Functional neurological symptoms: Optimising efficacy of inpatient treatment and preparation for change using the Queen Square Guided Self- Help

Objective: Functional neurological symptoms (FNS) are disabling symptoms without macro- structural cause. While inpatient treatment confers important benefits, it is resource- intensive, and hence, it is important to optimise its efficiency. Methods: We developed a brief, Internet- based preparatory therapy based on psych oeducation and CBT, termed the Queen Square Guided Self- help (QGSH), to maxim ise the efficacy of the inpatient FNS treatment at the National Hospital for Neurology and Neurosurgery. Results: The QGSH aims to ensure that prior

Regarding the place of information and learning in treatment, there is significant evidence that the quality of diagnostic explanation impacts the efficacy of treatment (Edwards, 2016) and a substantial minority of patients are symptom-free after the initial consultation alone (McKenzie et al., 2010). Additionally, patients feeling they are believed by their doctor is an important factor in their recovery (Karterud et al., 2015). Patient acceptance of the diagnosis, acknowledgement that emotion may play an important role in symptom production and a stable social environment all increase the chance of a good recovery (Reuber et al., 2005;Rommelfanger et al., 2017).
On the other hand, poor outcomes are associated with expectation of non-recovery, non-attribution of symptoms to psychological factors and receipt of health-related benefits .
Psychiatric comorbidity, particularly personality disorder, is also an important negative predictive factor (Gelauff et al., 2014). This may reflect the difficulty of treatment in the presence of another disorder, and in personality disorders, difficulties with collaboration with treatment.

| The multidisciplinary approach to inpatient treatment
Evidence supports both psychological and physical interventions (Conwill et al., 2014;Demartini et al., 2014;Sharpe et al., 2011), helping to overcome the difficulties from diagnosis to effective treatment that have historically troubled the management of FNS (Greiner et al., 2016). Acceptance of this multidisciplinary approach is illustrated by 55% of neurologists and 88% of psychiatrists favouring a combined treatment in one study (Schipper et al., 2014).
Using a multidisciplinary team (MDT) of health professionals from a range of backgrounds can maximise the impact of each form of therapy by working co-operatively (Demartini et al., 2014;Hubschmid et al., 2015;Jordbru et al., 2014;Saifee et al., 2012). The National Hospital for Neurology and Neurosurgery (NHNN) offers a tertiary care, multidisciplinary treatment package for FNS, whose centrepiece is the inpatient programme.

| The need for guided self-help
While inpatient MDT treatment confers important benefits (Demartini et al., 2014), it is resource-intensive and hence under pressure to minimise its length. The shortening of admissions in

Implications for practice and policy
• The QGSH has the potential to provide significant benefit for patients with FNS • Therapy can be delivered remotely • Clinicians can benefit from the materials and supportive structure • QGSH could be introduced into stepped care for patients with FNS NHNN meant that many patients spent a significant proportion of their admission gaining an understanding of the diagnosis and the rehabilitative approach. Many expected an admission based on 'organic' investigations and medical intervention and had doubts about the biopsychosocial, goal-driven approach and how important selfmanagement would be for effective rehabilitation. By the time a collaborative understanding of FNS has been achieved, there was often little time left for hands-on rehabilitation. Thus, we aimed to develop a preparatory therapy, termed the 'Queen Square Guided Self-help' (QGSH), based on psychoeducation and CBT, and to institute it as a key part of the treatment package so that patients would make the best use of the inpatient treatment.

| ME THODS
We developed the QGSH through (a) considering the multidisciplinary approach that patients needed to learn about, (b) adapting existing guided self-help approaches, (c) incorporating an ongoing process of service evaluation and, finally, (d) aiming to provide the resources we developed to the community.

