Aims and commitments
A: Ensure people with neurological conditions and their carers are partners in their care and support
27. People told us they wanted to focus on personal outcomes and to be partners in their care and support. Some people gave good examples of personalised care from clinical nurse specialists, therapists, and their GP. Others found helpful information and support from charities or online. Others described receiving excellent support from community carers. People described positive experiences when they found information, were involved in decision making, or were helped to achieve their goals.
28. Data from the Lived Experience showed that while some people may feel listened to, other people perceived a lack of understanding on the part of clinicians, practitioners and other staff. People described lack of understanding of their condition, a lack of information on what care and support are available for them and their carers, and a lack of consideration of what matters most to them.
We will support the development of shared decision making and personalised models of care and support for people with neurological conditions and their carers, including self-management support where appropriate in all services; and work with the Health and Social Care Alliance to identify shared learning from projects funded through the Self-Management Fund.
We will work with NHS Inform, and stakeholders across the Neurological Community to improve the information available on neurological conditions, awareness of the NHS 24 Care Information Scotland resource, and support the further development of a local Information System for Scotland (ALISS) as a national resource for sign-posting people with neurological conditions to care and support.
29. People also told us that staff were sometimes reluctant to share information with peoples’ families and carers and that their carers were not given the information or help they needed. People and their carers asked for training in using equipment and carrying out more technical interventions such as using hoists, feeding through a tube, and non-invasive ventilation.
30. We acknowledge the key role of unpaid carers and the need to support their health and wellbeing.
The Carers (Scotland) Act 2016 introduced new rights for carers to support, information and advice, designed to make caring more sustainable.
We will work with stakeholders including third sector organisations and local carer information and advice services to develop approaches to enable improved access to training materials that will support carers as required under the Carers Act, in addition to working to make carers of people with neurological conditions aware of their new rights to support. We will work with stakeholders, including carers and local carer information and advice services to explore the need and potential delivery routes for further support to carers in the use of equipment and interventions to support those with neurological conditions, for example through the development of guidance on the content and delivery of training programmes for unpaid carers. We will encourage the involvement of people with neurological conditions and their carers in the development of Integration Authorities’ local carer strategies.
B: Improve the provision of co-ordinated health and social care and support for people with neurological conditions
31. We know that the current model of primary, secondary and tertiary care works well for some people with neurological conditions, who are able to be referred to specialist teams, and can benefit from new therapies and medicines.
32. However, for others the current structure creates barriers to people accessing care and support when and where they need it, whether due to waiting times for appointments, the need to travel long distances to attend a specialist neurology clinic, or differences between referral and prioritisation criteria for housing adaptations, respite care, and provision of specialist, personalised equipment.
We will work to ensure legislation, policy and guidance recognises the complex needs of those living with disabilities due to neurological conditions, and those of their carers. This should enable Integration Authorities - taking account of local accountability and priorities - to reduce inequalities and variation in the provision of care and support services, prioritisation of referrals, respite care and provision of bespoke equipment.
33. Through the Lived Experience project and the national engagement events, we heard that some people experienced a lack of “joined up” care. People described a lack of co-ordination between different teams, and disjointed care between care providers, statutory, third and independent sectors. There was a clear message that we should improve communication among care and support professionals and between professionals and others.
34. We also heard from young adults with neurological conditions, and their families, about the difficulties experienced when moving/transitioning from Children and Young Peoples services to Adult Services.
We were given examples of less frequent review appointments, lack of access to therapy, and the need to establish relationships with a new care team. For older adults, moving into a suitable care home was difficult - as residential care for people with a complex neurological condition was not always available locally.
We will work with key partners such as the Disabled Children and Young Peoples Advisory Group and other stakeholders to develop policies and procedures for good transitions for people living with neurological conditions.
35. We value the critical role of third sector organisations as key partners in developing, delivering and trialling new services and look to actively support them in creating a sustainable environment, particularly in areas where these organisations may be best placed to deliver services and support.
We will work with COSLA; local partners in social services, the wider health and social care landscape and in housing; communities; people with care needs and carers; and others to support local reform of adult social care. We are currently developing a national programme for this work together, which will include publishing a refreshed implementation plan for self-directed support. We will also look to actively support third sector organisations as key partners by striving to create a sustainable environment for the care and support they provide.
