Ms Mary Farrell:

I thank the committee for the opportunity to discuss acquired brain injuries. I listened to the remarks of Ms Bardon and I could raise many of the same issues she did. The same issues are arising for people with acquired brain injury on discharge from hospital. I am starting at the end, in a way, because of the way things are evolving. I recently found a letter that I wrote many years ago regarding the lack of brain injury services and it is as relevant today as it was back then. Not a lot has changed and that is very disappointing, given that Ireland has ratified the UNCRPD. There has been no improvement in services to align with the various articles of the convention.

There are approximately 800,00 people in Ireland with a neuro-disability or condition. These figures include people with people who have had a stroke. There are 120,000 people living with disability following an acquired brain injury and 98,000 people sustain a brain injury annually, ranging from mild brain injury through to very traumatic and serious brain injury. In addition, there are 40,000 people with epilepsy. Many of these conditions can coexist, that is, many people with acquired brain injury have a dual diagnosis and need several different types of clinical and rehabilitational services.

There is a lack of structure from acute hospital services through specialist rehabilitation and there are no step-down facilities, community services or supports in place. In 2011, the national strategy and policy for provision of neuro-rehabilitational services in Ireland implementation framework 2019-21 was published. Ten years on, there is very little to show for it. There has been no roll-out of community neuro-rehabilitation services and teams as envisaged and planned. There are a few pockets of services provided by Acquired Brain Injury Ireland and Headway Ireland, but these are limited to a few geographical areas and there is no implementation of the strategy as envisaged. It is fragmented and sparse. There is nothing resembling the national clinical programme for neurology model of care published by the national neurology programme working group and the clinical advisory group for the national clinical programme for neurology.

There are long waiting lists for neurological beds in Beaumont Hospital and, despite a complete rebuild of the National Rehabilitation Hospital, there was no net increase in capacity, particularly for people with brain injury. There is a long waiting list for rehabilitation and many people with acquired brain injury do not get a bed at all but are left at home for families to cope with, as Ms Bardon just outlined, or to cope by themselves, depending on their circumstances, as best they can. We are back to a situation like that which existed back in 1988. I will speak about my personal experiences later.

In addition, the HSE national clinical programme for epilepsy model of care document that was launched in January 2017, nearly five years ago, has not been implemented, not even in part. Indeed, the services for people with epilepsy have deteriorated. In fact, according to a report by the Neurological Alliance of Ireland in March 2021, there are 22,000 people on a waiting list to see a neurologist, an increase of 40% in the past five years. That is seriously under-resourced and many people are becoming seriously disabled or dying as a result. Ms Bardon touched on that issue. The recommended number of neurologists for epilepsy is 35 but the actual number is 22. That is epilepsy alone. The waiting times have lengthened, especially in the past two years.

There are no provisions for transport or community integration for people with acquired brain injury. There were three different types of transport schemes to help people with transport but I understand that at this time all three have been withdrawn, with nothing to replace them. Many seriously disabled people are unable to access public transport even if it is available. It can be an expensive trip to a Dublin hospital, especially given the cost of fuel and parking and so on. There is no support or provision for any of this and many people cannot get outside their homes unless they have a car and a person to drive it. I do not know whether anyone present watched the recent "Prime Time" television programme on wards of court, which had quite a lot of content on disability and brain injury. These people cannot afford to do these things on disability allowance or any other meagre allowance. The disability allowance does not equate with the cost of living. All present will be aware that the cost of living with a disability is an added financial burden as people must fund many services and items from their own pocket.

The cost of heating their homes has escalated to an extraordinary degree. Something will have to happen or people will end up sick, in hospital or in nursing homes.

Increases in funding for disability services have been announced in recent budgets and from time to time. That will take time to filter down, and we are still playing catch-up with figures pre-2008, when services fell through the floor. We know that from what is happening in the public sector, across the board, in hospitals and so on. That affected disability services to an extraordinary degree. I have been witness to that because I was there at the coalface each and every time all those changes happened. We do not seem to see the budgetary increases filtering down to actual changes to or improvements in services.

Our eldest son was involved in a road traffic accident in 1988 and suffered a catastrophic brain injury as a passenger in a car. He was on life support for many weeks in Beaumont Hospital and, later, underwent rehabilitation in the National Rehabilitation Hospital after a lengthy wait and a stressful time trying to get a bed there. It is the same now. That is very serious because that was 1988. There is no follow-up for patients who are discharged, and families or individuals living on their own are left to cope. It depends on their circumstances; that is where the outcomes change. Some families have a lot of support and others do not. It depends very much on the families concerned. We spent hours travelling to various hospitals where doctors threatened discharge, and eventually there was discharge. At that time, as would be the case now, there was no follow-up and no service at all. My son did well with the rehabilitation on offer at the time, but it was not specifically brain injury rehabilitation. He was eventually allowed home for weekends. He was prematurely discharged then and there was no planning, no support and no services. He was not fit to be discharged and needed further rehabilitation, but that was not available.

