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Wiltshire Parent Carer Council

Annual Report 2020-2021

Contents

About the Wiltshire Parent Carer Council

Our Work Through the Year

Outcomes and Achievements

Challenges

Feedback

Thank you

On behalf of the Wiltshire Parent Carer Council (WPCC) Steering Group, we are delighted to present our annual report. This report aims to present and outline a snapshot of some of the hard work undertaken during 2020-2021 and some of our achievements. We are extremely grateful to our dedicated team of volunteers and staff who commit so much of themselves to do all we can to ensure that parent carers of children and young children in Wiltshire with additional needs are represented and supported.

About the Wiltshire Parent Carer Council Founded in 2008, the Wiltshire Parent Carer Council or ‘WPCC’ as we are known locally, is an independent organisation, managed and run by parent carers, for parent carers. The WPCC is proud to have established a parent carer membership of over 3,000 parent carers across Wiltshire, whose children range in age (0-25yrs) and in the type of special educational needs and/or disabilities they have. These needs include physical, sensory, learning, behaviour, mental health, communication, rare or undiagnosed conditions, complex health needs and autistic spectrum disorders (also known as ASC or AS), amongst others. The WPCC is proud that the model of participation and coproduction that we have nurtured in Wiltshire is highly regarded at a national level. Coproduction and Participation The WPCC provides a specialist consultation and participation service which enables parent carers to have a voice about services and support their children and families use. Perhaps more significantly, this service offers real opportunities to influence and shape provision across the local area, and work in partnership with the people who commission and deliver services. WPCC’s SENDIS Service Additional to our strategic coproduction and participation activity, we provide the Special Educational Needs and Disabilities Information Service (SENDIS) which offers a wealth of information as well as signposting to specialist services. The WPCC’s SENDIS Service was enhanced in 2018 when we were able to introduce our Outreach service. Providing the same service and support as our SENDIS Information Officers, our SENDIS Outreach team is able to work one to one and face to face with parent carers who would normally find it difficult to access our information, signposting and support by telephone or the internet.

Short Breaks The WPCC produces the Short Breaks Scheme leaflet which helps to promote the Wiltshire Short Breaks Scheme to parent carers and professional colleagues across the county. We support parent carers with Short Breaks enquiries and also assist many families to complete their application and monitoring forms. The Scheme was coproduced with parent carers and is reviewed each year to ensure it continues to meet the needs of children and families in Wiltshire and operates within the available budget.

To enhance available information about leisure and social opportunities for children and young people in Wiltshire, the WPCC produces its Short Breaks Bulletin 5 times a year. The Short Breaks Bulletin is packed with information about accessible clubs and activities taking place during school holidays.

Newsletters The WPCC produces and distributes a weekly Update Newsletter. This is circulated to over 3,000 parent carers a week and over 300 professional colleagues; helping to keep as many people as possible up to date with the latest information to support parent carers and raise the profile of the Local Offer.

Information To further enhance access to information, the WPCC has a comprehensive website that aims to give visitors the information they need all in one place. The WPCC website also links to Wiltshire’s Local Offer website. The WPCC invested in web technology that ‘thinks’ for itself, so whichever section of our website you are in, other pages and articles on our site related to where you are, will be automatically flagged up to you. This not only saves you time in having to search for them yourself, but it also makes sure you don’t miss out on anything important. The WPCC makes use of social media so that parent carers who prefer to access information via this platform can do so easily. The WPCC also organises and facilitates events, training, and organise consultations, workshops, focus groups and surveys to enable the parent carer voice positively influences decisions about SEND services in Wiltshire.

A Snapshot of our Work throughout the Year One of our key roles as Wiltshire’s Parent Carer Forum is to engage with our local families, so we can accurately represent them through co-production and our work in partnership with local services. We have strived to progress in keeping our community engaged and supported, despite the pressures of the Covid-19 pandemic, and have been creative in our approaches. Engaging with parent carers during the Covid-19 pandemic allowed us to identify and raise issues, such as anxieties about being able to shop and accessing the COVID vaccine. Through regular virtual coffee mornings, the forum encouraged and empowered parent carers to support each other during the pandemic. Government restrictions meant that we couldn’t organise our face-to-face engagement sessions; parent carers were also reporting that they were becoming lonely and isolated. In response to the challenges experienced by our parent carers, we turned to technology and began to facilitate regular ‘Virtual Coffee Mornings’. These were a great way of helping parent carers connect with each other and offer mutual support. As well as providing a platform to collect regular feedback about some of the issues parent carers were experiencing during lockdown, the sessions gradually evolved into information sessions as professional colleagues volunteered their support to work alongside us to provide information, tips and helpful strategies to groups of parent carers via these sessions. Attendance at these sessions grew over time and they became a place for parent carers to connect with each other and offer peer support. We enhanced this activity by launching a ‘Positive Message Board’ on the dedicated COVID section of our website. Parent carers were encouraged to support each other by sending in positive images, things to make you smile, tips and suggestions that worked for them, and messages of mutual support. To further boost morale and as a result of receiving a small financial donation, we held a weekly ‘Chocolate Raffle’ (as some parent carers suggested that chocolate was helping them get through the challenges of COVID) and we sent chocolate hampers to three winners each week who had sent in Positive Message Board contributions. It became so popular, that some parent carers sent in contributions for the Positive Message Board, but said they didn’t need chocolate and would be happy for theirs to go to other parent carers.

