Paediatric Psychology & Liaison Service (PPALS)

Consultant Psychiatrist

Dr Angela Jones Dr Ashley Cameron

Consultant Clinical Psychologist

Dr Rachel Brackenridge

Clinical Psychologists

Dr Catriona Moffat Dr Grainne O’Brien Dr Shannon Connolly Dr Sarah Ross Dr Cyan Harte Dr Eleni Vasilopoulou Dr Orlagh Keating Dr Suzanne Felix Dr Alyx Hamilton-Smith Dr Emma Martin Dr Jordan Bibby Dr Holly Robertson Dr Molly Bruce

Clinical Neuropsychologists

Dr Kirsten Verity Dr Jo Phillips

Assistant Psychologists

Chloe Fyfe Cari Klipp Grace Mackney Elana Bertram

Psychosocial Nurse Practitioner

Orla Duncan

Play Therapist

Lynn McSkimming

Art Therapists

Pauline Colles

Admin Team Lead

Tracy Dishington (Admin Team Lead) Molly Rushforth Telephone: 0131 312 0528 (with an answerphone service) Monday-Friday, 9am-4pm Trainees and Assistant Psychologists also work within the team under supervision

Help in an emergency

In emergencies, please contact your GP or NHS 24 in the first instance. If necessary, contact the Royal Edinburgh Hospital switchboard – at 0131 537 6000. The Mental Health Assessment Service (MHAS) will discuss the situation with the specialist Child and Adolescent Psychiatrists on call.

Professionals based within the RHCYP or CAMHS usually refer young people or their families to our team. For example, this might include a nurse specialist or a consultant leading your treatment and care. Professionals involved in your health care will discuss a referral with you first and gain your permission before contacting us.

What happens next?

We will contact you to arrange an assessment appointment. This usually takes place in a clinical setting, or sometimes we meet young people in their ward. We have a waiting list but will offer an appointment as soon as we can. We sometimes send you some self-help information to give you some ideas to try out while you wait for your first appointment with us.

What happens when we meet?

When we first meet with young people or their families, we usually:

• Talk about your concerns and try to make sense of them together with you
• Try to think about things that might help
• Explain what our service offers
• Think about whether we are the best service to help you
• Come to an agreed plan between us.

We may meet with you more than once to do this and sometimes it is helpful to have your parent or carer at your appointment to think about your concerns and help everyone work together. Examples of the help available from PPALS include:

• Individual talking sessions and opportunities to share how you feel.
• Art therapy or special play sessions to explore your feelings.
• Sometimes we run group sessions which can provide opportunities to share how you feel with other young people with health conditions.

All of the help and support available from PPALS is optional and each plan is put together and agreed upon individually, according to what help may benefit you most.

Help in an emergency

In emergencies, please contact your GP or NHS 24 in the first instance. If necessary, contact the Royal Edinburgh Hospital switchboard – 0131 537 6000. The Mental Health Assessment Service (MHAS) will discuss the situation with the specialist Child and Adolescent Psychiatrists on call.

About PPALS Guided Self-Help Service

If you are a young person who has recently been diagnosed with a new health condition, you might be feeling a range of emotions, along with your parents or family members. Sometimes a diagnosis can feel like a relief if you have been worrying about unexplained symptoms for a while. It might take some time to process this kind of news, especially if it has happened unexpectedly. A new diagnosis can often lead to difficult thoughts and feelings which some people describe as ‘being on an emotional rollercoaster’. Your medical team might give you information about how to cope after a new diagnosis and there are other ideas and resources on this website that are helpful to explore. Further information and suggestions can be found in the resources below. Sometimes, it might be helpful to meet with a member of the PPALS team. Your medical team might discuss this with you and if you agree, they can make a referral to us. Coping with a new health condition – information for young people Coping with your child’s new health condition – information for parents and carers

Children and young people can sometimes become fearful or worried about certain aspects of the medical procedures and treatments they need. This can be really difficult for lots of children and young people and is sometimes known as procedural anxiety.

Children and young people who struggle with procedural anxiety may experience worry when they know a medical appointment is coming up which may make it difficult for them to attend the appointment. At PPALS, we work closely with our NHS Lothian’s Play Service to support you and your child to get familiar with the hospital and the necessary procedural equipment.

Sometimes, it might be helpful to meet with a member of the PPALS team. Your medical team might discuss this with you and, if you agree, they can make a referral to us.

Find out more about our NHS Lothian’s Play Service.

