 Good morning and welcome to the 11th meeting of the Health and Sport Committee for 2018. I'd like to welcome our witnesses to the committee. Can I ask everyone in the room to switch mobile phones off or to silent, while use of mobile devices for social media is welcome? I would also ask you not to photograph or record proceedings as we do that through our committee staff. Erdwcient o'r first item er mwynhau i seisio myfydliadau neurologigol i gydagol, ac yn gwybodaeth ffwrdd i gydagol o'r agenda. Felly, ymddangos i chi i gydagol i'r cymryd i gydagol, Pamela Mackenzie, y director ffôr neurologigol i gyllidau i Gwyrddysgol, ac i Gwyrddysgol i Gwyrddysgol i'r Gwyrddysgol i gydagol i Gwyrddysgol i Gwyrddysgol, Professor Malcolm McLeod, Professor of Neurology and Translational Neuroscience at the University of Edinburgh and Clinical Lead for Neurology at NHS 4th Valley, Dr John Paul Leitch, consultant neurologist representing the Association of British Neurologists and a council member and Mario Keefe, the chief executive officer of Loughy House. Welcome. I know you will all want to take part fully in the session. We have time for a range of questions. Members will have a range of questions for you and questions and answers through the chair. Of course, if you feel that you would like to chip in and provide additional answers to one that one of your colleagues has already addressed, then please feel free to do so. Where I would like to start is with the aim to produce a national action plan and also revise standards for the neurological health services in the course of this year. Perhaps the place to start our evidence session is with a question about the activities that are being undertaken towards the national action plan to ask whether those are the right activities aiming towards that in the development of a national action plan. Who would like to kick off on that subject? There is nobody who would not see that it is right to have a national action plan, however we have fairly recently in 2009, I think it was, we went through standards before and what was very disappointing for us was the lack of take-up of those standards before. So we would welcome very much having national standards, however there has to be a commitment that they will be taken forward. Yes, I would just like to say, you know, I would echo what Mary has just said in terms of, you know, reference to the 2009 clinical standards, plus this was a very good document. It wasn't mandatory and my understanding is that new standards are not mandatory either, so what we do need to follow that piece of work is some good inspection regime, which will be able to scrutinise shortfalls in services and make sure that there is clear action planning so that we don't end up with something that doesn't have priority as has happened with the 2009 standards. In relation to the action plan itself, I mean, this is fantastic news for us, it's what we've all been asking for and I think, you know, the pieces of work that are going on around that will really help. We hope that the National Advisory Committee for Neurological Conditions will be given the authority and also the resources to support the implementation of that action plan. Thank you very much. So I think there are probably two or three issues here. I was involved in trying to oversee the implementation of the previous audit standards and one of the difficulties is that there were quite so many of them. It operationalised out about 108 or 109 different audit standards and if you ask people to do everything, they'll not be able to focus on doing anything to any great extent. So I think the first thing is to have a core set of things which are priorities that we seek to get people to look for. The second thing is to make a distinction between audit for accountability and audit for improvement and I would hope that this is an exercise in audit for improvement. The third thing is this difficulty that we have that services for people with neurological conditions are immersed and interspersed in every part of what the health service does from primary care through to secondary care. If you come to neurology services asking us to look at this, we touch perhaps 5 or 10 per cent of that activity and our patients use services in primary care and elsewhere that are used by other patients who have disabilities that aren't neurological but are cardiac or oncological or whatever and it may be sensible to try and separate those out because there's enough kind of apartheid going on if we're interested in our neurology patients but less interested in cardiology or oncology patients. I would say that the first thing I want to say is we do not want to go around reinventing the wheel here. We've got a national advisory committee for neurological conditions. Unfortunately there's no representation here today but I've sat on some of those committee meetings. We should in an absolutely echo this call, we should empower and we should invigorate this committee and allow it to take the agenda further forward in all respects. We have to recognise the range of neurological conditions. It's not just people with severe disability requiring residential care. There's a massive percentage of our acute admissions to hospital of neurological conditions. Neurological conditions range from intermittent what we call paroxysmal disorders through to progressive degenerative disorders. In many ways neurological services in the last 15, 20 years in Scotland have blossomed. We've become victims in some ways of our own success. We're managing to deal with epilepsy, first seizures, MS, Parkinson's disease and specialist clinics in a way that we could not even dream of in the 1990s. All people with first seizures will now be seen at some point by a neurologist. That might feel like poverty when they have to wait three months but as opposed to 20 years ago when first seizure patients were seeing accident emergency doctors, psychiatrists, general physicians, we're in a better place. Yes, there's room for improvement. The best group to tell us how much further improvement we need will be the National Advisory Committee for Neurological Conditions. Re-invigorating and empowering them is going to be absolutely key to where we go in the next 10, 20 years for neurological conditions in Scotland. Thank you very much. Emma Harper and then Sandra White. Thank you, convener. Good morning, everybody. I'm interested in the development of new standards, supporting the development of standards that are up to date compared to the 2009 ones. I know that there are general standards for neurological care and support scoping report, which was published in March this year by Health Improvement Scotland. It's listing standards that have been developed for many neurological conditions, but you've just described, Professor Malcolm McLeod, that a lot of the core processes around neurological care are the same, so rather than reinventing the wheel, what would you say, as far as developing the core standards, that then could be separated different when we have to look at different neurological conditions like Parkinson's and epilepsy, which might have different needs than MND when you're doing non-invasive ventilation at night, for instance, at home? I think that we're talking largely about specialist nursing support, for instance. Some of the needs are generic and apply to all patients, and some are very specific to the disease in question, although, for instance, with motor neurone disease and non-invasive ventilation, that might also apply to patients with myocenia gravis and other neuromuscular conditions. I've been concerned for a number of years about what I call diagnostic apartheid, which is that if you come to my neurology service in Forth Valley and you've got one of five conditions you could access to a specialist nurse, and until very recently, if you didn't have a condition that was on that list, you had nothing. And so the growth in generic neurology specialist nurses, and we've got two in Post and Forth Valley just now, is, I think, very important. In terms of audit standards, there's process and outcome audit. And outcome audit is quite difficult, because the outcomes that we don't want to see are thankfully quite rare, and so if you measure a service against vile, pred, exposed pregnancies, for instance, those hopefully are going to be very rare events and perhaps not give you enough information to feedback for the improvement. Process audits are difficult, and actually the experience, both from the cancer tracking audits and for the Scottish stroke care audit, is that they require a bit of admin to work. So when I see a patient in the TIA clinic in Larbert, I fill in a form which then goes to an audit data controller who then puts it in and then it gets fed to ISD, and then that information comes back on a monthly basis to tell us how well we're doing. And if you want to do a similar thing for neurology, you're going to need audit workers in every neurology centre to capture that information. I could jump Paul's point, though, that the patients that we see in our clinics are actually a very small proportion of the patients who've got neurological conditions, and a focus just on neurology services to the exclusion of primary care is, I think, not going to meet where the bulk of the problems with services for neurological patients is. I think that in terms of the new standards that are being applied, they're quite different from the clinical standards in 2009. I think that there are some similarities, as it's been said there, but, however, this isn't encompassing the whole person. This isn't just about an acute hospital approach to things. This is about a pathway approach to people with a variety of neurological conditions and about living their life to the fullest and getting the best outcomes from a health perspective, from a wellbeing perspective, from a family perspective. So that's what we would hope to see as being driven through those standards, is that we're not just looking at that whole person, as opposed to just purely clinical outcomes. I echo some of the aspects about the commonality of a lot of the nursing carers, the needs of people with neurological conditions. At Lucky, we look after 35 different conditions, and we also provide just under 6,500 dress-byte days, and we look after people from 26 local authorities. I think that we're able to talk quite effectively throughout Scotland. We have developed our service specifically, not just about dress-byte, but what we call the Lucky MOT, which I think you probably read about. It means that we can fully assess our physical, our guest's physical and emotional requirements when they're with us. Every guest gets a wheelchair assessment, every guest gets weighed, which is really difficult in the community. Everybody gets a wheelchair alignment because of the degeneration. It can change. Everybody gets pressure mapped. Everybody gets a full body map. Everybody gets an oral assessment. We're working with volunteer pharmacists to do spot polypharmacy. We're a nurse-led and physio-led service that we are able to impact not just on the guests but their carers as well, because carers can come and stay, if they so wish, with their partner. We can work with them as a couple or individually on both their physical and emotional requirements. Last year, we did over 800 anticipatory or preventative interventions. I think that using third sector a lot more could be very beneficial. On the specialist nurse's point, this is quite a complex area. There's a range of nursing interventions at different stages of different conditions, and there's quite a lot of variety in the role that specialist nurses in different conditions perform. An epilepsy specialist nurse will be offering a very different package of support to an MND nurse specialist. It's quite important to look at the whole of the journey, not just the in-depth, advanced neurological care that's provided, but also the stuff up front, where in the condition I