Epilepsy Service Provision

Private Members' Business – in the Northern Ireland Assembly at 3:30 pm on 3rd October 2016.

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Photo of Caitriona Ruane Caitriona Ruane Deputy Speaker 3:30 pm, 3rd October 2016

The Business Committee has agreed to allow up to one hour and 30 minutes for the debate. The proposer of the motion will have 10 minutes to propose and 10 minutes in which to make a winding-up speech. All other Members who wish to speak will have five minutes.

Photo of George Robinson George Robinson DUP 3:45 pm, 3rd October 2016

I beg to move

That this Assembly commends the work of the Assembly all-party group on epilepsy and the Northern Ireland advisory council of Epilepsy Action; and calls on the Minister of Health to establish a patient-led approach to epilepsy service provision, with particular emphasis on the protection and extension of epilepsy nurse specialists, and the creation of a database that will enable service provision to be directed towards the most used service areas for the benefit of the 20,000 people in Northern Ireland who live with epilepsy and their families, and to ensure the best use of resources.

I declare an interest as chair of the all-party group. I welcome the opportunity to bring the debate to the House and to highlight issues that need to be addressed in order to ensure a positive future for people living with epilepsy and value-for-money, targeted health services. I must begin by paying tribute to all those in the medical profession who are grossly overworked but still care without complaint for people who have epilepsy. Neurologists, specialist nurses and the Epilepsy Action advisory council for Northern Ireland all work diligently to improve lives, health services, and public awareness of the condition.

The motion calls for the creation of a database especially for people with epilepsy, as that would be the cornerstone of future service development. Most debates are littered with impressive facts and figures about service provision, patient numbers and even mortality rates. However, those facts cannot be used today because they do not exist: no definitive information is gathered on a Northern Ireland-wide basis about the number of people who live with epilepsy, misdiagnosis, or the incidence of sudden, unexpected death from epilepsy. We need a database; we need facts in order to accurately deliver services to people with epilepsy.

In June, the new Minister told me in answer to a written question that there are no plans to develop a database specifically for epilepsy. There are databases for renal cancer and for MS patients, and I welcome those because they accurately inform the Department how to plan future services. Minister, in 2014, 35 people died in Northern Ireland as a result of epilepsy. That is unacceptable. With any other condition, there would be a public outcry. This debate is partly about preventing those deaths. It is up to you to spearhead the solution. I ask you to do that.

A major step is making a database the central core of service planning for the future. The all-party group report points out that exact figures were not provided by any trust on many issues. I ask the Minister to plan a database as a matter of urgency to address the situation. That single action will lead to service development that benefits patients and saves money.

Photo of Caitriona Ruane Caitriona Ruane Deputy Speaker

I thank the Member for his contribution.

Photo of Ian Milne Ian Milne Sinn Féin

I am grateful to the Member across the way for bringing the motion before the Assembly. I welcome the opportunity to speak on this very important issue and also to acknowledge the work and commitment of the all-party working group, Epilepsy Action, and all those who treat and support people living with epilepsy. The role and value of those who provide care, both medical and in the home, cannot be overestimated.

When we think about epilepsy, we think about seizures, but that, to some extent, simplifies the condition. It masks the fact that there are over 40 different types of epilepsy and therefore at least 40 different types of seizure. It masks the difficulty in finding the right diagnosis, and therefore the right treatment, for individuals, and the frightening and confusing experience that it is for those who are affected and those around them. Epilepsy is a serious condition that affects people of all ages. Many are born with it and others will develop it in later life, usually as a result of a stroke, brain surgery or injury. Depending on the severity of the condition, it can impact on a person's career choice, independence and ability to drive, to mention just a few.

Sufferers have a right to expect the best possible care available. Self-care, a healthy lifestyle and timely reporting are important elements of managing epilepsy, but so too is having the right support at the right time.

The motion calls for:

"a patient-led approach to epilepsy service provision, with particular emphasis on the protection and extension of epilepsy nurse specialists".

Epilepsy Action, in a recent paper, highlighted the value of those nurses in providing patient advice and support in managing their condition. It also pointed to the potential cost savings as a result of fewer hospital admissions and follow-up appointments with GPs and consultants.

Understanding your condition and treatment, face-to-face support, and appointments at intervals appropriate to your care needs are important elements of a patient-centred approach. From the information given, I can certainly see the advantages of that focused and well-informed service, and I commend the nurses who are fulfilling those roles.

