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Supporting Self Care 20/2/06 11:40 Page ofci Supporting people with
long term conditions to.
Self Care
A guide to developing local strategies and good practice Improving Care
Improving Lives
Supporting Self Care 20/2/06 11:40 Page ifcii DH INFORMATION READER BOX
Partnership Working Best Practice Guidance ROCR Ref:
Gateway Ref:
Supporting people with long termconditions to self care – A guide todeveloping local strategies andgood practice Department of Health PCT CEs, NHS Trust CEs, SHA CEs,Care Trust CEs, Foundation TrustCEs, Medical Directors, Directors ofPH, Directors of Nursing, PCT PECChairs, NHS Trust Board Chairs,Special HA CEs, Directors of HR,Directors of Finance, Allied HealthProfessionals, GPs,Communications Leads,Emergency Care Leads, LocalAuthorities Local Authority CEs, Ds of SocialServices, Voluntary Organisations Improving care for people with along term condition is one of thebiggest challenges facing healthand social care organisations anddemands wholesale change inthe way they think, train anddeliver/design services. The roleof self care is crucial in peoplemaintaining good health andtaking care of their condition.
Supporting self care providesbenefits all round.
Cross Ref
Supporting People with LongTerm Conditions: An NHS andSocial Care Model to support localinnovation and integration Long Term Conditions TeamPrimary CareDepartment of HealthRoom 4N26Quarry House, Quarry HillLeedsLS2 7UE0113 254 5008 For Recipient Use
Supporting Self Care 20/2/06 11:40 Page i Supporting people with
long term conditions
to self care
A guide to developing local strategies and good practice Improving Care
Improving Lives
Supporting Self Care 20/2/06 11:40 Page ii What ‘self care' means
In this document, the term ‘self care' includes both self care and self
management. Self care is all about individuals taking responsibility for
their own health and well-being. This includes: staying fit and healthy,
both physically and mentally; taking action to prevent illness and
accidents; the better use of medicines; treatment of minor ailments
and better care of long term conditions. The term ‘self management'
has been defined by Rethink as: "whatever we do to make the most of
our lives by coping with our difficulties and making the most of what
we have. Applied specifically to people with a schizophrenia diagnosis
it includes how we manage or minimize the ways the condition limits
our lives as well as what we do to feel happy and fulfilled to make
the most of our lives despite the condition."
Supporting Self Care 20/2/06 11:40 Page 1 Developing a self care support strategy
Skills and training – helping people to take care of their condition
better
Information – more informed patients are more empowered people 25
Tools and devices – helping people to monitor their condition
and control their medicines
Support networks – boosting confidence and getting involved
in the community
Want to know more about self care?
Supporting Self Care 20/2/06 11:40 Page 2 Self care – the patient's perspective
Self care by definition is led, owned and done by the people themselves.
It is the activities that enable people to deal with the impact of a longterm condition on their daily lives, dealing with the emotional changes,adherence to treatment regimes, and maintaining those things that areimportant to them – work, socialising, family. The NHS cannot do selfcare to people, but what it can do is create an environment wherepeople feel supported to self care. This can be done through developingorganisational structures and networks, appropriate information,interventions and technology, to give people the opportunity toimprove their quality of life, and feel that they are still contributing intheir community.
Self care support can be effective in two ways. It can be generic,supporting a number of different types of people individually or ingroups. This is exemplified by the NHS Direct Self Care Guide and theExpert Patients Programme. Self care support can also be individualisedand specific to a person's needs and circumstances, based on anunderstanding of the person's beliefs, capability, knowledge base,acceptance of their condition, attitude, confidence and determination.
Often these aspects differ from person to person and fluctuate overtime. For example, an individual could be newly diagnosed with a longterm condition, or seeking self care support following an acute episode,or a life-changing event. It is also important to understand a person'smotivation to self care – for example, do they want to be more active,return to paid employment, reduce levels of pain, or maybe to havefewer admissions to hospital? Often people articulate this withstatements such as, "I don't want to feel this way". It is important towork with people to achieve the treatment outcomes and longer termgoals that they want, at a pace they want, with the support they want.
Some illustrations of individualised self care support would be thePersonal Health Guides as proposed in the Choosing Health WhitePaper; My Healthspace, which will have information for individualsbased on their needs; and personalised Care Plans following an acuteillness or for people with long term conditions.
Local self care strategies should be based on a combination of genericsolutions, good planning, and individualised self care support thatpeople may want to be able to improve and maintain a sense of controland well-being. People should be involved and consulted in thedevelopment of an integrated package of self care support, and localfacilities should be reviewed based on feedback from people who usethese. If self care is based on this approach it is likely to be moreeffective, and achieve significant benefits for people as well as the NHS.
Supporting Self Care 20/2/06 11:40 Page 3 There are over 15 million people in England with longerterm health needs. They are a large and growing group.
Recent national surveys have shown that we need to domore to empower these people with long term healthand social care needs through greater choice and more control over theircare. Health and care services still do not focus sufficiently on supportingpeople to understand and take control at an early stage of their condition. Asa result, resources are wasted, medication goes unused, people's healthdeteriorates more quickly than it should, and quality of life is compromised. People with longer-term conditions have better lives when they aresupported to take care of their conditions themselves. If people have a clearunderstanding of their condition and what they can do, they are more likelyto take control themselves. This is what people have told us they want. Oneof the priorities from participants in the ‘Your health, your care, your say'consultation was for services based around their needs which help them takecontrol of their health, support their well-being; and enable them to lead anindependent and fulfilling life.
That is why helping people to take control is a key theme of the ‘Our health,our care, our say: a new direction for community services' White Paper. Theproposals in the White Paper and this comprehensive self care guide will helplocal organisations develop local strategies to deliver self care support forpeople with long term conditions. Many patients, especially those with longer-term conditions, do not want tospend anymore time than is necessary visiting their GPs and going to hospital.
Many are already experts on their conditions. We need to empower thesepeople to manage their own care, with the help of skilled healthcare staff.
We need to reach the stage where doctors, nurses, pharmacists, allied healthprofessionals and others recognise that self care is a real choice and activelysupport the individual in this choice.
Delivering effective self care support also needs greater cooperation betweenorganisations with PCTs, GPs, local authorities and others working togetherwith the community, voluntary and private sectors to provide local solutionsto embed supported self care into service delivery as a practical option. Thesechanges are vital if we are to create a health and social care system that is fitfor the 21st century.
Norman WarnerMinister of State for NHS Reform Supporting Self Care 20/2/06 11:40 Page 4 Supporting Self Care 20/2/06 11:40 Page 5 Self care is something that we do for ourselves. This may be self care to livehealthy lives, such as brushing our teeth, or looking after ourselves toprevent illness, or helping ourselves to recover from short term illness.
However, for people living with a long term condition self care can becomea more fundamental part of their everyday lives, to ensure independence,self worth, and the ability to lead as near a normal life as is possible.
There are a range of approaches to self care. The NHS can support people intaking these through a partnership with the person self caring, recognisingthat they should make the choices, decisions and take the actionsthemselves.
Self care is an under-utilised resource. People with long term conditions areexperts in themselves and how their condition affects them and their lives.
