Dr Philippa Bolton Joanne Smithson
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1 Dr Philippa Bolton Joanne Smithson
2 Introductions and a quick word on terminology Medically Unexplained Symptoms (MUS) Functional (Somatic) Symptoms Persistent Physical Symptoms (PPS) A patients perspective: like physical more than unexplained. and is unexplained really accurate or useful?
3 Today s training Aim: To become skilled at working with patients with persistent physical symptoms Objectives: by the end of the session you will be able to: Recognise a patient with persistent physical symptoms Identify, from a range of strategies, how to negotiate a management plan with your patient Be able to explain a persistent physical symptom diagnosis your patient Be familiar with a range of resources for you and your patient to utilise both in session and at home.
4 The patient: GP Gen surgery Gynae Mental health Patient Gastro Pain clinic A and E
5 Two things make MUPS patients 100x worse Stress Increased focus and attention on symptoms. If you fill their days with hospital appointments, give them sick notes, repeated tests, investigations, medications, take away their employment, social life and all their previous ways of coping by telling them they are sick, you increase both of those factors and make the patient worse.
6 Key points: 70% of MUPS patients get better in 6 months if we don t make them worse GOOD prognosis. Be aware of your own anxieties and use supervision to manage them Please just take this prescription. I know you won t take it, but I don t know what else to do and it will make me feel better. A and E doctor, You will see on average one MUPS patient an hour.
7 High intensity work Specialist psychotherapy, liaison, acute trust clinics Moderate intensity work Physiotherapy, OT, IAPT Liaison psychiatry Low intensity work: Social prescribing, Patient groups, guided self help, IAPT Primary care management: GP and patient education and resources.
8 The problem patient GP 3-12 bn
9 Recognising the patient: Identify them EARLY Frequent attenders. Patients on repeat prescriptions for opiate like analgesics / pregabalin / gabapentin etc. Certain diagnoses may have MUS elementfibromyalgia, CFS/ME, IBS, chronic pelvic pain, atypical facial pain, back pain. Multi- symptom presentations with normal investigations. MUS should be considered if you see a patient with Physical Symptoms For 3 months Affecting functioning Cannot be readily explained
10 Who is the PPS patient? Before falling ill, the vast majority of participants in our research had enjoyable, full, often stressful, jobs and careers, juggling multiple interests and commitments. Many vividly describe their crash out of the work: I used to work 50 hours a week, then 25, then 10 then I gave up. I d been a hard worker and I was having problems and - for a GP to turn around and say to somebody who could work so hard, that there s nothing wrong with you? It just blew a fuse in my head
11 Why medically unexplained symptoms are not medically unexplained. Focus and attention (it is not all about stress): Consciousness split into 2 systems actions you consciously think about (eg walking backwards) and actions you do without thinking and are in muscle memory (walking forwards). If thinking interferes with the muscle memory, the you can lose the ability to access the muscle memory and things go wrong. So often an illness/ accident can precipitate a functional presentation. The more focus and attention you give a symptom, the worse this process gets.
12 In NEAD, EEG findings have demonstrated that attention goes massively inwards just prior to a seizure. Which is why grounding techniques, which pull attention outwards, work. Physiotherapy can resolve two thirds of fixed functional neurological symptoms (tremor, gait disturbance, spasm) by tricking the mind into stopping the thinking interference (pulling the attention onto something else to stop the interference by using music, mirror image work, speeding up an action etc) Using social prescribing to pull attention away from symptoms and towards quality of life works in a powerful way to reduce symptoms. Use diary cards with patients to prove it to you and them.
13
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15 What happens in chronic stress Cortisol diurnal cycle flattens = higher total dose of cortisol Sleep disrupted Immunity suppressed Hippocampal atrohpy poor memory Increase in blood glucose diabetes Increase in blood pressure water retention
16 And there s more... Breakdown protein muscle wasting Mineral loss from bones - osteoporosis Depression Pain sensitivity Decreased energy Problems with digestion Amenorrhea
17 Remember, Chronic illness causes Chronic stress which traps people in this cycle of symptoms and poor wellbeing. Ensuring depression and anxiety are treated is important to reduce the physical effects of these conditions on the body. Talk to your patients about how in chronic pain the body is in stress, muscles tense, and this explains the fatigue and also why pain tends to spread, and why people get headaches and poor sleep with it Working with stress management techniques and wellbeing interventions reduces stress and thereby symptoms.