The motion also calls for the creation of a database, or epilepsy register, that would assist in targeting provision and cover all health trusts in the North. While I have no doubt that patient records are maintained and kept to a high standard, a database that records additional information, or, indeed, similar information in a different format, allowing it to be compared and utilised for service planning, research and to support individual clinical care is certainly not without merit.

The motion is effective in highlighting these issues and in raising awareness of the complexity of the condition. I thank the Member across the way for proposing the motion, and I support it.

Photo of Jo-Anne Dobson Jo-Anne Dobson UUP

I welcome the opportunity to contribute to the debate as a member of the Health Committee and the all-party group on epilepsy.

As has been highlighted, epilepsy affects an estimated 20,000 people in Northern Ireland. In my family, my nephew Matthew lives with it every day. A smaller number of those people receive monthly treatment. However, services continue to struggle to cope with current numbers, so it is clear that there needs to be improvement. As was articulated by Members during the previous debate on epilepsy, in May 2013, there are shortages in the number of medical staff needed to deal with this specialty.

For so many affected by epilepsy, self-care is an integral part of daily life. This often involves family members, friends and work colleagues who know the condition, the triggers and how best to look after their loved one during an epileptic episode. This can lead to constant worry and concern, and really makes the need for increased research and family support for people once diagnosed.

The effect of epilepsy on self-esteem, especially for young children, must never be overlooked. We know that epileptic episodes can often be triggered by work, especially long hours, or when people are under stress. However, that is for those who are able to continue their career.

Looking into the issue ahead of this debate, I was disappointed to learn that, despite the question being asked in the House, there are no plans to develop a database for epilepsy patients. It is also concerning that, historically, the Department does not collect data for expenditure on epilepsy services as that cannot be broken down within neurology. Add the fact that the Department could not provide information on the number of patients who have presented at emergency care departments, and that makes a firm case for change.

We cannot hope to manage what is not being effectively measured. That is why it is important, as the motion suggests, to bring forward a database that will enable service provision to be measured, and, therefore, targeted.

I agree with the motion in endorsing the important work of the all-party group on epilepsy and the expert support of Epilepsy Action NI. Its report, produced in autumn 2014, into epilepsy service provision across the five local trusts brings out a number of interesting findings. However, the most noticeable issue is that information on epilepsy varies from trust to trust, especially regarding the frequency of epilepsy and neurology clinics.

The report also argued for the need to expand the use of, and investment in, specialist nurses. This could alleviate some of the pressures experienced by consultant neurologists. However, the conclusion, which focuses on the modernisation of neurology, is the most helpful. One trust suggested that this would require ground structures, people and information to allow management of chronic epilepsy in the community, with timely and relevant support from specialist staff in hospitals. It also focuses on the need for a clear pathway of referral from primary to secondary care and, crucially, a Northern Ireland-wide database to maintain records for people with epilepsy. However, a database cannot stand alone; it should be the start of measuring what is currently not being managed as efficiently and effectively as it could be.

In conclusion, we had a debate in the Chamber in 2013 and an important report by the all-party group in 2014. Action must therefore follow. We have had the debate, the conclusions and the working groups, so I look forward to the Minister's contribution and, I hope, assurances that action will follow. I once again commend those who tabled the motion for raising the issue in the House, and I truly hope that a patient-led approach will follow.

Photo of Mark Durkan Mark Durkan Social Democratic and Labour Party

I also support the motion and would like to congratulate the proposer and members of the all-party group on Epilepsy, who have worked hard and worked together to bring the motion here today. It is something that I expect everyone to be singing from the same hymn sheet on. For that reason, I am not going to speak for too long today. I know that my colleague Gerry Mullan, who is a member of the all-party group, will speak later in the debate and make some more substantive points.

Regarding the condition itself, and the impact that epilepsy has on individuals — a few Members have referred to that — it is fairly evident that this condition can be extremely debilitating. However, on reading through the information pack, I was surprised at just how common epilepsy is and how many people we see every day and possibly talk to every day who are living with the condition and doing their best to keep it invisible. However, it needs to be treated; they need to be treated. They need to have the security of knowing that they will be taken care of, that their condition will be managed and that they will be helped to manage their condition. That is why I think that a database is not a particularly big ask, and I do not think there should be much, or any, resistance to it. It could be a cost-effective means of establishing who needs what care. It will make it easier for people to get the care that they need, and, importantly, it will make it easier for people to give the care that is needed.