| Key therapies within the MDT
Our programme comprises the following physical, psychological, occupational, psychiatric and whole-team contributions.
Specialist physiotherapy for motor FNS, which focuses on retraining abnormal movements (Nielsen, 2016), can be highly effective (Nielsen et al., 2013). Significant improvements in physical function and quality of life sustained over follow-up have been seen (Jordbru et al., 2014;Nielsen et al., 2015).
Psychologically, we use cognitive behavioural therapy (CBT) for FNS (Dallocchio et al., 2016) within a broad biopsychosocial approach. The cognitive component aims to modify the patient's unhelpful beliefs in relation to their illness (O'Neal & Baslet, 2018). CBT has been found to be effective in studies looking at both one-to-one settings  and groups (Conwill et al., 2014). A range of psychological therapies have been used for FNS, including brief psychodynamic interpersonal therapy (BPIP; Sattel et al., 2012).
In QGSH, collaborative work in the therapy relationship is crucially informed by a psychodynamic 'lens'. That is, we think about the feelings of both patients and therapists during the work and how they may depend on past experiences, and discuss these in clinical supervision. This is 'lens' rather than 'technique', in that we do not use psychoanalytic interventions such as interpretations.
Occupational therapy for FNS is primarily concerned with function rather than impairment. An in-depth history taken from the individual allows the therapist to place them in the context of their wider biopsychosocial environment. Understanding a person's narrative is essential in planning rehabilitation and recovery (Nicholson et al., 2020). The nursing team also provide the detailed knowledge of a person's presentation throughout the day, which allows for a 24-hr dynamic risk assessment and so supports a therapeutic rehabilitative environment.
Expert psychiatric understanding is also important. Many of the more disabled FNS patients present with a range of functional symptoms in the presence of comorbid 'organic' diseases. A significant proportion present with psychiatric comorbidity and complex biopsychosocial presentations.

| The development of guided self-help
Self-help approaches have been established for many decades in the psychological therapies (2001,2001). These include, for example, bibliotherapy, where patients read recommended books and forms of computerised CBT delivered by CD or DVD or via the Internet. 'Book prescription' schemes where patients can borrow on extended loan specific books via a 'prescription' from a health professional is one way of making bibliotherapy more accessible. In advocating greater accessibility and flexibility in modes of therapy delivery, Lovell and Richard (2000) advocated for Multiple Access Points and Levels of Entry to therapy (MAPLE; Lovell & Richards, 2000). Thus, as well as part of an integrated care package, guided self-help may form one stage in a stepped-care programme. Indeed, NHS Scotland has advocated 'stepped care' for patients with FNS.
Step 1 is diagnosis; Step 2 is a brief intervention; and Step 3 is complex care with a multidisciplinary team (Healthcare Improvement Scotland, 2012).
Cuijpers and Schuurmans reviewed the history of self-help interventions for anxiety disorders and outlined the forms it can take (see Table 1). The only RCT to investigate the efficacy of guided self-help for FNS was performed by Sharpe et al., providing class III evidence.
Participants allocated to the UC + GSH condition showed greater improvement in the CGI with an odds ratio of 2.36 (95% CI: 1.17-4.74, p =.016). There was a 13% absolute improvement in the proportion rating their health as 'better' or 'much better', translating to TA B L E 1 Types of self-help summarised from Cuijpers and Schuurmans (2007) Unguided self-help: Provided by a book or electronically via the Internet or computer programmes. There is no professional support of either the user's understanding of the method or how far to pursue it Self-help as part of face-to-face therapy: Here, it can be used as part of regular treatment with a professional providing the patient with self-help materials to speed up the treatment process or to give them an opportunity to practise components of the therapy independently. For example, self-help sleep-hygiene guides are commonly used in the standard CBT Self-help as an independent intervention: The patient works through a self-help workbook or worksheet with support from a professional at regular times. These are usually brief contacts aimed to provide added explanation about the methods where needed rather than developing a traditional patient-therapist relationship. The capacity for this has expanded significantly with the development of the Internet a number needed to treat of 8. Much of the recent work on GSH has moved to Internet-based approaches, which can amplify the power of GSH.
In this light, the QGSH was developed as a brief therapeutic intervention, which aims to ensure that, prior to admission, the patient understands (a) the diagnosis of FNS and how their own diagnosis has been reached; (b) the five-areas CBT model and has started practising it and (c) the use of goal setting in rehabilitation. The 'fiveareas' approach  consists of (a) Symptoms, (b) Cognitions/thinking, (c) Feelings, (d) Behaviour and (e) Life situation, and focuses on psychoeducation, explains FNS within a biopsychosocial model and teaches goal-oriented self-management to support engagement with the inpatient programme. The most important aim, however, is to develop a collaborative, trusting alliance with the neuropsychiatry multidisciplinary team.

