British Psychological Society response to the Scottish ... · further development of a local...

Neurological conditions national action plan 2019-2024: draft for consultation British Psychological Society

February 2019

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British Psychological Society response to the Scottish Government

Neurological conditions national action plan 2019-2024: draft for consultation

The British Psychological Society, incorporated by Royal Charter, is the learned and professional body for psychologists in the United Kingdom. We are a registered charity with a total membership of just over 50,000. Under its Royal Charter, the objective of the British Psychological Society is "to promote the advancement and diffusion of the knowledge of psychology pure and applied and especially to promote the efficiency and usefulness of members by setting up a high standard of professional education and knowledge". We are committed to providing and disseminating evidence-based expertise and advice, engaging with policy and decision makers, and promoting the highest standards in learning and teaching, professional practice and research. The British Psychological Society is an examining body granting certificates and diplomas in specialist areas of professional applied psychology. Publication and Queries We are content for our response, as well as our name and address, to be made public. We are also content for the Scottish Government to contact us in the future in relation to this inquiry. Please direct all queries to:-

Joe Liardet, Policy Advice Administrator (Consultations) The British Psychological Society, 48 Princess Road East, Leicester, LE1 7DR Email: [email protected] Tel: 0116 252 9936

About this Response The response was jointly led on behalf of the Society by: James Anderson CPsychol, Division of Neuropsychology With contributions from: Dr Fiona Summers CPsychol, Division of Neuropsychology Dr Jackie Hamilton CPsychol, Division of Neuropsychology Dr Breda Cullen CPsychol AFBPsS, Division of Neuropsychology Dr Sarah Gillanders CPsychol AFBPsS, Division of Neuropsychology Dr Susan Copstick CPsychol AFBPsS, Division of Neuropsychology We hope you find our comments useful.

Kathryn Scott Director of Policy, British Psychological Society

mailto:[email protected]


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British Psychological Society response to the Scottish Government

Neurological conditions national action plan 2019-2024: draft for consultation

Our Vision, Scope and Approach Everyone with a neurological condition will be able to access the care and support they need to live well, on their own terms. Do you agree with the overall Vision?

1.

Yes No

X

Do you agree with the decision to maintain a broad view of neurological conditions rather than include every neurological condition by name in the plan?

2.

Yes, I agree No, I disagree

X

There is separate work by Scottish Government considering how best to support children and young people with disabilities and their families, so we decided to consider the needs of people who are 16 years and older in the plan. Do you agree with this decision?

3.

Yes, I agree No, I disagree

X

Developing the National Action Plan involved a range of activities to make sure we identified the right priorities. Do you think we included the most important priorities in the plan?

4.

Yes No

X


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If you would like to make any comments in relation to any of the questions above, please do so here.

5.

Ensure people with neurological conditions and their carers are partners in their care and support Commitments 1 – 3 Aim A Ensure people with neurological conditions and their carers are partners in their care and support. Do you agree with Aim A?

6.

Yes No

X

Commitment 1

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. Do you agree with this commitment?

7.

Yes No

X


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Commitment 2

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. Do you agree with this commitment?

8.

Yes No

X

Commitment 3

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. Do you agree with this commitment?

9.

Yes No

X

If you would like to make any comments in relation to Aim A and Commitments 1 - 3, please do so here.

10. We welcome reference to those with neurological conditions as partners in care and support. However, an area of potential concern are the terms ‘self-management’ and ‘sign-posting’ which are not clearly defined for a neurological population. Those with neurological conditions often have significant issues with fatigue, cognitive function, mood, memory and


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financial, social and mobility difficulties. These issues also unnecessarily impact on careers. Therefore we believe that sign-posting and self-management would be better thought of as requiring to be ‘supported’. This means that resources may need to be provided and individuals taught directly or coached to use existing resources or directly assisted to access community or third sector groups. We recognise that this plan will be delivered at a local level and ensuring that there is a commitment to provide the appropriate support to individuals to access self-management is crucial to allow the best use of any additional community, social and support resources.

Improve the provision of co-ordinated health and social care and support for people with neurological conditions Aim B Improve the provision of co-ordinated health and social care and support for people with neurological conditions. Do you agree with this aim?

11.

