by Dr Hatel Bhatt and Dr Natalie Cook
We joined the Paediatric Sickle Cell and Thalassemia Team earlier this year and we are both excited to be part of the team and to be able to support children, adolescents and their families with Sickle Cell Disease (SCD) and Thalassemia. We are both qualified psychologists who are specialised in being able to support children, adolescents and their families who might experience a range of difficulties with their emotional well-being, as a result of having a lifelong chronic health condition.
Role of psychology in SCD and Thalassaemia
Our role is to provide psychological support to children and young people who are living with SCD and thalassemia, and their families/ carers who are supporting them.
Children, young people, and their families can experience difficulties when trying to cope with the condition on a day-to-day basis. We are aware that living with SCD and Thalassemia can impact upon school, peer relationships, academic progress, and social and developmental aspects of growing up, and may therefore limit your quality of life. We are also aware that difficulties in these areas can, at times, impact upon your emotional well-being and contribute to feelings of sadness, anxiety and worrying. You may also experience feelings of being isolated from your peer group and/or family and friends, who may not understand how you are feeling. We therefore believe that psychological support can be beneficial to find effective ways to support children, adolescents, and their families with these challenges.
Therapy and assessments
Psychological support can be offered through individual and family psychology sessions at hospital or school; in some cases, we may facilitate home visits as well. Input from us can also be provided during your clinic consultation with the paediatric team and during your admissions.
Psychology sessions are used to develop ways to help with a range of things such as: pain management, coping with friendships, missing school due to hospital, and having a safe space for the child/young person to talk, as well as for the family to share difficulties they may have in coping. Specific support is provided to parents who may have difficulties with understanding the diagnosis and would like more information about support they can receive to help their children.
Psychological support can also be particularly important for children and young people, where psychologists are able to identify learning strengths and difficulties through neuropsychological testing.
Liaison with school and community services
In addition to psychological therapy and support, we will often liaise with schools to ensure that children and young people are provide with the appropriate support needed to engage positively with their education. This can be facilitated in many ways. We are able to provide neuropsychological/cognitive assessments that can help to inform educational heath care plans (EHCP), as well as assess the overall learning and emotional support that a child or young person has in school.
In addition to formal assessments, we can also take a role in organising school meetings to review school health care plans along with your community nurse. This can be particularly beneficial as we can assist schools in developing day-to-day strategies to support children and adolescents in school, as well as during more stressful periods in the academic year, such as exam times. We can also help to facilitate the process between hospital school and community school, with ensuring that school work is passed on during long periods of admission.
Other community teams
Our role as part of the Paediatric Sickle Cell and Thalassemia medical team also comes under a national and specialist service for South London and Maudsley (SLAM) CAMHS- Child and Adolescent Mental Health Services. This means that we can facilitate input from Paediatric Liaison CAMHS teams if needed, for more specific assessment or treatment for your child’s mental health, such as, assessments for social communication difficulties, specific treatment for depression, anxiety, and other associated mental health diagnosis.
We also have good relationships with local community CAMHS teams, and can refer children, young people, and their families to these teams, if felt that this would be more helpful. We also work closely with community nurse specialists to help provide holistic care, and help with the management of your health and emotional needs.
Transition to adult services
In addition to the above, psychological support might also be needed to help families and young people with transition from paediatric teams to adult teams. We form part of the transition clinic where we can to help facilitate the transfer of care process. We recognise that this time can be a difficult and anxiety provoking time for young people, and their carers/families. As well as working closely with the transition nurse specialist, we also look to liaise with adult psychology teams that are associated with the Adult SCD and Thalassemia medical team. This is to ensure that there is a smooth transfer of care with respect to on-going psychological input, if required.
How can you be referred to us?
If you are interested in seeking psychological input for your child or family to help cope with their health condition, please speak to your medical team in your next consultation. They will then be able to refer you to us, or be able to offer you more information about our services.
This article first appeared in Red Cell News Issue 9