Expert Parent Programme - Getting the most from working with health professionals for your child
The Expert Parent Programme aims to help parents understand the (health) system better exploring Shared Decision Making as a process to getting the best outcomes for your children. Parents improve their skills and knowledge to navigate and manage the health system for your child including both physical and mental health wellbeing. Understand how you can be involved and support a good transition from Children's to Adults Health Services. Skills learnt are life-long and transferable!
What we do:
- The Expert Parent Programme has 3 parts: an interactive workshop, self directed on-line learning modules and many free resources. The workshop covers person-centred approaches, unique knowledge of your child, being clear on outcomes and legal rights
- Also covered is Understanding the Local Health System,Who's Who and how they help, Needs versus Rights, giving power feedback, making compliments or complaints, and building effective working partnerships with clinical and other health professionals.
- There are different workshops: a core one covering all above, for children who might need to use mental health services (CAMHS) and for children with behaviour that is challenging. There is also new workshop for children with Complex Health Needs.
- The Expert Parent Programme was co- developed by parent carers and NHS England. The national programme is hosted by Council for Disabled Children and delivered by accredited parent carers trainers. Workshops can be face to face or virtual.
- Please explore information and many useful free resources found on the webpages. https://councilfordisabledchildren.org.uk/our-work/whole-child/practice/expert-parent-programme
Age Range: 0–25
Free to use?
EXPERT PARENT PROGRAMME workshop
delivered by WSPCF on 14 Nov 2017
Feedback from professionals
Something I’ve learned today
• The perspective of parents and carers facing a daunting range of unfamiliar services.
• The fantastic information you provide to parent carers to make partnerships more effective
• The role of WSPCF – so helpful to see how this fits/your role and remit; Wiki accounts; training I can recommend to parent carers
• Loads! Have found it such an informative morning and got lots to reflect on – thank you! (and one thing I learned – about the Wiki)
• About rights
• Lots of useful info especially re where to find this
• It’s been really helpful to learn more about how the programme works to both support parents to recognise and own their expertise, and to inform parents about how to negotiate the (very complex!) NHS systems; really liked the Wikis too!
• A greater understanding of what is available (content) to parents of CYP with additional needs.
• How parent carer forum functions; what Wikis are
• That there is an Expert Parent workshop; more about the Forum; the range of tools available
• Resources that families can access to improve communication with health professionals
• Re ADHD conference and ongoing links; Wiki – amazing resource
• About what Expert Parent Programme looks like to parents
• Learned more about support available for parent carers; use of Wiki; more about Local Offer
• Good to find out about so many tools that are available to parents/carers.
What worked well for me today
• Listening to real examples of experiences; the circle with funding responsibility is useful (CCG/authority etc).
• Great mix of discussion and exercises; thinking more about the information that’s useful for parents – practical and informative
• Handouts; really knowledgeable and engaging presenters; free coffee – what a treat, thank you! and the delicious cakes, thanks to Katie; having child and adult services learning together
• Almost all of it
• It was all great and really useful.
• Interaction and sharing info
• I loved that this feels as if it’s about empowering parent carers to develop good working relationships with professionals, to get the best outcomes for their child. I also thought it was really diplomatic and constructive and considered everyone’s experiences, both personal and professional.
• The structure of the session; the level of information provided
• Experienced trainers – real life experience and examples
• The structure of the workshop; putting yourself in the shoes of a parent carer; interactive [illegible word]
• Networking/understanding how other services work; adult services; felt the course worked well and surprised that this is first time to professionals!
• Multi-disciplinary attendance; such resourceful speakers who also understood the challenges facing NHS staff
• Keeping a child in mind; very well presented – wouldn’t have known it was your first time
• Interactive exercises; facilitators’ presentation style - kept me alert and interested - and being parent carers themselves.
• Location (except for parking!); the knowledge that there is so much support out there for parents – they just need signposting.
What didn’t work so well for me
• Having specific person and family in mind
• Thinking more about links with social care as I work in an integrated team led by social care.
• Would have welcomed a bit more time for reflection/discussion on how we as professionals can imbed what we covered.
• Hard for me to keep both ways I am interested in mind, but I’m in a unique position!