People should be supported and enabled to self care. This is not just abouta change in service provision, but about a cultural change, allowing patientsto be partners in their care, letting them decide what support they need,when they need it and how.
The NHS will need to think differently to be able to be responsive to thoseneeds, respecting and valuing the contribution people can make to improvehealth.
The various approaches to self care and how the NHS can support people touse them are set out in this document. We welcome this guide which willbegin to shape local organisations in delivering self care support for peoplewith long term conditions.
Harry Cayton
National Director for National Director for Patients and the Public Primary Care Supporting Self Care 20/2/06 11:40 Page 6 Supporting Self Care 20/2/06 11:40 Page 7 People with long term conditions want to live as normal a life as possible.
There is a growing body of evidence that demonstrates what works forthem and how they can achieve this. This document draws on that evidenceand explains how health and social care services can support self carethrough an integrated package consisting of a range of elements at a locallevel, providing an adequate number of options for people to choose from.
These elements will include self care information, self monitoring devices,self care skills education and training and self care support networks. Theseelements could be provided by a mix of providers, including private andvoluntary sector agencies. Delivering a self care support package will entailtraining of professionals and practitioners to raise their self care awarenessand skills to develop a better partnership between themselves and thepublic.
This is a time for organisations to be innovative and creative, working across health, social care and voluntary sector boundaries. We can learn a lot from the way social care and voluntary sector organisations pioneer services.
Why is self care important?
When people self care, and are supported to do this, they are more likely to: ✔ experience better health and well-being ✔ reduce the perceived severity of their symptoms, including pain ✔ improve medicines compliance ✔ prevent the need for emergency health and social services ✔ prevent unnecessary hospital admissions ✔ have better planned and co-ordinated care ✔ remain in their own home ✔ have greater confidence and a sense of control ✔ have better mental health and less depression.
Supporting Self Care 20/2/06 11:40 Page 8 Supporting people with long term conditions to self care How does the health service benefit?
Supporting self care should already be part of local plans. Health andsocial care agencies, practitioners and professionals now have severalincentives to provide an integrated resource to support self care intheir local economies. By investing early in local strategies, value formoney will be improved and the long term conditions PSA target1 andolder people's target2 will be delivered.
International evidence3 from some approaches to self care support alsosuggests that investment could reduce: • visits to GPs by up to 40% • visits to outpatient clinics by up to 17% • visits to A&E units by up to 50% • drug expenditure Patients are the health service's biggest untapped resource. If patientsand the health service are to benefit, then services need redesigning sothat patients and the public are truly partners and co-producers intheir care.
What do we want to achieve?
Our goal is to create a fully integrated system, with appropriately trainedfront-line staff, to enable people with long term conditions to take greaterresponsibility for their own care. This will be done through the following: • Providing understandable and easily accessible information that will enable people to: – assess their own condition – know what is ‘normal' for their condition – know when, where and how to get further help and advice.
• Helping people to understand why it's so important they take their medicines and how to do so.
To improve health outcomes for people with long term conditions by offering a personalised care plan forvulnerable people most at risk, and reduce the number of emergency bed days by 5% by March 2008 throughimproved care in primary and community settings.
To increase the number of people over 65 supported to live at home by 1% a year in 2007 and 2008.
Self Care – A Real Choice, DH, January 2005 Supporting Self Care 20/2/06 11:40 Page 9 Supporting people with long term conditions to self care • Enabling people to recognise and monitor their symptoms.
• Allowing people to undertake strategies to aid their recovery.
• Enabling people to book routine tests as and when they need them, rather than requiring them to go to a GP for ‘permission'.
• Supporting people to have the confidence and skills to better deal with their condition.
• Involving people in interpreting results so they understand what action needs to be taken and why.
Supporting self care requires a major transformation in health andsocial care services and means challenging the organisational structureand staff roles we currently use to deliver services. The approach set outin this guide will play a key role in bringing about and sustaining thischange. It focuses on what healthcare organisations can do to developand implement a self care strategy to support people with long termconditions.
Key local actions
Local strategies to support people with long term conditions to self carerequire everyone who is involved in the process to start thinkingdifferently. In developing such strategies it is important that you: • Make sure front-line staff and care professionals receive appropriate training so they understand the principles of self care.4 • Identify what information people may need in the future so they have access to the required information, as and when they want it,and are supported to use it.5 • Ensure that health and social care professionals have details about other community contacts and support networks that people canaccess. • Make sure patient education and training programmes are included in the range of self care options.
Case management competences framework for the care of people with long term conditions, DH, August2005 – specifically the Supporting Self Care, Self Management and Enabling Independence competences.
Better information, better choices, better health, DH, December 2004 Supporting Self Care 20/2/06 11:40 Page 10 Supporting people with long term conditions to self care • Make sure that self care support options also include access to self monitoring devices and assistive technologies.
• Provide access to services in a co-ordinated and consistent way, including health care, social care, benefits, housing, transport andvoluntary and community services.
Supporting Self Care 20/2/06 11:40 Page 11 Developing a self care
support strategy
Key actions
When developing a self care support strategy for your area, thefollowing should be considered: • Involve patients and the public through new and established mechanisms – any strategy needs to be based on their requirementsand preferences.
• Assess the self care information and support networks which already exist within your health economy. Are there any gaps in knowledge,availability and quality? • Ensure that the EPP is fully integrated into your strategy.
• Invest in people and resources to support partnership-building across health and social care communities. Make good use of Local StrategicPartnerships.
• When re-designing your services, work with all agencies, the community, the voluntary sector and people with long termconditions and their carers.
• Involve patients, lay experts and appropriate local professionals in identifying best practice in approaches to needs, information andcommunication.
• Think about the best way of commissioning self care support approaches to meet local needs.
• Work with your Local Pharmaceutical Committee to ensure that community pharmacists are using the new contractual flexibilities tosupport self care and medicine management.
• Explore what national initiatives link into self care support initiatives, for example: assistive technologies, integration with Social Services,Partnerships for Older People Projects, Connecting for Health,Community Pharmacy/Medicines Management, Patient Choice andthe National Primary Care Development Team (NPDT).
Supporting Self Care 20/2/06 11:40 Page 12 Supporting people with long term conditions to self care Why we need to focus on self care support
When someone has been diagnosed with a long term condition, eventhough this may not be clear to them at the time, they will be embarkingon a life-long journey. This journey will involve the development of anunderstanding of their needs in terms of both internal resources andexternal support in order to incorporate the condition and its managementinto their lives such that they can enjoy as full a quality of life as possible. This journey requires several fundamental psychological and social changesto engage in active participation and collaborative relationships with theirfamilies or carers and a range of health and social care professionals.
A strategy to support people with long term conditions to self care shouldreflect these psychological and social changes and incorporate a wide rangeof approaches and models of self care support, including finding ways ofproviding funding, information, facilities, equipment and technology toforge its development.12 Not everyone wants to take a proactive part in their own care. It's important that individual preferences about who takes decisions about different aspects of health and healthcare are respected too.
