our reports
So far PaCC has been responsible for influential city-wide consultations with parent carers on various matters.
how we've helped
Our consultations with parent carers have been on therapy provision, the future of special education needs, the health care provided by hospital & community services, mental health & well-being and home to school transport.
Their findings have led to more money being targeted into direct therapy provision and to parental involvement in the new SEN partnership board which is working on the city’s SEN plan for the next three years.
Significant changes have been made at the Children’s Hospital regarding car parking and the introduction of the new Healthcare Passport for children with additional needs.
Read PaCC’s reports, consultations and notes from follow up meetings below. Some reports contain annexes, to receive them please contact us via email.
education, health & social care
Working with the local Clinical Commissioning Group (CCG) and Brighton & Hove City Council (BHCC).
PaCC and Amaze are one of Brighton & Hove charities directly contracted by the local CCG and by BHCC to engage parent carers of children with additional needs and disabilities in talking about issues, to gather their views and experiences of local education, health and social care services, and to hear suggestions on what might need to be improved.
One the ways PaCC engages parent carers is through consultations which are organised around specific issues. You can read PaCC’s reports and notes from follow up meetings below, for information on the background to any of the reports please email [email protected] or call 01273 234862.
April 2024 – PaCC on Transition to Adulthood, a working document to be shared with Education, Health and Care Professionals, with the purpose of PaCC updating the document to share information around processes and provision with parent carers. Read Report
November 2023 – Emotionally-Based School Avoidance (EBSA) – Drawing upon parent carer experiences to create better support for families during their EBSA journey. Read Report
June 2023 – Brighton and Hove Adult Autism Strategy Development – a consultation with parent carers of children and young people with special educational needs and disabilities (SEND) aged 0-25, and with SEND young people aged 14-25. It looked at how to improve lives of autistic adults without a learning disability and address current gaps. Read Report
November 2022 – Brighton & Hove Neurodevelopmental (ND) Pathway –
Focusing on Autism, ADHD and Tics and Tourettes. A report generated by three different consultations and a PaCC Connect. Read Report
March 2022 – Parent carers and ‘disadvantage’ – a report from a PaCC focus group in response to Brighton & Hove City Council disadvantaged strategy consultation. Read Report
September 2020 – SEND Strategy and BAME families – This consultation asks Black, Asian, Minority Ethnic (BAME) SEND families for their views and suggestions around Brighton and Hove 5 years (2020-2025) SEND Strategy. The report is complementing individual feedback from PaCC members and PaCC Reps which was sent directly to the Local Authority. PaCC Chair and Vice-Chair are now working with the SEND Partnership Board on collating all the different feedbacks and put the SEND Strategy into action.
Read Report
December 2019 – Multiple Long Term Conditions – This consultation looks at how services for parent carers and young people (YP) who have Multiple Long Term Conditions (MLTC) can be improved.
Read Report
June 2019 – Urgent Care Services – Parent Carers Experiences and Suggestions
Read Report
December 2018 – Looking at the perceived gaps in provision in SEND services.
Read report
June 2018 – Exploring the needs of parent carers who are also looking after a family member with dementia.
Read Report
December 2017 – Read about parent carers’ experience of having their needs assessed as Carers.
Read Report
April 2017 – Parent carers talk about their experience of food poverty. This report also looks at parent carers’ and their families’ ideas for healthy living, including taking part in activities.
Read Report
March 2016 – Parent carers talk about how cancer services could be improved across Brighton and Hove.
Read Report
December 2015 – In 2012 Amaze and PaCC carried out a consultation on provision of health care, available in Brighton and Hove, for children with disabilities and additional needs. The full report, Talk Health, is included on this page. With this new consultation we wanted to find out about parent carers, their children and their families’ experience of being discharged from RACH, specifically on follow up and support received once they were sent home.
Read Report
April 2015 – Parent carers give their views on how they would like Health Checks to be provided across the city.
Read Report
September 2014 – Parent carers’ view on the implications and effects of providing health care services with more use of informatics.
Read Report
April 2014 – Suggestions and recommendations from the Mental Health and Wellbeing report have been collated and used to draw a city wide strategy and also taken forward by PaCC Parent Reps attending CAMHS Strategic Board.
Read Report
March 2013 – Following the success of the Talk Health report, professionals from each of the local services were invited along to update parents on the changes they had made in each of their services.
Read Report
January 2024 – PaCC Response: Brighton & Hove’s City Council’s proposal to close St Bartholomew’s C of E Primary School and St Peter’s Community School at the end of this academic year (August 2024). Read Report
October 2023 – Early Years Report – Early Years in Brighton & Hove; collating and evaluating information from parent carers about their experiences . Read Report
December 2022 – Presenting information to those on the DSR (Dynamic Support Register). Report from PaCC focus group on DSR. Read Report
September 2022 – PaCC Home to School Transport Progress Report for Children, Young People, Education & Skills Committee Meeting 29th September 2022. A report completed by Pippa Hodge, PaCC Rep for HTST, on the work that has been done, so far around home to school transport. Read Report
November 2021 – Emotional Wellbeing and Mental Health Support for Children and Young People with Neurodevelopmental conditions – a report from an online consultation workshop for parents and carers of neurodiverse children and young people, facilitated by PaCC. Read Report
May 2020 – COVID Survey Report – This survey focus on how lockdown is affecting CYPs’ learning and the support families need around home schooling and in staying healthy and well.
