a child with a disability works extremely hard to give that support to children. The parents are giving their support and I note that the Brothers of Charity have done a huge amount of work in this area over a long number of years. However, it is important the State gives the necessary support, especially when a school has made so much progress in a very short period in terms of expansion and the growing of services. The key element is the therapeutic service. We must ensure we have the level of service required and that it be put in place at the earliest possible date so that we do not have to wait until the third quarter for the roll out of the programme.
I appreciate the opportunity to address this issue. Anytime we focus on an issue such as this it is very welcome because it allows a very challenged HSE management and service to refocus and re-prioritise a particular service. I welcome the opportunity the Senator has given myself, the officials in the Department, the Minister for Health, Deputy Harris, the HSE officials and management in the Cork and Kerry community health services to refocus and reorient attention towards this issue. I appreciate the Senator's point about the second quarter of 2019 being quite a while away for a child who has a need today. Every day there is delay in the delivery of a service is to be regretted rather than celebrated. I will take his plea on board and reiterate it along the chain to see that we refocus and re-prioritise.
Funding for an additional 100 therapists for children with disabilities was announced in the budget and we look forward to that having an impact on the bigger, macro picture over time.
Medicinal Products Availability
I asked that the Minister come to the House so that I could echo my colleagues, Deputies Calleary and Lisa Chambers, and my Seanad colleague, Senator Conway-Walsh, in calling for the drug Spinraza to be made immediately available. Spinal muscular atrophy, SMA, is a group of inherited diseases of the motor nerves that cause very debilitating muscle weaknesses and wasting. It is life threatening, rare and the leading cause of death in infants and toddlers. There are 25 children in this country with this condition. It presents them with several burdens. They are wheelchair bound, suffer muscle recession and considerable pain and the day-to-day exercise of their lives is virtually impossible in things such as handwriting and other small things. I have met some of their family members. All they want is to give their children the best life they can.
Hope for these children comes in the form of Spinraza, the first treatment of its kind in the world. There is significant evidence from countries across the world, and from clinical trials, that Spinraza is changing children's lives significantly, slowing down muscle wastage and, in many cases, allowing muscle strengthening to occur which allows them to live a much more active, healthy life. Grace O'Malley from Robeen near Ballinrobe in County Mayo, along with her parents Paul and Lorraine, and other family members of those suffering from SMA are begging for access to this drug. They know it will not cure Grace but they also know from the CHERISH trial results, which outline the effectiveness of Spinraza, that these are the children who are most at risk of losing the muscle function which Spinraza has the potential to greatly manage and to improve Grace's condition and afford her some level of independence.
Earlier this year, Ireland entered an international alliance with the Benelux countries which was said would strengthen Ireland's hand in negotiations with big pharmaceutical companies. The Minister, Deputy Harris, hailed it as an agreement that would improve Irish patients' access to new and innovative drugs. I, like many others, am waiting to see the fruits of this arrangement. The Minister's repeated reference to the Netherlands and Belgium negotiating for Spinraza prior to Ireland joining the Benelux countries' initiative is misleading and confusing, considering the statement from Biogen on 20 September which said that in July 2018, Ireland was offered the same terms as other countries, regardless of the time of joining the initiative.
The latest information received by the families is that Spinraza has been referred to the rare diseases technical review committee. They have questions to which I would like answers. Who forms this committee? How does it differ from the National Centre for Pharmacoeconomics, NCPE, assessment? I understand that Professor Michael Barry is the head of the NCPE and the rare disease review committee, which raises a question about the impartiality of this whole process. As there is no new medical information to consider since the original dossier was presented to the NCPE, what exactly will it consider? The evidence will be the same as will the people. Will this review group engage with the patients? Has a timeframe been put on the assessments given the very serious nature of the disease?
I thank Senator Swanick for raising this matter.
Spinraza is indicated for the treatment of 5q spinal muscular atrophy, SMA, a disorder characterised by progressive muscle atrophy and weakness. I am mindful of the fact that access to potentially beneficial drug treatments is an important issue for all people with serious illnesses. I fully appreciate that SMA sufferers and their families face enormous day-to-day challenges in dealing with this progressive and debilitating condition.
Securing access to new and innovative medicines in a timely manner is a key objective of the Irish health service. The challenge is to deliver on this objective in an affordable and sustainable way. The Oireachtas has put in place a robust legal framework in the Health (Pricing and Supply of Medical Goods) Act 2013, which gives full statutory powers to the HSE to assess and make decisions on the reimbursement of medicines, taking account of a range of objective factors and expert opinion as appropriate. The Act specifies the criteria to be applied in making a reimbursement decision, which include the clinical and cost effectiveness of the product, the opportunity cost and the impact on resources that are available to the HSE.
