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Welcome to the NNPCF and Contact Parent Carer Participation Joint Bulletin To receive copies of our joint bulletin please click onto the following link and sign up to our mailing list. To see a full list of all our newsletters please click here.

JOINT BULLETIN FRIDAY 13th OCTOBER 2017 No. 34

In this issue 1. NNPCF AGM &

Parent Participation Annual Conference

2. News from the

NNPCF Steering Group

3. Regional Visits from

the Department for Education

4. Diversity Data and

why it matters 5. SEND Survey Results 6. Health Update 7. Contact - NEW brand

launch 8. News from the

Department for Education

9. New Webinar from

the NNPCF 10. The NNPCF, PenCru

and the James Lind Alliance

Annual Conference Planning Gathers Pace

It is with great pleasure that we can now reveal further details of this year’s conference in Manchester, from the 27-28 November 2017. Entitled ‘The End of the Beginning: The road ahead of Parent Participation and the SEND Reforms’, the conference will reflect back as well as look forward, as we approach the ‘end of the beginning’ - the 3 year implementa-tion phase of the reforms. Our agenda recognises that we are at a unique crossroads and, though we have achieved a great deal, that there is a still a lot to do to create the kind of cultural change that we all want to see. In designing the agenda around what you have told us are your key objectives, we aim to:

Give Forums a high-profile national platform for their voices to be heard

Champion and role mode co-production in action Leave plenty of time for networking and learning, and Give you good value, respecting your time and money.

Our Planning Group includes Contact, the NNPCF, the Department for Education, NHS England and Seashell Trust, who are kindly sponsoring the conference again for the second time. Our hashtag for the conference is #letsparticipate so do start using it now! Booking details are now available, please check your inboxes or email us. We look forward to seeing many of you in Manchester.

"Coming together is a beginning, keeping together is progress, working together

is success." - Henry Ford

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News from the NNPCF Steering Group

NNPCF Meet the New Minister for Families and Vulnerable Children

Following the General election in June, Robert Goodwill MP was appointed

Minister for Families and Vulnerable Children.

The NNPCF have wasted no time in making contact with him and have already been able to meet with him twice. On Wednesday 19th July Mrunal Sisodia (NNPCF Co-Chair) and Amanda Batten (Chief Executive of Contact) met with him for the first time. Mrunal and Amanda discussed the work that parent carer forums do locally and nationally. He said that he was keen to meet more parent carers and families and expressed an interest in continuing to build relationships with the NNPCF, agreeing to further conversations in the coming months.

(Left to right: Amanda Batten, Robert Goodwill MP, Mrunal Sisodia)

Then on Wednesday 13th September both the NNPCF co-chairs, Maureen Morris and Mrunal Sisodia, took part in a round table meeting with him, along with a small number of stakeholders from the SEND arena. The Minister had called the meeting to gain a better understanding of the experiences and thoughts of people working across the SEND agenda.

A number of key themes were raised most notably the importance of co-production with parent-carers and children and young people, the need to continue to improve joint working between Education, Health and Care and the focus on leadership of the reforms at all levels. The Minister promised to reflect on what he heard and has agreed to continue to work with NNPCF in the future.

The National Network of Parent Carer Forums

"Our Strength is our Shared Experience."

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As we approach the end of the implementation period for the Children and Families Act, the NNPCF steering group has been reviewing its strategy for the next 2-3 years in conjunction with member parent carer forums and our major stakeholders. In a series of workshops between March and July we have looked at our vision and mission as an organisation; our objectives and our priorities; and how we manage the work that we do. It is essential that we coproduce our strategy with our membership and have sought to do this through regional meetings, a targeted survey, reviewing the aims and objectives of member forums, your feedback at conference and through SEND reform implementation surveys. Regional steering group members have been keeping you up to date on this work and been feeding back your thoughts throughout the process and on September 14th and October 18th we are holding two webinars to share our very latest thinking. These webinar will be made available on our Learning and Events page soon. It is vital that as well as participating in every stage of the development of the strategy, that our membership has the final say on it and so prior to our conference and AGM on the 27th and 28th of November we will be asking for our member forums to vote on our strategy for the next 2-3 years. Voting will take place in October and November and details of how your forum can vote will be publicised in October.

