Epilepsy
The final item of business is a members' business debate on motion S3M-1567, in the name of Hugh O'Donnell, on a call for better epilepsy care. The debate will be concluded without any question being put.
Motion debated,
That the Parliament welcomes the forthcoming More specialist nurses, better epilepsy care campaign being run by Epilepsy Scotland for National Epilepsy Week 2008; commends the outstanding support that Epilepsy Scotland gives to the estimated 40,000 people in Scotland with this condition; acknowledges the valuable contribution specialist epilepsy nurses make to patient-centred treatment and epilepsy management; recognises the cost savings that these nurse posts make by reducing hospital stays, decreasing consultants' workload and uncovering misdiagnosis and overtreatment; encourages NHS Scotland to address the shortfall in posts which means access to an epilepsy specialist nurse is a postcode lottery; notes that five NHS boards are without either paediatric, adult or learning disability nurses; believes that funding should be provided for additional epilepsy specialist nurses; advises that the recommendation of the Joint Epilepsy Council of the UK and Ireland for one specialist nurse for adult, paediatric and learning disability, per 100,000 of the population be followed in Scotland; acknowledges that resources for medical and administrative support must be available for specialist nurses to allow them to work effectively; suggests that increased specialist nurse provision will contribute towards related HEAT targets for an improved healthcare experience and rates of attendance at accident and emergency departments, and believes that the requests in this motion relate directly to plans contained in the Scottish Government's Better Health, Better Care strategy for a healthier Scotland, launched on 12 December 2007.
It is a real honour to open this debate—the first members' business debate that I have secured—on an important subject. I congratulate Epilepsy Scotland and the Joint Epilepsy Council on the success that they have had since the inception of the Scottish Parliament in raising the profile of epilepsy in Scotland. I must also make special mention of the sterling work that Allana Parker of Epilepsy Scotland has done in engaging with Parliament, the cross-party group in the Scottish Parliament on epilepsy and the previous and current Governments. It is gratifying that so many members are present for the debate, and I thank them for their attendance.
As many of us know, epilepsy is the most common neurological condition in the world. The fact that it affects about one in 130 people means that as many as 40,000 people in Scotland might have it. Approximately one third of that group will also have an associated learning disability. As someone who has worked with adults who have epilepsy, I know first-hand the impact that the condition can have on a person's lifestyle, and the social stigma that regrettably still comes with it.
Support for people in Scotland who have epilepsy has improved considerably, especially with the development of managed clinical networks, which were set up in response to the acute services review that was carried out in 1998. In "Our National Health: A plan for action, a plan for change", it was recognised that MCNs had the potential to improve services for people who suffer from all chronic conditions. Currently in Scotland there are three managed clinical networks for epilepsy—in the north, in the west and in Tayside—and there is a national paediatric managed clinical network for children with epilepsy. I would like more MCNs to be developed. Despite progress, including on the Scottish intercollegiate guidelines network guidelines, much remains to be done to improve clinical and social support for people with epilepsy and, not least, to improve access to specialist nursing support and care.
Epilepsy specialist nurses are senior qualified nurses who have five years post-qualification experience—the ideal is that that experience is in neurology or epilepsy. ESNs attend consultant-led review clinics and first-seizure clinics, where they provide necessary and thorough support to newly diagnosed adults and children. They also run nurse-led clinics, which enable people across the social spectrum to access specialist help without having to wait for clinical appointments. ESNs assist with transition clinics, which are important in providing help to young people with epilepsy as they move into adult services.
ESNs provide one-to-one support on many issues, including pre-conception planning and pregnancy, drug management, pre and post-surgery care, employment and even social activities such as driving. They provide education to social work and health professionals who work with people with epilepsy, for example by training general practitioners and practice nurses. Their work helps to disseminate knowledge and understanding and ultimately helps to improve the support that is available for people with epilepsy as they come into contact with primary care services.
