Stockton Parent Carer Forum Fri, 14 Aug 2020 22:06:02 +0000 en-GB hourly 1 Stockton Parent Carer Forum 32 32 Farewell Wed, 19 Aug 2020 09:00:56 +0000 Just over three years ago I sat in a waiting area, watching on monitors a group sensory therapy session that my nephew was attending. There were other parents and carers in the little waiting area and made polite conversation as you normally would and whilst I couldn’t possibly pick out all others that attended in a crowd now but Emma Zenaj was there. Many of you will already know Emma, she has many years of experience within the SEND community. As I sat in the waiting room, Emma and I spoke and we exchanged details etc. She told me about all of these places that I should be going to, SNAPS, SPCF, and a Facebook page she was running at the time. This moment changed my life. I am not certain that there are many things that happen in life you can pinpoint to one moment, often they are a culmination of lots of different things, but this is one of them. I found Stockton Parent Carer Forum on Facebook, and there was an advert asking for people to volunteer their time. For the first time in a long time, I felt able to commit to something more than just looking after my nephew and found myself messaging the page to say that I would be interested. I didn’t at that point even know what a parent carer forum was or what they did. I went along to the first meeting that they had and I was listening to everything going on around me thinking, I don’t have a clue on what you are talking about, but I am really handy with a computer and I am happy to do any admin work that was needed. The rest, as they say, is history.

It is only now that I look back at where I was three/four years ago that I realise how alone I really was and I have the forum to thank for introducing me so many amazing people. Parents and carers who have attended coffee mornings or focus groups and feedback sessions. The professionals who I have met along the way, who haven’t always got it right, but have accepted challenge and tried to improve services with the constraints that they have. The other parent carer forums within the region that I have had the pleasure to work alongside in the last year have been their co-chair. I have had the opportunity to work with some amazing volunteers within SPCF. For however long they have stayed for, they have contributed and that has had an impact for all parents/carers in Stockton On Tees. Most of all, I have made some lifelong friends that I once wouldn’t have ever made if it were not for the day that Emma told me about the forum. It seems completely fitting that, as I leave the forum to start a new role, Emma will be taking over from me.

I cannot say that I have loved every moment of running the forum, because that would be a lie. There have been some times that have been so challenging that I wanted to walk away and I’ve cried many tears from frustration, anger and fear of decisions that people were making that I knew would impact greatly on the families in Stockton on Tees and feeling powerless to stop them. I have spent time worrying about whether the suggestions/comments and decisions that I have made on behalf of families in the local area was the right one or whether it would end up making things worse. Through all of that though, it has been one of the best experiences of my life. I have met amazing people, learnt so much and now that I move on to work in another local authority, there is so much of me that will miss the forum so very much. I’ll miss meeting with you at events and updating the Facebook page, seeing all the amazing things that you are doing for your children/young people.

I suppose, there isn’t really very much point to this blog post, except that it will be my last, and I wanted to share with you just a glimpse of how important it has been for me, personally, and I hope that you will all continue to engage with the forum. Every time you fill in a survey, respond to a question on Facebook, offer your time for a focus group or consultation or attend a coffee morning, you are making an impact on the services that you access. It may not feel like it, I know. I think it is only now in the last 10 months that I have seen real changes happening in Stockton. I know that it will go from strength to strength, but only if you continue to participate. With the deepest sincerity, I want to thank all of you for being part of the forum and as part of the forum, you have all changed my life and for that, I can never thank you enough.

Best Wishes


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The Coronavirus Bill Sun, 22 Mar 2020 23:48:07 +0000

Please take action

We hope that you and your family are keeping safe and well. We know that this is a very difficult time for all, but especially, to our children and young people with SEND. That is why we are asking you to take action. The Coronavirus Bill sets out the proposed changes and introduction of a law to allow the government to act in response to this virus. However, it potentially comes at great cost to those who rely heavily on support from social care, education and health services. Steve Broach has summarised this for The Special Needs Jungle.

