关节炎的年轻人

Healthcare is mainly divided into children’s services (paediatrics) and adult services. In some places around the country there are adolescent centres which people attend in between children’s services and adult services.

如果您第一次去医院时年龄在16-18岁时，您可能会直接进入成人服务，但是如果您在此之前被诊断出去，那么您可能需要从小儿风湿病学到成人风湿病学。

这既令人兴奋又引起一些担忧，但是在成人环境中看到是您独立增加的积极迹象。

The process where you move from one rheumatology service into one aimed at people of an older age is called ‘transition’. Paediatric services are different to adult services but knowing what to expect will help you make the transfer.

Most adult rheumatologists will look after patients who have had arthritis since they were children or teenagers, but this won’t be the majority of their work. You will have the chance to talk to your new rheumatology team about your arthritis and how it’s affected you in the past.

在这两种情况下，将有一个专业人士团队共同努力提供您的护理 - 多学科团队（MDT） - 他们与您的GP分享您的护理。

您可能会注意到两项服务之间的一些差异在此表中：

过渡期间会发生什么？

过渡过程在全国各地的不同地方有所不同，但它始终围绕着适合您的事物。如果您的团队尚未提及，请问他们如何在服务中运作过渡以及如何为您服务。

您应该进行过渡计划，并希望能与您的新团队结识，并知道成人诊所在哪里。

您还应该与您的父母，照顾者或朋友一起练习并感到舒服。当您参加成人服务时，您仍然可以选择与您进行咨询的人。

除非您所在地区有特定的年轻人诊所，否则成人诊所可能会有很多老年人，而您年龄的其他人则不多。

在对成人风湿病部门的最初几次访问中，如果大多数人比您大，您可能会感到不合时宜。请记住，各个年龄段的人都需要参观医疗服务，而关节炎对他人的影响可能与您的影响完全不同。

In England, many people have to pay prescription costs for drugs.

As a young person with arthritis, it's important to check whether you are in one of the groups of people entitled to free medication.

You don't have to pay prescription costs in England if you're:

• under 16
• 16、17或18以及学校，大学或大学的全日制教育
• 怀孕或在过去的12个月内生了一个婴儿
• 获得某些福利或您的家人正在获得某些税收抵免。

具有某些健康状况的人有权获得免费药物治疗。但是，贾不是这些条件之一。

NHS低收入计划

If you're aged 16 or over and on a low income, you may be entitled to help through the NHS Low Income Scheme.

19岁及以上的学生无权自动获得免费处方。但是，许多人确实通过NHS低收入计划有资格。

该计划基于您的收入，而不是父母的收入 - 除非您与他们同住。您可以从Jobcentre Plus或访问中获取HC1表格NHS帮助健康费用。

NHS处方预付证书（PPC）

If you do have to pay for your prescribed medication, it could work out cheaper to get a prescription prepayment certificate (PPC).

这些涵盖了所有NHS处方，因此无论您需要多少，也可以为NHS牙齿处方付费。

您可以获得持续时间或三个月或12个月的PPC。

NHS Choiceshas detailed information about who can claim free prescribed medication, and how to apply. It also has information about PPCs.

在苏格兰，北爱尔兰和威尔士，处方药是免费的。

如果您每天至少进行一项活动，可以给您一种享受感和至少一项活动，从而为您带来成就感。这些活动不一定是大型或耗时的。

It’s important you talk to someone you can trust if you’re feeling worried. This can help you make sense of how you’re feeling and often leads to finding solutions or ways forward. Keeping your concerns to yourself may lead you to feel overwhelmed.

如果您或您的家人担心自己的心情较低，请尽快访问GP或与您的医疗团队交谈，尽快获得帮助。

尝试记住您并不孤单，有很多人想帮助您。

Psychological services

一些儿科和青少年风湿病部门有心理服务。这些服务的一些问题可以帮助有：

• coping with difficulties around procedures like blood tests, injections and scans
• adjusting to a new diagnosis or treatment
• 应对干扰生命的症状，例如流动性和疼痛减轻
• 寻找解决他人问题/反应的方法
• 帮助他人了解您的病情及其影响
• dealing with worries of any kind, but commonly worries about keeping up with your peers, concerns about the future and fears about not making the most of life.