Read Report
October 2019 – Priorities within the Learning Disability Community – This consultation has been requested by the Learning Disability Partnership Board with the aim of looking at the priority needs of people with Learning Disabilities, both at school and in the adult world.
Read Report
May 2019 – Report on Mental Health Services focusing on the experiences of families with children and young people with SEND accessing Mental Health and Wellbeing services in Brighton and Hove.
Read Report
September 2018 – Parent carers views on the proposed GP online consultation service.
Read report
March 2018 – Exploring the needs of travellers who are also parent carers.
Read Report
August 2017 – Read about parent carers’ experience of using pharmacies in relation to receiving general advice around health care and also around prescription and management of medicines.
Read Report
January 2017 – Parents carers talk about their experience of making complaints and providing feedback and how the system could be improved.
Read Report
May 2016 – PaCC partners and Amaze expertise on what sort of services and activities they provide which directly or indirectly improve parent carers’ mental health and wellbeing.
Read Report
March 2016 – Parent carers from BAME communities talk about their experience of health and social care in Brighton and Hove.
Read Report
July 2015 – Parent carers contribute to the debate on how Primary Care can best support them. Transforming Primary Care One of the new services will be that GPs are encouraged to work more closely with other GPs through creation of ‘clusters’ where you people can access and receive support.
Read Report
January 2015 – Parent carers’ experiences of GP surgeries in the city. Parent Carers and GP surgeries in Brighton & Hove.
Read Report
June 2014 – Parent carers have their say on integrated care’s aim of a more holistic approach to people’s care needs by placing people at the centre of their own care plan.
Read Report
September 2013 – A summary of what parent carers think about pharmacists, GPs, Brighton Station Health Centre, out of hours GPs, NHS 111, emergency dental service, A&E and children’s A&E.
Read Report
March 2012 – Read parent carers’ experiences of local health care services (Seaside View, the Children’s Hospital, GPs in Brighton & Hove and CAMHS) and their recommendations for change to make the services more responsive to their needs.
Read Report
education
Working with organisations such as Ofsted and the Local Authority to improve education policies and provision for parent carers and their children.
July 2016 – Amaze & PaCC’s response to Ofsted and CQC’s report following a joint inspection of local implementation of SEND reform.
Read Report
February 2015 – PaCC’s members respond to Brighton & Hove City Council revised Home to School Transport policy.
Read Report
January 2011 – The first follow up event to the publication of a PaCC report saw head teachers and professionals from the local authority come back to update parents on the changes implemented in SEN since the report was written.
Read Follow Up Notes
July 2010 – To see what parents said back then about SEN provision and some of the changes they would like to see.
Read Report
members survey
PaCC's Membership survey helps us to understand the issues facing our members. We use the findings from the survey to help us plan our strategy for the year.
2017/2018 – Parent & Carers Council Membership Survey
Read Report
2015 – Parent & Carers Council Membership Survey
Read Report
other consultations
PaCC occasionally take part in consultations that come outside of the usual areas that concern parent carers - for example the Fairness Commission that was set up to help make Brighton & Hove a fairer place to live and work.
July 2016 – Find out about the commission’s recommendations to make our city a fairer and more equal place to live and work.
Read Report
February 2016 – A group of parent carers talk about what ‘fairness’ means to them and their children.
Read Submission
transition
The Learning Disability Partnership Board (LDPB) is a diverse group of people and organisations representing service users and providers, specifically around the needs of people with learning difficulties in Brighton & Hove.
Parent reps from PaCC and a representative from Amaze attend the Learning Disability Partnership Board quarterly meetings. Other organisations attendign the meeting are the Carers Centre for Brighton & Hove and Speak Out.
The LDPB’s primary aim is to improve the lives of adults with learning difficulties in our community in accordance with the Valuing People priorities, but also to take on board issues around transition from Children’s Services to Adult’s.
Topics for consultation are agreed during the meetings and either suggested by the Local Authority or by the organisations attending the meetings. Findings from consultation recommendations are collated into reports and used to shape provision of services across the city.
the reports
April 2023 – Read PaCC report about Activities and services for young people aged 14-25 with Learning Disabilities (LD) – the views of Parent-Carers Read Report
April 2018 – Read about parent carers on Employment and Volunteering for young people with disabilities.
Read Report
January 2018 – Brighton & Hove City Council Learning Disability Accommodation Strategy 2018-2022 consultation with parent carers.
Read Report
October 2017 – Parent carers views on support with Benefits and Universal Credit.
Read Report
April 2017 – Parent carers views on Access to Sport and Physical Activity.
Read Report
January 2017 – Parent carers on moving from one type of accommodation to another.
Read Report
July 2016 – Parent carers views on the day activities available for the young people they care for.
Read Report
October 2014 – Parent carers views on housing for the young people they care for.
Read Report