Wednesday, 6 December 2017
Neurological Services: Motion [Private Members]
“That Dáil Éireann:
notes that:— the World Health Organisation in a 2004 report on neurological conditions described these conditions as the greatest public health challenge facing public health systems in developed countries worldwide;
— the United Nations Convention on the Rights of People with Disabilities calls on countries to ‘strengthen, organise and extend rehabilitation services’ for people with disabilities;
— over 25,000 Irish people each year struggle to get the neurorehabilitation services they need to prevent disability and support recovery from conditions including stroke, acquired brain injury, multiple sclerosis and Parkinson’s disease;
— the National Policy and Strategy for Neurorehabilitation Services (neurorehabilitation strategy) was published by the Department of Health and the Health Service Executive (HSE) in 2011, with an implementation plan promised within six months but still unpublished six years later;
— the Minister for Health in February 2017, requested an implementation plan to be published by the end of June 2017, but a working group to develop the plan has not yet been put together and this is the second deadline announced and missed in 2017 as the HSE will not deliver the plan by December 2017;
— it is estimated that only one in six people who need specialist rehabilitation services in Ireland can access them;
— as a country, we lag far behind the rest of the developed world when it comes to neurorehabilitation services;
— Ireland has less than half the number of specialist rehabilitation beds recommended for its population;
— Ireland has the lowest number of consultants in rehabilitation medicine in Europe;
— despite the recommendations of numerous reports and decades on from when the issue was first highlighted, there is still no dedicated specialist medical rehabilitation unit for people with a neurological disability in the south of Ireland; and
— in June 2016 the Neurological Alliance of Ireland and sixteen member organisations launched a campaign ‘We Need Our Heads Examined’ to increase political awareness and call for investment in neurorehabilitation services;agrees that:— there is an overwhelming lack of neurorehabilitation services at all stages of the pathway for a person with a neurological condition;
— at the bare minimum, there should be one dedicated specialist neurorehabilitation team per Community Health Organisation (CHO), yet only three such teams are in place and are not even fully staffed, and not one new team has been put in place since the Neurorehabilitation Strategy was published in 2011;
— where services do exist, they are underdeveloped, under-resourced and patchy;
— there are long waiting lists and access to services is largely based on a geographical lottery; and
— people with neurological conditions:accepts that:— the demand for neurorehabilitation services is growing, with our ageing population and with increased survival rates of people with a neurological disability, but services are completely insufficient to meet current needs;— spend significantly more time in hospital than is necessary;
— live in inappropriate settings such as nursing homes for older people or psychiatric facilities or at home with families who cannot cope;
— largely lead lives of exclusion and isolation, distanced from social, community and economic life;
— have families who equally experience significant burden and isolation; and
— are forced to travel abroad to get the services they need;
— the lack of neurorehabilitation services is having a devastating impact on people with neurological conditions and their families, resulting in unnecessary disability and inability to live to their full potential in their community;
— to optimise the gains for individuals, neurorehabilitation services must be provided on a timely basis and in a seamless fashion by a range of providers using a multidisciplinary approach;
— the piecemeal and patchy nature of the current services mean that people lose gains they make at another stage of the pathway if they cannot move seamlessly from one service to the next;
— many people with a neurological disability end up in nursing homes but residents in nursing homes cannot access community neurorehabilitation services and this is despite evidence that provision of neurorehabilitation in nursing homes can improve outcomes including discharge home; and
— the lack of neurorehabilitation services is a major factor in our Emergency Department crisis and delayed discharges with the National Clinical Programme for Rehabilitation Medicine noting that the lack of neurorehabilitation services may be responsible for up to forty per cent of delayed discharges; andcalls for:— dedicated, multi annual investment in forthcoming budgets in order to develop neurorehabilitation services, particularly in the community, in response to significant unmet needs and decades of neglect and underinvestment;
— the publication of an implementation plan for the neurorehabilitation strategy by the end of March 2018, with a clear timeframe for implementation, mechanisms to ensure governance and accountability at the highest levels of the HSE and by the Minister for Health and the Department of Health and a scope of service that provides a holistic response to all neurorehabilitation needs, in line with the recommendations of the neurorehabilitation strategy;
— the establishment of dedicated community neurorehabilitation teams in each of the nine CHOs; and
— investment in 2018, to target current waiting lists in the community following the outcome of a HSE mapping exercise earlier this year.”
I am pleased to move the motion and in doing so I thank my party colleagues for supporting me in putting it forward. I understand the Government is supporting the motion, which is very welcome, but we need to see the motion supported not just in words in this Chamber, as often happens, but in action in 2018. I also acknowledge and pay tribute to the Neurological Alliance of Ireland which has campaigned so tirelessly for investment in neurorehabilitation services. Some of those involved in the alliance are in the Gallery today. In particular, I want to highlight the contribution of the alliance's executive director, Mags Rogers. Well done to her. It is a good name. Many Members of this House have met those involved in the Neurological Alliance of Ireland and will agree that they make a very strong and compelling case. I am happy to have the opportunity to bring that case to Dáil Éireann.
The World Health Organization in a 2004 report on neurological conditions described them as the greatest public health challenge facing public health systems in developed countries worldwide. The WHO has also stated that an estimated 6.8 million people die every year as a result of neurological disorders. In Europe, the economic cost of neurological diseases was estimated at approximately €139 billion in 2004. According to the WHO:
Because most of the neurological disorders result in long-term disability and many have an early age of onset, measures of prevalence and mortality vastly understate the disability they cause. Pain is a significant symptom in several neurological disorders and adds significantly to emotional suffering and disability. Even burden estimates combining mortality and disability do not take into account the suffering and social and economic losses affecting patients, their families and the community. The socioeconomic demands of care, treatment and rehabilitation put a strain on entire families, seriously diminishing their productivity and quality of life.
We see that in Ireland, with some 25,000 people each year struggling to access neurorehabilitation services. It is estimated that only one in six people who need specialist rehabilitation services in Ireland can access them.
There has been a persistent lack of investment in neurorehabilitation services down through the years. As a country, we have fewer than half the number of specialist rehabilitation beds recommended for a population of our size. Furthermore, we have the lowest number of consultants in rehabilitation medicine in Europe. Where services do exist, they are undeveloped, under-resourced and sporadic across the country. This is preventing people from accessing the services they need to support their recovery. For example, there is still no dedicated specialist medical rehabilitation unit for people with neurological disabilities in the south of Ireland. Such a lack of neurorehabilitation services is having a debilitating impact on people’s lives. People with neurological conditions are spending significantly more time in hospital than is necessary. They often live in unsuitable settings and lead lives of exclusion and isolation. They are also often forced to travel abroad to get the services they need.
The motion we are putting forward is calling for the investment necessary to make our neurorehabilitation services fit for purpose. It calls for dedicated, multi-annual investment in forthcoming budgets and the publication of an implementation plan for the neurorehabilitation strategy. It also calls for the establishment of dedicated community neurorehabilitation teams across Ireland and investment to target a reduction in waiting lists for such services. The national policy and strategy for neurorehabilitation services 2011 to 2015 was published by the Department of Health and the Health Service Executive almost six years ago on 16 December 2011, with an implementation plan promised within six months. Six years on, this four-year plan still has no implementation strategy.
Last February, the Minister for Health requested an implementation plan to be published by the end of June 2017, yet a working group to develop the plan has not been put together. This is the second deadline announced and missed in 2017 as the HSE will not deliver the plan by the end of this year. There is great frustration about the situation, as can be imagined, and this frustration is compounded by the absence of any real progress in the provision of services.
In 2015, the Neurological Alliance of Ireland in collaboration with the national clinical programme for neurology carried out a survey of neurology services and over two years later the findings are still relevant. The survey found key deficits in staffing across all 11 neurology centres, with little or no access to multidisciplinary teams in Sligo, Limerick and Waterford.
There was a lack of dedicated beds, with only six of 11 centres having dedicated neurology beds. These beds were frequently required for other specialties within the hospital and not available for neurology. There were unacceptable waiting lists. Waiting lists for MRI scanning are a significant problem, with seven centres having waiting lists of a year or more. There was a critical lack of neurorehabilitation services. Eight of the centres reported limited or very limited access to hospital-based neurorehabilitation services, while ten of the 11 centres reported limited or very limited access to neurorehabilitation services in the community.
