A programme of work by the Leeds Community Healthcare nursing teams to give self-care support to people who are living with long-term conditions
Lynne White, PGCert, BSc, RGN,is community matron and clinical lead for long-term conditions; Angela Clegg, MSc, RGN, is head of practice and professional development; both at NHS Leeds Community Healthcare, the provider division of NHS Leeds.
White, L., Clegg, A. Encouraging and supporting patients living with long-term conditions to self-care. Nursing Times; 105: 31, early online publication.
This article outlines a holistic approach to supporting patients with long-term conditions to self-care. This approach promotes the self-care ethos to nursing staff, encourages patient involvement and improves overall health and well-being.
It also incorporates using the booklet Your Health, Your Way – A Guide To Long-Term Conditions and Self-Care (Department of Health, 2009a). Both authors were involved in developing this resource.
Keywords: Long-term conditions, Resource pack, Self-care
- This article has been double-blind peer reviewed
- Self-care is most effective when both health and social needs are considered.
- Having multidisciplinary teams of health and social care professionals working together reduces duplication of work.
- Many patients will need support to start on a self-care pathway and continuous encouragement.
- Practitioners should use national resources along with local service information.
With over 15 million people in England living with a long-term condition (Department of Health, 2008a), there is a real need to address how patients can help to look after themselves and take joint responsibility for their health care in partnership with healthcare professionals.
Atthe time of the 2001 census (Office for National Statistics, 2001), there were over 128,000 people in Leeds who considered themselves to have a long-term condition, equating to 18% of the total resident population. Of these, 57,732 were of working age and the majority lived in the most deprived areas.
In addition, there were also 70,446 carers providing unpaid care. This meant caring for people with a long-term condition was a key priority.
To address this, the Leeds Community Healthcare team developed a programme to integrate and promote self-care among its community healthcare professionals, driven by the long-term conditions nursing team and the community matron team. These form part of the Leeds Community Healthcare team. Working together as one team, they recognised the need to take an active role in encouraging, supporting and facilitating patients to self-care.
Patients need support to manage their condition for the rest of their lives. By empowering them to do so, the benefits will far exceed the time and resources that teams put into promoting supported self-care.
Embedding the ethos of supporting self-care
The community matron and long-term conditions teams in Leeds have embraced the concept of self-care as part of patients’ everyday care. Together, they believe that enabling patients to self-care is an essential component of the nursing and matron role.
Professionals must actively promote independence to help patients take control and to ensure they play a crucial part in the decisions made about their care. For the last four years, staff have been striving to ensure that this is integral to the work of all clinicians, working particularly closely with a number of interested GPs.
Partnership working to benefit patients has been one of the ways in which the Leeds team has been particularly successful. As well as working closely with other healthcare professionals, the community matron and long-term conditions teams work to ensure that self-care is integrated with social services.
All teams are conscious of prioritising patient needs and ensuring that patients receive information in an easy-to-use format, helping them make informed choices about their own health and social care.
Staff are mindful that they should not only concentrate on the health aspects of care delivery but also ensure they take a holistic approach, assessing patients’ health and social well-being, which often impact on each other.
The publication of the healthcare professional booklet Your Health, Your Way – A Guide to Long-Term Conditions and Self-Care (DH, 2009a) has helped to focus the thinking of frontline nursing teams and ensure that nurses are tackling self-care issues with patients.
There is also an online resource pack, which brings together details of DH publications, national charities and other relevant organisations (DH, 2009b).
As the Leeds teams work closely with social care staff, it is important that nurses have information about local social service provision.
Therefore, as well as national resources, the teams use a Leeds City Council A-Z booklet, which outlines local services for older and disabled people, including neighbourhood networks, benefits advice and contact details for support groups. Having local, up-to-date information enables nurses to help patients access all the relevant services from both a health and social care perspective.
The Your Health, Your Way booklet has also been useful for sharing information and ensuring that staff personal development is up to date.
NHS Leeds Community Healthcare brings frontline staff and senior management together regularly, through organisation-wide forums for all groups of nurses, allied health professionals, medical and dental staff.
