 We have a calm and sensible debate. The next side of the business is a member's business debate on motion 4137, in the name of Ash Denham, on Eurofenynd Fiamtou ведigio undef expected. The debate will be concluded without any questions being put. I ask the members who wish to speak in the debate to press the request and speak buttons now. I know we've got a large gallery. I'm delighted to see you, but can I just say in advance applause from the gallery? No matter how much you want to do, it's not permitted. So please desist. I call on Ash Denham to open the debate, please. I'd also like to extend a thanks to all the MSPs who have joined me today in recognising World Neurofibromatosis, or NF, Awareness Day. I want to begin by paying tribute to Beth Beattie, who, on 4 November last year, sadly passed away at just four years old. I'd like to draw the chamber's attention to the fact that Beth's parents, Roger and Eva, are here today in the gallery, and so are representatives from the Neuro Foundation and from the Scottish Children's Charity Funny Lumps. What we say today, we say in honour of Beth, and it's my hope that by shedding light on this genetic condition, each of us can help to raise awareness, ensure that diagnoses are made early and direct people to resources for what can be a devastating disease. It's my hope that by remembering Beth and how hard she fought, we will help to set a better path forward for the nearly 30,000 people that are affected by NF in the UK. Many of us here will have heard of Huntington disease, cystic fibrosis or muscular dystryfi, but not heard of NF. Yet 2.5 million people worldwide are impacted by NF, making it more prevalent than those conditions combined. Too many still remain unaware of what NF is and what it entails. To put it simply, NF is a gene mutation that can spontaneously develop or be inherited. It causes tumours to grow in the nerve tissue throughout the body and comes in three forms. NF1 is a mutation on chromosome 17. NF2 is a mutation on chromosome 22. There is also a very rare condition called schwano-metosis, and I apologise if I haven't pronounced that correctly. The conditions allow for uncontrollable cell growth, and people of any age can suffer from NF with complications developing at any stage of life. To bring awareness to the disease today, I feel that it is important to point out what the signs of NF are so that individuals and medical professionals alike can be vigilant in recognising it. Signs for NF1 are apparent at birth or shortly afterwards, and they include six or more flat, light brown spots on the skin, often called cafe au lais spots, clustered freckles in skin folds, tiny bumps on the iris of the eye, and soft bumps on or under the skin, and or bone deformities. NF2 is much less common, and signs include gradual hearing loss, ringing in the ears, poor balance and headaches. The severity of NF varies for each person, but for many the struggle is physical, mental and emotional. Take, for example, a young boy or girl with NF who faces challenges in school. For the majority of children with this disease, reading, writing, maths or even just staying focused in the classroom can be difficult. They might have trouble processing information and then communicating what they have learned. For those kids, putting things in order and making sense of words can be extremely difficult, and when called on to answer a specific question, they might freeze up, and similar tendencies can occur for adults with NF in the workplace. Getting through a class or getting through the workday with NF is hard in and of itself, but that difficulty is increased tenfold if a child's teachers or their classmates or workplace supervisors are not familiar with the disease. When misunderstood, children with NF can feel confused, anxious, frustrated and then their performance in the classroom may suffer. As such, it is important for teachers to be aware that, as many as 66 per cent of children with NF will have some form of learning problem and one in four will display autistic tendencies. NF also comes with numerous physical complications, many of which are skin lumps and disfiguring tumours can grow all over the body, including on the optical nerves, which can impact sight, as well as curvature of the spine. Scoliosis, epilepsy, malformation of long bones, brain and spine tumours are all possible. Women have a fourfold higher risk of breast cancer and there are also higher instances of brain cancer for children that are affected. Those physical ailments are compounded by feelings often of embarrassment or insecurity due to the visible lumps and bumps on the body. As of yet, there is no cure for NF. That is why we should support organisations like the Neuro Foundation, a charity that works directly with families experiencing NF. It funds the Neuro Foundation specialist network, a small group of hospital-based professionals that provide care and guidance for those who are diagnosed with NF. I encourage anyone who is looking for a resource on NF to visit their website, which is nfauk.org. The charity Funny Lumps works specifically to support children with NF and their families. Family-centric support is especially important since NF is genetic. If someone or their partner has NF, there is a 50 per cent chance that their child will develop NF as well. Imagine being a parent and trying to explain your and your child's symptoms to those who know very little about NF while also facing the learning and communication barriers that I described earlier. That can make talking through education or healthcare options very difficult indeed. As Funny Lumps states, every child with NF is different, but we believe that each child should have a tailored prescription of information to assist the teachers in helping that child to achieve their full potential. Funny Lumps also holds events for families and children with NF to meet up, connect and talk about their experiences