We were expected to care for our son in our own home without any help whatsoever. The impact of all that on the family was profound because our son had no insight into his difficulties, having a brain injury. I was working at the time, and when I tried to get help I was told it was my responsibility to stay at home and take care of him. We spent endless hours trying to find out more about brain injury and how we could help him. Back in 1988, that was difficult because we had no access to the Internet or information at the touch of a button, as we do now.

Eventually we found rehabilitation services in the UK. We got there after quite a long fight. In the meantime, the Office of Wards of Court was involved. I will not go into that here, but it is a limiting factor as regards what a person with a disability can do. We had to fight a battle with the services here to get a referral to the UK, and we had to fight a battle to get our son his own funding to take him to the UK. There was absolutely no physical or financial help for us to do any of that. It was an absolutely terrible time.

Then, when our son eventually benefited from the services in the UK, the recommendation, after nearly two and a half years, was that he return to live semi-independently here with support for a trial period, with a view that that would continue. Of course, there were no more services here at that point than there had been earlier, so he still had no services and we were left scrambling around for physiotherapy and other support to help him. He had been involved with a number of projects that had some support when he lived in Dublin but they did not work out very well because there was a lack of coherence and a lack of structure. It was very ad hocand falling apart because there was no one co-ordinating it all.

He developed epilepsy and, with the acquired brain injury, that became a really difficult time. It exacerbated the difficulties he was experiencing as a person with a brain injury. Over the years, when he returned back home to live semi-independently in his own home, we tried to get services for him. There was a constant battle over the 1990s and 2000s, and we still had to go back and forth to the UK many times for services which we could not get here or which were of such poor quality here that we ended up going to the UK for them anyway.

Chris's father and I, in our 70s now, have been providing support and care for all those years. When we reached 70 we thought something had to change and we had a lot of meetings and confrontations with the HSE - and I do say "confrontations" because the meetings were contentious. The HSE officials were saying, "No, you cannot have", and we were saying, "He needs". We were constantly explaining what our son needed and they were telling us what they were giving us. I was saying, "I do not need anything. My son has these needs. This is the assessment and these are his needs." Eventually, we got enough services to allow him to continue living in his own home. That is working quite well for him and for us, and for that, to anyone who might hear this, we are extremely grateful to those involved who managed to make that happen, despite all the odds being stacked against us.

There is no comprehensive shared protocol involving all the different disciplines now involved. That means gaps and confusion. You have a physio or an occupational therapist with the HSE, an acquired brain injury service doing another thing, another service provider doing home support, the clinical end and the GP. You see all these moving parts and you have no one person with all the information in any one place. It becomes extremely frustrating and difficult and, for us, to step back from this and allow it to progress as it should is impossible because it keeps coming back to me as it seems like I am the reservoir of all information for everything and everybody. There is insufficient physiotherapy, occupational therapy and psychology services, and appropriate brain injury services are not available in every area. Even what is available is not often suitable to a person who may be, like our son, 30 years post injury. The services are very much geared towards people who are newly injured. There is a very different type of service need in that regard, and there is a lack of recognition and probably a lack of service funding - I do not know - to separate out those services and provide different types of services for different categories of people with acquired brain injury. There is no day service and no centre to hold the service all together.

Our son's life lacks meaning and purpose. It seems like all our work still was not enough to get our son and others like him the services that are recommended and needed. There are no stand-alone specific brain injury services, despite all the reports and recommendations that have been made and accepted. They are included in the overall disability services. There are insufficient physiotherapists, occupational therapists, neuropsychologists and other clinical staff. There is no one to replace them when they go on leave, which may be for an extended period, during which the person is left high and dry, without any service, or a reduction in an already meagre service. At one stage a whole year went by when our son did not have any physiotherapy input. That would have a hugely detrimental impact on him and he would be regressing. It is a constant battle to keep the services and to keep going. The situation since the advent of Covid has been very difficult, with a lot of services and face-to-face meetings with clinicians. Case reviews have been held via online forums and there are continuous gaps. You have to look for everything. Protocols that were in place in respect of spasticity, for example, appear no longer to apply. The rules change without explanation.

I wish to raise an issue as an aside, if I may. There is a big problem with online forums. Everybody now assumes that everybody is online and can do Zoom meetings or whatever else. The software the committee uses is not Zoom, but members know what I am saying. It is an online forum. I cannot state this strongly enough. I do not have this problem, thank goodness, but many people my age and people with brain injury are not able to access these forums, and not alone that, but in a lot of areas - we see this in the newspapers every day - there is no broadband. You need up-to-date equipment to be able to access these forums. You cannot access them on a ten-year-old computer. It probably will not be able to do it. It is therefore not feasible for everybody to do this. I just wanted to place that before the committee as an aside, but it is across the board, I think, very important for everybody.

That is my piece. I thank the committee and the Chairman for their attention.