Four of the 11 hospitals reported no dedicated occupational therapy services for neurology patients. Five neurology centres reported no dedicated speech and language therapist for neurology patients. Five neurology centres reported no dedicated medical social worker for neurology patients, including Cork University Hospital, which is one of the two national centres in Ireland. Only Beaumont and Tallaght Hospitals had dedicated neuropsychology services available to patients. Within these centres, waiting lists can be up to one year. Sligo hospital reported no dedicated posts for any of the core supporting therapies of occupational therapy, speech and language therapy, physiotherapy and neuropsychology. The regional centres of Limerick and Waterford also reported very limited access to dedicated health professional staffing. Every hospital group exceeded the ratio for consultant neurologists for our population.
No centre has MRI access for routine referrals in under two months and seven of the 11 neurology centres cannot even gain access within one year of referral. These are serious deficits by any measurement. How do we address them? In 2011, when the National Policy and Strategy for Neuro-Rehabilitation Services in Ireland was being published, by coincidence the Association of British Neurologists detailed its recommended requirements for neurology services. The recommended ratio is for one consultant neurologist per 70,000 of population. This is exceeded within every hospital group. In one hospital group in the mid-west, the ratio is 1:200,000, which is almost three times what is recommended.
At the bare minimum, there should be one dedicated specialist neurorehabilitation team in each of the nine community health organisation areas. Only three such teams are in place, however, and they are not even fully staffed. Not one new team has been put in place since the neurorehabilitation strategy was published six year ago.
The demand for neurorehabilitation services is growing, with our ageing population and with increased survival rates of people with neurological disability, but services are completely insufficient to meet current needs. The lack of neurorehabilitation services is resulting in unnecessary disability and an inability to live life to the full in the community.
To optimise the gains for individuals, neurorehabilitation services must be provided on a timely basis and in a seamless fashion by a range of providers using a multidisciplinary approach. The uneven nature of the current service is such that people lose gains they make at another stage of the pathway if they cannot move seamlessly from one service to the next.
Many people with a neurological disability end up in nursing homes but residents in nursing homes cannot access community neurorehabilitation services. This is despite evidence that the provision of neurorehabilitation in nursing homes can improve outcomes, including the rate of discharge to home. The lack of neurorehabilitation services is a major factor in our emergency department crisis and delayed discharges, with the National Clinical Programme for Rehabilitation Medicine noting that the lack of neurorehabilitation services is responsible for more than one in ten delayed discharges. The National Clinical Programme for Rehabilitation Medicine has stated the following benefits could be delivered as a result of investment in specialist rehabilitation services in both the hospital and community for patients with neurorehabilitation needs: a reduced length of stay in acute hospitals by five days; a 10% reduction in readmission rates; a 5% reduction in care requirements; and a reduction in the discharge rate to nursing homes. I will conclude to allow my colleagues to contribute.
The demand for neurorehabilitation services is growing owing to our ageing population and increased survival rates for people with neurological disability. Services are completely insufficient to meet the current needs of people with neurological illnesses such as dementia, however.
I compliment my colleague, Deputy Margaret Murphy O'Mahony, on bringing forward this motion to highlight the need for investment in neurological health care services in the coming years. This motion is being introduced in co-operation with the Neurological Alliance of Ireland.
Every day in this country, 11 people are diagnosed with dementia. In 2016, 55,000 people were diagnosed with it. That figure is set to triple in the next 30 years. This is a significant public health challenge and one that will require the Government to plan and prepare immediately if it is to have the adequate services in place. In 20 years, there will be over 1 million people aged over 65. Of those, approximately 350,000 will be aged over 80. This will be a significant challenge for our health system.
As co-chairman of the all-party group on dementia, I believe we need to recognise that an increasing number of people will be living with dementia for long periods of their lives. How society includes them and cares for them will demonstrate our country's determination to be both inclusive and compassionate in how we care for our elderly citizens.
I am deeply concerned over the increase in the number of older people acting as carers for loved ones and relatives. According to the last census, from 2011 to 2016 there was an increase in this number in the order of 18.5%. There are now 29,000 people aged over 65 providing care for loved ones. It is absolutely unbelievable that people over 65 are providing care for their loved ones.
It is clear to me from my work on the ground in Waterford and in my engagements with a variety of older persons' organisations that older people are just not receiving adequate supports. There are not enough home help hours or respite supports and there is limited access to the fair deal scheme, meaning that the responsibility for providing care to people with neurological diseases is being passed on to spouses and other relatives. We all saw the programme last night on carers. It really brought what is happening home to us all.
Carers, without doubt, are some of the country's unsung heroes. They step in when the State is unable to provide care and support. This is happening all too often. We have a responsibility to ensure that the needs of those with complex neurological diseases are met. Where possible, we must also ensure the State provides the services their loved ones require. People with neurological conditions face a huge struggle. More often than not, the struggle is increased when the correct supports are not in place. The key to adequate care is funding. This is a field of medicine that has unfortunately suffered from a lack of investment over the years. This needs to change if neurology services are to be up to standard in meeting the future needs of the country.
I commend my fellow Deputies, Margaret Murphy O'Mahony and Billy Kelleher, for their work in this area. I commend Deputy Margaret Murphy O'Mahony for introducing the motion.
Every year, 25,000 Irish people struggle to access neurorehabilitation services. Estimates suggest that only one in six people who need rehabilitation services actually receives such treatment. I refer to crucial treatments that prevent disability, support recovery and make it easier to overcome hurdles when facing treatment for stroke, multiple sclerosis, Parkinson's disease and many other disorders. Fianna Fáil's motion captures why neurorehabilitation services must be enshrined within forthcoming HSE budgets.
There is a continued failure to understand the need for an holistic response to neurorehabilitation needs. Despite the publication of the neurorehabilitation strategy in 2011, neurorehabilitation services are lacking in six of the country's nine community health organisations.
Inaction following the publication of the neurorehabilitation strategy has a negative impact on people with neurological disabilities who grapple with unnecessary barriers. In my constituency, Wexford, there is no dedicated community neurorehabilitation team. There are insufficient post-acute rehabilitation beds and there is a striking lack of dedicated respite, long-term care and home care for people with neurological conditions.
With such sparse resources, it is crystal clear that there is a lack of supports at every juncture for a person with a neurological condition. Without local supports, there is a limit placed on the ability of patients to live to their full potential within their communities.
Some people with neurological conditions may be forced to live in inappropriate settings, such as nursing homes or psychiatric facilities, when they should be cared for in more appropriate ones. Not only does this limit a person's ability to recover from a neurological disability but it can also lead to mental health difficulties and challenges. The lack of services is forcing people with neurological conditions to lead lives of exclusion and isolation, separated from their communities, families and friends.
This motion demands the investment required to bring the nation's neurorehabilitation services up to speed with international standards, including those in my county of Wexford.
The Irish Heart Foundation is a member of the Neurological Alliance and the foundation has been advocating on the need to develop stroke services across the country. Access to stroke unit care is estimated to reduce mortality and severe disability from strokes by approximately 25%. The Irish Heart Foundation, in conjunction with the HSE national stroke audit 2015, found that just 29% of stroke patients were admitted to a unit and only 52% spent any portion of their hospital stay in a dedicated stroke unit. In addition, almost one in four hospitals in Ireland treating stroke do not meet the minimum organisational standards required to operate a stroke unit. It also found that no hospital in Ireland meets minimum stroke unit staffing requirements set down by the European Stroke Organisation, with deficits of 30% in nursing, 50% for physiotherapists, 61% for occupational therapists, 69% for clinical nutritionists and 31% for speech and language therapists, while only 44% of hospitals have access to a medical social worker and only 19% have access to a neuropsychologist. By any stretch of the imagination what is required and what is provided are poles apart. There is now a need for us to bring forward the implementation plan of the strategy and to start resourcing and planning ahead in terms of the professional personnel that are needed. When one looks at the dearth of recruitment in those key areas it is clear that we are a long way off addressing what is outlined in the strategy. In planning ahead we must take into account the difficulties with recruitment and start the process of training, recruiting and retaining staff earlier than is currently the case. We have a habit of identifying the need, putting in place the services in terms of capital investment and then starting the recruitment process at the very end when they should be done in tandem with providing the services.
The Irish Heart Foundation estimates that approximately one in six stroke deaths could be prevented through the development of a comprehensive national stroke unit network capable of meeting similar targets, with similar reductions in permanent severe disability requiring nursing home care. That point has been highlighted by previous speakers and no doubt others will also bring it up. Many people with an acquired brain injury or stroke are in inappropriate settings. They are in nursing homes or in poor accommodation at home without the proper supports. We need to look at how we care for people, not only in the context of the immediate needs but the longer term care as well. Putting stroke victims into nursing homes without the proper supports and services does nobody a service. The rehabilitative, recuperative process is very much diminished and the impact on the individuals concerned is very negative. That has been highlighted consistently in all the reports that have been published. There are copious amounts of empirical evidence not only in Ireland but elsewhere that early intervention in terms of rehabilitation has very positive outcomes for stroke patients. I commend the motion to the House.