| Service evaluation
In order to improve the QGSH, we developed an ongoing evalua-

| RE SULTS
Patients are referred to the overall FNS service by neurologists and neuropsychiatrists who have established the diagnosis and are first seen in a neuropsychiatry MDT clinic to assess their suitability for treatment. This clinic consists of a neuropsychiatrist, FNS specialist nurse, FNS specialist occupational therapist and an FNS specialist physiotherapist. When they are first seen in this clinic, some patients have accepted their diagnosis, while other patients report they do not recall their diagnosis or reason for referral. The decision to admit is then made collaboratively based on each patient's needs and the MDT assessment.
The referral process is outlined in Figure 1, and the criteria to be considered for treatment are as follows: 1. Definitive diagnosis of FNS by a neurologist.
2. Acceptance of the diagnosis, with no requests for further diagnostic investigations.
3. Willingness to engage in MDT programme.
4. Ability to work with a goal-orientated approach.

No current litigation related to symptoms (though this is on a
case-by-case basis).
The MDT clinic assessment has a number of roles in addition to the usual clinical history taking. The lead clinician must build trust, take an inventory of symptoms and explain the diagnosis and the approach to treatment. During the assessment, interviewers and patients can begin to put together elements of a clinical formulation. For instance, a patient experiencing intermittent leg weakness might disclose a history of trauma with current symptoms of posttraumatic stress disorder (PTSD), so that 'leg buckling' occurs in response to particular triggers.
The patient is encouraged to take responsibility for their own rehabilitation with professional support and guidance. By discussing the treatment programmes on offer, the clinician can gauge the patient's willingness to engage and come up with an estimation of the patient's suitability for treatment. At the end of the assessment, the patients are invited to suggest two or three goals they might like to work on when they start treatment. Patients accepted for the inpatient programme are contacted approximately 10-12 weeks prior to their admission date to start the QGSH.

| The Queen Square Guided Selfhelp programme
The QGSH is a course of Internet-based guided self-help. It runs for up to 12 weeks and includes original videos and patient worksheets, as well as signposting to existing published resources such as Neurosymptoms.org. It involves therapists guiding the patient to use a range of psychoeducational resources and guides to simple therapy activities, supported by one-to-one contact, such as brief telephone calls, at sparse intervals (Cuijpers & Schuurmans, 2007). Resources,

F I G U R E 1 Flow chart showing the referral pathway for the IP program and GSH
including the book 'Overcoming FNS' , are used according to clinical judgement and patient collaboration within a flexible protocol. Information is sent weekly by email, and content is delivered in the form of 11 modules built around video sessions on YouTube (see Table 2). where the patient is encouraged to have a key role: rather than being passively 'handed over' within the treatment team, the patient is encouraged to inform the inpatient clinicians who first meet them what they have learnt and achieved during the preparatory therapy. This is important both for informing the clinicians and, more importantly, for giving the patient a key responsibility for their self-management.