Supporting self care across the whole system
Self care of
minor ailments
Professional careof minor ailments Self care for maintenance of
Self care of
good health and lifestyle and
Professional care prevention of ill health
long term conditions
of long termconditions Self care of
Professional care Self care support
■ Patient education ■ Self diagnostic tools ■ Self care skills training ■ Self monitoring devices ■ Health & social care information ■ Peer support networks ■ Care plan approach ■ Home adaptations Derek Wanless, Securing Good Health for the Whole Population, Feb 2004 Supporting Self Care 20/2/06 11:40 Page 13 Supporting people with long term conditions to self care How we will achieve sustained self care
We need to promote a change in perception about the role of everyoneinvolved in supporting people with long term conditions. These changes inrole need to take place not just within the health and social care services,but in the individuals with a long term condition and their carers. To achieve this we need to recognise and understand what motivatespeople to take care of themselves. The impact of any long term conditionand the individual's ability to optimise self care are related to: • The perceived or actual severity and nature of their underlying • The short, medium and long term impact of the condition on the individual's ability to undertake normal activities of daily living.
• The person's beliefs, understandings and expectations around the condition – and the perceived role health and social care can play inproviding a cure, care or support.
• How much the patient participates in or avoids active self caring as a result of these beliefs.
• The effect of symptoms, loss of control and loss of role on a patient's morale and mental health and the way in which they want to live theirlives (their aspirations).
• Healthcare professionals' beliefs and expectations in providing care, cure People with long term conditions will not fully engage with self care untileach of the above has been discussed and they have a clear understandingof the role of each factor in their overall condition. People can only beginto embrace self care once they have become reconciled to the fact thattheir condition is being optimally managed medically.
If we are to embed this approach into our systems and change processesand their outcomes, we need to think differently and train differently.
Putting people at the centre of our services
A new approach based on outcomes for people, and health and social careprofessionals working together requires a radical shift in the balance ofpower, with the patient at the centre. Supporting Self Care 20/2/06 11:40 Page 14 Supporting people with long term conditions to self care A patient-led system can be achieved by: • Fully involving and consulting with people to plan their care according to their understanding, abilities, needs and preferences.
• Organising flexible, responsive services based on a person's needs and • Recognising that health and social care professionals are part of an interdependent system where visions, objectives and resources areshared.
• Ensuring there are no artificial boundaries between agencies and organisations, so that individuals experience a seamless care pathway.
Providing people and their carers with choice as to how their care is personalised is a central tenet of a patient- Integrating care and support across sectors
We must work together across care services to deliver high-quality, modernhealth and social care. Quite often, people have a range of health andsocial needs. For example, incorporating self care of a long term conditioninto someone's life may require psychological support, advice about re-training, adaptation, employment, benefits and housing advice.
There is a growing body of evidence showing that social care can reduce,prevent or replace the need for hospital services. Studies have found thatan increase in the use of community social and health services reduces theuse of hospital services – an increase in the provision of these services canimprove not only people's immediate outcomes, but also their future healthoutcomes.13 For example, one primary care trust with a specialist falls servicereduced the number of people admitted to hospital after a fall by 12%,saving around 1,000 bed days a year.14 The National Falls Collaborative, in2003, achieved a reduction in falls of 32% and is now in its third year. This issomething we cannot ignore.
King's Fund, Social Care Needs and Outcomes, July 2005 Dr Gillian Dalley, The Counsel and Care National Falls Survey: Progress in Implementing Standard 6 of theNational Service Framework for Older People, July 2005 Supporting Self Care 20/2/06 11:40 Page 15 Supporting people with long term conditions to self care Timely diagnosis and treatment, plus rapid access to services when
necessary
There are some conditions, such as rheumatoid arthritis and schizophrenia,for which early diagnosis and treatment can make all the difference to aperson's quality of life. If the condition gets worse, everything should bedone to ensure it is dealt with quickly: prompt diagnosis, pain and symptommanagement, appropriate treatment and information all have short- andlong-term benefits. Enabling people to access healthcare as they require it isa powerful incentive for people in terms of self care.
Getting patients involved
One of the best ways to build a patient-centred health and social careservice is to get patients involved in shaping it.
People who have lived with long term conditions have the valuableknowledge and experience of living with their condition which they canshare. By involving and consulting with them during the process ofdeveloping local healthcare policies and practices, we can gain a uniqueperspective not available to most healthcare professionals. The delivery of services can often be improved through imaginativesolutions that ensure people's needs are met. Self care is by definitionundertaken by and for the benefit of the individual – so services should bedeveloped to support this.
How supporting self care can help improve the quality of people's lives
Self care support
Self care support
■ Skills training ■ Skills training ■ Tools & devices ■ Tools & devices Support networks ■ Support networks Self care
More active
Self care support
■ Skills training ■ Tools & devices ■ Support networks Supporting Self Care 20/2/06 11:40 Page 16 Supporting people with long term conditions to self care The diagram shows how better skills education and training, information,tools and devices, and support networks can all play a role in helpingpeople with long term conditions to become more confident when it comesto self caring. As people's confidence grows, they become more active andmore interested in helping themselves.
Some areas of the NHS need to ‘catch up' with social care organisations interms of delivering patient-focused services. It is for this reason that thispublication is aimed mainly at health service organisations. Building on theNHS and Social Care Long Term Conditions Model15, it focuses on howpeople can be supported to self care through skills and training,information, tools and devices, and support networks.
In the following chapters we explore each of these areas, setting out whathealthcare organisations and professionals need to do to achieve specificgoals for people with long term conditions.
Supporting People with Long Term Conditions – An NHS and Social Care Model to support local innovationand integration, DH, January 2005 Supporting Self Care 20/2/06 11:40 Page 17 Skills and training – helping
people to take care of their
condition better
Key actions
To help people gain the skills and understanding to care for theircondition better: • Offer patients self care support, disease-specific education and self management skills; for example, the Expert Patients Programme (EPP)should be available to people with long term conditions through theNHS by 2008.
• Find out about and evaluate with patients other condition or disease specific education programmes, such as DAFNE and DESMOND forpeople with diabetes.
• Make sure you engage appropriately trained front-line staff who understand the principles of self care to help boost patients'confidence.16 Putting patients at the centre
To participate fully in taking care of their own health, every patient needsto understand the role they have to play and feel they are able to take partin the decision-making process. Without the confidence, skills and insight toseek out information, understand, question and sometimes challenge healthand social care professionals, people cannot feel in greater control of theircare.
There are many different educational approaches that can help to supportpeople with long term conditions. These include the EPP, health literacyprogrammes and condition- or disease-specific education. There is clearevidence that disease-specific education can have a profound effect onpeople's symptoms and health, significantly improving their quality of life.17 Case management competences framework for the care of people with long term conditions, DH, August2005 – specifically the Supporting Self Care, Self Management and Enabling Independence competences.
Structured Patient Education in Diabetes, DH/Diabetes UK, June 2005 Supporting Self Care 20/2/06 11:40 Page 18 Supporting people with long term conditions to self care Most of the time, it is people rather than professionals who make the day-to-day decisions about taking care of their condition.
The Expert Patients Programme (EPP)
The NHS Expert Patients Programme and other self care skills trainingcourses provided by voluntary and community sector agencies (often inpartnership with health organisations) help people with long termconditions to build their confidence and improve their quality of life.
They provide people with the skills to better manage symptoms such asdepression, anxiety, breathlessness and pain, and empoweringtechniques such as goal setting and problem solving which enablethem to live more fulfilled lives, independently and at home. Manypeople who attend the EPP course report a perceived reduction in theseverity of their symptoms, which then interfere less with their lives.
