The SHANARRI wellbeing indicators are the tool used in Scotland to assess and support a child or young person’s wellbeing.
SHANARRI stands for
Children and young people with PANS or other immune mediated neuropsychiatric conditions can be significantly impacted across all 8 wellbeing indicators – these are explored in detail below. This information was co-created in collaboration with parents and carers of children and young people with PANS.
Growing up in an environment where a child or young person feels secure, nurtured, listened to and enabled to develop to their full potential. This includes freedom from abuse or neglect.
There are multiple factors associated with PANS which can impact on a child or young person’s safety, in terms of their actions when they are in a flare as well as the response of others to their symptoms. Examples of these are detailed below, along with ideas for possible supports, which have been effective for others.
PANS symptoms that can impact a child or young person’s safety:
- Anxiety
- Depression
- Disinhibition
- Eating Issues
- OCD & Intrusive thoughts
- Psychosis
- Rage
- Regression
- Seizures
- Sensory issues
- Suicidal ideation
- Tics
Additional factors linked to PANS that can impact on a child or young person’s safety or feelings of safety:
- Accusations of FII / inappropriate allocation of blame onto parents / carers
- Self-injurious behaviour
- Reduction in family income
- Lack of psychoeducation (information and support to help child and family cope with their illness)
- Care-giver burnout and poor mental health
- Scepticism from professionals about the conditions
Possible supports to keep children and young people safe:
- Plan in place to support the child or young person in a flare.
- Consider past unsafe behaviours and agree with child or young person (where appropriate) what actions should be taken to keep them safe.
- Understanding and avoidance (where possible) of triggers of unsafe behaviour.
- Development of a safe space.
- Understanding of PANS and PANDAS by medical, education and social care professionals. PANS+ Scotland GIRFEC training can help with this.
- ‘Safe person’ at school/other activities with a good understanding of the child or young person’s symptoms who can support and respond in a flare.
- Support for carers
It is important to consider the safety of the whole family, in particular siblings, who are also often affected by many of the additional factors listed and can be a target of physically or verbally abusive behaviour.
If this is the case then as part of the flare plan for the child with PANS, there should be a plan for supporting their sibling to keep them safe.
Having the highest attainable standards of physical and mental health, access to suitable healthcare, and support in learning to make healthy and safe choices.
All PANS symptoms impact a child’s or young person’s health, but some cause more challenges than others. It is important to remember that PANS is a medical condition, and the priority in supporting the health of a child with symptoms of PANS is diagnosis and treatment, but while that is ongoing they can be supported to make safe and healthy choices.
All PANS symptoms impact a child or young person’s health, but some are more challenging, including:
- Anxiety
- Depression
- Eating issues
- Headache
- Intrusive thoughts
- OCD
- Pain
- POTs
- Psychosis
- Seizures
- Sleep
- Tics
All PANS symptoms impact a child or young person’s health, but some are more challenging, including:
- Lack of knowledge & understanding of the conditions
- Long waiting lists
- Misdiagnosis / inappropriate referrals
- Lack of access to treatment
- Cost of private treatment
- Inability to articulate needs
- Trauma
- Reduction in family income
- Caregiver burnout
- Masking
- Child not returning to baseline, potentially leading to long term issues
Possible supports to promote the health of a child or young person with PANS:
- It goes without saying that the most effective support will be diagnosis and treatment, however that is not something within the gift of a multi-agency meeting.
- Agencies at the Child’s Plan meeting can seek to bring in supports from other agencies, and they can also share information with GPs in support of a family, such as what they have observed.
- Better understanding of the conditions by all professionals involved with the child or young person, which can help with consideration of appropriate supports.
- Support for children, young people and their families who are going through battle for diagnosis and treatment, such as respite care, Social Work support, Mental health support, Play therapy, Child Disability Payment, support applying for benefits.
“We both went part time as parents, and we sold our house to fund the treatment and education.”
Parent of a child with PANS
Being supported and guided in learning and in the development of skills, confidence and self-esteem, at home, in school and in the community.
PANS can have a significant impact on a child or young person’s ability to attend school or engage in learning. This can be down to a combination of many different symptoms and factors, which will be unique to each child or young person. Those affected need understanding and flexible support.
PANS symptoms that can impact a child or young person’s ability to achieve:
- Anxiety
- Cognition
- Defiance
- Hyperactivity
- Memory lapse
- OCD
- Regression (Language, Behaviour and Skills)
- Sleep
- Visual disturbances
Additional factors linked to PANS that can impact on a child or young person’s achievement:
- Bullying
- Lack of understanding by school or other setting of the condition, and supports needed
- May struggle to attend school
- Lack of suitable support for education outside of school
- Deterioration in school performance
- Impact of untreated symptoms on long term learning ability
- Possible long term impact on ability to access work and fulfil academic potential
- Trauma
- Gaps in learning
- Masking
Possible supports to help a child or young person achieve:
- Understanding and awareness in schools about the conditions and their impacts. PANS+ Scotland offer GIRFEC Training that can assist schools with this.