The Department for Education will be making visits to your Parent Carer Forum Regional Autumn Meetings over the coming months. It will be an opportunity for Parent Carer Forums to meet with representatives from the Department’s Regional SEND Advisor Team and/or the Department’s SEND Policy Team. We are hoping to have at least one Department for Education representative at each region, but due to simple logistics this may not always be possible. For more information about this please contact your regional steering group member.

News from the NNPCF Steering Group

Regional visits from the Department for Education

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We’d like to say a big thank you! to all forums for filling in your 2016-17 monitoring returns and for your continued involvement and commitment to making a difference to local services for disabled children and their families. Aside from giving us a financial picture of the use

of the grant, the information is also provides us with rich data about the health of forums, their relationships with local partners and their key outcomes, achievements and challenges. We use this data in our annual report, to inform the support we provide for you and to allocate our resources and priorities for webinar topics. This year we found the information from the new questions we included, relating to the overall health of forums, really helpful. From this we have established that 1/3 of forums require some form of additional support. The remaining 2/3 of forums say that they are doing ‘well’, or are doing ‘okay’ and do not require anything beyond the standard advisor support at the moment. They key areas that forums require support in are with:

Relationships – with local partners including the LA, health and local groups Support for your people – steering group; new members; skills of members;

support for parent reps Capacity and momentum - capacity, burnout and increasing membership;

maintaining momentum; pressures of dealing with the forum’s success Training – on specific topics Running the forum – mostly with standard advisor support Structure – associate support to aid the forum; governance; legal

structures; support and supervision

Parent Participation Advisors have been noting the forums that require support and will be in touch soon, to see how they can best assist you. If things change and you find that you do need some additional input, please get in touch with your Parent Participation Advisor. Remember that you can also buy in support from one of our Associates using the Department for Education grant if you have particular requirements such as facilitation, training or help with an ongoing issue that needs intensive support. Details of our Associates can be found on our website here. In addition to helping us to plan our support to you for the rest of the year, the information drawn down from the monitoring also provides a useful starting point for our negotiations and planning for a re-tender to support parent carer forums next year, and beyond. Forums have given clear indications of what they want from an organisation who are contracted to support them, and what they require in terms of development opportunities. Thank you once again!

Grant Monitoring - Thank you

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9th DfE SEND Survey Results

Need support networking and growing your Forum? Re:Group!

Are you Looking to develop your networks and relationships with other local

parent-led groups, charities or agencies on your patch? Perhaps you simply want

to recruit new members? Contact’s facilitated Re:Group session is a great place to

start! For more information please click here or to enquire about availability

please contact our Support Groups Manager Adele Meader.

Thank you to all forums who took the time to complete the May 2017 SEND Implementation Survey. The headline analysis have now been published and you can view the report on our website here. With about 7 months to go until the implementation phase of the reforms ends, there appears to be a very mixed picture of progress. From the survey results, parent carer forums may be interested to know that:

64% of forums who completed the survey are now largely or fully engaged in strategic planning with their local authority, an increase since the November 2016 survey.

44% of forums are confident that their local authority is meeting the 20-week deadline for producing at least 90% of EHC Plans.

75% (n=114) of parent carer forums responded to the survey.

79% of forums either jointly completed, or discussed their survey responses with their local authority.

57% of surveys were filled in by between 4 and upwards of 12 people.

Please refer to the report for the full findings on the national picture of SEND reforms implementation.

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Browse Aloud - New software that reads & translates websites

Southampton Parent Carer Forum recently had the exciting task of launching a new website, but along with making it interesting and easy to read, they wanted to make it accessible to all.

