Why is Psychology relevant to hypermobility and rehabilitation? Dr Andrew Lucas Consultant Health Psychologist

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1 Why is Psychology relevant to hypermobility and rehabilitation? Dr Andrew Lucas Consultant Health Psychologist

2 How can Clinical Health Psychology help? Lots of people have a history of not being believed about their symptoms There is some evidence to suggest a higher rate of panic and anxiety disorders in people with EDS Lifestyle may be significantly restricted by pain and joint instability

3 How can Clinical Health Psychology help? Psychologists can help you to: Come to terms with your diagnosis Make changes and set goals Look at challenging the fearavoidance cycle Recognise and reduce anxiety Develop ways to manage stress Improve your communication with family/friends

4 Cognitive Behavioural Therapy (CBT) CBT is a general term for treatment methods using behaviour modification techniques but incorporating procedures for changing maladaptive beliefs. Aim is to change what the patient does and how they think. We all make mistakes in our thinking even you! CBT is about changing cognitive errors or bias CBT explores emotional reactions are there more helpful ways of thinking and reacting to experiences? CBT focuses on appraisal, interpretation and expectancies

5 C B T - should be collaborative - encourages the patient to be responsible for change - aims to modify unhelpful beliefs - emphasises the reciprocal influence of behaviour, thoughts and feelings - develops an active approach to medical self management - must be goal focussed

6 Are patients with EDS different? I have compared the EDS/HMS group to my other patients with chronic pain. The profiles are very similar apart from higher pain related disability, lower pain related self-efficacy (self-confidence) and poorer quality of life. This preliminary analysis suggests that patients with HMS report higher disability, lower confidence and poorer quality of life compared to other patients with musculo-skeletal chronic pain.

7 More differences Wide variety of symptoms Elevated self-harm / body dysmorphia Elevated anxiety Greater cynicism towards healthcare services Passive aggressive / defensive Expert patient group well informed?...and the most common goal for our patients? Learn more about EDS

8 Why am I seeing you? Danger of erroneous assumptions Unfortunately both patients and family members may make erroneous assumptions about my role, for example, resist working with me because there is a belief that the involvement of a psychologist is further evidence of an imagined or psychiatric concern. Some direct quotes may help to illustrate this point.

9 I have been told, for example, that I am not mad so I don t need to see you, my pain is real so I don t need to see you. When I have invited family members to meet me, some have told their relative with EDS I don t need to see the psychologist because I am not the mad one.

10 Problems associated with previous care There can be psychological consequences of not being believed or being taken seriously and these difficulties can begin at an early age. Psychological / Psychiatric labels Attention seeking Parental / family guilt

11 What are the consequences for not being believed? I have found that many patients with EDS/HMS are defensive and hypersensitive to being challenged. In particular, on finding out I am a Health Psychologist this often fits into their previous experience of being dismissed or labelled as simply a psychiatric or psychological concern. During my first session I often have to spend time reassuring the patient that they have not been asked to see me because anyone thinks the pain is in their head or imagined.

12 A common finding One can only speculate on the psychological consequences of repeated medical consultations from various specialists with each offering an opinion and possible diagnosis. I would term this experience as fighting for credibility or fighting to be taken seriously.

13 Working together In order to move forward both patient and therapist will need to collaborate while being wary of making value judgments and erroneous assumptions. Unfortunately, some patients are too guarded and resistant to change, perhaps as a result of fighting for credibility.

14 We are all flawed! I believe that ability to change is influenced by many factors, including the patient s own characteristics and behaviour. Conversely, no doubt at times, I have shown a lack of compassion and understanding when becoming frustrated with what I perceive as difficult behaviour that has also led to undermining the therapeutic relationship. Clearly greater mutual understanding and improved communication would improve our outcomes.

15 Communication with Health Professionals It is clear to me that many patients with EDS/HMS struggle for recognition and acceptance of their condition, particularly when, over the years, they have encountered health professionals who, might be at best sympathetic but unhelpful, and at worst patronising and insulting. I firmly believe that in order to help patients move forward with their condition there is a need to communicate effectively and assertively with health care providers.

16 Clinical interaction It can be imagined that if a patient has typically been dismissed from previous health care interactions they might bring a certain prejudice or attitude into any future consultations. This might be seen when the patient displays passive aggressive behaviour seen when being flippant or sarcastic in their replies to my questions. No doubt this type of behaviour can be seen in both health care provider and the patient.

17 On one side It is important for both sides in this collaboration to be open and respectful of each other s knowledge and experience. Unfortunately I have observed some patients who enter the consultation with an attitude that is both provocative and a barrier to effective communication. Although I reject the notion of difficult patients as it is pejorative, judgemental and labelling, and I prefer the term difficult problems.

18 on the other side Similarly the health care professional will be well advised to consider their communication style and be wary of similarly making erroneous assumptions and appearing judgemental that immediately might be considered as provocative and put the patient in a defensive frame of mind. Effective communication must be a two way process with both sides playing their part in trying to maximise successful outcome.

19 Familial dynamics The management of EDS/HMS is still a relatively new science but it is clear to me that models of care must include involvement of friends and family. The role of the family is crucial because the type of support may contribute to ineffective coping. Just as individual patients will cope in idiosyncratic ways so will family and friends try to adapt and cope accordingly.

20 What type of support? Over attentive Vs apathetic Too much Vs too little

21 Family barriers Even when I have worked with family and friends I have often encountered resistance to change as it is certainly not my intention, although regrettably some family members feel judged and criticised for not coping more effectively with their relative s condition.

22 Subtle barriers Of course not all family and friends are overtly resistant and some of the barriers are more subtle. For example, I have encountered passive aggressive behaviour when the parents may show an interested in attending with me and clearly wanted to be seen to be doing the best for their child, when actually in hindsight they have been unwilling and unable to change the family dynamics.

23 I have found that encouraging patients to review their relationships can be a helpful start in exploring alternative models of coping and communication style. As we are still developing our expertise working with this patient group it is clear to me that we also need to develop expertise in working with family and friends in order to encourage and foster improved coping.

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25 Our Rehabilitation Unit at the R.N.O.H. Thank you for listening