Issue - items at meetings - Children with Complex Needs

29.1    Rachel Travers, Debbie Collins and Amanda Mortenson from Amaze and the Parent Carers' Council (PaCC) presented their report 'Talk Health' to HWOSC.

They explained that Amaze was a small charity in Brighton and Hove for parents of disabled children. The PaCC was a subgroup of Amaze especially for parent-carers. Amaze sees approximately 1,500 families and receives 4000 calls to its helpline per year. They understand that the numbers may be low in terms of population size but some of the children are very high cost in terms of the care and medical support that they receive, with high incident rates; therefore Amaze and PaCC believes that the children should be a priority group for the local authority and partners.

The 'Talk Health' report is the third annual report that the PaCC has produced; the other two are on the topics of education and therapies.  PaCC is still working on the recommendations from the two previous reports.

29.2    With regard to the current 'Talk Health' report, it was recognised that children with complex need may attend a wide range of different services but the parents chose to focus the report on four specific services, the Royal Alexandra Children's Hospital, Seaside Children's Centre, GP services and CAMHS.

29.3    Amanda Mortenson told the committee her own story as the parent of a child with complex needs. Ms Mortenson is Co-Chair of the PaCC, and her daughter has very complex needs. Ms Mortenson gave an overview of the range of planned and unplanned hospital visits that her daughter undergoes on a regular basis and gave some examples of things that could be introduced that would benefit their lives to a great extent. One example was to have a specialist paediatric epilepsy nurse, possibly through a Sussex wide service who could offer care at home rather than having to necessarily attend or stay in hospital.

29.4    Debbie Collins, Parents' Participation Worker for PaCC, summarised the report and the recommendations for HWOSC members. Ms Collins noted that Brighton and Hove was extremely lucky to have the Royal Sussex County Hospital on our doorstep.

One of the overriding recommendations was for 'parent's journey training' for health care professionals to understand what it was like to be a parent carer. All staff at Seaside View have already had the parent's journey training and it has made a huge difference to parents' experiences. Other recommendations that would make a significant difference to parents would be for medical professionals to routinely copy parents in to all correspondence as this does not often happen.

29.5    Ms Travers clarified that there were a great deal of positive findings as well as recommendations in the full report. Andrew Lansley, former Health Secretary, had recently commissioned a national piece of work, the Children and Young People’s Health Outcomes Forum. A large number of the national study's recommendations were mirrored in the local findings too.

29.6    Ms Travers asked whether it was possible to amend the recommendations in the cover report so that the HWOSC could agree to champion the recommendations in the Talk Health report, and ensure that Amaze got a response from the relevant bodies. Ms Travers also asked that HWOSC consider asking the Health and Wellbeing Board to consider the report.

29.7    Committee members thanked Ms Travers, Ms Mortenson and Ms Collins for their excellent report and for their presentation. Councillor Theobald, who was chairing the meeting, agreed to consider the recommendations as requested by Ms Travers.  This was endorsed by other HWOSC members.

29.8    Councillor Theobald said that it was extremely moving to hear what it was like for parents of children with complex needs.

29.9    Councillor Marsh commented on the particular role of GPs in 'gatekeeping' access to further services. Ms Travers responded that it was crucial to have a good relationship between families and GPs, particularly if there was to be a reduction in people presenting to A&E. If families did not feel that they had a positive relationship with their GP, they would be more likely to attend A&E for assistance instead.

29.10 Councillor Robins asked for information on the number of children in Brighton and Hove with epilepsy and how many would be needed for a specialist paediatric epilepsy nurse to be appointed? Ms Mortenson said that there were approximately 160 children with epilepsy in the city. If there were 240 or more then it would be more likely that a specialist paediatric epilepsy nurse could be considered.  Ms Mortenson understood that investigations were being made into appointing a Sussex-wide specialist nurse.

