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2020 Round up of the year for Gloucestershire Parent Carer Forum

It’s a wrap…… well nearly!

How is it December already?  Even with lockdowns the year has certainly flown by and we here at the Forum have been busy working on your behalf.  I’d like to start by thanking the Committee, some of whom have introduced themselves in previous newsletters, for all that they’ve done to make the Parent Carer Forum what it is. And also a huge thank you to our many members who share their feedback in our chats, surveys and meetings (back when we could go out the café!) and who support one another in such a friendly and welcoming way in our discussion group.

If you’re new to us you might not know everything that goes on at PCF HQ – currently a desk in my dining room – and even if you’ve been a member for a while we want to take some time to let you know what we’ve been doing over this last year.

January feels like such a long time ago!  We started the year continuing to build connections with other local organisations who work with Parent Carers.  It was good to visit Allsorts and see their fantastic play space and learn more about how they work with Parent Carers and families.  Inclusion Gloucestershire welcomed us and gave us a tour of their offices, introducing us to who they are and what they do.  Gloucestershire Carers Hub put on some Positive Behaviour Support training at the lovely Roots Café where I got to meet Parent Carers.  We also met with Gloucestershire County Council to look at Short Breaks for children and young people.

February saw a first meeting with Gloucestershire Dyslexia Association and we are really pleased to have been able to build on that connection and support a small local organisation through use of our Zoom account in more recent times. We also held a committee meeting were we drew together planning for our launch event which was booked for March.  We attended various board meetings including the SENDIASS Steering group meeting to raise the issues that we were hearing from parent carers; in the case we raised concerns around EHCPs and Annual Reviews!  I raised the issue of quality when it came to input from Advisory Teaching Service and Educational Psychology – we hear from parents on this still.  I spoke too about the need for proper Mental Health Services for children under 11 and how many Parent Carers were having to access private services for their children.   There was some discussion around Elective Home Education at this meeting and I did make the case for those Parents I’d spoken to who didn’t feel they had any choice but to remove their children from school to home educate, the Local Authority confirmed that their own information showed that parents did deregister from schools because they were dissatisfied with school and that their child’s needs were not being met there.  During Half Term I popped into The Harbour, a brilliant inclusive event hosted by Laine Lewis, a committee member, at St Andrews Church Hall.  It was a great event with a special guest appearance by The Music Man with lots of activities in the main hall and a quiet corner for those children who wanted a calm space.  There was time for chat too with other Parent Carers.  We were also pleased to have Ruth Hobbs of Somerset Parent Carer Forum join us to offer training to parent carers on how to advocate for your child in professional meetings.

March saw that training with Ruth continue in other venues across the County.  The Learning Disability Partnership Board brought about a meeting with Nick Preddy a Senior Lecturer at University of Gloucestershire and the chance to talk to final year Nursing Students about life as a Parent Carer.  Our committee meeting pulled together more planning for our Launch Event.  We also held a committee planning day looking at the vision, purpose and aims of the Forum for the coming year.  Sadly for all us Lockdown came in March and our Launch event had to be cancelled and the opportunity for so many face to face events came to a halt.  If you want to take a look at some of the organisations who were booked to join us you can find their details here on our website  Virtual SEND Information Fair – Glos Parent Carer Forum

We didn’t stop working on your behalf when lockdown came and over the course of the spring and summer we worked with Gloucestershire County Council to produce and issue 3 Parent Carer Updates which you can read here Glos Parent Carer Forum  We continued to raise concerns around the loss of respite care, challenges with access to online shopping and delivery as well as concerns for the mental health and wellbeing of Parent Carers and their children. 

In April we worked with Gloucestershire Carers Hub on a project for Carers Week and fed in to their Carer Aware scheme.  If you haven’t already signed up with the Carers Hub we really would encourage you to do that so that the County has a clearer idea of who is caring for someone and can make proper provision for Carers.  You can ask for a Carer Aware Badge which is one visible way of showing that you are caring for someone who needs your support.  Some County Council meetings moved into the virtual world so we continued to attend where we could to ensure the voice of Parent Carers was still heard. 

Moving to digital meetings brought opportunities in May to meet with other parent carer forums all over the country.  We were contacted by the County Council with news of expansion plans for Alderman Knight school that we were able to share with you.  In May we were contacted by a Parent Carer who had been told a Do Not attempt Resuscitation notice weas being put on her child’s medical file.  We worked quickly to contact the County’s Designated Medical Officer who put us and the Parent Carer in touch with other Partners in the Clinical Commissioning Group.  I am pleased to be able to say that in this case the situation was resolved quickly and that as a result further information was made available to parent carers in the update leaflet. 

Carers week began on 9th June and our social media kicked off with ‘I didn’t know I was a Carer’.  That post was seen by over a thousand people and I don’t doubt that some of those won’t have recognised themselves as Carers until they saw it.  Covid brought many into Caring who would not have been there before.  It also made things harder for many of our families.  June saw some relaxation of lockdown rules with the introduction of bubbles and we continued to share information on what that meant for Parent Carers and families.  Our very own Becky was interviewed by BBC News about what it meant to her and her family; she featured on local radio too.  Our post on June 13th about what the new bubbles meant reach nearly 7000 people!  There was chance too to join some of the virtual events offered by Gloucestershire Carers Hub.  At our committee meeting we discussed Advisory Teaching Service provision and decided to approach Gloucestershire County Council to raise concerns.   June also saw the beginning of a project on Coproduction – more on that later! 

