information line 0845 606 6040

Information Line 0845 606 6040www.expertpatients.nhs.uk


Roy JonesIndependent AdvisorEPP Implementation GroupBackground Arthritis Care and local Voluntary sectorECLN Associate


Delivery of EPP in England

• Role out through PCTs

• 28 teams

• 98% of PCTs active ( 4 refused)

• 750+ courses delivered

• 10,000+ participants

• Average 14 start

• 10 complete 4 sessions or more


Activity of participants pre course

37

25

18

7

0

5

10

15

20

25

30

35

40

%

retired not active unable to workdue to illness

paid employment part time vol work


Number of chronic conditions per participant

24%

28%

20%

12.60%

8% 7.50%

0%

5%

10%

15%

20%

25%

30%

1 2 3 4 5 6


Participation by ethnicity

6.9

93.1

0

20

40

60

80

100

%

Black & minority ethnicgroups

white


Age profile

0

5

10

15

20

25

30

%

18-25 26-35 36-45 46-55 56-65 66-75 76-85 85+

Age


Arthritis 39%

CHD or vascular disease 32%

Back pain or other pain 26% Diabetes 18%

Depression, anxiety or mental

Asthma or respiratory disease 13%

Main conditions reported

ME / chronic fatigue

Multiple Sclerosis Irritable Bowel Syndrome Psoriasis

Polio Cancer Epilepsy 0ver 300+ conditions

reported


Mainstreaming EPP as part of a integrated

chronic disease strategy


Secondary careElective surgery

rehab

Secondary careElective surgery

rehab

Benefits & employment

Benefits & employment

Condition specific treatment plan, education &

management


management Primary carePrimary care

Home based treatment

and monitoring systems



Voluntary sector

agencies

Voluntary sector

agencies

Social servicesSocial services

EPPSelf management

skills

EPPSelf management

skills

Patient forumsPPI

Patient forumsPPI

Private sectorservices

Private sectorservices


Mainstreaming EPP

• Needs to “part of how we do things”

• A key tool for developing equity• A partnership between local patient

organisations and PCTs

• Consistency and flexibility


We will provide• Teams will stay in place for next 2-3 years• Translation of core materials• Support on working with different cultural and social

economic groups• Consultancy and examples of good practice in developing

effective condition specific education.• A internationally recognised quality assurance framework

developed with LMCA.• Training and support to all organisations wishing to

develop self management• Develop learning networks to share good practice


Chronic Disease Managementand the

Chronic Disease Self-management Course

• KF Managing Chronic Disease– …self-management by patients in primary care is not

unusual in high quality providers across the US…

– The NHS and in particular PCTs, could learn from this and work with patients and carers to develop the skills needed for self-management

– The EPP is beginning to encourage such approaches, but it is in its infancy and not well funded.

– Pages 41-42


Kate MitchellAdult Services TeamDevon Social ServicesBackground in hospital social work department and interdisciplinary work


Pathway with a Long-term Medical Condition

• Diagnosis of MS 7 years ago

• Used local services including MS Therapy Centre

• Read widely

• Worked with my health professionals

• Kept to diet and exercise programmes

• Who needs an Expert Patients Programme?


What I found

• The tutors lived with MS and osteoporosis

• People owned their suggestions and acted on

them

• Mutual support from peers

• Growth in confidence


A key choice

• Most of us had strong feelings-

– Frustration, depression, anger

• Will we be victims?

– Muddling through

• Will we exert more control?

– Practice new skills


My choice

• My old excuses lost validity – Too tired– It’s too much trouble

• Fellow participants wereembracing a more positive outlook


Nothing New

The programme topics include– Diet– Exercise– Relaxation methods– Finding resources in the community– Communication

It is much easier to practice these with others who are similarly affected


Communication with Health Care Professionals

• It is easy to be overwhelmed by the frustration and, ‘There is no cure’

• The programme encouraged us to be– Realistic – Clear– Informed


Emotional support

• One tutor was quite ill, the group provided emotional support

• She knew and valued their support because it came from people with a personal understanding of living with a chronic condition


Comments from health and social care professionals

• Patients expertise is helpful• ‘Doing unto’ replaced by partnership. The patient

know his/her responsibility for making treatments work

• Active self-managers use resources appropriately• Patients regaining control encourages

professionals. Work is more enjoyable• Social workers are relieved when responding to

expressed need rather that devising services


Expert Patient Power

• Teignbridge lacked physiotherapy

• Now, after negotiation:– Exercise class devised by physio delivered by

assistant– Assistant gained NVQ 3– A similar course devised for people with

arthritis


Final Comments

• We can make conscious decisions about how we act. I choose to be an active self-manager

• Not everyone will be open to the concept• The courses should be available • There are benefits to participants, their

families and their health and social care workers


Participants improved health status

Self reported health

Energy

Activities and social role

Health distress

Fatigue


Aerobic exercise

Stretching and strengthening

Cognitive symptom management

Communications with doctors


Person living with long term illness and their family


management


management

Peer educatorsPeer educators





Education and support for careers

Education and support for careers

EPPSelf management skills

Confidence building

EPPSelf management skills

Confidence building

Benefits & employment support and information

Benefits & employment support and information

Tests & Diagnosis

Tests & Diagnosis

information line 0845 606 6040

Documents

information line

confidence slide

flexibility slide

participant slide

ethnicity slide

chronic condition slide

good practice slide

interdisciplinary work