Individuals who experience chronic functional symptoms frequently have an impoverished quality of life in large part because of their perception that neither the medical establishment, nor their family and friends fully understand the extent of their suffering. Patients report that the lack of sufficient explanatory organic or structural pathology for their symptomatology leaves them frustrated. Paradoxically, it is their concrete focus on aetiology that often prevents them from making progress. Their concerns – although not their symptoms – are similarly experienced by those with severe and disabling Health Anxiety.
Identification of these two populations led to the development of The Functional Symptoms Recovery Clinic, a specialist service for adults (over 18s) patients who present with complex symptoms, typically involving two or more organ systems, usually of a chronicity greater than two years. Some patients have not found it easy to engage with mental health services; many are at risk of self-neglect. The Clinic accepts referrals from neurologists and specialty consultants who confirm that neurological and/or physical causes for the patient’s presentation have been excluded.
All patients referred to the Functional Symptoms Recovery Clinic are offered an extensive biopsychosocial assessment by Consultant Psychologist, Dr. Nikki Scheiner. If there are medical and/or psychiatric issues – for example, a patient with Systemic Lupus Erythamatosis (SLE) - the patient will be jointly assessed together with a physician or psychiatrist. Illness beliefs and illness knowledge – both significant factors in the perpetuation of functional syndromes – are elicited during the assessment, together with the extent of the patient’s insight into their condition. The assessment may be completed in one session, or – as is more likely – over 2 or 3 sessions. It aims to leave patients feeling ‘heard’, without colluding with their belief system. . Importantly, there is no obligation on the patient to accept that there is a psychosocial explanation for their condition, although they need to be open and curious about their symptoms in order to be accepted on to one of the Clinic programmes.
The patient is then presented with two Recovery options. Those who prefer one-to-one therapy may select a package of individual therapy, usually 12 sessions, depending on their progress. The package may be extended to include Physiotherapy and Occupational Therapy sessions.
The alternative option is to purchase a package of group therapy which includes Physiotherapy and Occupational Therapy. This option is specifically for patients with functional symptoms whose daily functioning is significantly impaired by their symptoms, but are mobile enough to attend the Clinic. The groups are not divided according to condition, and may therefore include patients with movement disorders, gastric/pelvic pain, conversion disorder, NEAD/dissociative seizures, dystonias, or any other physical symptoms that cause distress and/or pain. The rationale for including patients referred by Neurology, Cardiology, Rheumatology, Gastroenterology, Gynaecology, Respiratory medicine and other specialties groups is that patients typically display a common aetiology (emotional dysregulation, poor emotional literacy or alexithymia, and maladaptive coping strategies for stress, ) and pathophysiology (weakness, fatigue, pain). Careful consideration is given to the composition of the group in order to avoid having a group dominated by, for example, individuals with personality difficulties.
At the first session, patients are asked to complete a form with basic demographic information. The form includes questions relating to the number of different hospitals visited, the number of investigations and procedures, the frequency of OPAs and whether patients have ever formally complained about their care. The rationale for asking about unscheduled OPAs is that anecdotal reports from both GPs and consultants highlight that patients with functional symptoms present more frequently – often as an ‘emergency’ – and have longer appointments than patients with organic presentations. Additionally, some patients with functional syndromes have been known to complain when they are not given the answers they expect. This concern amongst clinicians may, in part, explain their reluctance to challenge the patient as robustly as they might, given that complaints are both distressing (even for experienced clinicians) and time-consuming. More importantly, from our Clinic’s perspective, patients are caught up in a process which distracts them from the therapy and therefore delays their recovery.
Pre-and post-group measures include an evaluation of mood and motivation (MMM, author’s own), and identification of main areas of difficulty (Scale for Evaluating Persistent Symptoms (SEPS); Health Anxiety patients complete the Health Anxiety Inventory (HAI). Each week, group members complete the EQ-5D Quality of Life Questionnaire and the Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS). The group programme comprises 3 parts: psycho-education, CBT and ACT, and experiential exercises/mindfulness practice. The psycho-education includes information about the physical sequelae of stress , why happiness cannot come out of the back of a blister pack (dependence on medication), learned helplessness, and the importance of taking an active role in recovery. The CBT and ACT interventions used, which include Compassion-Focused techniques, aim to move patients away from a focus on symptoms towards living a life consistent with their valued goals. Stress and anger management are an integral part of the second phase. The experiential activities focus on relaxation and Mindfulness, and teach participants the ability to switch attention.
Between- session tasks reinforce the learning, allow patients to practice their new skills, and carry out the goal-directed experiments they have designed for themselves. The tasks aim to enhance both a sense of self-efficacy and compassion. It is hypothesized that increased psychological flexibility and decreased symptom perception accompany enhanced functioning. Patient participation during the sessions is strongly encouraged. Feed-back at the start and end of each group is integrated into the following week’s programme. All group participants are offered a 1-to-1 meeting with the psychologist half way through the life of the group. At the meeting, the assessment is shared with them and any obstacles to progress identified and discussed.
The data from the group programme shows a sharp decrease in G.P. and unplanned hospital out-patient consultations, as well as an increase in quality of life. Outcome measures are repeated at 3 and 6 months post-group.
From 2018, there will be an option to spend one or two weeks at The Functional Symptoms Recovery Clinic’s Italian retreat. This is an intensive course which involves nutritional instruction, physiotherapy, relapse prevention and resilience training, and is designed to extend and reinforce the group programme - or indeed the individual therapy for those happy to participate in a group. There will also be lectures on anxiety and depression. The course will be fully catered, with daily visits to hand-picked restaurants in the local area which serve fresh local fare. There will be time for shopping and exploring.