Bristol Parent Carers hold meetings with parent carers and staff from NHS Bristol Trust, because they have asked us to help them improve the health services for disabled children and parent carers. If you would like to participate in any of the opportunities below - watch our calendar or email us.
Does your SEND child (0-25 yrs) have problems with Oral Health or Accessing Dental Services?
Bristol Parent Carers worked with professionals from Community and Hospital Dental Services and the University of Bristol, to discover what the issues are, what’s on offer, and what could be improved. We ran a survey and a participation workshop to gather parents’ views.
We discovered an array of things that can help you:-
Click here for a range of self help strategies, websites and resource. This document also refers to some useful booklets and leaflets – they can be downloaded here:-
- BSPD Advice for parents of children with autism
- Looking after teeth for children with extra needs
- Dental care and autism
Dental services available in Bristol to help families with SEND children
, how to access them, and what each one does.
We were very interested to discover that there is a Primary Care Dental Service especially for children with special needs. So if you are struggling to get your child to the dentist, or they are struggling once you get them there, please click here to read more about how this service can help. UPDATE: The Primary Care Dental Service now has it's own website here.
We also worked with South Bristol Community Hospital to make your child’s visit to the dentists there a better one. Please click here to discover what you should do before a visit.
We undertook all of this work with a local group of health practitioners and researchers - Bristol Network for Equality in Early years health and wellbeing (BoNEE). Click here to read more about what they do.
From our survey and participation workshop, they captured the issues you face with your child’s oral/dental health, the barriers you/your child face accessing dental services, and the type of oral health services you would like to see in future. They are looking into how they can respond to these needs – and we will publicise any changes here, as they arise.
Issue: You struggle to know what therapies are on offer that would help your child, and how to access them
Result: A new Integrated Therapy Service is being developed for Bristol and Sth.Glos
Bristol Parent Carers ran an event with Therapists from Community Children's Health, Barnardos and parent carers to hear your views on Physio, OT and SALT services and to help design improved therapy services. You shared your experiences, and Dawn Ravenhill, Lead Physiotherapist, gave a presentation on their reasons for designing a new Integrated Therapy Service.
The idea is to bring the work of physiotherapists, occupational therapists, and speech and language therapists closer together, and to view your child's needs holistically:-
- To start with, the referral process is being integrated - this started on April 5th 2017. So now, once a week, a team of a Physio, an OT and a SALT meet to triage all new referrals. This is currently taking place at Osprey House, Whitchurch - later the Integrated Therapy Service office will be in Fulford House, Hartcliffe.
- This triage team will decide either to i) pass a child onto the relevant professional team for an assessment, ii) refer them for a combined multi-professional assessment because they have a combination of needs, or iii) write to say they're not eligible/don't fit the criteria.
- Then the notes go back to your locality where the assessment will take place. In future you will get a choice of where your child will see their therapist within your locality - but this choice has not started yet.
- The new combined multi-professional assessments have started too, and will take place in your locality.
- You will be able to self-refer.
Bristol Parent Carers asked the Integrated Therapy Service to prepare all the information you need - a website address, new webpage information, eligibility criteria, an online referral form, a contact phone number, etc. This should be available in the next month - I will inform you as soon as it's ready.
As a result of your comments at our Therapy Event, Community Children's Health has produced this You Said, We Did so far document. They have also produced a document summarising all your concerns in priority order. BPC reps are continuing to meet regularly with Health to work on an Action Plan to address the issues raised by you - I will keep you informed of progress.
Issue: How to get help if your child has ASD traits but has no diagnosis
Result: New "ASD Clinical Care Pathway" and "SCIN Journey"
Health and Council staff have recognised that although there are services for children/young people with Autistic Spectrum Disorders (ASD), it is difficult to get support without a diagnosis. So they now want to provide help to address these children's needs, whether there is a diagnosis (of ASD or something else) or not. BPC reps have been working with them on this wider group of children/young people with "Social Communication and Interaction Needs (SCIN)" and on how to help them. So far:-
- Community paediatricians have developed a new Clinical Autism Spectrum Care Pathway which will ensure that a child's social, communication, and interaction needs are identified in a uniform way across Bristol (and Sth.Glos). It also describes how assessments will take place, diagnoses will be made, and interventions/support will be provided (with and without a diagnosis).
- Health, Council staff, and parent carer reps have been working together to ensure this Clinical pathway is surrounded by a network of other early years, education, care, short breaks and other types of support. The description of this wider network of support for children/young people with Social Communication and Interaction Needs is being finalised. Come along to our Annual Participation Event on 13th June to see its launch!
Issue: You want to understand what your journey will be like to access services for your child's disability/special need
Result: Community Children's Health and Barnardos have worked with parent carers to produce a series of family stories
Click here: To discover all about it
Bristol Parent Carers has, over time, found parent carers to work with Barnardos on this project. So now there are family stories about accessing services for ADHD, ASD, cerebral palsy, developmental co-ordination difficulties, Down Syndrome, global developmental delay, and learning difficulties - see link above.
Right now they are doing further work on the Cerebral Palsy clinical pathway, and are looking for parent carers to work with paediatricians to improve referral, diagnosis and treatment processes. It only involves a meeting every 2 months until November. If any of you have a child/young person (0-18) with cerebral palsy and want to get involved - please contact us urgently.
Issue: Community Children's Health Services were recommissioned - so who is running them now?
Result: The contract was won by Sirona Care & Health (CIC) working with Bristol Community Health (CIC) and Avon and Wiltshire Mental Health Partnership NHS Trust. Click here: To discover all about it
The contract to run Bristol and Sth.Glos' community children's health services (CCHS) was won by Sirona, who work with Bristol Community Health (who used to just do adult services) and Avon and Wiltshire Mental Health Partnership to deliver the contract and new specifications/requirements. They are managing the work as follows:-
- Sirona Care & Health manages the Community Paediatrician Service across Bristol and Sth.Glos, and community/school nursing services for Sth Glos.
- Bristol Community Health manages the Community Therapy Services (physio, OT, SALT) across Bristol and Sth.Glos, and community/school nursing services for Bristol.
- AWP provides child and adolescent mental health services (CAMHS) across Bristol and South Gloucestershire.
- Barnardos has been contracted to work alongside the CCHS to ensure patient engagement and participation takes place.
For any materials, click on our Downloadable Resources page.
To get involved in any of these activities, and share your skills with us, click on our Contact Us page.