An Audit and Review of Neurological Services across Gloucestershire 2012

Transcription

1 An Audit and Review of Neurological Services across Gloucestershire 2012 A report commissioned by, and for the use of

2 Contents Page 1. Introduction 3 2. Key Findings 7 3. Phase two in-depth analysis Appendices References 39 2

3 Introduction 1. Background to this work Gloucestershire Primary Care Trust commissioned Neurological Commissioning Support (NCS) to undertake a review of the services provided for people affected by neurological conditions in This phase one initial audit was undertaken using the Quality Neurology audit tool (2009 version) 2. The second audit was commissioned to review the implementation of the recommendations and progress resulting from the first phase work, and to identify where continued or further action was required. 2. Outcomes and recommendations from phase one (2010) audit An event was held following the phase one QN audit, which in itself was part of a wider review of neurological services, consulting with over a thousand people in total. This involved service users and carers, clinicians, commissioners and other health and social care professionals. Together these representatives worked together to develop local priorities for action across the short, medium, and longer-term, as outlined in Table Current audit (phase two) Phase two has included three health and social care professional audits and five focus groups for service users and carers, in total involving over 75 people. The health and social care professionals audit took place over three days: 9 10 May and 11 July 2012, with the focus groups taking place on the May, May and 11 July Professionals audit Over 40 clinicians were in attendance from a variety of disciplines, including a speciality director, neurology consultants, a clinical neuro-consultant in public health, a consultant clinical psychologist, a consultant in palliative medicine, Parkinson s, multiple sclerosis and epilepsy specialist nurses, occupational therapists, physiotherapists, speech and language therapists and a development manager from the local authority. 5. Service user and carer focus groups The focus groups were attended by over 35 people, all of whom were living with, or caring for someone with, one of the neurological conditions identified in Table 3: Table 3 Neurological conditions represented in the audit Acquired brain injury (ABI) Epilepsy Huntington s disease Motor neurone disease (MND) Myalgic encephalomyelitis (ME) Parkinson s Progressive supranuclear palsy (PSP) Stroke Multiple sclerosis (MS) 3

4 Service users were at differing disease stages, ranging from people who had recently received their diagnosis to those who had lived with a neurological condition for over 25 years. Also in attendance were those caring for them, representatives from local branches of neurology charities, and representatives from Carers UK. 6. Comparison between audits The QN tool carries out assessment in a slightly different way in the first audit. The original audit required 100% compliance for any QR or evidence-based marker (EBM) to gain a score of met, part met or not met. At the request of the Department of Health this audit tool has been updated into a new version (2011), which now gives a score value to each QR and EBM requiring 80% compliance or more to achieve a met score. The change in the tool will allow users to track the movement towards improvement by seeing the increase in the score on both the whole quality requirement and each evidence-based marker. In order to ensure the results from phase one and phase two audits were comparable, the phase 1 audit results for Gloucestershire were revised to reflect the new methodology, which revealed a total score of 273 out of a possible 405 (67%). 3.4% of questions (4 questions) were not answered. The phase two audit in 2012 achieved a total score of 303 (75%) with 11% of questions (13 questions) not answered. This relates to the whole of QR 6, Vocational rehabilitation, because in both audit sessions the participants felt they had insufficient knowledge to score this QR. This report compares the scores of both the QRs and the EBMs from both audits, highlighting comments related to each marker by health and social care professionals. QR five, Community rehabilitation and support, was the only QR to have a lower score in 2012 in comparison to the original 2010 audit. 7. Methodology used in undertaking this review 7.1 The National Service Framework for Long-term (Neurological) Conditions 2005 Service quality standards for neurology are contained within the National Service Framework (NSF) for Long-term (Neurological) Conditions (LTNC) 1 and are referred to as QRs (Fig 1). Published in March 2005, the NSF is a key tool for delivering the government's strategy to support people with neurological conditions. Key themes within the NSF are: independent living; care planned around the needs and choices of the individual; simple, timely access to services; and joint working across healthcare, social care and the voluntary sector. The QRs are designed to place all individuals with a neurological condition centrally within health and social care so that the services provided are efficient, supportive and appropriate throughout the continuum of the condition, from diagnosis to end of life. 4

5 Fig 1 The Quality requirements of the NSF LTNC Quality Requirement 1: Quality Requirement 2: Quality Requirement 3: Quality Requirement 4: Quality Requirement 5: Quality Requirement 6: Quality Requirement 7: Quality Requirement 8: Quality Requirement 9: Quality Requirement 10: Quality Requirement 11: a person centred service early recognition, prompt diagnosis and treatment emergency and acute management early and specialist rehabilitation community rehabilitation and support vocational rehabilitation providing equipment and accommodation providing personal care and support palliative care supporting family and carers caring for people with neurological conditions in hospital or other health and social care settings The QRs were audited using Quality Neurology (QN) 2, a validated audit tool (appendix 1). The full QN process, in addition to completion of the audit tool through professionals consensus opinion and available evidence, also takes into account the views of service users and carers. These are gathered via focus groups, questionnaires, and semi-structured interviews both face-to-face and over the telephone and using existing service user groups to gather the lived reality of those that experience health and social care services. Service users who are consulted are predominantly those who are currently using, or were recently discharged from receiving, services, and therefore have a view on the services as they are currently being provided. The results from the audit and the focus groups are then synthesised into a gap analysis and recommendations are suggested for review by users, their carers and families and healthcare professionals for service, improvement and development. 7.2 The NHS Outcomes Framework In addition to the NSF, the NHS Outcomes Framework has been published, together with the Adult Social Care Outcomes Framework and the Public Health Outcomes Framework, supporting the Government s desire to improve the integration of services. It sets out the outcomes and corresponding indicators that will be used to hold the NHS Commissioning Board to account in the future (Fig 2). 5

6 Fig 2 Care Domains of the NHS Outcomes Framework 1 Preventing people from dying prematurely 2 Enhancing quality of life for people with long term conditions Helping people to recover from episodes of ill health or following injury 3 Ensuring that people have a positive experience of care 4 5 Treating and caring for people in a safe environment and protecting them from avoidable harm Each area of the framework follows a similar structure: a single or small number of overarching indicator(s), which will allow the Secretary of State for Health to track the progress of the NHS as a whole in delivering outcomes across the breadth of activity covered by that area; a small set of improvement areas where evidence suggests that significant improvement or health gain is possible, which the NHS Commissioning Board will be tasked with delivering better outcomes for; and a supporting suite of NICE Quality Standards setting out what high quality care looks like for a particular pathway of care. All 5 areas of focus have significance for people living with a neurological condition, and will be taken into account as the Framework continues to form. However, the most immediately clear relevance to neurology is the second area: Enhancing quality of life for people with long term conditions for which the overarching indicator of: Health-related quality of life for people with long term conditions is identified. The Improvement areas in relation to this are: 1. Ensuring people feel supported to manage their condition measuring how well the NHS as a whole is doing in supporting people to look after themselves and handle the consequences of their conditions; 2. Improving functional ability in people with long-term conditions measuring the extent to which people living with a neurological condition are able to live as normal as life as possible by looking at their levels of employment; 3. Reducing time spent in hospital by people with long-term conditions measuring how successfully the NHS manages conditions through looking at unnecessary hospital admissions; 4. Enhancing quality of life for carers recognising the vital role carers play in supporting people with a neurological condition; 5. Enhancing quality of life for people with mental illness to capture the quality of life and insight into how people are able to manage their condition by looking at employment; 6. Enhancing quality of life for people with dementia an indicator is still in development. 6