The Coronavirus Bill and its implications on children and young people with SEND: Article from Special Needs Jungle

Please take the time to read through this article and find out more about the proposed bill. Contact your MP if you are concerned about this and let them know that the rights of children and young people with additional needs have to be protected. READ ARTICLE have produced a template letter that you can send to your MP, we have added the email addresses of Stockton’s MPs below.
Stockton North: Alex Cunningham –
Stockton South: Matt Vickers –


Be safe, be kind 


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February Catch Up Mon, 02 Mar 2020 18:17:23 +0000

This year, we committed to being better at communicating with you. Letting you know what is going on through various different methods rather than just social media. We have a brand new website, a termly newsletter and we are now also putting out monthly catch up e-mails. These will comprise of some statistics, demonstrating what we as a forum have done in that month. Some may find just that small capture of information not quite enough and so we will try to dive into a little more detail in the blog. Its probably easiest to split up what we have been doing into Education, Health and Care summaries.


There is work going on with NDTi to improve the local area’s EHCP’s. We were part of a multi-agency audit that looked at the quality of EHCP’S and reviews, and there were some examples that were good, and others that were not so good, some that were heartbreaking. It seemed that a lot of the time, the document was just a list of things that happened to an individual or if you were to imagine all of your own insecurities being written down on a piece of paper and presented to the world to be seen. The local area is committed to making the EHCP’s in Stockton more person-centred with quality outcomes that will focus on preparation for adulthood rather than just academic milestones. This is, of course, going to be challenging, and I don’t expect anyone to be getting it completely right all of the time. But I am hopeful that the work that has started will continue to grow and develop.

Don’t forget that the SEN & Engagement team attend the coffee mornings we have once a month for a drop-in session and there are 1-1 appointments for the 10th March available here.


I am waiting on a final statement that will be coming very soon in regards to the NeuroDevelopmental Pathway. You may be aware that a trial began last year on what is currently being called a ‘Triage’. This was a multi-agency board that assessed the referrals that were coming into CAMHS for an Autism Assessment. The panel looks at what could be provided to this child/family before putting them on a pathway or what support will the family need whilst waiting for the assessment. We will let everyone know as soon as we get the final details on this.

Stockton & Hartlepool were successful in their bid to be one of the second phases for the mental health trailblazer. This is a low-level mental health service within schools in Billingham. The feedback from parents has generally been positive, but we will continue with involvement to ensure that meeting the mental health needs of those with SEND and recognising that this may and very likely will look different to others.

Transforming Care Project work has been ongoing and continuing positively. We have between 12-15 families in both schools regularly attending and participating and we have arranged sensory training from Claire Stirland (Sensory Worx) as part of the project. The headteachers and SENCO’s have been really positive and taken on board suggestions from families and are really proactive in wanting to know how they can improve their schools to meet the needs of children with SEND.


You may be aware that the local authority ran out of money for the short breaks grant offer last year early on. We have been going back and forth with the team and are really happy to see that the funding will be in place again this year.

We will be holding an information day at Newtown Community Resource Centre, where you will be able to find out information about where you are able to spend the short breaks grant and also get help with regards to the application.

The short breaks grant applications will be returning to a two-term application process. We appreciate that for some this may cause concern, however, this is the currently the fairest way of ensuring that people are able to access the fund throughout the year. We know that this will provoke a lot of conversation positive and negative, but we would like to draw your attention to how fortunate we are in Stockton to have the offer we do. The LA are exploring lots of avenues to try and make the funding accessible for as many people as possible. 

Please note that applications will be moving to an online system. For the first six months, you will still be able to make paper applications which we will let you know as soon as they become available. However online applications will open on the 1st of April. We will be looking at how we can ensure there is support available to everyone who needs this to fill in the forms. 