work in in my day job, for example, a Parkinson's nurse specialist at diagnosis advising people about the risk of impulse control disorders from the medication they're taking and dealing with the mop-up of that is actually a really important part of the support that they provide, which isn't relevant to other conditions, but is distinct. The specialist nurse's point is really quite broad, and I think one of the opportunities in the action plan work is to really deal, as we've said, with the breadth of experience that there is, and try and make sure that we have pathways and general rules that apply where they're general, but also recognise that there's significant differences in the needs of different people in the community. In 2009, when the standards were written, we didn't have health and social care integration, and I know other members will probably talk more detailed about that, so obviously the community care, the best place to have your care in your home for your health, wellbeing and your family will be part of new standards being developed. I mean, feel free to comment on that. I mean, we all welcome integration. I mean, there's absolutely nobody in this room that would not want integration. However, we would say that it is quite young, embryonic, and just now there's a lot of people that are falling down in the cracks of that. I'm not saying that in 10 years time it will not be absolutely fantastic, but until we manage to get out of the silos and the separate thinking and get much more of the joined-up thinking, a lot of people are falling down in the silos of that just now. In just in terms of the health and social care partners—you know, they are embryonic at the moment, but I think as well in terms of getting it right, we have to see strategic commissioning guidance to the health and social care partnerships. They're really quite inexperienced in the delivery of that pathway approach for neurological conditions, so I would welcome some commissioning guidance to the partnerships so that we get away from generic tendering, generic commissioning, which doesn't offer the clients with complex neurological conditions the right service at the right time. A small follow-up—I'm so pleased that you mentioned epilepsy, because I had been given a pie chart and epilepsy isn't mentioned in it at all under neurological diseases, and we're talking about the standards of the 2009 one. It does mention epilepsy, but there are only specific indicators for epilepsy. Could you perhaps expand on that a bit? You would expect the new standards to be looking more at the situation of epilepsy, and I may come on later on to the specialist nurses, but I just wondered what your thoughts on that, because it doesn't mention the fact that conditions that it just says give specific in the 2009 plan to epilepsy and even doesn't mention it in the pie chart. I just wonder if it's got to be specifically. In the older standards, there was some mention of rapidity of access to care for epilepsy in first seizure. We know that the epilepsy subgroup in the National Advisory Committee for Neurological Conditions is one of the more active ones, and it's been very proactive in setting out their ambitions for how epilepsy care should shape up across all areas in Scotland. Yes, it's very much at the heart of what the NACNC will be doing, and the subgroup representative is very prominent in that committee. I'm surprised that there's no mention of it. As you know, epilepsy is one of the most common neurological disorders. It's at the other end of the spectrum that many of our witnesses will talk about today—the residential care, severe, progressive degenerative conditions. Epilepsies are one where, with good medical care and intervention, most people will be able to lead a full life and be seizure free, but they need the good care, both from doctors and nurses, to allow for that. Just to add on the standards development group, Epilepsy Scotland is represented on that group, and as I understand it, at the moment, the condition-specific standards for epilepsy are deemed to be continuing, while the generic standards are resolved. However, I've got no doubt that colleagues in Epilepsy Scotland will be making the case for the best possible support. The other thing that I'm aware of is that there was a fairly recently published sign guideline on the management of epilepsy, and I know that that's formed a great part of the work of the Epilepsy group, which Dr Leitch referred to. The issue that has been said with the existing standards is the lack of implementation in many cases. Who will be responsible for monitoring the effectiveness of the plan and the implementation of the standards? What will happen if standards are not provided up to scratch? Does the National Advisory Committee, which has been mentioned, have the authority to play an active partner? Clearly, we've heard it's important, but we've also heard it needs to be reinvigorated and re-empowered. That must give some cause for concern. I wonder what witnesses would say to those key issues. I think that it's safe to say that, within the third sector community, there are some on-going concerns about how new standards will be implemented and how they'll be monitored. We are aware that NHS Health Improvement Scotland is stepping back from doing that scrutiny role. It is leaving a gap in terms of who will provide that scrutiny. Lessons from history tell us that the neurological standards really did lose energy at the point at which NHS Health Improvement Scotland loosened the reins the last time. After the investment in boards getting the £1.2 million to do local improvement work, which is referenced, it became much more difficult to hold them to account. Although the former national advisory group did an attempt to do that, it wasn't really resourced to do it properly. As Pamela said, I think that there is a case for more resourcing for the national advisory committee if it is going to be the body that takes on that role. I'll be interested to see how that work emerges. The recent work that was carried out by Sue Ryder about the plans within each of the 31 IgBs, was quite worrying in the fact that there were no plans in some areas. For all of a sudden, if there's no teeth behind it, when you've got really difficult decisions to make as far as budgets are concerned, there is an element of, well, we don't have to adhere to that, so let's just see if we've got it. It's a shame to say that, but that is the case. As I said earlier, it is about the resource to be able to implement these standards and to scrutinise them. I think that's essential. Where that lies, that resource lies if it's with Health Improvement Scotland or with the national advisory group. That's another question altogether, but scrutinised it must be or else, as Mary said, our report quite clearly stated that every health authority was supposed to have a national action plan for neurology. In fact, in 2017, only four of them had one that wasn't active and was due to expire, so it's absolutely critical that we get this right in order to not revert to what we currently have. My experience of this, and we've got some money in fourth valley around this, but short-term, non-recurrent bits of money aren't actually very much good for anything, because you can't make long-term investments with it. The other problem is when you measure services and you're auditing for accountability, which is what it sounds like we're talking here, a minimum set of standards that must be achieved, if the board doesn't have the resource to recruit or provide the service, then you end up setting people locally up to fail, because all they're going to do is report that they can't actually achieve what they've been asked to achieve and nobody wants to be involved in that kind of activity if there's nothing that can be done to sort it. The elephant in the room is that the reason why people are concerned is because neurological services in Scotland are not optimal. The reason they're not optimal isn't because we don't audit them enough, it's because we don't resource them well enough. If there's an attempt to look at an audit system, and a standard system is some sort of swap to say, we're doing something because something must be done, then it's a waste of everybody's time. Actually investing in the primary services that we're trying to audit is where the resource should be going and where the activity should be going. John Paul. To echo some of what's been said earlier on, we have to make absolutely sure that they're resourced enough and empowered that they can speak truth to power, that they can say when things are not going well and that requires the resource so that they can work out what's not going well and secondly the mechanism by which they can report upwards. If I can say one other thing, one of the recurrent themes around the advisory group in its current form and in its previous form, the national advisory group was that really we weren't encouraged to talk about workforce. Workforce was something, the W word should not be mentioned because if you start talking about workforce you might have to talk about recurrent money to spend on more staff at the front line and in chronic care for neurological conditions and really you cannot have a committee like NACNC which is bidden to keep away from sensitive issues politically sending and if you want the truth then you're going to have to be prepared for some uncomfortable news about workforce. It's about priorities at board level or at government level? You mean priorities for funding? Well boards are underfunded and most of them are running a deficit and most of them are scrabbling very hard to save what money they can, not to fill posts if they can avoid filling posts to salary gap and all that stuff because they're skint and if you had chief execs in here they would tell you that they're largely skint. We do and we hear it, yes. I mean resource to me we can't get away from the fact that you know there is budgetary pressures but I think in terms of kind of planning for neurology going forward we do need to think about where resources are currently allocated and they're not necessarily allocated in the right way. They could be if we're talking about a pathway approach we're ready to talk about low level services and for people to support them in the community a lot longer and be that kind of with benefits or be it with managing their own conditions through a specialist nurse or specialist advisers and we don't invest in that level which means they go into we only hear from them when they go into crisis which means they go into the acute sector with which is an expensive hospital stay and that can it can be avoided with the right preventative services and that's the pathway approach to neurological care in its entirety isn't resourced in the right way so I think we need a radical reshape of the current services in order to free up resources to be able to deliver things in a very different way which brings care closer to home which is what we all want and avoids costly hospital interventions which are not great for the economy and certainly not great in terms of outcomes for that individual or their families. Pamela has just said that because a lot of the work that we do at Lucky doesn't actually take a lot of time when you're with the guest and it doesn't take a lot of resource when you're actually with the guest but one of the major things is pressure mapping showing one of our guests that when they sit on their wheelchair we put a little tiny little mat thing underneath them that's linked to a computer we can see the red areas that are likely to break down we work with the guest using core exercises and physiotherapy on how to avoid that now the amount of money that that saves the NHS if that skin does not break down is huge now it again it's difficult to quantify but again we're working with with people that are high resource individuals and also their carers that we can work together with them