The shortage of specialist staff is an issue that, I am sure, causes great concern to all MLAs. Sadly, it is not a problem that is exclusive to the condition of epilepsy.

Photo of Doug Beattie Doug Beattie UUP

I thank the Member for giving way. Would he agree with me that this is not just a case for the Department of Health but also a case for our Education Authority? When we send our kids to school, it is the teachers who identify the triggers, see the signs before a seizure and have to deal with the seizure and the after-effects of the seizure. If I can name-drop today, Mrs Leeman of Carrick Primary School in Lurgan, has just received her training for the treatment of my grandson, who has epilepsy.

Photo of Caitriona Ruane Caitriona Ruane Deputy Speaker

The Member will have an extra minute.

Photo of Mark Durkan Mark Durkan Social Democratic and Labour Party 4:00 pm, 3rd October 2016

Thank you. I can assure the House that I will not need the extra minute, but I certainly concur with what Mr Beattie says, and I am sure that the Minister will too. She has previously made public the importance of cross-departmental collaboration on a whole range of issues, and this is certainly one of those, given the massively important and early role that educators play in people's lives.

I will go back to the issue of the shortage of staff and a situation that materialised or developed in my own constituency a few years ago. We had a brand spanking new piece of ECG machinery to carry out tests and give treatment to people suffering from epilepsy, however there were no nurse or staff there to use it. Day and daily, children and families had to drive past Altnagelvin on their way to Belfast to get work done and treatment given that they could and should have been getting closer to home. It would have made life a lot easier for everyone.

The report from Epilepsy Action NI is a very useful document. It highlights many issues, many — if not all — of which will be touched on today by other Members. It is very sad that a lot of these issues are not exclusive to epilepsy and you see very similar things, particularly with other neurological conditions.

To conclude, I echo Ms Dobson's call for action. It is well and good that we have these debates and raise the issues and air our concerns, however what people really want to see is action coming out of them. That is how we will be judged at the end of the day.

Photo of Paula Bradshaw Paula Bradshaw Alliance

I support the motion. This is, of course, a very significant issue. No one here today could have any difficulty with the text of the motion, and nor would anybody deny that it is important to put it on record for the 20,000 people and their families living here in Northern Ireland. Epilepsy is a condition that does not discriminate; it can strike any one of us at any time, and it is a condition that can have a devastating impact on the quality of life and well-being of the sufferer.

Like other Members, I have no hesitation in supporting the work of the Northern Ireland advisory council of Epilepsy Action and other epilepsy support groups, and emphasising the huge importance of their work. One thing I would say, however, is that over the summer months, like many people on the Health Committee, I met different condition-specific lobby groups and charities, and with all due respect to epilepsy sufferers, this motion could be brought forward for any one of those conditions.

There is no doubt that the answers are within the motion here, in terms of wider health reform. We need expert-led multidisciplinary teams; we need more nurse specialists; we need better workforce planning and data management; and we need better use of resources. The motion is 100% correct in all of that, but to do it all, we need reform of the entire Health and Social Care service for epilepsy, and indeed, all of the other conditions. Such reform would probably deliver a type of shift left, to ensure that conditions such as epilepsy are properly diagnosed in the first instance; to ensure that information is available to people concerned about them at the outset; and to plan support services and treatments more effectively, especially among primary care providers.

It would be interesting to know if this is the type of reform proposed in the expert panel report, as chaired by Professor Bengoa, but of course, as we know in this Chamber, we are being denied access to the report. I am grateful that the Minister is here today, and I challenge her to publish the report as soon as possible. It is important that we, as Health Committee members with an elected mandate, and many people within the sector with the expertise, should have view of it, so that we can all contribute and have a consensus on its delivery. The Health Committee Chair, who is in the Chamber as well, said at the outset of the Assembly term that she wanted the Committee to work together, but this is impossible while we are denied access to the report. I trust that, in the spirit of cooperation that she rightfully proposed, she will join me today in calling for the immediate publication of the report. It is only once we seize the need to implement a proper reform programme for Health and Social Care services, with better data and workforce planning, and more specialised and primary care cooperation, that the outcomes proposed in this motion will become a reality.