By using an innovative software called ‘Browse Aloud’ our website can now add speech, reading, and translation of multiple languages. This helps with participation for people with Dyslexia, Low Literacy, English as a Second Language, and those with visual impairments. Why don’t you have a go, it’s fun!

www.texthelp.com/en-gb/products/browsealoud/. Not only are we now able to confidently support people who need additional support with communication, we can use this branding on our promotional material. Since monitoring the traffic on our website data we have noticed it has had a positive impact on our hit rates which we have increased. Forum members have been impressed with our commitment to support all parents and carers. This software cost our forum £1,000 for a two year licence. However if more forums are interested it would be useful to talk to the developers of Browse Aloud as we may be able to negotiate a discount for multiple sites. So might be worth talking to your regional representative to see if anyone else wants to purchase. Please do have a look at our new website, and click on the orange headphones in the top right hand corner. We are really pleased with the results. www.sotonpcf.org.uk/

Article supplied by Southampton Parent Carer Forum

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Luton is small town with a large diverse population. At last count (2016, midterm population projections), we had 216,000 people speaking 130 different languages.

The ethnic groups based on 2011 census data were: White British (45%), South Asian (30%), African and Caribbean (10%) Eastern European (7%), dual heritage (4%), and Other (2%) [a further 2% did not say which group they belonged to]. Therefore it was very important from the outset that the Forum focused on ensuring that the views and voices collected and shared with professionals were, as far as possible, representative.

Luton is a town that attracts many first generation migrants, and local research informed us that first generation families from India, Pakistan or Bangladesh and other emerging countries were less likely to access services they needed because of the difficulties in understanding how to access the health systems.

In essences families did not understand the significance of primary care and the key role that GPs have in enabling access to further services. Instead these families were seeking support directly from the hospital and became frustrated when the hospital redirected them to primary services. By understanding the cause of such behaviour (i.e. that in many emerging counties, primary services are ad hoc, and in many rural places the hospital is the only place you will find a ‘real’ doctor), and sharing this with the hospital, who for their part needed to reduce non-urgent cases to A&E, we are co-producing a booklet which will (once complete) benefit all families.

The booklet shows parent carers of children aged 0-5yrs what to look out for and how to manage key childhood illnesses. It uses a traffic light system, beginning with self management (green), moving on to when to go to the GP (amber) and when to take your child to hospital (red). This is one example of how diversity data has helped to shape a service which will (once it is online), benefit all our families regardless of their ethnicity.

How we set about creating an ethnically reflective forum

This process started by actively reaching out to key community groups in the town and inviting people who had children with SEND to apply for positions on our steering group. This was time-consuming but worthwhile. We now have all of the key ethnic groups that are listed in our census data as members of the board.

This in turn has enabled us to reaching out further and deeper to access places of worship and other ethnically specific groups such as the Polish and Muslim groups. This has resulted in a membership closely mirroring the percentage proportions of the different ethnic groups in Luton.

Our next steps will be to reach out to other seldom heard groups that are identified (by local data) as being underrepresented in our membership. By putting the time into collecting data and then knowing how to use it effectively will further raise the profile of your forum across all key areas of Education, Health and Social Care. It did for us. - Kulvinder Bola (Chair of Luton Parent Carer Forum)

Diversity Data and why it matters: A forum perspective

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The Secretary of State for Education Justine Greening has announced plans to review school transport statutory guidance, to make sure all local authorities are providing school transport for eligible children with special educational needs.

The decision has been made as a result of findings from Contact's School Transport Inquiry. The report, published on Radio 5 Live Investigates, brings together evidence we gathered from more than 2,500 parents. We discovered: The Department for Education statement said: “In light of the findings by Contact, the department will review the statutory guidance for local authorities to ensure it is clear.” Amanda Batten, Chief Executive of Contact said “This is a huge win for all of us, and we want to say a massive thank you to everyone who submitted evidence to the inquiry. We will work with you when the statutory guidance is reviewed to make sure disabled children get the school transport they need." Contact will also be looking at the loophole for transport for 16 & 17 year olds to make sure that this is addressed too. At the same time we will use Inquiry evidence to apply pressure in devolved nations to strengthen the law. The NNPCF Steering Group said “SEN transport will be formally reviewed following an enquiry which saw contributions from parent carer forums and the NNPCF, support the initial parliamentary enquiry. We are pleased to see recognition of the challenges faced by families and will continue to champion the experience of parent carer forums in this area to raise awareness of the difficulty parent carer forums face locally in engaging with SEN transport teams as well as the individual experiences that can influence change.”

New resources We’ve produced new information for parents with disabled children about

school transport and your rights and entitlements. For local parent carer forums we have new advice on how to challenge local

school transport consultations.