The booklet has been presented at the nursing forum and has also been tabled as an agenda item for the professional engagement forum chaired by Philomena Corrigan, the managing director of NHS Leeds Community Healthcare.
It has formed the basis of more focused learning about information prescriptions (DH, 2008a), the Map of Medicine web-based tool,forthcoming e-learning tools and NHS Choices.
All these resources have also been useful for recently appointed trainee matrons, who are finding them invaluable in supporting self-care and helping them explain its benefits to patients.
A holistic approach to assessment
As part of the Leeds Community Healthcare partnership with local social services, a holistic assessment takes place at the first meeting with each patient. This comprehensive assessment looks at both health and social care needs.
Health and social care professionals from both NHS Leeds and the local authority use the single assessment process. This same template ensures that all staff work consistently and that there is minimal duplication of work between multidisciplinary health and social care teams.
Patients’ home environments are also assessed, which may lead to them being referred to other services or professionals, such as occupational therapists, if a more detailed or specialist assessment is needed.
The general assessment helps nurses to decide the longer-term care planning needed to help patients. For those with impaired mobility, this might include help to enable them to use bathroom facilities more independently, such as walk-in showers, or referral for walking aids.
In some instances, people are able to walk very short distances around the house but cannot manage when outside. It may then be appropriate for them to have a wheelchair to enable family members to take them out and enable them to participate in organised outings from neighbourhood network groups.
These measures help people to remain independent for longer and reduce social isolation, which is a well-recognised cause of depression and anxiety.
The care plan may also cover referral to support groups or confidence-building courses such as the Expert Patient Programme (see www.expertpatients.co.uk).
Support that can be delivered includes referral to social services or referring patients to other services.
This could include a referral to a local falls programme, run by dedicated staff, for those who are most vulnerable. The falls programme offers a structured exercise programme, which is individually tailored, along with advice on falls prevention.
As well as informing patients of the dangers inside and outside the home, this programme boosts confidence, allows patients to develop better mobility and balance and enables them to manage their own situation more effectively and safely.
Leedsdietitians also run a local nutrition service which the team uses. Food First is an educational resource for clinicians. It offers advice on nutrition for people with long-term illness, who have been assessed as being poorly nourished with weight loss, which is common in this group.
The service also offers practical advice to tackle the issue on a long-term basis, with the team working with dietitians to advise patients on how to maintain weight, or gain weight by adding nutritional extra calories to their diet. This has proved to be more valuable than prescribing short-term supplements. These supplements do not have a long-term effect and often patients do not take them, which results in failure to improve nutrition and unnecessary expense for the PCT.
This new system has the positive effect of patients having a more enjoyable and naturally enhanced diet, while the PCT makes a cost saving that can be invested elsewhere.
For people with COPD, a local pulmonary rehabilitation class forms part of the PCT’s respiratory community service, giving information and support about living with the condition.
The class incorporates a structured and individual exercise programme and is run concurrently with advice sessions, which explain the condition and tell patients how to manage it better.
When appropriate, self-management plans are agreed with patients. In those cases where they carry their own emergency antibiotics and steroids, this enables them to start treatment early, rather than waiting for a crisis. The team will be evaluating the effect of this on hospital admissions.
Challenges of supporting self-care
As self-care support has become an integral way of working with patients, the Leeds Community Healthcare team does not use a particular self-care pathway, but looks at various ways in which to engage and encourage patients.
The team finds that patient enthusiasm for self-care varies. Older people can find it more difficult to embrace, as culturally they are used to health care being delivered in a top-down way, without questioning provision. This can mean it takes time for them to accept that they could be in control of their health care.
The team has found that living with a long-term condition can result in patient anxiety and depression, and so realised that psychological needs had to be addressed before patients would feel motivated to take a more active role in decisions about their health and care.
Patients often feel vulnerable when nurses first start to see them but, as relationships build over time, nurses find it easier to encourage them to take a lead in their care. This may not happen instantly; education and reassurance is therefore an ongoing process, reinforcing the benefits. However, most patients who have started on the self-care path and see the benefits want to do more.
Many with COPD will have previously been admitted to hospital with exacerbations.
When a patient with COPD has left an exacerbation until crisis point, a doctor is called, and the patient becomes anxious and frightened, which leads to more breathlessness and an ambulance being needed.
