What we do - Have your say! - Other local and national surveys and consultations

Twelve Month Vision for Referrals to Hospital – Opportunity to help inform the decision making of the Representative Referral Services (RRS) Steering Group

The B&NES, Swindon and Wiltshire (BSW) referral services support the referral process between a patient’s GP practice and hospital providers. If a patient has been referred routinely to be seen at a local hospital, it is likely that the referral was processed by this service.

The Clinical Commissioning Group (CCG) Governing Body has approved a programme of work in relation to referral services for the remainder of this year to March 2022. This work includes the creation of a multi directorate cross organisational steering group (BSW RSS steering group) to support the development of a future vision for the service.

BSW CCG would like to establish a patient representative sub-group to support the work and to help inform the decision making of the BSW RSS steering group.

The current plan is for the group to have three meetings between September 2021 to March 2022 (expected to be October, December and February). Each meeting will be no longer than one and a half hours and will be held virtually.

If any patients that have experience of the BSW referral service within the last 12 months are interested in joining the sub-group or would like more information then please email bswccg.engagement@nhs.net.

State of Caring Survey 2021

Last year over 6,000 of you filled in Carers UK surveys about your experiences of caring during the pandemic. Your responses have helped them campaign successfully for better guidance, testing for carers, PPE for unpaid carers, carers' “support bubbles” and exemptions to allow carers to get a break. As a result of pressure from Carers UK and many other organisations, carers were included in the priority list for the COVID-19 vaccination and Carers UK successfully campaigned for specific advice to support juggling work and care. Carers telling them what their priorities are have also helped to focus their work and help decision makers know what matters to you. They will continue to campaign for carers to get better support.

In this State of Caring Survey 2021, they want to know what life is like now, and what needs to change.

This is the most extensive survey into carers' experiences in the UK. As a result, it will take at least 30 minutes to complete.

Complete the Survey [HERE]

Please note: This survey is only for unpaid carers (or former unpaid carers) who are looking after a disabled, older or seriously ill relative or friend.

Wanted: Parent carers of bilingual pupils aged 5-12 years with dyslexia or dyslexic tendencies

Fatma Korkmaz is a PhD researcher from University of Bath. She is a former primary school teacher and has completed a master's degree in Special Educational Needs with academic research related to dyslexia provision and practice in England, at the University of Exeter.

See below for further information from Fatma on her research project:


This research investigates the support systems in place to deal with dyslexia with a particular focus on pupils from ‘’multilingual backgrounds’’. I am motivated by a lack of dyslexia research in multilingual environments, particularly against a backdrop of the growing number of pupils who speak more than one language across the world. According to the literature, needs of bilingual students who show dyslexic tendencies have been overlooked, this group of students are underrepresented Thus, it is important to champion diversity and equality in schools and classrooms practices. My study seeks to explore the factors behind this phenomenon and also explores how cultural differences and linguistically diverse environments shape children's educational experience. This knowledge would be insightful in tackling the various challenges in the education system and to explore ways to improve learning for bilingual/ multilingual pupils with dyslexia or dyslexic tendencies.

There are three parts of this study. In the last phase, I will conduct online interviews with families and the student under the supervision of parents about their experiences of dyslexia as a bilingual learner in school.

I will happily share my research results and give presentations to multilingual learners, their families and teachers or schools who work closely with them. It might help schools to proactively engage parents, particularly those who might be hard to reach or who might not understand the British Education system. Additionally, the research might help the child to value their bilingualism and to understand and navigate their dyslexia more effectively.

Ethical approval is gained from the University of Bath, Social Science Research Ethics Committee (reference: S19-065). All information gained from you and participants will be anonymised and treated as confidential and not disclosed.

Should you need any further information, please do not hesitate to contact me or my supervisor Dr Simon Hayhoe (s.j.hayhoe@bath.ac.uk).

Fatma KORKMAZ PhD
Candidate and Graduate Teaching Assistant
Department of Education University of Bath
07424 499570

Autism and Employment Survey – Chance to Win £50

Ambitious about Autism has launched a survey to gather more evidence and data about young people’s experiences of looking for work and employment in areas such as job applications, interviews and careers’ advice.

The [SURVEY] takes around 10 minutes and those who take part will be entered into a draw to win a £50 shopping voucher.

Any autistic young person aged over 16 can take part, or parents, carers, relatives or autism professionals can complete it on a young person’s behalf. The results will help Ambitious About Autism understand the needs of young people who are in or seeking employment and will inform their policy and project work going forward.