Photo of Gary Middleton Gary Middleton DUP

Like others, I begin by thanking my colleagues for bringing this important motion to the House. I want to recognise and congratulate the APG on epilepsy on the work that it has carried out to date to support and advocate on behalf of people with epilepsy. I also recognise the work of Foyle epilepsy support group and, in particular, Keith Cradden for his tireless efforts in raising awareness of the condition.

Whilst a lot of work has been done, there is still much more to do to ensure that epilepsy has its rightful place in our health system and that it is seen as a chronic condition that needs greater attention, greater support and much less stigmatisation. Many people who have epilepsy do not say that they do. When we discuss epilepsy, we always hear people saying, "My friend has epilepsy" or "I know someone who has epilepsy". With the numbers being so large, it is inevitable that we all know somebody who has the condition.

The motion calls for actions to be taken to go some way in addressing the many concerns around provision for people with epilepsy. First, there is establishing a patient-led approach. This is important when dealing with issues directly affecting the life of an individual. Whether it is having an impact on their health, their education or their employment, the patient should have an input to the services they require. Obviously, that approach must be evidence-based.

Secondly, there is the epilepsy service provision itself. I have spoken to people with epilepsy and colleagues on the APG, and it is clear to me that they not only want to protect the services already there but want an extension of those services. That will not only help patients with the condition; it will have an impact on the wider health system through the reduction of their dependence on other specialists. More importantly, it will have an impact on the number of people who die with the condition. We need to ensure that we have the right support at every level.

There is no doubt — there should be no doubt — about the value of epilepsy specialist nurses. They provide a crucial source of support and advice and enable many patients to manage their epilepsy effectively and remain independent in the community. The APG report identified trusts in Northern Ireland that did not have those specialist nurses and looked to other trust areas for support. Without that cover locally, epilepsy patients have to travel to other areas, increasing the time for assessment and treatment. More epilepsy specialist nurses will not only result in a better service for patients but could bring about savings for the health service.

Finally, there is the creation of a database. As we all know, up-to-date, accurate information is something that our health service needs and relies on to ensure that the best possible and most effective care is available. Epilepsy should be no different. The database would provide information and evidence for the targeting of services to areas of need and ultimately reduce misdiagnoses and waiting times. Another use for the database would be to provide a basis for gathering information on the relationships between conditions. That is important in terms of links with autism, for example, as 46% of children with autism also have seizures. It is important that we share that information across the board. We must understand the interrelationship between epilepsy and other conditions but also that between epilepsy and life restrictions in terms of employment, social services or people having to give up their education due to a lack of support.

I fully support the motion and the calls within it. We all recognise the pressures that our health system is under; however, the steps proposed will not only benefit the 20,000 people in Northern Ireland with epilepsy but, I believe, will have an impact on the health service.

Photo of Pat Sheehan Pat Sheehan Sinn Féin

I welcome the opportunity to speak on the motion as a member of the Health Committee. I thank George Robinson for tabling the motion. I commend the all-party group on epilepsy and the work it does in shining a light on the needs of epilepsy patients and the difficulties they face. Epilepsy Action also plays an important role, and its contribution to helping those who suffer from epilepsy should also be commended.

There is no doubt that a diagnosis of epilepsy can have a devastating impact on an individual and his or her family. Epilepsy, as we know, is most often diagnosed in childhood, but it can occur at any time and can have severe consequences on the ability to work, drive a car and, basically, lead a normal life.

Concerns have been raised about long waiting times for neurology appointments, which, of course, leads to delays in diagnosis and treatment. Waiting times are a concern for all of us in the Assembly. I acknowledge that the Minister has spoken on a number of occasions about her determination to reduce waiting times right across the health service. I hope that there will be an improvement, at least in the medium-term future.

As with any medical diagnosis, looking after oneself is vital. Staying healthy is key. Along with that, patients should have access to the highest quality of care, from their GP through to the specialist nurses and neurologists. It is clear, however, that access to the highest quality of care is not always available. I acknowledge that the Department has established a regional group to consider the modernisation of neurological services, including epilepsy. As part of that work, the Public Health Agency has recently established a regional neurology nursing group, and planning for epilepsy services will be included in the group. However, given the wide discrepancy between Epilepsy Action's figures and the trusts' estimates of the number of epilepsy sufferers, I ask the Minister to look again at the possible creation of an accurate database. Planning services and resourcing them require an accurate database. I support the motion.