36. We recognise the need to harness digital technology as a means of improving communication and overall care for people with neurological conditions. This ranges from better use of technology across care and support services, to improving the availability of information to people with neurological conditions, their families and carers, whether through shared records, person-held records or other initiatives to improve communication. There has been significant progress across services in the development and roll-out of innovative approaches to video-appointment systems such as Attend Anywhere, and out-patient booking systems that allow people to book an appointment at a time that suits them. We want to encourage the extension of these approaches in services for people with neurological conditions.
We will support the use of technology and the exchange of digital information between people with neurological conditions and those who provide care and support, and within and between Integration Authorities and Boards, through the extension of the national initiatives described above.
37. We also heard about the need to share information between members of care teams, and the importance of anticipatory care plans for some people with neurological conditions. A national programme that supported the implementation of anticipatory care plans and the development of an infrastructure concluded in June 2018, and an anticipatory care planning approach is now being embedded across all areas of work in Healthcare Improvement Scotland and the Living Well in Communities Programme.
We will work with Healthcare Improvement Scotland to promote the development of anticipatory care planning approach by NHS Boards and Integration Authorities, to ensure these are widely available to people with neurological conditions.
38. Many people with neurological conditions experience deterioration in their condition over time. Services need to develop a more proactive approach to offering information, care, support and rehabilitation to people that enables them to maintain their independence, health and wellbeing. There is a need to develop and test different community based neurological rehabilitation models with expertise in neurological (rather than disease specific) rehabilitation and therapy, that can proactively provide care and support to people with a wide range of neurological conditions. Model teams could include generic neurology keyworkers as well as clinicians and practitioners with advanced skills, and need to be tested in both rural and urban settings.
39. Some neurological symptoms (e.g. headache, tingling hands/feet, dizziness) are extremely common and rarely caused by serious underlying disease. Yet they cause concern and anxiety for people, and represent a significant proportion of primary to secondary care referrals, either routinely or urgently. It is questionable whether this is the best way to support people with these symptoms, and so we propose to test projects that assess and support people with common neurological symptoms. Similar models already exist for other conditions (e.g. integrated back pain services led by Advanced Physiotherapy Practitioners).
We will support Integration Authorities to improve services and support for people with neurological conditions, with a commitment to evaluation and testing of generic / neurology community based multi-disciplinary team models and testing of innovative ways of delivering health and social care to people with neurological conditions, including new roles and new arrangements for co-ordinating care and support.
We will work with Healthcare Improvement Scotland’s Improvement Hub to review neurological rehabilitation care and support across Scotland, identifying aspects of good practice and integrated models of care.
40. There is also potential to explore whether existing community based models of care and support such as those used in some specialist neurological services, acquired brain injury, stroke and dementia could be enhanced and extended to those with other neurological conditions.
We will work with the Neurological Alliance of Scotland, and other stakeholders, to explore the potential of National Care Frameworks - such as that used by the Scottish Huntington’s Association - and how these can inform neurological care.
C: Ensure high standards of effective, person-centred, and safe care and support
41. Healthcare Improvement Scotland have recently revised its 2009 Neurological Services Clinical standards. The new publication Healthcare Improvement Scotland General standards for neurological care and support: Draft Standards September 2018 supports the development of joined-up health and social care, and reflect the National Health and Social Care Standards.
42. The new standards for neurological care and support apply to anyone living with a neurological condition in Scotland. Organisations will use the standards to demonstrate that they are delivering high quality services. The standards set out the same high level of care and support for all adults regardless of condition, geographical location, service provider, or an individual’s personal circumstances.
43. Scottish Government has worked with Healthcare Improvement Scotland to support the development of the standards through a shared ethos in bringing the greatest benefit to all people living with neurological conditions, regardless of their diagnosis.
We will promote and support the implementation of the Healthcare Improvement Scotland General Standards for Neurological Care and Support 2019.
44. The Scottish Burden of Disease project ranked neurological conditions as fifth in terms of years lost owing to early death or living in less than ideal health (disability-adjusted life years, DALYs), representing 10% of the overall DALY score in Scotland.
