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The qualified patient

Establishing self-management courses for people with long-term health conditions

An L plate being torn apartAccording to Department of Health (DH) estimates, there are over 15m people living with one or more long-term health conditions (LTC) in England, and the number of sufferers is predicted to increase by one million every decade. Along with an ageing population, this means that the NHS faces increasing pressure on frontline services.

Self-management and self care were central to the previous Government's vision for the NHS: there was a strong consensus to place the patient and his family at the centre of the healthcare agenda, giving them more say and control. Lord Darzi's review of the NHS (published in 2008) emphasised the need to educate people about their own lifestyle and how the choices they make have a direct impact on their health.

Encompassed in this approach is the commitment to expand the provision of self-management courses in England. In 2007, the DH established the Expert Patients Programme as a Community Interest Company (EPP CIC) to 'increase EPP course capacity from 12,000 course places a year to 100,000 by 2012.'

Currently, EPP CIC delivers self-management courses through Primary Care Trusts (PCTs) and other health providers who can choose the level of support they require: whether to commission the EPP CIC to run courses or to organise the course themselves and buy in specific components, such as training assessments or course materials.

Self-management courses
EPP CIC self-management courses help people to develop the skills and confidence needed to manage their health condition better on a daily basis, making them less dependent on health and social care services. The course content focuses on five core self-management skills: problem solving; decision making; resource utilisation; developing effective partnerships with healthcare providers, and taking action.

Self-management enables people to develop their communication skills, manage daily activities that may prove stressful, interact better with the healthcare system, better utilise health resources available to them, plan for the future, increase exercise and make changes to diet and manage fatigue, sleep, pain, anger and depression.

The majority of courses are run over six weekly sessions of two and a half hours to groups of up to 16 people by tutors and specially trained volunteers with their own experience of living with an LTC. Central to the EPP CIC course ethos is the recognition that people with all kinds of LTCs are dealing with similar issues on a daily basis and share the need to develop coping strategies.

Course benefits
This year EPP CIC launched important research detailing evidence that self care reduces costs for the NHS and significantly improves the lives of people with LTCs. The report, which focuses on new approaches to gaining major efficiencies, puts forward a clear model for the commissioning of self care support services, which will provide a truly patient centred service with the potential to realise the full economical benefits of self care support.

Using existing literature on self-management, as well as conducting our own research through questionnaires, focus groups and in-depth interviews, EPP CIC has been able to provide illustrative examples of how economically beneficial EPP could be to the NHS.

Key findings from the Health Utilisation Research:
• An EPP course could save up to £1,800 per person. With over 15m people living with LTCs in the UK, this could equate to potentially £27bn in cost savings for the NHS. If only 1m people benefited, then nearly £2bn of cost savings could potentially be achieved
• People who are supported to self manage have fewer hospital admissions and spend less time in hospital
• 36 per cent of participants reported a reduction in medication after attending a course. The cost savings associated with this have yet to be quantified but would be additional to the numbers quoted above
• Over 50 per cent of participants reported a reduction in unscheduled GP visits, and over 49 per cent of participants now have fewer A&E visits.

Improvements in partnerships with doctors are among the key findings of research carried out by the National Primary Care Research and Development Centre in March 2007, which also identified improvements in LTC patients' self-efficacy, self-reported energy, quality of life and psychological wellbeing. The research also identified reductions in costs of hospital use (in-patient and day case) and found the course to be cost-effective, as the expense of sending people on the course was recouped from savings elsewhere in the system.

DH internal monitoring of questionnaires from participants who completed the programme highlighted further benefits for patients and healthcare professionals. Four to six months after completing the course:
• GP consultations decreased by 7 per cent
• Outpatient visits decreased by 10 per cent
• A&E attendances decreased by 16 per cent
• Pharmacy visits increased by 18 per cent.

Course expansion
The generic Chronic Disease Self Management Course (CDSMP) — originally developed at Stanford University, California — is open to anyone with an LTC. It was introduced in the UK through the voluntary sector in the 1990s and was piloted by the EPP (when it was a DH managed programme) in the NHS from 2002–2005 before being rolled out through PCTs from 2005.