They also report improvements in their consultations with healthprofessionals.
In practice
Helping people with Parkinson's disease in Tyne and Wear
The Northumbria Parkinson's Disease Service was established in 1995and serves a population of 500,000. It operates an open-referral policy,which includes self referral.
All general/local and community hospitals hold clinics so that peoplewith Parkinson's disease do not have far to travel. Parkinson's diseasenurses run their own clinics in the same locations and offer home visitsand telephone support.
The service offers an eight-week education and support programmethat teaches people about their condition and symptoms. People withParkinson's disease attend the programme with their carer and canchoose which topics they would like to cover.
The team is also developing a Professional Care Guide to helpprofessionals promote standard practice across the catchment area.
To find out more, contact Annette Bowron, Nurse Consultant,
tel: 0191 293 4167
Supporting Self Care 20/2/06 11:40 Page 19 Supporting people with long term conditions to self care In practice
The COPD Passport for people with chronic obstructive pulmonary
disease
Central Cornwall PCT has developed a COPD Passport for people livingwith COPD. It was created in response to reports that many peoplewith COPD suffered from a debilitating fear of further exacerbation.
Not only did this result in them being repeatedly admitted to hospital,but it severely restricted the way they lived.
The COPD Passport was developed by patients and representatives inboth primary and secondary care at the first learning workshop of theNational Primary Care Development Team (NPDT) Long TermConditions Collaborative programme. A simple document, it givesadvice to help reduce the ‘fear factor' and enable patients to leadmore fulfilling lives. In addition, it provides paramedics and admittingstaff with important information in the event of the patientexacerbating, thus allowing him or her to be fast-tracked into theRespiratory Unit.
The COPD Passport has been used successfully in the Respiratory Out-patient Clinics and will be rolled out to selected GP practices for a trialperiod of six months. It will then be made available across the county.
To find out more, contact Katrina Clemes, Project Manager – NPDT Long
Term Conditions Collaborative, Central Cornwall Primary Care Trust.
E-mail: [email protected]
Supporting Self Care 20/2/06 11:40 Page 20 Supporting people with long term conditions to self care In practice
Getting patient advisors involved
Phase III of the National Primary Care Collaborative has put patients inthe role of ‘improvers'. Drawing on their experience, they have helpedto redesign the service, influenced change and delivered localimprovements. As a result, many patient advisors have seen their ownskills and confidence increase. They have learnt more about their owncondition, are helping others take care of their condition better andare engaged in wider PCT service developments.
The Diabetic Patient Advisor for Langbaurgh PCT attended groupeducation sessions run by a local diabetic specialist nurse. He nowoffers hands-on advice to people who have been recently diagnosedand advises on the group education sessions.
Malcolm Collier, team member and Diabetic Patient Advisor for theBristol North PCT team, says: "I try to get as involved as I can withissues relating to diabetes. It can be frustrating as improvement can beslow. Working with the Bristol North PCT team on the NPDT Long TermConditions Collaborative has been a breath of fresh air. Thecollaborative actually listens to my ideas, asks questions and is movingthings forward, having taken account of my views. I am happy to bepart of an initiative as refreshing as this and feel my input is trulyvalued." The role of professionals
During a consultation, professionals may not be used to asking themselveshow they can help a patient to manage their own condition. This focusneeds to change in a patient-led NHS. Professionals should be workingtowards the following: 1. To change the way consultations are conducted. Currently, there is a tendency to focus on identifying an illness, deciding how to treat it and making sure a medication regime is followed.
2. To enhance their own understanding, skills and confidence as they interact with people with long term conditions. A confident, well-informed patient is not a threat to professional practices. In most cases the person knows more about living with their condition thananyone else.
Supporting Self Care 20/2/06 11:40 Page 21 Supporting people with long term conditions to self care 3. To develop a more equal relationship. The professional/patient relationship is a meeting between two experts, sharing differentknowledge.18 4. To help modify the way people seek help by challenging their beliefs about their health and condition.19 A motivational style of discussionthat promotes contemplation of change can be helpful in supportingpeople through the process of planned lifestyle change towards optimalself care.
By sharing their experiences with others, health professionals may improve their own skills and empathy.
The role of PCTs and NHS trusts
1. To commit to training front-line staff. This is vital if we are to change the way we think about self care and the role of individuals in theirhealth care.
2. To work with local education providers to ensure that the appropriate type of training is developed and provided.
3. To understand the wide range of self care and self management skills training provided by the voluntary sector. Such services make a valuablecontribution.
4. To provide structured patient education as one of the many self care support options available.
Tuckett D, Boulton M, Olsen C and Williams A (1985) Meetings Between Experts: An approach to sharing ideasin medical consultations. London, Tavistock Publications.
"The exceptional potential in each primary care consultation suggests that four areas can be systematicallyexplored each time a patient consults – management of presenting problems; modification of help-seekingbehaviours; management of continuing problems; opportunistic health promotion." Stott and Davis (1979).
Supporting Self Care 20/2/06 11:40 Page 22 Supporting people with long term conditions to self care Supporting self care is key for the disease-specific National Service Frameworks (NSFs), such as the Diabetes NSF. Standard 3 of the Diabetes NSF aims to ensure that people with diabetes are empowered to enhance their personal control over the day-to-day care of their diabetes. Structured patient education and effective care planning play important roles in reaching this standard.
In practice
Development of comprehensive guidelines for methotrexate therapy
A rheumatology nurse practitioner, the rheumatology consultants, andthe head of pharmacy developed comprehensive guidelines formethotrexate therapy for patients with inflammatory arthritis atNorfolk and Norwich University Hospital.
An increased number of patients were attending secondary care formethotrexate injections after it was identified that some GPs werereluctant to prescribe and manage patients on injectable methotrexatein the community.
The rheumatology nurse practitioner: • participated in the working party which developed the guidelines for oral and parenteral Methotrexate for the treatment ofinflammatory arthritis, • developed an education programme for patient self-administration of subcutaneous methotrexate and; • organised study days for all health professionals.
This resulted in: • improved service provision for patients, • promoted existing shared care practice between primary and secondary care and; • addressed the safety issues around methotrexate therapy.
To find out more, contact Marie McGee, Lecturer in Adult Nursing,
University of East Anglia, tel: 01603 597 103, e-mail:
[email protected] or Carol Edwards, Deputy Director of Nursing and
Education, Norfolk and Norwich University Hospital, tel: 01603 286 633
Supporting Self Care 20/2/06 11:40 Page 23 Supporting people with long term conditions to self care The role of the Department of Health
One of the commitments in the White Paper20 states that at each stage ofthe professional education and regulatory process action should be taken tochange the underlying culture profoundly and encourage support forindividuals' empowerment and self care. The Department of Health will betaking forward work that not only creates a clear self care competencyframework for staff, but also embeds key elements, including values andbehaviours around assessment and support in appraisal and continuingprofessional development requirements. This will include: work with Skills for Health and Skills for Care to develop a self carecompetency framework for all staff; work with NHS Employers to embed self care in the Knowledge andSkills Framework, so that it is embedded in job descriptions/annualappraisals under Agenda for Change; work with the professional bodies to embed self care in core curricula.
