Bekki Redshaw: Healthwatch Torbay Youth Coordinator Healthwatch Torbay

What is Healthwatch? Healthwatch Torbay is the only independent consumer watchdog for health and social care services in Torbay We support and enable all members of the public to influence local health and social care services by sharing your experiences - good or bad - with us

Our Vision Healthwatch Torbay will be the local consumer champion for health and social care services in Torbay, giving a voice to local people, community and voluntary groups to influence the way their services are planned, purchased and provided. It will be the independent local consumer champion for the public to promote better outcomes in health for all and in social care“

“Healthwatch England will act as a champion for those who sometimes struggle to be heard” “a strong voice for children and young people, as well as adults, in both health and social care” Anna Bradley, Chair of Healthwatch

include their views in communications with commissioners involve them in monitoring health and social care services at all levels DH (2012), ‘Summary Report: Issues relating to local Healthwatch regulations’

Multiple methodologies

Health Care: Clinical Commissioning Group Public Health Social Care Local authority (council) Health & Well-Being Board

National Consultation Commissioned: focus group on the Draft SEN Code of Practice series of focus groups 10 young people with a SEN Inform them of SEND changes find out their views, to ensure that disabled young people’s opinions are represented to the Government  1 hour workshop  Set questions/activities  Discussion

SEN Code Of Practice Consultation Torbay Disability Council: The Children’s Society 8 Young people Westlands School SEN Unit 9 young people

Do you know about the proposed changes for assessment & support and what they are? What information would you like to have about the new changes? What is the point? What does it do/what are the changes? How does it help me? Does it affect me? Who is involved? What does the Law do? (what are my rights?) How many people does it affect? NO

Who gives you support? Education: Health:Care: Teachers Doctors Parent Sports coaches PhysicianFoster parents TANurses God parents Pastoral leaderSports coachesCounsellor Physcio Support staff House Leader

Education: Do you feel you are in control or involved in any support you get in school Range of answers from both groups: Yes “I think we are in control of the help we get in school because we can just ask for it if we don’t want or need help we can just say we don’t need it.” “We get quite a lot of help and we have a lot of choice with it, of our own direction of it. If we have a problem with one of the TA or something, or if there’s a problem, we can tell them and it will be changed.” “In my statement review I got directly asked if I wanted a certain kind of help.” “As I got older I got asked. Like I don’t need the support anymore and it’s better it goes to someone who needs it.”

Education: Do you feel you are in control/involved in any support you get in school “It depends on how well behaved you are I guess, in a way. And how much support a different child needs to another child. So if you don’t need a lot of support then you will be in control whether you need IE or not or who you want to speak to. But then if there is another child who kicks off in class or needs a lot of help then it will be maybe it will be the teachers’ or the pscyhs decision.”

Education – are you involved? Sometimes “In certain categories of education you can say, you do get a large say as well. In other categories you can’t” “The bigger decisions get made by adults but those that affect us on a day to day we get a quite a decent amount of say” Not really Don’t know

Health Limited response Some young people said they did not have much contact with health services, but were aware of they have some rights – although not in detail “They have too. It’s illegal to say well we’re like fixing this so there.” Some young people said Drs talk to parents/carers not the Young People Although another young person said “that’s never happened to me - they always talk to me.” DC again a variety of responses with older young people saying their was a process of health practitioners involving them the older they get

Social Care – are you involved in decisions? No answers came back identifying social care professionals – focus was on parents/carers Some young people Children Looked after and mentioned having social workers but did not say they felt they were involved in decisions “I would say it depends on the parent. Some parents don’t give their children any responsibility, they just do it all for them... whereas some parents make it incredibly independent for them, they can make different decisions...”

Should have a say in the your EHC Plan/Local Offer? Yes W X 9 DC X 8 [unanimous] “it’s about us so we have to have a say” “It’s important that everyone has a say to a degree. If no one had a say then Britain wouldn’t be a Socialist society or else then it would be a dictatorship” Some young people may need support to be involved to make sure they can have their say “.. so someone should have the role to check in with you and asking other people.”