ESNs ensure that the quality of care that people with epilepsy receive is high and meets the national standards. They have improved the standard of care beyond all recognition. The provision of specialist nurses and nurse-led clinics reduces consultants' workloads, which perhaps in turn reduces overall waiting times and waiting lists. The SIGN guidelines report that ESNs are
"cost effective … reduce the length of stay in hospital … and increase patient satisfaction."
Given the proven success of ESNs, it is extremely worrying that, despite the guidelines and the establishment of MCNs in 1998, five health boards in Scotland still have no adult learning disability or paediatric epilepsy nurses, which means not only that the service for people with epilepsy is reduced to a postcode lottery, but that there can be misdiagnosis, unnecessary hospital admissions and longer waiting times for many patients.
The Government's commitment to a healthier Scotland, which it made clear in the 2007 document, "Better Health, Better Care: Action Plan", sits comfortably with the need for it to provide the necessary resources to enable every health board in Scotland to provide the support and care throughout Scotland that people with epilepsy are entitled to expect. I hope that when she sums up the debate the Minister for Public Health will talk about resources and confirm the Government's determination to advance service provision in Scotland, thereby improving services for people with epilepsy throughout the country.
I congratulate Hugh O'Donnell, Epilepsy Scotland and the cross-party group on epilepsy on securing the debate. I hope that the debate will raise awareness about a common condition and help to broaden and deepen the political consensus that specialist epilepsy nurses have a greater role to play in the future.
I read that one in 129 Scots has epilepsy, so I declare an interest in the statistic: there are 129 members of the Scottish Parliament and I have epilepsy.
I have seen startling displays of lack of awareness of the nature of the condition. What most comes to mind in that context is the man from Alabama with whom I shared an office at the University of Aberdeen, and with whom I never quite managed to share the information that I had epilepsy after I caught sight of a tome on his bookshelf entitled, "Satan Cast Out, or the True Causes of Epilepsy." The greatest lack of awareness was my own—not only when I suddenly developed epilepsy at 18, but for a long time thereafter. I was pretty ignorant about my condition. However, I have been very fortunate in that my seizures have been gradually brought under control to the extent that I have been without symptoms for the past four years.
My knowledge of what was happening with my health was ropey and it was not helped by my attitude. It is fair to say that I was not the model patient. It took me a full year to find strategies that were equal to the task of overcoming my absent-mindedness to ensure that I always took my pills. If my mother is listening, I say to her that I now always do that. If she is not, I will say that when a doctor told me at 18 that drinking "might exacerbate my condition", I took the word "might" to undermine the strength of his argument, if not to discredit it completely.
I do not advise anyone else with epilepsy to conduct the same experiment that I conducted when, as a student, I was cycling home one day. Feeling the first symptoms of a seizure, I took the gamble that if only I pedalled fast enough I would have just enough time to get home before slipping completely into unconsciousness. Happily, my plan worked out fine, but I would not try it again.
More than anything, and with absolutely no disrespect to them, the doctors whom I consulted from time to time had very little idea of the medication I should take, or of how much, or when. That is not a criticism of those doctors; they were frank about the process being one of trial and error. I saw consultants infrequently and had brain scans that may have told the hospital something, but which told me nothing at all. Between those infrequent visits, I ignored my epilepsy, except on the four or five occasions a year when I was ill. Between those times, I offered the occasional suggestion to my GP on whether the dose should be put up or down. I had absolutely no rational basis for those suggestions, however. In the end, I took roughly the doses that I felt I should take, given that my medical notes and prescriptions never seemed to agree on the correct dosage.
I cannot help but think that if I had had even occasional contact with a specialist epilepsy nurse, I might have received practical information and probably the occasional—productive—telling off. When I was first diagnosed, an epilepsy nurse would have been a considerable reassurance to my parents. They would have ensured that a more systematic attempt was made to get the correct dosage.