• Nothing to change – was brilliant. It would be good if the sessions could be offered to more parents more regularly.
• Lots of health stuff – social care integration/functions/roles missing a bit
• More mention of interface with social care and what happens at age 18.
• Too much cake 😊
• Flashing screen!
• I work in East Sussex so frustrating that this is not available in this area for parents/carers.
Something I will do as a result of today’s session
• Be aware of the parent carer forum and the skills available to draw upon far more; review our service feedback form to ask more outcome focussed questions.
• Share with you the carers strategy I’ve written for the service to get parent carer views
• Feedback to my team about the session; look at Wiki examples and prompt families to consider this; look up the Cerebra info to share with families; contact Grainne again re the Behaviour Support Network and increase our links
• How I work with a family that ‘services’ have struggled to engage with – helping them to direct their anger in a more constructive way and see that they are part of the solution and help to convey their expertise more effectively.
• Care passport
• Share with the rest of my service, especially West Sussex
• I will let families know about the programme, Wikis and the Local Offer. Thank you. 😊
• Focus on language used.
• Feed back to team meeting about PCF and how they work
• Look at the websites and range of tools; feed back to the CLDT team meeting.
• Inform parents of the course
• Promote Local Offer and parent carer forum.
• Look at website and resources
• Become more involved in the ADHD parent support programme; learn more about Wiki and explore its implementation in our CAMHS clinic.
• Download some of the tools and documents; share (some of) what I have learned with my team.
3EPP feedback from professionals
EXPERT PARENT PROGRAMME workshops
delivered by WSPCF
on 30 June, 5 Oct, 17 Nov, 21 Nov 2017 & 19 Jan 2018
Feedback from parent carers
Something I’ve learned today
• A lot. I previously had no information at all and did not know where to start.
• About Carer Support.
• I’ve learned that I’m not alone. Resources, help and information are available.
• Organisation of NHS structure.
• Carers Support, the Local Offer and support groups.
• I learned so much – there is too much to list!
• The need to build a relationship between my son and his GP as eventually he will be discharged from paediatrician.
• So grateful for all the great information.
• The extent of Robert Hayes’ role and carers’ rights. Having been waiting since October 2016 for a Carer’s Assessment, I was right to chase it! The Local Offer; Primary/secondary/tertiary; E-learning options.
• How to get extra support
• To build a relationship with our GP; to take a sick bowl into GP surgery!
• Lots! I’ve learned so much today that it’s hard to pick one thing. Lots of reading to do later!
• Lots of different ways to get support
• More about the health service
• About accessing services, and for carers; importance of developing good relationship with GP.
• Rights and needs; I knew more than I thought I did
• Lots of ideas and services; loads of information flagged up
• That a GP is very important to my child’s future
• How to navigate the NHS; my child’s rights
• A lot of resources on rights, education and support
• Think about the ‘pink’ more than the disability
• How to distinguish the diagnosis and the likes and dislikes of the child
• How much we do as parents
• How to organise my time and resources better
• Learned lots today
• I wear a lot of hats
• Toolkit; great information
• Too much to explain on here but it’s been really valuable. Thank you.
• About Rix Wiki and WSCC funding pilot licences for it. I am eager to use.
• They can’t stop your child going on a trip, or make you go in to give medication.
• I’ve got more information on health care and how it works
• I can help my little one with further care
• Best way to communicate with professionals
• So many things! Notably, how the health system is structured.
• My family’s rights for reasonable adjustments
What worked well for me today?
• General information sharing.
• The way the workshop was run was very relaxed, friendly and informative.
• Interactive sessions.
• Great visuals and lots of info to take away.
• Excellent. Different activities, great information/speakers!
• Pointed in the right direction for further info.
• Thinking more in depth about outcomes
• Being in a supportive group; constructive participation; hearing about other peoples’ experiences; validation for the role of carer; handouts to read; expert knowledge conveyed in a relaxed way.
• Group discussions
• To view things objectively and, also, sharing information with others and hearing others’ ideas and viewpoints.
• All of it. Fantastic information and delivery of content. Nice location.
• Friendly group; trainers involved us fully
• Talking with others in a similar situation
• Friendly and informative group; great course leaders.