Bus Services - Take Part in a Survey to Help Shape Future Plans for Local Bus Services

Wiltshire Council is asking people to help shape the future of local bus transport, as part of an ambitious Government strategy to improve and transform services across the country.

Earlier in the year the Government published its 'Bus Back Better' vision, which underpins a national bus strategy for England that sets out ambitious reforms of how services are planned and delivered.

Around £3bn has been set aside by the Government to make improvements throughout England, and Wiltshire Council is looking at how Wiltshire and our residents can benefit from this.

In order to put together its own Bus Service Improvement Plan to share with the Government, the council is asking local people and representatives from businesses and organisations to fill out a short survey to help it establish: -

• where the current bus service offering is working
  
• where it could be better
  
• where it simply doesn't provide what is needed
  

The survey shouldn't take longer than five minutes to complete and the Council is keen to hear from non-bus users, as well as those who currently use them, as this will provide a much more wide-ranging picture of the current situation and people's circumstances.

The survey will run until 23rd August 2021. It can be found online at [Bus Service Improvement Plan survey] and hard copies will soon be available at libraries and the Council's main hubs.

More information about the Government's Bus Back Better can be found at [Government Bus Back Better webpage].

Review of Wiltshire Community Integrated Therapy Services for Children - parent carers’ survey

Background
In 2016, Wiltshire launched its community Integrated Therapies services, which is provided by Virgin Care Services. The Wiltshire Community Integrated Therapies service is made up of Physiotherapy and Occupational Therapy professionals. Children referred into the service may access support from both professions, or just one, depending on their needs.

The decision to integrate physiotherapy and occupational therapy teams was made because it was recognised that the work they do is closely related and the development of joint care plans where both professions are involved would mean that children and young people could be supported in meeting their therapy goals in a joined-up way.

Our Clinical Commissioning Group (BSW CCG) is asking parent carers whose children have accessed the Integrated Therapies service to complete a short questionnaire to let them know about your experience, to help them to understand how this new approach is working. You can access the survey [HERE].

What Next?
Following the survey, the BSW CCG, in partnership with the WPCC is planning to run two online engagement sessions in September (see dates below) to allow more detailed discussions. The sessions will be the same, just repeated on two different dates. If you would be interested in attending one of these events, please register your interest with bswccg.wiltshirechildrenservices@nhs.net.

Engagement events: -
• Friday 24th September: 11.00 to 13.00
• Tuesday 28th September: 12.30 to 14.30

The BSW CCG plans to use the feedback of parents, carers and professionals across Wiltshire to inform future developments of the service. To find out more about what the BSW CCG does, click [CCG].

Draft Guideline to Support Joined-up and Coordinated Health, Social and Education services – Have Your Say

Children and young people with severe complex needs require coordinated health, social and education services, says National Institute for Care and Excellence (NICE) in draft guideline.

NICE has opened consultation on its draft guideline on disabled children and young people up to 25 with severe complex needs. The draft guideline will support joined up and coordinated health, social and education services for these people and their families.

The draft guideline is built on the principles and requirements set out in the Special Educational Needs and Disability (SEND) Code of Practice, and will help professionals from across the health, social and education services to collaborate to deliver the best care for disabled children and young people with severe complex needs.

NICE says: “The goals, ambitions and interests of the disabled child or young person should be at the centre of planning and decision making, and their needs should be considered as a whole”.

The draft guideline recommends that the absence of a specific diagnosis should not exclude disabled children or young people with severe complex needs from receiving an education, health and care (EHC) assessment.

The consultation on the draft guideline is open until 5pm on 14th September 2021.

You can read: - • more background from NICE [HERE].
• [Draft guideline Easy Read] – this tells you about the guidance in easy read format.
• [Draft guideline] – just the recommendations.
• [Detailed documentation]

To comment on the guideline, use the comments form and email it to: CYPseverecomplexneeds@nice.org.uk

Share Your Experiences of your Child’s Learning During May 2021

University College London (UCL) would like you to take part in their study if you have a child aged between 5 and 15 years old with a neurodevelopmental condition: either a learning (intellectual) disability or an autism spectrum condition, or both. Your child may also have other conditions. They want to hear from either the child’s parent (biological, foster, adoptive, step, co-parent) or carer.

The COVID-19 pandemic brought many disruptions to children’s education. UCL are interested in understanding school attendance about a year from the start of the pandemic, and also home learning (whether that’s because of Elective Home Education or other reason).

To find out more and to take part in the survey please click [HERE]

Have Your Say on Shaping Future Support – National Consultation

On 20th July 2021, the DWP published a new Green Paper: Shaping Future Support: The Health and Disability Green Paper.