I thank and commend Deputy Margaret Murphy O'Mahony for raising this very important topic and motion. I welcome the opportunity to state the Government's commitment to the publication of a plan for advancing neurorehabilitation services in the community, which is included in a Programme for a Partnership Government. Hence, the Government decided not to oppose the motion. I think we are all in agreement that neurological illness or injury has significant implications for the individual and his or her family. The care and support needs of patients are individualised and varied. The Health Service Executive, HSE, social care division and the HSE clinical programme and strategy division are working in tandem to progress the implementation of the national policy and strategy for the provision of neurorehabilitation services. The HSE has established a national steering group to develop an implementation framework for the strategy. Following a consultation process in 2016, the HSE has reconstituted the national steering group to ensure that the implementation framework takes a collaborative and holistic approach. The HSE national steering group is now comprises representatives across the whole health system, including heads of social care and the national clinical programme for rehabilitation medicine, acute hospital services, mental health, primary care, health and well-being, public health, health and social care professionals and the Neurological Alliance of Ireland. I welcome the involvement of the Neurological Alliance of Ireland in the national steering group. I welcome Mags Rogers and the team to the Dáil today. Their work and the work of their member organisations has been vital in raising awareness of the need for neurorehabilitation services.
It is important to note that the focus of the HSE national steering group is to develop a framework which is implementable across the entire country. The steering group considers that a managed clinical rehabilitation network model represents best practice as a means of providing neurorehabilitation services. To test the feasibility of this model, the steering group is developing a demonstration project pilot site to establish collaborative care pathways for people with complex neurorehabilitation care and support or accommodation needs. A working group has been established to support the demonstration project pilot site. The working group has drafted both terms of reference and an implementation framework.
The National Rehabilitation Hospital, NRH, provides complex specialist rehabilitation services on an inpatient, outpatient and day patient basis to adults and children who have acquired a physical or cognitive disability as a result of an accident, illness or injury and require specialist medical rehabilitation services. I am happy to say that the contracts for development works at the NRH were signed in August last and construction commenced on the site immediately. The construction work is due for completion by the end of 2019 and the new development is expected to be operational in 2020.
The development will see the existing ward accommodation at the NRH replaced by a new fit-for-purpose ward accommodation block of 120 single en suite rooms with integrated therapy services; a new sports hall; a hydrotherapy unit; a temporary concourse as well as clinical and ancillary spaces. In addition, links to the existing building will ensure full integration between the new development and the existing hospital on the site. The development will be a major enhancement to rehabilitation services in the country and will have a direct and significant impact on patient recovery, by providing an optimal ward and therapeutic environment for patient treatment in the NRH.
Good progress has also been made to reopen beds at the NRH, which were closed to enable the hospital to provide a safe and appropriate level of care to patients from within existing resources. Four beds have reopened since the end of October. The Department of Health has sanctioned €0.65 million towards the cost of reopening a further four beds.
The HSE's national service plan for 2017 contains a priority action to "establish an innovative pilot day service aimed at supporting people with severe acquired brain injuries". I am delighted to inform the House that work is well under way to complete the requirements of the service. Stroke represents one of the greatest areas of need for neurorehabilitation care in the Irish health services. The national clinical programme for stroke has been in place since early 2010. It aims to improve quality, access and cost effectiveness of stroke services. Early supported discharge services are recognised internationally as a basic, essential and cost-effective element of acute stroke care. Three pilot sites have demonstrated the effectiveness of early support discharge services in Ireland, including the reduction in delayed discharges, improvement in patient flow and the provision of greater access to stroke unit beds.
It is estimated that Ireland has approximately 1,600 major trauma patients each year. These patients have suffered injuries with the potential to cause prolonged disability or death. It is essential for these patients to get the right care in the right place first-time around. The trauma steering group, chaired by Professor Eilis McGovern, was established in 2015 to make recommendations on the development of a trauma system for Ireland. The group completed its final report in July 2017. The report sets out a series of significant and important recommendations, all of which are aimed at significantly reducing death and disability from major trauma. I understand the Minister for Health intends to bring a memorandum to Government on the matter shortly.
Although most families would prefer to be able to care for loved ones at home, hospital or nursing home care is at times necessary and form part of the continuum of care. The HSE is mindful of the fact that some people with a disability who are in nursing home care provision wish to, and should be supported to, move back to their home of choice. The HSE, through its network of community health care organisations, is working to facilitate this within available resources. However, nursing home support can also be an appropriate care option where persons concerned have clinically-assessed complex medical and social care needs that require this form of support. The HSE provides a range of assisted living services, including personal assistant and home support hours, to support individuals to live as independently as possible. While the resources available for the provision of assisted living services are substantial, they are finite. The HSE is committed to protecting the level of personal assistant and home support hours for people with disabilities, including neurological conditions. In the 2017 national service plan, the HSE expects to deliver 1.4 million personal assistant hours to 2,357 adults with a physical or sensory disability. This is an increase of 100,000 hours on the 2016 target, although I have heard the opposite said in recent comments. The relevant figure is 1.4 million personal assistant hours, an increase of 100,000 hours on the 2016 target.
The HSE service target is to provide 2.75 million home support hours to people with disabilities, which is an increase of 180,000 hours on the target for 2017. I am keen to ensure that the best possible services are available for all people with disabilities, including those with neurological illness or injuries. With budget 2018 we have been able to build upon significant existing resources and obtain additional funding for disability services. The allocation for disability services will rise to over €1.76 billion in 2018, which is an increase of €75 million. Of course, we could always do with more - many of my colleagues know that we always say as much.
It is intended that the 2018 HSE national service plan, once finalised and approved, will commit to progress the implementation of the national policy and strategy for the provision of neurorehabilitation services. Effective rehabilitation draws on a broad range of disciplines to meet the particular needs of individuals, with the object of assisting them to return to their life in the community. The Government, in speaking to the motion, clearly recognises the impact that rehabilitation can play in ensuring that people with neurological conditions can live a life of their choice to the greatest extent possible.
I welcome the opportunity to assure Deputies of the Government commitment to bring about real and substantial improvement in the provision of neurorehabilitation services.
I have seven minutes and intend sharing time with colleagues.
Sinn Féin will be supporting the motion. I commend Deputy Murphy O'Mahony on her initiative. I commend the Neurological Alliance of Ireland which I understand was instrumental in its drafting.
I imagine there is agreement across the House that we must help those with neurorehabilitation needs to lead full and meaningful lives by giving them quality tailored rehabilitation and support. Unfortunately, as it stands, we could not be further away from such a scenario. Over 25,000 Irish people each year struggle to get the neurorehabilitation services they need to prevent disability and support recovery from conditions, including stroke, acquired brain injury, multiple sclerosis and Parkinson's disease.
Neurological services are chronically underfunded. Over many years, Sinn Féin has been calling for additional investment in neurological services and has provided for this in each of the party's alternative budgets. We know early intervention ultimately reduces the care needed. Indeed, many studies clearly demonstrate significant cost savings post-rehabilitation. However, we are currently failing to intervene early enough.
The National Rehabilitation Hospital is currently the only service provider. It is underfunded and does not have the capacity to deal with the increase in population size and the increase in the number of patients who need neurorehabilitation services at the facility. The NRH is set for a redevelopment, to be completed by late 2019, but that will still not address the lack of capacity as the old hospital will cease offering rehabilitative services. In truth, we are talking about replacement beds not additional beds.
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 2011 with an implementation plan promised within six months. It is now over six years since the strategy was published and an implementation plan has still not been published. Mór ár náire. I understand that representatives from the Neurological Alliance of Ireland have met the Minister for Health, Deputy Harris, four times and that on each occasion he has promised that the policy would be implemented by the end of the year in question. It is a cause of great concern, however, to be told that, as of last week, a team to implement this strategy had still not been put in place. Have there been any developments on that front?
Despite our support for the motion I wish to put on record our disappointment that there was no mention of all-Ireland co-operation. As my party's health spokesperson over many years, and through my involvement in the Joint Oireachtas Committee on Health and Children, I pushed hard for the provision of an all-island deep brain stimulation service and for collaboration between neurology services in the South and neurosurgery at the Royal Victoria Hospital, Belfast. Such a proposal was endorsed by the committee and was due for roll-out in 2016. I urge Minister for Health, Deputy Harris, and the Minister of State, Deputy Finian McGrath, to ensure that this vision becomes a reality in the immediate future.