to make sure that we're doing things that are going to make their quality of life better so coming to Lucky it's not just about a fun holiday respite aspect the actual real miracle of Lucky is what we equip our guest to go home with and that is a quality of life it's a statement. One of the frustrations in the past has been that while in our glorious Scottish health service the money doesn't follow the patient that means that the savings also don't follow the patient so over the last 10 years we've reduced the bed days that we use in Lothian by about 75 per cent which is a substantial saving but those funds have just disappeared they've not reverted to the neurology service to allow local reinvestment to support the activity and that's I think a difficulty if we if we get beyond the we'd like more money please to how can we be more efficient more effective prioritised better with the money the funds we've got which you know is where we are then I think the issue is that we have to decide what our priorities are because we can't have everything being a priority and we've got to think about key areas for improvement rather than saying this is the minimum standard which everyone should aspire to and everyone really knows that it's hopelessly optimistic and we're just setting ourselves up to fail which is my emphasis on having a small number of areas where we think it wouldn't take very much resource to make really quite a major difference in the experience of people with these conditions I'm trying to get some kind of local or national consensus about what they should be and a way of measuring it and I think that's the way that we can get most out of this process very much Pamela Mackenzie I'd just like to pick up on some of the points you raised in your written submission with regard to health and social care partnerships you mentioned obviously that the partnerships are under no compulsion to specifically include neurological services within their remit unlike other service areas such as palliative care and there is little or no mention of care and support for people with neurological conditions in any HSPCs strategic plan why do you think then that the partnerships don't recognise it's part of their responsibility to deliver neurological services is it just because it's not compulsory or is there what's going on there I mean I think there's a couple of things really I think we each authority area in terms of population the numbers will not be as big as it's seen as a priority area so older people will always take precedence because there's a growing number of older people and they need to get shift the balance of where the care is being provided there so I think there's something in terms of the number but there's also that it just is not a requirement so they get lumped into other categories so you will normally see neurological conditions in under physical disability for instance so if you looked at joint commissioning plans for the integration bodies at the moment you will see some loose mention of neurology in under physical disability but not in its own right and I think as I said earlier I think you know where we need we need to get commissioning for neurological services right so there needs to be guidance and expertise and I don't think it's a conscious ignoring of the fact but I think it's just it's fallen off the political radar it's fallen off everybody's radar and it's only in the last 18 months that things have started to be highlighted in terms of real inadequacies that people with neurological conditions are actually living with on a day to day basis. I'd just like to add to that the neurological conditions that we were talking about are all palliative they're not going to get better you know and it's unfortunately it's just beginning to be recognised within the palliative care strategy that you know the neurological conditions are a palliative situation we don't get parity in funding but we are we're not end of life well we're not end of life but you know and you know we unfortunately it does happen but but all our conditions are palliative they're not going to get better. I just want to switch back to to the question about why it is that neurology isn't included way back when the legislation was going through the Scottish Government didn't exercise about where which services would be compulsorily part of integration and neurology wasn't one of those and I think that that's part of where the splitter eyes is it's seen as an acute specialty without recognising the huge amount of work that health and social care partnerships are actually doing supporting people living day to day with neurological conditions they don't separate it out that way because neurology is seen as an acute specialist specialty around that is to actually give them delegated authority in which to be able to develop plans for for commissioning neurological services supplementary then Pamela McKenzie in your evidence you highlight that disconnect at local level and the kind of disparity across the country in terms of how services are provided so in 2017 you'd ask health boards and local authorities if they had a specialist neurological rehabilitation team only a third of health boards has such a team out of 32 local authorities that we have and only five had such a team I think which was specifically with regard to specialist occupational therapy and many local authorities and health boards believed a service or partial service was available locally but did not necessarily provide it themselves this paints a picture of a complex and piecemeal system what's been the impact then on service users with regard to how that piecemeal system is delivered on the ground well I think it is kind of a postcode lottery in terms of you know you mentioned you know where there is their shortfalls in terms of community rehabilitation teams and so if you happen to be able to live where there is one then you may have access to it but only if you've been pointed in that direction a lot of the gps except I will not know that even exists in that piece of data actually was real confusion over actually local authorities thinking that health did it and health thinking local authorities did it in that same geographical area so there was a real disconnect there in terms of that piece but we do know that if you have good rehabilitation services in both preventative and acquired neurological conditions it can have a huge impact on people's wellbeing and whilst you know progressive neurological conditions won't necessarily be prevented actually the health complications that can ensue through rehabilitation can be can I ask what the neurologist is of what IGB should be doing in this space yeah again I want to stress the spectrum of conditions we talk about here and there's always a danger of unintended consequences if we divert all neurology services or the majority of neurology services towards the chronic degenerative condition we will ignore much of the acute work that needs to be done we cannot take people away from the front line deal with these acute presentations of neurological problems to do other things and expect no adverse events otherwise so it's again just to stress yeah I'm absolutely sure that the work that Sue Rider and Mary's Care Own Do absolutely vital and will be state of that but there are other aspects of neurology care as well I was I'll be honest slightly concerned when the Sue Rider report came out saying that in Scotland we were failing neurological patients but we're failing some patients with one end of a spectrum of neurological disorder we have to look at the big spectrum and the big problem here a very poor unintended consequence could be a derogation of acute neurology care if we focus too much on the long-term conditions yes we need to look at all of these things I'm not saying anyone should be ignored or we should ignore these pressing matters of long-term care issues but we can't forget what neurology means in its totality welcome and then Tath and then welcome yeah yeah so so I think there's a there's a slight danger of this one size fits all thing that you need of a specialist occupational therapist for every patient in the community so imagine that you're dealing with outreach from the Ascle Ainsley hospital here with people with acquired brain injury then clearly you need that high-level specialist but then if you're repatriated to I don't know accltybwy or somewhere where you live then then it might be more reasonable to have someone who's got more generic skills who can cover the you know a range of different patients in that population area to say that to say that every board in every service should have a kind of full set of things that we want I don't think necessarily is the most cost effective way to provide it and I think there should be a an allowance for flexibility in local implementation according to local needs and also local patterns of disease which vary in different parts of Scotland. I just wanted to say if I wanted to know what was happening in neurological services I'm not sure that either health boards or local authorities would necessarily know what's on the ground and I think that's one of the big issues so my suspicion is that the data looks very bad but actually if you have survived a stroke then there will be some specialist support for you locally in most parts of Scotland there will be some specialist support for people with MS people with Parkinson's that's actually provided in the community which isn't reflected in the answers that Sue Ida got from their report and I think one of the real challenges is this is a really complex picture it's really complicated difficult to measure and difficult toward it so what we need to do is get to a point where we've agreed what we think there is and you know we can use all the intelligence that we can get from different agencies to really map what's where and where it's going and that's one of the really good things that I think that the national advisory committee is looking at because it's only when we really know that that we can move forward and work out what needs to change. I think just to give some reassurance in terms of what our report in 2016 and 17 set out to achieve and it wasn't to discredit the acute services in any way shape or form and indeed you know I know there is some great work going on there and you know we actually you know acknowledge that we aren't just about this the high end care for people we do very low level service in terms of self-management at Sue Ryder as well as care at home and so we you know we do cover a wide gambit of care provision offering choice for the individual to take up Malcolm's point as well about kind of you know if it's that specialism in our report in one of the conclusions we're actually talking about educating more generalist providers so that they can indeed be able to provide a quality service so we don't have to have a specialist nurse in Acaltybuwy but we you may be able to educate and support the providers who are currently delivering care at home or community services in Acaltybuwy to be able to deliver a better service so that people can stay at home longer their conditions managed better and they have less health impacts. Thank you very much. Brian Whittle Good morning to the panel I think just touched on that the potential lack of data to inform the development of an action plan and I noted some of the submissions that prevalence data is lacking in service provision data is hard to identify and or missing in relation to neurologic conditions and I know that Professor McLeod you were calling for the incorporation of the the chi tagging of activity in primary care across social care activity. I think with that in mind I wondered how this lack of specific data is hampering provision of services for people with neurologic conditions especially since most of those people have a diagnosis that is known to the health service and the social care services and really why why is that lack of data