Contact’s School Transport Inquiry leads to statutory review

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Current priorities in health and social care

The Kings’ Fund have recently published this handy priorities within health and social care report. It covers a number of the issues that forums may be aware of or working on with their CCG, including Sustainability and Transformation Partnerships (STPs) and the capped expenditure process. It shows the challenges that may be affecting local areas.

The Kings Fund is generally a good place if you want independent information about health and social care issues. The animations on their ‘Health and Care Explained’ page are useful for understanding some of the complexities of the health and care system and how it works together. It is worth exploring the site as it holds a wealth of information, publications, opinions and research on almost everything related to health and care. If you are interested in keeping up to date it is also worth subscribing to their email updates. Briefings - Both the introduction to the NHS & Five Year Forward View can be found here.

Want more? Buy a health Workshops for your Forum

Working Together with Health - This workshop will look at national and local health issues, help to clarify the role and contribution of forums and provide a framework for future action.

Understanding the health and social care landscape This one-day course will provide you with an introduction to the complexities of the NHS in England and will explain the role of each agency, what they do, their responsibilities and how you as a group can influence what is happening.

And finally… We are still on the lookout for examples of good partnership working with heath so if you are working well with any of your local health organisations please let Lynn know about the good work you are doing! - Lynn Hoppenbrouwers.

Health and social care updates from Contact

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You’ve probably noticed, from this newsletter if not already, that we have shortened our name and refreshed our look and feel. We’ve made these changes to help us reach more families with disabled children sooner and to highlight the wide variety of work we do.

In doing this we worked with families to develop our clearer, simpler and more accessible look, so it’s easier for those needing our help to easily understand what we offer and that we are here for them, whoever they are and whatever their child’s condition.

Amanda Batten, Chief Executive of Contact explains what prompted the refresh: “We found that our old name was confusing and acted as a barrier to some families with disabled children, stopping them from finding out more about how we can help. So, we decided to shorten our name to Contact - it’s pretty much what we do in every area of our work whether that’s putting families in contact with each other or in contact with us for vital advice, support and information.“

As the charity for families with disabled children we understand that life with a disabled child brings unique challenges and can often be overwhelming and isolating. So as well as making our website and online information more accessible, we’ve also developed new look guides and factsheets and a brand new free resource, The Helpful Guide for Families with Disabled Children a little book with everything you need to know – when you don’t know where to turn.

Amanda continues: “Our new brand aims to bring out the true essence of what lies at the heart of everything we do: families. This is an exciting time for us as a charity. Who we are hasn’t changed and the way we work hasn’t changed either – we support families, bring families together and help families take action for others. But the challenges families with disabled children face are ever more complex, and the demand for our services is rising. We are determined to reach out to more families and be ambitious about what we can achieve.”

Our email addresses and website URLs have changed, but the old ones will continue to work until such time as we have all made a full transition to Contact. Please do update your records in due course. Our new email addresses are now firstname.surname@contact.org.uk.

The majority of costs for this exercise were met by a generous supporter of Contact’s work and with pro bono support from a PR and design company, who helped Contact develop the new brand.

Contact a Family have a new brand

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Rochford Review and Primary Assessment in England

On 30 March 2017, the Department for Education launch a public consultation on the recommendations of the Rochford Review. The recommendations focused on the future of statutory assessment arrangements for pupils working below the standard of national curriculum tests at the end of key stages 1 and 2.

A parallel consultation also launched on 30 March sought views about the future of the primary assessment system in England. Details were included in a statement made to Parliament by the Secretary of State for Education, Justine Greening.

These proposals were aimed at ensuring that we establish a stable, trusted assessment system that supports all children to fulfil their potential, whatever their background. The consultation set out wide-ranging proposals for improving the primary assessment system, including consideration of the best starting point from which to measure pupil’s progress, how to ensure the assessment system is proportionate, and how to improve the statutory end of key stage teacher assessments.

The closing date for both consultations was 22 June and the Department is now considering the responses. Outcomes will be published on the consultation website. In the meantime, if you have questions please contact the assessment policy team at: PrimaryAssessment.CONSULTATION@education.gov.uk.

