Appendix Two; Developing Intelligent Targets for Stroke- responses Responses to Stroke IT Paper Content Comment/Consideration Possible Actions Are these the most appropriate three aspects? Not necessarily-community support and interventions are often more meaningful and effective Consider developing driver diagram for community services Will improving the reliability (reducing the variability) in care by improving compliance rates with the drivers improve the quality of stroke care? Possible mismatch between these targets and the audit criteria in the Sentinel audit (such as 90% of the inpatient stay being on a stroke unit). Perhaps it is worth flagging this up with Tony Rudd? It is possible to calculate the % of people who spend more than 90% of their time on a stroke unit from the data collected. If it is felt this an appropriate outcome for every stroke patient it can be included. Only if the interventions are delivered by stroke competent staff. The document needs to be more detailed with greater reference to RCP guidelines to demonstrate compliance and needs of services If there are specific evidence based competencies for each discipline these could be included in the “How to Guide” Are there any other specific outcome measures or targets that might be more appropriate? What functional outcome measure? E.g. the barthel score would not pick up higher executive problems Is it appropriate to designate a functional outcome measure that must be used across Wales and if so which one should this be decided locally. Should this be discussed/agreed at the first learning session Is it appropriate to concentrate on three aspects of the whole care pathway in the first instance? For transfer of care measures: Follow up services referred for and patient has information on ongoing goals and services they have been referred to Apart from the functional measure all other measures are organisational not patient outcome measures looking at quality of life Mood of patient and carer as an outcome measure Page 1 of 14 Is there one appropriate Quality of Life or Mood measure to be used across Wales. At what point should this be administered- at week one/ four/six? This can go in the “How to Guide” Appendix Two; Developing Intelligent Targets for Stroke- responses There are challenges in using these to make comparisons between services, and the difficulties caused by incomplete data. The targets (probably rightly in the first instance) allow for significant variation in interpretation in implementation, which again will limit the validity of any comparative analysis. I am sure this situation will improve as the targets are developed and refined over time. Using the data to look at capability as well as compliance rates would help this- needs further discussion How will the information derived from the targets be used in service development / planning - can we build on the limited success of audit and feedback of performance more generally. Must ensure that implementation of the targets is accompanied by evaluation to inform target development. As per AWSSIC. Local teams have control of the data as they collect it and can use it to inform service developments When it comes to measuring the overall effect of the development of the service is it worth mentioning that those patients who are subsequently diagnosed with something else will have benefited from the new sense of urgency which attends Stroke; they may have just as much or more to gain from the stroke initiatives because they will be diagnosed as having their migraine/subdural/abscess/tumour/MS/epilepsy, much quicker than in the past. From the perspective of the hospitals and the trusts this is a win-win situation, once the system is up and running. Put another way, in the slip stream of developing services for stroke patients lots of other patients with acute neurological deficits related to all sorts of disease will benefit. As Prof Richards says the system will have to be able to cope with all those who have had a transient event which could have been ischaemic, if it is going to have a beneficial effect. Suddenly we will have to find a new confidence about diagnosing something as not a TIA or Stroke, as well as finding the confidence to make these diagnoses! Would not be an intelligent target for stroke, but very valuable information. How could we capture this information? Need to clarify outcome measures. Outcome measures differ in the progress report the third measure states one of the outcomes is % of patients who receive a specialist assessment within the time frame. Where as in the driver diagram in states % of patients reviewed in secondary care. Also need clarification of what is a specialist assessment. Need to ensure that local outcomes cover the cognitive and emotional needs of the patient and carers. Need to ensure there are quality of life indicators used that will evaluate participation and employment based on RCP guidance if patient able to tolerate and delivered by stroke competent personnel Page 2 of 14 Should the outcome be: Appendix Two; Developing Intelligent Targets for Stroke- responses How will percentage of people who present with a mini or transient stroke be determined? In other words, how will the denominator be defined? Are we concerned about people who have developed a stroke who did have a previous funny turn? Some will not have recognised its significance: a measure of public education. Some may have presented that