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New Ventures Fri, 07 Feb 2020 14:40:46 +0000 Welcome to the brand new website for Stockton Parent Carer Forum. We have been working really hard behind the scenes to get you better informed about what we as a forum are doing for parents and carers of children and young people with SEND in Stockton on Tees.

We are excited to announce that with this website there are lots of new features. This has come from feedback from you. We know that you lead busy lives and that actually even though you would like to, you can’t always get to see us at the times we are able to be available. This has caused you to miss out on things like MAX Cards. So, we have introduced an online payment system for this. We are so happy to be able to offer this service as the Max Cards offer huge discounts across the country and this really benefits the families in our local area.

We have also been listening when you say that we don’t let you know what’s been going on enough behind the scenes. So we have introduced a newsletter. This is going to be termly to start with as there is a lot of preparation and work that goes into its production, but we think this is going to be an excellent way of getting information out to you. If you aren’t already signed up to receive information from us click here and we will add you to our mailing list.

Finally, we have added information about SEN on here, and if you think that there needs to be anything else added, then please do get in touch! We really want the forum to work for you, and that means getting your feedback. If you like what we’re doing, then please spread the word on social media as well and make sure that as many people are able to participate as possible. Keep heading back for new updates from us through this blog as we always have lots going on.

Be kind to yourself and we hope to hear or see you soon

B x

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TCP: Peer Network Sun, 01 Dec 2019 17:47:00 +0000

Once a quarter, as part of the Transforming Care Project there are children and young people peer network events where professionals from across the North East are able to come together with parents and carers and find out about the project, best practice across the region and often there are activities to try and look at how we could improve the experiences of children and young people with learning disabilities and/or autism and their families.

Our most recent event had presentations from Marie Jevon, the founder of Include ‘in’ Autism, which is a charity based in Sunderland. They provide early intervention and crisis support and workshops and other various services. She spoke about the experiences of parents and carers of children/young people with autism and how to improve that experience for them.

Becca, SPCF’s chair, also spoke about the needs led neurodevelopmental pathway that is still being developed. We’ve been approached by professionals across the area wanting to know more about the pathway and the sunflower programme especially. It has been so well received by families it is fantastic that other areas will potentially be commissioning it. As part of the North East Regional Network of Parent Carer Forums, we recognise that the services you get vary from town to town, city to city and county to county. The outcomes of children, young people and their families should not be dependent upon a postcode. So it is fantastic to hear best practice being taken on board and shared.

We will be participating in the next phase of the transforming care project which will see the schools project expanding into primary schools which we are very excited about. Early intervention is so important in the development of children and young people. We look forward to seeing what will come from this and very excited to meet the parents and carers at these schools. Working with them to develop positive relationships with professionals and become involved in the development of the schools offer to children and young people with SEND.

Short Breaks Grant Fri, 22 Nov 2019 01:43:24 +0000 In 2018 there was a consultation on the short breaks grant in Stockton. Lots of parents and carers fed back their views and the forum had lots of discussions with the service to develop this. After providing the evidence that children and young people wanted to be able to access mainstream services, and that parents and carers needed to be able to cover the additional cost of another carer to support them, there were positive changes made to the grant.

Our view, is that our short breaks grant in Stockton is a very good offer, it provides choice and offers a substantial amount in terms of funding. There have been hiccups along the way over the language used such as SEN plan. SEN plans use to refer to Statements of Educational Need, now they stand for Special Educational Needs Plan, the first is the equivalent of what is now an Education Health Care Plan. Communication is always a problem, especially when language changes, and this is a prime example. Neither party are at fault, because technically, both are correct terminology and they are both referring to a plan that is devised to outline support required to meet the needs of a child/young person with SEND. There was also the issue around 6 monthly funding allocation, the first lot of funding was equal to the second, however the first time for funding fell over the 6 weeks holiday and therefore the funding was disproportionate. This only lasted for one financial year.

