Commencement Matter: Neuro-Rehabilitation Services Provision, 2 December 2015

Senator Jillian van Turnhout: The Minister of State is aware that I have been tracking the issue of neuro-rehabilitation services for several years now. Such services are essential to support recovery and prevent disability for people with acquired brain injury, stroke, multiple sclerosis and a range of other neurological conditions. Thousands of Irish people still cannot get the rehabilitation they need when they need it. They face a lifetime of unnecessary disability, which can prevent them from returning to work and regaining their independence. It is estimated that there are 25,000 patients in need of rehabilitation in Ireland.

I have raised this issue because I am concerned about the deficits that exist in this area such as, for example, with regard to community teams. Since the three-year national strategy was published and came into place, little or progress has been made to deliver on any of its recommendations. For example, nine neuro-rehabilitation teams are needed in the community, but just three partially staffed teams are currently in place. No new teams have been established since the strategy was published in 2011. On the basis of the guidelines set by the British Society of Rehabilitation Medicine, our population means that 270 specialist inpatient beds are needed in this country. We currently have less than half of that number.

If we look at other rehabilitation services, we have a lack of longer-term rehabilitation supports, such as step-down units, transitional units and intensive home care packages, to allow people to go home after rehabilitation has come to an end. This means they end up in totally unsuitable facilities. For example, young people have to live in nursing homes, in acute hospital beds or in long-stay units with no ongoing rehabilitation. It is important to remember that people with neurological conditions need intensive therapy within a window of recovery. I know the Minister of State is aware of this. Those who are waiting to get specialist rehabilitation lose vital recovery time every day of their waiting periods. The National Policy and Strategy for the Provision of Neuro-Rehabilitation Services in Ireland 2011-2015 was published by the Department of Health and the HSE in December 2011. A joint HSE and Department of Health working group was established in 2013 tasked with the development of an implementation plan. Earlier this year, the HSE committed to releasing a draft implementation plan for consultation in December 2015. I now understand this will not be released until 2016, which is why I have tabled this matter. Separately, a model of care for specialist rehabilitation services is being developed by the national clinical programme for rehabilitation medicine. The draft of this model of care is being reviewed by the HSE following its submission in September 2015 and no date is available for its publication. Without the publication of the implementation plan for a neuro-rehabilitation strategy no money is being invested, no services are being put in place and thousands of people are not getting the rehabilitation they need. Yesterday, Mags Rogers of the Neurological Alliance of Ireland spoke about condemning people to live with an unnecessary disability. We are speaking about the vital window of recovery. As I have tracked this issue it has been a catalogue of delays, U-turns and no implementation plan. I have met many people in recent years whose quality of life would have been greatly improved if we could have intervened earlier. We have a strategy. Why do we not have a plan and why are we not implementing it?

Deputy Kathleen Lynch: We had difficulty at the outset, which I encountered very quickly, apart from having no money which was the biggest difficulty of all, as there was a difference of opinion as to how it should be delivered. It is very difficult to say to one specialist that what he or she is saying is wrong and say to another specialist that he or she is right. There was a clear difference of opinion as to how it would be delivered. This is why the implementation plan and the national clinical programme are so important.

The report, National Policy and Strategy for the Provision of Neuro-Rehabilitation Services in Ireland 2011–2015, made a number of recommendations for services for people with rehabilitation needs, including clinical, therapeutic, social, vocational and community supports. Following the development of the report, the Health Service Executive established the rehabilitation medicine clinical programme. The scope of the programme covers the whole of the patient’s journey from self-management and prevention through to primary, secondary and tertiary care. This provides a national strategic and co-ordinated approach to a wide range of clinical services. The programme includes the standardisation of access to and delivery of high-quality, safe and efficient hospital services nationally as well as improved linkages with primary care services. This is where the dispute arose with regard to whether it was better to do it within the community or whether it should be attached to an acute hospital.

The rehabilitation medicine clinical programme is nearing completion of a model of care for the provision of specialist rehabilitation services in Ireland, which will be the basis for the delivery of the service. The HSE disability services division has a role in certain key aspects of neuro-rehabilitation services, primarily the provision of community-based therapy services and personal social services. The disability services division will use the recommendations of the value for money and policy review of disability services to focus on disability funded rehabilitation services and enable reconfiguration of existing provisions through the establishment of demonstration sites. Close links will be maintained with the rehabilitation medicine clinical programme to ensure there is no duplication of effort and that all initiatives receive optimal support. Demonstration sites have been identified by disability services and mapping has commenced.

Having regard to the foregoing details, it is not accurate to say that no element has been delivered. A national steering group, chaired by the Health Service Executive social care division, has been assigned the task of developing an implementation framework for the national policy and strategy for neuro-rehabilitation services. The steering group includes representation from the national clinical programmes for rehabilitation medicine and neurology, the Department of Health, primary care, therapy professions and the Neurological Alliance of Ireland. Once the implementation framework has been agreed by the steering group, it will then go for consultation to the wider stakeholder interest groups. Following consultation, the framework will be revised and will guide and oversee the reconfiguration and development of neuro-rehabilitation structures and services at national and local level. The HSE is very aware of the needs of people with neurological conditions – how could it not be – and will continue to work towards improved services, making best use of available resources.

The disability sector is now connecting, and yesterday I met Enable Ireland which could play a very big part, and we all know the other non-governmental agencies with a particular interest in this area. The new hospital in Dún Laoghaire is on its way and it will provide not only outreach therapies but additional beds. It should have been done ten years ago, and the Senator and I know this, but with regard to thrombolysis, while prevention in accident and emergency department has played a significant role, much more needs to be done.

Senator Jillian van TurnhoutI agree with the Minister of State. As she knows I have been tracking this issue since I entered the Seanad. With regard to the people living with acquired brain injuries, strokes, multiple sclerosis and a range of other neurological conditions, if we got in during the window of recovery, we would not be speaking about disabilities but recovery. I said no element has been delivered, but for those looking for services during that period, they are not in place. It is not good enough and we must do more. I appreciate what the Minister of State said. We should see the implementation plan. We must give people hope, and the services should be in place in the way they are needed whether in the community or in settings. The pathway will very much depend on need. I will continue to track the issue for the remaining weeks I am here because it is an issue close to my heart, because of my father and because I have met too many people who would not be suffering every day if we had been able to intervene earlier.

Deputy Kathleen Lynch: I believe some of it has been put in place, based on a personal family experience. There is not one of us who will not have had such an experience as we go through life in whatever form. This will have involved going to an accident and emergency department at 12 o’clock on a Saturday and walking out, having been discharged, at 12 o’clock that night.

Senator Jillian van Turnhout: That is the window of recovery.

Deputy Kathleen LynchThe difficulty is that it is like suicide in that we will never know how many people we divert from the path of disability. It is difficult to know. However, we need to treat differently those whom we do not divert. The implementation plan and strategy must be published as quickly as possible.

Senator Jillian van Turnhout: On that we agree. The plan must be published.