Our virtual coffee mornings continued to grow in popularity and we had a number of professionals also asking to attend. We tried holding them on different days and at different times before consulting with parent carers about what they wanted. Most popular was regular sessions on the same time and day, so we began to hold them once a month. In response to parent carers’ needs for support and access to early intervention, we began working with the Family and Community Learning Team (FaCL). FaCL run free online courses for adults in Wiltshire and we were able to feedback the sorts of struggles and challenges families were experiencing during lockdown as a result of not being able to attend some of the courses and support etc. that were available pre COVID. FaCL responded to this by considering virtual courses they may be able to offer additional support to parent carers. Early on in the pandemic, parent carers were identifying that they weren’t always being recognised as carers, as the focus tended to be on the paid carer workforce, rather than unpaid carers. The forum worked in partnership with a local carer organisation to highlight the issue and address some of the barriers parent carers were experiencing.

Many parent carers were also identifying that they were not being recognised as eligible for COVID vaccinations. In response to this, the forum worked in partnership with the CCG to address the issue and ensure all parent carers/unpaid carers had fair and equal access to the vaccine programme. As a result of this coproduction, the forum codesigned information for parent carers that promoted the availability of COVID vaccines to unpaid carers and agreed an inclusive approach to defining eligibility. One of the WPCC’s reps was involved in the tender and contract award of the new contract for advocacy support to support and empower parent carers, children and young people who need support to be heard.

Having recruited and trained a number of parent carer volunteers last year to deliver parenting training to parent carers, we began delivering parenting courses to parent carers online. Attendance averages at approximately 6 parent carers on a course; 53 parent carers have completed the course over the year.

The WPCC worked in partnership with architects and the LA to codesign coproduction workshops for parent carers and other stakeholders to begin developing plans for the new special school in Wiltshire. 5

The WPCC was on the interview panel for the recruitment of a Professional Lead for Integrated Therapies. A WPCC rep met with the new owners of an outdoor activity centre in Wiltshire to discuss options and opportunities for SEND inclusion.

Wiltshire Council’s website had to be moved to a new platform and without anyone realising it, this had a drastic impact on the Local Offer website. Much of the coproduction work that had been done over recent years was lost over-night and resulted in a website that parent carers and professionals did not find accessible. The LA responded positively to the WPCC’s concerns and a new Local Offer Working Group was established, enabling WPCC reps to work in partnership with LA colleagues.

We successfully recruited three new parent carer volunteers to pilot new roles as WPCC Volunteer Telephone Befrienders. Our new volunteer telephone befrienders will engage with lonely and isolated parent carers to further our reach with more of our seldom heard parent carers. Our volunteer telephone befrienders have so far completed initial training, induction, call handling training, child protection awareness training and are about to begin practise telephone sessions with WPCC reps to build confidence, before being assigned parent carers to befriend.

We presented the findings of the Autism Accelerator project to local authority colleagues and we are hoping to further this next year by recruiting more parent carer volunteers to develop and pilot basic awareness raising in schools and settings.

Outcomes, Achievements and Impact As a result of the hard work and dedication of the WPCC team, the engagement and support of our parent carer membership and the strategic work of partners across the local area, we have effected some positive change for parent carers in Wiltshire. Here are some examples of outcomes and achievements as a result of the coproduction and participation of parent carers in Wiltshire over 2020 to 2021.