| The GSH modules
Guided self-help videos and worksheets are structured into thematic modules. These are provided to patients electronically and supplemented by phone calls from the GSH therapists. Video clinics are being developed to flexibly replace phone calls. As a patient progresses through available modules, the programme is personalised for each patient by the therapist in terms of module ordering and rate of delivery. This is aimed at providing the best possible experience, while managing the complex needs of this patient group. Each module comprises a video session accessed on YouTube and a set of associated worksheets for the patient to complete. These were produced collaboratively by the therapy team to provide an original set of materials. The worksheets were designed to complement the videos and were based, in part, on the 5-areas approach book , while respecting the copyright permissions given by its authors. The patients were invited to get hold of a copy of the book, and although this was 'optional', most of them did so. We now describe a module that illustrates how a fairly standard CBT approach is finessed to address the needs of this patient group, a philosophy that pervades all preparatory work.
In the 'Anxiety and FNS' module, the basic principles for discussing anxiety are implemented as follows: (a) collaborative case TA B L E 2 QGSH video titles 1. Introductory Session 1: What are functional neurological symptoms? 2. Introductory Session 2-Body, the role of the autonomic system and of stress, stress and symptoms 3. Goal setting 4. Introduction to the 5-areas approach (symptoms, behaviour and affect) 5. 5-areas approach-focus on cognitions-thinking and feelings 6. Anxiety and FNS 7. Fatigue and pain 8. Presentation of workings of the inpatient therapies and the MDT 9. Thinking about the self and others: Mentalisation for FNS 10. Mood problems 11. The role of medications 12. Avoidance in FNS conceptualisation, whereby patient and therapist look beyond the list of current symptoms to determine the predisposing, precipitating and perpetuating factors; and (b) collaborative empiricism, whereby patient and therapist pool their experience and knowledge in an ongoing process of generating and testing hypotheses.
Some patients with FNS describe feelings and behaviours recognisable as 'anxiety', but they would not describe themselves as 'anxious', while some symptoms that clinicians recognise as anxiety are simply direct bodily experiences far from psychological concepts.
'Anxiety' in the context of FNS is complex and needs to be explored as it can be a triggering factor, or a consequence of symptoms. One patient may recall that everyone in the family was anxious as a re- for you to do. The first video aims primarily to educate the patient, while the second video is more interactive. The concept of the vicious cycle that causes stress is worked through using an example.
The viewer of the video is invited to think of the interplay of cognitions, moods and bodily symptoms they might experience whilst sitting in a dentist's waiting room. The last section, 'a little exercise for you to do', ties in with the accompanying worksheet (Appendix 1) and contains a short mindfulness task. The patient is invited to rate their anxiety on a 0-10 scale, then focus on something in the natural world such as a tree or a leaf or flower. They are asked to focus on this object and observe the fine details, then re-rate their anxiety on a 0-10 scale. The final exercise is a symptom diary that asks the patient to develop the habit of analysing their thoughts, emotions and behaviours at the point of symptom onset.
The 'Anxiety & FNS' module has been well received as many patients with FNS have not previously made the link between anxiety, stress and their symptoms. Sharing the example of the dentist's waiting room can open up a fruitful discussion. During the course of the QGSH, some patients have expressed a wish to 'see' the therapist they are interacting with, and the talking head embedded in the video allows them to see the therapist talking through the slides. The format and delivery of this and other modules is subject to ongoing informal reviews.

| Engagement with the QGSH
In the 35 months the programme has run, from January 2017 to December 2019, 191 patients have taken part in the inpatient FNS programme, and 122 of these had taken part in the QGSH. The rate of completion of the QGSH varied between patients but, for these data, 'taken part' is defined as at least one email response by the patient. Demographic information is summarised in Table 3.
All patients referred to the IP programme were referred to the QGSH, but in small number of patients, there were issues with literacy, access or, unusually, urgency of admission, leaving no time for QGSH. Patients who did not respond to the invitation email nevertheless progressed to the inpatient programme; that is, QGSH did not have a screening role.

| Qualitative data
When the online service was first used, patients reported informally that interacting with the therapists reduced their anxieties about FNS treatment, in particular their concerns about stigma and the F I G U R E 2 The first video for the 'Anxiety and FNS' module attitude of staff. A number of patients talked about their previous negative experiences of diagnosis and unhelpful interactions with healthcare professionals. Conversations with the QGSH therapists explored these experiences and helped to reassure these patients.
Although it was an 'optional' extra, almost all patients participating in the QGSH got hold of the book. The feedback from patients was overwhelmingly positive; that is, the QGSH had been helpful.

| Preliminary assessment of the outcomes of Queen Square GSH
We have embarked on a more comprehensive assessment of outcomes. Unfortunately, data collection was halted due to the COVID-19 pandemic. We present here a summary of our initial assessment of the outcome of delivering the QGSH to a sample of patients. We developed two study-specific outcome measures, and the full details of the development and psychometric testing of these scales are outside the scope of this manuscript. We developed a PROM and a CROM.

| The Patient-Rated Outcome Measure
The PROM has 31 items rated using ordinal 5-point Likert scales of 'strongly disagree' to 'strongly agree', divided into four subsections: (A) knowledge of FNS, (B) experience using the PTP materials, (C) whether PTP helped the patient transition to the inpatient unit and (D) family involvement in FNS.