Neither of them, were particularly difficult to get past, but this year, we were struck in early October by the news that the limit had been reached on the funds available for the short breaks grant. We had run out of money and therefore no further grants were to be awarded. We were asked to notify parents, which we did, and then we notified service providers (because it occurred to us that no one else was going to). Panic ensued with service providers and some had been offering services to families without confirming that they were in receipt of the short breaks grant and now a small percentage of families owe this provider a debt.

In response to this, SPCF immediately arranged to meet with the short breaks grant team to discuss what the next steps were. We had questions regarding the circumstances of the situation. There was an increase in money spent and numbers accessing. SPCF along with other organisations promoted the short breaks grant more than before, people accessed more money then they had previously (because they were able to do more with the money that they got) and in response to the ever growing waiting list for autism and access to services a slight modification in criteria meant some increase in the number of applications as well.

Outcomes from this meeting were:

There are no plans to change the amount of funding offered to families for the next financial year.

We made it clear that there needs to be a better notification in place to ensure that families are aware that the funding is limited and that they should not access services without ensuring that they have received confirmation that they have been successful in receiving the grant. This will be going on the application form not only in the guidance notes. 

There may be changes to when you can access the fund. To ensure that people are able to access this, it may be put back into two trenches. Where you will only be able to claim for 6 months and then the further 6 months. This way, money will be split into to funds and anyone that does not access it in the first tranche will have an opportunity to do so in the second.

Ultimately, we are continuing to gain views and collecting evidence of impact and if you would like to provide your views please do so by contacting us. We know that there will ultimately be people that are not going to be happy with everything, but we urge you to consider that any decisions made are to ensure that the children and young people and their families are able to access services that meet their needs, provides them with social enrichment and a break from the caring responsibilities that parent carers have. We are trying to ensure that this grant meets the needs of as many people as possible and is fair and accessible to families.

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A Journey of Co-Production Thu, 21 Nov 2019 21:59:26 +0000

If you aren’t aware, Stockton, up until very recently, had some very lengthy waiting times for an assessment of Autism by the Multi Agency Assessment Team (MAAT). At one point the numbers on the waiting list were so high that it was several years between agreement to assess and the appointments to do so. Prior to 2018, work had been carried out by agencies to try and improve the matter but none of that provided a long term solution. When the CCG were able to procure funding, a waiting list initiative was put into place and work began on a whole new pathway. A needs led pathway that would hopefully ensure that as soon as any neurodevelopmental need was identified, support was available. Whilst this work is still ongoing, and most likely always will be as the needs of the population and resources available change, we have recently been presenting the work that we have carried out in Stockton to other areas across the North East, to share best practice and learning.

It is all too often the case that we hold on to the negative experiences and memories. I should imagine that there are many reasons for this, maybes the experiences are much harder to process or the emotions that were evoked as a result are so raw that one small trigger can send you right back to where you were when it happened. There have been many times where I have looked back at a memory and been in physical pain and feel as though nothing has changed from then. I can appreciate how easy it is to remain in this state. It may be that this is how we are as a community, parents and carers who feel lost and helpless to their children, professionals who are not trained well enough, often overworked and underpaid, or in some instances, too arrogant to realise that the system that is in place isn’t working. We are equal parts of symbiotic existence, where one cannot be without the other. However, because of the negative experiences we have had, we cannot see the progress that has been made.

When I was asked to jointly present on the work that had been carried out on the neurodevelopmental pathway, I immediately went back to the very first open event I attended as a forum member. It was mid February 2018 I believe and it had been snowing previously so the roads were awful and it was cold. I sat at the back of the room, asking people to sign in. I had no idea which people were professionals and which were parent carers. By the end of the meeting I knew though. The professionals all had a look upon their face as if they knew not what to do next, and parent and carers were exhausted and emotionally drained. I thought that I remembered this more, because it had been a rather daunting and negative experience, but actually I look back and I think this is when the tide turned.