funny turn to A&E, the GP, NHS Direct or the Out of Hours Service who did not recognise it: a measure of diagnostic suspicion or management in that setting. Some may have presented and been referred appropriately but the pathway did not work: a measure of the system’s performance. Are we concerned about those people who have been referred and for whom the diagnosis of mini-stroke has been made? That will miss those in whom the diagnosis was missed and those not referred for assessment. From the GP perspective the denominator of concern is ‘those suspected of having had a transient event’. It is these people who all need to proceed through the pathway, even if the final diagnosis is not TIA whether or not they develop a Stroke. If the pathways are successful we will see fewer people go on to develop a stroke, but that doesn’t mean that the numbers presenting with symptoms and needing the systems in place will go down. Indeed, if the public education campaigns are successful, the NHS will see more referrals for assessment and, if the systems are working, fewer strokes. % of patients who receive specialist assessment and/or % of patients reviewed in secondary care Should this be: % of people who are suspected of having Mini/transient stroke Ideas? Will improving compliance with any one of these drivers have a negative impact on services delivered in other parts of the patient’s pathway? Improving on referral to action times by professions could increase caseloads and lead to less interventions and poorer patient outcomes. This may be the case, but at least the data would be available to back this up. Will improving the reliability of the interventions in the bundles have a positive impact on outcome following The first three hours is the accepted therapeutic window of opportunity for thrombolysis and to be able to deliver it we need the patient to get to a hospital with a CT scanner (which may or may not include a prior primary care consultation), be subjected to some sort of further triage (in addition to that which will have happened in the primary care consult and/or in the ambulance), have a CT scan (which needs interpreting), and then be Either: Page 3 of 14 Move CT into 3 hour bundle, however this does not reflect the current RCP guidelines, and most trusts are not meeting the 24 hour bundle. Appendix Two; Developing Intelligent Targets for Stroke- responses stroke? reviewed again by a clinician who is competent to make a decision about whether or not on the basis of the story, the signs and the scan the diagnosis of an ischaemic vascular event in the head can be made, and thrombolysis given. This new treatment of thrombolysis (which causes bleeding in about 5% of patients) has produced this diagnostic urgency, and has changed stroke from a Cinderella to a Rambo specialty, overnight As an Emergency Medicine physician it is my view that the first hour bundles should include an urgent CT scan (I would be advised of the timing 3-4 hours by my specialist colleagues) - especially when we are considering interventions such as thrombolysis. Access to a stroke bed inside the Four hour target must be in the bundle too. Therefore should the 3 hour bundle include the ambulance journey to a hospital, the triage, the CT scan, and the final diagnosis? Clinicians will not be able to make the diagnosis of an ischaemic stroke without a CT scan, and if a CT is readily available most would probably hold off giving an aspirin until a bleed (or other ischaemic stroke mimics) has been excluded. I think the first day bundle is not ambitious enough and any concerns about emergency treatment should be linked to the first three hours. Would it be more relevant to have three bundles i.e. first 3 hours, first 3 days and first 7 days. After the first three hours the opportunity for intervention at a biological level decrease dramatically. For every 100 stroke patients given aspirin, one will be saved from death or a recurrent stroke (First International Stroke Trial, Lancet 1997). The accepted figure for Thrombolysis is that for every ten treated one will be saved from death or disability; with better patient selection using more refined imaging techniques (and possibly by excluding patients with extensive small vessel disease) this figure will only get better. This intervention has an effect which is an order of magnitude different and deserves being centre stage in the Intelligent Targets. Put another way the term “Emergency Treatment” belongs in the first three hours, more than in the first 24 hours. Is there any chance of replacing the term “Swallow Screen” with “Assessment of ability to eat and drink” or “Eating and Drinking Assessment”? This is only to broaden the debate about the mechanisms and management of people who are not able to feed by mouth; for many their swallowing is relatively preserved but it is their cough, respiratory function, Page 4 of 14 Monitor the time to CT data and move to 3hr bundle once it is actually achievable with the service configuration and resources in place. Appendix Two; Developing Intelligent Targets for Stroke- responses conscious level, and other neurological deficits (e.g. posture, limb function, vertigo) that make oral feeding so difficult, or hazardous, or both. Assessment of ability to eat and drink, or feed could require full specialist SALT, physio and OT assessments for some patients. Is this feasible within the 24hr time frame in A&E? The reasoning behind swallow