Yes No

X

Commitment 4

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. Do you agree with this commitment?

12.

Yes No

X

Commitment 5 We will work 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.


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Do you agree with this commitment?

13.

Yes No

X

Commitment 6 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. Do you agree with this commitment?

14.

Yes No

X

Commitment 7 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. Do you agree with this commitment?

15.

Yes No

X

Commitment 8

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.


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16.

Yes No

X

Commitment 9 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. Do you agree with this commitment?

17.

Yes No

X

Commitment 10

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. Do you agree with this commitment?

18.

Yes No

X

If you would like to make any comments in relation to Aim B and Commitments 4 - 10, please do so here.

19. For those working with people with neurological conditions, the lack of integration of services and the way that difficulties in one area can magnify difficulties in another are ever present. Likewise, a reactive approach where a change in condition (even when those changes are


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predictable) then triggers a change in service provision which can be deeply disruptive to individuals. Therefore, we would welcome any move to a more proactive and anticipatory model. Commitment 4 seeks to “…ensure legislation, policy and guidance recognises the complex needs…” We would recommend a stronger statement as much of this guidance already exists. We believe that there is sufficient and good guidance, but what we lack is either the mechanism to enact it, or even, a consensus at board level at times. For example, SIGN neurological standards are highly regarded and are clear about what is practically required for various conditions and good care. We accept that the action plan desires not to be condition specific. However, we would welcome a commitment that seeks to establish the inclusion of existing guidance and policy, as that which both guides service development, and is the standard against which individual boards should be measured against. There is currently discussion on new models of community provision both for rehabilitation and functional neurological disorders (Action Plan Consultation Document, paragraphs 38, 39, 40). While these are to be welcomed, we are concerned about the lack of reference to which health professionals would constitute these teams. We would also welcome more detail on how they would work and how the members of this team would be determined. We would welcome a commitment to these service so that they will be guided by the existing evidence base, policy and outcomes judged against the same. We also believe that there is a lack of definition in the terminology used. For example, rehabilitation, multi-disciplinary teams, neurology keyworkers or therapy are all undefined. We are concerned that in the absence of these clear requirements and definitions, people with neurological conditions will not be offered appropriate services that are staffed by appropriate individuals matched to the user’s needs. We are further concerned that inappropriate or inadequate services will be created that purport to offer rehabilitation (or some other neurological service) when in fact they cannot do so. Therefore, clear reference as to who constitutes an MDT, what neurological rehabilitation entails or binding references to documents where these are defined would immeasurably strengthen services and service development.

Ensure high standards of effective, person-centred, and safe care and support Commitments 11 – 13 Aim C

Ensure high standards of effective, person-centred, and safe care and support. Do you agree with this aim?

20.

Yes No

X


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Commitment 11

We will promote and support the implementation of the Healthcare Improvement Scotland General Standards for Neurological Care and Support 2018. Do you agree with this commitment?

21.

Yes No

X

Commitment 12

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.


22.

Yes No

X

Commitment 13

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.


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23.

Yes No

X

If you would like to make any comments in relation to Aim C and Commitments 11 - 13, please do so here.

24. The Society welcomes the standard, however some of the comments made so far are also applied to the Neurological Standards (Commitment 11). We believe that there is a lack of definition in terminology e.g. timely, holistic, effective, appropriate teams, and appropriate needs. We would welcome a person-centred assessment. We believe that in the absence of those definitions, meaningful change and measurement is difficult. We also believe that in the absence of clear measurement tools or standards, comparison between organisations will be made a lot more difficult. This may be further compounded by the fact that organisations could choose to demonstrate their meeting of the standards in various ways; that may not necessarily link to improved patient outcomes. We are concerned that there is no reference to psychological function. In commitment 12, we would welcome a clear statement that outcome measures should also explicitly address psychological and neuropsychological function and quality of life. While it is difficult to measure these are perhaps the most powerful measures of whether a truly integrated and person centred service for those with neurological conditions exists.

Improve equitable and timely access to care and support across Scotland Commitments 14 – 15 Aim D Improve equitable and timely access to care and support across Scotland. Do you agree with this aim?

25.

Yes No

X

Commitment 14

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


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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


26.

Yes No

X

Commitment 15

We will work with the Scottish Atlas of Variation Group to explore developing an Atlas on neurological conditions. Do you agree with this commitment?

