All You Need to Know

• Waiting for a physical health diagnosis

  It can take a long time to be referred for an appointment with a specialist, to have tests and to receive the results. Many people feel anxious during this time. You may feel like you have no control over what is going to happen to you and the future may feel very uncertain.

  There is no right or wrong way to deal with these feelings. Some people find it helps to carry on with normal activities as much as possible. Other people may feel they cannot concentrate on anything else.

  Whatever emotions you may be feeling, it's good to talk things through with someone you trust. A friend, member of your family, or even someone you don't know, like a counsellor can help you to get some advice to see things from a different point of view and offer support.

  Contact Kooth here for counselling

• Waiting for a mental health diagnosis

  If you have been having mental health problems and have reached out for help, you may have been referred to Child and Adolescent Mental Health Services (CAMHS) if you are 11-18 years old, or to the Adult Mental Health Service if you are over 18. 
  
  Both services support many young people, so the waiting lists are often very long. Lots of people have to wait a long time for first appointments, plus any following treatment and support. They should be able to give you a rough idea of the waiting time when they first get your referral.

  Waiting for help can feel really upsetting and worrying, especially if you're finding it harder to cope with your mental health.

  It might help to:

  • Talk to your GP – ask them about other support you can try while you wait 
  • Contact CAMHS or the Adult Services team – they should be able to tell you when you are likely to get an appointment
  • Explore other options for support – you might be able to get help from school, charities or community services near you 
  • Speak to a counsellor - services like Childline and Kooth have counselling services available for young people right now 

• Waiting for a neurodiversity assessment

  There are record numbers of young people who are currently on waiting lists for ADHD and Autism assessments all over the country. 

  After you have been referred, there is a long waiting time until the assessments are started. During this period you may feel worried, anxious or upset. It may feel confusing to not have an official diagnosis and you may feel in limbo.

  It's totally normal to feel this way when you face uncertainty about your future and there will be plenty of other people of your age feeling the same. The good news is that there are plenty of charities, organisations and services in our area who you can reach out to, even before any diagnosis is made. 

  Some charities and organisations to take a look at are:

  Norfolk SENDIASS - SEND advice, information and support.

  Autism Anglia - Independent charity providing care and support.

  NANSA - Norfolk & Norwich SEND Association info for young people. 

  ASD Helping Hands -Family support or young people with Autism

  Norfolk and Waveney Mind - ADHD Information and support for young people. 

• What is advocacy and how can it help me?

  You might not always feel like you are being listened to, especially when it comes to getting treatment and support for your mental health.
  
  Talking to lots of professionals about your body and mind can feel overwhelming, and it can be upsetting when you feel that your views aren't being listened to.

  Advocacy means getting support from another person called an advocate, who help you to voice your views, come to appointments with you and make sure you get the best outcomes. Advocates are independent from the NHS and social services so they will be looking out for your best interests only. 

  Find out more about advocacy for young people here

• Why should I be careful about searching for information?

  It's common to feel out of control or unanchored when you are waiting for a diagnosis and to feel the need to learn more about an illness, or symptoms. 

  Searching for information can help you feel more in control while you wait for your results. However, if you are not sure of the diagnosis, some information can be confusing and upsetting.

  It may be better to wait until a diagnosis is made before looking for more information. If you do decide to find out more, it is a good idea to make sure the information is from a reliable source.

  Avoid self-diagnosing illnesses and taking research from the internet as fact. 

  It's helpful to:

  • Make notes of any symptoms or concerns to take to appointments with your specialist doctor
  • Be aware that some information might not be accurate or scientifically proven

• The wait is affecting my mental health, where can I get help?

  Waiting a long time for help can feel really hard, but remember you're not alone and it's not your fault. To cope while waiting, you could try some things on your own to help yourself:

  • Explore different ways to look after your wellbeing 
  • Journal or write about how you feel and what you're experiencing. You could also read content written by young people who have gone through similar experiences, like blogs
  • Read, listen to, or watch things that teach you to cope with how you are feeling 
  • Speak to other young people about what you're going through on message boards online, like The Mix and Childline.

  If your wait is having a big impact on your mental health, it's important to let your GP, and the service who are treating you know. Your GP will be able to help you find ways to cope, and the service you've been referred to will take this into account when looking at your needs going forward. 
  
  

• How do I cope with physical symptoms while I wait?

  The stress of waiting for a diagnosis can cause physical symptoms, these can manifest as:

  • Headaches or dizziness
  • Muscle tension or pain
  • Stomach problems
  • Chest pain or a faster heartbeat

  Combined with any other symptoms you are going through, it can be distressing. 

  While you wait for your assessments or diagnosis, it can be useful to try to make an effort to keep healthy and to focus on your wellbeing. This might mean:

  • Keeping Active - Trying to keep up with your usual levels of activity
  • Eating well - Eating healthy foods and avoiding too much alcohol
  • Practicing mindfulness - Thinking about breathing techniques, meditation or other mindfulness activities to help keep you calm. 

• I want more information about my care, who can help?

  In hospitals there is a service that can help give you information and advice about lots of different parts of your care. 

  The Patient Advice and Liaison Service (PALS) is there to support you with:

  • Health-related questions
  • Helping resolve concerns or problems when you're using the NHS
  • Tell you how to get more involved in your own healthcare

  PALS can also give you information about the NHS complaints procedure including how to get independent help if you want to make a complaint.

  PALS is there to support communication between the hospital, NHS and patients to make sure you feel fully in the loop with information about your treatment. 

  Find more NHS information about PALS here