In reaching its decision, the HSE will examine all the relevant evidence and take into account such expert opinions and recommendations that are appropriate, including from the National Centre for Pharmacoeconomics, NCPE. This ensures that each reimbursement decision is made on objective, scientific and economic grounds.
The HSE received an application for the reimbursement of Spinraza in July 2017 and referred it to the NCPE for advice. The NCPE conducted a health technology assessment on Spinraza and did not recommend reimbursement at the price sought by the applicant. The application for the reimbursement of Spinraza is currently being considered by the technology review committee on rare diseases and the HSE drugs group. These expert bodies are carefully reviewing the clinical effectiveness and cost effectiveness of the product in light of the prices being charged by the company which make it a very high cost treatment.
This is nothing personal but I am disappointed with the Minister of State's answer, which is pretty generic. What will the rare disease committee review? The information is exactly the same as that already received by the NCPE. The dossier is exactly the same, as are the patients and the medical evidence. That is not an adequate answer for people such as Grace and her parents. I have put four or five questions to the Minister of State and have listed them on a piece of paper that I will give to him because I sought specific answers to them. Why is this process being delayed? Why have the families heard nothing? When will a decision be made? Will the families be engaged with in this process because currently there is no engagement? I remind the Minister of State that a petition has been signed by more than 40,000 people. This may be an orphan drug, used in rare conditions by a small number of people in this country, but there is a far greater movement of people behind them who understand that price should never be an issue when it comes to children's lives.
Why has the process been delayed? Why are the families hearing nothing about it and will they be engaged with? I remind the Minister of State that this drug is being reimbursed in countries such as Romania, Slovenia, Slovakia, Cyprus, Lithuania and Croatia. It is time we showed some respect to this cohort of patients and reimburse this drug as a priority.
I think Senator Swanick understands better than most that it is not a decision for politicians. The House made that decision in 2013 when the Health (Pricing and Supply of Medical Goods) Act was passed by both Houses. It was agreed that politicians would not decide what drugs would be reimbursed and what prices would be paid to drug companies. I agree with that.
I do not think politicians should make those decisions. The Senator has a number of questions. I respectfully suggest he refer to the Health (Pricing and Supply of Medical Goods) Act 2013, which will answer each of his five questions, or at least four of them. If there are specific questions, it would be more appropriate to direct them to the HSE because neither I nor the Minister have any role or function in this process. That was a decision taken by the House.
The Senator said price should never be a barrier when it comes to the health of children. The State is not going to approach drug companies, which are part of a multi-billion euro industry, with that mantra and suggest price never a barrier in approving any drug. That would be reckless, irresponsible and dangerous in the extreme. As these are powerful multinational companies - multi-billion euro companies - that have a lot to gain, there is a healthy tension there that demands time and necessitates things being done properly and a process that is held up to scrutiny, transparency, clinical effectiveness and cost effectiveness because, as the Senator and all of us here are aware, there are many competing demands on the limited resources that are available to the HSE on an annual basis for the delivery of services.
This cohort of patients is very small. As Biogen has offered the drug for the same price as that in the Benelux countries, we would not be paying any excess.
Hospital Staff Recruitment
The Minister of State is very welcome. I welcome Professor Maura Adshead from the school of politics and public administration at the University of Limerick who is in the Public Gallery. As she is shadowing me for the day, it will be an interesting experience for both of us.
I am here to inquire about an update on the advertisement for a specialist MS nurse for University Hospital Limerick. We had this same debate last May where I was informed that the position would be advertised and filled. The report that was issued in March 2016 stated there should be three specialist MS nurses for any hospital that serves over 475,000 or close to 500,000 people. There is no specialist MS nurse in University Hospital Limerick. It is terrible for those who have been diagnosed with MS. The number of people diagnosed with the condition has increased in recent times. It is crucial that this position is filled as soon as possible. MS nurses are very helpful in terms of helping with the diagnosis, as well as helping MS patients with their medication and advice. Patients must contact a nurse in Cork or other parts of the country, which is not satisfactory. The report highlighted the fact that we need three specialist MS nurses in the mid-west but we currently have none. I am really disappointed because I was informed in May that the position would be advertised and filled very quickly yet there has been no advertisement to date so I would really like an update today.
I thank Senator Byrne for raising this issue in the House and giving me an opportunity to address it. I am advised that the UL Hospitals Group recognises the need for the appointment of a clinical nurse specialist post in neurology. The national clinical programme for neurology clearly outlines the resource requirements for the neurology service across the University Hospital Limerick site and nationally to achieve the best outcomes for neurology patients in line with best international practice. The neurology model of care also recommends the appointment of a clinical nurse specialist as part of a multidisciplinary team treating patients with MS. It is in this context that the UL Hospitals Group has taken the decision to prioritise the recruitment of an MS nurse. I understand a job application for this position has been finalised by the UL Hospitals Group for submission to the HSE national recruitment service.