The current service is in need of additional resourcing and I acknowledge that this is a responsibility north and south of the Border. The Gavan Quigley and Neil Simms team at the Royal Victoria Hospital have performed a number of implant procedures for people presenting from south of the Border but far more could be done. Battery changing visits make up the greater number of patient throughput. This represents a failure on the part of both Administrations on the island and on the part of neurology services in the State, which continue to look to Britain for patient referrals. The Belfast-based all-Ireland provision of deep brain stimulation services has not and will not reach its true potential unless there is enthusiastic buy-in by all parties, political and otherwise. The Minister for Health, Deputy Harris, and the Minister of State, Deputy Finian McGrath, should seek and secure a full update report on the DBS service at the Royal Victoria Hospital. The report should include the informed input of Mr. Quigley and Mr. Simms as well as of Professor Tim Lynch at the Dublin Neurological Institute and others who have a direct involvement in or knowledge of this service, including the NAI and other representative voices.
I continue to encourage the Neurological Alliance of Ireland and other organisations to consider strongly and push for more North-South co-operation in other neurological areas as there are so many untapped opportunities and potential in all-Ireland approaches.
Again, I declare that Sinn Féin will support the motion as tabled. I hope that our collective voices and efforts will secure a much improved resourcing of this singularly valuable service in 2018.
I thank Deputy Murphy O'Mahony and the Neurological Alliance of Ireland for helping to draft the motion and I thank Deputy Murphy O'Mahony for proposing it.
This is an extremely important and timely motion. More than a year ago, I raised with the Minister of State the We Need our Heads Examined campaign. While we have heard some fine words in the meantime, unfortunately, precious little action has been taken. As a previous speaker noted, more than 25,000 people struggle each year to access the neurorehabilitation services they need to prevent disability and support recovery from conditions, including stroke, spinal cord injury, acquired brain injury, multiple sclerosis and Parkinson's disease. The gap between demand and capacity for specialist rehabilitation services is ever widening. Unfortunately, the services have not kept pace with developments in the acute sector and now lag behind acute services. As a result, large numbers of patients are discharged from hospital each year with a neurological diagnosis that would benefit from the input of a specialised community neurorehabilitation team but are unable to access rehabilitation services.
When I spoke to the Minister of State well over a year ago, I raised the case of Vera Ronan whose daughter, Natalie, became a tireless campaigner with the Neurological Alliance of Ireland when she saw what happened to her mother after she was left in a hospital bed without the support and services she needed. It is unacceptable that Vera Ronan was taking up a hospital bed, while others waited in the emergency department. There are patients like her all over the country who could have their needs more appropriately served outside the hospital environment if there was sufficient capacity in the system to facilitate this. We must, as a matter of urgency, move to deliver more neurorehabilitation services in a community setting. We must stop the unfair practice of inappropriately discharging patients to nursing home care settings. Many of those in nursing homes should not be there and require services to help them to live the best possible lives in their own homes and communities, rather than in an inappropriate setting.
The unfortunate reality is that people with neurological conditions spend significantly more time in hospital than is necessary. We all agree on the need for a person-centred, co-ordinated approach to patient care, with co-ordinated case management of patients, leading to improved patient outcomes and experiences. The development of appropriately resourced interdisciplinary inpatient, outpatient and home and community based specialist rehabilitation teams supported by education and training is required. Furthermore, waiting times for assessment and access to inpatient and community rehabilitation services and standardised pathways for people who require neurorehabilitation must be reduced. In the absence of a guarantee that these services will be provided, we will continue to pay lip service to the problem.
The Minister of State referred to the National Rehabilitation Hospital. The redevelopment of the hospital will not offer a panacea. The redevelopment project which is due for completion in 2019 will not address the lack of capacity because the old hospital will cease offering rehabilitative services. The Neurological Alliance of Ireland and a number of speakers made good suggestions which must be given careful consideration.
Tá mé an-bhuíoch go bhfuil deis agam labhairt ar an rún chomhaltaí príobháideacha seo agus tacaíocht a thabhairt dó. Dementia, Alzheimer's disease, stroke, Parkinson's disease, multiple sclerosis and epilepsy are just some of the neurological disorders with which most Deputies will be familiar. Most of us know someone, whether a family member, friend or colleague, who has been tragically affected by one or other of these neurological disorders. Behind the suffering of the individual lies the major challenge that husbands, wives, mothers, fathers, families and friends must face. Families are often faced with immediate, intensely emotional and practical demands. There is the sudden shocking realisation that everything has changed and families find themselves facing major readjustments in their previously normal lives.
The individual with the neurological disorder and his or her family face great uncertainties. Both face the life-changing prospect of having to manage a chronic, lifelong condition. Carers face the prospect of a lower quality of life, sleep deprivation, constant pressure and strains on relationships. Carers and sufferers face the prospect of social isolation, stress and coping difficulties, especially when resources and supports to ease their burden are absent. It is unfortunate that community services are insufficient and fragmented. There is an excessive reliance on voluntary funding, particularly following cuts in funding for special needs assistance, home care packages and so forth. Residential and respite care facilities have also been reduced, leading to a dependence on home carers. However, with family structures becoming increasingly complex in modern Ireland, fewer families are in a position to take on the burden of caring for a family member at home.
We have had a plethora of legislation, strategies and proposals. Quality and Fairness: A Health Strategy for All was published in 2001. The Disability Act was introduced in 2005. The Listen to Carers report was published in 2008. The National Carers' Strategy: Recognised, Supported, Empowered was published in 2012. The Assisted Decision-Making (Capacity) Act was introduced in 2015 and we also had the National Policy and Strategy for the Provision of Neuro-Rehabilitation Services in Ireland 2011-2015. Despite all of this work and the many aspirations set out in the various Acts and documents, implementation of many of the key strategies and proposals has been absent or incomplete.
It is estimated that between 10,000 and 13,000 people survive and live with a brain injury each year. People with acquired brain injuries are the largest users of neurorehabilitation services in Ireland, yet these services are severely underfunded. According to the organisation Acquired Brain Injury Ireland, neurorehabilitation enables people with a brain injury to recover and relearn skills to achieve their potential and start to lead their lives again. Neurorehabilitation combines specialised clinical and social care supports and is based on an agreed pathway of care. It is personalised, individualised and evidenced based. Following a brain injury, rehabilitation should be available as a basic right, not on the basis of a postcode lottery.
When a person acquires a brain injury as a result of a fall, an assault, an accident, a stroke or a tumour, he or she needs to relearn the skills of life. Depending on what part of the brain has been injured and the extent of the injury, the person will have to live with different consequences, many of which will be hidden. They may range from physical, sensory and cognitive impairment to psychological and emotional issues.
There is limited recognition in current health policy of people with acquired brain injury as a distinctive group with unique rehabilitation requirements. This must change. As a result of the lack of policy attention and focus, too many people with an acquired brain injury live in highly inappropriate settings such as nursing homes for older people, community hospitals and acute hospitals. In the absence of acquired brain injury services in the community, families struggle to cope. The problem is further compounded if the person with the acquired brain injury is under 18 years of age because services for young people with an acquired brain injury are almost non-existent. Having a serious brain injury is totally life-altering for the person and his or her family. It has significant social and economic consequences for the individual, his or her family and society as a whole. However, life can be made much better following a brain injury if the person has timely access to the range of services he or she needs.
I commend the authors of the motion which I obviously support. All of us want increased investment in the heath service, including in services to support people with acquired brain injuries. The appropriate time to allocate the necessary resources is at budget time. I hope, therefore, that the Government will allocate sufficient resources in next year's budget to provide appropriate settings and the care required by people with an acquired brain injury.
I support the motion.
I commend Deputy Murphy O'Mahony on it. It reads well, but is shocking. It is an indictment, not only on neurological services in Ireland but the health service in general. Many Members in this Chamber have been vocal about how health apartheid is rampant in the health service. One sees people who must struggle every day for basic health services.
Some of the pointers on the motion are incredible. For example, it refers to the UN Convention on the Rights of Persons with Disabilities, which I raised with the Minister of State on Topical Issues. Ireland signed that 11 years ago and it still has not been ratified. That is a bad start.
It also states that 25,000 Irish people each year struggle to access neurorehabilitation services in Ireland. These services are critical for early intervention, which is key to somebody recovering as quickly as possible.
I would like also draw attention to the provision of home-care services for neurorehabilitation. That is essential and should be provided in tandem as part of somebody's rehabilitation.
I could go on for ever about the lack of services for those with a neurological condition. These conditions range from somebody with epilepsy to somebody recovering from a stroke. There are myriad conditions. We must address those issues, particularly around home care because those who have a condition essentially do not want to be in acute hospitals or nursing homes. Sometimes they want to be at home getting back to their lives they had previously.
