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

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

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

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

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

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

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

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

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

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

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

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

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

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

Statements on the Participation in Sport

April 2nd, 2014. Senator Jillian Van Turnhout speaking on the issue of Participation in Sport: Statements. Seanad Éireann

 

I welcome the Minister. I particularly welcome his openness to all sports and like the emphasis he placed on increasing the participation of women and young people in sport. We need to pay greater attention to this aspect. Previous speakers have referred to the positive role sports play and the benefits are endless. We have a proud sporting tradition in Ireland. One of our proudest moments as a nation was, undoubtedly, hosting the Special Olympics which highlighted our national strengths and celebrated our wonderful athletes.

Sports have many positive effects on society and, as legislators, we have a role in increasing participation and interest. Colleagues have referred to the economic benefits, but I would focus on the physical benefits and mental well-being of society. If we can improve mental and physical well-being positively, this will reduce health care spending in the long term, which everyone would like to see.

The Minister mentioned the GAA. I will not get into the current debacle about pay-per-view television and so on. However, he referred to emigrant clubs. One person tweeted me and asked about creating a role for these clubs which promote the GAA abroad and giving them a voice. There should be a two-way conversation.

Like many colleagues, I was on the edge of my seat as I watched the Six Nations match between Ireland and France which demonstrated the power of sport. We all became video referees that day in deciding on whether there was a forward pass. I congratulate the team, but I also congratulate the national women’s rugby team on its success last year.

We have a fantastic history in sport and the development of new sports. One example is the mixed martial arts, MMA, fighter Conor McGregor who is promoting the sport on the world stage and acting as a role model for a different group of young people by promoting new possibilities in sport. We must encourage the development of new sports. It is imperative that we recognise the contribution of Irish women on the sports field because they encourage participation. Katie Taylor brought back a gold medal from the Olympics Games held in London in 2012. Little work was done in the country while her gold medal fight was on. The participation of females in sport can sometimes be under-reported. It is welcome that RTE has begun to broadcast women’s rugby matches, but I would like other sports to be treated more equally. I do not expect coverage to be equal, but it needs to increase. It is welcome that women’s rugby games are being moved from lesser stadiums to the main grounds such as Wembley Stadium and the Aviva Stadium. This should be encouraged in other fields.

I spoke to a camogie player who wanted to participate in women’s rugby 7s as an opportunity to go to the Olympic Games. Opportunities are opening in sports to be part of the games. Paralympic sports have also developed. I recently read a fascinating article about wheelchair hurling and how it was developing. The possibilities are endless. While preparing for the debate, I learned more about ultimate frisbee and tag rugby. Cricket has also become popular at grassroots level, given the national team’s success. I know many young people who are involved in the sport. Initiatives such as the get-into-cricket scheme are welcome because they provide a significant boost for the game.

We should support all sports to enhance choice. One of the issues I have relates to schools. If pupils attend a large school, they usually have a choice of sports to play, but they do not in small schools. Children are either good or bad at a sport and may not necessarily be exposed to other sports.

That is why I wanted to raise the issue of the French municipalities and the centres sportifs. Bringing sports together in a community is something we really need to look at. We must decide whether club or community will dominate. I would like to see that communities would have a stronger role and when we, as a State, are investing, we encourage organisations to come together.

The Minister mentioned the GAA. In my community, it is not the sole sporting organisation which will have territorial rights on pitches and on its turf where one cannot use it. Even though those pitches and sporting facilities lie idle during certain times of the day and certain times of the year, they have a dominance at one time, they lie idle, but they belong to that sporting discipline and they cannot share it. We need to look at how we can encourage people to share. When we are looking at the sports capital grants, we should ask what other sports in the community will be able to use this facility when it is not actively being used by the particular sporting discipline.

We need to discourage fragmentation and give young people the opportunity, as they do in France, where there can have different sports, such as tennis, swimming and rugby, under the one roof together, working in harmony rather than being seen to be in that competitive space, because we need to give people an exposure to the different types of sports.