心理学家经常使用的四种主要疗法是：

• 认知行为疗法（CBT）
• 基于正念的压力减轻（MBSR）
• 接受和承诺疗法（法案）
• psychodynamic therapy.

一些治疗课程可能会涉及整个家庭或家庭成员，因此您和您的家人可以有一些时间谈论发生的事情。这些都称为说话疗法。

If you’re interested in any of these theories and therapies, ask your rheumatology nurse or consultant if it’s possible to be referred to a psychologist.

Cognitive behavioural therapy

认知行为疗法（CBT）是谈论困难并寻找不同的思考方式的结合。

目的之一是了解如何受到有关特定困难的互连思想，感觉，身体感觉和行动的恶性圈子的影响。

Mindfulness-based stress reduction

基于正念的压力减轻（MBSR）使用冥想型练习，有时是瑜伽和各种思维体练习，以帮助应对忧虑和紧张。它通常被用作疼痛的帮助。

Mindfulness teaches you to pay attention and focus on the present moment.

接受和承诺疗法

接受和承诺疗法或采取行动是为了找到接受您无法控制的事物的方法。同时，它可以帮助您根据对您最重要的选择做出选择并采取行动来改善生活质量。

Psychodynamic therapy

With this therapy, you're encouraged to talk freely to the therapist – often simply the first things that come to mind, rather than attempting to shape ideas before they’re said.

不需要您的思想和感受以时间顺序或线性的方式分享，但更多地以自发的方式分享，而不必担心您在说什么是痛苦，不合逻辑还是听起来很愚蠢。

If you’re interested in any of these theories and therapies, ask your rheumatology nurse or consultant if it’s possible to be referred to a psychologist.

如果学校有电梯，您可能可以使用它而不是楼梯。如果您的关节炎意味着您很难走路，那么您可能会要求您的课程在底楼。如果您也在底层上储物柜，并且您每天不必将书籍带回家，这可能会有所帮助。

If you sometimes have lots of pain in your feet or when walking, you might be allowed to wear comfortable trainers at school if that helps.

You may need a special pass for some of these, which you can show to a teacher if you're asked.

有些关节炎的人非常高兴与朋友和同学谈论他们的状况。其他人则不太热衷于这样做。这个决定完全取决于您。您可能会发现，告诉某些人有关您的病情，您会感觉更好。好朋友应该支持和理解。

您没有什么可尴尬的，许多年轻人患有病情。

由你谁你告诉关于你的情况。This might be something that you discuss with your parents and teachers first to help you decide who you might want to tell.

如果你想让你的同学了解你condition you could always ask your teacher to tell the class. Your classmates might be very interested in arthritis and want to ask you questions. Practice some short phrases in case someone asks you a question, for example: “I have arthritis which makes my joints painful sometimes.”

You could also perhaps explain how arthritis doesn't just affect older people.

尽管这不太可能，但如果您遇到任何戏弄或欺凌，那么确保立即停止的责任是学校的责任。如果确实发生这种情况，请告诉您的父母和老师。

If your arthritis is active, you may not always be able to do PE and drama if they’re particularly physical lessons.

Talk to your PE and drama teachers about how your arthritis can affect you and how you feel when it's bad. You might be able to still take part but in a less intensive way if your arthritis doesn’t allow you to on some occasions.

请记住，最好尽可能多地参与学校生活的各个地方，而这种运动对于保持健康和健康很重要。

If you need to have time out of school for hospital appointments or treatment, your school will be able to help by providing work for you at home or in hospital so you don’t fall behind. You should also be able to get text books and other learning materials that will help you.

您应该可以通过电话或电子邮件与您的老师交谈，以获取有关您的工作的反馈。

It’s important that you or your parents keep in touch with your school. Good communication is always important, but especially if you need time off school.