Due to COVID, we have obviously not been able to host events as we have done in previous years. We have however been running a number of Virtual Coffee Mornings that have evolved over time and attracted a growing number of attendees. We tended to see different parent carers at each session depending on the theme. Our coffee mornings have helped to us to increase our membership of registered parent carers as they have attracted new parent carers who would not have been engaging with us previously. Parent carers also reported feeling less isolated during the pandemic and more supported. We have engaged with parent carers via surveys, online meetings/focus groups, webinars and telephone interviews; this is in addition to the daily information we receive and record via WPCC’s SENDIS service. We worked in partnership with the Head of Commissioning and other commissioners to review the Short Breaks Scheme for 2021/22. Despite significant financial pressures on the LA as a result of COVID and the need for savings to be realised across services, we have been successful in securing an increase to the Short Breaks budget of £40,000. This means that the impact on families due to a substantial ongoing increase in eligible numbers will be minimised. This is the third year running we have been successful in securing a budget increase for the Scheme despite significant financial challenges for the local authority, which illustrates the significant value the local authority places on the scheme, and the recognition of its positive impact on children, young people and their families. When COVID first hit early in 2020, we engaged with our parent carers to understand what the greatest and immediate challenges of the first lockdown were. Parent carers told the WPCC that they were having difficulties getting to supermarkets at times that fitted in with their caring responsibilities. We had particular feedback about not being able to use supermarket priority times for carers, the elderly and disabled people. In response to this feedback, we put information on our website and in our newsletters with details of different supermarkets’ delivery and priority arrangements. We have worked in partnership with Carer Support Wiltshire and together we wrote to local MPs. Additionally, we worked with the Community Engagement Team to raise the issue with our Wiltshire Supermarkets and the LA. As a Result, we saw some supermarkets implementing additional measures to make getting shopping easier and we had a response from Michelle Donelan MP who responded to the letter she received and said that she was happy to support the unpaid carers in Wiltshire and she wrote to the Minister of State for Care, Helen Whately MP.

If you want to know how the shoe fits, ask the person wearing it, not the person who made it or paid for it.

We ran two ‘Lockdown’ Surveys, the first was to help understand what the preparation for the return to school after the summer 2020 was like for families, and the second which closed at the end of February was designed to help us understand some of the impact of the most recent lockdown. We received 82 responses to our first survey and 481 responses to our second survey. We presented the results of both surveys to the local authority and shared them with parent carers. The results will inform future local authority planning in response to COVID.

We recently completed a series of ‘Deep Dive’ telephone interviews with parent carers to understand in detail what impact COVD has had on them and their children in terms of accessing services and support during the pandemic. We are currently attending a series of multi-agency partnership meetings with Education, Social Care and Health to share our findings. The meetings are designed to help prepare us in anticipation of any possible OfSTED/CQC local area interim visit. As a result of the Deep Dive interviews conducted by the WPCC, which typically lasted between 35 and 50 minutes each, we were able to register new parent carers and have supported others by helping them to navigate and access appropriate Local Offer information and support. Our engagement is also helping us to highlight positive examples of parent carer/young person voice in EHC Plans.

We reported working in partnership with the CCG to promote COVID vaccines for carers. As a result of our coproduction, we have codesigned information for parent carers to promote the availability of COVID vaccines to unpaid carers and agreed an inclusive approach to defining eligibility that included parent carers who may not necessarily be in receipt of Carers’ Allowance.

Last year, our membership stood at 2,772. As a result of our continued efforts to promote the forum and engage new parent carers, our membership has grown by over 300 and now stands at over 3,000 registered parent carers this year. This year we are proud to report that our membership has grown by at least 8.23% over the year. Our outreach service continues to be invaluable to our more vulnerable and seldom heard parent carers and it gives us an additional platform to understand their experiences of accessing a wide range of services. Our SENDIS service annually receives excellent reviews in our Satisfaction Survey. In 2020/21, 100% of responses rated their experience as Extremely Satisfied. We are delighted by this rating, especially as last year 90.72% of responses rated their experience as Extremely Satisfied. 8