This Green Paper explores how the benefits system can better meet the needs of disabled people and those with health conditions. It was informed by extensive engagement with disabled people, people with health conditions, and their representatives, to hear about people’s experiences of DWP services and priorities for future change.

The consultation includes changes which could: -

• Enable independent living and testing the role of advocacy so people who need extra help to navigate the benefits system get the right level of support and information first time.
  
• Review how assessments are carried out including exploring the potential for longer-term use of telephone and video assessments and looking at how reassessments work including testing a new Severe Disability Group (SDG) for people with severe and life-long conditions that will not improve. This could see those who meet the criteria experiencing a more simplified application process, without the need for an assessment to receive financial support
  
• Improve support for disabled people to help them start, stay and succeed in work through the Work and Health Programme, Access to Work and on personalising employment support, recognising that one size does not fit all.
  

The consultation started by the launch of this Green Paper will last for 12 weeks. The DWP wants to hear from disabled people, people with health conditions, and their representatives about the approaches which should be considered to improve the system.

The Green Paper, along with accessible versions and a link to the consultation site, is now available on [gov.uk].

Involvement Opportunity: How Families Respond to Autistic Children’s Issues with Food

For: Parents of an autistic child who has issues with food

What: I am Linda Lee, a Research student at the School for Policy Studies, University of Bristol. I would like to invite you to take part in a one-to-one online interview, where I would ask you about your experiences of responding to your autistic child’s issues with food.

When: If you agree to take part, I will arrange a convenient time with you for an online interview in July 2021. The interview will take approximately 30 to 60 minutes.

Where: online platform (Zoom or Microsoft Teams)

Why: although no expenses will be paid, I hope that this study will improve understanding of how families with an autistic child respond to their child’s issues with food.

If you would like to find out more about the project or are interested in participating, please contact me directly through my email: qn20395@bristol.ac.uk. I will be happy to answer any questions you might have. I will also send you the participant information sheet, which has all of the important information you need to know before deciding whether you would like to participate.

If you have any comments or complaints about the study, you could contact my supervisor Dr Frederick Martineau, whose email is: frederick.martineau@lshtm.ac.uk

Draft Core Capabilities Framework for the Transition of Young People into Adult Services in England: National Consultation

Have your say on the Transition of Young People into Adult Services Core Capabilities Framework as part of the NHS Long Term Plan.

Overview

The Framework articulates the core capabilities describing the knowledge, skills and behaviours required by all healthcare staff working with young people who are transitioning to adult services. Currently there is no national framework that addresses this need.

This Framework is part of a wider programme of work and will build upon previous and current work undertaken by NHS England and Improvement (NHSE/I) and the Burdett National Transition Nursing Network. It will support this ongoing work of the need for the successful transition of young people between children’s and adult services as identified by the NHS Long Term Plan.

The current draft capabilities have been developed by a national steering group of experts as well as young people and parents.

The development of a Core Capabilities Framework will provide the health sector with a starting point to identify education and training currently available, as well as identifying any gaps. In the future this will assist the application of a consistent approach to training, for the successful transition of young people between children’s and adult services. It will be applicable to both clinical and non-clinical staff across all levels of roles in the workforce.

Whether you are a healthcare member of staff, young person, parent or carer your views are very important to the development of the Framework and thank you for taking the time to complete this survey.

The survey will be live from Monday 12th July until Sunday 22nd August 2021. Link to more information and the survey: [HERE]

Diversity of Patient and Public Group: PARTICIPATE

The University of Bath are looking for diversity in their patient and public group, [PARTICIPATE].

BSW (B&NES, Swindon and Wiltshire) research hub supports all aspects of applied health research within the University of Bath and local primary and community care. They have created a Participate Network, for members of the public with an interest in health research and a willingness to share their experiences and views. Members of the Network are involved in a number of ways, such as: -

• Being part of a research panel, which involves giving views on research ideas and plans
• Being a research partner, which involves helping researchers wit planning and designing research and disseminating results.

They support portfolio studies that are recruiting in the local area, however these are not restricted to primary care studies as they also support secondary care, mental health, social care and local authority studies.

They wish to expand their reach within the community to increase the diversity of members and encourage new people to join their PARTICIPATE network and would like to engage with local groups and interested societies within B&NES, Swindon and Wiltshire. To find our more, click [PARTICIPATE].