45. However, through our work with NHS Information Services Division we concluded that it is not currently possible to identify exactly how many people there are in Scotland living with a neurological condition. We have a series of estimates for some (but not all) conditions, some more accurate than others; thus we do not underestimate the challenge we face regarding basic epidemiological data.
46. Neurological conditions affect everyone in different ways, and, also cause differences in health, independence and wellbeing over time. These differences make it difficult to find a way of measuring what type of treatment, care and support works best.
47. However, we know the use of outcome measures that are meaningful to everyone is paramount in the case of people with neurological conditions, so that they can decide what treatment, care and support will work best for them. The choice of measures for monitoring the outcomes of the implementation of the national action plan is similarly complex.
48. The development of linked data to support Health and Social Care Partnerships is a key project for NHS Information Services Division Scotland.
We have some data available for the neurological population in Health and Social Care Partnerships, and further data will be available in the next year from the Scottish Care Home Census.
49. We will be better able to understand people’s interaction with services as the data develops. This will inform future planning of services based on need, and provide a way of measuring performance and outcomes.
We will work with NHS Information Services Division and others to:
- understand the gaps in prevalence, and how best to improve the data.
- enhance capture of already routine collected data.
- further develop systems and processes that support service planning and workforce development based on this information.
- explore the feasibility of developing a national reporting framework that includes key performance indicators for neurological care and support and measures improvements in care and support.
- explore the feasibility of developing effective measures of experience and outcome of person centred care and support, for people with neurological conditions.
50. Health and social care and support need to be effective. Ensuring effectiveness implies a willingness to learn from user feedback and service reviews, participation in development and improvement activities, a willingness to consider new paradigms, and apply new findings from research. Scotland has a proud history of research, and we wish to encourage ongoing research within the Neurological Community, alongside other development and improvement activities.
We will support the neurological research agenda, promoting the work of the Chief Scientist Office and the Scottish Neuro-progressive and Dementia Research Network, and opportunities for people with neurological conditions to become involved in research trials; highlighting the need for further qualitative research on the impact of living with a neurological condition and on the identification of outcome measures that are meaningful to people who use care and support services that could be used across the Neurological Community.
D: Improve equitable and timely access to care and support across Scotland
51. Over the past 10 years there has been increasing demand on hospitals for neurology, neurophysiology, neurorehabilitation, neuropsychology and therapy services. There is also significant demand on care and support services provided by Integration Authorities.
52. Over the past 10 years there has been a 13% increase in the total number of residents in a care home for adults with physical disabilities, against a backdrop of a slight reduction in registered care home places.
This suggests that there are challenges in providing care and support for people with physical disabilities, many of whom will have a neurological condition, and in enabling them to remain in their own home.
53. The Scottish Access Collaborative is working to sustainably improve waiting times for patients waiting for non-emergency procedures and will shape the way services are provided in the future.
54. We have convened a Neurology group within the Scottish Access Collaborative, and this work, in conjunction with The Modern Outpatient document, should lead to better referral guidelines and care and support pathways for people with neurological symptoms across Scotland.
We will seek to improve access to Health and Social Care and Support by working with the Scottish Access Collaborative for Neurology to develop nationally agreed, regionally and locally applied guidelines for services and referral pathways for neurological conditions; and work with stakeholders on the development of a national or regional approach to access to services based on DCAQ (Demand, Capacity, Activity and Queue) for hospital neurology and neurophysiology services. In particular we will encourage NHS Boards and Integration Authorities to consider introducing/strengthening current provision for commonly accessed services including:
- open access clinics for suspected new epilepsy / first seizure patients, that accept referrals from patients, emergency departments and GPs
- rapid access neurology clinics
- pilots of community based teams for dealing with common neurological symptoms
55. Mapping Neurological Services in Scotland 2017/18 confirmed considerable variation in access to services depending upon local services, pathways and geography. We also heard from people with neurological conditions that the services they received varied depending on the condition they had, and on the types of services available in their local area. Some people reported that they received excellent care, however people with other conditions reported long periods of anxiety while waiting to access services and get a diagnosis, and a lack of support for managing their symptoms following diagnosis.
