What is the Programa Paciente Experto (PPE)?
• PPE is a self-management course that helps people who live with long-term health conditions to manage their illness better on a day-to-day basis
• PPE courses are based on research from the US and UK, it is an evidence-based intervention that has been rigorously tried and tested. The Programme has been shown to be effective in helping to both improve quality of life and positively aid health services as a whole
• PPE courses are being mainstreamed throughout Spain since 2006
Who is the PPE aimed at?
• Anyone over the age of 18 living with a long-term health condition. A condition is considered long-term if the patient has had it for 12 months or more, or where a condition is expected to last more than 12 months
• There are plans to expand the programme into areas such as carers, ethnic minorities, mental health, people with learning difficulties, children and parents
• PPE courses are delivered in local communities, encouraging Local Health Boards to target all members of society – including those in rural communities
What is the rationale behind the Programme?
• In Spain, there are approximately 30 million people who have a long-term health condition. The focus has moved from acute diseases to chronic conditions and this needs to be addressed
• One in three adults in Spain have one or more chronic health conditions. 80% of those who use the Public Health Services have long-term conditions and are therefore recurrent users
• Life expectancy has increased by 30 years over the last century. As life expectancy continues to lengthen, the incidence of chronic illness will rise
• Living with a long-term health condition can often mean physical and psychological difficulties for individuals and their families, as well as socio-economic problems, reduced quality of life and sometimes social exclusion
• The key priority is now about having a population who are better informed about what services they can expect, what their responsibilities are and what they can do for themselves
Is the PPE a new initiative?
• Self-Management programmes have been running in the USA since the 1970s. Much of the research and development on self-Management has been carried out by Professor Kate Lorig and her team at the Medical Research Centre, Stanford University, California, USA
• Mid 1990s - Stanford developed a generic Self-Management course known as the Chronic Disease Self-Management Course (CDSMC), this generic course has been branded as the Expert Patients Programme (EPP) in the NHS and as Programa Paciente Experto in Spain
• 1994 - Arthritis Care led the introduction of lay-led self-management in the UK. The arthritis self-management course is called ‘Challenging Arthritis’
• 1999 – In England an Expert Patients Task Force, chaired by the Chief Medical Officer, Professor Liam Donaldson, was set up to review Self-Management opportunities. Membership included representatives of the medical profession, non-governmental organisations and experts in the fields of self-management training and research
• 2001 – The final report "The Expert Patients Programme (EPP) – a new approach to chronic disease management for the 21st Century" led to the implementation of a 2 year PPE pilot project to introduce generic lay-led self-management programmes hosted in Primary Care Trusts throughout England
• 2004 - Lessons learned from the evaluation of the pilot sites and elsewhere were used to roll-out PPE into other LHBs
• 2006 – In Spain, five pilot courses were established in Murcia Community.
• 2007 - Mainstreaming throughout Public health Services and social care will be achieved, through the delivery of 60 courses in the 45 local health authorities of Murcia Region. These courses will be open to English speaking people living at Murcia, by a collaboration agreement between EPP and PEE.
What is lay-led self-management?
• Developing people’s confidence and skills (e.g. problem solving and decision making) to take control of the daily management of their illness
• Achieving the greatest possible quality of life by working with professionals in order to make the best use of available resources
• Dealing with the consequences of the illness
• Health professionals working in close partnership with patients
What is an Expert Patient?
• Expert Patients are people living with a long-term health condition who are able to take more control over their health by understanding and managing their conditions, leading to an improved quality of life
• The PPE builds on the principle that people with long-term health problems know best about how their condition affects the way they feel, their lifestyle and their ability to accomplish the activities that are important to them
How long is the course?
• The course consists of six weekly sessions
• Each session lasts about 2½ hours
What happens when the course finishes?
• Very often groups continue to meet on a regular basis. Strong friendship support networks are built up. Feedback has shown that patients often find it easier to discuss their anxieties/concerns with people outside of their close family circle
Who leads the sessions?
• The courses are delivered by two trained lay tutors, who have experience of making life changes because of living with a long-term condition
• The majority of tutors are volunteers who have previously attended a six-week course who want to be involved in the programme to ‘give something back’
• The delivery is from a scripted course manual
• The PPE programme is underpinned by a strict quality assurance training framework
How many people are on each course?
• Ideally each course has between 15-20 participants
Is it disease specific?
• No, the course applies very well to people with any physical or mental health conditions
• There are many advantages to running courses for people with a mix of different conditions
How can it be effective if it’s not disease specific?
• People living with long-term health conditions have problems specific to their individual illness but they also share common needs, similar concerns and problems in their daily lives
• People with long-term health conditions must deal not only with their symptoms but also with the impact these have on their lives and emotions
What are the benefits to patients?
• A renewal of confidence in managing their lives despite chronic disease
• A better relationship with their healthcare professionals
• Learning useful techniques that can help daily living – helping people take active control
• Increased use of health promoting techniques e.g. taking regular exercise and relaxation
• A loss of fear for the future
• A better knowledge and understanding of their symptoms
• Help to regain control over their physical and emotional well-being
• Development of a friendship support network
• Slowing of physical deterioration and improvements of psychological state
• A reduction in the number of visits to health professionals
Does it undermine the advice given by health professionals?
• No. The expertise of health professionals is just as important in treating chronic disease when patients are taking or have taken part in the programme
• PPE courses are designed to enhance regular treatment and disease specific patient teaching and education programmes delivered by health professionals
• Working in partnership with your healthcare professional’ is one of the activities covered on the course
Will it increase my workload as a healthcare professional?
• US evidence indicates people who have gained self-management skills make fewer visits to their GP and to outpatients clinics. There are also fewer A&E and hospital admissions
• The first UK reports on internal monitoring of PPE in England show similar findings:
• GP consultations decreased 7%
• Outpatient visits decreased by 10%
• A&E attendances decreased 16%
• Pharmacy visits increased by 18%
Is the aim of the programme just to save money for the Public Health and Social Service?
• No. The prime objective is to provide people living with a long-term health condition, who want to gain a greater measure of control over their lives, the means to do so. People living with chronic illnesses are often in the best position to know what they need to manage their own condition
• Providing people with the necessary self-management skills can enable them to make a tangible impact on the quality of their lives
How will the PPE be of benefit to health professionals?
• It will help patients to make more appropriate use of the health and social services available
• Fewer visits from patients but improved relationships with them
• Patients who have improved quality of life
• Development of patient networks – patients who can support other individuals who are developing similar conditions
• Better use by patients of recommended medications and treatments