27.

Yes No

X

If you would like to make any comments in relation to Aim D and Commitments 14 - 15, please do so here.

28. The Society welcomes the general commitments. Commitment 14; we welcome the intention to develop national and regional pathways. We are also concerned that particular services (medical and hospital based neurophysiology services) were cited as requiring to be developed. As in previous comments any DCAQ planning should apply to all areas of neurological conditions and services; not just medical services and should be guided by existing standards to ensure appropriate services are delivered. The identification of medical services (and principally epilepsy services) in this commitment seems to go against the inclusive nature of the document. Also, in this standard is mentioned (point 51.) is the increasing demand of neuropsychology services. While this is something we welcome and believe is crucial, we would strongly recommend that DCAQ approaches would consider all specialties.


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While we believe that appropriate provision of neuropsychology services to patient outcome is crucial, there is a risk that appropriate provision is not made for other staff groups with associated impacts on users. We believe that this could be rectified by a clear commitment and definition as to what staff groups are required or links to established policy and guidance as to what is required in terms of workforce or services.

Build a sustainable neurological workforce fit for the future Commitments 16 - 17 Aim E Build a sustainable neurological workforce fit for the future Do you agree with this aim?

29.

Yes No

X

Commitment 16

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. Do you agree with this commitment?

30.

Yes No

X

Commitment 17 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


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social care and support workforce for those working with people with neurological conditions. Do you agree with this commitment?

31.

Yes No

X

If you would like to make any comments in relation to Aim E and Commitments 16 - 17, please do so here.

32. Both commitment 16 and 17 have a strong focus on neurology and neurophysiology. While we recognise the importance of these professions, we believe that the goals specified cannot be met unless a similar degree of effort and concern is expended on the wider workforce. We therefore are concerned that neuropsychology is not specifically mentioned (along with medical, AHP and neurophysiology) as being a crucial part of the workforce. Likewise in point 17, there is the desire to work closely with stakeholders. As a key part of neurological provision in Scotland and key to delivering aspects of supported self-management, intervention for mood, cognitive assessment and rehabilitation, we are concerned that there is no neuropsychology representation in either the standards or action plan.

Implementation of the plan We want the plan to be implemented successfully and to be able to measure success.

Please provide comments or suggestions on the implementation of the plan here.

33. The Society welcomes the plan and its intended outcomes. However, our concern remains that while the intention and strategic direction is clear, the plan may fail where there is a lack of clarity in the definitions, a lack of clear inclusion of who is required professionally, or what services should look like or be required to deliver. There is also a lack of clarity in how change will be measured. We also have concerns that the mark of success will essentially be self-certification, which may not translate to actual change in the experience of those with a neurological condition and their families.

What is the most important thing we need to change to improve the NAP?

34. We would recommend that a clearer reference to existing clinical guidance and standards as part of what should be implemented and used as measurement.


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We would welcome a clearer definition of some of the terms used in the document so providers are aware of a core set of necessary staff (e.g. staff in an MDT, what professions would be needed to constitute a neurological service), what constitutes particular services (e.g. rehabilitation) and what outcomes would be expected from those services to allow consistent measurement. Clear consideration should be given to using measurement tools to measure mood, mental health, adjustment, cognitive function and quality of life factors to ensure the plan delivers on its goals. We believe that ensuring a representative group of professionals, including neuro-psychological representation is crucial. This seems particularly lacking when many of the action plan’s goals are psychological in nature. Finally, the contextual information is often quite rich. While that cannot all be included in the commitments some reference to the commitments being considered alongside the contextual information would be valuable. For example, the context around workforce gives much greater weight to consider all services and professions, rather than the commitment which seems unduly medical.

If you have any other comments or suggestions please make them here.

35. We believe that greater emphasis on the mental health and neuropsychological impact of these conditions is needed, at all stages of the patient pathway. Due consideration needs to be given to depression, cognitive issues, adjustment and daily functioning, risk to self and safety issues and monitoring of change over time. This necessitates appropriate psychological and neuropsychological assessment to assist in neurological diagnosis and treatment planning at all points and appropriate rehabilitation and psychological assessment and treatment including the provision of talking therapies.

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