I say, “Well done”, to the Minister on the Giro D’Italia. I wish Ireland every success in the tender for the rugby world cup. It is great to see us coming together as an island to work to hopefully bring it here in 2023. Sport is of immense importance.

I thank my colleagues in Fine Gael for moving this motion. It has given me an opportunity to research and learn more, which is part of our role as Senators.

I will finish with a powerful quote that I found from a US legend, Dean Karnazes. He said, “Some seek the comfort of their therapist’s office, others head to the corner pub and dive into a pint, but I chose running as my therapy.” That sums up sport. We should be encouraging people to get out and participate in a community. That is what we should be looking for as a society.

04 March 2014: Quarterly Meeting of the Joint Committee on Health and Children, The Minister for Health, James Reilly TD, and The HSE.

Questions submitted in advance by Senator Jillian van Turnhout and response received:

Question 9: Work undertaken by the HSE’s National Oversight group

Question 10: Allowing Pronouncement of death by advance Paramedics

Question 11: Poor performance in Children’s rights alliance report card 2014

 

Question 9: Work undertaken by the HSE’s National Oversight group

To ask the Minister to outline the work undertaken thus far by the HSE’s National Oversight Group that was set up to coordinate a response to requests for day service or rehabilitative training places for young adults with a disability, and to detail particularly the work undertaken in engaging with young people who require these services and their family members.

Revised Process to support School Leavers and those exiting Rehabilitative Training 2014

In line with the Social Care Division Operational Plan 2014, a revised process is being implemented this year to ensure a more streamlined approach to the assignment of places to School Leavers and those exiting RT places. A summary of key elements of the process is outlined below:

 

  • Providing for the emerging needs of the estimated 1,200 additional young people leaving school and rehabilitative training programmes using a newly developed streamlined approach (€7m and 35 WTE) and for emergency cases (€3m and 15 WTE).

Implement a standardised process to:

  • Identify, in conjunction with the Dept of Education and service providers the young people who will be leaving school or exiting a RT Programme who have a requirement for ongoing HSE-funded supports by 1st February, 2014.
  • In respect of those identified as having a requirement for ongoing support, identify and agree the supports required, with a specific focus on responses to those who have complex service needs.
  • Identify the service providers with capacity to respond to the individuals who require support by 1st April, 2014 and agree the allocation of additional resources in respect of individual placements as required.
  • Advise the school leaver and their families of the placement location and service they will be receiving in September, 2014.  Notification of placement will commence in May and all families will be advised no later than the 30th of June.
  • Implement a communications process with all stakeholders.
  • Building on the learning from 2014 review and refine the process for engagement and implementation in 2015.

 

An important aspect of the new process has been the establishment of a National Oversight Group, consisting of representatives of umbrella organisations, representing the Disability Service Providers, service user representation and senior staff from the health service. In addition, the health service has assigned a full-time Project Lead to work to co-ordinate the implementation of the Project in 2014.

Work has been ongoing on the 2014 process since October/November 2013. The Oversight group met and agreed the timelines. A template was agreed for collection of information regarding each individual seeking to access health funded services. A letter was circulated by the National Council for Special Education to all mainstream schools to ensure that individuals with disabilities and their families would be aware of the revised process. The Health Service Guidance officers engaged with the special schools directly. The National Disability Governance Group, which includes Lead Area managers and disability specialists meets monthly and receives updates on progress.

Following the meetings of the Oversight group the Regional Disability Specialists/Disability Managers engaged with local service providers to ensure a complete profile of each individual seeking to access service was submitted.

Each application is being reviewed to establish if the applicant is appropriate to specialist disability services, has the capacity to attend rehabilitative training programme or attend day services.

In relation to engagement with service users and their families the position is that in Dublin for example Individual meetings have occurred with the following:

a) School Leavers

b) Parents/Guardians

c) Teachers/Principals

d) Clinicians/Health Care Professionals (as appropriate)

 

Continuous communication with school leavers and parents/guardians on any issues or concerns arising regarding transition from school are ongoing with the Guidance service.