Our health, our care, our say: a new direction for community services, DH, January 2006 Supporting Self Care 20/2/06 11:40 Page 24 Supporting people with long term conditions to self care Supporting Self Care 20/2/06 11:40 Page 25 Information – more informed
patients are more empowered
people
Key actions
• Find out, through new and established mechanisms, what information and support people with long term conditions want.
What formats and languages do they need? • Review the information you already provide for patients and carers, and decide what you need in the future: people need access to good-quality and comprehensive information they can understand, as andwhen they want it.
• Make sure that health and social care professionals know about other community contacts, associations and websites.
• Get involved with patient organisations and groups to understand the best way to provide information and services.
• Make good use of Local Strategic Partnerships to help with the sharing and distribution of information.
Putting patients at the centre
While information on its own is not enough to affect people's behaviour,quality of life or clinical outcome,21 there is good evidence to suggest thatbetter understanding of a long term condition can positively affect people'sunderstanding of their symptoms and long term health.
Much disease-specific information is written by doctors, who often describehealth conditions in pathological terms. However, information implicitlydesigned to support self care for certain conditions is available – forexample, The Back Book (www.coventrypainclinic.org.uk/spinalpain-thebackbook) and the Angina Plan (www.anginaplan.org.uk).
There is, however, a group of people who are less likely to have access tothe internet and tend to make little use of self care information.22 Transforming Chronic Care, HSMC Birmingham, 2005 Views on self care of people with long term conditions, DH, February 2005.
Supporting Self Care 20/2/06 11:40 Page 26 Supporting people with long term conditions to self care More must be done to help them understand and use information,especially if they have a long term condition or have low health literacy.
Improving people's knowledge and understanding is key to creating a patient-led NHS.
People need to know how to connect with the wider community andprofessionals working in GP practices, local hospitals and health centres,pharmacists, community groups, social groups and voluntary groups. Theymay also need support with finding the right housing solution or adaptingtheir own home to make living with a long term condition easier.
People do get information from professionals. But informal sources of information are trusted more and encourage self caring behaviours with greater consistency. (MORI, April 2005) Where to find useful information
People can find information – such as leaflets, videos and audio tapes,including those that focus on a specific disease or service – from manydifferent sources: • Workshops, courses, classes and self care support networks and groups (both local and national).
• Adult education facilities and libraries.
• The internet and online or digital services such as NHS Direct Online, HealthSpace and interactive TV.
• Some housing-with-care services, such as the Extra Care Charitable Trust, offer a well-being service that provides health advice andinformation for people living in their own homes. Visit:www.extracare.org.uk.
• Connexions provides advice on education, careers, housing, money, health and relationships for 13–19-year-olds in the UK and can helpyounger people with long term conditions. Visit: www.connexions.gov.uk.
Supporting Self Care 20/2/06 11:40 Page 27 Supporting people with long term conditions to self care By becoming central to the discussion about their care, people feel more confident, independent and empowered.
In practice
Empowering patients to influence service re-design
South Wiltshire PCT organised a chronic obstructive pulmonary disease(COPD) process mapping event which was attended by 23 people,including patients, clinicians from both primary and secondary care andmanagers.
The aim of the session was to establish the care currently beingprovided to COPD patients by mapping the key aspects of the ‘patientjourney', including: • recognising symptoms • advice and education received following diagnosis • exacerbations/admissions to hospital • living with COPD as a long term condition and self care • follow-up appointments • prognosis.
The session identified the need for more patient information to beavailable in GP surgeries to people when they are first diagnosed.
Subsequently, leaflets were developed by Specialist Respiratory Nursesfrom Salisbury District Hospital and approved by the patient forum.
These are available on the Integrated Clinical Information Database(ICID), and can be downloaded and printed during consultations.
To find out more, contact Louise Fowler, Lead Manager,
West Country NPDT Centre, tel: 01749 836 555,
e-mail: [email protected]
Supporting Self Care 20/2/06 11:40 Page 28 Supporting people with long term conditions to self care In practice
Giving people direct access to help with rheumatoid arthritis
The University of Bristol Academic Rheumatology Unit and the ClinicalRheumatology Service at United Bristol Healthcare Trust have workedtogether to assess the benefits of making multidisciplinary secondarycare expertise available to patients with long term rheumatoid arthritiswhen they need it most. A six-year trial23 compared providing routinehospital outpatient care with situations in which patients or their GPsinitiated reviews with a rheumatologist, physiotherapist oroccupational therapist through a nurse-led telephone helpline.
Fortnightly direct access clinics meant no patient had to wait for longerthan ten working days for an appointment and patients could receiveimmediate advice from the nurse.
Two concerns were that patients would either overwhelm the systemwith frequent requests for review, or that they would be reluctant toaccess the service, not come for review, and suffer avoidable declines intheir health. However, neither problem occurred. After six years,patients who initiated their reviews through direct access wereclinically and psychologically at least as well as patients havingtraditional reviews initiated by a physician. They requested fewerappointments, found direct access more acceptable, and had morethan a third fewer medical appointments.
Tested initially with about 100 patients, this service has now beensuccessfully rolled out to nearly all the 600 patients with long-termrheumatoid arthritis in the department. A committee including severalpatients from the original study managed the roll-out. On their advice,a short education session and information leaflets have beenintroduced for patients entering the scheme.
To find out more, contact Professor John Kirwan, email:
[email protected] or Dr Sarah Hewlett, email:
[email protected]
Hewlett S, Kirwan J, Pollock J, Mitchell K, Hehir M, Blair P, Memel D. and Perry M. Patient initiated outpatientfollow up in rheumatoid arthritis: six year randomised controlled trial. BMJ 2005; 330 (7484): 171.
Supporting Self Care 20/2/06 11:40 Page 29 Supporting people with long term conditions to self care The role of professionals
1. To see self care support as one of the best examples of how partnerships between the public and professionals can work.
2. To support people by promoting self care, helping them feel more in control of their lives through appropriate information, supportingproblem solving and self confidence.
3. To direct people towards the type of support and information they need. Professionals need to be familiar with both primary and secondarycare services in their area, together with voluntary sector, housing,education and other services.
4. To provide meaningful information about specific conditions and guidance on how to access it so that people feel confident enough touse it. Access to effective self care options should be the first item onthe ‘shopping list' that is discussed with patients during a primary careconsultation.
5. To make best use of community pharmacists. Under the new contractual framework for community pharmacies, pharmacists will hold details ofhealth and social care providers or support organisations. They can be avaluable source of information for people suffering from long termconditions for the following reasons: • They are among the most accessible healthcare professionals in the country, with nearly half the population living within 500 metres oftheir local pharmacy.
• They are often the only places where some people can get expert health support, especially in a rural or inner city area where no GP isnearby.
• People can simply walk in; there is no need to make an appointment.
• Advice and support are often available during longer hours.
6. To provide patients with copies of letters written about them by clinicians. The benefits of providing patients with copies of their lettersincludes: • Better informed patients: Patients and carers have a better understanding of their condition and how they can help themselves.
Supporting Self Care 20/2/06 11:40 Page 30 Supporting people with long term conditions to self care • Better compliance: Patients who understand the reasons for taking medication or treatment are more likely to follow advice.