and perhaps what data is required. So we don't have disease registries so we see patients in our neurology clinic that come to us we write the GP a letter the GP gets the letter and we maybe need to see them again and maybe we don't but we don't feed that information into a central database of who's got what condition and there's good reasons for that not just that it would be burdensome to do but privacy and all and all and all which means that when people ask us you know how many patients do you have with my senior in your patch we don't actually know unless we troll through our last year's 10 000 letters to try and work out what what those numbers are now it would be feasible potentially to have a registry of patients seen in neurology clinics with neurology diagnoses and what those diagnoses were but actually that would then miss the large number of patients who have previously been seen in neurology clinics and discharged for for care in the community so patients with epilepsy might not have been seen in the clinic for many years for good reason because they don't need to be seen and it would also miss that large part of the iceberg which floats underwater sorry which sits underwater of patients with neurological impairments who've never been seen at a neurology clinic because they're managed in primary care so while I think it's a nice idea that you would have a kind of list of where people were and what services they were using and what their needs were I think it's a it's a bit more complicated to actually to try and implement that having said that the idea that where people impact on publicly provided services whether they're in in health or social care that that activity is recorded through the community health index through the chi number then that at least allows us to see where patients are so for instance the the issue of valprate in pregnancy one of our epilepsy drugs is at risk in pregnancy we do have chi linkage for patients picking up a prescription of valprate from their community chemist from their community pharmacy and we do have data for chi linkage of people who interact with our obstetric services so by matching those numbers we can see the people with epilepsy and the more we collect chi the richer that source of data becomes for understanding where our patients are and what services they're accessing accessing Can I just say I've been working with the ISD there's a lot of data as far as NHS is concerned but the actual figures that they're collating as far as social services and local authorities concerned is still very young but they are working on trying to get a bigger picture of what's happening in the community as well as what's happening within acute services the other aspect is I'm not quite sure of what the effect of SPIR will have the the data service that's being used with GP surgeries and we're hoping that that will certainly bring a lot more back but it's still very young and it's just being I think rolled out in the west of Scotland just now so I don't know what effect that would have on it I'm not just interested in the collection of data is there the potential there for the sort of the anonymity and we were suggesting that with the anonymity of the patient and the data it's there's not a lot of taxing somebody to the data in that respect I also wondered if as you alluded to how the tagging of the activity across primary and social care through so much kind of more benefit development of the services so for instance one of the things that we might want to see is if patients are seen in a neurology clinic and we discharge them because the headache we think we've sorted it would be interesting to know if they were seeing their GP once in a blue moon after that or once a week and if you had a chi tagging for each GP visit you would get a sense of how much we because because if neurology services are in difficulty just now primary care is in in great great difficulty in this country there are many practices which are really struggling and to the extent that we in secondary care can help alleviate some of that burden on primary care it's really important so if we are seeing people and just chucking them back the gps and they're creating burden in primary care for the gps or practice nurses that's not a good thing but we don't know that just now because we don't know what the amount of activity is there but these are very low level process activity measures getting outcome measures on quality of life which is the main thing or premature death or A&E attendances or whatever you can you can do little bits of that but it's very difficult to get to get agreed measures and it's quite burdensome to collect but burdensome with the patient I mean not for the service to collect that information for people on a recurrent basis unless they can be convinced and we can be confident that we're actually going to be able to do something useful with the information one the problems with the data and audit group last time round was that we were collecting all this information but at the end of the day there was the workforce issue that John Paul has alluded to that there was no prospect of actually getting very much more in the way of services or neurologists or whatever so what was actually going to change for these patients by us simply demonstrating that there was a problem and I think across neurology services there was a lack of confidence that this was going to be anything very much more than an elaborate window dressing exercise I'm afraid which I think is one of the reasons why the energy fell away thank you very much thank you Miles Briggs thank you convener and good morning to the panel I wanted to touch upon community based services and community care and specifically the submission by Sue Ryder which identified 86 percent of people with neurological conditions were in residential care homes for the elderly and I think that equated to about 250 younger adults so I wondered what did the panel think could be done to try to address this and the issue of inappropriate care places in Scotland I think I mean that was the we don't know if that data is actually correct we think it is actually much more than that and what we will know in October is that the national care home sensors have actually put neurological congestion down now as part of the analysis of that data so we probably have some more accurate information in terms of the number of younger people in older people's facilities I think I think there's some things that we can do to support because there isn't going to be specialist provision for everybody but I think as I said earlier about the community services there's ways in which we can support older people's care homes to be able to support people with complex neurological conditions I'm not saying that the environment might not be right but there are ways in which we can support staff to be better educated around these complex conditions and manage them better so I think that's something that we can do you know quite quickly it will need to be resourced but it is something I think we could manage quite well I think that we could be using more community provision going into nursing homes for people who have got these complex conditions, physios, occupational therapists so that their needs are being met when we highlighted that as part of the report we had many people come to us saying you know my relative is in an older people's care home I'm in despair because that was the only place that we could put them you know they're you know early 50s on the back of that we have had one such case that actually things have very much improved for them in terms of they're still in that care home but they have now having some chest physio some postural management and actually their quality of life is significantly enhanced but the placement hasn't actually changed so I think there's things that that can be done because we're not going to have specialist services everywhere it would be wonderful if we did and but and I think we should be aspirationally enough to think that we have some more specialist residential provision across Scotland a more probably from a regionalised approach but I think we that's there's things that we could do there that could help improve the situation. Mary and then Tanneth we do work with a lot of our guests are in residential care inappropriately and we work very closely with residential areas because we do things like if we weighing our guests we discover that they've lost weight and that our gained weight and that their pressure map their mattress is set at the wrong settings but yet that's what's been used in the care home we are also very able to liaise with them about wheelchair replacements or wheelchair modifications we're also very able to liaise with their local where they are residential at the time with their diet and what they require for healing for pressure areas you know so we do a lot of work already with people that come to us for maybe four night break however they are residential somewhere else but we've got some people with primary progressive ms who you know early thirties and they're in a in a care home for the elderly psycho geriatric and it's very upsetting we had one guest that came from Wick and it was public the local community funded for her to come down and Loganair provided the flights and the difference to her quality of life was amazing in those two weeks and that's what she took back also to the care home thanks tanneth and then welcome yeah i mean the issue of um what happens to younger people with neurological conditions that need residential care is a complex one we're aware of people who are younger who found it very difficult to find a place even in an older person's care home because older people's care homes won't take them um and so that that creates that creates a real barrier and in terms of solutions i just wanted to flag up that a number of the national charities um and local ones do provide training along the lines that suide provides so i know Huntington's association and Parkinson's UK both run cascade learning for care home workers to help them to understand what they need to do to support them and certainly the Parkinson's scheme works with home care workers as well to support people better at home so there are solutions out there but it tends to be on a condition specific basis rather than more generically because there aren't any generic charities to provide that so this is a small group of patients but it's complex so there are very young teenagers adults with uh with neuromuscular problems like to send dystrophy who've got complex physical needs there are patients with multiple sclerosis that we've heard of there's Huntington's and that's got physical and emotional psychological problems which need management and perhaps the the greatest well of untapped need is young head injury patients who've got physical and behavioral difficulties after the head injury for which there is very very patchy and limited provision now one of the one of the tangible difficulties here is that if i open a facility for young chronically sick patients with 10 beds in 4th valley it will be full in about six months and because these young people will live for decades it will remain full for decades and there will be no more space available and so in providing these facilities we need to think about how empty we want them to be because we always want them to be a little bit empty and then how does that fit with the business model of whoever is providing it because they're going to be running at 70 capacity all the time just so that they can have space to take people when they need it and it's one of the you know if i don't know what John Paul's view is but it's one of the tragedies of working as a clinician is seeing people in the wrong care setting usually an acute hospital because they're backed up down the line because there isn't an appropriate place where they can maximise the quality of life now there's always a there's