Useful resources
Help for families
Practical support, equipment and organisations that families at HOPE have found useful.
Safer sleep
Anti-suffocation pillows
If your child is having seizures in their sleep, Hope is offering grants to Hope-Tameside registered families to purchase anti-suffocation pillows.
Families that want a pillow, which can potentially reduce the risk of SUDEP (Sudden Unexplained Death In Epilepsy), should contact us or Carolyn Taylor (Paediatric Epilepsy Nurse). If your child is not registered with Hope you may purchase your pillows direct from sleep-safe.co.uk.
Why are ordinary pillows risky?
Ordinary pillows can obstruct the mouth and nostrils and prevent air reaching the lungs. Even a few minutes of oxygen starvation can cause irreversible brain damage. The risk is much greater during a seizure because the person affected will not be conscious enough to avoid the danger. The risk is increased if they are taking medicines that can depress breathing.
How does the anti-suffocation pillow work?
On the surface of the pillow there are many foam ridges that allow air to circulate around and through the entire pillow. Because the pillow is made from foam it's highly unlikely the pillow will become wrapped around a child's head.
The benefits
- Breathability – hand-made from a special soft, highly porous foam with an open cell structure.
- Profiled surface – a gentle, rippled surface lets air pass freely, even when supporting a sleeping head.
- Cervi-shaped – supports the neck and spine in alignment, helping to maintain unobstructed breathing.
- Hypoallergenic – no adhesives or welding chemicals are used in making these pillows.
- Easily washable – washed and dried in one piece; the micromesh cover is permanent.
- Movement circulates air – any head movement pumps air from the aero-cavity through the channels around the head to help prevent suffocation.
Day by day seizure care
Seizure diaries
Children with epilepsy have a fantastic seizure diary filled with fun activities. The diary has space for recording seizures in a fun way – a vital help to doctors in diagnosing and managing epilepsy.
It is full of pictures and cartoons donated by over 50 famous children's illustrators including Lauren Child, Axel Scheffler and Aardman Animations. Nick Sharratt designed the lively front cover.
The teenage seizure diary, ‘All about me’, has been specifically designed and written for teenagers between the ages of 13 and 19, and helps them monitor their seizures and take control of their epilepsy.
Young EpilepsyDays out
The Cinema Exhibitors' Association card
A national card that can be used to verify that the holder is entitled to one free ticket for a person accompanying them to the cinema.
To apply for the card you will need to submit proof that you are in receipt of Disability Living Allowance or Attendance Allowance, or are a registered blind person. You will also need to supply a passport-sized photo with your application to appear on the card.
ceacard.co.ukISCAN
Integrated Service for Children with Additional Needs
A First Response Service is in operation during working hours, Monday to Friday, which offers practical advice to parents, carers and disabled young people; support to professionals working with children with disabilities; signposting to other services; and urgent response to support needs.
Who can be referred?
Children who have a disability and require two or more services in addition to universal service provision. These children will usually have significant and/or complex needs or will have a developmental delay that requires further investigation or continued care.
Referral to ISCAN can be made via a CAF (Common Assessment Framework) or an ISCAN referral form, which can be obtained by contacting the service.
The service aims to
- Put the child and family at the heart of a high quality, co-ordinated service, supported by a named Lead Professional or Key Worker.
- Provide support, early identification and intervention through holistic multi-agency working.
- Provide clear communication routes to families and professionals.
- Support families affected by a life-limiting illness or death of a disabled child.
Who is part of the ISCAN team?
- Speech and language therapy
- Portage home visiting
- Complex needs/school nurses
- Behaviour service
- Occupational therapists
- Physiotherapists
- Social workers
- Nursery nurses
- Autism assessment team
- Dieticians
- Clinical psychologist
- Paediatricians
- Audiology
Useful links
Organisations that can help
Epilepsy
- Epilepsy ActionIncluding education, medical needs at school and travel insurance.
- The National Society for EpilepsyEpilepsy Society
- Epilepsy Research UKepilepsyresearch.org.uk
- Epilepsy BereavedSUDEP Action
- Young EpilepsySeizure diaries for children and teenagers.
- Dravet Syndrome UKdravet.org.uk
- Matthew's FriendsKetogenic diet
- Muir Maxwell TrustEpilepsy bed alarms (for night seizures)
- The Daisy Garlandthedaisygarland.org.uk
- STARSSyncope and Reflex Anoxic Seizures
Support for families
- Family FundGrants for children with disabilities and special needs.
- Cerebracerebra.org.uk
- Disability Living Allowance (DLA)For children – GOV.UK
- Blue BadgeOfficial government site about getting blue badges which entitle you to use disabled parking spaces.
- David Lewisdavidlewis.org.uk
- CEA CardA free cinema ticket for a person accompanying the card holder.