PenCRU

Opportunity to help with research.

The team from the CELLOS Study are seeking to interview:

Children and Young People aged 8-25 years old who received elective lower limb orthopaedic surgery between the ages of 0-18 years old, or are currently listed to receive this surgery.

Parent or carer of a child who had elective lower limb orthopaedic surgery between the ages of 0-18 years old, or are currently listed for this surgery.

More information https://www.ndorms.ox.ac.uk/research/clinical-trials/the-cellos-study

If you are interested in taking part, please contact Eileen Morrow [email protected] or fill in the expression of interest form on the website.

We're holding an Online Info Event for any organisations interested in running the Healthy Parent Carer Programme. Thurs 4th July at 1:30. Tickets here https://www.eventbrite.co.uk/e/healthy-parent-carers-info-event-tickets-919503940037?aff=oddtdtcreator

We're delighted to welcome on board Helen Cochrane as an Assistant Trainer for Healthy Parent Carers. Helen will work with Bel on the new 2 day 'Top Up Training' so Assistant Facilitators can upskill to become Leads.
https://healthyparentcarers.org/welcome-helen/

We're holding an online information event for Healthy Parent Carers on 11th June. It's for groups wanting to know how to run it in their area. Please pass on to anyone who might be interested. Tickets here
https://www.eventbrite.co.uk/e/healthy-parent-carers-info-event-tickets-881351133967?aff=oddtdtcreator

Healthy Parent Carers is making a real difference to parent carers across England. Delivered in the Wirral by The Positivitree

Congratulations to Javiera who has graduated from her PhD, co-supervised by Chris Morris. She is an occupational therapist from Chile and her research was focused on how occupational therapists work with students with special educational needs or disabilities in school settings. https://www.pencru.org/news/latestnews/javieracelebrates/

Katie Atkinson has recently completed Healthy Parent Carers with the Kids charity in East Yorks. "I 100% recommend the course as a parent carer - the facilitators are kind and understanding and deliver the course in a compassionate and easy to understand way. Definitely learnt to look after myself as the glue in our family. Thank you!"

Suzanne has completed the HPC course run by LOOK.

“A fantastic course that I would recommend to any parent carer. Not only have I made some fantastic connections with other parent carers, I have learnt so much about myself and what I need going forward to be the best version of myself that I can be.

It’s easy to lose yourself as a parent/carer – now I know who I am, what I need and I have a toolbox of strategies to use everyday. When I started the course I think I was just in survival mode. Now I’m able to reflect on the pressures of every day and make sure I build time in for self care and I’m in a much better headspace.

The course is a big commitment, but you will not regret the investment in time.”

Here she is- a proud mum with her son Zac.

Just had this from Rebecca in Bournemouth who's recently completed the Healthy Parent Carers course: "It was a great course; tbh I did worry that it would be a bit preachy and pointless. But I couldn’t have been more wrong. A big thanks to you and the team for taking the time to consider parent-carers and for designing a space for us to take time to think about ourselves. I didn’t honestly think anyone outside of *what we do* even considered us for a moment. So it’s much appreciated."

Brought a tear to my eye. Thanks Rebecca for the encouragement.🥲

PenCRU team meeting today with our newest member!

The Positivitree in the Wirral have just completed their first Healthy Parent Carers programme. Charlotte, a participant says Healthy Parent Carers "Makes you think outside the box for things to help" Amanda was grateful that the programme was "helping me see me again". Lynn found the course "very calming".
Congratulations to Tam and Lyndsay for running it so successfully

Are you a parent carer of the child or young person with a physical disability e.g. cerebral palsy, spina bifida, acquired brain injury, neuromuscular conditions?
Here at PenCRU we are in need of parent carers of children with a physical disability to take part in our research study. We want to find out about what parent carers think is most important when thinking about measuring their health and wellbeing. If you want more information, please see our participant information sheet and if you want to express interest complete and submit the online Expression of Interest Form. https://healthyparentcarers.org/study/
Phill and Caomhan look forward to hearing from you 😀

Are you a parent carer of the child or young person with a physical disability?
Here at PenCRU we are in need of parent carers of children with a physical disability to take part in our research study. We want to find out about what parent carers think is most important when thinking about measuring their health and wellbeing. If you want more information, please see our participant information sheet and if you want to express interest complete and submit the online Expression of Interest Form.

Current Research – Healthy Parent Carers .

One for our followers in Devon. Closing date is tomorrow so be quick if you want to have your say!

Please take part in our parent carers SEND training survey!

We know that many parents and carers would like to learn more about how to support their child with SEND at nursery, school or college.

DiAS already runs some free information sessions but we would like to know if you want something different. What you tell us will shape the future information and training we develop and run.

We’ve made a short survey so you can share your views and ideas. There are 8 questions, most of them are multiple choice. It should take just a few minutes to complete it.

The closing date is 6th October 2023. Thank you.

http://soc.devon.cc/r8wvE

Best wishes to PenCRU researcher Caomhán on his last day in the office before he becomes a dad for the first time! We're all excited for him.

Fun times with other PenCRU Family Faculty members at Circus Starr last week in Exeter. One member emailed: "Can I say a big thank you for the circus tickets that you sent us. My son and his dad very much enjoyed the event. It was wonderful for him to be amongst so many children, all with their own special differences, disabilities and qualities and simply have fun."