7 Key Findings Although, Gloucestershire was not able to meet all of the Quality Requirements (QRs) in phase 2 of the audit, there was significant improvement with an overall score of 303 in comparison to 273, out of a possible 405, achieved in phase 1. The QRs were all either met or part met, with the exception of QR 6, as none of those in attendance at the audit meetings felt they had the knowledge or insight to provide accurate information in relation to this area. Progress from Phase audit Generally there has been a gradual progression in many areas, with services progressively improving to achieve the QR s of the National Service Framework (NSF) for Long Term Neurological Conditions. (The maximum score achievable for each QR is highlighted at the beginning of each QR sections.) Table 1 Progress of Quality Neurology Audit Phase 1 and 2 Quality requirement Phase One Phase Two Overall change 1 Increase 33 to 41 2 No change 3 Increase 28 to 30 4 Increase 33 to 40 5 Decrease from 27 to 23 6 Not audited in phase two 7 Increase from 31 to 34 8 Increase from 14 to 20 9 Significant increase from 8 to Significant increase from 23 to Increase from 17 to 26 Overall 1 met, 9 part met, 1 not met 4 met, 6 part met, 1 not met Each QR has been broken down into evidence-based markers (EBM) (see Appendix 2), which are measured as met, part met or not met in order to inform the score of the overall QR. QN requires approximately 80% compliance of each evidence-based marker for that overall marker to be deemed met, and in turn, all EBMs of a QR are required to be met before the QR itself can be deemed to be met. 7

8 All QR s are now met or part met, with three additional QRs being met in phase two s audit compared to phase one. Eight QRs have seen improvement made, two with significant improvement (and increase of more than 10 points). One QR has not seen any change, one was not audited, and one has seen a slight decrease in points. Table 2 shows the progress made for each recommendation in phase one from the perspective of health and social care professionals and service users and Comparisons against other PCT areas where a QN audit has taken place is shown in Table 3. Table 2 Outcomes and recommendations Phase 1 (2010) Recommendation Progress RAG Progress comments by Service Users Keyworkers The Parkinson s Disease team The keyworker has Develop and extend case has increased capacity and is at made a big difference co-ordination and key full establishment with new for those living with working to patients with a members of the team receiving Parkinson s and MND. long-term neurological induction training. However for those with condition to provide a MS this still needs single point of access in A Motor Neurone Disease addressing as there is line with national guidelines Clinical Coordinator was still no key worker. and best practice appointed following the audit in Neurology as a whole standards and remains in post. needs to be looked at and progress needs to be made for other neurological conditions. RAG Do they address all the issues? For example, do they cover financial issues as well as clinical/medical/ot? Do they have a brief to follow up queries and requests and be responsible for ensuring they are addressed, or do they just provide a post office or telephone call centre? Physiotherapy Provide access to localitybased physiotherapy services, and improve continued access to physiotherapy over a sustained time period. Physiotherapy services are now integral to the locality-based multi-disciplinary team service model Access to specialist neuro-physio was an important part of the recommendation and would question the progress on this. What is meant by "services are now integral to the localitybased multi-disciplinary team service model"? What does it mean for the user? 8

9 Access to information Produce an information booklet for people diagnosed with a neurological condition answering key questions in relation to access to services in Gloucestershire. An information booklet was produced following the audit and the 2nd edition of it is currently being published and will be launched at the audit review day in October 2012 The information booklet needs ownership by the PCT to ensure effective distribution and use. Copies of letters Establish a requirement for health professionals to routinely send copies of out and in-patient letters to patients. Copies of letters from healthcare professionals are available to patients; however these will need to be requested by the patient. This still doesn t meet the needs of the patients as copy letters are not sent to them automatically. It is not acceptable to tell people that they have to request the letters, this should be a routine process with an opt-out, rather than the other way round. Wheelchair services Map problems with wheelchair services and work with the wheelchair service providers to ensure the services provided to people with neurological conditions are delivered effectively. Waiting times have been significantly reduced from 8 weeks to 2.8 weeks in just under two years. Postural management is being addressed through staff training and investment from commissioners to increase the size of the wheelchair services team. Additionally, therapists are now available to assess and provide advice on pressure care management and postural management. There has been really good progress made with this recommendation although there are still issues over entry criteria. The answers don't address the question of advice and help for people who do not meet the eligibility criteria. Breaks and respite Review the impact of the decision to close respite services at Ermin Neurological Centre, with a focus on information in respect of respite for carers, carers grants and carers assessments. Gloucestershire County Council (GCC) currently fund Carers Gloucestershire to provide information, advice and advocacy to carers. They work directly with carers but also with organisations and services. Within GCC there is a carer s development team who work directly with staff to ensure they are up to date on carer s assessments, support to carers and their legal right. Carers funding also provides short breaks provision across the county, provided by various organisations including Brunelcare, Crossroad, Alzheimer s Society, Gloucester Lifestyles and Building Circles. Following a carer s assessment, eligible carers have access to flexible budgets, Carers Emergency Service and Positive Caring Programme. There has still been no replacement for Ermine house. This gave vitally important respite and real breaks for carers, not just a few hours to go shopping. Sympathy, advocacy and 'positive' programmes for carers are no substitute for proper respite care for patients, and patients/carers should not have to rely on charities to get what they need. In addition, there is a very mysterious process around assessments (pounds per week notional budget) and actual payouts (much smaller) which has 9

10 Transport Contribute to the countywide review of transport services and ensure the views of patients with a neurological condition are effectively represented to the review body. NHS Gloucestershire continues to ensure that patient transport is available, for all eligible patients. The PCT follows Department of Health criteria for the provision of transport for patients with medical conditions. never been satisfactorily explained. The payouts do not cover the cost of care, even where that care is provided in the patient's home. In a rural county such as Gloucestershire, access to public transport across the county was an important recommendation. The issue was not just about patient transport. County Council input into this recommendation is also needed. Training for professionals Develop a training strategy and co-ordinate the training of generic professionals and GPs in partnership with neurologists and the key local stakeholders including service users and carers. A training session on palliative Motor Neurone Disease (MND) is scheduled for October 2012 at the Cotswold Care Hospice. A presentation to GPs and District Nurses in the North Cotswold area on the MND Clinical Coordinator role is scheduled to take place in the autumn. A comprehensive education programme on palliative care is available for clinicians Good progress. Regular updating and repeating should be scheduled. Good progress has been made with this recommendation, regular updating and repeating should continue to be scheduled. A two day course, designed to give a general overview of managing patients with a brain injury, is scheduled for October This course is suitable for support workers, care staff, and those new to the field of brain injury A Parkinson s Disease teaching session is scheduled in August for specialist teams. A two day training course for GPs led by local neurologists in Over 60 GPs were trained. A neurology study day is scheduled in September for GPs Professionals do not appear to be offered any training on the availability of services from the NHS, charities and Social Services and patients/carers think that this is a serious omission. Patient and carer welfare should be part of the brief for all neurological consultants. 10

11 Psychological support Ensure that people with a long-term neurological condition have access to psychology services. There has been an increase in capacity in clinical psychology in the Brain Injury Team. Work is underway to increase the amount of psychological support to patients with long term conditions. Eligible patients following assessment also have access to the countywide IAPT services (Improving Access to Psychological Therapies) For the majority of those living with a neurological condition no change has been seen in psychological support. IAPT has no specific knowledge about supporting neurological patients. An approach has been made to the Stroke Association about up-skilling IAPT staff. 11