The only real frustration—now, at last, it has been overcome—was not being able to drive, which is a significant problem in the Western Isles. After having gone the required year without a seizure, I started the lengthy process of learning to drive. I finally passed my driving test, thanks in no small part to a Lewis road being blocked by a funeral cortège for several minutes. Very irreverently, that struck me as the ideal opportunity to waste time in injury time.
Fortunate as my experience has been, there can be no underestimating the distress that epilepsy must cause a young child and those who have more regular seizures than I ever had. Though provision is very patchy, the key to better diagnosis, treatment and information lies in wider provision of specialist epilepsy nurses, on which I see an emerging political consensus.
I, too, congratulate Hugh O'Donnell on bringing the debate to the chamber and I thank him for lodging such a comprehensive motion. He has brought an important issue to Parliament.
I associate myself with Hugh O'Donnell's comments on Epilepsy Scotland, including on its work and the contribution that it continues to make. I hope that its partnership with Parliament will continue. As we have heard, it brings an appreciation of the experience of epilepsy, the significance of which is important to the development of policies that will address the challenge of epilepsy as services develop.
Like Alasdair Allan, I have personal experience of epilepsy and an interest to declare. Some years ago, my cousin died of an epileptic seizure when she was a young woman of 20—she was found dead one morning by her family. That experience was a wake-up call to me and my family. It served as a warning of the need to have a broad understanding of epilepsy. We must understand its impact and the services that we need to design around it. We cannot afford to be complacent about the importance of those services and we must not expect people with the condition to somehow manage to just get along.
As has been said, and as is said in the motion, 40,000 people in Scotland have been diagnosed with epilepsy. We need to ensure that they have access to proper resources and services. In his speech, Hugh O'Donnell spent some time highlighting the progress that has been made, which is significant. We need to acknowledge that. I do not doubt that the new Government wants to continue that progress.
It is important that we focus particularly on the role that specialist nurses play. Most people now argue that they are a key component in the development of services; medical evidence certainly supports that view. Alasdair Allan described how specialist nurses could have played a significant role for him. However, Epilepsy Scotland has estimated that only 36 per cent of children and 7 per cent of adults with epilepsy have access to specialist nurses. Of them, 9,000 adults and 1,000 children have to travel outside their postcode areas to access the nurses. It is incumbent on us to try to appreciate the experiences and the consequences for those who have epilepsy and who have to travel miles to access the care that they need, and those who do not get that access at all. As Hugh O'Donnell said, five NHS boards in Scotland have no specialist epilepsy nurses. I hope that the minister will address that issue in summing up.
A consensus is developing on the crucial role of specialist nurses. Throughout Scotland, we are beginning to appreciate their role in dealing with a range of long-term conditions. A few months ago, the Parkinson's Disease Society hosted an event in the Parliament, at which it gave significant evidence about the role of specialist nurses. We are beginning to understand the need for specialist nurses, but there is a problem with uneven distribution throughout Scotland—we need to deal with the postcode lottery. As people who experience such conditions would say, it is sometimes just down to luck whether they get a specialist nurse. It is important that we ask health boards to develop such provision.
We need to put on the record the contribution that specialist nurses make in helping people and their families to manage their condition. Specialist nurses also play a crucial role in the medical service by assisting GPs, practice nurses and professional carers. Their work is invaluable. The Parliament can now begin to address the issue.
I, too, thank Hugh O'Donnell for the opportunity to debate issues relating to epilepsy. I also thank Alasdair Allan for giving us his first-hand experience—it is always helpful to get that. I associate my party with Hugh O'Donnell's comments on the work of Epilepsy Scotland, particularly that of Allana Parker. Hugh O'Donnell highlighted specialist epilepsy nurses. I understand that there are 21 such nurses in Scotland. The situation is probably better than it has ever been, but there is a long way to go before we meet the recommendation from the Joint Epilepsy Council for 50 specialist epilepsy nurses.
