Everybody has their own story to share about how their family has been affected by childhood acquired brain injury.
We would like to thank all those people who have already shared their experience and feedback.
I wanted to drop both of you an email to let you know how thankful I am for the support you have both given and instigated from others on my behalf. This is the time of night when I get to catch up after X’s bedtime.
So much has happened since Maria contacted me in February and put me in touch with you X. Via the wonderful Parent Carers I was referred to the St Helens Council’s OT assessment Team. X visited and assessed I need garden gates and upstairs window restrictions fitted to make the home safe for X. He was lovely and great with X. He is applying for the grant and arranging for the work to be done. Amazing.
I was also referred to an adviser at the Carers Centre who helped and completed the DLA application for us which I am waiting to hear about.
After attending the Parent/Carers Network meeting where IASS spoke, I then had support from them completing the EHCP application. Plus I got to speak to members of the LA’s SEND Team which answered some of my questions. Again, I am awaiting the outcome but we couldn’t have done any more for X in this respect and his School have been fabulous too.
There has been other support and the Open Day at the Town Hall was so informative on various organisations X. The HIT, IASS, LA SEND Team to name just three were great to speak to.
The CBIT training sessions are also so informative on ABI and have helped me accept X’s condition. I can view the live sessions at the moment but I need to get a lap top or tablet that supports me viewing the e-learning sessions, so I look forward to accessing them soon.
Due to you both, I have had support at a very stressful time for me as a single parent. I wouldn’t have had the inclination, energy or confidence to apply for DLA and would have struggled over the EHCP process. I honestly can’t thank you both enough for leading the support services for me. I have a friend with a poorly child in another area (sadly leukaemia for 5 years but wonderfully her little girl is doing okay health wise now). The services there are not a patch on St Helens even though it’s a far bigger Borough.
You have both been fabulous and your colleagues too. I have been so blessed to have had your support which I did not ask for but received with thanks.
I will keep you both updated in terms of the outcomes for EHCP and DLA and will hopefully see you soon.
“Jennifer honestly that was the best party last night, well done to you and Jill. The best 2 hours of our year, up there with Disney on Ice in Oct and flying kite on Bute in May as my top 3 memories this year. Sophia can’t remember the other 2 so I hope this memory sticks! xx”
“Christmas wonderland is amazing, the girls thoroughly enjoyed the experience. The elves were fantastic. Thank you so much to Lauren and Jacqueline at CBIT.”
“Brilliant event, location is great and the activities on were 1st class. Everyone was so helpful and friendly.”
“This is an amazing experience for the younger children.”
“Excellent venue, good activities.”
“We enjoyed the event, although difficult for a wheelchair iser as needed to go on gravel track and tractor access was difficult.”
“Kids loved it, would do it again.”
“Brilliant day out. Kids had a ball.”
“The whole day has been wonderful. Truly magical place.”
“Loved it! Very well done.”
“Absolutely fantastic. Adults and children had an amazing time.”
I just wanted to drop you a note to say a big thank to you for your help and effort regarding the presentation of our son.
You have helped us as a family immensely in your function as representative of the Child Brain Injury Trust. You were able to present and explain the difficulties following acquired brain injury in every-day functioning exceedingly well to the various groups of professionals our family is involved with. I have been present at your talk to Social Work and community support representatives and I was impressed. I admired your professional presentation which was perfectly aimed at the recipients including a question and answer session. You presented and explained the sequela of acquired brain injury with special consideration to our son’s presentation who is affected by marked impairment of social and verbal communication difficulties. You offered us as a family a chance to contribute and ‘personalise’ your talk with the experiences our son has made in the school environment, at home and in respite settings. This in turn helped the professionals understand the difficulties our son faces far better than before.
In addition, you have supported our daughter in understanding better what brain injury means to her interaction with her brother.
You represent a very much needed professional support and voice for affected families in interactions with other professional agencies including the NHS but in addition, you have offered kind and insightful interaction with us, a family in need of support. I am very grateful for all the work you have offered to us as a family. I am delighted that you are able to work for families like ours for the Child Brain Injury Trust.
On 2nd May 2017, at the age of 15 I had a stroke. Initially the help and support I received from the medical professions was extremely slow.
When we got home from hospital, my mum got in touch with the local Stroke Association, unfortunately they were unable to offer any other help than support, as I was under 16.