and support each other. You can learn more about them on their website, which is funnylumps.org. As Neuro Foundation and Funny Lumps are here today, I encourage anyone who wants any more information to join us in Q103 after the debate. Truly, one of the greatest challenges of NF is the uncertainty of the disease coupled with a lack of public awareness. I have seen that myself as one of my staff members who has an eight-year-old son with NF, and she has often had to deal with medical professionals who have never even heard of the condition. A constituent of mine also wrote to me, Shirley Stannars, and she told me about her son Thomas, who has NF. He has gone through three major surgeries, and a lack of full understanding from their GP has been a bit of a barrier, particularly for Thomas to get cleared to go back to work after he was medically discharged from his apprenticeship. Because of that unawareness, children and individuals with NF may not be properly diagnosed and children and families may not get the proper resources and support that they need. That is why today's debate highlighting world NF awareness day is so critical. Awareness is a core solution to effective support of those who have NF. If each of us simply listen, learn and pass on what we know, then this will help. I am very grateful to my fellow MSPs who will be speaking today and bringing this much-needed awareness to NF. I thank Ash Denham for lodging the motion and securing time on an issue that undoubtedly deserves the increased awareness offered by the debate. I also thank Ash Denham for explaining in detail exactly what NF is as a disease and how it manifests itself. It affects one two and a half thousand people, so more than two thousand here in Scotland. The neurofibromatosis is an unpredictable and variable condition caused by genetic mutation in one gene. As a progressive multi-system condition, it impacts on many areas of a sufferer's life, not just health and in this respect over 60 per cent of patients with NF1 will have learning difficulties and may struggle at school, particularly as awareness of the illness is comparatively low. NF is one of the most common genetic disorders, but it remains relatively unknown even amongst the medical profession that sufferers often have to explain their condition to GPs. Due to the lack of awareness, there is concern that those affected may not receive the correct treatment as quickly as they ought to. That is true of four-year-old Beth Beattie, who Ash Denham touched on and who sadly passed away on 4 November 2016 due to brain tumours caused by the condition. I know that Beth's friends and family, including her parents, Roger Neva, are present here today, as Ash Denham commented. I would like to offer my sincere condolences and will do my utmost to do your daughter's story justice. In the first 10 months of her life, doctors failed to diagnose Beth with NF1 four times as due to its unpredictability, there exists very little research into how severely the condition may present itself. In addition, in Beth's case, there was no family history of NF making this a spontaneous mutation. Understandably, her parents had never heard of the condition prior to their daughter's eventual diagnosis at 10 months old. Like Beth, about half of the people who suffer from NF have no family history of the condition and it occurs out of the blue with no one else in the family being affected, increasing the likelihood for it not to be diagnosed. Despite her condition, Beth's six-month visits to her pediatrician remain relatively positive. However, after her trip to A&E in November 2015, an MRI scan previously deemed unnecessary due to lack of physical symptoms revealed two large brain tumours. To quote Beth's parents directly, devastated doesn't cover it, heartbroken doesn't touch the physical pain you feel when you receive news like this. Indeed, I doubt there are any words which could accurately describe such feelings. Despite four operations, a routine MRI later revealed that the tumours were growing with doctors giving Beth just weeks to live. After a long and brave battle, Beth passed away at home seven months later. She was only four years old. As her parents rightly expressed, this should not be, yet in many cases this is a harsh reality of NF. When discussing conditions such as this, it is all too easy to focus on facts and figures, it is important that we remember that behind each of those figures is a face, a personal account of someone suffering from NF and the support system of family and friends also feeling the effects of this unpredictable condition. Therefore, raising awareness is of the utmost importance for fostering hope in the NF community, not only for sufferers but also to their families and carers who provide support. Doing just that is a group of dedicated volunteers who have been fundraising in Beth Beatty's name, calling themselves Team Beth. They keep her spirit alive in one of the best ways possible by helping others. Earlier this year, I was delighted to present a cheque along with Team Beth for £13,300 to Memories Are Better Than Dreams, a charity aiming to fulfil end-of-life wishes for children and their families in Ayrshire and supporting them through the loss of a child. Team Beth is continuing their fundraising efforts with a current total on their MyDonate page, reaching more than £16,500 and counting. Whether there is yet no known queue for NF, as people are born with it due to without a genetic mutation, this does not mean that nothing can be done to aid those who suffer from it. Before her eventual diagnosis, Beth was seen by numerous medical professionals who failed to identify it. I hope that this debate promotes increased awareness amongst medical professionals, and the public alike. The best story of a repeatedly missed NF1 diagnosis is all too common. However, awareness alone is not enough to save a life. We must also call for regular MRI scans to