Some years ago, I helped to set up a support group for people with epilepsy in the Highlands. Unfortunately, the group folded, but people with epilepsy are now coming forward and are determined to set up another group. When we started the group, a neurologist from Aberdeen visited Raigmore hospital two or three days a month, but there is now a permanent neurologist there. At that time, there was no specialist epilepsy nurse, but we now have one for children, mainly for those who also have a learning disability. Progress has been made, but there is still a long way to go.
When I was told that I was speaking in the debate—which I am delighted to do—I thought about where to start and what patients should expect. People come to my surgery and say that no services are available, so I thought to look at the SIGN guidelines to find out what patients should expect. I began by looking at SIGN guideline 81, on children with epilepsy. I noted that
"Children with epilepsy should have access to specialist epilepsy services, including dedicated young people and transition clinics".
I also found that
"Each child should have an individual management plan agreed with the family and primary care team"
and that an
"Annual review is suggested as a minimum, even for children with well controlled epilepsy".
Guideline 81 also states:
"All children with epilepsy should have their behavioural and academic progress reviewed on a regular basis",
and that
"Epilepsy awareness training and written information should be offered to schools."
That sounds good—I see that Mr O'Donnell is impressed.
Guideline 81 states a lot more, but I want to know who audits the guidelines. Who audits whether health boards choose to implement them partially or fully, or to ignore them and leave them to gather dust?
It is all very well stating that children should have access to specialist epilepsy services but do parents know that? Or general practitioners? How can politicians know whether the services are even barely adequate if the SIGN guidelines are not monitored? Perhaps the minister can answer that in her summing up. I would be interested to know which health boards have complied.
I moved on to SIGN guideline 70 on "Diagnosis and management of epilepsy in adults". I assume that diagnosis is done correctly, but I was looking more at the management of epilepsy. I noticed that SIGN 70 says:
"A structured management system for epilepsy should be established"
It goes on to say that
"an annual review is desirable"
and that the shared care management system should seek to carry out certain things. It also says that advice on contraception should be given.
Many of the epilepsy sufferers whom I know in Inverness got their diagnoses from GPs 30 years ago and have been getting repeat prescriptions ever since. They have never seen a neurologist, know nothing about SIGN guidelines and have had none of what is recommended in the guidelines. There is little in SIGN guideline 70 to highlight exactly what patients can expect. It is all very well saying what should be given, but that means nothing. What on-going reviews, monitoring of care, and new drugs and the opportunity to access them can a patient expect? Where is the clear guideline that would allow patients the opportunity to see what they should expect in the management of their condition?
I congratulate my colleague and friend Hugh O'Donnell on securing his first members' business debate, on a subject that is of immense importance to many people throughout Scotland. As Hugh O'Donnell and Margaret Curran said, epilepsy affects about 40,000 people in Scotland.
Epilepsy has been well documented through the ages, from as far back as 5000 BC, when epileptic auras, convulsions and all other aspects of the disease—called the falling disease then—were recorded with accurate descriptions. I think that it is still called the falling disease in Gaelic—Alasdair Allan is nodding.
Ancient people thought that epilepsy was caused by evil spirits invading a person's body. Priests attempted to cure people of epilepsy by trying to drive the demons out of them. Superstition was challenged by ancient physicians such as Hippocrates of Greece, who recognised a seizure as a dysfunction of the brain and not a supernatural event. Thankfully, we have moved on since then and that interpretation of epilepsy no longer exists, although those past attitudes have left a legacy of stigma and some damaging misconceptions. People with epilepsy continue to face fear, prejudice and discrimination in their everyday lives.
The condition is complex, which makes diagnosis and treatment difficult. As the motion says—and as we have heard—it is important to recognise the role played by Epilepsy Scotland in supporting patients, and to give special recognition to the work carried out by the specialist nurses and medical staff on the ground, and to Allana Parker, who drives the cross-party group on epilepsy, to which I and many other members belong. As we have heard, there are fewer specialist nurses than are needed. The inconsistent nature of specialist services throughout Scotland will leave many epilepsy sufferers at an obvious disadvantage. It is, as has been said, like a postcode lottery.
