Pete Moore Educator, Author & Pain Toolkit Trainer AKA…that Self-Management Dude AKU Society Alexandra Palace, London 7 th June 2014

What would you like to get out of this presentation to self-manage your pain? ……………………………………… ……………………………………… ……………………………………… ……………………………………… ………………………………………

What we will be covering today Overview of pain How it can affect people Understanding Pain: What to do about it in less than five minutes? Stretch & Exercise Pacing daily activities Goal setting / Action planning Problem solving recipe Setting Goals Dealing with setbacks

I used to be a patient with back pain but in 1996 I began to become a person again after attending the INPUT pain management programme I did not work for 7 years and cost the UK Tax payer approx £350k. I have been back to work since 2000 and guess how many days I have had as sick days ? I work as an educator, author and trainer promoting active pain self management for patients and health care professionals. I write supporting easy to learn training information for health care professionals and patients. University College London EmoPain - back pain research project Pain Champion UK 2014 So who is Peter Moore? Member of: British Pain Society International Association for the Study of Pain (IASP)

Pain is sometimes like traffic lights… Sometimes it STOPS us from doing everyday things we want to do… Sometimes it leaves people slow… And sometimes it can let us go… 5

So is persistent pain a problem in the UK? The short answer is yes, so you are not on your own. Here are some alarming facts from the Chronic Pain Policy Coalition Over 14m people live with persistent pain and of those almost one in four said pain had kept them from usual activities (including work) on at least 14 days in the last three months. Back pain alone is estimated to cost £12.3 billion per year. People with persistent pain were more likely to be anxious or depressed - 69% with the severest pain reported this.

How many types of pain are there? i.e. arthritis ……………………………………… ……………………………………… ……………………………………… ……………………………………… ………………………………………

When does pain become chronic or persistent? Persistent pain (sometimes called chronic or long-term) is:- Pain that continues for 3 months or more and may not respond to standard medical treatment. It can be disabling and frustrating for many people to manage. It can also affect relationships with your family, friends and work colleagues. Sometimes people with persistent pain are told by healthcare professionals after assessment: “I am afraid you have a chronic or long-term pain problem. You will have to learn to live with it.”

Do you feel trapped in a persistent pain cycle? 9 Do you do more on good days and less on bad days? Are you an over achiever – doing more than you have to? Are you a people pleaser? Do you have a problem saying NO to others when you are asked to do things?

Persistent Pain Being less active Loss of fitness, weak muscles, joint stiffness Create ‘no go’ lists of things you cannot do Sleep problems, tiredness & fatigue Stress, fear, anxiety, anger & frustration Medication side effects Weight gain or loss Negative thinking, fear of the future, Depression & mood swings Time off work, money worries, relationship concerns The Persistent Pain Cycle

Boom and bust cycle Having a good day Over do it Increased pain Rest to recover

Stretch Break 5mins Useful organisations Why don’t you come and join us for a free green “workout” and gardening experience in Winsford Gardens, the home of the Penge Green Gym?

Understanding Pain: What to do about it in less than five minutes? Hunter Integrated Pain Service Australia

Managing pain doesn’t tend to go in a straight line So, we need a plan and to be patient

f the 8,760 h urs in ne year People with pain or long-term health condition receive (on average) 3 hours of professional care a year… … so for the 8757 hours remaining – we have to self manage 15

Yes they do – but may want some gentle persuasion to take action… “I’m not asking you to change your spots, I’m just asking you to take out the rubbish ” Do people want to change?

Stretch & Exercise (Tool 8) What do cats and dogs do when they wake up? See Page… 9 Who has done some stretching this morning?

The Pain Toolkit Over 350,000 printed and in circulation in UK Versions in German, French, Italian, Portuguese, & Spanish. Dutch & Swedish in Adapted for NHS Tayside & NHS Fife Pain Toolkit Australia Pain Toolkit Canada Pain Toolkit Gujarati Pain Toolkit Ireland Pain Toolkit New Zealand Self Care Toolkit New Zealand My Pain Toolkit for Teenagers Animated DVD version (subtitled for people with hearing problems) 18