18 Pain Chronic pain is not registered in the thalamus like acute pain. This is why acute pain drugs don t work It is located in the cortex. It links to emotion, memory, sensation etc. Therefore far more complex. This is why wellbeing interventions work, and EMDR is being found to work in early trials.
19 Heart Rate Variability In all chronic conditions HRV is poor. It is a marker of how well the vagal nerve is working. The vagal nerve is one of the largest parts of the parasympathetic nervous system and controls larynx, heart rate, breathing, gut etc. If the sympathetic nervous system is in overdrive and the vagal nerve withdraws, you get issues such as palpitations, shortness of breath and dizziness, swallowing problems, IBS symptoms etc. Generally feeling unwell.
20 We can now use biofeedback kits to test HRV and help patients recognise when their bodies are in a state of wellness. We can do this to train patients in relaxations etc, but also to target interventions eg one person may have good HRV will choir, another with pilates. Exercises such as T ai Chi, Toga and pilates are good for getting the body to get the vagal nerve working body feedback to the mind. You can explain to patients that the vagal nerve can be controlled by how people think and feel, so by doing things that make people feel calm and good, the vagal nerve will work better, and symptoms will reduce.
21 fmri We are finding new research which shows some surprising links between the amygdala (the emotion centre) and other parts of the brain (eg motor initiation centre). So in NEAD, when there is a lot of emotion, the motor activation centre is also activated, which we think causes the seizure. Watch this space for more info..
22 So how do we talk about PPS with patients?
23 Effective explanations are: Tangible, credible and linked to mechanisms in the body: I think these symptoms are occurring because your balance system isn t working properly. Would it help if I tried to show you how the balance system works how it communicates with your brain? Blame free reinforcing symptoms are real and not inadvertently blaming the patient: your brain has lost trust in your balance system or your balance system is no longer accurately telling your brain what is happening rather than you have become more sensitive to movement. Involving - moving from symptoms to action: how about downloading the vestibular rehabilitation leaflet from the Ménière s Society website and working to retrain your brain, so that it trusts your balance system again.
24 What symptoms might we want to be able to explain?
25 Exercise Prepare a short narrative for your chosen symptom, include the three parts of an effective explanation: Tangible, credible and linked to mechanisms in the body Blame free reinforcing symptoms are real and not inadvertently blaming the patient Involving - moving from symptoms to action If you d find it helpful, make a diagram to aid your explanation We will collate these and add them to our resource collection.
26 Here s a couple we prepared earlier
27 Role play Practise consultation: Talk to your patient about PPS Instil therapeutic hope Offer a patient resource for them to view Negotiate a no test approach. Negotiate regular appointments Sell the new approach! Present your role play to the group.
28 For next session In the next week practise this with a real patient. Come back next time and we will discuss what went well/ even better if.
29 Group discussion How did it go with your patient?
30 PPS Patient Pathways what do we know? It s an aleatory pathway Who you meet, when, and what they believe, say and do. No one pathway Key factors determine the direction the pathway can take: individual and organisational
31 The most influential factor: Luck I blacked out in A&E, [got] admitted and they ran tests and everything and they referred me back to the rheumatology department and I saw somebody who was from New Zealand I think, who was a registrar at the clinic. And she said when was the last time you attended a pain management programme? and I said what s one of those, I ve never been on one and she just looked at me and said all this time and you've never been referred? and I said no. She said would you like to go to one? I said I would love to go to one, anything that would help. And so I got referred on and that was how I met [expert local clinician] and the team there and got enrolled onto the pain management programme. And it was fantastic [ ] And I thought why couldn't something like that have been offered following the initial diagnosis? because then all the years since then I would have been better able to manage it. And maybe would have been able to hold onto my job and various other things (patient)
32 Five key points on the PPS Pathway
33 1. Early symptom presentation Hold a mind-body diagnosis in the conversation alongside a physical or organic diagnosis: we need to think about the possibility it might be X (organic or traditional diagnosis) and we should also investigate the idea it might be Y (a PPS diagnosis). This ensures PPS is not seen as a diagnosis of exclusion, but an equally valid approach right from the start. When I think a patient might have PPS, I do three things: slow down, broaden the lens and listen hard. (GP)
34 A bio psychosocial history
35 2. Explaining symptoms
36 3. Framing tests and referrals Research suggests that changing patients ideas about the meaning of diagnostic-test results for their health prior to undergoing testing can reduce concern about symptoms, provide reassurance, and reduce future symptom reports I can normally tell within the first few minutes of our consultation when GP X has referred a patient. They come to the appointment with a clear picture of why they are here and how we might be able to help. It s all about how the referral is set up, it makes such a difference. If I m right, the test will be negative, because you can t spot things not functioning, you can only see where things are damaged. It s like a still photograph of a movie, you can t tell where things are happening.