screen is that it would ensure patient safety immediately and trigger more specialist assessment. For quick wins on improving RCP audit scores could we align the content of one or some of these bundles with the RCP boxes (weekly weight and mood assessment come to mind as easy wins)? As discussed in the core group meetings, it would be difficult to add additional interventions to the acute bundles at this point. Local teams could agree that weight and mood assessments were required for proper MDT goal planning to be complied with. Under intervention in the first 24 hours, I wonder if it should be made explicit in that section that a referral should be made to SLT if the swallow screen identifies that swallow safety is compromised. SLT assessment of speech, language and communication needs to be in this diagram. need to add in cognitive screening psychological support for patient and family advice on driving and employment See point above. This should be done before compliance with MDT goal planning is done. If some professions are included eg physio and OT, all professions should be mentioned or there is the potential for this document to be interpreted that other professions are not required The MDT assessments required to fulfil MDT goal planning are decided locally and these should certainly be included. Professions involved should be stroke specialist with relevant competencies, as per RCP guidelines, this needs to be highlighted in the bundles of care. It is difficult to change the acute bundles at this point as data is already being collected across Wales. The reason for including OT and physio originally was because these were specific questions in the last RCP audit. It was decided not to put any specific professions in the TIA and Rehab bundles for this reason. From RCP Guidelines Edition 3 A specialist is defined as a healthcare professional with the necessary knowledge and skills in managing people with the problem concerned, usually evidenced by having a relevant Page 5 of 14 Appendix Two; Developing Intelligent Targets for Stroke- responses further qualification and keeping up-to-date through continuing professional development.It will usually also require good knowledge of stroke, especially in acute care settings. It does not require the person exclusively to see people with stroke, but does require them to have specific knowledge and experience of stroke. i A specialist team or service is defined as a group of specialists who work together regularly managing people with a particular group of problems (for these guidelines stroke) and who between them have the knowledge and skills to assess and resolve the majority of problems. At a minimum any specialist unit (team, service) must be able to fulfil all the relevant recommendations made in this guideline. As above, the team does not have to manage stroke exclusively, but the team should have specific experience of and knowledge about people with stroke. If these competencies and methods of assessing them are evidenced based and available they would be included in the How to Guide. If they are under development, they could be included as they become available. Need to state on diagram physio within 48 hours(could be interpreted as 3days) and OT within 4 days (could be interpreted as 7 days) if this is not on there, it is a high risk that the longer time frame will be used and slippage will occur Do the guidelines state within 4 days of admission or onset and is this working days? From RCP Guidelines: All patients with any impairment at 24 hours should receive a full multidisciplinary assessment using an agreed procedure or protocol within five working days, and this should be documented in the notes. We are saying 7 days form stroke, not 5 working days from admission. Page 6 of 14 Appendix Two; Developing Intelligent Targets for Stroke- responses Appropriate cognitive assessment is also relevant to the ‘patient-centred and goal-orientated specialist care’ – from my experience staff fail to understand what a score on a screening assessment indicates for the patient in terms of behaviour/functioning. Thus the goals are set unrealistically (due to poor understanding of executive impairments) and frequently fail leading to patient low mood! (I am often explaining this to even the highly skilled and experienced staff on our rehab unit). As with other interventions there will be competency and training issues around this. Are there any evidence based competencies or standards already in place? Relying on OTs to do an adequate cognitive screening and provide appropriate advice/information at the Acute is going to be very variable and without access to advice/support/ further assessment from psychology/neuropsychology this will remain a major concern for some patients (particularly the younger patients and/or those wishing to return to work). See above Occasionally medical staff will do the Mini-Mental State Examination. But this screening tool misses the nature of ‘executive’ cognitive impairment (i.e. the walkers and talkers who go home and develop the significant psychosocial problems!). I recently saw a patient medical colleagues said had depression not a CVA (as CT was normal). Neuropsychological assessment indicated that the patient appeared to have had an organic event, physician agreed to do an MRI – this highlighted rare type of CVA. Without the neuropsychological assessment patient would have been discharged home with major