• Health promotion: The letters can be used to reinforce advice on self care and life styles.
The role of PCTs and NHS trusts
1. To make local health and social care information more widely available.
Since 2000, local authority social services, housing departments and PCTshave worked together to produce Better Care, Higher Standardscharters. These charters can be useful sources of information for anyonewanting access to local services.
2. To work closely with local authorities who have excellent information about voluntary organisations, which can be shared across health andsocial care organisations. Local Strategic Partnerships have a crucial roleto play.
3. To have the infrastructure in place to help people make day-to-day choices and manage their condition and own care independently, sothey become true participants in making decisions about their care.
The role of the Department of Health
At a nationwide level, the Department of Health is developing thefollowing as set out in Our health, our care, our say: a new direction forcommunity services: • A pilot involving a local authority and a PCT to develop an integrated approach to information. The ambition is for PCTs and local authoritiesto jointly maintain an accessible database of all services and supportgroups in their local area.
• Services will give all people with long term health and social care needs and their carers an ‘information prescription'. The informationprescription will be given to people using services and their carers byhealth and social care professionals (for example GPs, social workers anddistrict nurses) to signpost people to further information and advice tohelp them take care of their own condition.
Supporting Self Care 20/2/06 11:40 Page 31 Supporting people with long term conditions to self care In addition, the Department of Health is developing the following as partof the implementation of the Better Information, Better Choices, BetterHealth framework: A health ‘find' engine which allows people to search for and find theinformation they need.
An accreditation scheme for information providers to help people easilyfind quality information that they can trust.
The new NHS Direct Interactive TV services also support people with longterm conditions. It is now available to about 20 million people in the UKespecially as a pathway to support self care for "hard to reach" groups (e.g.
elderly living alone) who feature disproportionately highly amongst thosewith long term conditions. NHS Direct is keen to develop these and theonline services further to meet PCTs' requirements and has experience ofworking with organisations such as the Diabetes Care Line and theWakefield Asthma Project.
Everyone has a role
To increase awareness of the importance of self care, patients, parents,carers, teachers and employers all need to get involved in finding the bestway to provide useful information by communicating between themselves.
Important links can be made between Patient and Public InvolvementForums, the Patient Advice and Liaison Service (PALS), local communitygroups and support networks and voluntary organisations. Valuableinformation that has been created by patients and support groups, as wellas strategies to encourage people to get more involved in their own care,can be provided by many community and voluntary organisations.
Supporting Self Care 20/2/06 11:40 Page 32 Supporting people with long term conditions to self care Supporting Self Care 20/2/06 11:40 Page 33 Tools and devices – helping
people to monitor their
condition and control their
medicines
Key actions
• Explore ways of making available more self care tools, self monitoring equipment and assistive technologies – plus information,access and support for their use.
• If you are a pharmacist, ensure you maximise your expertise in the effective and safe use of medicines and the promotion of healthylifestyles, particularly for people with long term conditions.
• Forge close links with voluntary and community organisations and social services networks to understand what services are provided inrespect of tools and devices to support self care and how people canaccess them.
Putting patients at the centre
Regulating their own medicines can be a challenge for some people,especially those who are older and suffer from long term conditions. Theirinability to take medicines correctly can be a major reason why they end upmoving to a nursing home: as many as 23% of older people move into anursing home because they cannot manage their medicines. Many otherpeople with a long term condition are admitted to hospital, often asemergency cases, because they are not taking medicines correctly.
A great deal can be done to help people use their medicines effectively.
Support, information and someone to talk to if they have a problem allhelp them manage their medicines so they can remain safely at home andenjoy the best possible quality of life.
Monitoring people remotely through clinical networks or collaborativeinitiatives can also play a major role in helping people to look afterthemselves at home. For example, elderly or vulnerable people can bemonitored at home by sensors, while people with diabetes have for sometime been able to measure their own blood sugar levels.
Supporting Self Care 20/2/06 11:40 Page 34 Supporting people with long term conditions to self care The voluntary and community sector has an important role in terms ofproviding equipment and tools to help people to self care. Housing andcare services, such as home improvement agencies, will install aids andadapt and repair people's homes to help them live independently in theirown home. The value of these services should not be under-estimated, andclose links with social services can provide great benefits for patients.
In practice
Helping people to maintain a dignified standard of living
For the past nine years, the British Red Cross Community EquipmentServices in Leicester has managed all the community equipmentservices for Leicestershire and Rutland.
Helping over 20,000 people each year, the small call centre handles upto 7,500 calls a month. It delivers almost all the equipment – 70% ofwhich is recycled stock – within seven working days.
To find out more, contact the British Red Cross Society, tel: 0116 254 4547.
When people know how certain medicines might affect their daily lives, they can share in the decision-making process of how and when to take them.
In practice
Supporting self care on the high street
In a DH sponsored pilot across Greater Manchester, up to 6,000 peoplewith diabetes and/or cardiovascular disease are being offered the choiceof having their next consultation carried out in an approved pharmacy.
The choice is offered as part of GP-delegated care and the visit to thepharmacy to collect medicines will now include point of care blood testsfor HbA1C(marker of diabetes control) and cholesterol/HDL-cholesterol(markers of lipid lowering therapy, lifestyle and diet). The pilot supportsthe integration of pharmacy into healthcare delivery under the newPharmacy Contract and enhances patient choice, convenience and accessto healthcare outside hospitals. The service will start to be offered by 22pharmacies late 2005 onwards, running for 18 months in each and withfunding for a minimum of two consultations per year.
To find out more, contact Gilbert Wieringa, Greater Manchester SHA,
tel: 07980 958092 Supporting Self Care 20/2/06 11:40 Page 35 Supporting people with long term conditions to self care Reminders by e-mail, text message or phone have also proved successful in pilots, although many people from hard-to-reach groups will not have access to these The role of professionals
1. To be aware of the tools and devices – both technological and non- technological – that can make a significant impact on a person's abilityto live independently with a long term condition. People need to beable to gain access to information relating to these technologies as andwhen they want, so front-line staff should be able to offer appropriateguidance.
2. Self care support is included within the essential services component of the new contractual framework for pharmacy, which all pharmacies willnormally be expected to provide. Within this service description,pharmacies will provide several different aspects of self care supportsuch as advice on the treatment of minor ailments and long termconditions; and advice on the selection and use of appropriatemedicines. Other essential services include: • sign posting to other health and social care providers when • for people with diabetes or heart disease, providing prescription- linked healthy lifestyle advice on stopping smoking, nutrition orphysical activity • online prescription ordering • repeat dispensing – an essential service for patients to have their medicines dispensed in several episodes rather than going back totheir GP for a new prescription each time; at each dispensingepisode, the pharmacist will discuss the patient's medicine and giveappropriate advice to them. • reviewing medicine use, as and when appropriate 24 For reviews of medicine use, see Management of Medicines: A resource to support implementation of thewider aspects of medicines management for the NSFs for diabetes, renal services and long term conditions.
Supporting Self Care 20/2/06 11:40 Page 36 Supporting people with long term conditions to self care Evidence suggests that using computers and telecommunications systems to monitor conditions may improve care processes and be associated with improved clinical outcomes, especially for people with diabetes.