Once the crisis is over and the patient is back at home, the community nursing team visits and encourages them to report their symptoms earlier. The patient sees the benefit of earlier treatment and therefore earlier recovery, which often prompts them to take action much sooner when they experience symptoms.
The team then finds that patients are much keener to follow a self-care pathway, and to understand their medication and learn about early symptoms to look out for and when to start treatments.
Patients are encouraged to telephone at any time, to build their confidence in self-management. Over time they generally need less support as their confidence increases.
Some people need more of a guiding hand than others and this often depends on where they are on their healthcare journey. It can be more difficult to educate people with well-established illness who have lived with this for many years than someone closer to their initial diagnosis. This highlights the need to start empowering patients as soon after diagnosis as possible.
Nurses can be at the forefront of building relationships with patients that will benefit every subsequent interaction with healthcare professionals.
When it comes to supporting self-care and care planning, the Leeds Community Healthcare team strives to treat everyone as an individual, learning how individual patients prefer to be approached, understanding how they respond to information and how to take it forward with them. They understand there is no such thing as one size fits all.
Continuous learning and evaluation
The team has successfully integrated self-care into its patient care philosophy, but is continuously striving for improvement.
All health and social care professionals in Leeds use the single assessment process to record patients’ general health, care requirements and any social needs such as providing home carers.
Leeds Community Healthcare is developing a universal template for healthcare professionals to capture condition-specific information as part of the assessment process. This assessment will record patients’ specialist requirements, including disease-specific medication and attendance at rehabilitation courses.
Sharing patient information between healthcare professionals on one form will help staff avoid duplication and save time, and patients will not have to repeat their medical history when seeing a different member of staff.
The Leeds Community Healthcare team is planning to develop a universal self-care framework to help all healthcare professionals across the PCT provide quality care and to encourage and support patients to self-care.
Nurses and community matrons at NHS Leeds have embraced the benefits of supporting self-care and care planning. With the involvement of local social services, it is a holistic approach, looking at patients’ wider needs.
In 2007, as part of a review of the community matron service, patients were asked how the service had impacted on their care. Patients said that community matrons had ‘improved [their] quality of life’, ‘helped [them to] cope with [their] disabilities’ and ‘take time to explain things’.
While this is only anecdotal evidence, the Leeds team will be working closely with health and social care partners to evaluate the wider long-term benefits, both to patients and the local service.
- There are 15.4 million people in England living with a long-term condition (Department of Health, 2008b).
- Because the population is ageing, this number is set to rise by 23% over the next 25 years (DH, 2008c).
- IpsosMORI research has shown that only half (53%) of survey respondents took an active role in managing their long-term condition ‘all of the time’. Just over half (56%) also said they felt ‘very comfortable’ in taking responsibility for this care (Ipsos MORI, 2009).
- The five pillars of self-care are: information; skills and knowledge training; tools and self-monitoring devices; healthy lifestyle choices; and support networks (DH, 2009a).
- Lord Darzi’s report committed the NHS to offering, by 2010, a personalised care plan for those with a long-term condition (DH, 2008d).
- With this in mind, Leeds Community Healthcare decided to embrace the self-care ethos and actively promote it to patients, to encourage them to become more involved in their healthcare decisions.
An online resource pack, including a directory of national support and information services and a selection of PCT self-care guides
Department of Health (2009a) Your Health, Your Way - A Guide to Long-Term Conditions and Self-Care. London: DH.
Department of Health (2009b) Directory of National Support and Information Services. London: DH.
Department of Health(2008a) Information Prescriptions. On-line Resource. London: DH.
Department of Health (2008b) Raising the Profile of Long-Term Conditions Care: a Compendium of Information. London: DH.
Department of Health (2008c) Ten Things You Need to Know About Long-Term Conditions. London: DH.
Department of Health (2008d) High Quality Care for All: NHS Next Stage Review Final Report. London: DH.
Ipsos MORI (2009) Long-Term Health Conditions 2009: Research Study Conducted for the Department of Health. London: Ipsos MORI.
Office for National Statistics (2001) Census 2001. London: ONS.