Ofsted and CQC Local Area Inspections

In May 2016, Ofsted and CQC began inspecting local area effectiveness in identifying, assessing and meeting the needs of children and young people with SEND. All 152 local areas will be inspected over a 5-year period from May 2016 to May 2021. These are local area inspections because they cover a range of local partners, including local authorities and clinical commissioning groups.

Inspectors report on key strengths, areas for development and, in some case, areas of significant concerns that lead to a written statement of action. One year on, 30 local area reports have been published and can be found via this link. For more information on the local area SEND inspections, please refer to the inspections handbook.

Guidance on EHC plans for 19 - 25 year olds with SEND The Department for Education has published guidance on Education, Health and Carer (EHC) plan eligibility for 19-25 year olds. It covers issues such as maintaining a plan, accessing new applicants for EHC plans and knowing when to cease a plan. It also includes information on supported internships, 16-19 study programmes, funding and higher education. For more information click here.

News from the Department for Education

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The NNPCF has been reviewing its strategy in co-production with member parent carer forums and key stakeholders. This webinar provides a summary of where were have got to and what will happen next. We looked at our vision and mission as an organisation, our objectives and priorities and how we manage the work that we do. Before starting this exercise we sought your input, via regional steering group members, feedback from the last AGM and through some surveys. We talked to stakeholders at the Department for Education, NHS England and Contact. We shared our initial draft with you and got some really great feedback. This webinar will bring you up to date with where we are and share with you the proposed strategy for the next 2-3 years. What the webinar covers:

We will define, what we mean by a vision, mission, objectives and priorities. We will explain why we need to review our strategy now as we come to the

end of the implementation phase of the Children and Families Act 2014. We will tell you the process we went through to review the strategy and

explain how it was co-produced with our membership. We will explain what we will be doing at conference to formally adopt the

new vision and mission.

Mrunal Sisodia is the NNPCF steering group member for the East of England and has been leading the review of the strategy. Lara Roberts in the NNPCF steering group member for the South East and is the NNPCF communications lead. This webinar will be made available on our Learning and Events page soon.

Contact are proud to chair the Disabled Children's Partnership (DCP), a growing coalition of more than 50 charities. Together they work closely with parent carers to campaign for improved health and social care for disabled children, young people and their families in England.

We know that 43% of the British public don't know anyone who is disabled. 97%of parents with a disabled children do not believe the public understands the challenges they face every day. #SecretLifeofUs aims to change this. Watch our film on Toby's and Millie's Secret Life. Read about the Secret Life of Rishi. The purpose of this is to open the eyes of the public to the difficulties faced by families day-to-day, removing the barriers to people being able to relate to the lives of disabled children. Through this, we can create greater understanding, affinity and empathy for affected families. Without awareness and understanding we cannot achieve real change but, with increased awareness and public support we can make a real difference. You can pledge your support for the campaign here and look for the #SecretLifeofUs hashtag on social media.

Campaigns: The DCP’s #SecretLifeofUs

New Webinar from NNPCF—Strategy Update

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Late in 2013-2014 two members of the NNPCF Steering Group, Mary Busk and Maureen Morris, were involved in a piece of work with the James Lind Alliance and PenCru’s Family Faculty around a Priority Setting Partnership for research questions. Initially a survey was co-produced with parents at PenCru’s Family Faculty and sent to parent carers and professionals. Questions were very general to elicit a wide response. Using the NNPCF’s social media outlets we were able to encourage over 700 members to respond - a record response for our partners.

Group them into commonalities was a huge task, undertaken by PenCru’s researchers. The NNPCF were then invited to sit on an advisory board made up of researchers, clinicians, young people and us as parent carers, with a professional facilitator from the James Lind Alliance (who were funding the project). The role of the advisory board was to look at each survey result to decide if it was within the scope of the work, to determine if each request was presented more than once or could be grouped into a super question.

This involved a lot of reading and a good number of questions on the part of the NNPCF. The survey results from the clinicians were obviously quite specific and technical however we were never made to feel less than full partners on the whole project and our level of expertise about why parent carers were asking for certain things opened the eyes of the clinicians and researchers. At the end of this period we had around 30 possible research areas to consider and so with the contacts that all the advisory board had we convened a workshop to discuss all the possibilities and ranked them.