At the time there were other parent carer representatives who were far more enthusiastic about attending neurodevelopmental pathway development meetings, so as far as I was concerned, that was the first and last that I would attend. Sometimes life doesn’t go as intended and we can’t control the paths of others. For many reasons, within months of this, there were no other representatives to carry out the work, and I started to attend on behalf of the forum. The meetings were not easy and I was stupidly naive, and whilst I wouldn’t say that this was taken advantage of, it did mean that I maybes didn’t challenge enough when I should have. Over time though, as my confidence grew and my knowledge expanded, this naivety dwindled and my suggestions and ideas were head and acted upon more regularly.

When considering the ladder of co-production, we had moved from communicating to engaging. We would flag issues that were arising and rather than just taking that information and doing something with it themselves, they would consult with us about their ideas and ask for opinions after the fact. At one point we raised some issues surrounding the narrative used in letters sent out to parents and carers. I attended a meeting with a representatives from the CCG and NHS Trust Tees, Esk & Wear Valley. Together we redrafted the standardised letters. For the first time, it felt as though the forum were considered to be a partner within this process, not equal, but respected at least.

As a result of consultations carried out by the CCG, there were two priority areas of need identified. Family support and sensory integration support. When the services were commissioned there were concerns raised by the forum regarding what was being offered and how it would work. When they were commissioned we were still at a point in the journey where it felt we were asked after the decisions had been made. When I sat down to write my part of the presentation, I had thought that we were still at that point. As I looked back and considered where we were at, I thought of the most recent meeting I had attended with regards to the pathway. It was a service review. Representatives from the CCG, Stockton Borough Council, the commissioned service provider, and a new parent carer representative from the forum. We sat around and discussed what was working well, what wasn’t working, how could we improve the service or what could be added to offer more to families within Stockton. We made decisions together, collectively, and at the time it hadn’t dawned on me that, once again we had moved up a rung on the production ladder.

After the presentation, a commissioner from another local authority approached me and wanted to know if I was in paid employment. I must admit, I laughed out loud when asked. I asked why she thought that, and she said it was because throughout the presentation I referred to the work carried out as ‘we’. ‘We’ have commissioned…. ‘we’ review the service…. ‘we’ work together. I’m not going to start a discussion on the monetary value of what we do as a forum. We can safely say that none of us are here for the money, we all participate voluntarily. That however does not diminish the level of commitment and work that we put into this. I say we, because, we collectively have worked to develop a needs led pathway in Stockton. There is no longer a need for diagnosis to access lots of services (that is not to say that this myth still exists in some peoples minds).

If we look at sensory support for example. Prior to this pathway, sensory support was only available through the NHS with a diagnosis of autism. Now, there is a Sunflower Sensory Programme. This programme, provides parents and carers with knowledge and tools to meet the needs of their child with sensory processing difficulties. The child/young person is observed by a specialist and an individualised plan is developed for them. We have received only positive feedback from those who have attended the course.

The family support service, requires no diagnosis. The service covers training for parents, carers, children and young people with a neurodevelopmental disorder traits or diagnosis and their siblings. They provide 1-1 support, through meetings, telephone and email. Drop services are held in different locations across Stockton. They also provide training for front line staff including, teachers, early help, local authority staff and the health visiting service.

I know that as you are reading this, some of you may be thinking, ‘this isn’t right’ and ‘they still do this’ and a whole host of other thoughts. I know, because, I did exactly the same thing when I started thinking about it. The point here isn’t about whether there is complete satisfaction with the services that are offered as part the neurodevelopmental pathway, or if they are all running as well as they could be. If you are willing to share your experiences, we would love to hear from you and you can use our contact form to do so or send us an e-mail. This post is about the journey that we have been on.

The feedback that we get from parents and carers is what we use when we meet with service providers, commissioners and other organisations. It is your voices as parents and carers that make a difference. We, as a forum have the privilege of taking those voices and doing something positive with them. Whilst this may not meet all of the wants, hopes and desires of everyone, we work tirelessly to try and get the very best services we can for families in Stockton and we do this through co-production.

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