One can talk in flowery language about the health service in this country. I do not want to be a prophet of doom - sometimes that is easy here - but there is something fundamentally wrong in a society that does not take care of those who find themselves sick not of their making where the health service cannot look after them. It is a terrible indictment, not only of the Dáil but of society.
What it comes down to - I do not know whether the Minister of State, Deputy Finian McGrath, will agree but there is probably a consensus in this place - is that once there is a two-tier health system, one will always have inequality in it. If one had a one-tier health service, regardless of whether one was a millionaire or somebody on social welfare through no fault of their own, one would at least have greater equality when it comes to the health service and the services that it provides.
A two-tier health system leads to exactly what is stated in the motion. One has all these grave inequalities when it comes to people accessing services. Sometimes it is embarrassing to state that one is from Ireland when one sees some of the contents of the motion. It is an embarrassment and yet this is a wealthy country. If one has money in one's pocket or one is wealthy, one can get services but if one is poor or working class, one is at the bottom. That is fundamentally wrong in any society.
This is a good motion. It throws up a good debate about the lack of neurological services for those who really need them who, as I stated previously, have conditions not of their making - the conditions have probably chosen them. When they need that help, society should provide them with their needs and if we do not provide it, it is a terrible indictment, not only of this place but of society as a whole.
I was particularly anxious to speak on this issue because of what I know about motor neurone disease which, while it was not specifically mentioned in the Fianna Fáil motion, is a progressive neurological condition. I know about it from a very close friend of mine, a teaching colleague, who battled motor neurone disease very bravely and with great dignity - as much dignity as the illness allows - over the six years she had it. Also, through my work here and involvement in mental health issues, I met the late John McCarthy of Mad Pride who also battled motor neurone disease, for a shorter time. Then there were two former colleagues in the Oireachtas when I came in first - the late former Deputy Michael Fitzpatrick and the late Deputy Nicky McFadden, then a Senator.
I acknowledge the great work that is done by the Irish Motor Neurone Disease Association, IMNDA, and the support that it gives to those with motor neurone disease and their loved ones.
It is a horrible illness, attacking the motor neurone nerves in the brain and the spinal cord which means messages do not reach the muscles and that leads to weakness and wasting to the point where some have no power to do anything for themselves. The cause is not known. There are various suggestions and, therefore, the research is vital on what makes one person susceptible to the illness and another person not.
It strikes people of all ages, even the young. I knew a case of a young boy of 13 years of age who, I think, was the youngest to contract motor neurone disease. Obviously, he did not get long because he was so young when he contracted it. It is progressive. Once diagnosed, the person knows exactly what is ahead of him or her.
There are four main types. With amyotrophic lateral sclerosis, ALS, which is the more common with upper and lower motor neurone involvement, there is a life expectancy of two to five years. Progressive bulbar palsy, PBP, with the symptoms of slurring of speech and difficulty swallowing, has a lesser timeframe. Progressive muscular atrophy, PMA, only affects a small proportion with its weaknesses and clumsiness, and perhaps there is a better life expectancy. At one of the fundraising events I went to, I met a gentleman in his late 70s who had written a book about this. He had lived with motor neurone disease for many years, but his was a different type. Primary lateral sclerosis, PLS, which is rarer, may result in a longer lifespan or be life-limiting. I suppose this shows there is so much that is not known about this.
At the end of their lives, in spite of that inability to do anything, the two individuals who I knew best were in unfailing good spirits. I acknowledge their courage and good humour in the face of that horrible and appalling illness.
I am conscious of those battling motor neurone disease who are watching or listening, and their loved ones also. That is where the support is vital. Many want to stay in their own homes. I acknowledge the care and items - the type of wheelchair that she needed at different stages, the hoist, other adaptations in the house and also the hours of care - my own friend received.
It was a difficult process for the family. Part of the difficulty was the lack of a centralised agency to deal with all aspects of this neurological condition. There were hours of care, but some hours of care came from one agency, other hours came from another agency etc. It was difficult trying to co-ordinate all of that. Then extra hours had to be found when the illness progressed to a fatal stage. I must acknowledge the work of the hospice and the care that it provided. Of course, all of that does not take into account the hours provided by family and friends.
The motion specifically mentions other neurological conditions - stroke, acquired brain injury, multiple sclerosis, MS and Parkinson's disease - on which the same points can be made. There is need for a centralised adequate service which meets the needs of those with a condition.
There is a strategy which was published in 2011 but no implementation plan as had been promised. We are good on providing reports and strategies but we are weak on the implementation. I understand from the motion that a second deadline has also been missed and now it is expected some time in December.
The motion states "it is estimated that only one in six people who need specialist rehabilitation services in Ireland can access them". We do not have the necessary beds. We do not have the requisite number of consultants. We do not have the dedicated specialist medical rehabilitation unit. The lack of all of those makes it even more difficult for those with these conditions. With the necessary services, these people can have a better quality of life in whatever time they have. They should not be living in inappropriate settings and with a disjointed service.
I also have had personal experience in recent times with someone who had a stroke and I would not be satisfied with the care that he received in a mainstream hospital. There were nice physiotherapists who tried to encourage the therapy but there were gaps in the provision. There was no consistency and no urgency or drive with the patient. While the physiotherapists know what to do physically, I must ask do they have the psychological or counselling skills that are needed to motivate the patient. Physiotherapy can be painful and difficult and with elderly patients, physiotherapists need that additional skill because the work is challenging. The alternative, of course, is one leaves the patient in a semi-vegetative state unable to anything for himself or herself.
The same can be said for those in nursing homes with a neurological condition. While the physical care can be excellent, the lack of neurorehabilitation is detrimental.
We know that for stroke victims, treatment must be quick to optimise recovery. Treatment must be provided almost immediately because any delay is problematic. It is heartbreaking for patients to realise that treatment in those first few hours or days that could have made a difference did not happen, not to mention the additional financial costs incurred because they did not get the care they needed when it would have been most effective.
Diet and food play a huge role but there are varying standards throughout the country, although I know there are challenges for the big hospitals. I have looked at various studies on this, including one on a nursing home in Denmark which was dealing with patients with physical and mental disabilities. The patients' diet was changed and made healthier, and dramatic improvements were noted.
The briefing note that came from the Neurological Alliance of Ireland quoted research from 2011 on staff shortages. If similar research was conducted today would the results be similar? The survey drew attention to the importance of voluntary organisations which must be acknowledged. Members will have also received emails from PSPA Ireland, another voluntary organisation that supports a small number of people with particular conditions, namely progressive supranuclear palsy and corticobasal degeneration. As with motor neuron disease, there is no cure to date so rehabilitation and care are vital for quality of life. The group's campaign slogan is "We need our heads examined" and it is calling for implementation of the plans, with clear timeframes, good governance and accountability and the investment that is needed.
When one talks about neurological conditions, the first people to come to mind are Dr. Orla Hardiman and her team, some of whom I met through my own personal experience. Dr. Hardiman has highlighted the shortage of permanent consultant neurologists. I read a report a few months ago which detailed the fact there were 16 such consultants in the country, with a locum in Cork but we should have 39 in the long term, with an interim number of 29. I am not sure about the current figures. The Neurological Alliance of Ireland is highlighting those gaps. It is also drawing attention to the fact that recommendations have been made in numerous reports but that we still lack provision for multidisciplinary, palliative, respite and community care. There is also a need to address the provision of information. When people develop neurological conditions they need to have adequate information. Who will provide that?
I read about three young men with acquired brain syndrome, one of whom I met. Two suffered cardiac arrest while the third had been knocked off his bicycle. They spoke about the uphill battle they faced to get treatment. It was heartbreaking to listen to and read their stories. They were all healthy young men but they did not get the treatment they needed in Ireland. Two of them had treatment in Germany where they made progress. However, when they came back here that progress was not maintained. The treatment provided in Ireland is contrary to best international practice and it also contravenes the UN Convention on the Rights of People with Disabilities, which we will be ratifying soon. I hope that when we ratify the aforementioned convention we will then provide the resources that are necessary for people with neurological conditions because they deserve much better treatment than they are currently receiving.