I am pleased to report that the deadlines set in the Operational Plan have been met in that in excess of 1400 applicants were received by February 1st 2014. The next milestone is 31st March and Disability Services are online to meet that target date where a review of service users’ needs and current service provision will be completed.

Tbe process commenced on October / November 2013

  • We achieved an agreed approach across the disability sector.
  • We will identify and implement a prioritisation process by the end of April 2014
  • We will consider appropriate placement options by end of May 2014
  • We will advise Individuals/Parents/Guardians of placement no later than 30th June 2014

A summary of the current position is that:

A total of 1407 number has been identified, 905 school leavers, 427 RT exits work is continuing on a further 75 who have been classified as other or no category.

Throughout the engagement a range of challenges continue to arise as the process is streamlined. The process is flexible enough to address many of these however a consistent theme that is emerging relates to some locations where the physical infrastructure is at maximum capacity and alternative accommodation will need to be identified. The health service is committed to appropriately supporting this group of young people to ensure that optimum outcomes are achieved

 

Question 10: Allowing Pronouncement of death by advance Paramedics

To ask the Minister for Health/HSE to give an update on progress regarding allowing pronouncement of death by advanced paramedics (as is allowed in other jurisdictions but currently not in Ireland) as recommended by the Pre-Hospital Emergency Care Council, and on allowing pronouncement of death by senior nurses. 

 The Pre-Hospital Emergency Care Council (PHECC) is responsible for clinical practice in pre-hospital care. PHECC approves clinical practice guidelines (CPGs) for all aspects of the clinical work of registered paramedic practitioners in Ireland.

There are two key PHECC CPGs in relation to the death of a patient – for recognition of death and for cessation of resuscitation. The procedures set out in these guidelines allow practitioners to cease treatment and resuscitation where a patient cannot be revived.

Currently, Irish paramedics, unlike paramedics in other jurisdictions, do not pronounce death. After a paramedic makes a clinical decision to cease treatment, a medical practitioner is required for pronouncement of death.  I am advised that PHECC is examining this issue through the Forum on End of Life in Ireland, with a view to engaging in broader consultation on this matter and developing appropriate and recognised clinical and legal procedures to resolve it.
The Nursing and Midwifery Board of Ireland (NMBI) is responsible for specifying standards of practice for registered nurses and midwives. NMBI has developed a Scope of Practice framework to enable decision making and development of practice for all aspects of a nurses’ clinical practice in Ireland. In addition NMBI provides guidance to nurses and midwives on their scope of practice and has published professional guidance to nurses regarding their scope of practice for pronouncement, verification or certification of death. The guidance outlined the processes required to develop an organisational policy to include the appropriate clinical governance supports and the professional responsibilities and authority for nurses to be involved with the pronouncement of death in a care setting. The HSE is consulting with the Directors of Nursing Reference Group on this matter.

 

Question 11: Poor performance in Children’s rights alliance report card 2014

To ask the Minister to give an update on the worrying E Grade his Department received for Mental Health in the Children’s Rights Alliance Report Card 2014, with emphasis on a number of key areas including the need to ensure all children under 18 receive age-appropriate and timely mental health services and treatment and can the Minister advise when the Child and Adolescent Community Mental Health teams will have the appropriate provision of in-patient beds and the 150 staffing posts filled to achieve this end. 

 

The Government has prioritised reform of all aspects of mental health services in line with A Vision for Change, including additional and improved quality care for children in both residential and community based settings. Total HSE Mental Health funding in 2014 is significant at around €766m. In this context, additional funding of €90 million, and around 1,100 new posts, has been provided over the last three Budgets. This has been primarily directed to strengthen Community Mental Health Teams for adults and children; specialist community mental health services for older people with a mental illness, improving services for those with an intellectual disability and mental illness, and enhancing Forensic Mental Health services.