Some hospitals run clinics for young people in the late afternoon or evenings. If these are available it can allow you to miss less school for appointments and treatments. Ask about this with the doctors and nurses who look after you. There will be someone in this team whose job it is to talk to your school about how you’re doing.

If you have time off school, you might find it tough to fit back in with your friends and classmates when you go back. If you have to miss days, maybe you can keep in touch with your friends by text, email, Skype or letter. Your friends will be missing you and will want to know how you’re getting on.

决定正确的大学可能与选择合适的学科一样重要。并非所有学生都离开家去上大学，因为越来越多的年轻人选择在家中住在本地出于财务和其他原因而在当地学习。

在家附近学习可能会为您带来好处，例如，如果您不适并保持同样的GP，风湿病团队和药剂师，则可以得到家人的密切支持。

If there are few suitable universities or courses locally, you could look into distance learning opportunities such as those offered by the开放大学。

如果您决定搬走，那么访问您正在考虑的大学很重要。尝试回答以下问题：

• 无论您还是不适，您将如何管理？
• 大学建筑的分布如何？
• 您离大楼有多远？
• What's the journey like to your parents'/carers' home?

所有大学都有一个支持学生福祉的团队，通常称为学生支持办公室或学生福利办公室。

在申请之前，请与他们联系，以讨论他们可以提供的支持和安排。最好与他们谈论您的关节炎。

一旦您被大学录取，请尽快与他们的学生支持办公室联系，以便他们可以帮助您解决诸如住宿之类的问题。

您越早与他们联系并告诉他们您的病情，他们提供的帮助就越多。他们将与您合作，确定您需要什么支持并帮助您安排它。他们可能能够提供帮助：

• finance, for example helping you to process a Disabled Students' Allowance application (see below)
• 住宿，例如帮助您在底楼和靠近学习的地方获得房间
• informing course leaders and tutors if you become unwell or need extra support
• 如果您变得不适，请获得扩展的课程工作截止日期
• 在考试期间获得特殊条件，包括休息时间，额外时间或抄写员（当您说的那样写答案的人）
• 访问咨询。

您可能觉得目前不需要额外的支持，但是无论如何与学生支持官交谈是一个好主意。关节炎是不可预测的，如果您确实遭受爆发，制定计划将使事情变得容易得多。

Disabled Students' Allowance (DSA)

您可能有权通过残疾学生的津贴（DSA）获得财务和实践支持。这可以为诸如：

• 笔记本电脑
• 人体工程学椅子
• 电子设备记录讲座。

有关更多信息，请访问www.gov.uk。

随着您的长大，您可能承担了更多的管理关节炎责任。您可能已经组织了医生的约会和重复处方。如果您尚未担任主角，即使您现在打算在家中生活，准备大学也可能是一个好时机。

查看您对病情和正在接受的治疗的了解。阅读更多有关JIA。

Looking after yourself by eating well, exercising regularly and getting enough sleep will help you to perform to your best and make the most of university. Read more abouthow you can help yourself。

Remember that having a chronic condition like arthritis can affect your emotions as well. It's not uncommon to experience low mood and feel frustrated or isolated. Read more about feelings and emotions.

Arthritis is unpredictable. Even if you've been well for a long time, it's important to know what to do if:

• 您的病情改变
• you have a flare-up
• you suffer side-effects from your medication
• you get an infection.

了解如何联系您的风湿病团队 - 大多数人都有一个电话号码进行建议和紧急约会。

用新的GP注册

如果您要搬到新区域，则需要在那里注册。如果您从全科医生那里得到任何定期处方，则需要与新的全科医生讨论这一点，最好与您的风湿病学家联系一封信。

Know how to make an appointment with your GP and how to use their out-of-hours service. Check where the nearest walk-in centre and accident and emergency services are and how you would get there. You can also contact NHS 111 when you need urgent medical help or advice but it's not a life-threatening situation.