(Transforming Chronic Care, HSMC Birmingham, 2005) In practice
Improving understanding and self care for people with diabetes
People with diabetes in Hillingdon can now get support through theHillingdon community pharmacy diabetes service. This is a personalisedprogramme of health monitoring (blood glucose, blood pressure,cholesterol), health education and medicines management offered atten community pharmacies in the area.
A questionnaire forms the basis for an initial discussion about lifestyleand medicines with the pharmacist. Follow-up appointments, whichgive an opportunity for further discussion on issues such as weightmanagement and giving up smoking, occur as often as the person withdiabetes and the pharmacist think appropriate.
Results from the scheme show not only indications of improved healthbut also that participants achieve a greater understanding aboutdiabetes. This enables them to become more confident about selfmonitoring their condition and self administering their medication.
Contact: Shailen Rao, Hillingdon PCT, e-mail:
[email protected]
Supporting Self Care 20/2/06 11:40 Page 37 Supporting people with long term conditions to self care The role of PCTs
1. To use the guidance on the Preventative Technologies Grant, issued by the Department of Health in June 2005, accompanied byimplementation support material and best practice guidance developedby the Care Services Improvement Partnership (CSIP). This will help localauthorities and their health partners to facilitate the change required tobring telecare into the mainstream of service provision.
2. To look at what services, tools and devices are already in use in your 3. To find out from patients what has been or would be useful to them.
In practice
Radio Pager Service
The Oliver Zangwill Centre for neuropsychological rehabilitation, partof East Cambridgeshire and Fenland PCT, has developed an award-winning ‘text-to-voice' technology which will run alongside theirexisting NeuroPage service and offer clients with visual impairmentsthe opportunity to receive memory and attentional alerts.
The NeuroPage service (a radio-pager worn by the individual to receivewritten text messages) is already used by a number of clients across theUK. Message alerts are delivered to help with problems such asforgetting or initiation. A computer, based at the Centre, automaticallysends alerts at pre-arranged times. However, this system may not beaccessible to people with acquired visual impairments or readingdifficulties. For this reason the ‘text-to-voice' system was developed.
Andrew Bateman said, "We felt that these people could benefit fromrecent advances in technology. Integrated circuit technology is readilyavailable to convert written text to digitally produced spoken output." For further information, contact Andrew Bateman, Neurological Services
Manager, tel: 01353 652165, e-mail: [email protected],
www.neuropage.nhs.uk
Supporting Self Care 20/2/06 11:40 Page 38 Supporting people with long term conditions to self care Supporting Self Care 20/2/06 11:40 Page 39 Support networks – boosting
confidence and getting
involved in the community
Key actions
• Find out what voluntary and community support groups are running in your locality. Make a point of engaging with social care and localauthorities, who have a wealth of information and knowledge.
• Establish ways to ensure that primary and secondary care professionals are able to access and share this information.
• Encourage and forge partnerships between patients and practitioners when establishing formal and informal support networks.
• Encourage people to be part of relevant local networks which in turn will support them as well.
Putting patients at the centre
When it comes to helping people to take greater responsibility for theirown care, a balance between minimising risk and helping them to becomemore independent must always be found.25 A paternalistic and overly cautious approach can stop people from taking control of their own lives and care.
All health and social care workers need to focus on boosting people's confidence rather than encouraging their dependency.
Community and voluntary groups play an important role in boosting people'sconfidence and getting them involved in their community. Many localcommunity groups focus on specialist areas such as sickle cell, Parkinson'sdisease, care for the elderly, HIV/AIDS, improving physical access, learningdisabilities, mental health and testicular cancer. Independence, Wellbeing and Choice: Our vision for the future of social care for adults in England, DH, March2005 Supporting Self Care 20/2/06 11:40 Page 40 Supporting people with long term conditions to self care Many are formed to: • support people living with specific conditions • provide specific and detailed advice and information • arrange respite care and support for carers and relatives • provide disease-specific education and training • allow peer support with people in similar circumstances • provide advocacy support • lobby for service change and improvements.
Support groups and networks may be particularly useful to people fromethnic minority communities, where language and culture can be a realbarrier to long-term self care and fostering a sense of social inclusion.
In practice
Social Action for Health creates 71 health guides in East London
"Such a simple idea – why has it never been done before?" A small advert in a local paper attracted 600 enquiries from peoplewanting to train as health guides. Eventually 75 applicants took part inthe eight-week training, with 71 completing the course.
The aims of the initiative were: • To establish and support local people to act as health guides in their community.
• To enable people from ethnic minorities to access health information and guidance, plus increase understanding andawareness of self care, in their own language.
• To empower local people to access their own community-based Over five months, 2,000 local people took part in health guide sessionsin Bengali, Somali or Turkish.
To find out more, contact Elizabeth Bayliss, Social Action for Health,
The Brady Centre, 192 Hanbury Street, London, E1 5HU,
e-mail: [email protected]
Supporting Self Care 20/2/06 11:40 Page 41 Supporting people with long term conditions to self care The role of professionals
1. To ensure that patients contribute as much as possible to their own needs assessment and care planning. The starting point for this is aperson's view of his or her abilities, needs and ambitions. Person-centredcare planning is one of the most important ways in which health andsocial care can be transformed into integrated services with theindividual or their carer at the centre of the package of care.26 2. To work closely with the individual, their carers and other professionals across health and social care services. This will provide huge benefitswhen it comes to supporting and improving the quality of life of thepatient, making improvements to the design and delivery of services,and patient satisfaction.
3. To know and understand what support is provided outside the health and social care arena. Being able to point someone in the direction of aspecific support group could make the difference between someoneliving independently with a condition, or just living with it.
4. To encourage people to join local networks to receive and give support as necessary.
In practice
Improving the quality of care for older people in hospital
The multidisciplinary Southampton Older People's Outreach andSupport Team is made up of an occupational therapist, a social worker,a consultant nurse, two senior nurses, a physiotherapist, a consultantgeriatrician and an administrator. Aiming to improve the quality ofcare older people receive in hospital, the team is looking at reducingcomplication rates, shortening lengths of stay, improving dischargeplanning and ensuring that people are more independent when theyleave hospital.
Nadia Chambers, who co-ordinates the team, says: "As soon as areferral is received from either A&E, Medicine or Surgery, the teamcarries out a range of assessments. This includes discharge planningand flagging up social care needs." To find out more, contact Nadia Chambers,
e-mail: [email protected]
Good care planning for people with long term conditions, Modernisation Agency, June 2005 Supporting Self Care 20/2/06 11:40 Page 42 Supporting people with long term conditions to self care In practice
Supporting stroke patients to live independently
Carers, and stroke patients belong to the Stroke Rehabilitation UserGroup, where they were supported by health and social careprofessionals to discuss questions and suggest improvements that couldbe made to stroke services in Bradford. They meet at St Luke'sHospital, Bradford. Denise Beck, the user group co-ordinator, says: "The user group hasworked far better than we ever imagined. Their feedback has beenvery, very useful.