This motion illustrates a deficiency in our health service which is replicated right across our specialties. It boils down to two basic facts, namely a lack of capacity in our structures and hospitals and a lack of staff to supply a service, which leads to long waiting lists. That is a simple analysis of the deficiencies in our health service. Critically, in neurological services in particular we have under-staffing in all of our level four hospitals. There are 11 such hospitals which are promoted as our centres of excellence but only four have dedicated occupational therapy services for neurological conditions. Five level four hospitals have no speech and language therapists and nine have no neuropsychological services which are vitally important for people with neurorehabilitation needs. Ten of the 11 reported limited, very limited or no access to community neurological rehabilitation services. Such services are extremely important because people will eventually go home. They will come out of hospital, return to their communities and will need community rehabilitation services.
There is a lack of dedicated inpatient beds in our hospitals as well as in the National Rehabilitation Hospital. There is a lack of community supports when people come home and a lack of diagnostic services. Patients have great difficulty accessing MRI and CT scanning. Most important, however, is the lack of staff, particularly in community care. That is what is holding up peoples' recovery and limiting their potential to make the best recovery possible. I welcome the fact that the Minister of State has said that the National Rehabilitation Hospital will provide 120 beds by 2020. That will make a huge difference to our services.
On the issue of manpower, we need one neurologist for every 70,000 patients but in many areas of the country the ratio is one to every 200,000 patients. The situation is particularly acute in the mid west. If we were to have a ratio of 1:70,000, we would need 66 neurologists. Currently we have fewer than 30 and some of those posts are not filled. We are very poor in comparison to our European counterparts in this regard. In fact, we are probably at the lower end of the scale in Europe in the provision of neurological services. Every hospital group has an excess of patients per neurologist which is quite unbelievable in 2017. This problem is only going to get worse because of our changing demographics. Our population is aging and we are developing more degenerative and traumatic brain injuries. Brain injury can be devastating. Strokes and traumatic brain injuries can have devastating consequences for patients and their families. The incidence of degenerative neurological diseases like Parkinson's disease, multiple sclerosis, motor neurone disease and dementia also increases as the population ages. All of these place a huge burden on families and patients. In that context, early intervention is critical but this is problematic when there is a lack of capacity and a lack of staff. Patients do not get the early intervention they need and consequently do not have the best outcomes. We need speech and language therapists, occupational therapists, physiotherapists, neuropsychologists and social workers to deal with the devastating effects of acquired brain injury. These need to be supplied within the hospital setting and also in the community.
This issue crosses all Departments and is not just confined to the Department of Health. The social determinants of neurorehabilitation will involve education, including retraining, to restore independence to patients. Patients will need housing, housing adaptation and extensions as well as access to transport and mobility allowances. Additional public transport will also have to be provided to allow people who have an acquired brain injury or who need neurorehabilitation to mix and have a social outlet. Social protection is so important in the context of neurorehabilitation. People will lose their employment and will need State support. As I said, this cuts across every Department and is not simply confined to the Department of Health.
Multi-annual budgets are buzz words in health planning now. The recently launched Sláintecare report has a huge section on integration and another on implementation. Recommendations for neurological services were made in 2011 but a plan to implement those recommendations has not yet been devised, six years later. If the same happens to the Sláintecare report, the development of our health services will be set back enormously. Changing demographics are a huge problem in the context of planning our health services. We need to publish that implementation plan. We need to have dedicated neurorehabilitation teams in every community health area. We also need to target our resources at staff in the community and in hospitals.
I am happy to speak on this important motion and compliment Deputy Murphy O'Mahony for tabling it. I am delighted the Minister of State is in the House to listen to the debate. In the brief time available to me I want to acknowledge and salute the work of the Parkinson's Association of Ireland and in particular, the Tipperary branch, which was established over ten years ago to provide services and supports to people affected by Parkinson's disease in County Tipperary. I also want to compliment the work of Acquired Brain Injury Ireland which is Ireland's leading provider of flexible and tailor-made services for people with an acquired brain injury, ABI.
I wish to focus on needs within the counties of Clare and Kerry and north Tipperary. I have been actively supporting the work of Dr. Caitriona Crowe and the Living Well with Dementia in South Tipperary project for some time. I also compliment Councillor Richie Molloy on his work for carers in County Tipperary. Of particular importance is the 5 Steps project which, as I am sure the Minister of State, Deputy Finian McGrath, knows, is a sustained and mainstream HSE service delivered in partnership with Family Carers Ireland in south Tipperary, of which Councillor Molloy is manager. All of these projects do vital work, the value of which cannot be over-estimated. We cannot ever credit the valuable work done by the volunteers in these organisations.
An audit should be undertaken in order to embarrass the HSE about how little it does. As we know, Parkinson's disease is a progressive, neurological condition which impacts directly on 8,000 people in the country. What must be kept in mind, however, is that Parkinson's disease, acquired brain injuries and dementia are just some of the neurological conditions that affect individuals and families. I was appalled by a reply I received to a parliamentary question from the Minister of State, Deputy Finian McGrath, in July. It stated:
At present, it is difficult to determine how many people with ME are being seen in neurology ... services nationally.
Information on waiting times per speciality and per hospital is all that is currently available to the neurology programme, and as such we do not have accurate information on the demand on neurology services or indeed other specialties, including:
- Pain Specialists...
- Cardiology etc.
These are the hallmarks of a care system in crisis. The Minister of State and his officials should be ashamed to include this in a reply. He cannot even count the numbers waiting. Perhaps he is not be bothered or he is too embarrassed to do it. It is shocking.
I stood on this side of the House for five years or longer and listened to him as he jumped up and down all the time to say what he was doing. I expected more from him. I did not expect him to give that kind of careless, flippant, unhelpful reply; I, at least, expected him to know how many people needed help. He should at least talk to his officials and assert himself, as he did when he was in opposition. He should not be a mouse; he should have things delivered. He was huffing and puffing on the issue of the international human rights committee which he was going to bring before the Cabinet. The measure is long overdue and I support him in that regard. On the other hand, he wants to introduce abortion on demand for people with disabilities. I ask him to consider his position because of those double standards.
I commend Deputy Margaret Murphy O'Mahony and her colleagues in Fianna Fáil for bringing forward the motion. It is a timely debate for us to have. All of us who saw the shocking "Prime Time" programme last night will be only too conscious of the huge challenges that arise as a result of having family members with neurological difficulties and the problems caused for the patients themselves and also for their carers. It brought home to all of us the shocking lack of services for families facing these challenges. The motion provides us with an opportunity to shine a light on this aspect of the health service. It is yet another area in which there is huge under-investment and a huge level of unmet need and in which the services provided are wholly inadequate and being provided in the wrong place and probably at the most expensive level. This is instead of providing services at community level which obviously achieves greater health results and also much better value for money.
The motion references the 2016 report from the Neurological Alliance of Ireland which was appropriately entitled, We Need Our Heads Examined. There were three central demands in that campaign, the first of which was that we should develop inpatient neurorehabilitation services at both national and regional level and end the unacceptable delays in accessing rehabilitation services. The second was that we should set up community neurorehabilitation teams in every community health organisation. Again, this is about bringing services back into the community, close to where the patients and clients are, where they want to access services and the best results can be achieved. I understand local community services are provided within three of the nine community health care organisations, CHOs, which, again, is an indication of the inadequate provision made. The third demand was that we should invest in long-term, rehabilitation-specific services in the community in order to provide care and support in appropriate settings. This arises because of the fact that, when a younger person has an acquired brain injury or a degenerative brain condition, too often, the only service available for him or her is in a nursing home which was intended to cater for older clients. As we heard again on the programme last night and as we know from the many families who are campaigning on the issue, the nursing home setting which was intended for older people is entirely inadequate for younger people with neurological difficulties.
The motion calls for dedicated multiannual investment in coming budgets in order to develop neurorehabilitation services, particularly in the community, and, as I said, the publication of an implementation plan for the neurorehabilitation strategy by March next year, with a clear timeframe for implementation. Again, this is an example that is very common in respect of the implementation deficit disorder, one of the main conditions that dogs the health service. There is a strategy in place but no implementation. An implementation report was drawn up, but it was met with a scathing response from the Neurological Alliance of Ireland. What we need is a meaningful and real implementation strategy and for it to be delivered by the end of the first quarter next year. I support that proposal.
The motion also calls for the establishment of dedicated community rehabilitation teams in each community health area and investment in 2018 to target current waiting lists in the community, following the outcome of HSE mapping exercises earlier this year. We know that a lot of attention is focused on hospital waiting lists. However, when we consider other hidden waiting lists, for example, for community services such as psychological services, speech and language services, physiotherapy and occupational therapy, as well as all of the critical services which are essential for those who have been involved in an incident or developed a condition, we must ensure they are enabled to be the best they possibly can be, in other words, to develop all of the senses and capabilities that have been affected by their condition or the incident they experienced, to return them to full health as soon as possible. We are not very good at doing this. Generally, when people develop a condition, they are left waiting an interminable length of time. This raises huge questions about the human rights of the individuals affected. They should be supported by the Government and public services to make as full a recovery and to live as full a life as possible. We know that if they are given the right access to quality rehabilitation services at an early stage, many people with neurological conditions such as brain injuries will be enabled to return to a fair degree of normality in their lives.