My mum then joined a Facebook group page called ‘My child had a stroke’, where she found out about Anna Panton, Childhood Stroke Project Manager for the Stroke Association, who then put us in touch with Maria Wilson, Child Brain Injury Trust, Child and Family Support Coordinator.
Maria has been a fantastic support to me, also my family, school and medical professionals. I would like to thank them, Dr Curran my neurologist and my family for their continued support.
I’m raving about you to everyone!!
So much positive feedback from staff, they’re still talking about it!
We’re doing initial ACE training this term but will be working on this all year so may be in touch!
Thanks again for the session, it was fab!
Just saw the SENCO teacher at my children’s school who attended the CBIT training yesterday, Understanding Childhood ABI by Louise Wilkinson.
She said it was brilliant and such an eye-opener. She will be sharing her new-found knowledge with the rest of the staff to raise awareness – yay!
“Thank you to CBIT for the Christmas party. The boys had a great time and asked before we left if they could come back next year.”
“Really felt we’d been left high and dry and then the Child Brain Injury Trust stepped in and were brilliant.”
“To be honest, I’d be lost without them. Jacqueline has been with us, coming to school meetings with us, providing money for holidays or family days out, helping us write letters, just being there when she’s been needed. She’s been amazing.”
“There have been times I felt alone and I remember crying my eyes out down the phone to the Child Brain Injury Trust. Jacqueline is our family coordinator and that’s exactly what she does. She helps coordinate everything. I don’t think I could’ve got through this if it hadn’t been for her support.”
“Jennifer honestly that was the best party last night. well done to you and Jill. the best 2 hours of our year. up there with Disney on Ice in Oct and flying kite on Bute in May as my top 3 memories this year. X can’t remember the other 2 so I hope this memory sticks! Xx”
“this was a good night xxx”
“ Was fab girls loved it thanks again for inviting us along hope u have a lovely Christmas 🎄 xx”
“Thank you for a great night. X and I enjoyed ourselves and seeing everyone. Merry Christmas to you all when it comes x”
“Thanks so much, we had a great time. And yes big thanks to the lovely helpers from Digby Brown too x”
“Thanks guys – The X’s has a lovely evening – thanks to Digby Brown too 🎄🎅❤️”
I have witnessed the value that CBIT brings to children and their families, after injury, on a weekly basis since the arrival of CBIT at our centre.
The CBIT family support workers are highly valued by clinicians and families. CBIT workers are key members of the team caring for children with after head injury.
CBIT is uniquely placed to offer continuity of support; from intensive care to the children’s wards, discharge and hopefully return to school. Head injury brings a huge amount of uncertainty which is extremely difficult for families to navigate but is made much more tolerable by support from CBIT.
Thank YOU for a really informative and thought-provoking session. It was really helpful for us all – not just in terms of supporting Amy, but also in general with managing and supporting students with similar (or unidentified) issues.
Good, nice to have things in common.
Really Appreciated the tour, thank you for organising.
I love coming to these days out.
Thanks so much for a lovely day out.
If was our first time here and we really enjoyed it.
Very detailed tour.
It was great to see others we have met previously.
We had a great time, thank you so much.
I just wanted to say that the course was fantastic and Louise was an amazing trainer, I learnt such a lot and completed the online evaluation.
I thoroughly enjoyed this course. It was fascinating and easy to follow, giving a complex introduction into the development of the brain and the absolute necessity to protect young children from both toxic stress and accidental brain injuries. A must for anyone working with or caring for children in the Early Years.
I have to say that I am so glad that I decided to do this course. I feel I have learned so much from it and it has really opened my eyes as to how easily an ABI can happen!
At the moment there is no general awareness of ABI included in Early Years training which I now feel is vital for anyone who works closely with children on a daily basis.
The Child Brain Injury Trust has been working closely with the paediatric neurosurgical service at the Royal Hospital for Children in Glasgow. They provide extensive support for children who have suffered an acquired brain injury and their families, after discharge from hospital. These patients often have complex needs, as they recover from their acute illness and return home to resume their normal activities and CBIT provides invaluable help as they make this transition. Their close integration with our service and external agencies (schools, social services etc) has greatly enhanced our outpatient care and we are very grateful for their input.
It was great to meet other parents, it is always good to relate to others in a similar situation
An exceptionally worthwhile day which I would recommend to anyone working in education.
This course gave me hope and I returned to school with excitement. I am in the process of educating staff , it is not easy as many have fixed idea’s. I have also been able to give hope to the family I am supporting.