I am accompanied by my colleague, Mr. Donnchadh Whelan, regional manager of the Peter Bradley Foundation. I am here with Headway and BRÍ Ireland to highlight the issues of acquired brain injury. I have given the committee my submission and will not go through it. However, I will try to summarise it and make real some of the issues and some of the actions we are taking to address them. There is a nice map on the front of the submission that will give some idea of the distribution of the Peter Bradley Foundation services.
On 15 March 1980 a garda knocked on the door of the home of Mr. Bradley — the knock many of us dread. Their son had been involved in a very serious accident. That is the one thing any parent dreads. Peter had been involved in a motorbike accident in Dublin. He was a student about to finish his solicitor's examinations. He was returning from UCD when an 18 year old, who had got a new car for his birthday, came flying out from a side road and knocked him down. Peter's parents lived in Donegal. Peter's accident occurred in Dublin. One can imagine the flurry and the distress that caused. From 1980 onwards, Peter would have received neurosurgery and over the years rebuilt his life. Obviously he had lost all his knowledge around everything he had learned in college. There was no returning to college, so a life had to be rebuilt. Luckily, he was physically independent.
Unfortunately, he had another road traffic accident in 1992 in the Philippines which again required a whole rehabilitative process. In 1998 he suffered a stroke. I am fast-forwarding to bring the committee to the point where, in the family's life and in Peter's life, he became what is commonly known as a bedblocker or a delayed discharge in Beaumont Hospital because he was no longer able to go home. At that point the family began to seek services. We tried all the disability services provided at that time and were told they did not deal with people with a brain injury.
He was not physically challenged. One can imagine; we had somebody with what they call behaviour and emotionally challenging problems. He needed supervision 24 hours per day, seven days per week but not physical assistance. That poses a challenge to organisations not geared for that kind of support and help. The only place for him was a nursing home. Because he got disorientated at times he was in a locked Alzheimer unit. That is where this story started. This is one family's story at that time in seeking services to try to respond to the needs of a family member. A new model of brain injury services was born. It was put to the east coast area health board at the time, which, we knew, did not have a solution. Rather than rant and rave we presented the solution we knew would help Peter, and suggested to them that with the backing of the HSE it would also help other people. What started with one family and one family member eight years ago led us to discover that there were an awful lot of families just like them who had similar stories.
It is now an organisation, having grown from one family and one family member to a large national organisation reaching out to thousands of people in similar situations. There is realisation that this story is very common.
I would like to give the committee an overview of where the Peter Bradley Foundation is eight years later. The other witnesses have described the neurosurgical part which is the early intervention. If one is lucky one will get the post-acute intervention in the national rehabilitation centre which is the centre based rehabilitation. If one can think of it as a continuum, we are the community part which assists people coming out from an acute hospital if they do not have post-acute rehabilitation. We would be the follow-on from either the National Rehabilitation Hospital or discharge from hospital. Given the backlog of need, we also meet people who are ten to 15 years post brain injury. As an organisation, we deal with people who have had their brain injury ten to 15 years ago. Now, they realise they could get help. Families may have fallen apart and the person may have been admitted with other problems and these have come to light.
The current models of service we offer include assisted living, from which Peter would have benefited. We have 15 residences throughout Ireland, the first of which was in Glenageary. Some 69% of the clients in those houses had been inappropriately placed in nursing homes and now 10% have moved on to the community, living independently with minimal support.
There are community rehabilitation outreach services. This service began when a client was being discharged from the National Rehabilitation Hospital who had a supportive family that could not provide care 24 hours per day, seven days per week. Therefore, his destiny was a nursing home. We were able to put in a rehabilitation assistant, trained by a clinical team and supported and reviewed. This gentleman went from having 35 hours of assistance per week over a period of 12 months to not needing the service at all. Those are the outcomes, though some are not quite so dramatic. In terms of improvement and rehabilitation we provide case management services and have eight case managers in place, based mainly in Dublin, Louth, Meath and Cavan and in the midlands in Tullamore. Their job is to take the person from the acute hospital through the rehabilitation process and all the way to the community. Therefore, there is the potential for people to be followed in those areas but in others, there is a huge geographical inequality.
Not everybody needs a specialist brain injury service. There are many other organisations the case manager would access. Their job is to know what services are required and what organisations to approach such as Headway, BRÍ Ireland or IWA. They would link into the existing services, while all the time keeping the brain injury specialist view of the person's problem.
Day resource includes family support services which include therapy and education, psychology services, home liaison and social work. That is the important part because nobody has a brain injury and does not affect the rest of the family. It is something that affects the whole family. I certainly can vouch for that from a personal perspective.
That is an account of what we are doing. We are before the committee to show there is a practical solution to the terrible need about which it has heard today and what we can do. Other unmet needs include the delayed discharge of patients from acute hospital settings. Many hospital patients could be discharged much earlier. I saw a fully mobile man sitting up in bed as he waited to receive speech and language therapy which would not be available if he was discharged from hospital. Delayed discharge also affects the National Rehabilitation Hospital and other tertiary hospitals. While we welcome the new National Rehabilitation Hospital, another major backload will arise if community rehabilitation services are not supported when the new hospital opens. Treatment must be viewed as a continuum or flow.
Notwithstanding the substantial sums being spent in the national rehabilitation centre, services are not available to patients following discharge which causes them to regress and lose acquired skills. Even from a practical, value for money point of view, community rehabilitation services should be provided to ensure durability of outcomes.