always a balance to be struck between them being near to their home and to their family and being in a centre of expertise and excellence but just now i'm afraid for most people they're neither and that's very disappointing again this is a reflection of the different perspectives we will have on neurological disorders for a very good reason and it does strike me that there's been an estimate of 200 patients 250 patients across the country who are young but in an older care home you think it's much more than that you've got other data is this one of the parts of data that we really need to firm up on is this a problem that's affecting hundreds of patients or dozens of patients i think we'd really need to know this and if we're going to come out with some firm recommendations about where we go for catering with residential care we really need to have this scoped properly thank you just as a you know in terms of permanent care places but in terms of respite i wanted to to also look at that aspect i was lucky enough to visit um lookie house last year and just was blown away by the services you were providing couldn't meet some of the guests because they were away out on a microlight flight and that is a sort of break which you know i think everyone want their loved ones to actually experience in a quality break but in other parts of Scotland it's quite clear that a local old people's home does become the respite and many people don't want to put their loved ones in that setting do you have a picture across Scotland of what currently that is like and where there's real need for better investment in respite or or linking services into what we currently have i think mary you mentioned 26 local authorities so my my question was really what are the others doing and what quality of respite do they then have i think to come back to it it's a postcode lottery and also we don't have enough data to fully i wouldn't like to give a definitive answer to that however we do know that the local authorities that we deal with the some of them will not send anybody to respite you know if they can or else they'll only send them to respite to a care of the elderly environment because it will be cheaper than coming to lookie now lookie is only 50 with the guess or charge 50 of what the actual cost is we fundraise the rest of it however because it is so person-centred and we do so many anticipatory and preventive interventions it is slightly more expensive than a care home but then if you look on that's the short term looking at it if you look on the long term with the preventive aspect we are actually saving money for so many people and also giving quality of life and we're also talking about emotional support providing counselling because so many people are quite angry about their condition and the carers especially they've not got the condition but their life has changed unbelievably so it's looking at the whole picture but it's very difficult to cost out and I do take John Paul's point that you know we tend to look after the high end and the very high dependency however that's only two thirds another third of our guess or what we would term the lower end so you know we are able to work across the sector in all aspects but respite is incredibly patchy and the local authorities and even SDS is a great thing in concept but when you're dealing with cognition and fatigue and things those things it's difficult to make decisions about your SDS package if you can't compute every all the details that you need to have and stress carers are already so stressed actually go through the SDS assessment so it tends to end up the easiest way that they can do it and that might not be the best aspect for them. I would just make the observation that for patients who've got that high level of disability who require and benefit from respite care there's this danger of apartheid because my understanding of the new recommendations is that traumatic brain injury is not included on the list of neurological conditions but the needs of those patients are almost identical to our patients with Huntington's or whatever and there is a real danger that we're siloed in our approach to audit rather than saying this is about the services for people who who would benefit from periods of respite irregardless of whether they've got whether they've got another line neurological condition or what their condition is and I think it's important to bear that in mind. One of the things that people report to us really across the complex conditions is that it can be very difficult to get a respite place at all because of the issues about the complexity of need that somebody has means that there's a limited number of places that will actually take that on. I'd really echo Malcolm's point about the scope of need that there is and the lack of suitable respite across all the conditions and the thing that we haven't really touched on very much is the extent of the impact that living with somebody with a neurological condition has on families and carers and the essential nature of providing respite to give people a break from people who typically at this more complex end have needs across all aspects of their life and pretty much constant supervision as well as the practical tasks of dressing and feeding and all of that kind of thing and it really does have an immense impact on carers who worry very much about whether those needs will be met when somebody goes into respite and certainly in my experience I'm aware of people who will resist respite because of their concerns despite the impact that that's having on their health and their ability to cope with their workload. I think the panel have described the lack of respite very well and I think that it is a postcode lottery. What I would say as well is that we've been exploring, I hear what Tannas said completely and agree with it, people will resist respite placements even at the detriment of their own health because they will not have their loved one go into somewhere that they deem is inappropriate. Interesting, we've been working with Angus Health and Social Care partnership on respite at home over the last couple of years which has been quite an interesting project in terms of people are far more comfortable to have that respite at home even to go and have a round of golf and a couple of drinks with their mate rather than going in for two weeks respite into an older people's service. We can start to, there are solutions to traditional residential respite, not that that isn't necessary and isn't hugely beneficial but there are other ways of looking at that and affording people choice at the end of the day. It's actually on that point, I was just going to say that there are models of respite that are being developed, I know in Dumfries and Galloway for instance, looking at respite being delivered in patients homes or persons homes but yes there are challenges when there's really really specialist needs required especially for children with neurological conditions so acorn house in Dumfries for instance so you picked up on that point before I actually had a chance to ask you about it. I totally agree that there is a lot of flexibility in how people would determine how they would like to spend their respite and that's absolutely right however it does come to a point that it's just too stressful for so many people because if people are coming into their house they've got to train them up, they've got to help them understand, they've got to you know and actually a lot of people find that more stressful than you know if they trust a you know somewhere and that's what we say to our guests and their carers it is a daunting experience sometimes to come into respite I understand that but we usually say give us two sleeps and everything will be fine after that because when they come to us they're one of 20 people with a disability at home they're only one person with a disability when they come to us we were looking after you know we've got check in check out it's it's we run it like a country house hotel ambience if we can but we look after very complex conditions but we have that relaxed atmosphere that makes it so much easier and then it takes you know 24 hours for us to get to know you and you to get to know us but after that we're all fine because this is what we do this is what we're experienced in we're not going in as a team that maybe are not completely offy with the situation. Thank you very much. I have to correct something that I mentioned about epilepsy in the pie chart it's in a very very small dark red piece but so please correct that in the minutes if you don't mind the point I was trying to make in the epilepsy was because head injury can cause brain injury can cause epilepsy and that's outside the pie chart because it's not recognising who said yourself Professor McLeod so that was a point I was trying to make so apologies for that if I misleady anybody on that particular one mentioned respite and obviously volunteer workers as well and those health and social care professionals too. I just wonder about your thoughts and I think I may know what they are but I need to answer them in this particular question do we think that further investment is needed in specialist nurses for people with neurological conditions? I'll just fire that out I'm sure it'll all be yes but I'll find out anyway and perhaps if you could say why they would be more needed we need more investment than what they bring to people with neurological conditions that others can't. I think we've touched on before that there is a generic aspect to many aspects of the nursing care however there are also specifics and so I would think this is a kind of two-pronged approach one would be the generous aspect that would counter you don't come across most a lot of aspects of the training of the needs however as Tanneth has already explained there are some but it doesn't mean that you can't pick up on things you know once somebody has gone through the specialist nurse the the neuro and then they come into a situation we deal with Parkinson's we deal with MND we deal with non-invasive ventilation you know it's about having the broad spectrum aspect of ability as well but there is a need at certain stages throughout the pathway that they will need specialist nursing care. The simple answer would be yes but it's much more complex than that and I think you know we've been describing this morning about people's journey from acute right through to end of life and at various points they will need to access specialist advice and support so whilst it would be great to have more resource that might not necessarily be the best use of resource and I think there are other ways of you know supporting people and the reason I say that is that we've got we've got some tests at the moment across the UK where we're providing lower level services in terms of self-management which are nurse led and we've got one CNS community nurse specialist who oversees that project but it is healthcare advisors who are supporting people and live with their condition and supporting them to manage their condition so there are other more there are more cost-effect ways of using the limited resources we have to be able to benefit people so whilst specialist nurses are fantastic and you know absolutely I would advocate for them I wouldn't just want to say that's the only solution to people's problems. My first response as a health professional when asked if we need more resources of course is going to be to say yes but the extent of that is important and working out the extent of that will require more data this is where the NACNC's bid to scope services across the country will be so important and actually if we can work out for instance how many patients with a new diagnosis of epilepsy don't get to see the nurse then we've got a measure of how many more epilepsy specialist nurses we need if we can work out how many more people with Parkinson's don't get regular review of the medication with the nurse