- Understanding of the individual child or young person, their needs and triggers, and having a suitable flexible plan in place.
- Outreach teaching service where children or young people cannot attend school.
- Clear communication of support process (IEP, CSP etc).
- Flexibility
- Enhanced support for transitions.
- Peer support (where the child or young person is happy to share information about their illness and its impact).
- Alternative assessment arrangements
- Providing opportunities for children or young people to achieve outside of academic settings.
My 15 year old is unable to attend school due to their PANS. It took the school a year and a half to offer suitable learning activities outside of school – and it is only 1½ hours a week
Parent of a child with PANS
Growing, developing and being cared for in an environment which provides the physical and emotional security, compassion and warmth necessary for healthy growth and to develop resilience and a positive identity.
The lack of knowledge and understanding of PANS and other acute-onset neuropsychiatric conditions, and the symptoms themselves can significantly impact a child’s feelings of being nurtured. This is exacerbated by the fact that many families find themselves in a battle for healthcare and education support, adding to the trauma of an already extremely challenging situation.
PANS symptoms that can impact a child or young person’s feelings of being nurtured:
- Anxiety
- Cognition
- Depression
- Eating issues
- Emotional lability
- Intrusive thoughts,
- OCD
- Sleep
- Toileting Issues
Additional factors linked to PANS that can impact on a child or young person’s feelings of being nurtured:
- Lack of knowledge and understanding of the conditions
- Allegations of Fabricated or induced illness (FII) / inappropriate allocation of blame onto parents/carers
- Inappropriate medications and approaches
- Scepticism
- Issues with friends and family and challenged in maintaining friendships
- Self-esteem
- Social isolation
- Masking
- Caregiver burnout
Possible supports for a child or young person’s feelings of nurture:
- Awareness and understanding of the conditions amongst all organisations dealing with the child or young person
- Multi-agency meetings
- Ensuring the child or young person’s voice is fully heard (possibly through advocacy services)
- Believing the child or young person and their parents / carers
- Supporting the ‘family unit’ where appropriate
- Understanding of the child or young person’s unique symptoms and challenges
- Support groups
- Awareness
- Support for children and their families who are going through battle for diagnosis and treatment, such as:
- Respite care
- Social Work support
- Mental health support
- Play therapy
- Child Disability Payment
- Support applying for benefits
- Post diagnosis support
Parents of children and young people in Scotland with PANS have reported that having gone to state services for support, they have instead faced safeguarding concerns.
Parents of children and young people in Scotland with PANS have reported that having gone to state services for support, they have instead faced safeguarding concerns.
A 2023 research report from the Cerebra LEaP programme at the University of Leeds examines how allegations of Fabricated or Induced Illness (FII) are being used across the UK, including Scotland. The report finds that although FII is clinically rare, allegations are widespread, with parents in 3/4 of English authorities reporting them and similar patterns noted in Scotland and Wales .
Key concerns include the significant and often long‑lasting trauma caused to families, the fact that most allegations lead to no action, and the disproportionate impact on disabled parents, who are four times more likely to be accused. The report also highlights that many allegations arise after a parent challenges or complains about a public service, and that current professional guidance relies on “alerting signs” unsupported by peer‑reviewed evidence.
Overall, the findings point to a system that too often responds to parental advocacy with suspicion rather than support.
Having opportunities to take part in activities such as play, recreation and sport, which contribute to healthy growth and development, at home, in school and in the community.
It is common for children with PANS to withdraw from activities which they previously enjoyed. Many have pain, fatigue, and dizziness when they are in a flare, meaning that it would not be advisable for them to do anything too strenuous. Children need to be supported to find activities which they will enjoy which will suit their circumstances.
PANS symptoms that can impact a child or young person’s ability to be active:
- Anxiety
- Depression
- Emotional lability
- Motor abnormalities
- Muscle weakness
- Pain
- Seizures
- Sensory sensitivities
- Tics
- Fatigue
- Cognition
- Eating issues
- OCD
- Regression (skills)
- Sleep
- Toileting issues
Additional factors linked to PANS that can impact on a child or young person’s ability to be active:
- Bullying
- Friendship issues
- Embarrassment
- Time away from activity
- Confidence
- Self-esteem
- Fluctuating nature of the symptoms making it difficult to plan activities
Possible supports that may help a child or young person’s ability to be active:
- Training and understanding of the conditions for anyone working with the child or young person.
- 1:1 / relaxed sessions
- Flexibility / adaptability to meet what the child or young person is able to do on any given day
- Choice
- Small groups
Many children with PANS can’t participate in activities they once enjoyed. It only becomes possible after treatment.
I feel like people think I am being lazy when I can’t do things – I AM NOT! I am exhausted and in pain!
