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Dáil Éireann díospóireacht -
Thursday, 31 Mar 2022

Vol. 1020 No. 4

Ceisteanna Eile (Atógáil) - Other Questions (Resumed).

Hospital Services

Duncan Smith

Ceist:

12. Deputy Duncan Smith asked the Minister for Health the plans he has to improve treatment for sickle cell and thalassemia in Ireland; and if he will make a statement on the matter. [16982/22]

I would like to ask the Minister what plans he has to improve the treatment and resources for sickle cell and thalassemia in Ireland.

I thank the Deputy for raising this very important issue. I fully appreciate how sickle cell disease and thalassemia can place a substantial medical, social and financial burden on patients and their carers.

There are some positive developments in terms of services for children but more needs to be done in the transition for adults. Children can access services provided by Children’s Health Ireland at Crumlin Hospital which, I know, the Deputy will be familiar with. The centre at Crumlin is supported by a multidisciplinary team and it is now designated as an expert centre for haemoglobin and red cell disorders. A priority for the HSE this year is to further advance the non-malignant haematology service at CHI Crumlin. That is very welcome. In support of these services, the HSE currently reimburses a number of medicines under the community drugs schemes. I am further advised that a number of new therapies are in development for the diseases. I would very much like to see those coming on stream as soon as possible, if they are proven to be clinically effective.

All of that is good news. However, more work needs to be done. I am advised by the HSE that the transition of patients over the age of 16 to adult services is a challenge due to capacity at St. James’s Hospital. There are some real challenges there. To address this issue, a business case is under consideration with HSE leadership to further increase capacity at St. James's to meet the growing demand. I will ask the HSE for a speedy consideration of that business case so that we can begin to see improvements in access to services not just for children but for adult patients as they transition to St. James's Hospital.

I thank the Minister. I am very encouraged by the final part of his response. I met with Ms Lora Ruth Wogu, the CEO of Sickle Cell Ireland, and Ms Ijeoma Nwabuezi, who is on its board. One of their key concerns is how under pressure the St. James's service is. The service at St. James's Hospital, and the clinicians, are fantastic but they are under pressure. The Minister has acknowledged that. We need to improve resources there.

One of the things I have learned about sickle cell disease is that we need early diagnosis. We may need improved training for our front-line health professionals, GPs and nurses, to help them identify it earlier. It is a rare condition. We also need to consider a universal newborn screening campaign that can be done with the heel prick test. This is a condition that mainly impacts people of African heritage and some people from the Middle East. There are ways in which this could be done efficiently and in a targeted fashion to help follow-on services and the provision of new therapies.

I thank the Deputy for his ongoing advocacy in this area. These are red blood cell disorders that can affect adults and children. The children can access the services of the paediatric haemoglobin and red cell disorder programme in Children's Health Ireland. In 2000, a maximum of 20 patients with such a disorder had been identified. Today, nearly 400 patients have been identified. That is a considerable increase. As the Deputy said, adults can access services in St. James's Hospital and have been able to do so since 2014. There was a very low base of patients who needed services.

There are currently 34 patients with sickle cell disease and thalassemia in St. James's Hospital. They are on a chronic transfusion programme. In my final response, I will give the Deputy the rest of the information.

This condition is incredibly painful. When it flares up and is in crisis, the pain throughout the body is indescribable. It is a serious, painful and debilitating condition.

We need to consider an improved blood donation campaign. I know that is true across the entire county for a range of conditions, but there are a number of rare subtypes of blood that we need greater supplies of. We need specific campaigns to try to get members of the African community to donate blood, particularly rare subtypes such as Ro, to have sufficient supplies as part of a multifaceted response to treat this condition.

I commend the work of Sickle Cell and Thalassemia Ireland. Their campaign is ten years old this year, so if we could see some progress in the next few months, that would be great.

I thank the Deputy for his suggestions. I will refer his suggestion on the heel prick test. We have a group examining these issues. One of the things we want to do is to expand the number of conditions that are tested for. That is, in part, a result of the phenomenal advocacy work of Mr. Les Martin in terms of newborn screening. I will also refer the Deputy's suggestion around blood donation.

While the business case to expand access is being looked at in St. James's, there are no issues at the moment around the availability of the medicines, which is welcome. The medicines to treat the complications are available for reimbursement. We have approximately 41 patients who are awaiting transfer to CHI at the moment, and for all the reasons the Deputy has laid out, we need to make sure that can happen for those people as quickly as possible.

Question No. 13 replied to with Written Answers.

Departmental Funding

Paul Donnelly

Ceist:

14. Deputy Paul Donnelly asked the Minister for Health the status of the discussion on multi-annual funding for section 38 and section 39 organisations. [8783/22]

Will the Minister inform the House of the status of discussions about multi-annual funding for section 38 and section 39 organisations? This has been a critical issue for many community and voluntary organisations throughout the State. They have been calling for multi-annual funding for years. Proper financial support is essential for project management. Staff retention is difficult and most staff are on year-to-year contracts with no pension entitlements or job security.