and don't get help at home with anything else they need from the nurse then we can answer that question properly so I'll say yes but I'll not know how big a yes that is until we get the data and I think we should be charging the NACNC with completing their scope in the services so that I can tell you how big that yes should be. I agree with Pamela's point that it's not just nurses and there's some of the role which is disease specific but there's some signposting what services are there's some life skills coaching there's some counselling that goes on and different healthcare professionals can have those skills I'd make a couple of observations firstly across our different diseases we've got a different case load acceptable case load burden for nurses so a community psychiatric nurse might look after 20 or 30 patients a motor neurone disease nurse might have 20 or 30 patients on their patch same with the Huntington's nurse for an epilepsy or a Parkinson's disease nurse they're dealing with hundreds sometimes a thousand patients and what's interesting is is that the nurses which tend to have fewer patients integrate much better across the primary secondary care divide than ones who are dealing with hundreds of patients with epilepsy seeing them as a hospital based epilepsy specialist nurse so I think there are opportunities if we have increased specialist nurse numbers for better integration with with social care the second thing is that for I think actually for most neurology units who have specialist nurses there's a problem of the continuity of the service when a nurse retires or moves on if you've got a very small number so we've got two multiple sclerosis nurses which is good because if and when our senior nurse decides that she's had enough and she's going to go off and retire then we've got a ready made replacement to step up into her shoes but in other conditions we've only got one and so someone retires and you're having to strain someone from scratch again and so there's not really a career structure for neurology specialist nurses and to my mind a structure which started off with someone deploying that generic neurology specialist nurse skills and then moving later in career into a specialisation in a particular condition would give us a career structure which would allow us to have continuity not long after I started in fourth valley our our epilepsy specialist nurse left and we went eight months before we could appoint another one and it was very very difficult for patients and for us and that's partly because there's such a small number of these individuals that they're like gold dust. I think that the Neurological Alliance would say yes we would be highlighting the role that specialist nurses often have on relieving the burden on consultant colleagues by identifying the people that really need to see the consultant rather than rather than not and we would probably also be highlighting the fact it isn't just about nursing support and I think probably physiotherapy and occupational therapy would be two of the other sort of allied health professionals where people would be looking at using professionals with specific insight into neurological issues rather than general musculoskeletal ones and general issues because they are so crucial to helping people to attain function and and do well and I think that that applies across all conditions not just the degenerative ones. I was reading through the Sue Riders written submission before the committee and I was quite interested to see that you said you're working with the new economics foundation to develop an economic model on neurological care and hopefully to show the positive impact that that could have on the public purse. Would you be able to tell us a little bit more about that please? Fresh off the press it is. I got this data only yesterday so yeah we've been doing a piece of work because what we've not been able to do and what we kind of keep saying is that investment will save and we haven't you know it's all anecdotal we haven't been able to kind of demonstrate so we've been working with the new economics foundation and we've taken three case studies so someone with an acquired brain injury someone with a motor neuron disease and someone with Huntington's disease now these are real people that we know and we've taken their their life to date and we've mapped it against kind of a reactive a pathway and a proactive pathway and some have had a proactive pathway and some have had a very reactive pathway. I've not analysed this in great detail but just to give you kind of and I can share this with committee at a you know at a later date I'm very happy once we have our report to share that with you but just to give you the sort of the percentages so for the person with acquired brain injury if they follow reactive versus proactive there will be savings to the health economy of 75 per cent so that's if they go through a proper rehabilitation programme and their condition is improved as opposed to them not getting the right rehab or that continued rehab that they need so I mean that's a massive percentage and actually I'm shocked to you know to see that moving on to the Huntington's disease again it was 45 per cent in terms of cost benefit to the health economy if there is a proper pathway followed for the management of people with those conditions and you won't be surprised the same for motor neurone disease at 56 per cent so this there's a lot of detail in the back of this in terms of what that how the costings have they've come out we have got costings in terms of per year and we've extrapolated those costs for the for an average lifetime as well so we will be able to share that with committee once we have had the time to digest it as I say I've got this paper sellotape together so that I could demonstrate this for you today that sounds very interesting very positive I'm wondering if the panel are aware of any other cost benefit analysis there are similar to that that might help with you know national planning or is that the only one that we have we've done some work with ISD as I originally stated that we have been working out you know if a guest comes to us at the cost of you know certain to say £2,000 for the fortnight if they had to go into or to they had to go into hospital which a lot of our guests have to do if they're non-based ventilation and care homes will not accept that responsibility we reckon that that would be you know obviously high dependency so it's probably saving about £5,000 a week in the case of epilepsy and the very refractory epilepsies that may require some medium-term residential care we've got the quarriers Scottish Epilepsy Centre in Glasgow which is absolutely state-of-the-art world-class epilepsy centre and we know that although it may be a short-term cost exactly as Mary's clarified with her clients when we admit patients to Scottish Epilepsy Centre it may have a short-term cost but there is a definite payoff in reducing need for acute care emergency admissions assessments, accident emergency ambulance journeys all these things are saved and there is a definite net saving I don't have the figures to hand but that was a bit of work done by Jerry The Hagan and Maria Ottover in quarriers. So with my professorial rather than neurological hat on I'm always slightly dubious of data that I get from drugs companies about how good their drugs are and I think we need to be quite careful that we have independent cost utility cost benefit analysis of these various services because clearly it's in the interests of people providing their services to show how valuable they are now I don't doubt that they have value but I think if you're making public resource allocation decisions you want to do that on the basis of the best information that you have and what we've you know running theme through today has been that our starting point information isn't actually very good for how many patients there are what the demand is what the impact of these various services might be and therefore what the cost saving might be now of course we have to proceed on the basis of the best information that we have available but if you were to read I hope my employers aren't listening but if you were to read some of the business cases that I make about how if they give me a little bit of money for this it will transform the whole of NHS fourth valley you know you would say that I was taking an optimistic gloss on what might be possible and I think we just need to be careful about that thank you thank you convener I think it's been a very interesting session I think one thing that's key to delivering the best neurological services obviously is the staff that we have in place and you know I certainly experienced that lookie house and visiting other facilities across scotland and I just like to understand and my Malcolm McLeod you've stated that that most if not all neurology services in Scotland struggle to meet performance targets for both urgent and routine new patient referrals and you speak about delays for follow-up appointments so I also say there's a problem recruiting to neurology posts so I just like to understand how do these delays affect the patients and what can we do about solving the recruitment problem so so we've got recent experience of this and forth but when I was talking to John Paul on the way and when I were allowed the idea that there would be a consultant neurology position in Scotland vacant without a single applicant would would have been incredible and yet we had a post that we didn't get a single applicant for and I'd like to think that we're a reasonable place to work you know nice environment and all of that so there are issues about recruitment for sure in terms of the harms that might come I would like to think that on receipt of a referral from a general practitioner for instance if it was clear that the patient needed to be seen urgently we would push the boat out to see them urgently and often that means phoning them up saying could you come up at eight o'clock and we'll see you before the clinic starts however you know our routine waiting list I saw our waiting list for urgent outpatient appointments we should see people within 10 working days it's more like three or four weeks and the target for seeing routine outpatients is 12 weeks and for us it's it's near 18 just now and I think it's the same in most places now there is a question as to what harm comes to patients while they're on the waiting list and I'm not sure that is a great deal of if you like biological or medical harm but there's lots of anxieties associated with waiting for someone to tell you either this isn't something to worry about or that you've got a scan everything's all right or yes we need to do this for people who have conditions where their primary care physician has advised them not to drive until they get neurological opinion you know warning strokes or epilepsy or the or possible epilepsy or the like then they're not driving for that period until they there's one of the most frustrating things when someone sees you after five weeks and you say actually you never needed to stop driving you could you could but takes a while to get there now the issues with recruitment I think are multitudinous but remember that across the healthcare service real-term salaries have fallen by about 15 to 20 percent these last seven years so it's a less attractive proposition I know of junior doctors who are leaving to work in finance to work in consulting to work in other places because they don't see it as being a career for someone like them they could earn more doing something that was perhaps almost as enjoyable doing something else I think we've got particular issues in Scotland relating both to our ability to recruit from overseas now with with concerns about what happened what might happen with Brexit I'm not aware of any major differences although I suspect the situation is probably slightly worse in Scotland than it is in England nobody really