Young person with PANS
Being involved in and having their voices heard in decisions that affect their life, with support where appropriate.
The lack of knowledge and understanding of PANS, along with past scepticism of the conditions can lead to disagreements and misunderstandings with professionals. This can lead to children feeling that they are not being listened to or believed.
It is vital that all those working with a child with PANS have a good understanding of the conditions, and crisis plans are in place that respect the child.
PANS symptoms that can impact a child or young person’s feelings of being respected:
- Anxiety
- Cognition
- Depression
- Emotional lability
- OCD
- Psychosis
- Rage
- Regression
- Tics
- Toileting issues
Additional factors linked to PANS that can impact on a child or young person’s feelings of being respected:
- Lack of knowledge & understanding of the conditions
- Misdiagnosis
- FII / inappropriate allocation of blame onto parents/carers
- Scepticism
- Stigma
- Minimisation of symptoms or experience
- Self-esteem
- Social isolation
- Masking
- Caregiver burnout
Possible supports to enable a child ot young person with PANS to feel respected:
- Understanding of PANS by all people in contact with the child or young person, including undertaking any available training
- Information sharing with peer-groups (where child or young person is in agreement)
- Understanding of Children’s rights under the UNCRC
- Believe the child or young person and their parents / carers
- Access support from advocacy organisations
- Support groups
- Awareness
- Trauma-responsive approach
- Support for caregivers
- Mentors / Role-models
- Plan in place for times of crisis
- Age-appropriate language, approaches and resources
“This is SO hard. There is so much stigma and misunderstanding about mental health issues and the fact that PANS is a medical condition that is treatable makes no difference to the stigma given its horrific symptoms”
Parent of a child with PANS
Having opportunities and encouragement to play active and responsible roles at home, in school and in the community, and where necessary, having appropriate guidance and supervision.
Children with PANS often have compulsive behaviour which they cannot control, and they should not be held responsible for that behaviour. Many also have symptoms of demand avoidance, making offering the opportunity to demonstrate responsibility a challenge, and it needs to be done flexibly and at the right level for the child.
PANS symptoms that can impact a child or young person’s opportunities to be responsible:
- Anxiety
- Cognition
- Demand avoidance
- Disinhibition
- Emotional lability
- OCD
- Psychosis
- Rage
- Tics
Additional factors linked to PANS that can impact on a child or young person’s opportunities to be responsible:
- Lack of knowledge & understanding of the conditions
- Misdiagnosis
- Scepticism about the conditions
- Inappropriate boundaries being set
- Lack of understanding of the child’s baseline – or their potential
- Fluctuating nature of the symptoms
Possible supports to allow a child or young person with PANS to develop responsibility:
- Understanding of PANS by all people in contact with the child or young person, including undertaking any available training
- Understanding of Children’s rights under the UNCRC and the legal framework that surrounds them
- Support groups
- Awareness
- Peer support
- Mentoring
- Flexible boundaries
- Support for whole family unit
- Positive reinforcement
- Flexibility to offer appropriate opportunities that the child or young person can cope with
Striking the balance of developing responsibility can be particularly challenging in families with more than one child. Siblings may feel like their brother or sister with PANS is getting preferential treatment. Young Carers support organisations can be helpful in supporting siblings around this, and other issues.
“You need to have realistic demands, and get the level of challenge ‘just right’. You also need to know when to reduce demand”
Parent of a child with PANS
Having help to overcome inequalities and being accepted as part of their family, school and community.
Many of the symptoms and circumstances around PANS lead to both children and their families becoming socially withdrawn. Children may withdraw in school due to stigmatisation, and many parents have to give up work to look after their child, and face financial hardship, meaning they may also struggle to afford small luxuries like days out.
PANS symptoms that can impact a child or young person’s inclusion:
- Anxiety
- Disinhibition
- Emotional lability
- Enuresis
- OCD
- Psychosis
- Regression (language, behaviour and skills)
- Sleep
- Tics
Additional factors linked to PANS that can impact on a child or young person’s inclusion:
- Lack of knowledge & understanding of the conditions
- Misdiagnosis
- Bullying
- Misinterpretation of the fluctuating nature of the condition
- Friendship breakdown
- Masking (child and family)
- Social isolation
- Reduced social capital of family
- Reduced income of families
- Caregiver burnout
Possible supports that may help a child or young person’s inclusion:
- Understanding of PANS by all people in contact with the child or young person, including undertaking any available training.
- Understanding of Children’s rights under the UNCRC
- Understanding how the child or young person is impacted by their symptoms
- Support groups
- Awareness – in particular peer education (so long as the child or young person has given consent)
- Accommodations
- Financial support to enable child or young person’s attendance at activities
“The loneliness and isolation our children face is heartbreaking… It’s not just the children that often have to mask, but families as well, in order to protect the child affected. That is so isolating for all”
Parent of a child with PANS