It is timely for me to use this opportunity to update the House on developments with the model of care for neurology services. The national clinical programme for neurology has developed and published a model of care for neurology services, which provides a framework for neurology services to be delivered through an integrated service approach. It is intended that such services will be delivered in an efficient, equitable manner by supported, skilled professionals working in a multidisciplinary manner using a person-centred approach to care. The model of care promotes best practice in the delivery of neurology services by adopting key international standards and promoting support for evidence-based and research-led practice throughout the service. At the centre of the model of care for neurology is the role of cohesive and comprehensive multidisciplinary team care in the management of patients. The model envisages audiologists, nurses, occupational therapists, physiotherapists and other health and social care professionals working with patients and collaborating with specialist colleagues in providing optimal care for patients in the Irish healthcare system.
The purpose of the clinical nurse specialist post within this broader team is to improve and enhance the care of patients and their families by improving existing services and developing new services with regard to neurology and to assist overall in optimising the quality and continuity of care. The clinical nurse specialist will work as a key member of the multidisciplinary team in the hospital service providing physical, psychological and emotional support to neurology patients and their families. He or she will act as a liaison between community services, primary care teams and other agencies.
It is my understanding that the UL Hospitals Group will continue to work with the national clinical programme for neurology and is prioritising the recruitment of the clinical nurse specialist post within that context to progress the need for further strategic development of neurology services in the mid-west region.
I note the Minister of State has acknowledged how important the service provided by the MS specialist nurse is. The disappointment I feel is because something similar was said last May. It was said it would be prioritised. As we are midway through October, I seek a commitment from the Minister of State that he will keep up the pressure on the hospital group to advertise this post and have it filled as quickly as possible because, as the report stated, it is necessary to have three such nurses. This is only the first of those three nursing posts. We are six months on and we still have none. It is really important for MS sufferers and their families that this post be filled as soon as possible. I would like to see it filled tomorrow rather than this time next year. I would be very grateful if the Minister of State could give me a commitment that he will keep up the pressure on the hospitals group to fill this post as soon as possible.
I echo the Senator's welcome for Professor Maura Adshead from the school of politics and public administration at the University of Limerick, who is shadowing the Senator for the day. If I can tell the professor anything about her study for the day, one thing the Senator possesses, and she possesses many attributes, is consistency. I am on record previously as having said that it is one of my favourite attributes in any politician. We can all get very animated and exercised about individual issues but we tend to move on and drift more than we stay focused. It is timely that the Senator is being shadowed by an academic for the day on which I make that point. I thank the Senator for her consistency with regard to this issue. It is typical of her tenacity and determination.
HSE-speak and Civil Service-speak can be highly frustrating for us as politicians on many occasions. What does it mean that something continues to be a priority? We want timelines and deliverables. These are real people who are waiting for this service and want to have a nurse in place today rather than tomorrow. The commitment is that it will be progressed significantly by year end. Again, what does that mean exactly? As that is the frustration I share with the Senator, I will certainly take up the issue. In my role as Minister of State, with help from the Minister and his office, I will ensure I do justice to her prioritising of it in the House. I will ensure it receives attention back down the chain to ensure there is a timely conclusion of the recruitment process.
Services for People with Disabilities
I welcome the Minister of State, Deputy Jim Daly, who is a regular visitor to this House and sometimes brings good news. He might be aware that last Thursday was World Sight Day, a day on which an opportunity is taken to highlight issues relating to sight loss and the various complex challenges people with sight loss face. There are 40,000 people on waiting lists for ophthalmology procedures, which is a very high figure. I know that it will not be dealt with overnight but I hope we will see a downward trajectory in due course to help those who get into the system and engage.
More often than not, unfortunately, they get bad news. Sometimes it is children and sometimes adults. There must be mechanisms to assist them. The child of a lady from Mayo, Ms Natalie Cramp, was six months old when irregular movement was spotted when looking into the child's eyes, something that was done on a regular basis. An appointment was eventually secured with a consultant who advised that the child had a condition called nystagmus. As it happens, that is one of my own conditions. It took three years from that point for the family to be connected with the National Council for the Blind of Ireland, NCBI. That is the organisation which provides practical support for people with sight loss, puts programmes in place to advise them and connects them to low vision aids, low vision supports and peer counselling. That is particularly important for parents who discover their children have visual impairments. It can be traumatic. There is, however, a whole suite of supports available to assist people to come to terms with sight loss and deal with the challenges.
