Improving health services
New health briefings for parent carer forums
Two new briefings for forums to outline some of the programmes and changes currently underway within the NHS. Introduction to the NHS paper provides an overview of the main organisations and jargon, with guidance on how forums can start to influence this locally. This will be useful if you find the NHS confusing and are unsure where to start.
Also available is an overview of the NHS Five Year Forward View, which is where the majority of the 'transformation' programmes stem from - the driving force behind much of the current change in the NHS. It also covers sustainability and transformation plans. If there are other areas you'd like covered in future briefings do get in touch.
Health workshop for forums ready to be delivered now!
In response to concerns raised about participation in the health system following the reforms, Contact a Family is offering this bespoke workshop led by two of our experienced consultants.
This workshop will look at national and local health issues, help to clarify the role and contribution of forums and provide a framework for future action. See the flyer for further information.
Helping forums to co-produce in health and social care
Ever since local implementation of the special educational needs and disabilities (SEND) reforms began, parent carer forums have consistently reported challenges in working with their local health partners (for example Clinical Commissioning Groups (CCGs)).
A lack of meaningful engagement with CCGs and confusion over the rights and responsibilities within the health landscape are often cited as barriers to co-production. Though in many areas relationships between forums and their local authority are developing well, local health partners are still too often seen as 'the elephant not in the room'.
For these reasons, in 2015 we received funding from the Department for Education to help boost parent carer participation in strategic health decision making.
Our Co-production in Health project aimed to:
- Develop better working relationships between parent carer forums and local health decision makers.
- Raise the understanding of local and national health decision-makers about the role of forums in delivering the SEND reforms and the principle of participation that underpins them.
Local support to forums
The project worked with nine pilot forums to receive additional support to develop their knowledge, capacity and relationships with local health decision makers.
In the North East:
- Parents in Power - Gateshead.
In Yorkshire and Humber:
- Epic Leeds.
- North East Lincolnshire Parent Participation Forum.
In the North West:
- Bolton Parent Carer Consortium.
In the West Midlands:
- Birmingham Parent Carer Forum.
In the East Midlands:
- Leicestershire Family Voice and Leicester City Parent Carer Forum.
In the South West:
- South Gloucester Parent Carer Forum.
In the South East:
- East Sussex Parent Carer Forum.
- West Sussex Parent Carer Forum.
With these forums we explored their experiences of working with local health decision makers. Together we identified:
- The need to develop a shared understanding of participation and co-production.
- The need to better understand who does what and when in local health commissioning and the duties of health partners in relation to the SEND reforms.
- The need to raise the profile of children and young people with SEND as a strategic priority.
- The need for strong leadership both locally and nationally to champion SEND and parent carer participation.
In response to these needs, our parent participation team and the pilot forums decided to develop action plans to strengthen local engagement with health decision makers, which included a clear 'offer' from forum to CCG that helped to identify local priority issues, with supporting evidence.
We have now distilled the lessons from this work into ' Engaging with Local Health Partners - a toolkit for parent carer forums'. This new resource explains health commissioning structures locally and nationally, answers the 'who does what' question and introduces some of the levers forums can access to influence local decision making.
National influence for parent voice
The project also provided the opportunity to work alongside representatives of the National Network of Parent Carer Forums (NNPCF) on the NHS England Children with Complex Needs Board, developing clear national messaging around the key role of CCGs in the SEND reforms and the need to develop strategic partnerships with forums.
This work led to a national conference in March 2016, jointly hosted by NHS England, Contact A Family and the NNPCF.
#SENDTogether was the largest gathering to date of parent carer forums and local health partners and was a key milestone in the development of local forum and CCG relationships, on which we and our partners will build in 2016 and beyond.
Presentations from #SENDTogether
- Department of Health - Parent carer participation.
- Improving the outcomes of children with SEND and disabilities.
- Implementing the SEND reforms together - NHS England's role.
- Achieving better outcomes together - NNPCF.
- Strengthening parent carer participation in health.
- PACE Setter award.
- Overcoming local challenges.
- Preparing for the SEND local area inspections.
- Designated Medical Officer role.
Further Support for Forums
Forums requiring additional support in engaging their local health partners should contact our parent participation adviser in their region.
Parent carer forums may also find the additional resources helpful:
- Healthwatch and children http://www.councilfordisabledchildren.org.uk/resources/healthwatch-children-and-young-people
- Education, Health and Care plans for health professionals http://www.councilfordisabledchildren.org.uk/resources/ehc-plans-for-health-professionals
- Independent support - health duties http://www.councilfordisabledchildren.org.uk/media/723519/isfactsheet6_healthduties.pdf
- Supporting pupils at school with medical conditions http://www.councilfordisabledchildren.org.uk/resources/supporting-pupils-at-school-with-medical-conditions
- A briefing on the Children and Families Act 2014 for health services http://www.councilfordisabledchildren.org.uk/media/531215/nhs-england-briefing-document.pdf
- Joint commissioning information pack http://www.sendpathfinder.co.uk/joint-commissioning-information-pack
- SEND local engagement resource - Together for Short lives http://www.togetherforshortlives.org.uk/assets/0000/7092/TfSL_SEND_Resource.pdf
- Children and young people's health outcomes forum report https://www.gov.uk/government/publications/improving-children-and-young-peoples-health
- NHS Mandate 2015-2016 https://www.gov.uk/government/publications/nhs-mandate-2015-to-2016
- Early intervention for young people with learning disabilities http://www.bacdis.org.uk/publications/documents/EIPBriefingPaper.pdf
- The British Academy of Childhood Disability SEND resources http://www.bacdis.org.uk/policy/SEND.htm
- Sharing good practice in health settings [PDF] - how parent carer participation has helped improve health services in different health settings.
- Parent carer forums working with commissioners - how forums have improved therapy services across Hampshire [PDF], CAMHS support in Kirklees [PDF] and palliative care in Cornwall [PDF].
- Webinar: Improving health services for disabled children - features information on health services for disabled children, health input to the special educational needs and disability (SEND) reforms and Education, Health and Care (EHC) plans. (17/09/14). See also Improving health services webinar presentation slides [PDF].
Resources supporting participation in hospital settings
- Read how parents worked with hospitals to improve the experience for disabled children in Bristol [PDF], Cambridge [PDF], Birmingham [PDF] and Manchester [PDF].
- Communication "dos and don'ts" for hospital staff [PDF].
- Autism assessment [PDF] - to identify what the child with autism might find difficult when visiting hospital.
- Computerised hospital passport - Bristol Childrens hospital.
Resources supporting work with GPs
- Make GP practices more welcoming [PDF] - practical suggestions for GP practices to make it easier for disabled children to visit their GP.
- Health services for disabled children and young people [PDF] - explains roles of different health professionals and sources of information to assist health professionals in coordinating care.
- Read how the parent carer forum in Rutland met with GP practice managers [PDF], which led to improvements for disabled children and young people visiting their GP.
- Poster - GP's role in coordinating care [PDF] - can be used to explain to CCGs why families with disabled children are falling through a gap in services.
Consultations carried out by others which you might like to adapt
- Health survey [PDF] - questionnaire used to gather the experiences of parents of disabled children accessing local health services.
- 'Speed dating' form [PDF] - useful method to help managers hear first hand from parents their experience of services.
- Listening to parents' experiences [PDF] - easy way to gather people's experiences of a service at a focus group and identify how it could be improved.
- We listened to parents experiences of the wheelchair service in South East London. Read the wheelchair service report [DOC].