be offered to those living with NF, as that is the only thing that can potentially provide Beth with a greater chance of survival. In addition, access to specialist centres dealing with NF are increasingly difficult to obtain. Although charities such as the Neuro Foundation seek to extend an NS support network, it is not yet UK-wide. Consecantly, it urds it to honour the memory of the incredibly determined Beth Beattie and many others who like her who struggled or continue to struggle with NF. Patients should receive regular routine monitoring by specialist. We cannot afford to overlook the condition and the devastating impacts that it can have. I thank Ash Denham for raising this particular subject. It is a condition that, as our motion states, very few people actually know about. I, myself, fall into that category or did before this debate. For instance, I have learnt that it is estimated that around 1 in 3,000 people are currently diagnosed with the NF1 variant of the condition, yet many people remain undyled. That number may be greater. I learned about the NF2 variant being less prevalent and the rarest variant of all, schwannomatosis, which affects around 1 in 40,000 people. I also discovered that the Neuro Foundation estimates that around 2.5 million people worldwide have a form of NF, which is clearly a significant number. However, as other speakers have already said, lack of knowledge of the condition is an issue for medical professionals too. As the motion acknowledges, it is often the case that people who suffer from a form of NF or have children who have it often find themselves having to explain the condition to their GP. In that respect, I do not wish to criticise GPs given the important and difficult job that they do, but it must be important for our medical professionals to be aware of such conditions, particularly the early signs or symptoms, in order to provide swifter treatment and to improve the quality of life of the patient. That is why a debate like that is so critical and is one in which this Parliament can act for the greater good of the country by discussing a condition such as NF in this chamber and, hopefully, in the media. We can raise its profile both amongst the public but also within the medical professions, within government and health policy organisations. One of the most important aspects of this debate is that by highlighting the condition in its varying forms, we can urge health boards to ensure that all medical professionals are aware of the symptoms of the condition. Nash Denham gave some of those details in her contribution. It is also fundamentally important to raise awareness of the different organisations that offer support and advice to people with the condition and their families. I, too, would like to pay tribute to the Neuro Foundation, who, as they say, enable people concerned about NF to find solutions appropriate to them and, importantly, facilitate research. In particular, their new friend's wall is a superb tool for people who live with the condition and their relatives and friends to share experiences and meet others with NF. Looking closer to home, I, too, would like to pay tribute to the Scottish charity Funny Lumps, who support children with NF and their families. Their engaging approach to this condition is particularly remarkable, given that they offer home visits to support families and school visits to support teachers who have a child in the classroom who suffers from some of the various side effects of the condition. They also host family events, which allow children with the same condition to meet each other. It is fundamentally important for children with such a condition, because it is not only a social opportunity, but it lets a child know that they are not alone or unique in this situation. Deputy Presiding Officer, one aspect of this motion that I have not touched on but would like to close with is to mention Beth Beattie. This brave young child from Aire was one of those children who lived with the form of NF, and I was very sad and to hear that she passed away last November, and I add my condolences to those who have already been offered it. However, it is testament to her short life that over £13,000 was raised for charity by her family and many volunteers. I would also like to acknowledge the work of Kenny Gibson for his role in promoting this. Her memory should not be forgotten. In fact, it should prompt us and remind us that there are hundreds of people in Scotland living with the form of NF, and many others who remain undiagnosed. The challenge is to raise awareness, and I hope that this debate today will help to achieve that. I echo the comments of others in congratulating and thanking Ash Denham both for tabling the motion about neurofibromatosis awareness day, but also for securing this debate on awareness day. I was reflecting on Ash Denham's opening comments and Kenny Gibson's very moving reflections at the weekend. Like many members, I was back in my constituency with my family. I spent part of that time at home planning a party for a few weeks time to celebrate the birthday of one of my two daughters, Hannah. She has decided that she wants to have her birthday party at Dramur farm ice cream, exactly what the attraction of a farm that produces hundreds of different types of ice cream is. I do not really know that, but on the day of her birthday, Hannah is going to be four years old. The same age as little Beth was when she passed away in November last year. I cannot begin to imagine how utterly devastating and heart-breaking that must have been for Beth's parents and to lose your little girl at such a young age is something that is simply unimaginable. I would like to add my condolences to those of others today. When you listen to Kenny Gibson's comments and read the local newspapers in Ayrshire, I suspect that, through that heartbreak and devastation, there must also be an awful lot of pride for Beth's