• Feel more confident and helped me feel better about myself
• Meeting other parents with similar challenges; lots of information and resources
• Module 3; talking with other parents; language to use
• The informal setting – open and friendly
• Meeting new people; learning about new resources
• Fantastic – thank you
• Thank you for helping me to understand more
• Discussions with other parents of disabled children
• The little Thumbs Up World brochures; hats
• I think everything was really relevant – that never happens in training!
• Figuring stuff in my head
• Rix Wiki; doctor/nurse guide really helpful
• Loved the sharing of experiences
• Brilliant workshop
• Being with the wife
• Lots of information to take away
• I am more confident now
• Morning exercise re pink and yellow post-it notes; info about NHS structure; rights and entitlements info; lunch 😊
• Vision learning; information to take home; the ladies have very clear voices
• Thank you so very much for all your good work. Thank you for all the paperwork that we could take back and refer to when needed. Thanks a lot.
• The form of the workshop, presentation and interaction
• Gathered lots of info - all presented in a very accessible way. Lovely, friendly trainers (Grainne and Rachel).
• Friendly atmosphere; pace of learning; it was all great; cake!
What didn’t work so well for me?
• A bit too much information in one sitting. Could do with two sittings.
• Speed-skimmed over some subjects that could have been delved into further.
• Not enough detail or time.
• Personally, the last part of the workshop was what I was most interested in, but felt this was a little bit rushed and perhaps less time could have been spent on the morning’s topics.
• Lots to cover – could do a follow-up session!
• It would have been interesting to find out specifics of local NHS services.
• Starting before 9:30am
• No cakes!
• I need more help on Module 3
• Separate tables
• Room layout
• Handing out papers throughout – distracting. Prefer them to be in a folder given out at start, with dividers for categories and referred to at appropriate points.
Something I will do as a result of today’s session
• Start on the EHCP.
• Explore Carer Support grant.
• Find time to review the modules online and learn more.
• Focus my communication with practitioners on outcomes for my child.
• Look into EHCPs.
• One-page profile; research Wiki; research carer?
• I have to read through the information we have been handed.
• Will write a plan of what I expect/outcomes for my son’s next appointment with paediatrician, to help guide how I want the meeting to go and to get the correct referral for him.
• Look into Wikis.
• Go on an EHCP workshop; look out for Wikis; annual health check; make the most of appointments; make the most of Carer’s Assessment; use GP more.
• Planning appointments in advance.
• Complete an All About Me sheet for my child, to send pre-appointments and clubs.
• Lots of reading; one-page profile – I will start using this very soon; appointment checklist – I will use this at my daughter’s next appointment.
• Plan medical appointments in advance.
• Have a good long chat with my family members on how to move on positively.
• I need to invest more time in building a relationship with our GP; use Local Offer and Carer’s Support; fill out an All About Me form and use it with all my son’s carers etc.
• Be more confident as a parent at school and at health appointments
• Go to my GP
• Go on the Local Offer website; do a Wiki
• Follow up on school laws; use different services etc.
• Unacceptable practices of schools – useful document to make sure my daughter is treated fairly; Wiki
• Be more mindful of my language
• More confidence with caring needs and professionals
• Look again at Local Offer; find out about Wiki; find out if extra support can be provided by GP to make our life easier
• Start a Wiki!
• Support my wife more
• Currently just post-diagnosis and waiting for next stage. Now more confident for next stage.
• Hopefully be more confident in asking for help for my children. I will definitely recommend the course to others.
• Apply for Wiki licence – set up and share with school, dom care and others like babysitters.
• Read the notes.
• I will register with Wiki; do a daily diary; help set up a care plan
• Be more confident
• Make a Wiki; apply for parent carer grant; look at the rest of the course online
• Get a Wiki; share learning on rights with other parents
4EPP feedback from parent carers
I attended the Expert Parent Programme (general) workshop at Crawley Library on 19 Jan 2018. It was really interesting and informative - and I liked the fact that we received a lot of printed info about this and related topics, including lots of helpful tips. The trainers, Rachel and Grainne, make a great double-act and are excellent at conveying the information in an interesting and accessible way. As they are parent carers themselves, they 'know their onions' and are able to teach with empathy! Thank you very much. I will definitely be following this up by doing the online modules.