The Pain Toolkit Tools Tool 1 - Accept that you have persistent pain….and then begin to move on Tool 2 - Get involved - build a support team Tool 3 - Pacing (Activity management) Tool 4 - Learn to prioritise and plan out your days Tool 5 - Setting Goals/Action Plans Tool 6 - Being patient with yourself Tool 7 - Learn relaxation skills Tool 8 - Stretching & Exercise Tool 9 - Keep a diary and track your progress Tool 10 - Have a set-back plan Tool 11 - Team Work Tool 12 - Keeping it up…putting into daily practice tools 1-11 PAINTOOLKIT Top three tools: Acceptance, pacing + setting goals, patience with self “The one thing that people want is a plan, everyone works better with one. The Pain Toolkit gives patients the opportunity to have a plan. I know once my Oncologist gave me mine I was so much more happier than floundering around in no-mans land not knowing which door to open.” M.C. Hainault, Essex 19

3 step guide as to how best use the Pain Toolkit. 1. Read the Pain Toolkit and show it to your partner, family, friends or work colleagues 2. Tick off or circle the three tools you have the most problems with and show them to your GP/health care professional, friends, family work colleague and asking for help and support. 3. Once you feel confident with those three tools, then choose another three and repeat the process. How to use the Pain Toolkit 20

Stretch Break 5mins Pacing I found the ‘pacing’ tool most effective for me. I was one of those people who always did an activity until the pain became too excruciating and only then I would stop. Now that I pace my activities, I feel I can do more without the pain increasing. Keeping a pain diary also helped me to see where I was doing too much. H.T. London

22 Accept the problem may not be solvable now SOME key self management skills or tools…the Problem solving recipe Identify the problem List options open to you Choose one of the options Did that option work for you? If not choose another one from your list

Pacing (Tool 3) What does pacing mean to you? Pacing in short is: taking a break before you need it throughout the day. But how can you remember to pace yourself? Remember the old saying…“How do you eat an elephant?” Answer: One bite at a time! Pacing is carrying out activities one bite at a time, and not tackling all of them at once Examples of Pacing…. Page 12

Goal setting (action plan) plan 1.Something YOU want to do Specific (action plan) 2.Measureable 3.Achievable 4.Realistic 5.Time bound So answers the questions: What?How much? When?How often? 6. Rate confidence level (0 – 10) 0 = no confidence etc Score of 7 or more means likely to succeed Setting Goals and Action Plans (Tool 5) 24

Specific: You’re more likely to achieve your goals if they are specific. For example - “I want to be able to exercise” isn’t very clear. “I want to start swimming” is easier to work towards. Measurable: It is easier to know when you have achieved a goal if it can be measured. Distance, a time limit or the number of times you do it are ways to measure goals; e.g. “I want to swim twice a week”. Achievable: It’s important to be honest and realistic. Can your goal be achieved? If not, you will set yourself up to fail. Rewarding: The more rewarding a goal is, the more likely you will want to do it! Either make sure the goal is something that will make you happy, or give yourself treats for your success. Timed: Set yourself a timescale. If you don’t have a plan then it can be hard to get started and stay focused. You can always change your time limits, but make sure you set them. Example of an Action Plan

In pairs help each other set a SMART goal to use the Pain Toolkit or self management resources in the next four weeks.  Specific  Measureable  Achievable  Realistic  Time bound Lets set a goal… 26 What?How much? When?How often? Rate confidence level (0 – 10) 0 = no confidence Score of 7 or more means likely to succeed

Dealing with a setback (Tool 10) 27 Setbacks are common, and usually because… We do more on good days and less on bad days. We are over achievers – doing more than you have to? We are people pleasers, have a problem saying NO to others when asked to do things? See Pages… 13/14 in the Pain Toolkit for examples

good listener clear communicator works in partnership resource facilitator monitors condition outward focused problem solver validates patients experience honest nurtures respect The empowering health care professional is good listener clear communicator works in partnership resource finder monitors condition outward focused problem solver maintains physical and emotional well being partner in care confident The person with pain = a good self-manager 28

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Assessing your own needs “Six different questions to explore for myself and take action ” 1. What’s important for me? 2. What’s important for my health? 3. What can I do to help myself? (Who else should be involved with me to help) 4. What skills do I need to keep well ? Do I have the information / knowledge about my condition? How it affects me? What can I change myself? 5. What ongoing support do I need? 6. Do I know what to do if I get stuck? 30

In pairs, what one thing will you take away today from this presentation to self- manage your health/pain? ………………………………………………… ………………………………………………… …………………………………………………

'Don't wait for a light to appear at the end of the tunnel, stride down there and light the bloody thing yourself.’ Sara Henderson

Any questions please Pete Moore E. M Pain and Self Care Toolkit