In response to the rapidly changing NHS and the evolving needs of its target audience, EPP CIC has developed and expanded its portfolio of products. EPP CIC courses are aimed at a wide range of people, reflecting diversity in terms of different health conditions, age groups, geographical locations and ethnicity. EPP CIC has bilingual trainers and tutors and the course is available in nine languages.

In response to feedback about what people want from self care, EPP CIC has developed a number of other courses to meet different needs. These include a course for carers (Looking after Me), a course for people living with or in recovery from a mental health condition (New Beginnings) and a Persistent Pain Programme, among many others. An online version of the CDSMP was launched in 2009 and a course specifically adapted for adults with learning disabilities is also now available.

In partnership with the Health Foundation, EPP CIC has developed a whole system approach to self-management under the Co-Creating Health initiative, called Synergy, which brings together expertise and research in self care to optimise outcomes in three core areas: for the service, the patient and the clinical teams.

Within the patient-centred 'whole-system' transformation programme, Synergy 'Self Management for Life' programmes, which were originally developed for EPP CIC under the Co-Creating Health initiative, offer a choice to both patients and commissioners and reflect EPP CIC's commitment to development and research.

In response to a request from the DH for a self-management course for young people, a series of workshops were developed for people aged between 12 and 18 years old. The workshops, called Staying Positive, were designed through direct consultation with young people and are run by trained young facilitators who also have experience of living with an LTC. 

Time and resources are also being invested to support people on Incapacity Benefit to get back into work. Through the Department of Work and Pensions' 'Pathways to Work' initiative we have secured contracts to deliver condition management training, involving individual case management and demonstrated the many flexible ways in which the thinking behind self-management techniques can be adapted.

EPP CIC is the lead administrative organisation delivering a three year DH programme for adult, unpaid carers, Caring with Confidence, which aims to improve not only the health and wellbeing of the carer but also of the person he or she cares for. This programme is part of the Government's New Deal for Carers and the National Carers Strategy: born, like EPP CIC, out of the White Paper Our Health, Our Care, Our Say. 

EPP CIC has been working closely with PCTs and voluntary sector organisations to tailor courses to meet the expanding needs not only of people living with LTCs through CDSMP but to promote self care and healthy wellbeing to everyone. In June 2008, EPP CIC took over the NHS Working in Partnership Programme's (WiPP) suite of self-care resources including the Self Care Connect website (selfcareconnect.co.uk). Included in this are two self care training courses: 'Self Care for You' and 'Self Care for Primary Care'. Both provide skills and advice to help people engage in self-care to improve their lifestyle and develop positive health behaviours.

Quality assurance
Given the necessity to increase the number of course providers in order to achieve the desired expansion in course places, EPP CIC believed it important to find some way of guaranteeing the quality and integrity of all courses offered. It has introduced the use of robust outcome and quality tools using fully validated questionnaires. It has also supported the development of a robust quality assurance framework that establishes the values, principles and processes underpinning EPP CIC led self-management programmes. The result is 'Stepping Stones to Quality' (SS2Q), a straightforward and practical quality assurance framework designed to ensure all programmes meet the minimum expectations of good practice.
EPP CIC has also received accreditation from the OCN Credit 4 Learning, which means that once tutors receive training, mentoring and feedback from their first two successful courses they are entitled to receive Level 3 learning credits (the equivalent of A or AS level standard).

EPP CIC is well on the way to achieving the Government's target, with over 50,000 people having attended EPP courses in England to date and 1,700 volunteer tutors being trained.

Over the next few years, EPP CIC will be the benchmark organisation for the new corporate infrastructure — enterprise with a social edge. It is our intention that, in just a few years, referrals to EPP CIC courses will become as routine as prescriptions for painkillers — the only difference being that the course will change people's lives without drugs.

The Author
Simon Knighton
is chief executive of the Expert Patients Programme Community Interest Company (EPP CIC)

To comment on this article, email pm@pmlive.com

16th November 2010

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