56. The Scottish Atlas of Variation aims to highlight geographical variation in Scotland’s population health, the provision of health services and associated health outcomes. The Atlas will facilitate discussion and raise questions about why differences exist and help to promote quality improvement through conversation. In time, the Scottish Atlas of Variation will be an important tool to help identify and eliminate unwarranted variation, and to support the reduction of harm and waste within healthcare.
We will work with the Scottish Atlas of Variation Group to explore developing an Atlas on neurological conditions.
57. Variation in care is not confined to health services. We also heard about care and support services not being accessible to people in neighbouring localities because of partnership boundaries, of differences in funding essential equipment, and lack of access to therapy services due to place of residence. We need to remove barriers to improve access to care and support so that people can move easily between acute and community, and move in and out of services as appropriate to their needs, and at the right time.
E: Build a sustainable neurological workforce fit for the future
58. The delivery of joined up and holistic services requires us to think more widely about ‘workforce’ and those who support the independence, health and wellbeing of people with neurological conditions. Care workers, practitioners and professionals are a huge asset to health and social care and support, therefore it is important to support them in their current roles and in developing new roles. As staff move into new roles we need to be able to model and predict the impact on the changing workforce and the services they provide.
59. During the mapping exercise and engagement events, we heard of gaps in the provision of adequately trained staff to deliver care and treatment. For example, vacancy rates in Consultant Neurologists exceeded 10% of the funded establishment, impacting on services’ ability to deliver timely access to care and support.
We will discuss a national or regional approach to workforce planning with stakeholders, to test the extension of existing workforce planning tools and their application to the wider neurological workforce in Integration Authorities and NHS Boards; supporting review of job plans for Consultant Neurologists and Neurophysiologists to make posts more attractive, while recognising the national approach to consultant contracts. We will support a programme of innovation and the development of a phased approach to implementation where emerging evidence supports changing models of workforce, such as testing new roles of Advanced Practice for nurses, allied health professionals, general neurology keyworkers and healthcare scientists working in neurological care and support services.
60. Medical training is managed at a UK level, the Shape of Training review proposed an important evolution in the development of specialties and their role within provision of healthcare, particularly in the acute sector. The impact of the review on specialties like neurology, and the number of doctors in training in this specialty will not be clear for some time.
61. Meantime, our analysis of consultant vacancy rates and the age profile of the current consultant workforce and neurology training numbers have led us to give active consideration to recruitment; particularly in acute neurology and neurophysiology services.
62. Innovative ways of encouraging applications at consultant level need to be considered. This need not be financially driven - improving study leave provision and training budgets may be one way to enhance the attractiveness of working in Scotland.
63. It would be helpful for staff working in services that do not provide specialist neurological care and support, such as other medical specialties, community teams, or care homes to receive training in understanding the needs of people with neurological conditions and this should be available. There is no national framework for the development of non-medical staff working with people with neurological conditions, whether knowledge or competence based.
64. We support the critical role of third sector organisations in providing services and support. There needs to be consideration as to the sustainability of this workforce, while still recognising the independence of the sector.
65. Feedback from the Neurological Community at our national engagement events identified a need to develop guidance on the use of equipment and interventions e.g. hoists, enteral feeding, non-invasive ventilation, by appropriately qualified staff.
66. Employers are responsible for ensuring their staff have the skills and knowledge to carry out their roles. This responsibility is set out in the Codes of Practice for Social Service Workers and Employers and the Care Inspectorate use the codes in their inspections of services. The National Health and Social Care Standards are also relevant, in setting out what a person can expect from their service provider.
67. Part 2 of the National Health and Social Care Workforce Plan: Part 2 - a framework for improving workforce planning for social care in Scotland. proposes the development of a Framework for Practice in Social Care. This is being led by the Scottish Social Services Council, and will work with stakeholders to consider how such a framework will contribute to ensuring that there are clear routes identified that reflect the development of appropriate expertise in the social services workforce, including for management of specialist conditions.
We will work with stakeholders, in the context of the work taking place under the National Health and Social Care Workforce Plan, to explore how best to further support the development of appropriate expertise in the health and social care and support workforce for those working with people with neurological conditions.