Welcome to Jamie Postendorfen, Chair of the Just Say Parents’ Group
Minutes:
The Chair welcomed Jamie Postendorfen from the Just Say Forum to the meeting.
Jamie was the first resident invited to address the Committees in Common and was asked to outline her story and experiences as a local resident who used services from all those represented at the meeting.
Jamie outlined her background as a fostered / adopted child and her experiences as a carer, initially supporting her mother and father from a very young age and now caring for her 19-year-old son who had severe learning disabilities and a partner who was awaiting a diagnosis for autism. She explained the difficulties she had experienced in securing the support that her son needed and deserved and referred to the particular hurdles she was currently facing as her son transitioned into adulthood.
Jamie volunteered in the capacity of Chair to the Just Say Forum, an information group made up of carers from Barking & Dagenham which worked closely with the local authority and formed part of a national network of carers and parents. The Forum received a small amount of funding from the Department of Education which they use to provide parents and carers with appropriate training, hold open meetings to share information, problems and life experiences, which in turn they feed back to the local authority to get help and assistance. That said even with that support, life can be very difficult and challenging for individual carers/parents, as well she knew from her own experiences. She had a lot of knowledge about 0-16 but when it came to managing the transition into adulthood, she was unprepared for, as she described, the ‘bombshell’ that it is. Although she had done a considerable amount of research she was shocked as to how much a carer/parent needs to know because in her experience the local authority who have a duty to help quite often don’t know themselves.
The Chair encouraged all those in attendance who had not already meet with the Forum to do so, given their knowledge and experiences. She referenced a recent joint session where they looked at why the services collectively were getting the issue of transition so wrong, especially as in most cases this was not about children who were not known to authorities. It certainly should not be left to carers/parents to have to do their own research. One of the challenges, and why the Committees in Common had decided to invite the likes of Jamie to address the meeting was so that everybody could think about whether they offered the right services and what each provides to support residents, highlighting as an example the case outlined by Jamie regarding her non-verbal son, who has rights himself.
Opening up to discussion, the Cabinet Member for Educational Attainment and School Improvement asked Jamie of her experience regarding her son’s education, whether there was enough preparation and support for him, what the challenges were and, going forward, what could be improved. Jamie responded that she was not made aware that transition should have started in year 9 and, in her son’s case, it did not start until year 13. She had also had to undertake a lot of her own research and despite raising issues through his EHCP review, her son should have had the likes of careers and housing officer support in place much earlier than it was. She felt that, other than education, no other services had been involved in the review process and gave the example of having to suggest herself an adult speech and language referral due to her son being non-verbal. Her son was currently at Trinity and despite the deadline of the end of the month to put in place an educational setting for him, she was still chasing to get a plan in place. Whilst he had severe learning difficulties and would struggle with everyday learning such as Maths and English, that should not preclude him. The Cabinet Member for Childrens Social Care and Disabilities acknowledged the points made by Jamie, recognising that the earlier the transition process started the better the chance of support being in place when it was needed.
In response to a question on the one thing all the bodies represented at the meeting could do to improve things, Jamie suggested that better communication for any parent entering into world of SEND would help greatly.
Fiona Russell, Director of Care, Community and Health Integration said that better support around pre-diagnosis was something that the Council was currently looking at. Turning to Jamie’s carer role for her father with Alzheimer’s she asked her to expand on the challenges this presented and what was it that the Council could have done better to support her. She responded that it was hard watching the deterioration of a loved one before you, especially their mental capacity, seeing in her father’s case he was phenomenal with maths and spoke four languages. In the later stages he did not recognise any of the family. That led to her mother having a mental breakdown and suffering long term depression and why Jamie become a carer at such a young age. Generally, there was not a lot of support for the family and why Jamie had to do most of the care.
Jenny Hadgraft made reference to a report which Healthwatch were about to publish about pathways to EHCP. Whist the majority of parents and carers had good support, she echoed Jamie’s point about some feeling isolated and requiring more support and guidance.
Dr Sharma paid tribute to what Jamie has done. Seeing she had been a carer since the age of eight, she asked her what three things she would want to see in place that could really help and support young carers in Barking and Dagenham. Jamie responded that training for teachers to pick up the signal behaviour signs of problems in early years was vital, as was information for parents to be more aware of the unduly influence they might have on their children as young carers. Also maybe putting in place a system for children to talk to someone if they feel they needed to.
Andrea St. Croix, NHS Independent Complaints Advocate for B&D, said it was so important to have a holistic approach between the NHS and social care, seeing the number of people who were falling through the gaps. Melanie Williams, NELFT, stated that whilst the focus is on the growing younger population, we are seeing a significant increase in dementia diagnosis in the Borough’s older population, and there was clearly a need for better support for carers in this group, otherwise we end up with significantly higher support costs given the complexity of their health needs, something this Board and Committees in Common should not lose sight of.
The Chair thanked Jamie for telling her story, the reason behind which was for this Board and Committees in Common to reflect in our own services as to whether actually do we think enough about the families of young people, particularly as to the sorts of issues highlighted this evening.