PROM: findings
Data were collected from 19 patients. Two-thirds of patients responded positively (agree or strongly agree) for sections A, B and C.
Section 'A' was intended to test 'knowledge of FNS'. This section was the most consistent across patients, with no scores below 3.
Section 'B' was intended to test 'experience using PTP materials' and included six items that assess the patient's feelings about different elements of the PTP. The overall sectional average was positive. All the patients felt that accessing the videos was easy (item 6). Section 'C' had six items aimed at exploring the transition from outpatient to inpatient therapy, and most items were positive, with a median of 4 or 5. Section 'D' focused on family involvement in FNS treatment and was the largest section with 12 items. Most patients chose to select 3 (undecided). From additional qualitative comments elicited, most patients reported they were 'uncertain' about D, that is, family involvement in FNS, and this is an area we will address in future.

| The Clinician-Rated Outcome Measure
The CROM has 15 items believed to address all elements of patient preparedness. They are as follows: (i) knowledge of FNS, (ii) engagement during the preparatory treatment, (iii) handover organisation, and (iv) overall competence for the inpatient therapy. Responses are given on an ordinal 5-point Likert scale ranging from strongly disagree (1) to strongly agree (5).

CROM: findings
The CROM was administered to 29 clinicians. While Sections 1 and 4 were answered positively overall with medians of 4, Section 3, describing handover from the QGSH team, had a low score. It would appear that our handover notes were not received by all members of the inpatient team. The QGSH team is currently addressing this.

| Summary of preliminary outcome data
After developing the PROM and the CROM, we collected data from handover organisation, and (iv) overall competence for the inpatient therapy, were positive except for (iii) handover to the inpatient team.
We are making changes to address both of these areas. The QGSH requires fuller assessment of outcomes, and this is the focus of ongoing research.

| D ISCUSS I ON
The Queen Square Guided Self-Help programme is an Internet-based introduction to rehabilitation for functional neurological symptoms, delivered to a group of tertiary care patients with very significant disabilities, by experienced clinicians. Its main aim is to initiate patients to a CBT-based rehabilitation approach, which offers its own clinical benefits but, crucially, mainly aims to optimise the efficacy of subsequent inpatient multidisciplinary treatment. The QGSH has been developed and applied since 2015 and is being evaluated and developed on an ongoing basis. It has not only a clinical impact, but also an academic and educational one, as its associated projects form an excellent arena for graduate student participation in service evaluation.

A PPE N D I X 1 A N X I E T Y & FN S: WO R K S H E E T Thinking about anxiety: A guide for patients with functional neurological symptoms (GNS): To accompany videos 1 & 2
This is a worksheet to accompany a section of our Guided Self-Help (GSH) on the topic: Thinking about anxiety: A guide for patients with Functional Neurological Symptoms (GNS) There are two videos: Part 1 & Part 2.
As you watch the videos you will see reference made to three tasks 1. Task 1: Asks you to imagine going to an appointment with your dentist and to write down your thoughts.
2. Task 2: Invites you to rate how you are feeling on a 0-10 scale. You made an appointment with your dentist because of a problem with your tooth. You are in the dentist's waiting room and you will soon be called in. You can smell the mouthwash and you remember that you are always invited to rinse your mouth at the end of treatment.
You start to have automatic thoughts.
• Can you think of some thoughts? Please note them down on your worksheet.
These thoughts lead to bodily sensations.
• Can you think of some of the bodily sensations? Please note them down.
This might affect your mood.
• Can you think of ways your mood might be affected? Please note these down.
Finally all this might affect your behaviour.
What might you do..? Please note this down.

Task 2
When you are feeling stressed or anxious or panicky: Rate your feelings on a 0-10 scale: Write down the number……….
Spend a few minutes doing something relaxing such as connecting with something in the natural world. Look at a tree or a flower. What do you notice about the leaves, the petals..?

Now breathe out.
Rate your feelings on a 0-10 scale: Write down the number……….

Task 3
Please keep a diary over the next week. Each time you feel 'panicky' please note down your: • Thoughts