Photo of Robbie Butler Robbie Butler UUP

I apologise for not being here at the start of the debate.

I commend the motion on epilepsy service provision. I do not think that anyone could fail to be moved by the story that I listened to this morning on local radio about the young man who suffers from epilepsy and his mother's heartfelt plea for greater help with her son's plight as they live with the dangers of epilepsy every day. It was alarming to hear that their route to health will entail a transatlantic journey; sadly, it will not be met here in Northern Ireland.

As stated in the motion, 20,000 local people live with epilepsy. Epilepsy is defined as a tendency to have recurrent seizures caused by a sudden burst of excess electrical activity in the brain, causing a temporary disruption to the normal messages passing between brain cells. By its very description, it is a condition that greatly impacts on the people who suffer from it. A diagnosis can come as a worrying blow, and, as we all know, it can greatly impact on areas of daily life as basic and fundamental as driving, as Member Sheehan mentioned.

Epilepsy has a worrying misdiagnosis rate, however: up to 20% or 30%. As a result, it is a real possibility that people with the condition in Northern Ireland are being left in the system, where their needs are never identified. That, in turn, contributes to a rate of unscheduled care that is far higher than normal. We would not for one moment tolerate such a rate of misdiagnosis for cancer. However, it is the sad reality for epilepsy. Of course, we do not have that rate of misdiagnosis of conditions such as cancer, principally because suspected cases of cancer are referred to a specialist — rightly so. Epilepsy sufferers are most regularly seen by a general physician with no specialist knowledge of the condition. That is a criticism not of those doctors but of a system that does not best signpost patients to the timeliest and most effective path of support.

In addition, in some areas of Northern Ireland, the limited specialist services are next to non-existent. As a result, health outcomes for people with epilepsy not only in Northern Ireland but in the UK more generally are very poor.

In particular, I would like to raise the plight of children and young people with epilepsy. A wealth of research reveals that they have a lower quality of life than peers who have other long-term conditions, such as asthma and diabetes.

Timely access to appropriate services is essential in the diagnosis and treatment of suspected epilepsy. MRI scans are particularly important, yet, as my party previously revealed, waiting times for a scan sharply increase in areas such as the Southern Trust, with some jumping from nine weeks to as many as 16.

The provision of specialist nurses across Northern Ireland is a poor. This should be easily addressed with better NHS workforce planning that takes account of the need to train epilepsy specialists with consultants and nurses.

I hope that the debate will act as a timely prompt for the Minister that the sporadic level of service provision is no longer tolerable. I call on her to extend nurse specialists; to carry out a wider epilepsy needs assessment; and to assist in the development of a database that will ensure that the appropriate support mechanisms are in place to ensure that people are receiving the appropriate and timely care.

Photo of Gerry Mullan Gerry Mullan Social Democratic and Labour Party 4:15 pm, 3rd October 2016

I speak today as a relatively new member of the all-party group on epilepsy. However, what I am not new to is the impact that epilepsy has on the many people in my constituency who suffer from the condition. In this regard, I thank Mr Robinson for bringing the motion to the House today.

One of the biggest barriers for sufferers of epilepsy is, in my view, the stigma that is associated with it. I am glad that the debate allows us to address a lot of those stigmas. Epilepsy is a large-scale, chronic condition that directly impacts on the lives of 20,000 people in the North, as Members have said, and around 40 people lose their life to the condition every year.

Although we have witnessed many advances in treatment and managing the condition, living with epilepsy has a wide-ranging impact on all stages of life, and I want to address that here today.

Across the North, children with epilepsy are being severely disadvantaged in school, which is leading to underachievement and impaired social development. It is important that the Assembly recognises that early intervention is critical for children with epilepsy to ensure that they get the best possible support at the earliest opportunity.

It has, as already referred to, been estimated that some 46% of children who have autism also have seizures. When we in the Chamber look at issues like the statementing process and the colossal waiting list for child psychological assessments, we must also bear in mind their impact on children suffering from epilepsy. All have a knock-on effect, and it is important that we have an intergovernmental, cross-disciplinary approach to tackling the issues facing children with epilepsy.

