Martin Daly: Health Services Failing People with Disabilities
Martin Daly sets out how Ireland's health services are failing people with intellectual disability and enduring mental illness, and why relying on individual clinicians' goodwill is not a sustainable model of care. He highlights gaps in primary prevention, dental and hospital services, and calls for named policy, advocates and protocols.
Martin Daly outlines problems seen in general practice, dental clinics and hospitals: long waits, fragmented services across county borders, and the absence of protected, contracted time in GP surgeries for prevention and monitoring of people with intellectual disability and enduring mental illness.
Daly argues that people with intellectual disability are not consistently named in national health policy, including cancer strategies, so there is no dedicated funding stream or systematic approach. That omission leads to poor outcomes, high psychotropic prescribing, missed chronic disease prevention and late intervention.
Daly describes how committed GPs, dentists and specialist nurses currently fill gaps but insists goodwill cannot be the long-term solution. He proposes adapting the chronic disease management programme as a model of care and creating funded advocacy roles so families are not left to negotiate complex services alone.
The address calls for practical changes in hospitals: flagging systems or registers on electronic records, community liaison intellectual disability nurses, and dedicated assessment space for people with sensory and complex needs. Daly stresses these interventions work where they exist but are not universal and therefore unreliable.
Key points
Martin Daly outlines problems seen in general practice, dental clinics and hospitals: long waits, fragmented services across county borders, and the absence of protected, contracted time in GP surgeries for prevention and monitoring of people with intellectual disability and enduring mental illness.
Policy omission and consequences
Daly argues that people with intellectual disability are not consistently named in national health policy, including cancer strategies, so there is no dedicated funding stream or systematic approach. That omission leads to poor outcomes, high psychotropic prescribing, missed chronic disease prevention and late intervention.
Advocates and models of care
Daly describes how committed GPs, dentists and specialist nurses currently fill gaps but insists goodwill cannot be the long-term solution. He proposes adapting the chronic disease management programme as a model of care and creating funded advocacy roles so families are not left to negotiate complex services alone.
Hospital care and practical solutions
The address calls for practical changes in hospitals: flagging systems or registers on electronic records, community liaison intellectual disability nurses, and dedicated assessment space for people with sensory and complex needs. Daly stresses these interventions work where they exist but are not universal and therefore unreliable.
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Transcript
Coming to the health issues and maybe coming back to the housing issues within the time I have, on the health issues, there is no doubt that there is a real issue around the general health and well-being of people living with disability, but it's also an issue around enduring mental health illness as well, where there are no programmes, primary or secondary preventative programmes where you would have protected time within a GP surgery by contract, by protocol, in which to provide, and much of the care in my experience as a GP comes down to the commitment of an advocate for the person who is disabled. A GP who may be vocationally motivated and makes that time, it often doesn't make business sense, but they will do it, and committed, say in the dental service, we have a situation on the Roscommon Galway border, we had a very committed public health dentist in Roscommon who literally saw it as a vocation to look after his group of people who had long-term disability and gave them the most outstanding care, but the wait list when you go into County Galway, three years waiting list to see a dentist in a public clinic, and a very fragmented service, and also siloed off, so if someone was on that border, literally 500 metres inside it, they couldn't go 10 miles to Roscommon, they had to go to Galway, which just doesn't make any sense in any common sense. So coming back to that, we have in general practice the chronic disease management programme, and I believe it's a protocol that might serve if it was a model of care maybe for people with intellectual disability, people with enduring mental health issues in the community, because we really do need to address that. Yeah, absolutely. I think that's a really valid point, Deputy Daly. I think mental health specifically, if we take a look at some of the maybe conditions that people, and the condition that people with intellectual disability have lived with over the years, high levels of psychotropic prescribing and some of the challenges, we really need to, I suppose firstly, try and improve people's quality of life as best we can, in terms of that if we want to tackle mental health difficulties with this population, we need to try and make things better, which as a society we've really tried to do in terms of closing institutions, giving people access to their own front door, but we've forgotten about their health needs. So we've really pushed on in terms of people's social needs, kind of escaping the fact that people with intellectual disability, biologically, some of them are predisposed to certain conditions, so in terms of I suppose the chronic disease management, that is absolutely one place, an area that could be addressed. But we don't call out people