29.11  Alison Nuttall, Strategic Commissioner, Children, Youth and Families, commented that Sussex Together, a regional NHS group, was considering appointing a specialist paediatric epilepsy nurse but the issue was about creating a sustainable service. For example it would not be possible to have just one nurse as this would not provide a consistent service so it would be necessary to appoint at least two nurses. Ms Nuttall confirmed that Sussex Together supported the appointment in principle.

Ms Nuttall also invited all HWOSC members to come and visit Seaside View if they had not been before; if they wished to take up the offer, they should contact Ms Nuttall on alison.nuttall@brighton-hove.gov.ukor telephone (29)3736.

29.12  Councillor Sykes asked whether the quote on page 5 of the Talk Health report was representative of a typical service user in the number of appointments that the child had had, or whether there had been any duplication. Ms Mortenson said that the quote had come from her own experiences, and in this situation each appointment had been necessary but that this was not always the case. Parents often found that they had to repeat their child’s story to each different health care provider, which could be a painful and exhausting process.

29.13    Councillor Bowden said that the report and recommendations should be shared with the Royal College of General Practitioners to highlight the training needs. The issue of copying parents in to correspondence would be so simple and make such a difference to families.

29.14    Mr Watkins, representing the LINk, said that in his view, it would be really helpful to have information about hospital waiting times. The ‘Talk Health’ report was on the LINk agenda for next week. Statutorily LINk had not been able to deal with children’s health issues but LINk is becoming Healthwatch will be able to consider children’s health issues, which is why they are able to consider the report now. Mr Watkins suggested that a PaCC representative might like to become part of Healthwatch. He also suggested that a PaCC representative join the Patient Participation Groups (PPG) being established in local GP surgeries, although he understood that PaCC members had very busy lives and might not be able to commit to each meeting. Mr Watkins said that he had suggested that the PPG sit on Healthwatch.

29.15  Ms Travers said that Amaze had been involved with Healthwatch and the Clinical Commissioning Group (CCG) consultation. They had concerns that the CCG was only going to listen to the voice of PPGs; not everyone was able to attend PPG meetings and this would be especially difficult in they were caring for a disabled child. Ms Travers said investment needed to be made in supporting city-wide organisations to represent the views of under represented groups.

29.16Councillor Cox said that he was keen to support the recommendations for        increased community support. There was a need to reduce A&E visits in order to free up resources for community support services; this would require a change in people’s behaviour.

29.17C. ouncillor Cox said that he was concerned that the provision of a specialist paediatric epilepsy nurse might raise parents’ expectations about the service that they could expect; there was likely to be a high threshold to be able to access the service in order to address this.

Ms Mortenson said that Sussex was the one of the few areaa in the country that did not have a dedicated paediatric epilepsy nurse.

29.18Councillor Wealls said that CAMHS had been raised as a problematic area; this mirrored information that he had received when he had been a member of the Children and Young People’s Overview and Scrutiny Committee (CYPOSC).

During his time on CYPOSC, Councillor Wealls said that a satisfaction survey had been commissioned for new CAMHS users; could there be an update on this? The Head of Scrutiny said that this was due to come back to the next HWOSC.

29.19Mr Soud for the Youth Council asked whether there was anything that the Youth Council could do to help raise awareness of the report or of children with complex needs?

Ms Travers thanked Mr Soud for his offer and said that she would contact the Youth Council separately to discuss his suggestion.

29.20Councillor Wealls asked whether it was more useful for HWOSC to pick particular recommendations from the Talk Health report and champion those. Councillor Robins said his view was that the Talk Health report was a wishlist from PaCC, and that it was not for HWOSC to pick and choose particular recommendations.

29.21Councillor Marsh said that she would like the Talk Health report to be tabled not only at the Health and Wellbeing Board but also at the CCG, PCT etc. She would like the recommendation to be reworded to say that the report should be sent “to all commissioning bodies”. This was agreed.

29.22RESOLVED –

(a)     the HWOSC champion the Talk Health report in order to seek responses from the relevant bodies to all of the recommendations. HWOSC agreed to write a letter of support that would be sent to commissioners, and

and

(b) that HWOSC table the report at all commissioning bodies.