Help to prepare children and young people for procedures and visits to the hospital with a range of videos at What Why Children In Hospital

Pain is the unpleasant physical sensation we experience when a part of our body becomes injured or could be injured. Sometimes pain can last for longer than we expect it to after an illness or injury, even when our body has healed. ‘Persistent pain’ is when the discomfort has lasted for 3 months or more and does not go away with normal pain treatment. This discomfort can both affect - and be affected by - things like our emotions, thoughts, appetite, sleep, and daily routine. Learning about how to manage stress, anxious thoughts, and your energy level can help you cope with persistent pain and reduce the impact that it has on your life. Your medical team might give you information about coping with pain and there may be other ideas and resources on this website that are helpful to explore. Sometimes, it might be helpful to meet with a member of the PPALS team. Your medical team might discuss this with you and, if you agree, they can make a referral to us. Coping with pain – a guide for young people My pain toolkit

Persistent physical symptoms (PPS) are physical symptoms without an obvious physical cause (i.e. the doctors can’t see anything on a scan or from a test). They are also sometimes known as functional or medically unexplained symptoms. These symptoms are real and can be very distressing and debilitating for children and young people. They are also very common, with 1 in 4 children experiencing them. However, they can sometimes be difficult for others to understand and can cause considerable worry for those who have them. The most common PPS we tend to see are tummy pain, other pain, headaches, nausea, dizziness, difficulty walking, seizures, and visual difficulties. It is common for children/young people to have more than one symptom. Often children/young people experience their unpleasant physical symptoms for a long time before they are given a diagnosis of PPS, but other times they have suddenly become very unwell and are given the diagnosis more quickly. Once your medical team have talked to you and explained your symptoms, they should give you some information about how you can manage them. Please see the links below to find out more about PPS and their treatment. Sometimes it might be helpful to meet with a member of the PPALS team as there is good evidence that psychological intervention can help reduce symptoms and any associated worry or distress. Your therapist can also help others (e.g. school) understand your symptoms and work with them and your family to get you back to doing all the things you previously enjoyed. Your medical team might discuss a referral to PPALS and, if you agree, they will contact us.

Resources about PPS

NHS Great Ormond Street Hospital for Children - ‘Functional symptoms - Information for families’ leaflet Resources and further information about managing persistent physical symptoms can be found on the ‘FND Guide’ website

We work closely with the paediatric gastrointestinal (GI) team because we know that problems like tummy pain or feeling sick can impact on your emotional well-being and your daily life. Sometimes, stress and worry can affect how your gut is working because your brain and tummy are so closely linked. Learning more about how to manage stress, worry or feelings of low mood can help with managing tummy problems, reducing the impact they have on your life. Your medical team might give you information about different ways to manage difficult emotions as part of your treatment. Sometimes, it might be helpful to meet with a member of the PPALS team. Your medical team might discuss this with you and, if you agree, they can make a referral to us. Read more about the GI team.

Sometimes children and young people might have a frightening or stressful experience, like an accident, that leads to them coming to the hospital. Some children and young people might have a frightening experience in the hospital, such as needing to have an emergency procedure. Going through difficult experiences is sometimes called trauma. A psychologist can support children, young people and their families to better understand and manage their emotions following major trauma. This may include offering a space to discuss what happened, helping families reflect on ways of coping, and providing support with any distressing experiences in the hospital. If the major trauma involved a head injury, psychologists can also help with understanding and adjusting to any cognitive changes, such as difficulties in attention, concentration, memory or communication. Your medical team might give you information about how you can cope after difficult experiences and there may be other ideas in the resources below. Sometimes, it might be helpful to meet with a member of the PPALS team. Your medical team might discuss this with you and, if you agree, they can make a referral to us. When something scary happens Looking after yourself after trauma – a guide for young people Coping with difficult experiences – advice for parents Supporting your child following trauma

Sleep plays an important role in helping your body to rest, recharge, and repair itself after an illness or injury. It is important for supporting your mental well-being too. Getting a good night’s sleep can improve your mood, help your concentration and memory, and give you the energy you need to complete tasks and activities throughout the day. Children and young people sometimes experience poor sleep if they are feeling unwell, experience pain and discomfort, or have to spend long periods of time in the hospital. Establishing a good sleep routine, making positive changes to your bedroom, and practising relaxation can improve poor sleep and help you feel more rested. Read more about sleeping better on the ward during a stay in hospital. Visit our well-being hub to find out more about sleep.

The paediatric neuropsychology service supports families with children and young people who have neurological or medical conditions and injuries that affect the way their brain functions. Sometimes these conditions can impact their thinking, emotions, behaviour, peer relationships, and education. If you are affected, your medical team might give you information about how you can manage these issues and there may be other resources on this website that are helpful to explore. Sometimes, it can also be helpful to meet with a member of the neuropsychology team. Your medical team might discuss this with you and, if you agree, they can make a referral to us.

Cognitive Assessment

Sometimes children and young people are referred to us to complete a cognitive assessment. A cognitive assessment looks at their thinking skills, everyday living skills, behaviour and emotional wellbeing. This can help us to understand more about their strengths and difficulties and how we can best support them with useful strategies and tips. We usually meet the young person and their family for an initial appointment to ask some questions and check that they are happy to have a cognitive assessment. The assessment involves completing tasks and puzzles with the young person over 2-3 appointments, to explore their verbal and visual abilities, memory, processing speed, attention, and different elements of problem-solving. To help us gain a full picture, we also ask their family and school to complete some questionnaires about the young person. We provide feedback to families after the assessment has been completed and also share this information with the young person’s school. Read more about having a Cognitive Assessment.