12 Parkinson s Disease The instigation of a Get it on time campaign to increase awareness of the need for people with Parkinson s to have timely access to the right drugs as and when they need them, especially within a hospital setting. Parkinson s Disease nurses have been providing training sessions to staff at Community Hospitals and Nursing Homes and to citizens at Parkinson s UK and other charities to raise awareness of Parkinson s disease and to promote the Get It On Time campaign. This relates to getting your medication on time. NHS Gloucestershire has agreed for Gloucestershire Neurological Alliance and health care professionals from NHS Care Services to use the Guide and PALs bus to promote awareness of Parkinson s disease and other neurological conditions. Excellent developments have been made with regards to the PD nursing service and the MND Coordinator post, although the expansion and development of both of these were a result of lobbying and funding from the two charities and happened outside the scope of any response to the review. Work still needs to be carried out on explicit patient care pathways if the full value of the nursing service is to be achieved, this needs to be acknowledged. Promotion of the Get It On Time campaign (improving in-patient care and timely medicines management for people with Parkinson's) - Claire Pollock, PDNS with Gloucestershire Hospitals Trust, is still trying hard to progress this with some input from the Influence and Service Development Officer at PDUK and a hospital pharmacist, but had little senior management or commissioner buy in. Both of the above are hampered by the Parkinson's Steering Group going into abeyance, initially by default and latterly, after complaining about lack of updated information, by intent. A clear structure needs to be adopted and made transparent with people of appropriate seniority being brought together. 12

13 Work on Parkinson's related issues, or other condition specific issues, does not have to be done via a number of separate on-going groups. This can be done as "satellite" work from a generic neurology place. If not done in a clear way then there is a danger of planning not being done correctly with no clear pathways, no patient/service user/carer involvement, no strategic coordination or whole systems management and definitely no value for money for the taxpayer. Multiple sclerosis The administering of steroid therapy within the home. A Community IV Therapies Team has now been commissioned for Gloucestershire Healthcare community. A protocol has been developed by the team to administer IV steroids to MS patients in Gloucestershire Community Hospitals. Gloucestershire Hospitals NHS Foundation Trust and NHS Care Services are developing the details of the pathway ahead of the commencement of the service. There has been good work on this recommendation and is moving forward. Implementation is eagerly awaited. 13

14 Motor neurone disease Appointment of an MND An MND co-ordinator appointed and work has begun on developing a pathway for MND patients. The appointment of the MND Co-ordinator has made a huge difference to the care of people with MND. Table 3 Comparison against other areas NHS Gloucestershire Comparison Sites National Service Framework Quality Requirements Phase 1 Phase 2 Site 1 Site 2 Site 3 Site 4 Site 5 Phase two (2012) suggested recommendations The following recommendations have been made as a result of the findings of this audit: 1. The provision of information at diagnosis and throughout the course of the disease requires further attention 2. Development of integrated care pathways to support patient information 3. Ensure there are integrated care plans for all individuals living with a neurological condition, and their carers 4. Explore joint commissioning arrangements cross-border to commission services for those living with rarer conditions such as Huntington s. 5. Improve the system to manage follow up appointments more efficiently. Investigate other areas of good practice in other areas. 6. Establish a formal process for repatriation and patient transfers to stop people falling through the net 7. Explore IT systems which could supplement current services to patients and provide professional advice to GPs 8. Ensure GPs and frontline staff are fully trained in the recognition of neurological symptoms 9. Waiting times for patients to see Consultants via A&E in Cheltenham needs further attention 10. Greater clarity around continuing care needs to be established and included in care pathway 11. Look at developing assistive exercise for on-going rehabilitation 12. The key worker system is still not operational across all neurological conditions and requires further attention 13. Develop a communication pathway around community hospital transfers 14. Explore working relationships with the voluntary sector to deliver outpatient and day rehabilitation programmes 15. A piece of work needs to be developed between all agencies for the provision of vocational rehabilitation 14

15 16. Develop a single point of access for those with a neurological condition for signposting/advice 17. Explore age appropriate day/residential care e.g. Dean Neuro Centre or centres offering similar services within statutory funding 18. Explore joint commissioning arrangements with local authority to access respite provision e.g. Dean Neuro Centre or centres offering similar services 19. Ensure that carers are informed of their right to a carer s assessment and encourage them to ask for this 20. Explore the provision of carers counselling and support services The following are service models from other areas that could be replicated to address some of the above: Exercise programmes - ARNI/RENEW Cornwall Primary Care Trust Risk stratification of Parkinson s patients to enable practice nurses to supplement follow up - Peterborough Practice Nurse Model and Great Yarmouth and Waveney Primary Care model of management communication local GP with Special Interest Paediatric system and NeuroResponse Message in a bottle extended to all neurological patients regarding condition and care 15

16 Phase two in-depth analysis 1. Quality requirement 1: a person-centred service People with long-term neurological conditions are offered integrated assessment and planning of their health and social care needs. They are to have the information they need to make informed decisions about their care and treatment and, where appropriate, to support them to manage their condition themselves EBM1 EBM2 EBM3 EBM4 EBM5 Phase 1 audit (2010) = Part met 33 out of a maximum 80 Phase 2 audit (2012) = Part met 0 QR 1 Original QR out of a maximum 80 EBM 1 part met EBM 2 part met EBM 3 part met EBM 4 part met EBM 5 - met Information It was agreed by professionals and patients alike that information at diagnosis regarding the condition and its management, and available services and support, is critical. Current levels of provision are still inconsistent and appear condition-dependant, with much information accessed through specialist nurses or teams. Reports from professionals of patients refusing information, including the GlosNA booklet, coupled with reports from patients that they should be offered the GlosNA book at diagnosis (but they had not been offered this); demonstrate an inconsistency in provision of information which requires further exploration and a more systematic approach to availability and access to information is available. Availability of information for people for whom English is not a first language is problematic, with standard information in other languages not considered to be available. Assessment of information needs is recorded on the Functional Assessment Care Environment (FACE) assessment tool as standard. District Nursing and Gloucestershire County Council use this documentation but it is not used comprehensively by all healthcare professionals. Coordination There were major difficulties noted around timely assessments and individual care planning across all agencies possibly caused by a fragmented approach and low levels of shared information across health and social care. All staff agreed that integration across a broad range of concerns was needed. 16