cognitive problems and a young family! My aim has been to train the clinical nurse specialists/OTs (or anyone else appropriate!) to use and understand the Addenbrooks Cognitive Examination Screen (ACE-R) …BUT I have been surprised to find how difficult this had been. They need considerable supervision to do this correctly and need to have ongoing support. Otherwise – from my experience they do not have the skills, knowledge or confidence to understand the information that they are collecting – and to explain to the person and their family how the specific cognitive difficulties could impact on functioning once they are at home. ‘information sharing with patients and carers’ – research shows early on most questions asked by the family are medical but over time it is the cognitive/personality/emotional changes that families want to ask about. Research shows problems in these areas have a greater impact on long-term outcome than coping with significant physical disability. From my experience Page 7 of 14 Appendix Two; Developing Intelligent Targets for Stroke- responses ‘general information’ about stroke is not enough for many individuals and their family experiencing these cognitive/personality problems …… in these cases they need specialist, specific information about the nature of their stroke and cognitive impairments. The advice on coping strategies needs to be tailored to their individual cognitive strengths and weaknesses, and put in the context of their own environment. “give patient information in relevant format”- what information? need to state recommended levels and competencies as per RCP guidance What are these? Is it possible to improve reliability of the interventions and compliance with the care bundles within allocated resources in the next 18 months? limited improvement in acute care in some settings- resources allocated are far below what is necessary to meet the need in acute- many areas have no dedicated stroke professions at all at present. Monies allocated were to upgrade services- this is only feasible if you have a service to upgrade and are not starting from a blank sheet. The target would be to improve compliance year on year, not achieve 100% Will improving the reliability of the interventions in the bundles have a positive impact on outcome following stroke? The pathways for TIA, mini-stroke and late presentation do not focus enough on general practice. I cannot think of a symptom complex that could be better dealt with in primary care. Most of the work is low tech and only requires support with what would be considered to be simple investigations these days. There are issues of access (to imaging and also rapid community rehabilitation) and education particularly focusing on best choice of and most appropriate imaging. The other issue highlighted, quite rightly, is seamlessness. From a DGH point of view, the imaging cannot be delivered within current resources (equipment or staff). As regards complex imaging for thrombolysis (which I believe is essential for a safe, effective practice) it cannot be delivered within current skills, either. However desirable the stated outcome may be, we cannot keep accepting 'targets' without the necessary resources. Continual pressure to get a quart out of a pint pot is dangerous to the health of staff as well as patients. What the Primary Care team needs is a timely assessment and in my view that includes the specialist’s skill as well as the CT and Carotid Doppler assessment. General Practice can certainly deliver everything else, provided Page 8 of 14 Is it appropriate to specify the model of care in which TIA patients are first seen ie must see GP before going on to more specialist assessment maintain what should happen at first contact and allow the models to develop in each locality based on local issues/needs and data collected through IT Appendix Two; Developing Intelligent Targets for Stroke- responses we can access timely rehabilitation if needed. Should the document also specify opticians and ophthalmologists in the first point of contact section? I have seen delays in diagnosis because amaurosis fugax was not acted upon speedily. there is a role for specialist care in the specific areas you describe but the reality is that a lot of this care is already undertaken (and well) in general practice. Recognising a TIA in primary care should not be difficult any more than it is secondary care. Important, however, to: 1. Start treatment ASAP 2. Refer for a specialist assessment which should be within 24 hours for high risk and 7 days for low risk patients. A lot of work can be done in primary care, but only after appropriate training. Arriving at correct diagnosis is the key issue. We need to look at all possible models of care and be pragmatic. Primary Care has a key role to play in the management of both acute strokes and TIAs. It is, however, important to recognize that the diagnosis of strokes and TIAs is difficult without specialist training and appropriate investigations. I do not feel that investigation of TIAs should be primary care based. The role of primary care should be to identify suspected strokes/TIAs and refer them for urgent specialist assessment in appropriate situations (i.e high risk TIAs, strokes suitable for thrombolysis etc). The diagnosis of TIA in any setting is not easy. My own experience is that many of TIA patients referred to my stroke prevention clinic from both primary and secondary care do not