What is PAVES™?

PAVES is a type of mental health screening which allows medical professionals in epilepsy clinics to know more about a child or young person’s mental health when they attend epilepsy clinic appointments. This is useful because the literature shows that young people with epilepsy are at increased risk of mental health difficulties.

PAVES can also help to identify what support or information a child or young person needs so that it can be offered at epilepsy clinic appointments. PAVES helps medical professionals by directing them to recommended interventions and resources. The online screening tool uses a ‘Strengths and Difficulties Questionnaire’ along with qualitative questions (open-ended questions with space to add detail in their own words).

How does PAVES™ work?

Before attending their epilepsy clinic appointment, parents are asked to complete an online questionnaire with their child. When they submit their answers, the software gives a full score (shown in a traffic light style) to their epilepsy doctor or nurse. The results are discussed at the clinic appointment and will also be uploaded to the patient’s record.

Each child’s lead epilepsy doctor or nurse can access a ‘pyramid’ of stepped interventions, which vary by the level of mental health need and any concerns identified in the clinic. The PAVES interventions include:

• signposting to a variety of CAMHS community resources (including epilepsy-specific and more general resources),
• self-help materials
• referral into psychology-led groups

If there are any significant mental health concerns or risks, they are discussed with our PAVES psychologist after the clinic.

About PAVES

PAVES was developed by Dr Kirsten Verity, Paediatric Neuropsychology Lead, in 2016 and stands for ‘Psychology Adding Value Electronic Screening’. The programme was developed using funding from Edinburgh Children’s Hospital Charity and Realistic Medicine.

Due to the success of PAVES, NHS England has been interested in rolling out a similar system in their health trusts. Discussion and training around this are currently underway. In the Lothian region, several other children’s medical teams are interested in developing a PAVES for their young people and a pilot is currently running for children and young people with diabetes.

Living with an appearance or visible difference or having a child with an appearance or visible difference can feel worrying. How we cope with our differences is linked to our personality, family responses, school support and our age.

Many children and young people have few or no concerns about their visible difference but it is usual for young people to become more self-aware and engage in more social comparison the older they get.

You may be anxious about how you or your child might cope with questions or unwanted attention, or you might feel self-conscious about your appearance.

Talking honestly, positively and with confidence about any visible difference will help with self-acceptance, resilience and well-being, and the Changing Faces website has some useful resources to help with this.

A really useful strategy for dealing with unwanted questions is ‘explain-reassure-distract’, for example, ‘I was born this way; it doesn’t hurt; are you going to football after school?’. Sometimes, it can be hard for brothers and sisters of the child or young person with visible differences.

They may feel protective of their sibling, notice or resent any interest and attention that their brother or sister’s visible difference attracts, and may get asked questions about their brother’s or sister’s condition or appearance. If you notice this happening, you can encourage them to use the strategies mentioned above and the Changing Faces website has useful tips too.

It can be really helpful for children and young people with visible differences, and their families, to connect with other young people with similar conditions, to share experiences and normalise their feelings.

It may be possible to do this through the medical team you are under, or through charities such as Changing Faces or Children’s Health Scotland which run a support group for young people living with physical health conditions (called SMS Connect).

Sometimes, it might be helpful to meet with a member of the PPALS team. Your medical team might discuss this with you and, if you agree, they can make a referral to us.

Resources

• Changing Faces – advice, guidance, and support for children, young people and adults living with a visible difference
• Reach UK – advice, guidance and support for children and young people living with upper limb differences
• Children’s Health Scotland – SMS Connect and SMS F2F: self-management programmes that support children and young people living with health conditions
• Confidence Boosting for Appearance Differences – This leaflet is here to help you build your confidence and find ways to manage difficult thoughts and situations about your appearance difference.
• When your Child has an Appearance Difference – This leaflet aims to provide some helpful information for parents and carers of children with appearance differences.

When your child is diagnosed with a health condition or is going through treatment in a hospital, you can be faced with a whole host of new challenges affecting the whole family. In such difficult circumstances, everyone can react differently, depending on their own past experiences and coping strategies. There may be days when you feel okay, and other days when you feel that it is all a bit too much. It is okay to experience strong and frightening emotions even though you might be trying very hard to ‘hold it all together’. This is a normal response to what is likely a difficult time for you and your family.

It is important that parents and carers have opportunities to look after themselves as much as possible throughout this time. Whether this is all completely new, you are in the middle of treatment or are years beyond this, it is important to get the support that you need to stay well.

Read more about parent and carer wellbeing

NHS Lothian also has information for parents and carers about help and support available when you have a child in hospital.