We have managed to run our parenting courses virtually and they continue to positively influence the confidence of some parent carers. The virtual courses have enabled us to access a number of vulnerable parent carers, those who may be otherwise hard to reach as they have low confidence or processing difficulties, we have reached some dads and those who otherwise wouldn't have been able to attend due to work or caring for new babies. 53 new parent carers completed a parenting course by 31st March 2021. Many of the attendees were unaware of the WPCC when they first attended, so this activity is proving very effective in increasing our reach and membership. We are delighted to be able to report that our active volunteer numbers have now exceeded 30 people across our different areas of activity. Despite the impact of COVID, we were able to recruit, train and induct three new volunteers to lead on our new pilot initiative of volunteer telephone befrienders. Our new telephone volunteer befrienders will be matched with lonely or isolated parent carers to offer peer support and build their confidence in the hope that they will eventually feel confident enough to participate in some of our coproduction opportunities. Through regular support and supervision of our volunteer telephone befrienders. we will gather views, experience and feedback of some of these seldom heard parent carers which in turn will help to further inform some of our strategic work with partners. We have maintained regular contact with our volunteers throughout the pandemic and we are delighted that we have not lost any of our volunteers over the year. Services across Wiltshire continue to herald the WPCC as an essential service, and colleagues including those in health, celebrate the WPCC as the organisation to signpost parent carers to. Many colleagues have mentioned how much they miss WPCC events, which is testament to the important and successful role the WPCC provides in bringing the Local Offer to life and connecting providers with parent carers.

Challenges As ever, managing a busy calendar will always be a challenge, but we appreciate this is the trade -off for being embedded and at the core of the strategic process. Competing demands for WPCC engagement has increased during COVID. As many parent carers struggle to balance work, caring commitments and home education due to COVID, it can be a challenge at times for parent carers to engage in participation and coproduction activity and we have had to be realistic about our expectations. The demands of COVID restrictions have also had an impact on many of our volunteers' ability to lead on workstreams. Unsurprisingly, COVID has had a significant impact on events that we had planned for the year. We cancelled our large parent carer information events, but having invested in virtual technology, we were able to deliver much of our participation and coproduction work virtually. While this was a reasonable compromise, we recognise this presents an unfortunate barrier for some parent carers and although we tried to minimise the impact by making hard copies of surveys available and speaking to some families by telephone, this cannot compensate for face to face opportunities. COVID restrictions also limited our ability to promote the WPCC by presenting at settings etc.

As the local authority developed virtual meetings, this quickly became a new challenge for us. In the past, meetings have to some extent been dictated by room availability and the appreciation that people need travelling time to get to and from meetings etc. In the virtual world, it was recognised that travel time was not a factor and we quickly found meetings being booked back to back, and this sometimes resulted in days full of meetings with no gaps in between which can be very challenging for parent carers. The WPCC is experiencing a significant increase in demand on its services. This is due to many factors including the impact of the COVID pandemic, fewer available services, lack of Early Support, capacity across the SEND system, the popularity and effectiveness of the WPCC, complexity of cases requiring support from the WPCC, and a significant year on year increase in membership. The WPCC budget has not increased in recognition of the increase in demand and despite the WPCC’s efforts to be as creative as possible with its available resources, it is having a concerning impact on our capacity.

You Said Feedback we have received, including comments on our 2020-21 Satisfaction Survey include… I am very pleased to know about this kind of support and Didn’t realise there was support with regarding my 2 children with additional needs.

I was feeling quite nervous and apprehensive about contacting WPCC but at the 1st meeting all them feelings were put to bed and it was lovely. Really friendly, approachable, and informative ladies :-)

I emailed for advice on the covid-19 vaccine for carers. I used email as it was out of office hours and my query was non urgent. I received a reply the next morning that was helpful and supportive and signposted me to further information.

Such a helpful service the staff go above and beyond, are so respectful and knowledgeable.

The lady Sharon, has provided ultimate support one can ever hope for in a desperate situation. She has put calm and confidence in me again so I can carry on my days and my tasks as a responsible parents. Wonderful lady she really is. Thank you.

I had an amazing lady called Elaine call me today. She was very helpful and really reassuring of he steps I was making regarding my sons problems he is displaying i can not thank her enough.

so helpful, human, caring, informative, pleasant - I could go on

AWESOME!! I felt that someone finally understood what my daughter & I have been going through. The advice and support was truly touching.

Would probably get worse stress without the Wiltshire parent carer council helping me

At the end of March, a clinical lead emailed and said: "I think our relationship with Stuart and his team is one of the things that makes providing services in Wiltshire special. Over the last 5 years I have found that when parents call WPCC and are frustrated, they often tell WPCC things they don’t know how to tell us and having that link is very helpful. " 11

Thank You We would like to thank all of our supporters: our parent carer members, professional colleagues and partners, our funders and other stakeholders. Further information about what we are engaged in, updates and reports can be found on the WPCC website. We remain committed to doing all we can to help ensure the parent carer voice is at the heart of all SEND decision-making in Wiltshire, and parent carers are supported to access the information, advice and support as easily and empathetically as possible. We appreciate these are challenging times, but we remain committed to working together so that we can help each other as partners to achieve better outcomes for families, by making the best use of available resources and making informed decisions together.