parents when they see the amazing fundraising that Beth inspired. Such fundraising is not only raising badly-needed funds for good causes, it is also raising awareness of NF, which is incredibly important. Personally until recently, I was largely unaware of NF. Prior to being elected to Parliament, I worked for a charity called Parkinson's UK and I had come across various reports asking whether there were links between different neurological conditions, including NF and Parkinson's. But until this week, I was completely unaware that NF is one of the world's most common neurogenetic conditions, with NF1 affecting one in every 25,000 people worldwide, including around 2,500 in the UK. NF2, although much less common, still affecting one in every 30,000 people worldwide, with more than 1,000 people affected in the UK. I also was not aware of the way in which NF1 can manifest itself in so many different ways with tumours that grow in the nerves inside the body and on the skin, often leading to severe disability, pain, itching, cancers, epilepsy, high blood pressure, bone abnormality, speech and language problems, dyspraxia, learning and behavioural difficulties, as well as various mental health issues. The problem with lack of awareness is that it leads to a lack of understanding not just from the public but also from health, education and public service professionals, the very people who we need to know how to respond to those with the condition requiring help and support. That can mean that, as Ash Denham's motion highlights, people go on undiagnosed until many of the disadvantages of the condition have already become entrenched. If people are not diagnosed until after they become parents, they may have unwittingly passed the condition on. I hope that, when we reply to today's debate, the minister will be able to inform members just how the Government thinks that it can possibly raise awareness of NF among our healthcare professionals. I also hope that the minister outlined the Government's thoughts on one of the suggested solutions to the problems of diagnosis, namely the use of the personal child health record that the so-called redbook, which, as members will know, is the national standard health and development record given to parents at a child's birth. Parents retain the redbook and health professionals update the record each time the child is seen in a healthcare setting. Adding checks relating to birthmarks to the content of the record and providing appropriate awareness to healthcare professionals, would I am sure, when it came to diagnosis, diagnosis and NF become something that maybe becomes a bit more accurate at an earlier age? I hope that the minister will learn her support to that. I hope that she will also respond to the calls that were made by Kenny Gibson and others for a so-called centre of excellence in Scotland. Although there are two fantastic specialist centres in England, Manchester and Gysin St Thomas', there are none in Scotland and, understandably, there have been calls for a specialist NF clinic to be established here in Edinburgh. In concluding, although many others have used my short contribution to highlight the issue of lack of awareness, I want to end by paying tribute to those doctors, nurses and other clinicians in their NHS who play such a critical role in providing help to patients who are affected by the condition. I will also pay tribute to the work of the organisation that is mentioned by Ash Denham, namely Neuro Foundation and Funnylumps, two small charities who are clearly punching above their weight when it comes to championing the cause of people with NF. I also want to pay tribute to the families and carers of those with NF who are so truly dedicated to supporting their loved ones. Most important, I want to pay tribute to all those who have lived with this condition and bear that condition with such bravery. As a result of today's debate, I am sure that we are all that bit better aware of their cause. I have no doubt today that there is pretty much nothing that I can say in this chamber that will ease the pain of losing a child. Often, parliaments get caught up in the sheer politics of it all. I think that today is a good example of that, but we really are brought back down to earth by the realities of a real-life story that crosses our path. In one of the most difficult surgeries that I have held in my one year as an MSP, I sat and heard the best story through the words of her mum Eva. I am certainly here today primarily because of Beth. A lack of knowledge of this condition contributed to the 10 months that it took for Beth to receive a full and proper diagnosis. Opportunities missed and time lost. May I share the condolences shared by Kenny Gibson today to the family, but I do so in the hope that out of this tragedy comes some positive actions. We are here today to debate and raise awareness of this disease so that those watching in the gallery or at home know that we are taking this seriously. We will all be aware of the complications that newer conditions can bring, and, as with any condition, the quicker the diagnosis, the better the chance the patient has of receiving the correct treatment. The problem is that the symptoms of NF are not always obvious, and that can be a real challenge for doctors and nurses who might diagnose those symptoms for something else. However, today is not about laying blame in any way, it is about raising awareness. I am very thankful to Ash Denham for bringing this motion forward. Her motion highlights that parents often find themselves in the position of telling their GPs what the condition is despite this being the world's most common neurogenetic condition, as Colin Smyth pointed out. Neurogenetic conditions typically require very specialist medical training, but with a more common condition such as NF, it is necessary to look at how we can better educate medical practitioners on the simple, everyday signs to