17 There were problems with information sharing amongst professionals, specifically to care homes on discharge from acute settings, resulting in duty of care concerns. There were also difficulties with incomplete or out-of-date information and results, and a lack of planned reviews. This difficulty was also a prominent concern of patients themselves. It was felt that software systems such as ADASTRA could be a possible solution to this but it was felt that updating this currently relied heavily on GPs. There is no universal point of contact for people with a neurological condition, although recommendations from the Phase 1 audit to appoint specialist nurses and an MND Coordinator have proved successful in improving care. Additionally the named contact/keyworker scheme also works with the brain injury team who act as main points of contact for people with brain injury and their patients report this as a valued service. Concerns arise for those patients who do not have this form of dedicated support; General Practitioners (GPs) were the first point of contact for many people, and it was felt that the voluntary sector were underutilised and could provide much in the way of support. Further work around integrating information pathways is needed, and it was thought that rarer conditions could be supported through cross-border arrangements for economies of scale in order to deliver a quality service within available resources. Assessment and planning Conflicting and confusing policies around continuing healthcare, problems with continuity and inconsistency in eligibility criteria were all felt by those present to contribute to patients falling through the gap between continuing healthcare and social care funding This was a particular difficulty in the Cheltenham area. Patients treated out of country, such as those with ABI, struggle with funding on their return, and both transitional and cross-county arrangements were felt to be problematic. Specialist nurses try to make contact with each other when patients move localities but it was felt this was largely a reactive process. A formal process needs to be agreed for repatriation. Patients were largely in favour of a single care plan to act as a point of coordination for all disciplines and elements of care which could be referred to and updated. Electronic records might be a positive step, whilst all professionals agreed that a joint continuing healthcare/social care assessment and planning process was needed. Education Whilst a number of self-management programmes were noted in addition to the Expert Patient Programme (see good practice ), the best model of providing education to patients was questioned. This was highlighted by an MS starter course which was cancelled because of a lack of interest. It was stated that for any patient programme groups, patient interest was key to success and suggested that the voluntary sector might be better placed to engage and educate rather than the NHS. Good practice to extend or learn from: Headway, a charity supporting people with head injury, highlighted examples of positive experience where they had been referred to as patients first point of contact for advice and information. 17

18 Pockets of good practice included integrated notes and assessments for ward-based teams in secondary care; improvement in patients receiving a copy of correspondence, and a positive system utilised for those with Acquired Brain Injury (ABI) who, it was stated, have a good record system (which differs from those with other conditions. Recording of professional visits within patient notes for cross-discipline communication, as carried out for patients with MND. The Cornwall model of a Neurological information advisor was considered positive as a method of information provision and a single point of contact. A transition clinic is available for epilepsy patients in-county. A number of self-management programmes exist including: Positive Caring for Carers Programme Newly diagnosed days Understanding physical, cognitive and psychological consequences of brain injury Condition specific training with provision of information Carers groups and family support days Positive Caring for Carers Programme Gloucestershire County Council Brain Injury Team Brain Injury Team Speech and Language Therapy Team Headway and Brain Injury Team Gloucestershire County Council Lived experience: what individuals with neurological conditions had to say: The information passed between consultants is not always correct; when I was discharged, the neurologist on duty didn t know about my frontal lobe brain injury. The information provided doesn t see beyond the acute phase [of ABI] the NHS is a maze to navigate and help from within the system s minimal. The [ABI] starter pack was very positive idea would be good to be available for other conditions A good GP is the one who admits they don t know and then finds out. You re not given [information]; you have to dig it out. There was absolutely no information about [Huntington s] out there. I got everything from a Huntington s volunteer. [The GlosNA Info Booklet is] an excellent booklet, that s what people want, but it s no good if people can t get their hands on it; it needs to be given to people at diagnosis. Should we have electronic records instead and move away from old fashioned paper? There could be a liaison post to bridge the gap [between health and social care]. I have a good relationship with my GP if he doesn t know something he is willing to find out 18

19 2. Quality requirement 2: early recognition, prompt diagnosis and treatment People suspected of having a neurological condition have prompt access to specialist neurological expertise for an accurate diagnosis and treatment is as close to home as possible EBM1 EBM2 EBM3 EBM4 EBM5 Phase 1 audit = Part met 35 out of a maximum 42 Phase 2 audit = Part met 0 QR2 Original QR out of a maximum 42 EBM 1 part met EBM 2 met EBM 3 met EBM 4 part met EBM 5 - met There are currently no formal processes for meeting NICE guidelines, whilst gaps in training of frontline Accident and Emergency (A&E) staff to improve recognition of neurological symptoms are evident. The multidisciplinary team (MDT) approach was considered the ideal and whilst pockets of good practice were evident, a lack of a rehabilitative medicine consultant was considered detrimental, detracting from the overall MDT approach. Capacity issues were cited with both hospital and community-based specialist nurses, but working relationships were considered good. Community-based specialised nurses have informal support from the hospital, and whilst there is a lack of formal clinical governance, primary and secondary care work co-terminously at present. It was felt that diagnostic services followed NICE guidelines, and whilst there were capacity issues, scanning time had improved. Regarding access to appropriate services, availability of functional electrical stimulation (FES) has improved, but there were still concerns around respiratory support for people with MND. Follow-up appointments were considered inconsistent, and only provided to those who shouted loudest, with a lack of neurologist capacity to undertake these due to the high volume of new patients, and unclear signposting to appropriate services and follow up due to a lack of pathways. Good practice to extend or learn from: Neurologists have seen an increase in letters from GPs requesting advice. The GP with a special interest in paediatrics (GPwSI) s communication system is positive and could benefit neurology. GPs are undertaking medicines reviews with competence. MDT working is in evidence through community-based clinics from the brain injury team, and joint neurologist and specialist nurse clinics undertaken in secondary care. 19

20 Lived experience: what individuals with neurological conditions had to say: Referrals should be made within a week so that they re prompt. I was referred to a specialist in February and I m still waiting for my appointment. No-one should be discharged without a care plan this should link back into services people would know where to go and what they needed [post discharge]. 3. Quality requirement 3: Emergency and acute management People needing emergency admission for a neurosurgical or neurological emergency are to be assessed and treated in a timely manner by teams with the appropriate neurological and resuscitation skills and facilities QR3 Original QR EBM1 EBM2 EBM3 EBM4 EBM5 Phase 1 audit = Part met 28 out of a maximum 33 Phase 2 audit = Met 30 out of a maximum 33 EBM 1 met EBM 2 met EBM 3 met EBM 4 met EBM 5 - met Consultant neurologists attend Cheltenham Hospital for three days per week and have limited capacity, leading to geographical discrepancies between patients referred by to A&E in Gloucester, where they are seen within 24 hours. Waiting times in Cheltenham are longer as a result of the neurologists attendance there, which is impacting on quality and cost of care, and causing frustration for neurologist and patients alike. There are long waiting times for spinal injury patients; capacity issues exist both within community hospitals for repatriation for patients discharged from the national Spinal Injury Centres, and within the national centres themselves (under commissioning responsibility of the Specialist Commissioning Board). Despite this, Gloucestershire hospitals are required to repatriate certain groups of patients from Bristol specialist services within a specified timeframe to which they are alerted to them by the trauma network system. Local hospitals should be admitting medically stable patients only. There are problems with appropriate equipment being available on wards to treat repatriated patients. Good practice to extend or learn from: NICE guidelines are followed for patients with head injury: On discharge from A&E they are given advice leaflets, Information is being sent to GPs every year informing them of clinics available to those being managed in the community, An internet referral system is also available, supporting self-management. 20

