Teenagers and young adults with long-term conditions have specific emotional and social needs. How can health services bettersupport these patients to deal with the responsibility of their condition and keep themselves in good health?
The first ever report into mortality from the National Diabetes Audit was published in December 2011. It revealed that women between the ages of 15 and 34 with diabetes are nine times more likely to die than other women of the same age, while men in this age group are four times more likely to die if they have the condition.
These figures are shocking, but perhaps not altogether surprising to those who are aware of the particular challenges faced by young people with long-term conditions.
There is growing recognition that teenagers and young adults with long-term conditions have specific emotional and social needs. Many will be entering relationships or starting work. They may be leaving home for the first time, or moving away to university. For many it is a difficult time as they experience greater independence.
Having a long-term condition is tough for teenagers and young adults. They have to cope with the demands of their treatment regime on top of the everyday challenges this age group faces. Sometimes the pressure of this responsibility can lead them to stop taking their medication or stop attending clinic appointments, simply in a bid to feel more ‘normal’. This can have devastating consequences, as the diabetes report highlights.
Additionally, patients who transfer find adult services very different from paediatric care. They are expected to take much greater responsibility and to actively participate in the management of their condition.
Supporting young adults
In recognition of these particular challenges and the significant impact they have on patient outcomes, NHS Kidney Care, the service improvement organisation for kidney care, is managing a project to support young adults with kidney disease. The initiative supports five local project groups to develop innovative approaches to ensure young people with kidney disease have the practical and emotional support they require. The aim is to identify a range of proven approaches, adaptable to different locations, which will deliver:
· Greater concordance with treatment.
· Fewer lost transplants and patients returning to dialysis.
· Better clinical and psychological outcomes for patients.
· More efficient use of resources.
NHS Kidney Care invited kidney networks throughout England to submit proposals for exploring and developing new approaches for young adults. The five selected project groups are situated in the North East, South West, Nottingham/Derby, Reading/Oxford, and London. The 18-month long project focuses around the recruitment of a key worker to develop tailored approaches. Outcomes from the project will be rolled out across the country, and used to inform the provision of care for young adults with other long-term conditions.
While these NHS Kidney Care projects are based in secondary care, their approaches and experiences are equally applicable across all services, including primary practice.
You’re Welcomequality criteria
In one of the projects, the renal team at the Royal Berkshire NHS Foundation Trust is using the Department of Health’s Your Welcome quality criteria as the basis for developing services tailored to the needs of young adults.
You’re Welcomesets out principles to help commissioners and service providers improve the suitability of health services for young people. It covers themes which include: ensuring services are accessible for young people; raising awareness of services; addressing issues of confidentiality, consent and safeguarding; developing an appropriate environment and atmosphere; and involving young people in developing, monitoring and evaluating services.
The Royal Berkshire team worked through each of the You’re Welcome criteria in detail and compared them to existing services to see what more could be done.
One of the most significant new initiatives has been the setting up of a young adult clinic. You’re Welcome criteria recommend that clinics are held at sites that are easy for young adults to access by public transport, are not in clinical settings and are at locations that young adults feel comfortable in. The first young adult clinic was held at a leisure centre in Reading town centre one morning. The format was very relaxed with a drop-in clinic, time for use of the gym facilities and the chance for patients to go for lunch together afterwards if they wished.
Feedback on the clinic has been very positive although it was initially a logistical challenge to set up. As patient notes could not be taken off site, secure wireless access was needed for the clinic staff to access notes in the leisure centre. Blood tests could not be taken at the off-site clinic, so patients had to have these taken in advance, either at the kidney unit or via their GP. Additionally, a series of detailed assessments were required to ensure that essential standards could be maintained (such as handwashing protocols) and necessary contingency plans were in place.
Social events are being planned to provide a chance for young adults to come together for peer support. A Facebook group has also been set up to help patients to network with each other if they wish. A directory of services for young people is being developed containing information on lifestyle, useful contacts in the hospital and wider NHS, and links to other useful services covering health promotion and education, sexual health, smoking cessation, drugs, benefits, mental health, etc.
The team is also developing a teaching guide and establishing training for all staff in the kidney unit, based on the You’re Welcome criteria, to improve their understanding of the issues that young adults face and to offer skills and techniques for approaching them.
More information and a ‘how-to guide’ on the Royal Berkshire’s work to support young adults is available on the NHS Kidney Care website (see ‘more information’ below).
NHS Kidney Care has also launched a new film, Reaching out: Meeting the needs of young adult patients highlighting the benefits of young adult clinics for patients with long-term conditions. The film encourages healthcare teams to set up specialist clinics, and highlights the benefits of tailored support. A link to the film is also below.
Supporting young adults in primary care
There are a number of things nurses in practice can consider to improve services for young adults:
· Don’t try to reinvent the wheel: see what existing resources and experiences you can learn from, such as You’re Welcome.
· Dedicated youth support: can you provide access to a youth support worker who understands the needs of young adults? Could you work with colleagues in other specialisms or practices to jointly recruit or commission specific support for young adults?
· Peer support: often some of the most valuable support for young adults can be from their peers. How can you help young adult patients to meet and support each other?
· Tailored clinics: the value of out-of-hospital clinics is obvious for secondary care services, but this approach could also work well for primary care clinics.
· Training and education: can you help raise awareness and improve understanding of the issues young adults face among your colleagues and offer them skills and techniques for approaching them?
Health services for people with long-term conditions need to look at how they can offer specific support for teenagers and young adults. This could be through setting up tailored young adult clinics, offering peer support, or using social media to engage with patients. It is vital to recognise that this group has very specialist needs and, although they may only make up a small proportion of the total number of patients being treated, they are often the ones at greatest risk.
The Department of Health’s You’re Welcome quality criteria
More information on NHS Kidney Care’s Supporting Young Adults with Kidney Disease projects
Case study and ‘how to guide’ on the Royal Berkshire NHS Foundation Trust’s work to support young adults
Reaching out: Meeting the needs of young adult patients– a short film from NHS Kidney Care
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