likes to speak about this very much but I think undoubtedly the the difference in higher awards what used to be called merit awards in Scotland compared with England we were trying to work this out but I guess that the lifetime prevalence of a higher award for a neurologist in England is about 30 or 40 percent so leaving neurology training and looking to where you will choose to have a consultant job if you elect to work in England then your chance that by the by the time you retire you'll have a higher awards about 30 or 40 percent in Scotland that chance is zero and I think that impacts on our ability to recruit and I think for a whole variety of reasons we need to do everything we can to maximum I'd like to have five applicants for every job so I could choose the very best and just now I'll take anyone who'll apply and make it through to interview and I don't think that's good for patients with neurological diseases in Scotland I think that the the level of anxiety that people have I think particularly around if they're presenting neurological symptoms is very very high because a lot of these conditions are very serious fortunately most people who present don't have those but the worry is really profound what the thing that I also wanted to highlight was the measures that health boards are taking to deal with the recruitment crisis are sometimes unhelpful so we're using local neurologists coming in who don't know the local systems means that people are getting a diagnosis and being chucked back into primary care without being referred into the services which do exist to support them if they've got multiple sclerosis or Parkinson's or or whatever so they are struggling without the information that they need to manifest their service or their symptoms well and they're just not getting the information that they need so that is a that is an additional problem as health boards try and respond you kind of touched on the pop the well sometimes people are being put back into or put into primary care without appropriate information following them is there a possibility that greater multidisciplinary working in primary care could improve support for people with neurological conditions to answer your questions and yes I would agree with you because you know as and I'll touch on the recruitment aspect but yes and also better communication between health and social care that's really the whole the knitting of health and social care getting more mature and much more efficient will make a huge difference at lucky we are a nurse led and physio led so you know I can only talk about actually nursing aspects however it's no surprise that there's a national shortage of nurses and it's going to get worse so that's not an easy thing to do but it's also the care assistance aside of things because it's a lot easier to work in little or Tesco for you know for not much difference in in salary with a heck of a lot less responsibility and triple SC have also just put on quite a lot of learning and development which is absolutely fine but we I think a lot of care providers are now thinking actually it's gone too much the other way because people might want to spend life and care they don't necessarily want to have an svq for in in management to be a care assistant so we need to get a fine balance there because that is putting people off as well because some people embrace it learning and want to do it some people don't but it doesn't mean that they're not a good care assistant you know so we we need to get a fine balance on that and the nurse as far as an RN is concerned we're rural as well which doesn't you know help however there's ways of skinning a cat and you know we've upgraded our senior care assistants to take on more responsibility so the actual train staff will do what you know they are trained to do and so there's different ways of doing it however that is not a nice thing the other thing is there's a huge aspect of agency nursing being used now now agency nurses are being paid really well they can pick and choose what days they want to work and they will earn just as much as they would in a substantive post with very little responsibility and you know it's not just nursing i'm talking about locum vets and pharmacists as well so it this is a culture that's coming in that we've allowed to come in because we're not we're not funding these positions as they should be so it's not just in it's not just nurses and doctors we're talking about a whole the whole spectrum but the agency aspect and the locum aspect is something that is extremely worrying for me just to ask your indulgence just to go back to malcom's point about the data on quarriers that that data about the cost effectiveness isn't a public domain and has been peer reviewed so thanks very much for that malcom thanks for the opportunity for me to bring that up again that's fabulous i think the recruitment issues and workforce issues are important of course at the other end of the the journey we have our retention problem and we have a difficulty with disillusioned overworked hard pressed senior members of staff not just medical but nursing as well and unless we do something imaginative and something reasonable to make sure that the working experience is reasonable we will struggle to retain them beyond their mid fifties and that's a big issue i would very much echo tannas tannas point about the use of short term locums the use of agencies bringing consultants in for a weekend to see patients at 20 minute intervals you know 10 14 20 patients a day this is not a way to deal with a condition such as epilepsy a Parkinson's or ms which is going to be a lifelong condition to give them a label and send them packing back to the gp it's expensive and it's not useful weekly please malcom yes so i detest the the bringing in activity from outside i think it's driven by a by a desire for boards to meet their waiting time targets but it's very disruptive we had had people coming in doing clinics over the weekend and we audited what happened and the rate at which they requested investigation was much higher than our in-house neurologists the rate of complaints was much higher the rate of return appointments made was much lower and the chaos that ensued was much much much higher and it would have been quicker if i'd seen those hundred patients than it was trying to clear up the mess afterwards it's very disruptive i want to come back to a point that you made about closer working with with into primary care some years ago i for about a year or so did neurology clinics in primary care practices around the fourth valley pack so out in calendar and sake in places like that and while it was great fun i don't think there was any great added value for the patient for them being seen by a consultant neurologist in a different environment so i don't think that diagnostic interaction is something that we need to think about pushing out into the community but i think the other parts of what we do particularly around care and specialist nurses could could very reasonably be pushed further out into the primary care thank you very much i thank you convener and good morning panel thanks for coming along with very interesting so far i want to go back in touch on some of the questioning and follow-up some of the questioning that ash denham was making around about the economics of this and the cost benefit analysis and it's a look very much look forward to seeing the work you've got from the new economics foundation and i take professor mclow's point on board i've spent a lifetime not believing being cynical about purported benefits if you spend some here you'll get some there but the reality is and we've heard that many examples this morning very concrete ones we've just heard when they're talking about about consultants if you do things better and spend money in the right place you will make make a difference so i suppose i just want to explore that a wee bit further first round about what mechanisms are in place allows to analyse that and i think the answer is probably not very much and it seems very very ad hoc which is bad but it's also good because it means there's a lot of opportunity there and secondly what changes to structures would have to be made and i think we've touched on this as well with the savings not following the patient but what changes in the way we measure and track money and the decision making process is there so the person that's making the decision about investment is the part of the organisation that's also getting the benefit from the saving and is able to to reinvest so maybe you just want to explore around about those areas and it gives your thoughts on ways forward. Yeah thanks John Paul. So the problem with inter-board transfers so there's probably four boards that have inpatient neurology services and the rest avail themselves of those services as and when they need them and the cost for transfers between boards are i think reconciled according to something called blue book agreements which is at the end of you know three years later people tally up who moved in which direction who moved in which direction across all of their services across the cross boundary flows and then work out an overall number and say well Lothian Ode's fourth valley X or fourth valley Ode's Lothian X and it's almost impossible to unpick. Now i mean i've struggled with this over the years but the one of the great benefits of having a socialised healthcare system is that you don't have to count every penny in every bit to generate a bill at the end of the day that goes to a patient and that's that there's a substantial cost saving in that which we see in the different cost of administration of healthcare with us compared with the US for instance. The downside of it is that you don't have access to that information to manage your services adequately. Now it should not be above the beyond the width of man for us to be able to avail ourselves of new information technologies and the like to be able to capture things in much finer detail much finer grain to know what's happening where to try and allow those funds then to follow but my experience of NHS finance is that it is a big massive thing that nobody really understands the big picture of and trying to get money to flow from one bit of it to another is incredibly complex and so either you bite the bullet and say we're going to understand every penny that flows on what it was spent on or you're going to say actually you guys we kind of trust you to do just about the right thing but we'd like you to do a bit more of this which is which is how it works or doesn't work just now. But are there not i mean that specific examples we've had from you talked about pressure sensors and things like that and that does deliver savings further down the line those things are very small but can obviously not all add up and it'll be interesting to see the detail behind the new economic foundation stuff because that'll be the same there'll be examples in the whereas if you do that you save that and at a micro level are there not a lot of those small dots that can be joined that make things easier to- The saving never goes into the budget from which the expenditure was made and so you save a bit of money here by spending a bit of money here so you end up spending more and there's no way of matching that even if that savings identifiable so if I've got a great neurology service that means that there are five or 10% fewer attendances at my emergency department from my patients with epilepsy that's money that's not spent but it's not a it's not it's not in someone's briefcase that they can deliver to my neurology service so I can employ another epilepsy specialist nurse because it's expenditure foregone and so that's the difficulty with trying to trying to attribute savings to allow expenditure which is which is what we all would like to be able to do we took a bit of a stab trying to kind of just demonstrate this because her isn't the data available and there