Epilepsy in adults can have severe consequences, as it is a very difficult and unpredictable condition. There are people who have seizures every 10 to 15 minutes, and this has an impact on their health, employment and social well-being. I know first-hand because I have a neighbour with chronic epilepsy who has to wear a helmet to protect her from falls during seizures. She is afraid to go out, she cannot socialise and she needs round-the-clock care. This is the harsh reality that many sufferers of the condition live with daily. We can only imagine what it must be like for someone who has to wear a helmet, especially a woman. It impacts completely on her dignity as a human being.

It is important to remember that a significant number of people with epilepsy have avoidable seizures. That is what makes the debate and the work of the all-party group so important. If the correct treatment is given at an early stage, many of the negative consequences associated with the condition can be avoided, for example, the loss of employment, or having to give up studies, due to a lack of support. Following diagnosis, it is important that there is a pathway to ensure that people with epilepsy are properly supported. Often, that reduces the ongoing bills in the health service. There are guidelines from the National Institute for Health and Care Excellence that lay out a clear pathway, where there must be a wrap-around service in place following GP referral and there must be access to specialised nursing.

I know that there are issues with misdiagnosis in GP practices and delays in referral to consultants, and that has already been spoken about today, but equally important —

Photo of Caitriona Ruane Caitriona Ruane Deputy Speaker

I ask the Member to bring his remarks to a close.

Photo of Gerry Mullan Gerry Mullan Social Democratic and Labour Party

Statistics show that across the North there are only about 10 epilepsy specialist nurses, with only a 0·5 whole-time equivalent in the Western Trust.

Photo of Caitriona Ruane Caitriona Ruane Deputy Speaker

The Member's time is up.

Photo of Michelle O'Neill Michelle O'Neill Sinn Féin

I thank the Member for proposing the motion, which provides us with the opportunity to consider the services provided to those living with epilepsy. I thank all those who made considered and valuable contributions throughout the debate.

Like others, I start by recognising the work of the all-party group on epilepsy, as it has shown a clear commitment to highlighting the needs of epilepsy patients. I would like to put on record my appreciation of the valuable contribution that Epilepsy Action makes in our bid to improve the lives of epilepsy sufferers.

I also want to pay tribute to the hard-working epilepsy nurses, consultants and all the Health and Social Care staff who play such a vital role in the delivery of epilepsy care in hospitals and in the local community.

A diagnosis of epilepsy can have a tremendous impact on an individual and their family, and many Members referred to that during the debate. Apart from the physical impact on health, epilepsy can also have significant repercussions on an individual’s ability to work, provide for a dependent family, and their ability to live a normal life.

Epilepsy is not a single condition; there are over 40 types of epilepsy, consisting of at least 29 syndromes and a further 12 or so clinically distinct groups, defined by the specific cause or underlying cause. Estimates by the Health and Social Care Board indicate that there are between 7,000 and 9,500 people living with epilepsy. It is, of course, fundamentally important that they receive the care and support that they need to lead an active and normal life. The incidence of epilepsy here is estimated to be around one in 100, and that is broadly similar to estimated incidence rates in Britain and in the South of Ireland. Epilepsy can start at any age, but it most often begins during childhood. It is often not possible to identify a specific reason why someone develops the condition, although some cases, particularly those that occur later in life, are associated with damage to the brain.

Epilepsy is most often diagnosed after patients have had more than one seizure; that is because many people have a one-off epileptic seizure during their lifetime. The most important information needed to make a diagnosis is a description of the seizures by the patient and by someone who witnessed the event.

It is also important to be aware that epilepsy is not something that can be cured overnight; it is a long-term condition that many patients will have to deal with throughout their life. Medical treatment is, therefore, only part of dealing with epilepsy. As with other long-term conditions, it needs to be managed, and patients and their families play a pivotal role in that.

The contribution of the patient in making the diagnosis and in the management of the condition supported by clinical staff cannot be ignored. The key to that is ensuring that appropriately trained staff, working with patients and their representatives, design and deliver care and treatment pathways that are patient-led and tailored to people's lives and circumstances.

The specialist epilepsy nurses in each of the five health and social care trusts already play a key role as a contact point for patients and a valuable support for GPs and primary care teams in managing the care of these often vulnerable patients. I want to see that specialist service enhanced, and a regional group is working on the modernisation of neurological services, and that includes epilepsy. As part of that work, the Public Health Agency has established a regional neurology nursing group. One of the group's functions is to review the staffing complement for all neurological nurse specialist posts, including epilepsy provision, across the North.

