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On 16th May Erica Pope and Angela Hatcher from the Learning Disability Primary Care Liaison team of Hastings and Rother Clinical Commissioning Group joined the drop-in. Erica, a Learning Disability Liaison Nurse and Angela, project support officer, highlighted the importance of being on a GP’s learning disability register. This is so that a person’s support needs and communication support is fully considered and reasonable adjustments are made when attending a GP surgery. When a child turns 14 years old, they should then be invited for an Annual Health Check.

My Care Passports were discussed as a vital document to support a child or young person who may be admitted to hospital or have a hospital appointment. Erica brought along My Care Passport templates for families to take away. A digital template is available to download and type into here:

http://www.surreyhealthaction.org/assets/files/My%20care%20passport%20-%20enabled%20adobe%20reader%202.pdf

Families shared how distressing it can be, especially in emergency situations, to communicate specific details around a child’s needs. New faces, health professionals unfamiliar to a child’s needs and changes in environment can all contribute to growing anxiety for children and young people with complex support needs, their families and carers. The My Care Passport is a tool that can be used to give hospital staff an overview of how a person communicates, their likes and dislikes alongside medical needs.

Speaking about Care Passports, Erica Pope says:

“’This is me’ Care Passports ensure information is in one place, in a format that can move with them between their home and care or health settings. This isn’t just information about their health, but also details such as likes and dislikes, methods of communication, interests and the important people in their life.”

Angela added: “a notable example of when a Care Passport came into play and made a difference to an individuals experience and support at hospital was when a young man was admitted into hospital and about have a blood test. In his Care Passport it was noted that he would become distressed when seeing a needle. It was also noted in his passport that he was an avid fan of Premier League football. The nurse was able to strike up a conversation with the young man about his love of football which helped to divert his anxiety and relax him.”

Summary Care Records vs Enhanced Summary Care Records

Summary Care Record (SCR) is an electronic patient record, a summary of National Health Service patient data held on a central database covering England. The purpose of the database is to make patient data readily available anywhere that the patient seeks treatment. SCRs contain only basic information such as name, date of birth, regularly prescribed medication and allergies. If your child has a complex support need or learning disability they are entitled to have additional information added to their basic record. This is called an Enhanced Summary Care Record (ESCR). Additional information can be added to a SCR by your GP practice.

For further information on this project please contact Erica Pope, Learning Disabilities Nurse at Erica.pope@nhs.net or Angela Hatcher, Admin Support at angela.hatcher@nhs.net 01424 735600 option 2 extension 5227.

Useful groups and links shared:

iContact is a Lewes based parent-led collective focusing on working with families and services supporting children on the autistic spectrum to bring about change. http://icontactautism.org

East Sussex EHCP Experiences is a group for parent and carers of children and young people with Special Educational Needs and disabilities and offers support for putting in place Education Health and Care Plans.  https://www.facebook.com/ESehcpexperiences/

Health in Mind is an NHS organisation providing free courses and other types of therapies in East Sussex that help with stress, anxiety and low mood. https://www.healthinmind.org.uk

Afaisic England

Afasic was founded in 1968 as a parent-led organisation to help children and young people with speech and language impairments and their families. Afaisic provide information and training for parents – and professionals – and produce a range of publications. Members meet in local groups in many areas of the UK.

Ipsea

IPSEA is an organisation providing free legally based independent advice to families with children or young people with any form of special educational needs and/or disability (SEND). IPSEA run a free Advice Line and a Tribunal Support Service. Visit https://www.ipsea.org.uk for further information including free and downloadable legal guides and resources.

Books and films discussed:

A Boy Made of Blocks by Keith Stewart

A book exploring autism and a father and son relationship written by Guardian games editor, Keith Stewart.

Chris Packham: Asperger’s & Me

Television presenter and author best known for the CBBC children’s nature series The Really Wild Show and more recently Springwatch shares his experience in the world and reveals understanding around neurodiverse communities.

Link to full-length film: https://vimeo.com/252876361

To find out more about Peer Support Network initiatives and events such as Connecting Families meetings, email Esther Springett, Community Networks Co-ordinator – esther@projectartworks.org

 

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