Registering with a rheumatologist

Talk to your rheumatologist and specialist nurse as soon as you know which university you're going to. You'll need to consider your options about accessing a rheumatologist:

您现有的风湿病学家可能能够在您的新地区推荐风湿病学家。另外，您应该尽快与新的全科医生预约，并要求将其转诊给当地的风湿病学家。询问是否有风湿病学家专门照顾青少年和年轻人。

If you stay in touch with two rheumatology teams, it's important that just one of the rheumatologists prescribes your medication and has overall responsibility for your care. The other rheumatology service provides a back-up if things change and you need a review.

Your prescribing rheumatologist will need to check any recent blood test results before prescribing some medications. If you have blood tests done somewhere else, you should ask for the results to be sent to the person prescribing your medication or take a copy with you to your next appointment.

If the new rheumatology team will take over prescribing your medication, talk to your existing rheumatologist and specialist nurse as early as possible. It may take several weeks or months from the time a referral letter is sent to your first appointment with the new rheumatologist. If you have medication by injection or infusion, it may then be another few weeks before you receive your first course of treatment.

如果你没有得到约新感冒atologist in good time to continue your supply of medication, you should contact them, explain the situation and ask for an earlier appointment. Alternatively, contact your existing rheumatology team and arrange to return there temporarily. The sooner you let someone know, the better.

You may have regular appointments with a rheumatologist or specialist nurse, and for blood tests (depending on what medications you take). It's important to attend these appointments or to get in touch to reschedule if you can't attend.

Taking your medication

按照处方服用药物有助于防止爆发。最好在用完之前提醒您的日记或日历以订购更多药物。

You're eligible for free prescriptions while you're aged 16–18 years old and in full-time education. After this, you have to pay for your prescriptions unless you qualify for certain benefits, such as Income Support.

当前的处方费为每项8.20英镑。处方预付证书（PPC）可在英国获得。一份12个月的证书的价格为104.00英镑，如果您一年中需要13个或更多规定的物品，则可以为您节省资金。PPC可通过10个月度直接借记分期付款获得。有关更多信息，请访问www.nhs.uk

被组织起来

Recording all your appointments in a diary or calendar should help you to remember them. Make sure you save the information in a couple of places in case your diary or phone gets lost.

患有类风湿关节炎的22岁的嘉莉说：“当我上大学时，我有一个家庭组织者日历，这些日历为家庭的不同成员有不同的列。

"I used difference columns for different parts of my life – for example my social life, my studies and my healthcare. I needed two for my healthcare!

"This really helped me to stay organised and all my details of appointments and other important things I needed to remember were in one place. I could see if there was a clash. These calendars are in stationery and book shops."

When Carrie did need urgent medical support while she was living away at university, she found that the 111 NHS telephone service was very good.

"I called them up because I didn't want to be sitting in a hospital waiting room for a long time," Carrie said.

“这使我可以预约预约，并且因为他们可以访问我的医疗信息，这意味着他们已经准备好帮助我。”

大学is a great chance to make new friends, enjoy a vibrant social life and perhaps meet a partner. Read more about relationships.

大学的朋友实际和情感上互相支持。有些人更喜欢告诉所有朋友他们的关节炎，而另一些人则告诉很少的人。做适合自己的事情，但是您可能会发现至少要告诉一些值得信赖的朋友，他们在糟糕的一天时可以更体贴，并且会明白如果您选择退出某些活动，例如喝酒。阅读有关酒精的更多信息。

21岁的弗朗西斯卡（Francesca）在十几岁的时候被诊断出患有少年特发性关节炎。因为我正在服药而喝酒，然后人们没有问我是否要喝酒。”

大学生活可能非常忙于工作和社交，因此不要努力做任何事情。重要的是：

• listen to your body
• plan
• 步伐自己
• 优先考虑对您最重要的活动。

阅读更多有关planning, prioritising and pacing。

毫无疑问，毫无疑问，您会享受远离家乡的更大自由，但请记住，定期与父母/护理人员交谈可能会非常放心和乐于助人。

出门在外，第一次照顾自己可能是困难而孤独的。大多数人不时挣扎，这可能有助于与朋友，家人或专业人士谈论事情。学生支持办公室可以查看您可能会从中受益的任何额外实用帮助，并使您与辅导员保持联系。