Currently, a number of people with neurological conditions are, for example, unable to speak. They need speech and language therapy. Several of them are unable to return to work because they have not been able to access rehab. Many of the disabilities in question develop later on for people with neurological conditions, yet they are preventable if there is early intervention and access to rehab. That many young people are forced to live in nursing homes is unacceptable.
It is important that we listen to what we are being told by the Neurological Alliance of Ireland, NAI, in that there are 800,000 people living with neurological conditions and that this figure increases by approximately 40,000 every year. The primary barrier to effective neurological care is the underinvestment and underdevelopment of community services in particular.
We must bear in mind what the Government's priority should be. These are people who have been struck down by conditions or accidents and acquired brain injuries and whose lives, although negatively impacted upon, could be so much better and fuller. In many cases, they could live independent lives if they were supported by the Government with decent public services. That is what we should be doing and that is what these people deserve. It is in the best interests of everyone as a society that people be as independent as possible and live their lives as free from disability as possible.
The plans are set out and it is clear what needs to be done. The strategy needs to be implemented and the Minister of State needs to get on with that as soon as possible.
I welcome the work done by Deputy Murphy O'Mahony and the Fianna Fáil health team in tabling this Private Members' motion. In Our Lady of Lourdes Hospital in Louth, the latest figures for the number of people waiting to get treated at the National Rehabilitation Hospital, NRH, was four, with those four waiting for three months, which is the average waiting time to get a bed in the NRH. In a hospital like Our Lady of Lourdes, which has 235 beds, approximately four beds are occupied at any one time by patients waiting for rehabilitation treatment. This equates to in excess of 360 bed days lost in that three-month period or 1,440 in any one year. Nationwide, there are 126 people on the waiting list for the NRH. That is a great deal of bed occupancy and trolley waiting time that could be alleviated.
I have been told that the NRH prioritises clients based on their rehabilitation potential. As such, many of those waiting never even get to the hospital. Many families have to source private treatment in the meantime and many patients end up in nursing homes. One in three people who require rehabilitation never get it.
Earlier this year, 12 beds at a specialist brain and spinal injuries facility were lying empty due to chronic shortages of staff at the rehab centre in Dún Laoghaire. That was despite a waiting list at the time of 226 patients seeking treatment. I know of many cases where delays in assessments and proper rehabilitation treatment have been detrimental to patients' final prognoses. One such person would certainly be walking now rather than confined to a wheelchair if an assessment and proper physiotherapy had been available early to her.
With Parkinson's disease, there is growing evidence that early intervention may help to preserve the functioning of neurons, reducing symptoms, in particular difficulty with or distortion in performing voluntary movements, slowing disease progression, improving patients' prognoses and, in turn, reducing the overall costs associated with this debilitating disease. Not only would early intervention in Parkinson's cases have a significant impact on health care costs, but it would ease the burden for families who are all too well aware of the detrimental effects of delayed diagnosis.
There have been many cases of people waiting seven to nine months for beds in the NRH. This is frustrating for the patients and their families, as any delay in commencing rehabilitation is detrimental to the final prognosis.
I could make many points about speedier access to MRI scans for diagnosis and the need for investment in that regard but, in sharing time, I am conscious of giving others the opportunity to contribute. We must consider how to get this service correct if we are to progress the available facilities for others.
I speak on behalf of the approximately 750,000 people who have been diagnosed with a neurological disorder. We must bear in mind that more than 25,000 of those are struggling to get the services that they need to prevent disability and support their recoveries from conditions such as stroke, acquired brain injury, multiple sclerosis and Parkinson's disease. Demand for services is likely to accelerate dramatically in light of our ageing population and an increased number of people needing treatment for these conditions.
I commend my colleagues, Deputies Murphy O'Mahony and Kelleher, for raising this important issue. While it is great to hear support from across the House, Ireland's global standing on this matter is very poor. Our services remain underdeveloped and require significant expansion if we are to meet the coming demand, never mind current pressures. We need dedicated, multi-annual investment in forthcoming budgets in order to develop neurorehabilitation services, particularly in the community, in response to the significant level of unmet need and the decades of neglect and underinvestment that need to be righted. An implementation plan for the neurorehabilitation strategy needs to be published by the end of March 2018 with, crucially, a clear timeframe for implementation. We need mechanisms to ensure governance and accountability at the highest levels of the HSE and in the Minister's office and the Department of Health. We also need the establishment of dedicated community teams in each of the nine community health organisations, CHOs, with investment in 2018 to target current waiting lists in the community following the outcome of a HSE mapping exercise earlier this year.
There has been considerable collaboration with the NAI in tabling this motion. I compliment the alliance for highlighting consistently how clinical services are creaking at the seams, with staffing at critical levels. Occupational therapists are doing an incredible job. I know many of them. They need extra resources and staff to help them support those in need.
Our country has the lowest number of consultant neurologists and multidisciplinary specialists in Europe. We have a continuing emergency department crisis, which results in patients often not being admitted to neurology units because beds are unavailable.
Before handing over to my colleague, Deputy O'Rourke, I will say that our country lags far behind the rest of the developed world in terms of neurorehabilitation services. We need to remedy that now.
I welcome the opportunity to contribute on this important issue and acknowledge the good work done by my colleague, Deputy Murphy O'Mahony, in this regard. We want to stay positive, but it is worth pointing out the facts. For example, the implementation plan for the national policy, which was due to be published in June, has still not been published. As my colleague, Deputy O'Loughlin, said, Ireland has the lowest number of consultant neurologists in Europe. This is disappointing.
We need investment and delivery because the services that are required by people who are suffering in this way are not present on the ground.
Despite what we speak about and what statistics we churn out in the House each day, this is not helping people who cannot access the supports they need on a daily and weekly basis. The Neurological Alliance of Ireland reported that 800,000 people in Ireland currently live with a neurological condition. As we know, services in various counties are not good. In my constituency, Kildare North, they are extremely poor.
In 2015 a person who reported to a GP with a brain injury was sent to the accident and emergency in Blanchardstown because there were no facilities in Beaumont. The person spent 13 hours waiting to be seen and two days on a trolley. From there, the person was referred to Beaumont Hospital. Another person who came to me was a constituent who suffered a serious brain injury in 2003 and was discharged without any follow-up care. As a result, he became very ill about three months ago. The family approached the State for support but unless they received some today, they have heard nothing from the State in that regard which is extremely disappointing. The only support he has received is from a voluntary organisation, the Abbey Community Project which has operated in Celbridge for ten years and helps people who have a dual diagnosis or those with mental health difficulties. It receives no State funding, an issue which I have pursued for over a year with the Minister of State's colleagues in terms of trying to give it some support. Without the support of that community group, this individual would have nothing, and has had nothing up to today unless he received help today.
When I contacted the Minister's office in an attempt to secure some support for this man, I was told to refer him to a weekly clinic in Kildare town which was 40 miles away. That was the best that came back from the Minister's office, which is extremely disappointing. Nothing was received from the State. The suggestion from the Minister's office is of no use to someone who is walking the roads, sleeping rough and missing from home because of a condition, resulting from a brain injury, over which he has no control. Why is this the case? It is because the required supports are not in place. We need to turn a negative into a positive, through the work of the Minister of State and the Government, and try to put supports and investment in place to help people who are suffering in this regard and are in urgent need of help. Without services, such people will find themselves in a very lonely place and things could become more serious or tragic for them.
I thank Deputies for their contributions to the debate on the very important matter of neurorehabilitation services which has been raised in the Private Members' motion today. It is clear from the contributions in the House that we are agreed that the work of progressing the implementation plan for neurorehabilitation services is critical if we are to achieve the best possible outcomes for people who require these services.
We are all acutely aware that neurological illness or injury has significant implications for the individual and his or her family, and impacts on their social, educational, vocational and recreational participation. I want to take this opportunity to re-emphasise the Government’s commitment to the area of neurorehabilitation. The commitment in A Programme for a Partnership Government, along with the priority actions in the area of neurorehabilitation identified by the Health Service Executive in its national service plan for 2017, will have a positive impact on the development and integration of these services and on the lives of those people with neurological illness or injury.