The day was observed with interest by the National Institute of Health Research (NIHR) as this method of partnership working had never been used previously. The discussions were intense, at times heated but productive, and at the end of the long day we had 25 possible research projects ranked in order of importance to parents, young people with neurodisabiity and professionals.

The work was published in the British Medical Journal in 2014. Since then, this method of involving the people who will benefit most from research has become one of the pillars used by the NIHR to decide whether to fund a research question.

Recently Dr. Chris Morris the head of PenCru was the keynote speaker at the European Academy of Childhood Disability (EACD) Annual Conference in Amsterdam where he had been asked to speak about the value of this method of working and in particular of working with parent carers and young people.

Dr. Morris spoke very warmly of the vital contribution that the NNPCF had made to this work: “I like to think of them as the union of parent carers in England, because of them we were able to reach literally thousands of families that we would not have been able to without them. ” He particularly singled out the contribution of NNPCF Steering Group member Mary Busk. Mary presented the paper with Chris at the BACD conference in 2014.

Feedback: The NNPCF helps to shape research priorities

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The National Deaf Children’s Society have recently updated their factsheet: Specialist Education Support Services for Deaf Children: Advice for commissioners (England). The guide, aimed at directors of children’s services and other local decision-makers, is designed to:

· Provide information and advice on specialist education services for deaf children and their importance in helping deaf children achieve their potential.

· Remind local decision-makers of the issues and legal requirements that need to be taken into account when proposing any changes to these vital services.

· Correct some common misunderstandings about deafness.

Update Resources from the National Deaf Children’s Society

The guide might also be useful for parents who want to understand what local authorities need to do if they’re proposing to make any changes or cuts to education services for deaf children, so they can make sure the local authority is doing everything it should.

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Brighton: Wednesday 8 - Thursday 9 November 2017

The British Association for Supported Employment (BASE) holds its annual conference at the Brighton Waterfront Jurys Inn on 8-9 November 2017. BASE is a national membership charity that operates as a trade association for providers of specialist employment support. It has 170 members covering the public, commercial and voluntary sectors. Their members include national charities, local authorities, mental health NHS trusts, further education colleges and social enterprises.

The event, sponsored by Shaw Trust, will focus on ways of improving the employment rates of people who have a learning disability, autism condition or long-term mental health needs and is expected to be attended by over 200 people. The conference is aimed at:

Managers and staff working in specialist employment services

Commissioners of employment support within education, health and adult social care

Providers of supported internships and apprenticeships

Schools and colleges supporting learners with special educational needs and disabilities

Policy makers within health services, local and national government

Career advisors and Jobcentre Plus staff BASE is making free delegate places available for members of parent carer networks. There are only a handful of places left and these will be allocated on a first come first serve basis. For more information please contact Huw Davies (Chief Executive at BASE) on huw.davies@base-uk.org. The charity exists to promote supported employment as an evidence-based technique for matching the right person to the right job with the right support. Current employment rates are far too low at 5.8% for people with a learning disability. Supported employment organisations provide individually tailored support to jobseekers and employers to fully understand their needs and ambitions before carefully matching them. They provide ongoing job-coaching support to ensure successful recruitment and retention takes place. Information about the conference and booking forms are available at www.base-uk.org/conference.

BASE Annual Conference 2017

This conference is sponsored by:

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News from Dyslex.io

What is dyslex.io? A new web portal providing essential information about dyslexia and other learning differences. Developed by the British Dyslexia Association (BDA) with funding from the Department for Education, dyslex.io is for dyslexic people, their families, teachers and employers. All the information on the site comes from leading charities and other respected sources and is approved by BDA.

Why do you need it? dyslex.io was developed because we know that there is a wealth of valuable information online but it isn’t always easy to find. Designed to work in the same way as a mobile app, dyslex.io is fully accessible on all your devices. Whatever advice or information you’re looking for you’ll be able to find it quickly and easily.

So what does dyslex.io do? We want to inform and empower our users. On dyslex.io you’ll find clear information about the signs of dyslexia and other specific learning differences, as well as checklists and signposting to organisations who can provide assessments. You’ll find links to current, relevant legislation so you can learn about your legal entitlements, or your responsibilities. dyslex.io features a range of videos showing specialist teachers working with their pupils and demonstrating effective teaching methods and techniques. And, over the coming months, the library of videos will be expanding.