I considered the Deputy's question at length and I was trying to understand exactly what he was asking. If I do not cover the specifics he wishes me to cover, I will happily revert to him with a note or talk to him about the issue separately.

Section 38 and section 39 organisations have service provision arrangements with the HSE across a range of services, including healthcare, social care, mental health and disability services. The arrangements cross over voluntary acute hospitals, under section 38 funding; disabilities, where a significant proportion of the funding goes to both section 38 and section 39 organisations; and some other section 39 organisations which provide services for older persons, mental health, palliative care and so forth.

With regard to the disabilities sector, the disability capacity review to 2032 has identified the importance of multi-annual funding, to the Deputy's point, to support forward planning of the services, which can be difficult and frustrating for many of these organisations. The review has drawn on the best available evidence and information to estimate the scale of the current outstanding need for HSE-funded disability services and how we can shape this and invest in it over the next ten years.

Work is under way to prepare an action plan for disability services for 2022 to 2025, in line with the commitment in the programme for Government to work towards implementing the disability capacity review and building out all of those services. In practice, however, the full roll-out of multi-annual budgeting across Government is constrained. That is not only the case for section 38 and section 39 agencies because funding is constrained for hospitals and waiting lists. We launched the waiting list action plan for this year. I would have loved to have been able to launch a multi-annual plan but there are legal constraints around multi-annual funding. It is something we are looking at for current expenditure. We can provide multi-annual funding for capital expenditure. To the Deputy's point, section 38 and section 39 organisations would be in a much better place if we were able to make the kind of multi-year commitments we would like to be able to make.

I appreciate the Minister's response. Multi-annual funding is a cornerstone for most community and voluntary groups to be able to put themselves on a firmer footing, as the Minister has explained. I will give him a good example of how important it is. I am aware of a particular addiction service that was down a member of staff for a period of six months during the pandemic and, for specific reasons, it could not recruit to find a replacement. This led to an underspend of €23,000 on the project. The HSE has insisted that money is paid back, despite the fact the same project has requested funding for the past five years to run programmes for people who are suffering from long-term mental health issues which have now been exacerbated by the ongoing pandemic.

Multi-annual funding would allow for timely, well-thought out and strategic planning based on communities, agencies and stakeholders. It would allow for realistic key performance indicators to address ever-changing trends in drug use. Multi-annual funding would allow for services to respond with measures that are tried and tested. If there were multi-annual funding, the HSE could not come to the organisation I spoke about and request the return of the underspend. That organisation could use the money to address emerging needs, which is the essence of community development.

I thank the Deputy. He has covered several of the challenges we have. One of those is around multi-annual funding. To some extent there is multi-annual funding, in that when we put money in the health budget base, it is understood that money will stay there going forward. If we have invested in disability services, drug services, which are led by the Minister of State, Deputy Feighan, mental health services, acute services or whatever else, those are seen within the budget base as permanent expansions. That is very useful. However, the voluntary organisations, as the Deputy said, do not have the same level of guarantee to allow them to offer permanent contracts in some cases.

The Deputy raised another important point which I might address in my final response. When there is an underspend, we have a slightly perverse incentive to just get the money out and spent so that it does not get taken back.

That is absolutely the case. That is key. I have seen it many times, as I am sure the Minister and every other Deputy has. Anybody who has worked in the community or voluntary sector will know about it. If an organisation that has a service level agreement is very good at managing its finances, it is penalised at the end of the year because that money is taken back. There is a concern that when the following year comes around, the HSE decides that organisation is very good because it did not need the level of funding allocated. The HSE will then consider chopping off a bit of the budget for use somewhere else. That is where multi-annual funding is critically important. It gives people an opportunity to know the level of funding available to them for the next three to five years, or whatever length of time it may be. It gives people certainty and the opportunity to manage that money. It is the same in every business, as the Minister knows. Some years you spend more and some years you spend less.

However, over a period of time it is possible to plan and strategise. If there is a special project, it could be decided to use that underspend on that the following year. That would be critical.

I agree. The way healthcare in this country is funded generally needs a radical overhaul. For example, most of our hospital and community services are funded through a block grant. We give hospital managers a certain amount of money for the year regardless of what happens in their hospital, how many patients they treat or how much innovation they do. Instead, we should be saying to the HSE, or the section 38 and section 39 organisations, that we are paying for services. We should be commissioning services and paying per patient, or for each person supported in addiction services, for example. If at the end of the year they are a few people short and there is extra money, we would not simply pay them less next year because we would be funding this amount of service. The Deputy's points are very well made, not just with regard to addiction and community services but services right across the healthcare system.

Questions Nos. 15 to 113, inclusive, replied to with Written Answers.
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