People are attempting to live at home in non-functioning families or receiving a generic service which does not serve their needs. Many of those who cannot concentrate or sit for long periods become irritable or cannot remember what they have done from day to day. Such individuals have difficulty using programme based day services because when they are learning how to do something, it is expected they will carry over information from day to day. This is not always an option and some of them will become disruptive because they cannot sit in one place for longer than 15 minutes but must participate in groups lasting for perhaps one hour. These are challenges.
Some patients are discharged to regional hospitals when their rehabilitation at the national rehabilitation centre concludes. The lack of rehabilitation facilities in regional hospitals means many of them lose acquired skills. ABI provision is made for those aged under 18 years and over 65 years. Mr. Glynn highlighted, however, that services for those under 18 years are negligible. Children's services are in need of urgent attention. Four ongoing pilot projects focus on children aged under 16 years.
On designated ABI respite services, it is asked why people cannot use ordinary respite services. The reason most families of persons with acquired brain injury will not use such services is that patients placed in an institutionalised setting where, for example, meals are placed in front of them, frequently regress rather than progress. They argue it is not worth taking the weekend off if the progress made by their relative is lost when he or she returns home. For this reason, ABI specific respite services must be made available.
Resources to support non-nationals, Travellers and prisoners with ABI are also required. ABI awareness barely features in educational settings, including courses for health care and allied training professionals. It is amazing how little is known about acquired brain injury.
That brings me to the reason representatives of the Peter Bradley Foundation have come before the joint committee, namely, to ask members for assistance. We have a solution but need the joint committee to give us support. The Peter Bradley Foundation is regionally structured to reflect the HSE regions. We have four regional hubs, each with a clinical team, including case managers and rehabilitation assistants, which provides neuropsychology services, occupational therapy education and social work. We request assistance to develop these regional hubs. Owing to geographical inequality, in some areas we have full teams, while in others we only have half teams. Addressing this discrepancy would offer one quick solution. As infrastructure and support are in place, any money provided would be allocated directly for the persons with a brain injury. This is a major positive factor in making rapid progress.
The Peter Bradley Foundation has case managers who link up with all the organisations providing services for people with a brain injury. Persons with acquired brain injury must be regarded as a distinct group and recognised and funded as such. In the United States legislation has been enacted to provide for the group affected by traumatic brain injury. Having started from ground zero, so to speak, we have not made much progress. Unless money is ring-fenced and designated for this group, it gets lost in myriad other services.
Core funding is an issue for the Peter Bradley Foundation. In 2004 the foundation approached HEBE, the body representing the CEOs of the health boards at the time. HEBE had identified the needs of people with a brain injury and we offered it a solution. As a result, it agreed to provide funding to establish national structures. As our organisation grew in the respective health board regions, HEBE undertook to fund it. We were initially allocated funding in 2004 when we operated three services and employed 30 staff. We now have 50 service units and 200 staff but our funding has not increased since 2004. The Peter Bradley Foundation was a victim of the transformation of the health boards into the Health Service Executive. As the changes took place, the staff with whom we were dealing moved. When we referred to the funding commitment we had been given, we would be told the relevant person no longer worked in the HSE. The problem was as basic as that. It was not a lack of will because we continue to work in partnership with the HSE. However, the executive needs to receive sufficient funding to enable it to fund us to provide services.
There is a shared vision for national, regional and local services. We need a national ABI policy. A group consisting of people with acquired brain injury, their families and carers and service providers should be established to jointly identify needs. It requires good demographic information and should set realistic, costed objectives to be met within specific timeframes. This would enable us to determine what services should be in place in three or five years. We want a policy, not another strategic plan. While we accept that nothing can be done in a day, services need to be provided over time and in a planned manner.
The Peter Bradley Foundation echoes Headway's call for epidemiological research to be carried out. Where are the people with a brain injury? Could people who present with a brain injury at accident and emergency departments be registered? Could the physical and sensory database which currently only includes those with physical and sensory difficulties be adapted to include those with cognitive behavioural and emotional difficulties?
It must be accepted that most people with acquired brain injury are not physically challenged in a noticeable manner. For example, the majority do not use wheelchairs and their appearance will not have changed since they acquired their injury. They continue to live their lives while struggling with the organisational executive difficulties Mr. Barrett described.
The Peter Bradley Foundation has secured international accreditation for the provision of specialist services for people with acquired brain injury from the Commission on Accreditation of Rehabilitation Facilities. The CARF accredits organisations and facilities in Europe and the United States. One of the major benefits of a having a quality standards programme is our ability to produce quality outcomes. When stakeholders ask what they will receive for the money they provide, we can clearly show measurable outcomes. When somebody avails of our service, we know what difference the money makes to their progress.
I will outline a case as an example of the service we provide. Kathleen, a wheelchair user and former director of nursing who suffered a brain haemorrhage, came to a Peter Bradley Foundation house in Limerick having spent five years in a geriatric unit at Kerry General Hospital. Her bedtime during those years was 8 p.m. and shower time was at 7.30 p.m. on a Thursday. Within three weeks, she was able to transfer from her wheelchair to the toilet without assistance and could shower any time she wished because she had en suite facilities. She now goes out and about in the community, shopping and performing everyday activities most of us take for granted. These changes may appear minor but they were very important for Kathleen and illustrate what can be done and what needs must be met.