isn't kind of you can't say if you do this you will get that and you know where that resources are allocated is hugely complex so that is the difficulty that in we had this kind of I suppose naive hope that with health and social care integration that pooled budgets might help some of this resource allocation but and that might come you know and that could come and that could be very helpful but we're you know we're a long way off that but I think the detail behind these stories will be very interesting reading in terms of some of the interventions that have clearly provided cost savings and I think we we wanted to be able to demonstrate that particularly to commissioners so that we can see you could think about things in a different way. Is the Government engaged in that at all? No we've commissioned this piece of work ourselves. So you're not aware of them doing anything in that area? I'm not aware of it no I might but unless anybody else can tell me otherwise no. Okay okay thank you very much. Just a very brief supplementary I have a particular interest around the preventative agenda in this you've alluded to this idea of how do we allocate money that we didn't spend sort of idea and I would just like to ask the question is from your perspective is there a way in which we should be looking at that that sort of preventative agenda a way in which we should be taking the money that we don't spend and allocating it somewhere. So I think when you work out how much money so I said the savings that you make because someone didn't attend A&E but but try and break that down what that is so so there are some opportunity costs of that A&E attendance because someone's had to use a syringe to draw some blood and they've sent it away to the lab and there's some costs that would be incurred anyway because you've got to be seen by a doctor for half an hour but if you don't turn up the doctor's not being paid for they're doing something else so when we say well these are the costs that are saved that would be if then we could change the way that A&E's run so the A&E didn't incur those costs and I think there's an issue there about the about the linkage between being able to reduce reliance on for instance A&E departments and therefore how well they have to be staffed and actually that leading to savings because me reducing the number of people attending A&E with epilepsy isn't going to make A&E's bills go down by very much so those costs aren't going to aren't going to change very much at all so I think trying to get into the into the detail of where those savings are and what they might be is really difficult collecting more information might be helpful but I'm not altogether confident of that. One of the unique things that when guests come to lookie we've got the opportunity to do 24-hour assessment which is not just five or ten minutes in a GP surgery or a social worker visiting your house so from that we're able to ascertain a lot more detail a lot more information and liaise back to the community teams now sometimes they don't want to listen to this information because it now means that a guest needs hoisted in the evening whilst in the morning they can do transfer because they're more fit and whatever and it's going to be double handling as far as the local authorities concerned which means two people going in at night not just one person going in at night so there is a lot of aspects of that that we're struggling to actually get local authorities to understand because if not our guests tell us they just pull a pillow off the bed and they sleep on the floor because they can't get themselves into bed in the evening so we can be that advocacy for our you know the amount of people that come to lookie the 6,500 dressbite days we can be that advocacy because we've got 24 hour assessment but we do have struggles also with wheelchair assessments and wheelchair roho cushions and various and even you know pressure mapping or stand aids or all the stuff that we do there's a resistance to listening to what we what we'd like to tell people you know on that just picking up your point about the preventative agenda i think i think we're going to have to do some small tests of change really in order to realise the benefits i think you know and we need to be able to demonstrate that i think we mentioned earlier on the panel about small pockets of money becoming available to do innovative things so for instance the self management fund that we self management programme that we are doing for three years out of our the view service it's short it's short funded we've got three years funding we're doing a full evaluation last service so that we can demonstrate benefit in terms of outcomes for people and also outcome you know financial benefits as well but we need to get people to be receptive to what we're trying to demonstrate and therein lies the problem is that you can demonstrate this but once the money is gone the money is gone and you know unless it goes into a commissioning strategy where people are saying actually that looks like a really good holistic pathway and we're going to invest some money at that level nothing will change thank you very much final lady of questioning thank you convener can i get and also thank the panel for their excellent evidence to date we've touched on carers briefly in the evidence so far but can i ask very specifically about carers what assessment have the panel made of the new carers act 2016 which actually comes into force on Easter Sunday i don't think it was any religious significant about that but could ask specifically how is that going to help people with neurological conditions we welcomed it we were part of the consultation process we really um we look after carers we try to look after carers just as much as we look after our guests we call it our keep well keep caring campaign and the standards are are very good but again there is not so much evidence that i see just now i'm not quite sure but there is not the evidence that i see of the resource behind it and again for local authorities it's it's another aspect to adapt and i think that must be quite a strain for some of the local authority budgets i absolutely agree with that my assessment of people who care for people with neurological conditions is the support for those carers is quite neglected and i think in some cases it's about insidious need that develops over over a very gradual period for people which means that you don't get a tipping point to identify when care is needed so one of the key things in the carers act is going to be having proper carers identification strategies however that needs to be properly resourced so that once you've identified that somebody has caring caring needs and needs support that that support can be provided and it has to be said that i would be concerned that there isn't enough resource in the actual implementation of the act itself but also in the wider community resources which are essential to providing that support because we know that carers projects and things like that are amongst the areas that are at risk of having their funding cut by local authorities that are strapped for cash and obviously yeah my needs have been identified and yet there is no support to meet those needs i think that's a very real risk as we as we move forward so the intention is great we just need to see it realised important aspect i certainly support in the new act is is the young carer statement which identifies their needs and how that needs are going to be funded and think that amplifies your earlier point how important is that i think young carers are playing a massive role in supporting people with lots and lots of neurological neurological conditions across the board because clearly you know there are a number of conditions that affect people of childbearing and childrearing age and clearly those those children are under a great deal of stress currently but i would also make the argument that in general neurological services are less good at providing that family and holistic support than some other areas of their health service i'd i'd say that oncology is probably much better identifying those family needs picking those up and moving forward and perhaps neurological services have been a little bit more atomised and focused on acute need historically and diagnosis and maybe haven't been able to provide that family support so there's real opportunity here for carers of all ages i think to be to have their lives improved as long as the carers act is properly resourced we're delivering to over 500 people in the community around Scotland and one of the things that we have been seeing is the struggle that you know young carers and also people of all ages really older carers as well it is a huge issue and in fact in the last year we've had to actually flag up safeguarding issues and for particularly young vulnerable adults who are supporting and we've never really had to do that before but we've felt there's been significant risk to that young person so i welcome you know welcome it but as everyone else has said the resourcing of it is what's going to make it happen when we were funded by the ms society we had a fortnight every year where families could come the person with the ms their partner and the children and the partner could well be living in a nursing home just now you know already and they never had the opportunity to have a family holiday and to actually and to see how these young children interacted together and how they worked together and how they supported each other and still are even though they don't visit us anymore but it really highlighted as you worked with them each year the problems that arose there was a different problem from when they were under 10 to when they were 14 16 17 and i think that tracking is something that's also not happening you know it just because they're 16 doesn't mean that they're not actually having more issues actually as they're growing older so just very briefly i think i think the key part of this is to turn this point to the people that carers function really very well for a while but but then gradually things get worse and worse and worse and often you get to the stage where people have to go away for the weekend to induce a crisis to to get the professional care services involved and i think if there was one thing that you could fix it would be anticipatory support for individuals and for their carers so that things were put in place immediately before they were needed not two weeks after they were needed and that would make a huge difference to the lives of people with neurological conditions another important aspect of the bill or the act i should say is to involve carers in the discharge from hospital care what do the panel feel about that aspect of the act well it doesn't always happen now so it's got to be a real a real move forward to get away from being discharged from acute hospital in the middle of the night to arrive back at home today okay well how did this happen yeah so i think that that that is a real strength as long as it properly happens because at the end of the day if people need out of a bed they're going to be hoaked out of a bed almost regardless of what the cares act says so perhaps my acute medical colleagues could give a perspective on how likely that is so the reason that patients are discharged at three o'clock in the morning is because there's an emergency at the front door that needs a bed and the hospital doesn't have enough beds that's the reason it happens and so the solution is pretty straightforward i think that's a formalisation of what we would consider best practice which is that the carers and the family are involved but i think for the reasons highlighted that doesn't always happen thank you very much and can i thank our witnesses for a very full and informative session much appreciated and we will follow up on that in due course thank you very much we will now take a break until 1145 when we will go into private session