The group will also consider future models of service delivery aligned to patient needs, succession planning for staff and, most important, ensure that there is sufficient capacity in teams to meet the demand on services and that people can access the treatment and information they need.

The motion also highlights concerns regarding the creation of a database to aid in the care of epilepsy sufferers. While an epilepsy database does not currently exist, I am assured that the HSC trusts maintain medical records for all patients and their care is documented accurately in those records. Details captured include an account of the advice and support offered, the investigations required and the treatment options. However, there is no doubt that improvements in medicine are at least partly driven by better understanding and better analysis of the evidence and information available.

Condition-specific databases can help to inform how services and treatment are structured and delivered and can provide a more detailed picture of what works and what needs to be improved. Technology and data can be great enablers of quality improvement, and it is important that we exploit them to drive innovation and a better service for patients. I have therefore asked my officials to look again at what information we hold and whether there may be merit in creating a distinct database for epilepsy.

As Minister, I am committed to ensuring that Health and Social Care provides the best possible services for epilepsy patients within the resources available to my Department. I look forward to working in partnership with the all-party group and Epilepsy Action. I urge them to continue their important work representing the needs of patients and their families, and I will continue to work in partnership with them in the time ahead.

Photo of Paula Bradley Paula Bradley DUP

I start by also thanking my party colleague George Robinson for tabling the motion and asking me to countersign it. I also thank and pay tribute to the all-party group. I sat on the all-party group in the last mandate and saw at first hand just how conscientious and focused it was in trying to make a difference for people who suffer from epilepsy. The third group I want to thank is our Research and Information Service for what, I imagine, was a very challenging task in trying to find information on epilepsy services and statistics in Northern Ireland, because, as we know, those specifics are few and far between. It has been so difficult to collate the information due to the lack of a database and the notes being kept. I know that that has been said before in the Chamber, but we have not had too much overlap in what has been said here given that we had such a small amount of information to work on today. I definitely commend Members for that.

We know that the number of people with epilepsy living in Northern Ireland is around 20,000. I think that Ian Milne, the Minister and others mentioned that there were about 40 types of epilepsy and 40 types of seizure, so it comes as no great shock to us — Robbie Butler brought this up — that there is misdiagnosis. We know that that happens on a regular basis. People are unnecessarily given medicine that has severe effects on them, and others are not being diagnosed and have to live with the severity of that.

It is timely that we discuss this today, given that we are all looking towards the future of Health and Social Care and even the reconfiguration of services. In the last mandate, through various consultations, there was overwhelming advice that long-term conditions, of which epilepsy is one, should be managed in the community and in the home. What the motion asks for will go an immense way towards achieving that.

On another point, in the Health Committee we had a briefing last week from the Ambulance Service, during which it told us about the various appropriate care pathways (APCs). An ambulance is deployed to someone's home, wherever that may be, and, a lot of the time, they are able to go in, treat the patient and refer them on to an appropriate pathway that suits their needs. Unfortunately, it is my understanding that there are no specialist teams of nurses to cover all the trusts in Northern Ireland. We know that there are some, but they certainly are not across all the trusts. If we had more specialist nurses, we would see our Ambulance Service being able to refer all the people who do not need hospital admission, which is what we are looking towards. What we want to achieve is to reduce the number of people who turn up at our emergency departments.

I see the nurse specialist having a pivotal role in those care pathways in our Ambulance Service.

I know that Jo-Anne also talked about the lack of data and the provision of accurate information. As I said, that happens through the lack of recording. As someone who worked for the health service for a number of years, I know about recording. Sometimes it is difficult to get that accuracy, especially in admissions to hospital and treatments in hospital. People can come in with ailments that are sometimes registered as a certain ailment, not the underlying cause. That also happens.

Mr Robinson, in his opening statement, highlighted a need for a more positive future for people living with epilepsy and for ensuring value for money in the health service. That is something that all of us want to see and achieve. <BR/>I turn my attention to some of the comments made in the debate. Mr Robinson brought up an answer from the Minister in which she said there had been no plans: I am delighted to hear that the Minister is stating now that she will ask her Department to look at this again. I think we all welcome that today. Even as I read through our packs and saw a lot of the questions to other Health Ministers over recent years, I noticed that a lot of the answers were very scant because the information was not available yet again. So it was good to hear that from the Minister.