21 Lived experience: what individuals with neurological conditions had to say: After the accident, Gloucester Royal didn t provide information or support they should ve done more to find out about our situation, so we d know how best to manage and handle the changes after we d been discharged. Frenchay Hospital were very helpful; they put me on a course. The problem is remembering about these things and knowing where to go! 4. Quality requirement 4: Early and specialist rehabilitation People with long-term neurological conditions who would benefit from rehabilitation are to receive timely, on-going, high-quality rehabilitation services in hospital or other specialist settings to meet their continuing and changing needs. When ready, they are to receive the help they need to return home for on-going community rehabilitation and support. Phase 1 audit = Part met EBM1 EBM2 EBM3 33 out of a maximum 48 Phase 2 audit = Met 0 QR 4 Original QR out of a maximum 48 EBM 1 met EBM 2 part met EBM 3 met There were issues noted around providing optimum levels of high intensity rehabilitation versus early discharge to community settings as a result of bed pressures. The appropriateness of these community settings was also questioned as they are nonspecialist, and could be further from the patient s home than the hospital, with patients consequently wishing to spend more time in an acute setting, where they felt more comfortable, or were closer to home. The majority of people living with ABI felt that access to rehabilitation post-accident was positive, but longer-term support was reported to be harder to access, with people completing their intensive rehabilitation, then falling off the radar. The open access model, utilised in healthcare, allows on-going rehabilitation to adapt to the changing needs of patients whereas the closed-case model used in social care meant this was not consistent across disciplines. Capacity issues in the community were noted for the same service, however, with some therapists reportedly only available for 15 minutes each fortnight. There were issues with integrated working for those on continuing healthcare, and whilst those with ABI are supported in the community by the brain injury team, there is no similar community support for those with other neurological conditions. 21

22 Insufficient facilities on wards to manage patients with severe cognitive difficulties can cause major challenges. These patients are currently sent out of county, although there are limited places available for this. The provision of specialist equipment in both secondary care and community, especially postural seating was a concern. Contractual issues governing the accessibility of wheelchairs in different settings and different phases of the patient s condition impact on the individuals access to appropriate equipment. Good practice to extend or learn from: Rehabilitative services specifically for people with ABI and MND were felt to be good, and the support from the voluntary sector was viewed in a positive light. The Brain Injury Team has become Sensory, Modality, Assessment & Rehabilitation Technique (SMART) assessors allowing them to assessments for ABI in-county. Waiting times for specialist wheelchairs have been dramatically improved. Lived experience: what individuals with neurological conditions had to say: I got two days per week of rehab, for six months, which was fantastic. But I didn t get reassessed after those six months, and after that I didn t get much support. Referrals should be made within 24 hours to a week to ensure that people are being seen promptly once they re discharged. I can self-refer for physiotherapy. 5. Quality requirement 5: Community rehabilitation and support People with long-term neurological conditions living at home are to have on-going access to a comprehensive range of rehabilitation, advice and support to meet their continuing and changing needs, increase their independence and autonomy and help them to live as they wish EBM1 EBM2 EBM3 Phase 1 audit = Met 27 out of a maximum 30 Phase 2 audit = Part met 0 QR5 Original QR out of a maximum 30 EBM 1 part met EBM 2 part met EBM 3 met It was felt by all professionals present at the audit that community rehabilitation and support services available fully support those with a neurological condition, their family members and carers. 22

23 However, although people were being supported in their own homes, there are geographical inequalities in evidence, which patients also expressly noted. It was also noted that some people who see a Gloucestershire GP live out of the county, and so cannot be referred for therapy services such as speech and language or occupational therapy. Services can only be accessed by those within the county. Joint working with voluntary sector organisations should be explored in terms of outpatient and day-rehabilitation programmes. Regarding multidisciplinary working, there are major barriers within social care, in terms of speed of engagement, continuity of individuals involved in cases and lack of shared knowledge. Within healthcare, there are capacity issues for specialist professionals, such as a neuro-occupational therapist, and there is no community based neurological rehabilitation team. Overall, it was felt that a more patient-centred approach to multidisciplinary care is needed. Additionally, inconsistencies in referral pathways were felt by patients to be barriers to accessing timely and appropriate care, and the variability of self-referral options impacts how well individuals can self-manage. Good practice to extend or learn from: Patients with acquired brain injury (ABI) are supported in the community with targeted programs of rehabilitation, and Headway, a charity for people with brain injury, is working more closely with the brain injury team to move towards more holistic support. Lived experience: what individuals with neurological conditions had to say: People with MND access things through the MND Association they have a person who goes around like a terrier chasing things up! You have to find your own services really Headway really helped sort it all out. Headway liaises with the hospital for you [people with ABI] rather than the hospital having direct involvement. You can go more than a year sometimes without any appointment. [person with MND, agreeing with someone with Parkinson s] I attend exercise classes at my local branch [MS] it has made a real difference to my life It would be good if exercise classes were there for other conditions. 6. Quality requirement 6: Vocational rehabilitation People with long-term neurological conditions have access to appropriate vocational assessment, rehabilitation and on-going support to enable them to find, regain or remain in work and access other occupational and educational opportunities EBM1 EBM2 EBM3 Phase 1 audit = Part met 24 out of a maximum QR6 Original QR EBM 1 not met EBM 2 not met EBM 3 not met 23

24 As no attendee within the audit groups felt they had sufficient knowledge to comment on this QR this was not scored. Noted within other discussions were problems around variability of return to work, dependant both on locality and condition. It was felt that, due to workload pressures, this is supported in a reactive rather that proactive way, relying on the voluntary sector to provide support. 7. Quality requirement 7: Providing equipment and accommodation People with long-term neurological conditions are to receive timely, appropriate assistive technology/ equipment and adaptations to accommodation to support them to live independently, help them with their care, maintain their health and improve their quality of life QR7 Original QR EBM1 EBM2 EBM3 EBM4 EBM5 Phase 1 audit = Part met 31 out of a maximum 45 Phase 2 audit = Part met 34 out of a maximum 45 EBM 1 part met EBM 2 part met EBM 3 part met EBM 4 part met EBM 5 - met Despite individual points of contact within different providers, and varying sets of information provided on different aspects of equipment provision, (as shown within good practice ) there is no single point of access or information for all elements of equipment. Communication aids are primarily obtained from Frenchay Hospital although there are several other sources available for communication aids and other equipment across Gloucestershire, which can be loaned or bought. Environmental controls, specialist wheelchairs and tele-care are all assessed in-county and can source appropriate equipment from elsewhere if needed. There are time delays in accessing equipment, though, with particular difficulty obtaining respiratory equipment, felt to be due to funding issues within primary care commissioning. The regular and on-going review of equipment needs for Gloucestershire Industrial Services (GIS) Healthcare equipment is variable and often reactive rather than proactive, although other equipment services are considered more proactive in their follow-up approach. A county-wide home improvements agency exists to manage minor adaptations in a timely manner, although major adaptations are not done urgently and can take a long time. Information to patients and carers regarding provision and waiting times for wheelchair and tele-health services is positive although funding and administrative processes adversely impact quality of service, and there is no integrated care plan for equipment needs to be documented in (QR1). Vouchers are available for wheelchair provision but this is not always explicit to patients. 24

25 Support for specialist equipment is frequently confusing for patient, carer, and professional alike and there are few options for joint funding. The level of equipment varies depending on need, funding streams and availability of external funding, and at present, the needs of those patients with fluctuating conditions are not always responded to rapidly enough. Good practice to extend or learn from: Services exist to inform patients and carers of waiting times for provision and installation within wheelchair and tele-health services Standard equipment is provided very quickly through GIS, who also provide equipment information leaflets for maintenance and an equipment support helpline Fast-tracking systems within the home improvements agency exist for those with rapidly progressing conditions, to allow them to stay at home. GIS, wheelchair services, speech and language therapy and tele-care operate systems for regular tracking and recycling equipment. Lived experience: what individuals with neurological conditions had to say: You can t return equipment when you don t use it or need it anymore things like walking sticks and frames. I got a new chair because my needs changed, and they delivered it, but they said that won t take the old one away because it s contaminated. I was loaned an electric wheelchair by John Radcliffe neurology department I know of another person who also has one [MND patient] waiting times for wheelchairs has improved dramatically I ve never had any problem [access to equipment]. 8. Quality requirement 8: Providing personal care and support Health and social care work together to provide care and support to enable people with long-term neurological conditions to achieve the maximum choice about living independently at home EBM1 EBM2 EBM3 EBM4 Phase 1 audit = Part met 14 out of a maximum 24 Phase 2 audit = Met 0 QR8 Original QR out of a maximum 24 EBM 1 part met EBM 2 met EBM 3 part met EBM 4 met There is limited capacity available for age appropriate day-care and residential care, particularly within easy travelling distance of service user s homes, although it was thought that those with a personal budget have more choice. 25

