1. Whose pain is it anyway? Patient led health needs assessment and self care resources Frances Cole, Hospital Practitioner and GP Pain Rehabilitation Programme Bradford Teaching Hospitals NHS Foundation Trust March 2007

2. Chronic pain Chronic pain is very common, invisible and incurable!!! 38% Adults over 18 yrs CLICK Survey W.Yorks 2001 Demoralises, taxes emotional resilience of sufferer and their family and capacity to support sufferer. Person centred model / cognitive behavioural approaches enable pain survivors to improve health functioning despite pain.

3. Biopsychosocial model of health Health is a resource for everyday living Role functioning how physical or emotional health affects work or other regular daily activities e.g. cooking, cleaning, looking after children, play sports, organise activities Social functioning in social activities with family, friends, neighbours or other groups Physical activities carry out basic physical tasks e.g. climbing stairs, walk to the shops, bathing or dressing yourself Bodily Pain not feel bodily pain or have pain interfere with your normal daily life Mental health feel peaceful and happy rather than down in the dumps, sad or nervous

4. My prison bars by JG age 24 yrs

5. Mean scores of SF36 Health Status 107 pain sufferers before PMP compared to UK population. West Yorks. 1999

7. Patient led Health Needs Assessment (HNA) for pain 1. Improves health functioning; it identifies crucial changeable factors contributing to the person’s pain condition. 2. Involves professionals working with individual + carers to focus on acceptable, feasible changes within available resources. 3. Helps target people with most to gain.

8. Health needs assessment tool (HNA) Designed by a health needs process; HCP in pain services and patients (collaborative) Questionnaire contains key health issues affected by pain (relevant) Patient uses before assessment in all pain services + follow ups to monitor change (timely) Patient prioritise their needs (communicates) Self care resources supported by PALS services (ownership + control)

9. CHANGING HOW THE PAIN AFFECTS YOUR LIFE (Health Needs Assessment tool) Walking or moving about Lack of fitness and energy Balance / falls Side effects or other problems with current pain medication e.g. tablets etc. Pain relief Understanding why longstanding pain occurs An unhelpful pattern of activity of doing too much, getting more pain, then doing too little Disturbed sleep Managing mood changes of depression, anger, anxiety or worry Relationship difficulties; partner, family, work etc. Sex life Remaining in work or returning to work / training Financial / housing problems Current legal claims Concerns about your carer/partner, their health or other problems Other difficulties that you feel are important to change, e.g. hobbies, leisure or social events or visiting the church or mosque. Please describe …………

10. HNA patient problems or difficulties (n=79: 254 problems prioritised) Pain Services Bradford Teaching Hospitals 2005

11. Did the HNA help patients with chronic pain? Focus on impact of pain Shared understanding of needs by patient + HCP Patients helped to take control

12. “He showed and explained” Helped focus aspects of life down to a minimum / priority to discuss” “Highlighted significant points which could be missed during consultation” “I did not feel rushed or pressured, I could explain in a bit more detail. Now I understand that speaking to a specialist has helped me and given me hope that people understand me” “Knowing the condition is to be treated without tablets” “Made me realise the changes I have to make, to make things work better” “Nice to have someone to listen” “Bit of light amid a lot of darkness ” Recommended alternative treatment”

13. Self care resources Self care; the person takes responsibility for their own health and well-being; i.e. staying fit and healthy, both mentally + physically, taking action to prevent illness + accidents, better use of medicines, managing minor illness better care of long term conditions

14. Impact of pain experience and resources Pete Moore EPP 2005 Persistent pain Inactivity and/or overactive pacing styles Weak muscles/ loss of fitness Stress/anxiety/tension/ashamed Low mood & negative thinking; self, pain, future Anger/frustration Guilt/depression Time off work, family and money worries, no shower, rundown estate Fatigue/ lack of stamina

15. Did the self care leaflet help? Feedback from 19 patients Leaflet content Helpful advice Pain cycle Acceptance Support; groups, professionals, websites Clear layout Easy to reading Everything!!!!!! Changes in managing pain Pacing activities Regular exercise Relaxation Setting goals Acceptance Communicate with others Kept a pain diary Realise no longer alone

16. It’s hard to keep smiling when your pain has made you feel like this for over 30 years

17. The way forward ……..seeing the person not the pain Pain is everyone’s experience HNA helps clarify the impact of chronic pain on person’s health Focuses on patient priorities Helps the person access self help resources to take control Self help information used through out pain services + support by hospital PALS

18. My cloud has had a very colourful lining