Specialist nurses are important because they are highly skilled and experienced in epilepsy or neurology. They provide essential support to newly diagnosed adults and children. There are nurse-led clinics that give people access to specialist help and advice without the need to wait for a consultant appointment. They assist with transition clinics, which inform and help young people who are moving from paediatric to adult services. They provide specialist support for pregnant women through dedicated pre-pregnancy and pregnancy clinics. They provide advice and support on drug management, pre-surgery, education, employment and—as Alasdair Allan mentioned—driving. They provide education to health professionals who work with people with epilepsy.
As the motion states, there are five health authorities in Scotland that are without any specialist epilepsy nurses. Of those five, two are in my region and that of the Deputy Presiding Officer—South of Scotland. NHS Dumfries and Galloway, where there may be about 1,200 epilepsy sufferers, has no specialist nurses. NHS Borders, which covers the area where Alasdair Allan was brought up, may have about 1,000 sufferers, but it too has no specialist nurses.
Also lagging behind in the region is NHS Ayrshire and Arran, which has only one adult specialist nurse and still needs to fill three posts. NHS Lanarkshire, which is also in the South of Scotland—it is a huge region, of course—has one paediatric specialist nurse and one learning disability specialist nurse but still needs to fill another four and a half posts. NHS Lothian has specialist nurses but still needs to fill another three and a half posts.
I echo what has been said about epilepsy specialist nurses being vital to providing comprehensive, high-quality care for patients. I fully support the motion and sincerely hope that the Scottish Government will put in place the funding that is necessary to address the need for more epilepsy specialist nurses.
I congratulate Hugh O'Donnell on securing the debate. As, with Alasdair Allan, I am a co-convener of the cross-party group on epilepsy, I am well aware of the interest that is taken in many issues to do with the condition.
At a recent meeting of the cross-party group, it was evident that epilepsy specialist nurses could benefit more people. We have heard estimates that put the number of people with epilepsy in Scotland at nearly 40,000, about a third of whom also have learning disabilities. There is clearly a great opportunity for specialist nurses to assist many people, particularly those who have learning disabilities.
Since the Parliament was established, much effort has been focused on how the national health service treats people with serious illnesses such as cancer, heart disease or stroke. Services have been reviewed and improved, and there has been investment and a corresponding reduction in waiting times for treatment. That is great, and no one would argue against that priority because those illnesses are life threatening, but we know that the number of people who live and cope with chronic diseases such as epilepsy, diabetes and asthma is large and increasing. We have a responsibility to improve the care and treatment of people with chronic illnesses. We need to acknowledge that we can do things that will improve their quality of life and to act on the information.
There is no doubt in my mind that epilepsy specialist nurses can help people. We have heard many examples this evening. The time after first diagnosis with epilepsy can be unsettling and worrying. A nurse specialist who can provide support and information can make it easier to come to terms with the diagnosis. For sufferers of a condition such as epilepsy—about which, as we have heard, there is a significant amount of misinformation and a certain amount of stigma—it is invaluable to have someone to offer such support.
As time goes on, a person with epilepsy may find that their medical needs or circumstances change, and it is helpful to have specialist support then, too. Epilepsy specialist nurses could provide a patient-centred focus to help a person manage their epilepsy. That would undoubtedly reduce the number of presentations at accident and emergency units. I have been through that, so I know how distressing it can be for the person with epilepsy and their family. Anything that reduces such events is to be encouraged.
I thank the nurses who spoke to the cross-party group about their experience and the benefits that they can offer. I also thank Epilepsy Scotland for the briefing it provided for the debate and, as there are a number of representatives of the charity in the gallery, I take this opportunity to congratulate them and Enlighten on their recent merger—yes, I have signed Hugh O'Donnell's motion.
All that remains is for the minister to follow the supportive speeches that she has heard and say how we can encourage health boards to respond to the SIGN guidelines and introduce epilepsy specialist nurses in all Scottish health boards so that each one of us can guide people to the services that we clearly think should be provided for our constituents.