Ask, Listen, Act – Working Together to Inform the Provision of SEND Support for Children after the COVID-19 Pandemic

A new study, funded by the National Institute of Health Research (NIHR), has been launched to learn more about the impact of the COVID-19 pandemic and associated lockdowns on children and young people with special educational needs and disabilities (SEND).

Over the next six months, the project team will work with children and young people with SEND, their parents/carers and professionals to co-develop key priorities for the future to reduce the long-term effects of COVID-19 and lockdowns on these children.

Read more details about the study: [ASK,LISTEN,ACT STUDY]
Access the survey to share your views: [HERE]

How are Schools Coping with the Impact of COVID-19?

The SEN Policy Research Forum (SENPRF) is asking how schools are coping with the impact of COVID-19 on the teaching of pupils with SEND and is keen to hear from anyone with an interest in the teaching of children and young people with SEN and disabilities, including class teachers, senior teachers, support/advisory professionals, parents/carers, voluntary sector, staff, teacher educators and researchers.

SENPRF’s questionnaire follows up and is based on a recent policy seminar held by the SENPRF in April 2021, during which various perspectives were debated and discussed. The purpose of this questionnaire is:-

1. to find out whether you agree or disagree with these perspectives, and
2. whether you have further comments and perspectives on these matters.

The questions take about 10 minutes to complete and are organised into 3 areas:-

1. Support for school community during pandemic
2. Lessons learned for the future provision
3. Conditions required to enable these lessons to be implemented

The survey findings and conclusions will be communicated widely to inform policy discussion and debate.

To access the questionnaire please click on this [link].

Further information can be found in the attachment: Covid questionnaire invitation letter final June 2021

Do You Know a Young Person who Would Like to Have a Voice in Decisions that Affect Their Lives?

The National Children's Bureau (NCB) is recruiting Young Research Advisors (YRAs).

The group works together to help the NCB Research Team as well as other Research Centres from around the country to come up with ideas for surveys, test out interview questions, understand research findings, organise events, present at conferences and spread the word about the research findings through films and animations.

NCB regards the YRAs as their research partners. They listen and respond to their views and ideas about research topics, methods and messages but they never ask them to share personal information or experiences relating to the subjects they discuss. Above all, they get to meet loads of other children and young people and have lots of fun!

Research advisors can come from anywhere in England and don’t need to have done this sort of thing before, it’s easy to learn and everyone is welcome to take part!

NCB will cover the cost of all travel and expenses so it won’t cost a penny!

To discuss in more detail or request an application pack, please [visit the website here].

People with Autism Spectrum Conditions and their relatives and carers asked for their views on services

Healthwatch Wiltshire would like to find out what people with Autism Spectrum Conditions and their relatives and carers think about health, care and support services.

Working in partnership with [Wiltshire Service Users Network] (WSUN), which runs the National Lottery funded [Wiltshire Autism Hub], they want to learn more about the experiences of adults with autism when they attend health and care appointments, and whether they feel they are getting the support and information they need from local services.

They have launched two surveys which can be completed online, by phone, or on paper.

• [For people with an Autism Spectrum Condition]

• [For friends, relatives and carers who support someone with an Autism Spectrum Condition]

You can save and return to the online surveys at any time.

Everything you share with us will be used to tell those who run services what could be improved or developed in the future. All feedback is confidential and anonymous.

If you would like to share your views and would like support to complete the survey, or would like a paper copy to be sent to you, please contact Healthwatch Wiltshire on 01225 434218 or info@healthwatchwiltshire.co.uk or WSUN on 01380 871800 or info@wsun@btconnect.com and they will arrange this for you.

Wiltshire Centre for Independent Living - Disability Hate Crime Survey

Wiltshire Centre for Independent Living have designed a survey to raise awareness of Disability Hate Crime in Wiltshire.

They would really appreciate people’s feedback and you can take part in the survey by clicking [here]

If you have any further questions or would like support to complete the survey, please contact Wilts CIL on 0300 1233 442

Research Project – Feeding Difficulties in Children with Learning Disabilities

We have been contacted by Suzy Mejia-Buenaño a PhD Researcher who is conducting a study about parents' views of feeding difficulties and related supports in their children with learning disabilities as part of her PhD research at the Tizard Centre, University of Kent.

She is keen to meet with parents or carers who have children between the ages of 18 months-18 years with learning disabilities and feeding difficulties who would be interested in participating in a 1 - 1.5 hour online interview with her.

If you have any questions or require further information please contact Suzy on sm2197@kent.ac.uk

What is a Local Area Board?

Read more about area boards and how they are the structured, their key roles in relation to decision making and funding for local projects and how to contact your local area board members: [Area Boards]