look out for. After all, they are the front line in diagnosis. I would like to reiterate three simple observations from the debate today. The first is why NF is not included in the so-called red book or the personal child health record, which is used to keep a record of a child's health details such as growth patterns, reviews and immunisations. Having something as simple as listing the possible causes of those symptoms in the red book could go a long way into reaching a diagnosis sooner rather than later. It is worth pointing out that there are two specific NF centres in England—one in Manchester and one in London. There is no dedicated centre in Scotland. The charity Funnylumps has suggested that, rather than children under 16 being seen by medics who may have little or no knowledge of the condition, a Scotland-wide NF clinic might make more sense. I think that that is food for thought. My third point today is about research, which is another point that I would quickly like to touch on before I close. Many millions are spent on the research of other more well-known diseases, but so much more can be done on NF. Organisations such as the Neuro Foundation are there to support and promote medical research, but they are just the tip of the iceberg. What additional focus could we put on research? Unfortunately for Beth, her condition was discovered light, and her story is one of the most severe that the NF community has encountered, but there are many others in Scotland and across the UK whose lives to whom we can make a difference. Many of them do not even know they have NF, and many of them may not even be born yet. Once again, I would like to thank Ash Denham for bringing the debate forward. I would also like to thank her parliamentary aide Abigail Lawson who has worked tirelessly to co-ordinate the debate, provide us briefings and get enough cross-party support to allow us to have this discussion today. I wish team Beth the very best in their fundraising efforts. I may be persuaded to walk over hot coals and their forthcoming fundraiser. I will do it if Kenny Gibson does it. I am sure that I will find an excuse between now and then not to, but I hope that the Scottish Government will reflect on many of the comments made in the chamber this evening and, out of that, formulate some action plans to come out so that we can raise awareness further of this important issue. I have to see neither you nor Mr Gibson come back out now with many witnesses to your promising to do it, and it is also on the official report. I look forward to the video. I now call Aileen Campbell, minister, to close with the Government seven minutes of their abounds please. I, too, like other members, am very happy to take part in this debate and to close with the Government. Before I start, I would also like other members to offer my condolences to the family of Beth Beattie, clearly a very brave little girl who had a very difficult fight in her two short life. I would also like to commend her parents Roger and Eva for their tireless fundrais and work for memories are better than dreams—a charity that helps families to make special memories with their children towards the end of their life. As a mother to wee boys, I cannot imagine the pain of seeing your wee one go through so much. I put on record how inspiring Roger and Eva are and how brave and courageous they are in sharing their experience of what they have gone through. In honour of wee Beth, we must resolve as a Parliament to see where we can make improvements. Again, Kenny Gibson is right when he states that figures and statistics belie the fact that behind every figure and behind every statistics are people and people's suffering, people's pain, people's experiences and the grief that we need to do something to make things better and to make the improvements where we can. Again, I would also like to commend Ash Denham for bringing this debate forward, especially because today is neurofibromotosis awareness day. I am incredibly encouraged to see so many people shown their support right across the Parliament and this Government continues to be supportive of the charities that do so much important work to raise awareness of this rare disease. Funny lumps and others have been mentioned this evening and their innovative work is greatly appreciated by the Scottish Government. Ash Denham is absolutely right to raise awareness of the condition and not just what the impact is but to articulate and outline the impact of it emotionally and mentally, whether that is a young child struggling at school or someone perhaps in their adolescence coping with how the condition makes them look. That is why we must ensure that the structures that we have in place kick in makes sure that family school is supported and that when we talk about our national approach to children's services, getting it right for every child, that is felt and is true for children that have NF. Furthermore, our health and social care delivery plan, which was published in December last year, sets out our aim for Scotland to provide high-quality services, which includes a focus on early intervention and supported self-management. Alongside that, our approach to personal care is outlined by the chief medical officer in her report on realising realistic medicine. We need to ensure again that the approaches that we take to ensure that people feel empowered and supported are true for those with NF that awareness is raised and that appropriate and timely intervention happens when it is most needed. The Scottish Government has also published the rare disease implementation plan. It is not rare to have a rare disease in response to the delivering the commitments to the UK rare disease strategy. That aims to improve diagnosis, access and co-ordinated service provision and to facilitate work with research communities. The more specifically in relation to NF, the NHS national services division NSD commissions access to