Who runs Re:Minds?

 Gill

I founded Re:Minds in 2015 as I found it hard to find local support for parents in my position, I never imagined it would evolve into what it is today.  Before this, I was a primary school teacher and a SENCo with a background in pastoral care and counselling.  I am also a member of the steering group for the Southampton Parent Carer Forum, have been a governor of a specialist school in Hampshire and am part of the PTA at my youngest’s school, as well as volunteering at a local toddler group!

I have three children, two of whom are receiving support from CAMHS.  My interests include walking my dog in the New Forest to escape the chaos of home, nature, reading and attempting to teach myself crochet and the piano!

Angi 

I joined Re:Minds on the very first session and made friends for life. I work for a local disabled children’s charity, raising funds through bid writing. I am also a founding trustee of Adhara Autism Trust and member of the steering group for the Southampton Parent Carer Forum. 

I have 3 children and the youngest is Autistic. My personal hobbies include crochet, practicing mindfulness and working on my bullet journal.

Carly

I used to help run my family business and have been part of Re:Minds since the early days. I am also a member of the Southampton Parent Carer Forum.

I have 2 teenage sons, 1 of which has autism and ADHD. I love walking the family dogs and spending time with my friends. In my spare time, I enjoy reading and seeing my friends.

How did Re:Minds start?

When my son was six years old I had to give up a career I loved in order to meet his needs.  Relentless medical and CAMHS appointments made it impossible to teach as well as be there for him.  Soon after, I had my youngest child and for a while life was an isolating bubble of chaos.  My son struggled with everything, was not coping at school and was violent at home, at one point Social Services were involved and it felt like life could not get any harder.  After a particularly awful suicidal meltdown he begged me to help him make it all stop.   Something inside me changed that day and I knew I would do whatever it took to change things for him.  Soon after we finally found medication that helped calm him and life settled (as much as it ever can). 

In early 2015 I was introduced to a woman who ran a support group in the New Forest.  Until this point I had avoided all support groups, they didn’t seem to fit my son’s complex needs and the thought of going into a room of sympathetic strangers to talk about our problems filled me with horror!  Nevertheless, I was feeling really isolated, bored having given up work and the idea of doing something which could make a difference seemed like a good idea. So I was invited along to her group with a view to setting up my own version in Southampton. 

With her help I talked to the church at the end of the road to ask if we could borrow a room from them.  I don’t attend church, but my children went to pre-school there and I was taking my youngest to their toddler group (which I now help at!).  Amazingly they agreed to help and even offered to do the refreshments…and so Re:Minds was created.  We had our first meeting in September 2015 and I was convinced it would be a failure but at least I could say that I had tried.  I advertised it by contacting the Daily Echo and local radio.  BBC Radio Solent decided to come and interview my son and I and on the morning of the first meeting they aired the interview every half hour – it was bizarre for both of us!

At 10am we had the room all set up for the first meeting and gradually other nervous people started arriving.  We took turns to talk about why we had come and slowly the nerves eased and this inexplicable feeling of mutual support and not being alone took over.  We met once a month and had occasional speakers from Autism Hampshire, Mencap, Carers and Parent Partners.  It amazed me how much we knew between us, no matter what the issue, someone in the group had been through it and could offer advice. 

In early 2017 I started a second group, I felt that whilst the speaker groups were very useful, it would be nice to have longer to talk to other families.  Again the church let us have a free room and so the pop-in meetings began.  This is still a much more relaxed group, we sit together and talk about life, cry together and laugh together.  We have random things to colour in and at times have attempted to learn to knit or crochet together – sometimes it’s good just to forget about the challenges we all face. 

By the summer of 2017 I was finding it increasingly hard to find speakers and self-fund the expenses of the group.  We had worked hard to build links with CAMHS and had been part of the team designing the new autism and ADHD pathway.  However there was a high turn-over of staff there and it was becoming a real challenge to get them to work with us.  I was on the verge of shutting down the speaker meetings and just having the pop-in one once a month.

In 2018 a new manager arrived at CAMHS and finally understood what I was trying to do.  She wanted to work with us and offered to organise speakers within her staff for whatever topic we wanted.  After years of trying to chip away at the wall surrounding CAMHS this was a huge thing for us.  We were able to work with CAMHS to help feedback the good and bad things we were hearing from our parents, we were part of interviews for new clinicians, went to staff training days and help them present workshops.  CAMHS began giving parents our leaflet when they first contacted them for a referral and so things began to grow – fast!  We also managed to get CAMHS to offer a drop-in clinic (we had been trying to get this since 2016), so every other month a CAMHS manager is there for anyone to come and seek advice from about an issue their child is facing. This finally spurred me on to think about expanding Re:Minds, having run for almost four years without any funding at all, and I began writing reports to try and get funding – I had no idea what a long, slow, complicated job that would be!

At the beginning of 2019 the CCG (Clinical Commissioning Group for Southampton) asked to meet with me to find out more about what we were doing.  Nervous, I went armed with an action plan of new things we wanted to do…if we had the money!  They agreed to fund two new groups for a year and so in the Spring of 2019 we started an evening group (we were asked to do this for years!) and one for families whose children are aged 16+.  We have realised that whilst things in children’s services are not great, adult services are even worse.  So the need to try and chip away to make a difference here began again.  At this point Angi and Carly got more formally involved (they’ve always been at every meeting, offering advice – or helping to wash up!) and we’ve become a really strong team – I don’t know what I’d do without them!  Angi’s daughter Hannah has spent months creating this website – patiently waiting for me to send her the next bit of information to add – and we are so proud of her work.  Our focus for 2020 is to get the Local Authority involved with Re:Minds, with speakers and hopefully drop-in clinics too!

We have plans to open more groups – one for families whose children have been in or recently discharged from psychiatric hospital, as our families repeatedly tell us there are problems surrounding this, and another meeting for families to bring their children with them.  We go into schools with parents to try and help advocate for them, we help with EHCPs and DLA forms, even have a selling page for things our children have finished with. Much of the work for Re:Minds goes on behind the scenes, it really has become a full-time thing!

Re:Minds has taught me that there is power in having a collective voice, together we have been able to change small things within the system. It takes time and can be frustrating, but it is making a difference. A lot has happened since I started Re:Minds in 2015. My son went from part-time mainstream school where I battled for an EHCP, to a specialist secondary school with a full time teaching assistant.  He was signed off of school by CAMHS in the autumn of 2017 with severe depression, disosciative state, psychosis and anxiety and spent six months in an adolescent psychiatric hospital.  Within six months of returning to his special school they said they could no longer meet his needs and he had to leave so he is now at home and has tutors, it’s not ideal but we are plodding on.  His little sister is now on the CAMHS waiting lists – so we are going through the process of fear and worry all over again, which some days feels impossible. 

My family has gone through things I never imagined in 2015 when Re:Minds began. The group has been the constant, the one place I can talk to other people who just get it. I have made friends I know I will have for the rest of my life there.  I cannot change the diagnosis my children have, but focusing my energy and anger into trying to make a difference to the system helps more than I ever imagined possible.