The issue I have is that it took nearly three years for somebody in the medical profession to connect Ms Cramp to the NGO that could give much support. That would not happen in the United Kingdom. There are what are known as sight loss clinics in the UK in all the major hospital groups. Over the last couple of years, NCBI has endeavoured to have a sight loss adviser appointed to most of the hospital groups in this country to engage with parents who get devastating news. They will also engage with adults who are told they are going blind or are losing their sight in a way that is going to have a life-lasting effect. If there is an adviser, at least people can get supports quickly. They can be equipped to come to terms, as best they can, with the new reality of their lives.
Some of the hospital groups in this country are very proactive in doing that but some are not. It should be compulsory that there is a sight loss adviser in all the hospital groups. I was very tempted to table an amendment to the Children's Health Bill 2018 to ensure it was enshrined in legislation that a sight loss adviser would be appointed to the national children's hospital when it is eventually built. I hope that will not be necessary and that it would happen as a matter of form. The quicker people get interventions, the faster and easier they can adapt their lives to dealing with their new reality. I often say we should get our eyes checked on a regular basis because the faster a deterioration is identified, and the quicker supports and interventions put in place, the better chance there is of eyesight being retained.
That extends to a situation where a person finds he or she has lost his or her sight. In order for his or her quality of life to be maintained as best it possibly can be - and it can be because there are plenty of supports - the sooner interventions happen from a mental health perspective and a practical perspective, the better. That is especially the case with young children. The quicker they get supports such as low vision aids and the faster they connect with the various suites of supports that are available, the better the chance they have of adapting to the reality they face for the rest of their lives. I sincerely hope the Government will see the logic of what I consider a practical step to connect the NGO structures and the various other structures when it comes to visually-impaired teaching services, etc. I await the reply of the Minister of State.
I thank the Senator for raising this issue and giving me the opportunity to provide an update to the House. The Government is committed to delivering disability services that are person-centred and putting those who need supports at the centre of our focus. We want to empower people to live independent lives by improving access to the services they require. The 2016 census figures indicate 54,810 people, or 1.2% of the population, have a sight-related disability. This represents a 6% increase since 2011. The people in question have the right to the same access to healthcare services as everyone else.
In 2015 the Health Service Executive published "Guidelines on accessible health and social services". The guidelines were developed by the HSE in consultation with the National Disability Authority to give practical guidance to all health and social care staff about how they can provide accessible services to all. The key message in these guidelines is ask, listen, learn, plan and do. Communication with patients is key to being able to plan appropriate supports to improve accessibility. From access to buildings to managing appointments and communicating clearly with patients, the HSE is committed to ensuring that access to services is a priority.
Within acute hospitals and across the hospital groups, access officers support staff in dealing with matters where additional support or guidance is needed. Where gaps exist, access officers are working to address systematically the gaps and ensure future services and facilities comply with national guidelines, standards and legislation. The quality improvement division within the HSE is working in partnership with patients and families to improve the quality and safety of care for patients. The National Council for the Blind of Ireland has also developed specific information resources for healthcare professionals working closely with the HSE to provide input and invaluable advice.
I thank the Minister of State for the update on what is probably a new way of thinking. I hope it will evolve in a positive way. All the chief executive officers of the hospital groups in this country have a duty to sign up to what is being proposed. It is modest. I know the NCBI certainly provides supports, both human and financial, in this scenario. This, however, is something to which we will come back. It is also something I will monitor closely because I really believe in the concept of early interventions right across the board. I know the Minister of State does as well because we regularly speak about the importance of early interventions. I refer to when there is a deterioration in somebody's health, in whatever shape or form it happens. Society needs to click in, help and support. The Minister of State's answer is in that vein and that is the type of policy we need to look at moving forward. We have to take an holistic approach. If a person finds that he or she has a disability, we must have an holistic approach to how we can ensure his or her ability rises to the top and he or she can overcome his or her disability. I thank the Minister of State.
I thank the Senator. The point he is making is very welcome. He is a strong ambassador in the area of sight challenges.
On the point about early intervention, the key is awareness and people having conversations about it. I particularly welcome, therefore, the opportunities Senator Conway has in this House to raise awareness and champion these issues. Starting that conversation and encouraging it is leading to much more awareness. Many more people are having that conversation and, ultimately, that leads to people taking up the invitation and the challenge from Senator Conway to have eye examinations as often as possible. By being proactive and having a healthy eye check, people are able to avail of earlier intervention. I thank him again for his contribution to this issue and his continued good work on it. I wish him continued success in highlighting it.