actually have had a TIA. The other important thing is the ability to recognize the underlying pathophysiology of TIA. Without specialist training, doctors in primary and secondary care are unlikely to be able to confidently achieve both these goals. This is the point I am trying to make: specialist assessment is absolutely essential because it determines course of further management, which is crucial from prognostic point of view. The nature of the symptoms that cerebrovascular disease produces (negative Page 9 of 14 Appendix Two; Developing Intelligent Targets for Stroke- responses i.e. loss of function rather than a seizure or an abnormal movement, no pain, preservation of conscious level (at least initially), difficult to interpret, easily passed off as something else) militates against people seeking help urgently and I think most will be seen in primary care first, particularly the TIA and the stroke that has improved or was passed off as a sprain or “I must have slept on it”. Therefore I think it is important for thinking and planning to start with the primary care perspective. the National Clinical Guidelines and NICE guidance are clear about the need and timeframes for specialist assessment of TIAs. The challenges are: the speed with which patients with TIA can be seen promptly within primary care (and public awareness is a key factor here), and the lack of clarity about what constitutes 'specialist' within the guidance (other than the ability to exclude stroke mimics). The impression I have from the centres I link with is that the trend is for high risk TIAs to be admitted to acute stroke units (or at least seen within them) to ensure compliance with NICE. Agree urgent specialist assessment especially for high risk TIA is important but there is no harm, I think, in starting treatment by any body who the patients presents to as long as definition of TIA is strictly adhered to. Most non TIAs are collapses of some sort which need assessment in their own right and who better than a geriatrician to provide theta assessment! Perhaps we should collect info on patients referred as TIAs. It would be too easy to have a debate over territory when the real challenge is seamless and evidence-based care focussed on the patient. I look forward to getting it right. The nature of the symptoms that cerebrovascular disease produces (negative i.e. loss of function rather than a seizure or an abnormal movement, no pain, preservation of conscious level (at least initially), difficult to interpret, easily passed off as something else) militates against people seeking help urgently and I think most will be seen in primary care first, particularly the TIA and the stroke that has improved or was passed off as a sprain or “I must have slept on it”. Therefore I think it is important for thinking and planning to start with the primary care perspective. There may need to be some clarity as to what is deemed an appropriate format that for giving information Page 10 of 14 Appendix Two; Developing Intelligent Targets for Stroke- responses Strategy reinforced by AHP. Who & How? Is it possible to improve reliability of the interventions and compliance with the care bundles within allocated resources in the next 18 months? Regarding the question about whether or not it can all be done from within existing resources I think the bottom line for acute stroke is whether job plans can be changed to allow diagnosticians with experience in acute medicine to drop what they are doing and see someone immediately, whether job plans for radiographers can be modified to allow immediate scanning, and whether Radiology opinions can be obtained from within existing radiology services. Do the data points capture all the information needed to assess compliance with the bundles? Will improving the reliability of the interventions in the bundles have a positive impact on outcome following stroke? Only if the interventions are delivered by stroke competent staff and sufficient treatment sessions are available The document needs to be more detailed with greater reference to RCP guidelines to demonstrate compliance and needs of services Appropriate intensity of rehab. - deemed by who? “Intensity of rehab”- RCP guidelines suggest up to 45 mins daily per therapy profession if patient is able to tolerate (this needs to be highlighted on the diagram as a guide) The rehab part of the diagram is vague in terms of how it is decided what is the most appropriate setting for rehab and how appropriate intensity of therapy is calculated. The appropriate intensity of therapy would be decided by the team treating the patient, based on their assessments. The MDT team would need to agree what sessions a patient needed and what level of specialism would be needed to deliver them. This would be marked as achieved or not achieved the following week. As in the AWSSIC at the moment, if there was a valid clinical reason that this intensity not delivered, ie patient not able to tolerate or was unwell, this would still count as achieved. If not achieved because of acts of commission- not enough staff/ equipment or omission- someone forgot/ wasn’t told then this would not be achieved. Which ones should be used- is there agreement across Wales? This can be put in the How to Guide Page 11 of 14 Appendix Two; Developing Intelligent Targets for Stroke- responses Assessment tools and outcome measures should include patient centred tools/outcomes to measure the patients’ functional recovery both in the hospital and in the community, mood, cognition and family/carer needs. Transfer of care should ensure that all patients are immediately provided with the prescribed care package by the receiving team to prevent a “stop/start” patient care pathway Options appraisal – few options are available in many areas so this is good to have in but unsure how this relates to the outcome measures chosen? Unclear what 'Options appraisal of rehab or discharge settings completed and agreed with patient/carers done' means… Is it possible to improve reliability of the interventions and compliance with the care bundles within allocated resources in the next 18 months? Not within existing resources Do the data points capture all the information needed to assess compliance with the bundles? Do goals have to be SMART? What the aspirational goals of patients that keeps them motivated.(We all have these in life). These time scales are often organisational led not patient led. Page 12 of 14 Can one competent clinician prescribe what another one can do? E.g. can a specialist therapist working in acute stroke unit say what treatment/ how often should be carried out by a specialist therapist in a rehab stroke unit or ESD service. Patients/carers should have an opportunity to decide where they want their rehab, based on availability of services/ therapy. They should be able to choose not to go to a rehab unit, but go home, as long as they understand they will not have the intensity or specialism of therapy and the impact that might have From RCP Guidelines; Every patient involved in the rehabilitation process should have goals that: are meaningful and relevant to the patient are challenging but achievable include both short-term (days/weeks) and longterm (weeks/months) targets include both single clinicians and also the whole team are documented, with specified, time-bound measurable outcomes have achievement evaluated using goal attainment Appendix Two; Developing Intelligent Targets for Stroke- responses Wow factor I(WAG) am extremely keen for one of the key principles to be addressed in this work i.e. that we are looking for key interventions / 'wow factors' across the whole pathway (from primary care to rehabilitation). include family members where appropriate are used to guide and inform therapy and treatment. Do the driver diagrams have the wow factor? If we do not address this issue we are in danger of missing a great opportunity as one of the success criteria of the intelligent targets work will be the ability / or not to show how we have changed the system. Thus, if the current system of stroke care is felt to be too secondary focussed, what has changed with the introduction of the intelligent targets (e.g. what are the key interventions / measures that could have been taken in primary care to prevent the stroke occurring?). This is particularly relevant in the context of the NHS reform programme, where one of the key objectives is better integration between primary and secondary care. Stroke and TIA or transient stroke Stroke patients being seen and scanned within three hours, and TIA patients being seen and investigated within 24 hours or 7 days. I am not sure that our concerns about the terms Stroke and TIA lead to greater clarity. Are we saying that Mini Stroke and Transient Stroke are two terms describing the same phenomenon (previously referred to as Transient Ischaemic Attack) or are we saying that a Mini Stroke is when someone is left with a minor or trivial deficit, and a Transient Stroke is when someone is left without any deficit? Mild stroke also is mentioned. Is that the same as Mini? I am left thinking that although the terms TIA and Stroke are now well past there sell by date (and immediately impoverish any discussion about vascular diseases of the brain) it may be counter-productive to introduce new terms at this stage; most people know what is meant when the terms TIA and Stroke are used whilst at the same time appreciating their (significant) limitations. If we were going to really go for it would have to be something like Ischaemic Cerebrovascular Event with Complete Recovery (ICECR?) and Ischaemic Cerebrovascular Event with Incomplete Recovery (ICEIR) or we could use the RCP approach of neurovascular event with or without residual problem. We would then have to have Haemorrhagic Cerebrovascular Event Page 13 of 14 What should we call TIAs? Appendix Two; Developing Intelligent Targets for Stroke- responses with Complete Recovery (HCECR?) and Haemorrhagic Cerebrovascular Event with Incomplete Recovery (HCEIR); we may then have to accommodate into the terms whether the bleed is primary or secondary!! Prioritising/ weighting particular interventions Page 14 of 14 In view of the time constraints on the effectiveness of the interventions for Stroke and TIA is there a case for prioritising the time to specialist assessment component of the 3 hour bundle for Stroke and the 24 hours and 7 day bundles for TIA? When these are in place other things should follow. They apply to every patient (carotid surgery is required for 1-2% of stroke patients) and once established would provide the sense of urgency and immediacy that this area of practice lacks when compared to anything involving pain, visible bleeding, or monitors that make a beeping noise. Specific interventions could be weighted if presenting the data/bundles as process capacity measures using the compliance data