Should have a say in the your EHC Plan/Local Offer? There was some feeling that adults would not listen or act on what young people say. “The person who writes the plan will be more focussed on the adults rather than young people” A young person who has an Education, Health and Care plan will have new rights to argue against decisions they do not agree with. 9 YES otherwise it’s not fair

Who else should have a say in the EHC Plan - Parents “Parents have better ideas … Sometimes they can make good decisions but not all of the decisions they make are going to be good. That would be a bit weird if every decision they made was good especially if it was a quick decision … They can be a bit too quick to judge and they can just presume something than rather learn the full side of it. You know your actual side of it, that can affect your choice.”

3 teams working together Will there be issues with those 3 teams working together? “No, cos if they all represent vaguely the same thing, education, health and care, like, to help, then I’m sure they’ll get on fine “If 2 of them were trying to do the same thing, yeah but, but they’re all trying to do different things based on the same thing, helping somebody, in different ways. They should work together amazingly.” Do you think it’s an improvement to how it is now? “It increases simplicity. Allows everything to be done under one, whereas it was lots of different things.” ALL felt it was a good idea for Health, Education & Social Care work together

EHC Plan – Sharing information Mixed opinions that one document would be shared by many agencies “Everyone should have a copy - parent’s doctors school- All the people who should make it happen.” “… they are the people who are trying to help you and not just there in the process. As long as they are actually helping you then they should be involved.” “They should keep the information to themselves, so this is confidential this information.” “Drs who handle that kind of stuff should keep it to themselves. The same applies to the other categories.” (Health & Social Care)

EHC Plan – Sharing information Although some felt uncomfortable with sharing of information they understood it’s important as each can have impact on the others “They all need to know about your education and care to treat your health for example. It could work two ways to one. Like the two things can help you know about the one you’re doing.” “You could say you didn’t want to have some of those written down – but they are still controlling core aspects of your life. They can control how you grew up and all that. They are very important”

Sharing of Information Although it was felt that young people/parents/carers should be consulted on who else sees it “Should be our choice, if we want it to be private, because it is in the end about us” “You & your family should have the choice overall, seeing as it’s mostly focussed on you, the child then I think we should have at least some say which & where it goes.” It was important to all young people that they/their families held a copy “I think we should be able to see it what they plan to do with us. “As it’s a proper document so I think your parents should be able to keep hold of it. Keep it somewhere safe, not just thrown around your room somewhere.”

Storage Where copies of Plan were kept was an important issue “It should be kept, I’d say, somewhere secure. Somewhere you feel it will be safe. It’ll either be at your home or where you see trust (school)” they might throw it away.” For some young people there were concerns re who held it at school. “It needs to be someone who is trustworthy.” “It needs to be like someone like SEN. Somewhere in school where they look after you and your problems and stuff. Rather than some teacher - they might throw it away.”

Young People’s Involvement in their Plan What things would you like to be involved in? Who saw the Plan Involved in decisions/shaping the Plan “Certain things more involvement but not all things need our involvement” Some young people felt cynical about their active involvement “I think you can put a few words in but I don’t think you are directly in control on what’s going to happen. I am sure they’ll probably have a set plan for your future or problem you may have. They will give you a set plan for what to do to sort yourself out, to helping you get along.”.

What you want help with NOT WRITTEN IN THE PLAN Mental health support Discussing problems at home Incidents of bullying at school

Local Offer DC were only aware of services aimed at Disabled Children & Young People. 2 knew of other services as they were older and had been involved in Participation activities outside of DC Westlands were aware of formal mechanisms to access info & support SchoolSocial worker Doctor NHS Westlands were aware of services that gave advice although some they said they would not use them: “I know most of the people who go there so I feel uncomfortable going there. They go “Oh yeah, I’m going for condoms or something like that.” I’d feel really awkward.”

Involvement in Local Offer Do you think young people should be involved in how services are run in general for young people? “Yeah, cos it’s affecting them, then they should.” “I like to be consulted – then you know what’s happening, like what you want and what you don’t want.”

Involvement in Local Offer How should that happen? Different ways – to meet different needs/abilities Focus groups On-going - Disability Council One-offs - SEND Times/venue are important Surveys on-line surveys Paper surveys as well “cos not everyone has access to the internet, computers” “Surveys are like having exams” Reward

Bekki Redshaw Healthwatch Youth Coordinator Healthwatch Torbay Room 17 Paignton Library and Information Centre Great Western Road Paignton TQ4 5AG Direct Dial Mobile HWTyouth Torbay Youth Power - Healthwatch Thank you