26 Training to care homes and in-house training programmes have been developed by some nursing homes (see good practice) and this is commendable but due to high staff turnover within care homes more training is still required. Those present agreed that whilst there is largely equitable access to personal care and support services, there is variability in social workers knowledge around neurological conditions. Professionals present felt there were inconsistencies around applying for fully funded NHS continuing care and major issues with the interpretation and application of eligibility criteria. It was also felt, by patients and carers, that social care s closed-care model made re-accessing necessary services very problematic. There is no projection of need for housing support for vulnerable people and this access is becoming more problematic as funding decreases and where contracts do exist with providers, they are not always fully utilised. However, some positive evidence of joint working within the county to support house-related issues for vulnerable people does exist. Good practice to extend or learn from: There are training days offered by the brain injury team looking at the impact of brain injury. Training is offered by the Parkinson s care home support team and the third sector also offers support to care homes. Age appropriate day care is available in some areas, with programmes run by Headway for those with ABI, in addition to facilities for younger patients provided by Leonard Cheshire, Star College and Wheatridge Court. There is some evidence of joint working across health and social care to provide programmes of care encouraging individuals to be as independent as possible, and whilst this is variable, efforts are being made to extend this practice. The provision of appropriate wheelchairs and seating are regularly reviewed, and there is timely and rapid response to those with MND, to enable people to stay in their own homes at the end stage of their condition. Lived experience: what individuals with neurological conditions had to say: The wheelchair service generally has improved drastically. Powered wheelchairs are a different matter though it s a nonsense! [In reference to the requirement to have had an indoor wheelchair before you can access an outdoor powered chair.] I needed a wheelchair I had to go into hospital first; they give you one to take home. There aren t many places geared for younger people [30 s-40 s]. Ermine House was specifically for younger people and the Dean is perfect [for younger people] but it s very expensive. I don t want to be on a geriatric ward [when having respite] I m not old! 26

27 9. Quality requirement 9: Palliative care People in the later stages of long-term neurological conditions are to receive a comprehensive range of palliative care services when they need them, to control symptoms, offer pain relief and meet their needs for personal, social, psychological and spiritual support, in line with the principles of palliative care QR9 Original QR EBM1 EBM2 EBM3 Phase 1 audit = Not met 8 out of a maximum 21 Phase 2 audit = Met 19 out of a maximum 21 EBM 1 part met EBM 2 met EBM 3 met There has been significant improvement within palliative care services from the last audit; with referrals, staffing and coordination all markedly better. Although joint ward rounds were highlighted as desirable they were considered impractical. Where possible consultants will see patients together on wards but this is on an ad hoc basis. A quarterly joint working group meeting has been set up. There was general consensus that problems exist with consistent night care if a patient is not in receipt of continuing healthcare. Whilst it was felt historically there had been discrimination between neurological patients and other conditions within the hospice setting this is no longer the case. It was however felt that the management of those with a neurological condition could be difficult within current resources. It was agreed that there is a large amount of training for staff delivering palliative care in the community and training can be easily arranged to address any gaps that might be identified, although palliative care training sessions are intermittent for neurologists and the neurorehabilitation team. Good practice to extend or learn from: Referrals to palliative care and end of life care have been much improved over the past two years. There is a specialist neuro-palliative team with excellent input from palliative care clinicians to neurology. A great deal has been achieved regarding Advanced Care Planning, and proactive endof-life care planning is undertaken for those with MND, but this is not consistent across the county. The Liverpool Care Pathway for the dying has been adopted. There is good liaison between the palliative care team and neurology team. 27

28 10. Quality requirement 10: Supporting the family and carers Carers of people with long-term neurological conditions are to have access to appropriate support and services that recognise their needs both in their role as a carer and in their own right QR10 Original QR EBM1 EBM2 EBM3 EBM4 EBM5 Phase 1 audit = Part met 23 out of a maximum 42 Phase 2 audit = Part met 35 out of a maximum 42 EBM 1 part met EBM 2 met EBM 3 part met EBM 4 met EBM 5 part met There is generally perceived to be increased awareness of carers needs across health and social care but carers needs are not actively supported in a consistent or integrated way. This was felt to be primarily due to lack of continuity in social care because of utilisation of a closed case model, the struggle of secondary care to initiate social care assessments for carers, and the willingness of carers themselves to undertake assessments when they are offered. Whilst there is much good practice amongst the voluntary sector and in pockets within statutory services (see good practice ), there appears to be no crisis support at all for those caring for someone with Huntington s disease, and whilst the young carer s service is positive, it was agreed that more could be done for children and families. Carers breaks vary geographically; with personal budgets also having an effect. There were some examples where breaks had been arranged, but families had not utilised these. Improving Access to Psychological therapies (IAPT) have been extended to people with neurological conditions and their carers, but it was accepted that psychological support for carers is limited. There was awareness of training for carers with carers themselves citing the Caring with Confidence course, however, on-going availability of a social care programme supporting carer s awareness, education and training was questioned. Good practice to extend or learn from: Wheelchair services involve carers in training and offer supportive courses. Carers can register for a carers in emergency scheme. There is a young carers service in the county. The voluntary sector provide considerable support in Gloucestershire, including support for young carers of Huntington s, and various self-referral carers groups The MND Co-ordinator supports people caring for those with MND. 28

29 Carers are treated as partners in care during the planning process. Lived experience: what individuals with neurological conditions had to say: I have a carer s emergency card that provides 48 hours of support. The Caring with Confidence course is really good. It helped me to speak out and get the equipment we needed. Support for carers, like counselling, is a real gap. More appropriate respite care should be available. 11. Quality requirement 11: Caring for people with a neurological condition in hospital or other health and social care setting People with neurological conditions are to have their specific immunological needs met while receiving treatment or care for other reasons in any health or social care setting EBM1 EBM2 EBM3 EBM4 Phase 1 audit = Part met 17 out of a maximum 30 Phase 2 audit = Part met 0 QR11 Original QR out of a maximum 30 EBM 1 met EBM 2 part met EBM 3 met EBM 4 not met As outlined in QR1 there is no integrated care planning in place, although there are clusters of condition-dependant good practice across the county (see good practice ). There are significant issues when those with neurological conditions are admitted to secondary care orthopaedic wards, especially if the individuals have cognitive and / or behavioural problems. There were also major difficulties for those with Parkinson s in accessing their medication on time when in secondary or intermediate care. It was highlighted that interpreters have not always been used for patients where English is not their first language, and complaints have been received regarding the lack of translation facilities in certain circumstances. Good practice to extend or learn from: The Purple Butterfly scheme has been running for three months (at the time of the phase two audit), and highlights any known cognitive impairment on a patients notes to remind staff to take extra care in dealing with them. For those with MND and dementia there are patient-held documents that accompany the patient into hospital if the patient requires admission 29