PenCRU researcher Fatema is looking for participants for her research on strength training for children aged 5-14 with cerebral palsy. You can find out more here:

Cerebral Palsy: How does strength training improve brain-muscle connection? | PenCRU | University of Exeter Strength training is one of the commonly used therapies for children with CP. However, it is still not clearly understood how training affect the brain-muscle connection. Therefore, this current research aims to understand the effect of strength training on muscle size and how well the muscles work,...

📢Are you a dad or mum of a child or young person with SEND?

PenCRU researchers Phill and Caomhán need your help to explore equity and accessibility to health and wellbeing programmes for parent carers from diverse backgrounds

We'd love to hear from parent carers across four key groups:
- Dads
- Parents from diverse ethnic communities
- Parents with a sensory impairment
- Parents with a child educated outside of formal school
Please consider this exciting opportunity to help in such important research More info ➡️ https://healthyparentcarers.org/study/

Harriet Hughes, a researcher in Plymouth would like to hear from you if you have a child with cerebral palsy and could help with her research on crouch gait. Here's the website link: https://eur03.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.plymouth.ac.uk%2Fresearch%2Fraincoat-study&data=05%7C01%7CPenCRU%40exeter.ac.uk%7Cefbd64790be24f3417eb08dbb9ba5774%7C912a5d77fb984eeeaf321334d8f04a53%7C0%7C0%7C638307982299884997%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000%7C%7C%7C&sdata=6VdfP55%2BGIC6rb6z02GFlcvgzn%2BblQ02%2FEEf8Ow2B%2Fo%3D&reserved=0

Catherine has just finished the Healthy Parent Carers Programme run by Kids in the Lincolnshire and East Riding area. "It's a fantastic course for parent carers. I made some wonderful friends and made positive healthier changes." https://healthyparentcarers.org/news/

Solihull Parent Carer Voice completed their first Healthy Parent Carers Programme with 8 participants and led by Heather Delaney and Kate Goode. Read more here https://healthyparentcarers.org/news/

We've had another academic paper published about Healthy Parent Carers. Big congrats to Alice for her hard work on this.
You can read more about it here. https://healthyparentcarers.org/academic-paper-published

Fiona from Devon has recently taken part in Healthy Parent Carers. "This course has literally changed my life - my outlook, my understanding, and my response to difficult situations. Thank you so much!"
Thanks to Cara and Jenna from the Esteem Team for facilitating this- you are awesome!

I’m proud to say that Sunderland Parent Carer Forum are one of our delivery partners for Healthy Parent Carers. Well done on winning the award recognising all the hard work you have done to support Parent Carers. A special shout out to Tracey Huggins who is one of the HPC Lead Facilitators and has also won an individual award for going above and beyond in everything she does to support parent carers. You guys rock!

So true! Parent Carers often feel guilty for taking time to look after themselves. Self care isn’t being selfish it’s vital for us to be able to care for our families.

Healthy Parent Carers

Carers week 💗

The theme for Carers Week 2023 is ‘Recognising and supporting carers in the community’. It’s all about communities coming together to recognise the huge contribution unpaid carers make to society. ❤️💙💕

Parent Carers often tell us they feel under represented and feel forgotten. That’s why we’re so proud that our Healthy Parent Carers Programme is helping so many parent carers across the country delivered by our wonderful delivery partners.

Esteem Team Parent Carer Support
Sunderland Parent Carer Forum
KIDS Yorkshire
Bedford Borough Parent Carer Forum

https://healthyparentcarers.org/

We are just back from the European Academy of Childhood Disability Conference in Slovenia where Bel wowed the audience with her presentation about Healthy Parent Carers. She spoke movingly about the joys as well as the struggles of caring for a child with a disability.

We were presenting alongside the Envisage programme from Canada and the Healthy Mothers Healthy Families programme from Australia.

The CLANGERS were particularly popular, with one delegate tweeting, "The CLANGERS are such a great way to think about small things that can support wellbeing."

Jane Ring, a long-standing member of the PenCRU Family Faculty, joined us to engage with other delegates about the lived experience of parent carers.

Photo L to R: Bel, Alice, Chris and Jane.

Parent Carer Forum Devon survey for families

Parent Carer Forum Devon (PCFD) has been asked to run the baseline survey this May, and then two monitoring surveys in September and in January 2024. This will ensure that family experience is central to tracking progress and highlighting where there are problems.
PCFD have launched a short survey today with questions directly linking to the Key Performance Indicators in the SEND Improvement Plan. So what families say now, will set a baseline and help set targets for improvement.
The survey findings will be key evidence for the Department for Education when monitoring the SEND Improvement Plan. Completing this survey will help give a clear picture of what life is like for SEND families in Devon.
The survey will close on Sunday 28 May.
https://www.surveymonkey.co.uk/r/PCMayBaseline

This week is mental health awareness week. The focus is on anxiety and here are some great tips from the Mental Health Foundation shared by Jo at Affinity Hub.

Anxiety, the focus of this year’s awareness week, is very common in parent carers. In fact in my online survey of parent carer mental health on www.affinityhub anxiety, stress and worry is reported by 100% of respondents.

🌿 Tips for anxiety from the Mental Health Foundation 🌿

🌿 Focus on 4-7-8 breathing
🌿 Spend time in nature
🌿 Exercise each day, even a walk round the block can sometimes help shift difficult feelings
🌿 Challenge ruminating and ‘what if’ thoughts
🌿 Connect with trusted people and talk about how you’re feeling
🌿 Eat healthily
🌿 Only drink alcohol and caffeine in moderation

Further info here: https://www.mentalhealth.org.uk/our-work/public-engagement/mental-health-awareness-week/what-can-we-do-cope-feelings-anxiety



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