And we want to create a platform for sharing We want you to get involved. If you have a great idea for supporting learners or employees or a project that you want to promote, we’d love to hear from you! Our mission is to build a bank of videos and stories from the dyslexic community, for the dyslexic community. Keep an eye on our Facebook and @dyslex_io Twitter page to find out more about how you can be part of it! Find us at www.dyslex.io

To make sure that dyslex.io is a website that really works for you we have put together surveys for teachers, parents/carers and people with dyslexia who are in education. Please take the survey, or surveys, that are relevant to you and tell us what you think of dyslex.io and how we can make it even better. Teacher survey: http://bit.ly/2uylI5q Parent/carer survey: http://bit.ly/2xvg8jd Dyslexic learner survey: http://bit.ly/2wmj9C6

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Earlier this month the Voluntary Organisations Disability Group (VODG) launched a new resource to improve support to people with a learning disability or autism to participate in medication reviews.

The new resource, ‘Preparing to visit a doctor’, aims to equip social care staff to plan with an individual for a review of their psychotropic medication. It includes guidance for staff and an easy-read questionnaire to complete with the individual prior to the appointment. Decisions made at the appointment can be added to the form so that the person with a learning disability or autism has a complete record of their medication review.

Anne Webster, Clinical Lead, NHS England said: "The quality of the relationship between a support worker and a person with a learning disability or autism is critical to the doctor’s assessment and to enabling people to be involved in decisions about their own medication. This resource provides useful tips and guidance for the support worker in carrying out their role when supporting someone for a doctor's appointment along with handy templates, checklists and accessible information to use with the person being supported. Using 'Preparing to visit a doctor' will help the people you support to have healthier and longer lives. Thanks to VODG for developing this great resource. Please use it."

The resource is part of a wider campaign within the social care sector to STop Over-Medication of People with a learning disability or autism (STOMP). This encourages all learning disability and autism providers in England to sign up to the STOMP pledge for social care.

The campaign is badly needed. Public Health England estimates that every day between 30,000-35,000 people with a learning disability are taking prescribed antipsychotic or antidepressant medication, or both, without appropriate clinical justification. This means that for some people medication is being used as a means of controlling ‘problem’ behaviour, even when alternative evidence-based approaches are available. Long-term use of these medicines can lead to significant weight gain, organ failure and, in some cases, death.

The STOMP initiative is led by NHS England, and supported by the Care Quality Commission and Skills for Care and involves organisations representing social care providers, people with a learning disability or autism and their families, including: Association for Real Change BILD Care England Learning Disability England National Care Forum The Challenging Behaviour Foundation Voluntary Organisations Disability Group

New resource in the campaign to tackle over-medication

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Need Advice?

If you, or any parent carers in your forum want

individual advice or have any questions about

their service provision or support, then please tell

them to contact the Contact free helpline from

09:30 - 17:00 Monday to Friday.

Call: 0808 808 3555 Email: helpline@Contact.org.uk Website: www.contact.org.uk

Get in touch:

Contact

Strengthening Parent

Carer Participation

209-211 City Road

London EC1V 1JN

(020)7608 8700

www.contact.org.uk

Gail Walshe

Head of Parent Carer

Participation

The National Network of Parent Carer Forums (NNPCF)

c/o Contact

209-211 City Road London, EC1V 1JN (020) 7608 8708

info@nnpcf.org.uk www.nnpcf.org.uk

Sarah Gallimore

NNPCF Programme Officer

Contact: Registered Charity No. 284912. Charity registered in Scotland No. SC039169

Company limited by guarantee, registered in England and Wales No. 1633333

HM Revenue & Customs charity tax reference No. XN54769. VAT Reg. No. GB 749 3846 82

NNPCF Social Media — Twitter and Facebook

We hope that you are already linked up to our Facebook pages and Twitter. We

have been sending out daily jargon busters in relation to the reforms and

examples of the work of forums to share some of the excellent activity that is

happening all over England. If you are not already linked with us join us:

@NNPCF NNPCF