30 The Dean Neurological Centre use an unplanned transfer form and Message in a bottle scheme, for liaison with the neurological care team when patients are admitted, (although this is dependent on the reason for admission) People with Parkinson s are encouraged to inform their specialist Parkinson s team if they are admitted to hospital so that informed care can be ensured during the admission Lived experience: what individuals with neurological conditions had to say: It would be good to know [that all care details were in one place, i.e. a care plan] so that one professional knows what the other one is saying. And good to know what the professionals are saying about you, too. If you called the paramedics, they could refer to it [care plan] straight away. 30

31 Appendix 1 Quality Neurology Quality Neurology (QN) 1 was developed collaboratively by the Motor Neurone Disease Association, Parkinson s UK, the Multiple Sclerosis Society and Ataxia UK. The tool was match funded by the Department of Health and had support from the Social Policy Research Unit at York University. Validation of the tool took place between April 2007 and December 2009, following which a report was submitted to the Department of Health s Long-term research initiative programme. 2 The Department of Health (DH) subsequently acknowledges: The DH contributed to the initial development of the audit tool and is pleased to see it progressing. It is keen that any further development, or adoption, of the tool continues to be led by Quality Neurology and its partners, ensuring that service users and their carers are at the centre of the process. The QN audit tool breaks down the evidence-based markers for each of the 11 QRs of the NSF into auditable statements. Services can be evaluated as met, part met or not met against each criterion of the evidence-based marker. The tool then gives them a red, amber or green (RAG) score against that criterion. The sum of the criteria drives the overall score for the evidence-based marker, which in turn drives the overall score for the QR. It must be emphasised that the answers are reached by a consensus method through open discussion thus ensuring that the audit is not undertaken from a single individual s point of view. 31

32 Appendix 2 Evidence-based markers (EBMs) for the Quality requirements Quality requirement 1: A person-centred service EBM1: There is timely integrated assessment involving all relevant agencies leading to individual care plans which: Cover current and anticipated it needs (including health, social, emotional and cultural needs); Are held by the person and regularly evaluated and reviewed with them by the clinical team. Review is based on clinical need, including self-assessment (see QR2); Ensure that staff has access to all relevant records and background information about the person s condition, test results and previous consultations. EBM2: arrangements are in place to ensure that: All people with long-term neurological conditions have a main point of contact for advice and information. People with complex needs who require skilled input from a number of professionals have a named individual (e.g. a care coordinator, Case manager or community matron) who is responsible for coordinating the input from all relevant agencies and producing a care plan. EBM3: The care assessment and planning process ensures that appropriate services are available to provide support for life transitions and to enable people with long-term neurological conditions to receive continuity of care (e.g. when they transfer to adult health or social care services or across geographical boundaries, or following a change in circumstances such as the death of a carer). EBM4: local arrangements for providing information in sure that: People receive timely, quality assured, culturally appropriate information in a range of formats on: All relevant aspects of service provision; The condition and how best to manage it; Wider social inclusion issues (e.g. employment and transport); Health and social care professionals, people with long-term neurological conditions and carers receive appropriate training on effective ways to provide and use information. Assessment of information needs is part of the review and any interaction with health and social services. EBM5: people with long-term neurological conditions and their carers can access education and self-management programs, tailored to their individual needs and these are available at different stages of the condition. Quality requirement 2: Early recognition, prompt diagnosis and treatment EBM1: there is improved access to specialist neurological expertise through: Training for frontline staff to improve recognition of neurological symptoms Shared protocols for referral for further specialist assessment so that people receive appropriate priority within locally agreed target times. The guidelines on the management of genetic disorders include referral to genetic services. 32

33 Multidisciplinary neurology clinics run in hospital and community settings where possible: Communication routes for GPs to obtain a rapid specialist neurological advice about urgent clinical problems. EBM2: Diagnostic services are effectively designed and have sufficient capacity to enable prompt diagnosis. Services should be delivered according to NICE guidelines and take account of agreed national guidance and protocols for delivering diagnoses, using staff trained in delivering bad news. EBM3: there is improved access to appropriate treatments and: Treatment available to people includes all those approved by NICE. Early integrated assessment and care planning ensure timely access to treatment and to multidisciplinary support, if necessary before diagnosis is confirmed. Individuals receive the appropriate information before starting medication to enable informed choice and are supported to manage side-effects or any other problems they may be having. EBM4: Or people with long-term neurological conditions have prompt access to on-going specialist neurological advice and treatment. Specialist nurses and practitioners with specific knowledge of long-term neurological conditions are available to support people in the community. EBM5: There is improved access to treatment review that ensures: Processes are in place to provide review and monitoring of treatment appropriate to individual need; People taking medicines on a long-term basis have access to regular medication reviews to enable them to get the most out of treatment. To some people, especially those taking three or more medicines, it may be appropriate to have a face to face the review. Quality requirement 3: Emergency and acute management EBM1: acute and emergency management of sudden onset of neurological conditions complies with NICE guidelines and takes into account the nationally agreed standards and guidelines. EBM2: local hospitals except in people with a neurosurgical or neurological emergency have appropriate resources to treat, manage and review individuals presenting with a sudden onset of neurological condition, including Trained staff/teams (A&E, medical assessment, acute medical, neurological) to ensure that people with acute neurological symptoms receive prompt neurological assessment; Appropriate facilities and links to a specialist in neuroscience centre and spinal cord injuries Centre for prompt expert opinion if necessary; Protocols of care agreed with specialist spinal cord injury, neuroscience and neuro rehabilitation centres. EBM3: There are protocols in place which comply with NICE guidelines on head injury and take account of nationally agreed standards and guidelines, the people with acquired brain injury not admitted to hospital. EBM4: transfer to specialist centres is available when needed, and: Specialist neuroscience centres and spinal cord injury centres have the capacity, staff and facilities to accept prompt transfer of people who need more specialist management and to conform to national standards, 33

34 Protocols are in place to support prompt transfer of people to district all local services when specialist intervention is no longer needed. EBM5: Local hospitals admit people transferred from specialist neuroscience centres to suitable wards or facilities where any necessary on-going neurological care, supervision or rehabilitation can be appropriately provided, involving senior specialist medical staff and other staff with neurological expertise. Quality requirement 4: Early and specialist rehabilitation EBM1: rehabilitation is provided which complies with NICE guidelines and takes account of other nationally accepted guidance. EBM2: there is improved access to rehabilitation and: Rehabilitation is provided: Early, At high intensity appropriate to need, By a co-ordinated interdisciplinary team, In an appropriate specialist setting, and On an on-going all the accessible basis to people with changing needs, With specialist equipment (including wheelchairs and seating support systems) where required, Trained rehabilitation, nursing or allied health professional staff support people to apply the skills acquired during therapy sessions in routine daily living activities, The person, their family and the rehabilitation team all work towards the same agreed goals, Inpatient rehabilitation programs are followed by on-going rehabilitation and support in the community for those who need them. EBM3: Seamless transition of care is provided through: Integrated working with other healthcare professionals/teams, In reaching/outreach arrangements between: Specialist neuro-rehabilitation and acute care services; and In patient and community-based specialist neuro-rehabilitation services. EBM4: Specialist rehabilitation services are provided to meet the needs of people with very severe and complex disabilities, including: Profound and complex disabilities (e.g. vegetative or low awareness states, high or complete spinal cord injury or severe brain injuries); Severe cognitive and behavioural problems needing a structured environment; Other long-term medical problems needing intervention. Quality requirement 5: Community rehabilitation and support EBM1: there is improved access to community rehabilitation through: Flexible, individualised programs and community rehabilitation and support which are focused on individual goals beyond a basic daily care and to promote participation in a full range of life roles; Interventions provided according to individual need may include: Rehabilitation and support centred on the person s home and environment, Holistic outpatient or day rehabilitation programs. 34