July saw FestivAll come to Gloucestershire and here at the Parent Carer Forum we pitched in and got involved with their paper chains events in partnership with Barnwood Trust, Active Impact and Gloucestershire Deaf Association.  Lockdown had separated us from so much and so many that we were encouraged to make paper chains to symbolise the connections we had been able to make and maintain from home.  The 6th of July was the beginning of Coproduction week; a week that afforded lots of opportunity to get to grips with what coproduction is and how we might be able to begin to make it work in Gloucestershire.  We received a reply to our concerns around Advisory Teaching Services from the County Council and we will hold them to the assurance that no decision will be made without consulting with all involved…….July also saw the end of ‘education at home’ and the beginning of the Summer Holidays.  A relief to many parent carers for whom helping children learn had been a huge challenge with the loss of all their usual routines and support structures. 

August was surprisingly busy here at the Forum.  Having secured some additional funding, we were able to undertake a recruitment process and were pleased to be able to interview candidates in person, all appropriately socially distanced.  We were grateful to one of Parent Carers, Mike Lewis, for coming along to be part of the panel.  Michelle Straw accepted our offer and became our new administrator, starting in post almost immediately! We were asked by the County Council to be involved in interviewing for a new Early Help Team Manager, giving a Parent Carer perspective on candidates.  We were also asked to be involved in interviewing with Gloucestershire Carers Hub for their new Parent Carer Keyworker.  We were also able to offer training events in the evening to Parent Carers and a wellbeing evening; all of which were well received.  August also saw the first of our new member draws and a lovely cream team being delivered to a Parent Carer.

At the beginning of September we were able to meet in person for a socially distanced committee meeting!  It was fantastic to see new members join us and to be able to introduce Michelle.  As our new Administrator Michelle is your point of contact if you have any questions about how the Forum can bring issues you are facing to the attention of local services. She can also give you information about training, meet ups and our Facebook chat group. It is exciting to be able to welcome a new team member and Michelle’s skills and experience in community building are enabling her to support our voluntary Committee to use their skills to best effect.

Tuesday 8th September was the open evening in Brockworth looking at plans for the new Special School.  It was great to be able to talk to planners and Academy staff about what the school might look like and offer.  September also saw more planning for Coproduction and looking at how we might approach a programme of training.  A committed team of Parent Carers in Gloucestershire have been working on Mandatory Autism Training, a piece of work that has come out of the tragic death of Oliver McGowen; it has been interesting to work with them and with Autistic Adults on this. 

October saw us picking back up with partners at the Clinical Commissioning Group a project looking at Autism Diagnosis within the County.  We know that it is a challenge (understatement) within Gloucestershire to get access to Paediatricians, Occupational Therapy, Speech and Language Therapy, Advisory Teachers and Educational Psychologists.  What’s needed is a NICE compliant pathway that ensures children have access to services when they need them without having to wait for can be a very long time to be told that they don’t meet criteria or that they need to be seen by other specialisms first.  Here at the Forum this is something we are passionate about.  Not least because several of us have first-hand experience of living with autistic children.  October also saw the start of Coproduction Training Co-commissioned by the Forum and Gloucestershire County Council.  We offered 30 people the opportunity to come and learn together, with sessions led by the Coproduction Network of Wales.  The group was a mix of Parent Carers, Professionals from the County Council, NHS Commissioning and Young People.  Training was delivered over 10 hours, so was no small commitment from all who attended and finished just last week on November 20th.  Out of this we hope to develop a network of coproduction which can help shape the future of services in Gloucestershire.  We were also asked to speak to an Ofsted Inspector this month about how things had been for children with additional needs over lockdown and how services had performed.  This was a wide-ranging discussion and covered everything from how schools had supported children to mental health services for younger children, we were able to raise issues around transport to special schools.  I have to say I felt well and truly grilled afterwards but I hope we have done you justice.  We wait to see his report.

Here we are nearly at the end of November.  Over this year we have attended lots of meetings and raised the issues you tell us are important to you.  This was meant to be a short intro to the newsletter and feels anything but…. Well done if you’ve made it this far!  If you want to know more about what we do please ask.  We can’t always share what we know – sometimes we are asked to keep things confidential but where we can we will.  Over the year we have made it a point to really listen to what Parent Carers are telling us.  Just today I took part in a zoom session for Carers Rights Day.  I’d encourage all of our amazing Parent Carers to make sure you’ve joined the Forum and our discussion group, sign up with Gloucestershire Carers Hub and register as a Carer with your GP.  That’s a good first step to learning what your rights are as a Parent Carer and letting others know you might need some support some times. 

Christmas is hurtling towards us and Santa is coming……shhhh – you’ll see more about that on our social media over the coming weeks.  I’ll close by saying thank you for being part of the Forum and keep in touch!

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