I, too, congratulate Hugh O'Donnell on securing the debate, which is of immense importance to the large and increasing number of people in Scotland who suffer from epilepsy.
A friend, who is in her late 50s and lives south of the border, was diagnosed with epilepsy fairly recently. She has found it a frightening and frustrating experience. It has taken a considerable time to find the appropriate medication and she has had to change her lifestyle now that she is no longer able to drive her car. She is doing quite well now, but she had a miserable time until she got her initial difficulties sorted out. I do not know whether she was cared for by a specialist nurse—I suspect not—but the ready availability of expert information and the peace of mind that can be derived by discussing problems with someone of sound knowledge who has the understanding that comes from dealing with the condition day to day, without having to approach a GP or consultant, can make a significant difference for someone who is suddenly faced with an unexpected and chronic disability.
I am a great fan of specialist nurses—increasingly so since becoming an MSP. Many of the people with chronic conditions whom I have encountered put the availability of a specialist nurse high on their list of priorities, whether the condition is epilepsy, Parkinson's disease, multiple sclerosis, asthma, diabetes, chronic obstructive airways disease or coeliac disease—I could probably fill my four minutes with a list of conditions for which specialist nurses give invaluable help to patients. I am firmly convinced that the national health service, as well as its patients, would derive significant benefit from an increased number of specialist nurses.
We are addressing specialists in epilepsy and the postcode lottery of provision to patients with that condition, but the debate could be extended across the NHS. Improved provision would not only improve patient care and quality of life by helping patients to control their conditions at home or in their local communities, but save the service money in the long term by reducing the considerable costs of hospital admissions. It would also reduce GP and consultant time and release them to deal with the more problematic cases that cannot be dealt with straightforwardly or domestically.
I am in no doubt that nurse recruitment—and more particularly nurse retention—would be improved by the existence of more opportunities to specialise in conditions that are of particular interest to those health professionals. I have yet to meet a specialist nurse who does not glow with pride and satisfaction when they describe their work—which is often work that any of us here would find harrowing or daunting. The average specialist nurse puts his or her all into helping the patients with whom they deal on a daily basis. They also provide invaluable support and information to families, carers and less well-informed health professionals.
I fully support the motion, the detail of which has been ably dealt with by Hugh O'Donnell and other members, but I make the case for a general expansion of specialist nurse provision. It would involve careful workforce planning and significant initial investment, but I truly think that we would end up with many more satisfied and well-treated patients and contented staff who would not consider quitting their profession until they absolutely had to.
The Minister for Public Health has taken considerable interest in the provision of specialist nurses to improve the care of patients with conditions such as epilepsy. If she can leave a legacy of adequate specialist nursing care provision in Scotland, she will have done an extremely valuable job.
The debate is an important lead-in to next month's epilepsy awareness week. I congratulate Hugh O'Donnell, and not just because this is his first members' business debate—more important, he does us all a service by giving us this opportunity to discuss the topic of epilepsy nurse specialists, the importance of which is demonstrated by the number of members who have stayed for the debate. That is the focus of the motion, but I will also use my speech to deal with some of the general aspects of services for people with epilepsy that the motion covers.
As has been said, around 40,000 people in Scotland live with some form of epilepsy. In 2004-05, the cost of epilepsy to the NHS was in the region of £38 million a year, which was probably an underestimate. The goal of everyone with epilepsy is of course to be free of seizures, but, sadly, about three people in 10 continue to have seizures in spite of the medication that they get. The motion is right to draw attention to the fact that up to three people in every 10 are misdiagnosed.
The motion highlights the need for person-centred care that is delivered as locally as possible, with access to a specialist when necessary. In that respect, epilepsy is no different from any other long-term condition. However, given that epilepsy is such a complex condition, the greatest need is usually to get rapid access to a neurologist for a definitive diagnosis. The SIGN guideline says that people should not have to wait longer than two weeks for an appointment at a first seizure clinic.