with intellectual disabilities within policy. If you take a look at the National Cancer Strategy, which is up for renewal now at the moment, I know the talks have gone next door, but if you go to the previous cancer strategy, and we take a look at outcomes for cancer for people with intellectual disability who are so poor, are the ones mentioned in that strategy? No, they're not mentioned. Unless that we call out, and I think Mary has a line that if people with intellectual disability aren't named in policy and guidance, then it's too late. There isn't a funding stream to support that. And I think you talk around the vocation of general practitioners, dentists, there's fabulous general practitioners, dentists, nurses and allied health professionals throughout this country, who go on above and beyond to provide care, but that's not good enough. That is not good enough for people's own goodwill. It doesn't make financial sense. In the UK, I think some of the, correct me if I'm wrong, but I think some of the NHS GPs have to have a certain amount of people with varying needs, like learning disability or mental health needs and stuff like that, so they have got a type of quota system in some areas that's operated. But we cannot rely on people's goodwill in order to meet the health needs of people with intellectual disability. And I think we see pockets of good practice, but we see across the country where there are general absences. And I think to take the point that often it could be too late by the time a GP will see somebody with intellectual disability. If we don't have got the ongoing monitoring and surveillance, so like community nursing for example, you've got community intellectual disability nurses who sees the person at the place where they live and does the ongoing health monitoring and also then is the advocate for the person so that they know that they need to see the GP, that they need to go to utilise whatever service that it is. But until we can operate a model of care, at that point, it's really, really difficult. But there is a real case for people living with intellectual disability and people with enduring mental health issues to have an advocate, not just in their family, because that puts enormous pressure on families. They're trying to negotiate. One young mother who was a young boy with complex medical needs and intellectual disability spent literally three months negotiating herself as a 28-year-old with the HSE to get a care package to bring her boy home. She knows his life is not going to be long, but she wants him at home and she's entitled to do that. She has given up her own career to look after him. So we need those advocates in the system advocating and taking that pressure off family members, especially as parents get older in the system and they themselves develop health issues as well. It's my experience that a lot of people with intellectual disability and maybe much more, that not enough attention is paid to exercise and diet, not enough into prevention. There are real issues around obesity, type 2 diabetes, hypertension. There are issues with the people with enduring mental health issues who really need to have, for example, lithium testing. There's no protocol in the service for it with the downside of thyroid problems and chronic renal failure. So we really do need to take a much better approach to this. We have people with intellectual disability who present to a hospital and may have complex medical needs as well. Well known to everyone in the hospital. Everyone knows who they are because they're recurrently admitted. They end up 12 hours on a trolley in an emergency room. Should there be dedicated physical space where people with intellectual disability or complex medical needs can be assessed? Or should there be a system where there's a register kept? So everyone in that hospital knows this young woman comes in with recurrent urinary tract infections, requires antibiotics and IV fluids, and they're going to be admitted directly to the ward because everyone knows. They lift up and say, this is so-and-so. We're going to take them straight in. Yeah, absolutely. In some settings, and particularly in the UK, there is a flag system that's identified on the person's electronic records if this person has an intellectual disability and whatever adjustments that are required and not flagged up. I'm not sure of any setting in Ireland which has that. Also, you might be familiar with the community liaison intellectual disability nurse. So that's a specialist intellectual disability nurse who works in a hospital and supports people with an intellectual disability from admission and through to discharge, and supports and works with staff in ED and across the setting. But the challenge with that, it evaluates really well, but again, it's not universal. There's a couple of Dublin hospitals which have it, and what typically happens is that that is typically one person. There's goodwill of potentially a director of nursing or an organisation which is going to financially support that to happen, and it works really well, but it becomes burdensome on the staff because they could be in a large acute hospital supporting multiple people with an intellectual disability. The challenge is, so what happens then? It breaks down, and there's a real challenge there with maintaining the ongoing emphasis. So absolutely, that is one thing that can be done. In terms of space, yes, absolutely, for people who've got intellectual disability and other neurodivergent conditions, there should be, but I think the reality is that there's not in multiple places, and because of the nature particularly of ED, there's real challenges around the sensory needs and physical needs of people with intellectual disabilities. But absolutely, the points that you make are all very valid. Thank you.