1. Jacqui Griffiths – Dietitian MND Team Lucy Hyne- Speech & Language Therapist MND Team

2. Overview Mr X- 57 year old PMH: COPD,alcohol/drug abuse, addicted to codeine, depression, head injury Social History: Enjoys betting on the horses, lives with unstable partner (alcohol abuse, physically aggressive at times with him, hard of hearing) 14yr old daughter

3. FEB 09 -Elective Hospital admission Investigation of a 6 month history of progressive dysarthria, occasional swallowing difficulties, weight loss and unsteady gait. During admission NG placed (1 stone weight loss over 5 months. Feb 09 -70kg) Diagnosed with MND SLT Assessment: he reported difficulty with swallowing tablets, taking 10 min to swallow 2 tablets, advised runny honey and soft diet,. Non-compliant in hospital

4. MND CLINIC MARCH 09

5. Sense of unbearableness It can be protective to deny at times “Why me?” ‘' What have I done to deserve this?” DENIAL Hopelessness MND being an awful / very difficult condition to deal with disbelief As a coping mechanism Terrified out of control

6. CNS VISIT JUNE 09 DEPRESSION

7. CNS VISIT JUNE 09 SADNESS

8. FEB 10---MAY 11 THINKING ABOUT IT !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

9. From history what do think is affecting his ability to make a decision following eating and drinking recommendations and taking so long in accepting Gastrostomy tube? What would you do?

10. 4 1/2 years post PEG Enjoys betting on the horses Continued to eat and drink at risk until Nov 14 (multiple chest infections and hospital admissions) Problems with bowels on-going, C.diff, hospital admissions Weight 82 Kg Has a grandchild Relationship still unstable Documented that he would wish to be resuscitated in the event of cardiac or respiratory life.

11. DECISION MAKING Current Practice ProGas study

12. “I was diagnosed with MND (lower motor) in Nov 2012 after 18 months since onset of symptoms and tests. I made a decision to have a PEG fit because I knew my breathing would be compromised at some stage. I had the small op in June 2013 and while my respiratory muscles were getting weaker I felt if this had been delayed I would have missed my opportunity. I say this because I was using the Nippy machine now and again (mainly on a morning when I suffered from headaches due to my breathing and through the day due to fatigue). I THINK MAKING THAT DECISION WAS THE BEST EVER DECISION I HAVE EVER MADE because by October 2013 I was on the Nippy 24/7. If I had delayed the op then it would have been too late. I was very lucky to have gone until now before needing to use my PEG. Up until recently I was struggling with getting food down and weight was dropping off me. While it has been very hard coming off food (and I loved my grub!), I have started on feeds through PEG and I am putting on weight, am getting all the nutrients/vitamins I need and I save my energy from struggling to eat and it is less of a burden on my family who would normally have to stand for hours feeding me. I would highly recommend to anyone who is thinking about whether to or not go ahead to have it done before it is too late. IT’S A NO BRAINER!”