The importance of ready access to specialist advice is one of the points that are made clearly in Audit Scotland's report on managing long-term conditions, which was published last August. Epilepsy was one of two conditions that Audit Scotland looked into in some detail. The report draws on the outcome of several focus groups involving people with epilepsy. That makes it a valuable source of advice on the sort of services that people with epilepsy are looking for. It refers to evidence that a lack of specialist knowledge of epilepsy in the community can lead to people not receiving the right treatment. Alasdair Allan's personal experience highlights that point well.
We need to ensure that services for people with epilepsy are integrated fully across primary care and care in hospital and that they are provided by a multidisciplinary team. That is the sort of issue that will be addressed in the work that NHS Quality Improvement Scotland is doing in developing clinical standards for neurological conditions. One part of those standards will be generic and will deal with issues around access to specialist neurological advice. The other part will deal with a number of specific conditions, of which epilepsy is one. The SIGN guidelines provide a strong evidence base on which to draw.
Mary Scanlon raised the issue of the SIGN guidelines. I assure her that once the standards have been developed, local services will be assessed against them. We will therefore have a tool with which to measure health boards' performance. On-going reviews are covered by the epilepsy element of the quality and outcomes framework of the general medical services contract. We should use that leverage to ensure that what we want to happen is happening.
The draft standards should be ready for consultation in the autumn and should be published next year. They offer us a good opportunity to consider the details of the multidisciplinary team that should be providing services. That includes the important role of the epilepsy specialist nurse. As the Audit Scotland report points out, epilepsy nurse specialists can help bridge the gap created by the limited number of consultant neurologists, especially those who specialise in epilepsy.
The motion sets out eloquently the range of benefits that epilepsy nurse specialists can bring, to which members throughout the chamber have referred. Above all, we know how much people with epilepsy value the support that they offer.
Work on the epilepsy standards is still at a comparatively early stage. I want to ensure that NHS QIS is aware of the terms of today's motion, that it takes forward the issues that members have raised and that it takes account of the comments on the role of epilepsy nurse specialists in particular.
Where services need to be integrated between primary and secondary care and delivered by a multidisciplinary team, the answer is often to think about developing a managed clinical network approach, as Hugh O'Donnell said. The Scottish Government and Epilepsy Scotland, to which I pay tribute, have been working on such an approach for some time. There has been considerable success, but I hope that the epilepsy standards will encourage the spread of managed clinical networks. I am thinking particularly of the boards in south-east Scotland, where we would like to see a revival of the epilepsy managed clinical network that used to exist there. Those networks also have an important role to play in designing services so that people meet the 18-week target for referral from general practitioner to an appointment with a specialist.
In our approach to the management of long-term conditions, a cardinal principle is that we should be dealing with the totality of people's needs. The Audit Scotland report makes the telling point that many people with epilepsy, especially as they get older, will be living with other, non-related conditions. In 2004-05, each patient who was admitted to hospital with epilepsy had nearly four other conditions. We must ensure that the services we provide are able to pick up and deal with those other conditions.
We know from Epilepsy Scotland that many people with epilepsy also have learning disabilities—as many as 24,000 people may be living with both. People with learning disabilities commonly experience lifelong severe and multiple seizures, in spite of taking several anti-convulsant drugs. They are the highest users of emergency hospital admissions, and they face significant health risks. We are very aware of that. We are also aware of the important role for nurses who specialise in the combination of epilepsy and learning disability in providing those integrated services for that group of people.
I hope that I have made it clear that the Scottish Government supports the terms of the motion and agrees that its aims are consistent with the approach in "Better Health, Better Care". I assure members that we will give priority to the policy when we produce a long-term conditions delivery plan later this year. We will set out in more detail how we will take that forward, and I will discuss with NHS QIS the relevant issues that have been raised this evening. There is an opportunity to ensure that those issues are reflected in the standards that will be published later in the year.
Meeting closed at 17:41.