37 4. Introducing psychosocial factors A series of three short films featuring Brainman have been developed by an Australian partnership (GP Access and the Hunter Integrated Pain Service) supported by Professor Lorimer Mosely. Understanding Pain in less than 5 minutes This video introduces people with chronic pain to a self-management tool that will help them manage the impacts of chronic pain on their functioning, emotions and interpersonal relationships.
38 5. Ongoing support for people with PPS Shared care/lifestyle plans Medication reviews Local referral options social prescribing Managed programme of consultations
39
40 1) Agree a no test approach DON T HARM THE PATIENT FROM OVERINVESTIGATION. Do all the tests you need, all together, at the start, with agreement from the patient at the start about when tests will stop. Remember, the more tests you do the more likely it is that you will get a false positive and the less likely you are to get engagement with alternative models of treatment. Employ a positive risk taking approach only investigate NEW symptoms or significant deteriorations in previous symptoms.
41 2) Give a positive diagnosis - EARLY One session of good psycho-education can CURE 10% of patients. You have the power to do this! Given that cost to the NHS is 3bn a year, this can save 300 million a year. Tell patients that you know what this is I tend to use the term functional disorder as opposed to medically unexplained psycho anything. There isn t anything on the tests, so we know there is not a serious disease, but you have serious symptoms so your body clearly is not functioning correctly, that s why its called a functional illness
42 3) Instill therapeutic hope EARLY For most patients prognosis is GOOD IF medicine doesn t make it WORSE. 70% recover in 6 months. So use this to instil early therapeutic optimism. DON T abandon the patient. They have symptoms. Move to a symptom management / quality of life approach
43 4) Preserve and maintain function Bring in the OT, the physio and social prescribing!!! Patients get much worse if they stop doing their normal activities, get deconditioned and sit around the house thinking about their symptoms, getting depressed and developing anxiety. EARLY referral to teams to ensure this does not happen - prognosis declines rapidly if patients lose functioning. Work is therapeutic go easy on sick notes.
44 5) Screen for and treat co-morbidity Remember you can raise psychosocial issues alongside doing investigations- so can initiate a conversation early on about other factors affecting pain etc. Listen for cues- patients often do refer to other concerns and will mention psycho-social problems if encouraged- eg I always get my headaches on Mondays when I am going to work... Set out your stall- I always feel it is important to consider ALL factors affecting health, so that s why I am asking you about stress/mood etc.
45 Treat Anxiety and depression Patients who somatise often do not experience anxiety and depression the way other patients will. Have a low threshold for treating with antidepressants can have dramatic effect. SSRI s first line. Duloxetine and venlafaxine good for pain and depression. Get to a therapeutic dose don t be shy! However, some of these patients are v sensitive to side effects and need titrated up from paediatric doses. Caution with amitriptylline, - don t use in combination with other antidepressants.
46 6) Understand the patient FIND OUT THE STORY!!! Predisposing factors what s in the past that is relevant Precipitating factors what happened in the few months before the symptoms start Perpetuating factors what s making the symptoms worse Protective factors what s making them better
47 Stress bucket model
48 7) Start treatment Ensure ONE OR TWO GPs ONLY manage that patient. The relationship is key to recovery, don t have them seeing lots of different GPs / locums/ juniors You are key in managing and determining expectation and therefore the salience of and focus on symptoms Help patients come to a place of ACCEPTANCE of their symptoms and then shift the focus to how can we help you get the best quality of life WITH these symptoms
49 IAPT and psychological therapy CBT has proven benefit in these patients But if a patient attends IAPT and steps 1-7 have not been done, the outcomes will be much worse. Not all patients need or want talking therapy. Behavioural activation can work just as well, esp for the elderly.
50 How will I support my next PPS patient?
51 How do we take this forward in our practices?
52 search for Persistent Physical Symptoms
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