35 EBM2: local multidisciplinary rehabilitation and support are provided in the community by professionals with the right skills and experience, and: Involve health and social services working together; Include access to specialist neurological expertise (e.g. neuro-rehabilitation, neuropsychology) to address the full range of practical and emotional challenges; Are available in the longer term based on clinical need. EBM3: providers of community rehabilitation and support services support people and their family members and carers to: Live with a long-term neurological condition; Develop knowledge and skills to manage their condition; Achieve a sense of well-being and make long-term psychological adjustments to altered personal, family and social circumstances; Provide proactive intervention, where relevant, to maintain function and prevent deterioration as the condition progresses. Quality requirement 6: Vocational rehabilitation EBM1: coordinated a multi-agency vocational rehabilitation is provided which takes account of agreed national guidance and best practice. EBM2: local rehabilitation services are provided at which: Address the occasional needs during review of a person s integrated care plan and as part of any rehabilitation programme: Work with other agencies to provide: Vocational assessment: Support and guidance on returning to all remaining in work; Support and advice on withdrawing from work; Refer people with neurological conditions who have more complex occupational needs to specialist the occasional services EBM3: specialist the occasional services are provided for people with neurological conditions to address more complex problems in remaining in the all returning to work or alternative occupation including: Specialist vocational assessment and counselling; Interventions that job retention, including workplace support; Specific vocational rehabilitation or work preparation programs; Alternative occupational and educational opportunities; Specialist resources for advice for local services. EBM4: specialist vocational rehabilitation services routinely evaluate and monitor long-term occasional outcomes, including the reasons for failure to remain in employment. Quality requirement 7: Providing equipment and accommodation. EBM1: Assistive technology/equipment is provided and maintained in accordance with nationally agreed standards and guidelines. EBM2: people with long-term neurological conditions have access to integrated community and specialist assistive technology/equipment services which work closely with neurology and rehabilitation services to provide, 35

36 Specialist assessment and advice to help them select the most appropriate assistive technology/equipment for their needs and lifestyles; Support in using direct payments the equipment and vouchers for wheelchairs; Assistive technology/equipment to maintain their health, help with their care, and support independence; More specialist equipment on temporary loan or trial; Systems for tracking and recycling equipment to increase cost efficiency or temporary provision; Regular and on-going review of their assistive technology needs, especially in response to changing need, including the needs of their carers, where appropriate. EMB3: Assistive technology/equipment needs are documented in a person s integrated care plan. EBM4: there are specific arrangements the joint funding of specialist assistive technology provision (e.g. communication aids electric standing frames and special seating aids). EBM5: social services work closely with housing/accommodation and Supporting People services to provide timely, suitably adapted or purpose-built accommodation. Quality requirement 8: Providing personal care and support EBM1: health and social services work together to provide the full range of accommodation, care and support options and facilities to maximise choice, and Where day or residential care or supported living is provided it, they are in suitable settings or people with neurological conditions. EBM2: care in all settings is provided by appropriately trained nursing, therapy and care staff with experience in managing long-term neurological conditions; and Care staff receives support and advice from community rehabilitation and support providers and other specialist neurological, palliative care and rehabilitation services as appropriate. EBM3: health and social care services work together to provide programmes of care that help the person to remain as independent as possible as their condition progresses. EBM4: people with long-term neurological conditions have equitable access to services and assessments based on many health and social care support (with prompt reassessment when needs change), and are supported in the applying for: Direct Payments, to increase their control and choice over their care; Fully funded NHS continuing care that takes account of the particular needs of long-term neurological conditions, including physical, communication, cognitive, the failure will and emotional problems, Adult social care delivered under the Fair Access to Care Services scheme based on need; Help from the Supporting People Program which provides housing related support for vulnerable people; and Staff administering these assessments and schemes are aware of the particular needs of people with neurological conditions (e.g. for social inclusion, independent living, preventative care). 36

37 Quality requirement 9: Palliative care EBM1: specialised numerology, rehabilitation and palliative care multidisciplinary teams and providers work together to provide care for people with advanced long-term neurological conditions. EBM2: people with advanced long-term neurological conditions have access to specialised and generalised palliative care services which support them in their home or in a specialised setting according to their choice and needs and in line with national best practice guidelines, and Specialised neurological and community rehabilitation services provide support, advice and training for all staff delivering palliative care in the community. EBM3: staff providing care and support in the later stages of a long-term neurological condition have appropriate training so that: Neurologists and neurological rehabilitation teams are trained in palliative care skills. All staff providing care for people in the advanced stages of neurological illness is trained in both the management of long-term neurological conditions and palliative care. Quality requirement 10: Supporting the family and carers EBM1: carers of people with long-term neurological conditions: Can choose the extent of their caring role and the kinds of care they provide, Are offered an integrated health and social care assessment at diagnosis and all future interactions, together with information that addresses their needs; Are offered a written care plan agreed with them and reviewed regularly; Have an allocated contact person. EBM2: Involving carers is part of the planning process so that: All carers are treated as partners in care and helped to acquire appropriate skills to support them in their caring role, including how to move and handle the cared for person and how to use equipment to help in daily living. Carers are given the opportunity to work in partnership with specialist teams. EBM3: A range of flexible, responsive and appropriate services is provided for all carers which: Deals effectively with emergency situations, Can support highly dependent people at short notice; Provide appropriate support of the children in the family; Provides carers with breaks across a range of settings; Is culturally appropriate (e.g. to the needs of black and ethnic communities). EBM4: Carers who need help to adjust to changes especially of the cognitive or behavioural kind have access to support based (where appropriate) on a whole family approach and delivered (where necessary) on a condition specific basis and in partnership with the voluntary sector; and Current service models are evaluated to inform future good practice. EBM5: staff working with people with long-term neurological conditions receive care that awareness education and training which involves cavers in planning and delivery. 37

38 Quality requirement 11: Caring for people with neurological conditions in hospital or other health and social care settings EBM1: whenever the person is managed in a non-neurological setting (e.g. a general hospital wards or care facility). The integrated neurological care plan is available for all staff; There is a close liaison with their usual neurological care team EBM2: Arrangements are in place to ensure that neurological needs can be met in all settings: Planned admission: There are preadmission interviews to establish any special needs, including equipment provision, communication aids and transport. Emergency admission: Protocols are in place for liaison with: A person s community care team; and Any relevant specialist team (e.g. neurosciences centre or SCIC). There is evidence of appropriate consultation between teams. EBM3: There is effective consultation with the person about their management and, where appropriate, involvement of the family/carers who are familiar with the person s care needs; and Interpreters are available for people who need them. EBM4: specialist neurosciences, rehabilitation and spinal cord injury services are involved in providing advice and training for staff in general hospitals and other care settings. 38

39 References 1 Department of Health (2005) The National Service Framework for Long Term Conditions, HMSO London. 2 The Quality Neurology tool was created collaboratively by the Motor Neurone Disease Association, Parkinson s UK, the Multiple Sclerosis Society and Ataxia UK, with support from York University Research and Social Policy Unit, and funding assistance from the Department of Health. 39