specialist services through service agreements with NHS England. Accordingly, there is free access to specialist treatment for all residents of Scotland with complex NF1. However, not all people diagnosed with NF1 will require that highly specialised care. In Scotland, the genetic services make the diagnosis of NF, provide the person with information and make arrangements for follow-up and on-going management. The need for annual follow-up and what is required and who to contact with the queries is recorded in a letter to the GP as well as correspondence to the patient. We absolutely recognise that day to day, a young person living with neurofibromotosis will need support out with those highly specialised services. I understand that periodic genetic reviews are offered so any issues, including education issues, can be recognised and addressed. At every stage, clinicians in primary and secondary care are also made aware that if they or the person has any concerns, they can request a genetic review. Again, awareness raising of the condition is so important so that our medical professionals, particularly those general practitioners and others that have that general knowledge of our own healthcare, have a heightened awareness of NF. We also recognise that, taking cognisance of everybody's views and contributions this evening, that awareness raising needs to be felt more keenly and will look and see where improvement can be made. In relation to NF2, genetic testing for Scottish patients is available from Sheffield Genetic Diagnostic Service. NSD has an agreement with NHS England that enables clinicians and patients access to the specialist NF2 service, and that clinic can advise on disease management and treatment options. Moreover, and additionally, the NHS Greater Glasgow and Clyde hosts a specialist NF2 clinic. The clinical team is interested in providing a nationally designated service for Scotland, and the feasibility of that is currently being considered by NSD with the help of the managed service network for neurosurgery. The hope is to form a patient pathway to improve access to that specialist support and co-ordination of care for this group of patients. Again, we will make sure that NSD has a close understanding of the interests that members have taken on this topic and make sure that their contributions made this evening feed into their considerations. Research was another issue that was raised by members, and research into rare diseases is absolutely vital. It is through that research that we will learn more about rare diseases, how they occur, how to diagnose them and how to treat them effectively and correctly. Again, that helps with the general awareness that our medical professionals require. It is also through research that we learn people's views on how they want to manage their disease and where they want to do that. The cabinet secretary announced on rare disease day that the launch of the rare diseases genomics study by the Scottish Genomes Partnership in collaboration with Genomics England. That study will see over 300 people with rare, genetic or difficult to diagnose diseases and their close family members offered the opportunity to have their entire genetic code sequenced. That will help people to receive a quicker diagnosis. That study, along with other on-going work, is a significant milestone towards achieving that. That important work is the key to ensuring that we deliver the best possible care and support for people with rare diseases, including NF. Furthermore, the European Commission is required to support member states in the development of European reference networks, or ERNs. The purpose of ERNs is to provide better access for patients to highly specialise care and to improve and pool knowledge for clinicians, which will aid diagnosis and care in an area where expertise is rare. That type of collaboration will enhance adoption of innovations in medical service. Health technologies enable knowledge to be shared not just across the United Kingdom but across Europe as a whole, helping with conditions such as NF and enhancing our knowledge of how the condition manifests itself and the ways in which we need to respond to that knowledge. The EU has approved 24 ERNs that cover areas such as rare bone disorders, pediatric cancers and genetically inherited conditions. Seven hospitals in Scotland and 102 hospitals in the rest of the UK will be directly participating in those networks. In response to the calls for more routine MRI scans, again, we can take that up and follow on to the members more specifically. Our understanding is that that type of condition because it can manifest itself in different ways and therefore has different investigations or treatment options may be appropriate for different patients, the undertaking of an MRI scan is a decision for the clinicians involved based on the needs of that patient. Again, we will take on board the points that were made. It is that clinical decision making that is so important. Again, we need to make sure that the understanding and knowledge of that condition is much more visible and keenly felt so that we can get the right support at the right time. To conclude, Beth Story and Herb Bravery has inspired so much money to be raised. The great joy that she brought in her four short years is the inspiration that I think we will use tonight to ensure greater awareness and greater understanding of that condition. We will continue to explore ways in which we can make the difference that I am sure that Beth parents want us to and which honours Beth memory as well. Again, thank you to Ash Denham for raising this debate in the Parliament to the members who contributed and again to the support that is clearly felt across in the public gallery as well. We will continue to work with everyone to make the difference that I think we all want. Thank you very much. That concludes the debate, and I close this session of Parliament.