The HSE national steering group is tasked with developing a national implementation framework for the national policy and strategy for the provision of neurorehabilitation services in Ireland. The representation on the reconstituted steering group will ensure that the framework has a collaborative and holistic approach. It is of great benefit that representatives are now included on the group from across the whole health service, including the Neurological Alliance of Ireland.
The focus of the national steering group is to develop a framework which can be implemented across the country and the group has agreed an approach to the development of the framework. The proposed managed clinical rehabilitation network demonstration site will test the feasibility of this model to provide neurorehabilitation services nationally. Managed clinical rehabilitation networks ensure that only those patients with the highest levels of need are admitted to the specialised medical facilities at the National Rehabilitation Hospital. Appropriate care for all other neurorehabilitation needs would be met within the network through alternative inpatient facilities and enhanced community rehabilitation teams.
It is, of course, possible for the group to draft a theoretical implementation framework document within a much shorter timeframe. It is very important to note, however, that this approach may not provide a feasible, fit-for-purpose framework which can be implemented nationally. It is for this reason that the HSE has adopted the approach of developing and testing a demonstration model and this work is progressing. In addition, the mapping exercise undertaken by the HSE to identify the levels and gaps of existing neurorehabilitation services is important in order to establish a clear picture of where specialist rehabilitation services are currently being delivered and where the demands are for these services. This will also ensure that the best possible use is made of available resources.
The National Rehabilitation Hospital plays a central role in the provision of neurorehabilitation services to adults and children who, as a result of an accident, illness or injury, have acquired a physical or cognitive disability and require specialist medical rehabilitation. The hospital has a reputation for excellence and provides patients with every opportunity to meet their rehabilitation goals through personalised treatment plans which are delivered by consultant-led interdisciplinary teams which are expert in their fields. Rehabilitation programmes at the National Rehabilitation Hospital are tailored to meet the individual needs of adult and paediatric patients. Existing bed capacity at the hospital was reduced last year by hospital management to enable it to provide a safe and appropriate level of care to patients from within its existing resources.
Following engagement between the hospital and the HSE, funding has been provided by the HSE and a total of four beds have been reopened in the brain injury and spinal cord system of care programmes at the hospital. It is also important to note that additional funding of €0.65 million has been made available towards the cost of opening a further four beds at the hospital as part of the Government’s 2017 winter measures and measures to improve access to hospital care in 2018. It is planned that two of these beds will reopen next week in the hospital’s brain injury programme.
It is also significant that the contracts for new development works at the hospital have been signed and that construction works are now well under way. These new facilities will provide a major enhancement to rehabilitation services in the country. They will have a direct and significant impact on patient recovery by providing an optimal ward and therapeutic environment for patient treatment at the hospital. The design is patient-centred and based on the principles of empowerment, dignity, privacy, confidentiality and choice.
The HSE has a priority action to establish an innovative pilot day service aimed at supporting people with severe acquired brain injuries. This day service is at a very advanced stage of implementation and will provide core specialised services for a particular group of patients. The HSE provides a range of assisted living services, including personal assistant and home support hours to support individuals to live as independently as possible. The HSE is committed to protecting the level of personal assistant and home support hours for people with disabilities, including neurological conditions. Nursing home support can also he an appropriate care option in cases where persons concerned have clinically assessed complex medical and social care needs requiring this form of support.
Stroke represents one of the greatest areas of needs for neurorehabilitation care in the Irish health services and the national clinical programme for stroke has been in place since early 2010 and aims to improve the quality, access and cost effectiveness of stroke services in Ireland. More recently, in 2015, the Minister for Health established a trauma policy for Ireland steering group, chaired by Professor Eilis McGovern, to make recommendations in regard to the development of a trauma system for Ireland. The group completed its final report in July 2017.
It is important to acknowledge the range of excellent neurorehabilitation services which are already provided. It is also important to acknowledge the work that is under way by the HSE national steering group to develop an implementation plan for national neurorehabilitation services. Neurorehabilitation is an area of our health service that requires a collaborative and strategic approach from all of the service providers. Again, I thank the House for the opportunity to address these issues and Deputies for their valuable contributions to this very important debate.
I welcome the Minister of State to the House and I am glad to have the opportunity to make a few brief points. I thank my colleagues for using Private Members' time to debate this motion.
The Minister of State gave a good account of everything that might happen and could happen, what is well under way, what is being investigated and referred to trial models and so on. In the meantime, there are ridiculous waiting lists. I am from the same part of the country as the Leas-Cheann Comhairle and many others in the House, a region comprising 280,000 or more people, which includes Sligo Regional Hospital and Letterkenny University Hospital.
There are two neurologists based in Sligo who cover both hospitals. They are Dr. Daniel Kevin Murphy and another recently appointed neurologist. The Saolta hospital group has made the case that based on the population being seen five consultant neurologists are required in the area. That equates to one per 70,000 patients. I have focused specifically on Sligo Regional Hospital, but the position in Letterkenny University Hospital and other hospitals throughout the country is the same. We can consider the figures for outpatients alone from 28 January 2016. At that stage 338 people were waiting. In a reasonably positive development at the time, only seven had been waiting for over 15 months. The Minister of State and his colleagues have spoken about the progress being made, but there were different figures on 31 October this year, or one month ago.
I will wait to receive the Minister of State's attention. I am glad that the staff of the Debates Office have managed to get a copy of his speech. They might show the courtesy of waiting and asking for scripts after the fact.
On 31 October the figure of 338 people waiting to see a neurologist had become 710, an increase of 110% increase. There is a cost for other health services, support services and charities on which we depend to care for the people concerned as a result of not having an adequate diagnosis early enough and treatments prescribed by neurologists. This cost could be saved by providing the number of neurologists required. The two mentioned are working like slaves and can absolutely not do any more. There was an increase of 110% in the number waiting for an outpatients' neurologist appointment. The Department has provided figures for those waiting more than 15 months. Of the 710 people waiting, 316 have been waiting for more than 15 months, which represents an increase of 4,514% in one year in the number waiting for more than 15 months for an appointment. These figures are from the National Treatment Purchase Fund. There is no metric, analysis, speech that can be written or trial model that could be under way to justify such incompetence and mediocrity.
In Sligo I was involved in a small way in the establishment of the North West Neurological Institute, a charity that does some of the work for the Health Service Executive. Remarkably, the clinical indemnity scheme will not admit it because Mr. Ciarán Breen has stated it is a political matter. The Government should work as hard and as quickly as it can to recruit the five neurologists we require in the region, but will it, please, help the charities which are doing some of the work and admit them into the clinical indemnity scheme?
I thank all Deputies for their contributions and support. I hope the debate will serve to put neurorehabilitation services and the need for them front and centre. I hope Deputies will forgive me - I know that the Minister of State will do so - if I finish on a more local note. It has been estimated that Ireland should have 270 neurorehabilitation inpatient beds for the size of its population. However, we have less than half of that number and none of them is outside Dublin.
With reference to the particular case in the south of the country, numerous reports have highlighted the critical need to provide a dedicated specialist rehabilitation unit to serve the needs of the population of the area. Patients from the south account for one in four referrals to the National Rehabilitation Hospital. Individual reports in 2000, 2003, 2007, 2008 and 2011 all pointed to the need for a specialist medical rehabilitation service to meet the needs of people with neurological conditions in counties Cork and Kerry. The report on the reconfiguration of acute hospital services in counties Cork and Kerry in 2011 published by the HSE clearly states:
Cork and Kerry need an acute rehabilitation medicine service that would provide a post-acute specialist rehabilitation service for acquired brain injury and neurological diagnoses for those between 18 and 65 years of age. The service should be led by a consultant in rehabilitation medicine linked to the NRH in Dublin and supported by a regional rehabilitation co-ordinator and a multidisciplinary professional team, including a clinical neuro-psychologist.
It specifically highlighted that "the presence of specialists in rehabilitation medicine would be of considerable benefit to the health service of Cork and Kerry". It is now six years since the publication of that report and there is still no dedicated specialist medical rehabilitation unit in the south for people with a neurological disability. One part-time consultant is in place, but there are no dedicated beds in any of the local hospitals. I am sure the Minister of State agrees that we need to do much better than this.
I have brought the motion before the House because I believe the case for the provision of these services is overwhelming. It is made with powerful advocacy by the Neurologicial Alliance of Ireland. I will finish with the words of its executive director in a letter to The Irish Times:
Neurorehabilitation services promote recovery and prevent and delay disability. They enable people to go to work, contribute meaningfully to family and community life and, most significantly, avoid becoming dependent on already severely restricted health services. Without such services, people remain unnecessarily in hospital, exist in nursing homes that are not suited to their needs or continue to live with families who are not able to cope.
The case is clear. It is now time to act.