The Expert Patients Programme in Prison

1. The Expert Patients Programme in Prison Claire Gately Andy Bowen Anne Kennedy Wendy Macdonald Anne Rogers

2. Policy Context • Historically health care in prisons organised outside of the NHS • Long standing debate about fusing with NHS (Home Office, 1964; 1979; 1990) • Inspectorate of Prisons (1996) Prisoner or Patient? • ‘The Future Organisation of Prison Health Care’ (DoH 1999) • From April 2006 all Prison Health Care will be commissioned by PCTs

3. The Burden of Chronic Disease… • 60% of adults in England report a chronic health problem (NatPaCT website) • The need for Self-Care? • Self-Care as a way of managing demand • Saving Lives: Our Healthier Nation (DOH, 1999)

4. A Window of Opportunity… • Poorer physical and mental health • 80% of prisoners smoke • High incidence of mental health problems • 48% reported long-standing illness or disability • Low levels of health literacy (Bridgwood and Malbon, 1995) • Lifestyles that put them a risk of ill health • High users of services • 3 times more likely to consult a doctor • receive inpatient care at least 10 times as frequently (Marshall et al, 2001)

5. What is The Expert Patients Programme? • Self-Management Programme • 6 Consecutive Weekly Sessions • Lay Led • EPP uses: • Skills mastery • Role Modelling • Social Persuasion • Reinterpretation of Symptoms to influence changes to self-efficacy

6. Relaxation Better breathing Healthy eating and nutrition Exercise, how to build levels of fitness, flexibility and strength How to communicate more effectively Making informed choices Dealing with anger, fear, frustration, isolation, fatigue and depression Using problem solving skills How to make plans that work for individuals Working with healthcare professionals Topics Covered

7. Methodology • Qualitative Methodology - semi-structured interviews • Exploration of living with long term condition & experience of EPP • 2 Category C Male Training Prison • Prison X - 11 Pre & 8 Post EPP interviews (April and June 2005) • Prison Y – 2 Post-Interviews only (January 2004) • data collected as part of larger process evaluation • included as deviant case

8. Participants • Mean Age = 41 years (range = 30-66) • Range of Chronic Conditions i.e. Cerebral Palsy, Diabetes, Psoriasis, Asthma, Back Problems, High Blood Pressure • 7 people had multiple complaints

9. Results…

10. Impact of Prison on Management of Long Term Condition • Unconducive environment • Regain control

11. Impact of Prison on Management of Long Term Condition • Unconducive environment • Regain control Well I was a lot heavier before I come to prison. I’ve lost about three stones since I come to prison. Prison’s done a lot for me. People might find that strange, but it has. I see the healthcare staff as and when I need to see them … I’ve had all the checks and obviously I get an MOT, you know, do a check up every so often... [PXID 10, obesity]

12. Experience of EPP For some prisoners - helped to reinforce positive elements of self- management But generally - provided interest but no ‘eureka’ moments - failed to live up to expectations - difficulty transferring into prison environment - course tutors need greater prison knowledge

13. Experience of EPP “You’ve got the exercise problem, I mean obviously we’re on a wing, you can’t go out walking when you like, then you got onto the food business and you’re in no real control of your diet, it’s, you do get a choice but it’s…I’ll give you an example like your 3 bits of fruit that you’re supposed to have daily, I mean it’s things like that that are just impossible so…It wasn’t, it wasn’t actually tailored for jail.” [PXID7 living with High blood pressure, a hernia and back pain]

14. Maintaining a Healthy Lifestyle • Diet – Healthier Option?

15. Maintaining a Healthy Lifestyle • Diet – Healthier Option? “There's not a lot you can do really. You get a menu slip a fortnight before you get your meal, and what’s on that menu, you've got to choose. Then it’s not the best of food. I mean I know it’s supposed to be a place of punishment, but I mean I wouldn’t give the food in here to my dog to be honest with you. Not all meals, some of the meals are nice but the vast majority of them, I wouldn’t feed them to my dog. It’s mainly chips all the while. Things like beefburgers, sausages, you know, them, things that Jamie Oliver were on about on the telly…And you think to yourself, yeah you come up here and you’ve got Jane on one hand saying, “Well you know, watch your diet”. And then you go back down to your wing and you get your menu and you think, well how can I watch my diet?” [PXID 6, Diabetes and psoriasis]

16. Maintaining a Healthy Lifestyle • Exercise • Aware of the benefits • Restricted opportunities • Closed vs. open • Competition for places • Competing Priorities

17. Negotiating Access • Management of Medication

18. Negotiating Access • Management of Medication Well it took them four months to give me the ointment to keep my psoriasis under control, and they were giving me stuff they were using when I was, a kid ten years old. Well, and after so long your body gets used to it and it just takes no effect. And this is what I were trying to explain to the doctor and he…what got me is, when I told him the name of it, cos I couldn’t remember the name of it, cos I've had that many treatments, so I couldn’t, but I rang the missus, “Can you tell me what the cream is like?” And she told me, and I went and seen him and he looked it up in their, the book, and the first words out of his mouth were, “Well it’s £60, you can’t have that”. [PXID 6, Diabetes and psoriasis]

19. Prisoner versus Patient • Treated as Prisoners 1st

20. Prisoner versus Patient • Treated as Prisoners 1st “More of the caring emphasis. At the end of the day, whether you’re a prisoner or not, you’re still a human being and if you are genuine with an illness, you should be seen, you should have your health care… I know it’s slow outside there, but at least you should be on the same level as out there, as in here, but we’re not. We’re behind.” [PXID 10, Obesity]

21. Prisoner versus Patient • Priority to be given to Genuine Cases

22. Prisoner versus Patient • Priority to be given to Genuine Cases “But I do find there’s a, if you want to call it, a culture or an attitude, an undercurrent within staff on the medical side really because they have so many lads that go along feigning illness to get out of work, they’re all tarred with the same brush, like I say brought down to the lowest common level and not treated as an individual.” [PXID1, Cerebral Palsy]

23. Access to Health Care Professionals • Triage delays contact

24. Access to Health Care Professionals • Triage delays contact “I mean, I once ended up with nearly having pneumonia. Because, you know, the triage nurse kept on fobbing me off with, telling me it were just a cold and I had a, a bit of a, you know, a chest infection and it’ll wear off, you know what I mean. And then when eventually I did get to see the doctor, the doctor told me off for not, you know, seeing him earlier, you know what I mean…” [PXID4, Back injury]

25. Conclusions • Opportunity to address health needs • But indifferent to EPP • Barriers to healthier lifestyle being adopted • Tension - Patient centred vs. surveillance • No voice in doctor-patient relationship

26. Implications • Awareness of the self management activities achieved realistically • Health professionals to exploit facilitators • Equivalent care = patient centred practice • Patient not prisoner