Working with organisations that provide health servicesInformation on working with NHS, ICBs and healthcare providers, including Commissioning, overseeing quality and developing relationships. The NHS, integrated care boards (ICB)s and healthcare providers have a legal duty under the NHS Act 2006 (amended by the NHS Health and Care Act 2022) to “make arrangements to secure that people are appropriately involved” in planning proposals and decision regarding NHS services. “Involved” covers a range of activities from listening, engagement, consultation, and co-production. Find out more in Working in partnership with people and communities statutory guidance for ICBs. The diagram below shows the public participation responsibilities for each local NHS organisation in the ICS. The diagram shows the public participation responsibilities for each local NHS organisation in the ICS. Getting involved There are lots of different ways that parent forums can get involved in improving health services. It is usually best to choose a service that is most important to the forum steering group and forum members. The main areas are: Commissioning Working with children’s health commissioners on developing or improving integrated health and care services. Working with commissioners at an Integrated Care Board (ICB) level on strategic commissioning – for example specialist community dental services used by children and young people with SEND. Working with commissioners in large Provider Collaboratives to design and develop integrated services and pathways for children and young people with SEND, for example in mental health services. To find out more about commissioning, see the page designing and reviewing services. Monitoring/overseeing quality Providing evidence to health oversight and scrutiny committees, boards, task and finish groups and joint boards on parents’ experiences of using health services. Working with ICBs, and in future, SEND partnership boards and statutory local SEND and provision partnerships to ensure that ICBs are discharging their SEND duties. Developing relationships Developing relationships are key if parent carer forums want to influence and co-produce and improve health services for children and young people with SEND. Here’s a checklist of people you may want to introduce yourselves to: Designated Clinical Officers at your ICB. Lead (elected) councillor for children and young people. Lead (elected) councillor for health and social care. Chair and members of your Health and Well-being board. Director of ‘place’. Your local Healthwatch. Chair and members of your local health oversight and scrutiny committee. Children’s health commissioners. Executive ICB leads for SEND, children and young people, learning disability and autism, Down Syndrome and mental health. Examples of parent carer forums co-producing and influencing health services Three forums in the South West England teamed up to survey parent carers to evidence to the ICB the importance of needs-led autism assessments for children after a provider narrowed children’s access to autism assessments to reduce waiting lists. The evidence was key in helping to reverse the decision. Forums in Essex collaborated with NHS services and the NHS Eastern Region to create a toolkit for health professionals to improve health contributions to Education Health and Care Plans. Read more about this here. West Sussex Parent Carer Forum co-produced this video with the NHS to share the experiences parents of autistic and learning disabled children at risk of admission to mental health hospital. Rotherham Parent Carers Forum secured monthly meetings with their local Children and Adolescent Mental Health service (CAMHS) and neurodevelopment pathway leads, to provide lived experience to shape services and practice. Co-producing ‘affirming’ diagnosis support pack for families Bedford, Bedfordshire, and Luton parent carer forums worked with local NHS trusts to create a pack to support families before and after diagnosis with conditions like autism and ADHD. The accessible pack included information on sleep, medication, sensory processing, social communication support and videos and animations. The pack used neurodiversity affirming language to describe the condition favoured by families instead of deficit language. Watch a video about their co-production journeyView the Diagnosis Support Pack Ideas for co-production and collaboration with health services Contact the Health and Wellbeing Board and offer to co-produce a chapter on children and young people with SEND for the local JSNA. Work with the local authority and local health services to co-produce processes and eligibility criteria for the dynamic support register. Work with the ICB and local health providers to co-produce health information for the local offer website. Forums in the same ICB might want to join up to write to the ICB SEND lead to: Introduce the importance and role of parent carer forums. Ask how local forums will be involved in helping the ICB develop its forward plans and ICP strategies. Suggest a meeting to discuss how you can support the ICB to co-produce with parent carers. Suggest any areas forums in the ICB want to get involved in to drive improvements in local health services. These are some of the thing’s forums may want to understand could be and could be topics when meeting the ICB: How the ICB is discharging its legal duties for SEND. How the ICB’s structures for the Designated Clinical Officer (DCO) How children and young people with SEND, autism, learning disabilities and Down Syndrome are being explicitly prioritised in ICB plans. If forums need help identifying co-production opportunities with health, they can email our Strategic Health Lead [email protected] who can support forums engaging with local health systems or speak to your Contact adviser. Do you have any thoughts about this page? Visit our How to feedback page to share them. Looking for something else? You can find a full list of pages on our Parent carer forum handbook contents page. ShareCopy URLCopied!Share via EmailShare via FacebookShare via TwitterShare via WhatsAppShare via LinkedIn
Examples of parent carer forums co-producing and influencing health services Three forums in the South West England teamed up to survey parent carers to evidence to the ICB the importance of needs-led autism assessments for children after a provider narrowed children’s access to autism assessments to reduce waiting lists. The evidence was key in helping to reverse the decision. Forums in Essex collaborated with NHS services and the NHS Eastern Region to create a toolkit for health professionals to improve health contributions to Education Health and Care Plans. Read more about this here. West Sussex Parent Carer Forum co-produced this video with the NHS to share the experiences parents of autistic and learning disabled children at risk of admission to mental health hospital. Rotherham Parent Carers Forum secured monthly meetings with their local Children and Adolescent Mental Health service (CAMHS) and neurodevelopment pathway leads, to provide lived experience to shape services and practice. Co-producing ‘affirming’ diagnosis support pack for families Bedford, Bedfordshire, and Luton parent carer forums worked with local NHS trusts to create a pack to support families before and after diagnosis with conditions like autism and ADHD. The accessible pack included information on sleep, medication, sensory processing, social communication support and videos and animations. The pack used neurodiversity affirming language to describe the condition favoured by families instead of deficit language. Watch a video about their co-production journeyView the Diagnosis Support Pack
Examples of parent carer forums co-producing and influencing health services Three forums in the South West England teamed up to survey parent carers to evidence to the ICB the importance of needs-led autism assessments for children after a provider narrowed children’s access to autism assessments to reduce waiting lists. The evidence was key in helping to reverse the decision. Forums in Essex collaborated with NHS services and the NHS Eastern Region to create a toolkit for health professionals to improve health contributions to Education Health and Care Plans. Read more about this here. West Sussex Parent Carer Forum co-produced this video with the NHS to share the experiences parents of autistic and learning disabled children at risk of admission to mental health hospital. Rotherham Parent Carers Forum secured monthly meetings with their local Children and Adolescent Mental Health service (CAMHS) and neurodevelopment pathway leads, to provide lived experience to shape services and practice. Co-producing ‘affirming’ diagnosis support pack for families Bedford, Bedfordshire, and Luton parent carer forums worked with local NHS trusts to create a pack to support families before and after diagnosis with conditions like autism and ADHD. The accessible pack included information on sleep, medication, sensory processing, social communication support and videos and animations. The pack used neurodiversity affirming language to describe the condition favoured by families instead of deficit language. Watch a video about their co-production journeyView the Diagnosis Support Pack
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