Rehabilitation of stroke patients is very important. It's been shown thatif you go into a rehabilitation unit you are less likely to die fromanother stroke and 30% more likely to return home and be moreindependent." Nick Farrar says: "the group has developed tremendously in confidenceover the last year and are themselves now running annual Bradford-wide stroke events to ensure services keep improving. The staff havelearnt a huge amount about the real patient experience" To find out more, contact Nick Farrar, tel: 01274 437 996,
e-mail: [email protected]
In practice
Newham COPD pathway development project
Newham Health Care and Newham PCT have jointly funded a projectdirector to manage long term conditions. In addition, they are workingtogether to implement the COPD pathway development project atNewham University Hospital. Here, expert patients, the local ‘breatheasy' group and physicians, nurses and physiotherapists are workingtogether to develop a seamless COPD pathway across primary andsecondary care.
To find out more, contact Project Director, LTC Newham, tel: 020 8555
4832, e-mail: [email protected]
Supporting Self Care 20/2/06 11:40 Page 43 Supporting people with long term conditions to self care The role of PCTs and NHS Trusts
1. To link up with social care organisations and explore what voluntary and community sector resources and expertise are available.
2. To understand the available level of advice and the degree to which local groups can support self care. The most important aspect of this isto ensure that information can be easily shared throughout your area sothat those who need it most can benefit.
In practice
Working to rebuild a sense of independence
The HomeBridge 'bridge to home' project has been launched inAshford to provide recuperative care and rehabilitation for adults andolder people. Seven purpose-built bungalows adjacent to a shelteredhousing complex act as a half way house between hospital and home,residential care and living independently, or for people experiencingdifficulty in their own homes. Service users can stay for up to six weeks,during which time they receive intensive support and recuperative careto promote independence, rebuild skills and confidence to help themreturn to their own home. The project involves joint working between SSD - care managementand support workers, housing - the scheme manager, and PCT - nurses,occupational therapists, physiotherapists and rehabilitation workers.
The service also works with the Age Concern Day Centre adjacent. In2005 46 clients accessed the service of which 38 returned to their ownhomes or were re-housed to sheltered housing, a high proportion ofwhom would in the past have gone into residential care. To find out more, contact: [email protected],
[email protected], or [email protected],
tel: 08453 302967
Supporting Self Care 20/2/06 11:40 Page 44 Supporting people with long term conditions to self care Supporting Self Care 20/2/06 11:40 Page 45 Want to know more about
self care?
This publication is the latest in a series from the Department of Healthsetting out the strategy for a patient-centred health care service.
The NHS Plan (July 2000) and Securing Our Future Health: Taking a LongTerm View, Final Report, Derek Wanless (April 2002). We are nowhalfway through a ten-year programme of reform which began with theNHS Plan and the Wanless Report. These identified the need for aprogramme of sustained investment in and reform of the NHS to ensurethat it could deliver its core aim: providing high-quality care for everypatient, responding to need, not ability to pay.
Better information, better choices, better health (December 2004). Thestrategy is a framework to develop resources nationally and locally thatmeet everyone's need for information so they can make informedchoices about taking better care of their own health and treatmentoptions. It will make consistent, quality information available in moreplaces and in more ways than ever before, for example in people'shomes through interactive TV and the telephone, in the community andin health settings through face-to-face contacts and by using languagepeople understand.
Self Care – A Real Choice, Self Care Support – A Practical Option (January2005) contains more information about self care support.
www.dh.gov.uk/selfcare.
Supporting People with Long Term Conditions (January 2005) outlined anew NHS and social care model for the care of people with long termconditions. It aims to match need to support by providing personalised,yet systematic health and social care to people with long termconditions. It spells out a more proactive approach to identifying andresponding to needs as they emerge. Supporting Self Care 20/2/06 16:14 Page 46 Supporting people with long term conditions to self care Independence, Wellbeing and Choice: Our vision for the future of socialcare for adults in England (March 2005) signalled a move towardsproviding a more proactive, seamless and person-centred care.
The National Service Framework for Long Term (Neurological) Conditions(March 2005) aims to transform the way health and social care servicessupport people to live with long term neurological conditions. Keythemes are independent living, care planned around the needs andchoices of the individual, easier and timely access to services and jointworking across all agencies and disciplines involved. The principles of theNSF are also relevant to service development for other long termconditions.
Creating a Patient-led NHS (March 2005) signalled a radical change in theway the NHS works. It looks at changing the culture as well as systems sothat they are truly patient-led with a focus on health promotion andprevention.
Commissioning a Patient-led NHS (July 2005) and Health reform inEngland: Update and next steps (December 2005) brings together manypolicies which together create a framework for change. The changes arenecessary to ensure that the NHS provides high quality care, led by theneeds and wishes of patients, in the most efficient way. Many of theinitiatives are well known: patient choice, a wide variety of providers,more freedom for hospitals, stronger commissioning, new paymentmechanisms and independent inspection of quality.
For examples of Self Care Devices and Assistive Technologies to SupportSelf Care (July 2005), visit www.dh.gov.uk/selfcare Our health, our care, our say: a new direction for community services(January 2006) sets out a vision and package of proposals designed toaddress the expectations and outcomes that people want for themselves;maintaining a sense of well-being; and leading an independent life.
There is solid evidence that care is less effective if people feel they arenot in control. This self care guide for supporting people with long termconditions complements the proposals set out in the White Paper andboth reinforce our existing programme of reform.
Supporting Self Care 20/2/06 11:40 Page 47 Supporting people with long term conditions to self care To read case studies about self care support initiatives that are beingimplemented locally across the country, visit: www.dh.gov.uk/SelfCare.
www.dipex.org – DIPEx shows you a wide variety of personal experiencesof health and illness. You can watch, listen to or read their interviews,and find reliable information on treatment choices and where to findsupport. The site covers cancers, heart disease, mental health,neurological conditions and screening programmes, and there are plansfor new areas on pregnancy, teenage health, long term conditions andmany others.
The Working in Partnership Programme(www.workloadmanagement.nhs.uk or e-mail: [email protected]) is running showcase pilots to help PCTsand care professionals to work closely together to support self care.
Airedale and Bradford, Central Cheshire, Southwark, Lambeth, Oldhamand South Tyneside PCTs are involved in the pilot.
Through the collaborative with the National Primary Care DevelopmentTeam, Cheshire West PCT has involved Patient Advisors and their carers indeveloping patient information leaflets which include personalmanagement planning and information about recent test results. E-mail:[email protected] Kent Telehealth gives people the technology to monitor their ownhealth. People can communicate with health and social careprofessionals from home via a hi-tech computer. The scheme also allowspeople to measure, record or take blood pressure, blood sugar, bloodoxygen, temperature, weight, lung capacity and ECGs. E-mail:[email protected] Supporting Self Care 20/2/06 11:40 Page 48 Supporting people with long term conditions to self care Supporting Self Care 20/2/06 11:40 Page 49 Allied Health Professional National Service Frameworks Expert Patients Programme Public Service Agreement Patient Advice and Liaison Service National Primary Care Development Team Supporting Self Care 20/2/06 11:40 Page 50 Supporting people with long term conditions to self care Supporting Self Care 20/2/06 11:40 Page ibciii Supporting Self Care 20/2/06 11:40 Page obciv Crown Copyright 2006 Produced by COI for Department of Health270415 1p 3k Feb06 (CWP) If you require further copies of this title quote 270415/Supporting people with long term conditions to self care and contact: DH Publications Orderline
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