Mr Ian Milne highlighted the fact that this concerns not just those born with epilepsy; we have a very high incidence of people who develop epilepsy, whether through stroke or brain injury. We need to remember that and remember that it affects not just children. There are many adults who have lived what we would like to describe as a relatively normal daily routine whose lives are affected by this. Mr Milne also highlighted how the information could help with the reduction of hospital admissions, and he said that the database was not without merit.

I have referred to some of the things Mrs Dobson said, and she was absolutely right when she said that services were continuing to struggle. We know that that is across the board, but this is what we are discussing today. She talked about self-care and how those around the sufferer of epilepsy are the ones who know best. They are the most stressed and are constantly having to look out for the signs and symptoms. Those people, as carers, need our support as well, and that is something we would hope to look at.

Mr Durkan said that, after reading the pack, he saw just how common this is, and he is absolutely right. He talked about the last debate we had in the Chamber, back in 2013, if I remember rightly. Mr Robinson and I brought that debate too. It was looking at, again if I can remember, children and young people and reducing the stigma of epilepsy. Other Members mentioned that we needed to reduce the stigma.

Ms Bradshaw talked about long-term conditions. She is absolutely right: this is yet another long-term condition that goes unnoticed. There are so many. We know about the big long-term conditions, like heart disease and diabetes. Those are the ones that are talked about often, but some of the other, lesser-known ones are talked about less. I will take issue with something she said about the Health Committee not working together. I do not think that is the case; it is rather naive. I think we work very well together, and we do not need the Bengoa report to work well together, albeit that I would love to have it in front of us. I suspect Members think that the Bengoa report will be some panacea: I do not know that it is. We will know when we get it, but it certainly will not stop me working hard towards a better service.

I am slowly running out of time, and I cannot read my writing, Madam Principal Deputy Speaker. I will move on to Mr Middleton. He talked about life restrictions and a lack of support and education in the workplace. He also talked about the impact on the wider health service and said that, if we had the right support targeted in the right areas, that would bring about major savings.

Mr Sheehan talked about a reduction in waiting lists and how what we are asking for could go some way towards looking at that. He also asked the Minister to bring forward an accurate database. Mr Butler talked about misdiagnosis, as was mentioned earlier, and the high rate of that. He said that the system does not best signpost people as to where they should go. I thank Mr Mullan for his input, for being a part of the all-party group, for going forward with that and for sharing with us the story of someone he knows and how that affects her daily life.

In closing, I thank the Minister for what has been a very positive debate. When it comes to health generally, all of us in the Chamber want what is best for the people whom we represent. I thank her for her comments and her commitment to trying to make a difference.

Finally, I want to go back to something that Mr Robinson said. He reminded us earlier of the 35 people who died in Northern Ireland in 2014 because of epilepsy. I have a neighbour who just last year lost her son to a seizure, and I know full well how that affected her family's life greatly. If we can go some way towards helping those people who are suffering from this dreadful condition, I welcome the debate today.

Question put and agreed to. Resolved:

That this Assembly commends the work of the Assembly all-party group on epilepsy and the Northern Ireland advisory council of Epilepsy Action; and calls on the Minister of Health to establish a patient-led approach to epilepsy service provision, with particular emphasis on the protection and extension of epilepsy nurse specialists, and the creation of a database that will enable service provision to be directed towards the most used service areas for the benefit of the 20,000 people in Northern Ireland who live with epilepsy and their families, and to ensure the best use of resources.

Photo of Gerry Kelly Gerry Kelly Sinn Féin 4:30 pm, 3rd October 2016

On a point of order, a Phríomh-LeasCheann Comhairle. It is not actually a point of order. I would like to apologise for not being in my place for questions to the Agriculture Minister.

Photo of Caitriona Ruane Caitriona Ruane Deputy Speaker

I thank the Member for that point of order.

Photo of George Robinson George Robinson DUP

I apologise to you and the House, Madam Principal Deputy Speaker, for not being able to complete my contribution on epilepsy due to a throat problem.

Photo of Caitriona Ruane Caitriona Ruane Deputy Speaker

The contribution that you made was a very valuable one, and we thank you for that.

Adjourned at 4.37 pm.