Key to developing Child and Adolescent Mental Health Services (CAMHS), as per A Vision for Change, is the establishment of 99 multi-disciplinary CAMHS Teams providing acute secondary mental health care in the community, including hospital liaison and Day Hospital services. In 2008, there were 54 CAMHS Teams. There are now 66 Teams in place – 60 Community, 3 Adolescent, and 3 hospital liaison mental health teams.

The additional €90m provided for mental health over 2012–14 is being used, in part, to expand and enhance the skill mix of CAMHS Teams.  Around 230 new posts were allocated to CAMHS Teams over 2012-13, and recruitment of these is well advanced.  Of the 150 posts approved in 2012, 136 or 91% are complete with 8 further posts at an advanced stage in the recruitment process.  Of the 80 posts approved in 2013, 35 or 43% are complete, with a further 18.5 or 23% at an advanced stage of the recruitment process.  In summary, of the 230 new posts approved to CAMHS in 2012 and 2013, 197 or about 85% have been filled or are well advanced in the recruitment process.  Outstanding CAMHS posts will be filled as quickly as possible.

There are a number of posts for which there are difficulties in identifying suitable candidates due to various factors including availability of qualified candidates and geographic location. Alternative approaches being considered for posts not fillable in the normal way.

Just over 14,000 referrals were received by the Child & Adolescent Mental Health Teams in 2013.  This represents nearly 1,000, or 8% more, than projected in the HSE National Service Plan 2013, while the target of 70% of referrals being seen within 3 months was maintained.

A Vision for Change recommends the provision of 80 Child and Adolescent psychiatric in-patient beds nationally.  In 2008, there were 16 such beds and at present there are 51 beds operational country-wide, with more planned.   Capacity will be enhanced also, with the completion of the CAMHS Forensic Unit as part of capital developments now underway for the National Forensic Mental Health Service, and the National Children’s Hospital. In addition, improved community based services, coupled with increasing bed capacity, are all aimed at discontinuing the practice of placing children and adolescents in adult acute in-patient units, except in exceptional circumstances.  Admissions of children to adult units have decreased by almost 60% from 2008, when there were 247 reported, to a provisional figure of 106 in 2012.

The review of the Mental Health Act 2001, already well progressed, is a key step in providing a revised and more modern mental health legislation in this country. The Programme for Government contains a commitment to review the Act, informed by human rights standards and consultation with service users, carers and other stakeholders.

The review has been delayed due to a number of factors, including the wishes of members of the Expert Group to first see details of the Assisted Decision Making (Capacity) legislation, which was published in June 2013. Due to the high level of inter-connectivity between both sets of legislation, members of the Expert Group reviewing the Mental Health Act felt it would be necessary that the Capacity Bill should be finalised before they completed their own review.

Work is continuing on the completion of the report of the Expert Group, and members are carefully deliberating, re-examining and refining their recommendations on key central issues such as consent to treatment, capacity, criteria for detention, and treatment of children under the Act. It is expected that the final report will be completed in the near future, after which its recommendations will be considered at Ministerial level.

While noting the contents of the recent report by the Children’s Rights Alliance on Mental Health services, real and significant improvements have taken place on implementing A Vision for Change and modernising mental health services across the country over the last three years.  Nonetheless, historic deficiencies remain to be addressed.  The aim is to strive for equity in providing high quality services, while balancing residential and community-based provision.  This approach has already been proven in many areas at local level. The Government will retain its commitment to mental health, and focus on up-grading all aspects of mental health care, in line with evolving service demands and resources available overall for the Health sector, for 2014 and beyond.

to move to the following access targets:

–          6 month target inpatient / day care

–          9 month target for outpatient

–          again with hospitals effecting full compliance with performance targets in the first half of the year and subsequent maintenance for the remainder of the year

The Lancet

In July 2021, Jillian co-authored an article in the world-renowned medical journal “The Lancet”