coproduction and parent participation

Preparing for Adulthood – Health

Since 2021,as an ongoing project, we have been working closely with Jenny Wilkinson, Designated Clinical Offer for SEND in Bolton to better understand the barriers that parents face when their child moves out of children’s health services and into adult services.
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It had regularly come up as one of the issues that parents were telling us was an issue, and as Jenny is the Chair of a workstream about ‘Health and Preparing for Adulthood’ we thought this was an opportunity to take a good look at the issues.
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The listening groups that took place were during one of Bolton’s many covid lockdowns, therefore we moved these sessions online. 
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What was the aim of the project?

This is a long term project is to improve the experiences of children with SEND as they move into adult health services.

To start with we wanted to gain a good insight into the experiences families have faced and understand what they felt could have been better, and we also wanted to understand from those who have yet to transition what they would hope to experience.

The first element of the project is to listen to those experiences and jointly develop a set of principles that we will roll out across Bolton’s health services.

 

Planning the listening sessions.

We split parent into groups of similar experiences as we found this allows for better conversation. There were 4 groups, 2 groups were parents and carers of young people who have already transitioned out of childrens health services, and 2 groups were parents and carers of children who were approaching transition. The children and young people had varying degrees of special educational and health needs spanning from those under SEN Support at school, who may only require universal health services like the Doctor, Dentist and A&E; through to those with EHC Plans, wo have complex health needs.

We wanted to to be able to talk to the older group about what they had experienced, and what they wish had happened in hindsight. And for the younger groups we wanted to talk about what the parents were anticipating, whether any conversations had taken place and what their concerns were.

We provided everyone who joined us on Zoom with packs in the post in advance so they could have an understanding in advance of the aims of the project.

This was part of the information packs that were sent out to parents in advance of the sessions. Click on the image to read the full document.

Parent carer feedback

The following is an overview of the discussions that were held with all pf the groups, with the key messages included. 

What was discussed with parents and carers who have a young person who has already moved into adult services?

Negatives

  • There was no forward planning for transition, it felt last minute.
  • Transition sometimes only discussed at the last children’s appointment.
  • Parents unaware of no comparative adult service, and felt abandoned.
  • Parents struggled with lack of understanding from adult practitioners that the parent needed to fully participate in appointments; for instance having no way of demonstrating that they needed to be present to support the conversation, otherwise the young person wouldn’t be able to cover everything needed.
  • Some children became lost at point of transfer and needed re-referring.
  • Children’s services not always sure of what the adult service would be.
  • Schools not discussing health at EHC Annual Reviews.

Strengths

  • Some specific services seemed to be better prepared.
  • Individual practitioners highlighted as being very supportive.

What was discussed with parents and carers of younger children who are approaching transition, between ages of 13-15?

Negatives

  • Very few had had conversations as yet about transition, despite being under several services, and even when their child has an EHC Plan.
  • Parents and carers anticipating poor transition.
  • Worried about whether their child is considered to have a ‘learning disabilty’ and no one seems to be able to give a definitive answer. 
  • As a foster carer it’s even more worrying as you don’t have the same rights.

Strengths

  • Some conversations had happened about transition, particularly with community paediatrics.

Most conversation with this group was about ideas for what they would like to see, which is covered below.

What key points were taken away?

  • Information is key. The Local Offer needs to have more information about ‘What’s On’ with the information also detailing how well equipped a group is to meet the needs of children and young people with SEND.
  • Universal services/groups should be asked what is holding them back from accepting children and young people with SEND – maybe there could be training available to support them.
  • Special Schools need to take more interest in what their pupils are doing when they aren’t in school – do the parents know who their children are friendly with? Are there opportunities for parents to meet?
  • Maybe there are things out there that we just don’t know about. 
  • Could there not be a role, like a ‘transitions nurse’ to support the families that have complex health needs and use a number of health services?
  • It would be good to have a checklist that you could use to make sure you have asked the right questionns.
  • Sometimes parents don’t want to be overwhelmed too early with information for later. Is there a way to have a resource that you could dip in to when you want to?
  • Information about mental capacity and how this changes as children reach 16, and then older is hard to find and understand.

2022 – Draft Principles

All the discussion points were collated and themes considered to look at how we could develop a range of Principles for health services and practitioners to be expected to weave into their services and approach to transition. From the discussions held, 4 key themes were evident from across all groups.

These principles are to be shared initially with the original groups to ensure they feel that they encompass the discussions that were had. 

“We provide clear communication and information about the health services available young people as they move to adulthood, the information empowers young people and their families to access and engage with health services.”

“We commit to workforce training around transition, including a working knowledge of the mental capacity act and best interest decisions. We value the voice of the young person and the voice of their parent, carer or advocate.”

“We commit to offering a face to face or virtual appointment to support the handover of care from paediatric to adult services.”

“We value and understand health passports and commit to embedding these in paediatric and adult services.”

The parents and carers involved in the discussion groups were asked to score each principle on a 1-5 rating where 1 meant they felt it ‘would not help at all and 5 meant they felt ‘it would really help.’ All principles scored above 4.5 as an average.

Next Steps – 2023

August/September 2023: These principles are currently being shared with a wider audience of parent carers. If you would like to respond to a questionnaire to give your own opinion on them, please click here to open the questionnaire.

Our next steps will be to roll these principles out across services. To help the importance of these principles be better understood by health practitioners we will be sharing the principles alongside parents and carers. Of the parents that joined us on this journey, several have expressed an interest in being part of these sessions. 

We want to ensure that these principles are lived principles, and not just laminated on a wall.

The next steps of this journey, including exploring health passports will take place during 2024.

How has parent carer participation made a difference in this project?

The voice of parents and carers has been extremely powerful during this project. The experiences shared by parents who had already transitioned to adult services with their young people were particularly emotive in terms of sharing examples of being lost in the system, having poor communciation with adult services and simply losing vital services.

The desire of parents and carers to be able to empower themselves to prepare for transition has also shone through. 

Without parent and carer voices the project would have taken shape bery differently with many assumptions being made about the efficiency of transition and the availibility of information for families.

 

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